Queen Bee of 3

Did Prilosec give my daughter Asthma, bronchitis and pnuemonia?

2011-01-04T08:04:00.003-05:00

Our daughter has been on acid reflux meds since birth when she was diagnosed with GERD and pneumonia in the NICU in 2002. We had tried taking her off the meds every couple of years and her acid reflux symptoms would return. A couple years ago she developed illness induced Asthma. She would get a cold and it would immediately go to her lungs. She would end up with bronchitis or pneumonia and need a breathing treatment, course of prednisone and antibiobics. They put her on a daily steroid inhaler and an albuteral inhaler for when she got sick. Every year at her check up I would ask them if we could try to take her off the Prilosec but they told me it could make her Asthma worse if her GERD was uncontrolled.

Olivia has been off Prilosec for months after my husband took her to a gastroenterologist. Guess what happened. Her GERD symptoms are gone. She has had a couple colds and NONE HAVE RESULTED IN LUNG PROBLEMS. So we stopped having her do her daily steroid inhaler. And she has been the healthiest she has been in her whole life! I wish I could say I was surprised by all this. I had read the same information from a couple of different sources that people who were taking Prilosec for long periods of time were more likely to get pneumonia.

Article from 2004!

Article from 2009

Prilosec has also been linked to increased fractures from long term use. Article from 2010

Olivia broke her wrist when she was a toddler.

Has anyone else had a similar experience with Prilose or any other drug?

Are some kids just sickly or do they have some undignosed health issue?

2010-09-13T08:26:00.005-04:00

Olivia has already missed 2 1/2 days of school due to being sick. We are just entering the third week of school. She was out of school last Tuesday after we all spent that holiday weekend feeling yucky and tired. She came home early Firday because she went to the nurses office twice, vomited on the second trip. She was complaining of a sore throat, headache, slight temperature and with the vomiting Pat took her to the doctor for a strep test. She had strep 3 times over the summer and she knows what she feels like when she has it and she said it felt like strep this time. When she has strep she gets VERY sick VERY quickly. She once ended up with Scarlet Fever because I didn't take her to the doctor until she had a sore throat for three days. We don't mess around when she says her throat is really sore and she has a fever. Her rapid strep came back negative. She spent this weekend on a sick roller coaster ride, sick one minute then burst of energy the next. She is home again today. Of course, a cold for her could become much worse. With her illness induced Asthma we are always anticipating that she will end up with bronchitis or pneumonia and need a breathing treatment and end up on Prednisone.

Why is she always sick? Are some kids just sickly? Do you have a sickly kid?

Quick update

2010-09-04T07:41:00.006-04:00

Me and Sassy

Here is our 5 month-old kitten, Sassy. Photo above taken 6/27 and below taken 7/16. We've had her since she was 6 weeks old. My husband surprised me by bringing her home one night! He spoils me : ) She has been full of mischievous kitten energy and curiosity. She is also a little snuggle bug, she is on my stomach as I type (I'm laid out in the recliner to accommodate kitten plus laptop) She also brought fleas with her : ( We just did our 3rd round of Frontline on all the cats. I have most of her younger photos of her on my old computer which is in a box in the basement.

Stephen is doing great at his new school!! He is now in middle school with kids his own age and the classroom is QUIET. Nothing against the kids in his old class but Stephen has severe sensory issues and has had to endure their screaming and screeching for years. I think it was one of the biggest meltdown triggers for him. In some ways being exposed to such irritating audio conditions has helped desensitize him to high pitched noises. His new teacher, one to one and staff are upbeat, friendly and really care about the students. Anyone with a special needs child knows how crucial and influential the attitude and "vibes" of the people around them are to them being happy and able to make progress.

I was worried that pulling him out of summer school and him having such a long break in routine would make his transition to a new school more upsetting for him but it hasn't : ) He also hasn't shown any signs of academic regression. He is independant in the classroom and able to do what is asked of him. He will be working in the library as he did at his old school.

Olivia is enjoying her new teacher and has made one new friend. No complaints from her so far. I'm not impressed with her new teacher yet. She had no homework the first week of school.

Stephen will be having a dental exam, cleaning, work, etc. under general anesthesia for the first time in a couple weeks. This is a first for all of us and I'm really hoping he is able to get through it without feeling too scared. He has been going to our current dentist for years but has never had a thorough exam and cleaning. We have had to restrain him for fillings and crowns. We think he has just gotten to the point that it is becoming too traumatic for him to go to the dentist. He wouldn't even let the hygienist brush his teeth with a regular toothbrush the last time we took him. When his exam was done I put the feelings page up on his communication device and asked him how he was feeling. He touched the "mad" icon, touched the box at the top (will speak the icons you put in there), cleared the box and then touched "mad" again!

Olivia went to a gastroenterologist with her dad and has been taken off the Prilosec and hasn't had any episodes of GERD for a month : )

Autism Speaks is not recommended by the BBB

2010-08-25T10:02:00.001-04:00

http://www.theautismnews.com/2010/08/18/autism-speaks-not-a-charity-recommended-by-the-better-business-bureau/

Has puberty increased your child with Autism's frequency of seizures?

2010-08-24T05:41:00.003-04:00

Stephen has had a huge increase in seizures in the last 6 months. He was having one or two breakthrough seizures a year since he was diagnosed 3 years ago and he has had about 6 in the past year. He just started puberty in June. He has had 3 since June. Has anyone else had this happen with their child once they hit puberty? Is it a phase? Could it be that he needs a new medication? For now we are increasing his night time dose to 4 pills and will get his levels done in two weeks.

I need support too

2010-08-03T21:46:00.003-04:00

I am constantly reading and caring deeply about the lives of other parents who have children with special needs. I very frequently take the time to comment on others' blog posts and facebook posts to give support or advice and let them know they aren't alone. I don't get that kind of support myself and it hurts and makes me feel very isolated. It makes me not want to even bother posting anything because I don't get a lot of feedback.

"Bad" behavior, meltdowns, aggression and self-injury are a form of communication for people with Autism

2010-07-23T16:41:00.005-04:00

Yet again, summer school has brought on temper tantrums, meltdowns and biting/sib in Stephen. It hasn't been every day but it was escalating. He just started going through puberty a couple weeks ago which I am sure is contributing to his mood issues. But we go through this change in attitude, for the worse, every year when summer school is in session. We will probably never know why EXACTLY because Stephen can't tell us. That isn't entirely accurate. He IS telling us that something is wrong by his change in attitude. This has always been a reliable way for us to tell if Stephen is upset about something. He is a happy guy 99% of the time. When he becomes aggressive, has meltdowns or sib, it is for a reason. He is trying to communicate with us in the only way he knows how when something is wrong. I would rather err on the side of caution and I have pulled him out of summer school with 3 1/2 weeks to go.

It was a very difficult decision to make. I don't want to be overprotective and not let him have some new experiences or get so out of his school routine that he will be even more out of sorts when he goes back to school in the fall. But Stephen is not happy, for whatever reason, is going through puberty and his body is so out of whack from the hormones that he had 2 breakthrough seizures in a month before summer school started.

Don't use OSR #1 it could kill your children according to the FDA

2010-06-24T12:39:00.004-04:00

Click here to see the article about the FDA cracking down on the maker of the alternative Autism "treatment" OSR #1.

Celebrating Stephen's 12th birthday and the gifts of Autism

2010-06-13T13:04:00.040-04:00

We had Stephen's birthday party last week when some of my family could make a visit from Maine. My mom, stepdad, grammy and my friend Jenn and her two boys were our party guests. The party was small but everyone in attendance has been a part of his life consistantly and always loved and accepted him for who he is. Stephen could feel the genuine love coming from eveyone at his party and he had a great time.

My kids' birthdays are always a time for me to reflect. Stephen's Autism has given us many gifts over the years and as he matures they just get better and better.

1-If Stephen loves you, he really loves you and will show you. If he doesn't like you he won't show you affection and it's probably because he can sense that you don't accept him.

2-His having Autism and the challenges it brings show you who your real friends are and which family members you shouldn't even waste your time on.

3-He has helped us understand our own "quirks" and that we are who we are for whatever reason and that they make us unique and give us skills that other people don't have.

4-He loves hugs, kisses and sitting on our laps and isn't embarrassed by us showing our love for him in front of other people.

5-He doesn't reject people based on their appearance or because they aren't cool, gossip, tease or judge other people.

6-He has made us more commited to raising awarness about Autism and that ALL people with disabilities have rights and are not to be discriminated against, made fun of, abused or treated like guinea pigs.

7-He doesn't argue with me about EVERYTHING like a typical boy his age would.

8-He isn't greedy and constantly seeking out more and more things to own. He is happy with what he has.

9-He doesn't care about what is trendy or popular.

10-He would never hurt another living creature without a good reason.

11-He does things when I tell him to the FIRST time.

12-When he smiles it is genuine and never fake or used to manipulate others or mask his true feelings.

13-He doesn't show off or need to be the center of attention.

He blew out the candles for the first time this year!

14-His obsessions with books, animated movies and shows and doing searches for those things on the computer can be used as learning tools and rewards, and future job possibilities.

15-He is very tidy and loves having a place for everything and everything in its place.

16-If you want to have him do something like a chore, grooming, school work, etc. just make it part of his daily routine and he will gladly do it.

Even while opening this present he can't take his eyes off that new stack of books!

17-We get out of bed every day excited to see what new word, skill or level of understanding he will demonstrate.

He likes listening to the sound it makes when you move it.

18-He has taught us to appreciate the little things in life and that unconditional love is priceless and if you have that than you have everything.

19-His echolalia is turning into a way for him to communicate and he is blowing us away with some of the things he CHOOSES to repeat.

He kept repeating this when I was getting him ready for school last week, "I don't know if I can do it. You have to believe. You are stronger than you realize." And we have learned over the years that we are VERY strong because we have made it through every challenge that his Autism has presented us and not given up or completely fallen apart.

20-He is a great big brother and doesn't argue with, tease or beat up on his little sister.

Yes, he still loves the Toy Story movies and we are planning on taking him to his first movie theatre movie when Toy Story 3 comes out on June 18th.

My grammy and my mom. My mom has always been there for me and always supported my son and my family. She has taught me the meaning of unconditional love and I have been able to give to my children. My son is such a lucky young man to have people that love, support and accept him. Without those priceless things he wouldn't be who he is today.

I am so proud of Stephen and the wonderful young man he is turning out to be and all the ways that his Autism has made us better people and parents.

How has Autism touched your life in a positive way?

Autism and taking pills

2010-05-20T10:50:00.004-04:00

For months before Stephen's most recent Neurology appointment he was taking longer and longer to take his seizure meds.

He has never taken pills, ever. When he was really little and still liked juice boxes, I would pop up the flap on side without the straw and cut a little bit of the tip off and either put in crushed pills or pour in liquid medicine. Luckily, for him and us, he has only had to take antibiotics a couple times in his life. He has had to suffer through a few very high fevers, the last one we resorted to suppository acetaminophen, and the body aches, headaches, etc. that go along with flus because he wouldn't even eat chewable medicine : ( When he was diagnosed with Epilepsy about 3 years ago we were lucky that he liked to eat bread with jelly on it. He doesn't drink anything but water. He does not eat yogurt, apple sauce, pudding, jello or any of the usual things you can hide meds in.

So for 3 years, twice a day, every day, he has eaten a piece of bread with his liquid seizure meds on it and covered with grape jam. He would watch a movie in the morning while he ate it. At night he would watch a movie on his computer, once he got a new one, while he ate. The average time it would take him to eat it would be about a half an hour max. Until about 6 months ago. He took longer and longer over the months. The last month he was on the liquid meds he was taking about 1 1/2 hours TWICE A DAY and we had to constantly nag him to eat it. He was telling us, very clearly, in a non-verbal way that he was not liking it anymore. We were starting to worry that one day, very soon, he would refuse it outright and start having seizures.

I tried getting him to swallow small vitamin tablets to see if there was a snow ball's chance in hell that he would take pills. He hated it and kept spitting the pill and a mouth full of water at me. My worry that he was going to stop taking his liquid meds and not be able to take pills was increasing. When we went to his Neurology appointment we discussed giving him pills. Our two choices were Trileptal pills (that is the liquid he was currently taking) and something else that could develop a life threatening rash. We went with the Trileptal pills. I told her how our practice sessions went with the vitamins and asked if he chewed the pills if that was ok because a facebook friend said her child chews his seizure meds and it doesn't affect it's effectiveness. She said it probably wasn't ok for him to chew them. I was not feeling very positive about trying to get him to swallow these new meds and feeling we were on the verge of disaster.

The doctor suggested giving him a candy reward to motivate him to take the pills. We never use food rewards but this was a critical, medically necessary, task that he needed to do. We went shopping with Stephen and picked up a bag of Smarties. That night we showed him the 3 tablets he needed to take and the told him he could have the candy after he took them. He chewed the first one. I thought, oh crap, he's chewing them and the doctor said he shouldn't. I gave him one Smartie after he ate each pill. I was happy he took them but feeling a little freaked out that he chewed them. So I called CVS pharmacy and they said they couldn't find any info that said not to chew them. They gave me number for a local compounding pharmacy and they also told me that there was no info saying that it wasn't ok to chew them. I was sooooo excited!!

I called the Neurologist after the weekend and told her he was chewing them and that I had made some phone calls and was told that it was fine for him to chew them. She said that the price was so high for the liquid that people had been crushing the pills and taking it that way without problems. Why the crap hadn't she told me that at the appointment? I was too happy that he was taking the pills and that he was happy taking them to point out her omission of important info at his appointment.

He has been taking the pills for over a month and it takes a couple minutes instead of over an hour. Once the Smarties ran out he kept taking them without the reward. He did have a break through seizure, a little one, a few weeks ago. We briefly increased his dose and need to get his levels checked tomorrow. He is now also taking chewable vitamins but only if we watch him otherwise he will throw it away. I don't like the idea of gummies because they look like candy. Do any of you know of a chewable vitamin that tastes really good but not so good they will nag you to eat more?

Do any of your kids have issues with taking oral meds? What have you tried? What has worked/not worked?

My son, "The Last Sandbender"

2010-03-25T22:53:00.016-04:00

We bought Stephen his first outdoor sandbox last weekend. Today was only the 2nd time he was able to play in it due to the rain on Monday and Tuesday. These pictures capture just how purposeful "stimming" is for people on the Autism spectrum. Check out the different shapes and movement he creates with the different ways he manipulates the sand.

Here are SOME of the reasons why Autism Speaks sucks

2010-03-17T20:54:00.002-04:00

Click on the link below to see where all the money goes that they rake in each year.

What Autism Speaks does with all that money they make

My Over the Top blog award!

2010-03-01T16:31:00.005-05:00

Thank you Erin for my blog award!

Here are the rules for the Over the Top award:

-Answer the questions below.

-Pass it on to five people.

1. Where is your cell phone? On my desk in front of me.

2. Your hair? As short as I can get it without scaring people.

3. Your mother? Has her heart in the right place and tries her best to help others.

4. Your father? Hard working and caring.

5. Your favorite food? Dried apricots.

6. Your dream last night? Don't remember.

7. Your favorite drink? Coffee.

8. Your dream/goal? Happy and healthy kids that are spared as much trauma in life as possible.

9. What room are you in? Office/dining room.

10. Your hobby? Too many!

11. Your fear? Birds, especially chickens.

12. Where do you want to be in 6 years? Debt free and have a house.

13. Where were you last night. Home.

14. Something that you aren't. Lazy.

15. Muffins? Homemade blueberry.

16. Wish list item? Laptop.

17. Where did you grow up? Maine.

18. Last thing you did? Helped my daughter figure out how to do her homework by herself.

19. What are you wearing? My physical therapy outfit-sweatshirt, t-shirt and sweat pants.

20. Your TV? On.

21. Your pets? 2 cats, 1 hamster and 3 goldfish.

22. Friends? Thank God for facebook!

23. Your life? VERY busy and productive.

24. Your mood? Overwhelmed by all the stuff I did/still have to do.

25. Missing someone? My little sis.

26. Vehicle? SUV.

27. Something your not wearing? shoes.

28. Your favorite store? Walmart.

29. Your favorite color? Pink.

30. When was the last time you laughed? This weekend.

31. Last time you cried? Last night, watching anything emotional on tv gets my waterworks going.

32. Your best friend? My husband.

33. One place that I go to over and over? My computer.

34. Facebook? Yes.

35. Favorite place to eat? My house, at least I know the food is fresh and was cooked in a sanitary way.

Here are my 5 blogs:

Birthday parties and Autism

2010-02-24T13:51:00.014-05:00

We had Olivia's birthday party on Sunday. We go all out for her birthday party for many reasons.

1-We think our kids' birthday party should be THEIR day where they get to be the center of attention and have things their way.

2-We love our kids a whole bunch and their birthday is the celebration of their birth. I know I'm stating the obvious for most of you but you wouldn't believe how many people don't get the connection. Sad.

3-We don't let our daughter play with just anyone. That means she has very few "play dates". I know we are the meanest parents ever but we are not willing to take a chance on something traumatic happening to her by playing with the "wrong" kids.

4-Stephen has really enjoyed her parties and being "one of the kids" and he doesn't really have friends. We have tried inviting kids from his class (which is very small every year) in the past and one kid showed up one year. Plus, we don't want to just invite kids to have bodies at his party. We want to invite kids that Stephen has a connection with and he doesn't have many. We have a party for him every year but it's just friends and family and it's just not the same experience he has at a "real" birthday party.

How is my son, who is severely affected by Autism, able to participate in his little sister's birthday party?

Well, we didn't tell any of the kids he has Autism. Not because we are ashamed or it's some big secret but because we wanted to give Stephen the opportunity to be himself and figured if any of the kids had an issue with his behavior we would do some explaining. Another factor that helps him participate in the party is that Stephen limits his hand flapping, echolalia and other "odd" behavior himself when he is around NTs. We have never stopped his "odd" behaviors or stimming or made him feel ashamed of it and over time he has noticed how other people act in social settings or in public and realizes that it isn't considered "acceptable" so he reserves "really expressing himself' for his classroom and at home. He is able to blend on his own. We feel that if we make some announcement or tell the other kids he has Autism right off the bat they will be looking for him to do something "weird" or automatically not like him because he has been labeled as "different" in their minds. I only heard one child say to Olivia, "Is that your brother?" and that was it. No teasing, no rude remarks or leaving him out.

Another reason Stephen does so well at her parties is that his little sister loves him and accepts him and wouldn't even think of not having him at her party. We have always talked to Olivia about accepting and being sympathetic towards ANYBODY with something that makes them different. We have taught her that everyone is here for a reason and deserves respect and empathy. We have always praised her for being such a loving sister to her brother.

Notice that Stephen, who LOVES candy is the only kid not crawling around on the floor grabbing it up like they'll never have any again!

He didn't like the blind fold but did write his name on the paper "tail" and stuck it on the poster when it was his turn.

I hope that all of the positive, inclusive, experiences Stephen is having now at his sister's parties is preparing him for his birthday parties with his own friends or parties that he will be invited to someday.

How do your kids handle birthday parties, their own, siblings, other kids', etc. ?

Temple Grandin: The world needs all kinds of minds | Video on TED.com

2010-02-24T13:47:00.001-05:00

Click on the link below to watch the video.

Temple Grandin: The world needs all kinds of minds Video on TED.com

If you love someone with Autism put down that chocolate bunny!

2010-02-16T23:07:00.001-05:00

Lindt partnership with Autism Speaks

What to expect when you're expecting-the unexpected

2010-02-09T20:55:00.010-05:00

It's a good thing I've never been the type of person to daydream or fantasize about how I want things to be. Most pregnant women picture a joyous birth surrounded by friends and family. As with my son, Stephen, who was diagnosed with Autism at the very young age of 18 months; my daughter was going to teach me what a blessing it is to expect the unexpected. Expectations of having the "perfect child" puts limitations on happiness for the child AND the parent.

Eight years ago today my daughter, Olivia was born. Within two hours of her birth I was alone and watching her turn blue while I breast fed her for the first time. Pat had to go home almost immediately after her birth to care for Stephen. I pressed the emergency button and a couple of nurses came into my room. I told them that she was turning blue while I breast fed her and they suctioned her lungs and told me that they needed to take her to the nursery to keep an eye on her. They called the pediatrician on call and they suggested just observing her for a couple hours and to call them back.

I told them no. She needed to see a doctor, NOW. The doctor came down from the NICU and came to the same conclusion that she could be observed in the nursery. I told her that I thought there was something seriously wrong with my daughter and that she needed to be in the NICU. She said something condescending about me being a hysterical first time mom, which I was not. I immediately told her that because my labor progressed so quickly I had only had one bag of antibiotics before Olivia was born. I had tested positive for the strep swab and they administer 2 bags of antibiotic minimum during labor before the baby is born to prevent infection during birth. That was all I needed to say to get an immediate transfer for Olivia to the NICU.

I had not shed a single tear while fighting for my daughter's life. I did what I always do in the throws of any crisis. I took care of business and then cried hysterically when I knew I didn't need to be clear headed and strong anymore. On my way back to the room I started crying. I called Pat and told him what had happened and cried some more.

They say that you see people's true colors when the chips are down and this was one of my proudest moments. I was alone, no family was there to welcome my little girl into the world, no husband to back me up. I stood alone against a doctor on the phone and a room full of medical staff and won. It's a good thing I fought so hard to get Olivia into the NICU because once they took x-rays of her lungs they found she had pneumonia. When she constantly spit up everything she ate they did a test to measure the acid and how far it was coming up her throat and found she had GERD.

She probably would have died if I had taken her home or maybe in the hospital. But she didn't. She spent 10 days in the NICU. It brought me to tears to go home without her when I was discharged. I went home and faithfully pumped my breast milk,with a manual pump by hand, every 2-3 hours. Yes, I set an alarm to wake me up all night and all day for 10 days. I needed to do SOMETHING to help her get better and that was all I could do. We could only visit her for about an hour every day while Stephen was in preschool. The hospital was a half hour away. It seemed like 300 miles away every time we got back home and couldn't see her until the next day. We called at least once a day, we didn't want to seem annoying, to see how she was doing.

When she did come home she was having projectile diarrhea. For reals. I would put a diaper under her and the poop would shoot straight out of her. I went through 3-4 diapers everytime I changed her. They took her off one of her meds and the diarrhea stopped. I was able to breast feed her without any problems. Eventually, the two huge scabs on each butt cheek where she had developed a monster diaper rash in the hospital healed. Even with her being so sick and needing so much care and the endless breastfeeding I was so happy that she was alive and home.

She has been on medicine since birth to control the acid in her stomach. Even with meds for her GERD she has had dental problems and bouts of heartburn. She was diagnosed with Asthma a couple years ago and most recently with ADHD. We spent all of 2009 going to specialists to find out what was wrong with her skin. We were told it was Segmental Neurofibromatosis and now that has been tossed out and they think she has some harmless pigmentation issues. Much of her life has been spent taking meds and getting sick a lot and seeing many doctors.

Yet, she carries on day after day. She is so full of excitement. Does she remember how close she came to dying as a newborn? Sometimes I think, yes, she is living like people do when they are dying. I think she knows deep down inside that each day is a gift and not to be taken for granted. Every day is a day to rejoice in the unexpected because it's all we are given. All we have is RIGHT NOW. We can't wait until things are "perfect" or live up to our expectations to feel happy.

I wish more parents could give their children unconditional love. Our children are who they are for a reason. We all serve a purpose and have something to offer this world as our unique selves. I wish the mother who overdosed her 8 year-old son with Autism could have accepted him and loved him unconditionally. Instead, her quest for a "normal" child drove her to take his life and try to take her own when she had to face the reality that he was going to be who he was no matter how much money she had and how many doctors she dragged him to.

Eight years ago today, I never expected I would give birth to a very sick little girl. I never expected she would continue to be a "sickly" child. I DID expect to love her the minute she was born and I held her in my arms. I DID expect to do everything I could to protect, care for and nurture her. She has become a caring, generous, creative, dramatic, energetic and independant girl. I never could have expected such an amazing child, my imagination just isn't that good!

Happy Birthday Olivia!

If you love your child with Autism please read this

2010-02-03T17:18:00.002-05:00

Don't mourn for us

Update-Stephen's ipod touch as a communication device, the dentist and a blood draw

2010-01-22T21:41:00.008-05:00

Stephen is doing really well with using his ipod touch and the app that makes it a communication device!

We took the kids to the dentist last Friday. This appointment was a stellar event for Stephen on many levels.

#1-He breezed through x-rays (hasn't been an issue for him in the past couple of years since I started going in with him).

#2-He sat through a cleaning with the electric device they use! He has not allowed them to give him a cleaning for a couple of years. The key to this being a success was that I asked the hygienist if he could sit up in the chair. He associates laying down with either getting a filling or having a tooth pulled. She wasn't able to do the tooth poking and scraping. I think Stephen also liked the hygienist. She was very calm and patient so I made sure he had her for his next appointment : )

#3-No cavities!!! Stephen has had many, many crowns and fillings since I found a dentist that would work with him. His poor dental health was due to being fed pounds of candy a day while he was receiving ABA for a couple of years when he was much younger and the fact that he wouldn't let us near him with a toothbrush until he was about 6 or 7 without it being a battle royale. For the past 4 years Stephen has not only allowed us to brush his teeth but also likes having his teeth flossed and has learned how to rinse and spit with water : )

#4-He used his ipod to communicate!! He used it to let us know he needed to go to the bathroom before and after his cleaning. After he was done with his cleaning he and I went to the waiting room to wait for Pat and Olivia. My poor little squirrel had another cavity due to her severe GERD that even Prilosec cannot tame at times. He started getting antsy and getting a little vocal so I gave him the ipod and he pressed the icon for "I want to leave". So I said, "I know you want to leave but we have to wait for Olivia and Daddy" He calmed right down.

Later that night we took him for a blood draw at the hospital about an hour before he takes his seizure meds so that his levels could be checked. Just like last year, he sat on my lap and didn't even flinch or make a sound when they did it! There are many, many "normal" kids that freak out when they have to have a blood draw. Needless to say, I was very proud of him for being so brave.

He has been using his ipod touch at school with his classroom staff and it is going really well. His teacher told me that he was doing some math work this week and was becoming upset. She gave him the ipod touch and he pressed the "I want computer" icon and she explained that she understood what he wanted but he had to wait until computer time. He calmed down.

Today, he came downstairs and sat on the couch and kept looking at me and was all smiley. I kept asking him what he wanted. He went into the kitchen and opened the cabinet where the snacks are and I figured he wanted a bowl of Cheerios. I pointed to the bowls and he wouldn't take one. Finally, I grabbed his ipod and gave it to him. He chose, "I want" and "to read a dictionary". I never would have guessed that in a million years based on his behavior at that moment. So, we went up to his room and he pointed to his dictionaries. I told him to take them out one by one. He wouldn't. I pointed to a single dictionary and said,"Do you want this one?" and went to the "yes/no" category on the ipod. He pressed the ,"yes" icon and I told him to put in on the floor. I did this a couple times and he pressed the "yes" icon each time. And then he was able to take each one out one by one and make his pile with just my verbal prompting. Then one by one make them into a pile on his bed. He likes to put together "collections" in a big pile and flip through them. He just stood there looking at me like he wanted me to leave. I went into the "hi/bye" category and had him use the "Good bye" icon and sure enough the minute I closed the door behind me I heard him flipping through his books.

I have always said that many times Stephen becomes the most anxious or very rarely, angry, when he is not able to simply communicate his wants and needs. It's not because he thinks he will get what he communicates it is the ACT OF BEING ABLE TO COMMUNICATE his wants and needs that makes him feel better. We all need to be able to express our wants and needs regardless of whether or not we get those things. Just having others HEAR us and ACKNOWLEDGE that they have heard us and UNDERSTAND us is a basic human need. My son is a PERSON with Autism and he has the same needs to be heard and understood. All of us bloggers who share, vent, entertain and try to lead others know how important the act of just expressing ourselves is to our well being.

The ipod touch, Proloquo2go and echolalia = communication for my child with Autism

2010-01-12T15:53:00.004-05:00

I am over the moon with excitement right now!!! And boy, do I need something to get me excited in a positive way.

We got the grant money for Stephen's ipod touch and app to make it a communication device last Friday. We have been taking our time introducing it to him, mainly because we needed to figure out how it works (we don't need to be the blind leading the blind) and needed to take out unnecessary icons and change some of the labels on the icons, make custom icons, etc. We also don't want Stephen to feel pressure to use it all the time, right off the bat. We want it to be casual and fun and let him decide when he wants to use it along with showing him how it works. We did a demo with him a few times over the weekend. He has been introduced to it more over the past two days at school. He already used it today to request the trampoline and a book.

So, when I read that he used it at school and was very proud of himself I figured I'd try using it immediately when he started to get upset and was doing a lot of finger pointing at the drawer that has his headphones in it. He was getting very upset and almost in tears because I kept telling him "no headphones" and explained to him that they will get broken in his computer like the last two pairs. I made an icon for headphones, but he first tapped the one for music. Makes sense, we have only been letting him use his headphones with his mp3 player since he kept snapping off the plug inside the hole in his tower for the headphones. He was saying, "music". So, I had him tap the headphone icon which says "I want headphones". He continued to get upset and I showed him two icons "sad" and "I feel mad". I had him tap them. He instantly calmed down and went and sat on the couch!

It gets better. He started saying "Popsicle". So, I made an icon for it. He tapped it and it said "I want a Popsicle." and he repeated all the words!! Not just "Popsicle" like he usually says, but a complete sentence. After he ate his Popsicle he said "drink". He went into the "I want" category and then pressed "drink". I showed him the icon I made that said "I want a drink of water" and he repeated "I want a drink of water"!!!! I have always said that his echolalia was him practicing communication and pronunciation. He has been using quotes from movies and songs in the appropriate context here and there to communicate. Now we can make him his own quotes to learn how to communicate in his voice.

This is an important illustration of my theory. The school district has been saying for years that having him use a communication device will discourage him from talking. He is blowing that theory out of the water. Like most of us, he is learning how to communicate by imitating what he hears. He also can read and has a photographic memory from what I can tell. For God's sake, he has been reading dictionaries for years as a hobby. He started reading the adult versions of dictionaries a couple years ago, he picked out his first Merriam-Webster last year at Walmart, the kind that don't have a lot of pictures.

What's great about this device is that it can fill in the blank spots where Stephen knows what he wants to say but can't figure out how to speak it and will give him a model of how to say what he wants to say that he can imitate.

I will try to shoot a video clip of Stephen using it so you can see what I mean.

I am really looking forward to seeing how much he can do with this amazing device : )

Keepin' it real-destroying stuff and Autism

2010-01-05T09:07:00.006-05:00

Stephen has broken 3 pairs of full ear cover headphones in the last month. They all have had the wires ripped off the jack or the wire ripped in half. No idea how it is happening but I'm sure it's an accident because Stephen LOVES his headphones. Luckily, I stocked up on some very cheap, I think they were about $5 a piece, not very comfy, but are better than nothing full ear cover headphones.

He was rocking in his glider, backwards on his knees, two nights ago and tipped it over and hit his forehead on his old fashioned metal radiator. We were so concerned with his head injury of course that we didn't inspect the chair. By the way, he is fine and was left with 2 vertical lines on his forehead but no bumps, swelling or bleeding thank God! I moved the chair to a safer spot that if he continued his backwards rocking, he wouldn't be able to tip it and if he did, he would hit his cabinet with his books and not get hurt badly. So now the back of the glider is the side you see when you walk in his room and I went to get him ready for bed and noticed that one of the rungs in the back was broken in half on one side and sticking out. Thank God for packing tape. We will try to remove the rung and get a replacement dowel this weekend. If we can't fix it than we will get more grant money to replace it.

We just replaced his computer desk because he was picking off the veneer in many areas and had just worn it out.

We have come to accept over the years that Stephen is going to destroy or break things due to his Autism and just being a young boy. He either breaks things on accident, is seeking stimulation, gets really frustrated or if something has a tear or hole in it than he just can't resist picking at it or making it bigger. He also just wears out his books and DVDs from handling them so much.

He has torn apart chairs, stuffies, broken numerous blinds and curtain rods, broken several glass ceiling fixtures in our last apartment, chewed toys (some were Olivia's), chewed or ripped apart MANY earbuds and headphones, picked holes in walls and peeled off the paper on drywall in our last apartment, chewed or bit holes in clothing, broken a few disc drives on his computer, etc.

I let him know I'm not happy about it but it's hard to get mad at him when he can't tell you why he did it. We explain that what he did was wrong and why he shouldn't do it and try to figure out a way to prevent it from happening if he can't stop himself. For example, he loves to open curtains and blinds and look outside. We got rid of the blinds because he just kept breaking off pieces from pulling them apart to look outside. We replaced all our standard white curtain rods with decorative ones that seem more sturdy. We put tab top curtains in his room which slide much easier over the rods. If he needs to be shown a gentler way of doing or handling something than we do that as a way of trying to prevent something from getting broken again.

Intent is a very important factor when responding to a child who has broken or destroyed something. How can I get really upset with him if he didn't intentionally break something or he can't help doing what he did to break it?

So we adapt. We try to create or buy things that are "Stephen proof" or accept that things like books and DVD's cannot be "Stephen proofed" and will need to be replaced frequently.

Are your kids prone to destroying things? How do you respond and why?

My son is not a shell, he's really "in there"

2010-01-03T20:43:00.010-05:00

Anyone who spends time with Stephen every day knows he is intelligent and has skills. Unfortunately, most people don't interact with him daily and take one look at him, his stimming, odd gesturing, body movements, repeating of phrases and whole scenes of movies and sound effects and decide because he isn't engaging them in chit chat or deep conversation and is acting odd that he is an empty shell. This is one of the cruelest aspects of Autism. Many people with Autism are completely non-verbal or have very little verbal skills. For all intents and purposes, Stephen is considered non-verbal. But he does speak. Most of it is echolalia, repeating the same things over and over, his favorites are lines and whole scenes from movies. Most of his communication is single words and a few two word phrases like, "Drink", "More pasta", "Help", "Book", etc. He does academic work at school and is tested in a statewide test like all the other kids in the state. He can read, probably on a higher level than he is able to prove through testing, knows what order the planets are in in the solar system and does basic math.He is able to learn things through imitation, generalize skills, learn new tasks, follow some directions, has independence in many tasks and understands much of what is said to him and shows through his behavior and actions that he is most definitely "in there" if anyone takes the time to notice.

Now I know he is not a genius. But I swear some people look at him and when he doesn't respond to them in the way that they think he should they literally think that the lights are on but there is nobody home.

Stephen with my sister, "Best Aunt in the world", when my family visited last week for a belated Christmas.

I remember when we really started to see he was "in there". He was able to follow some directions and started imitating. He was able to do more things independently. One set of experiences that really got us excited centered around one of his favorite books when he was about 8 or 9. He had this children's first picture dictionary, still has it with a missing cover because he looked through it so much, and one day he started pointing to all the pigs in the book on different pages so we would label them by saying what animal it was. Then all the rodents. Then all the veggies and then all the fruits. We thought, "Oh my God, he is categorizing things!" Then another time we tried pointing to the different animals and foods he had showed us and he said, "pig" when we pointed to a pig. And he said,"Jelly beans.", when we pointed to them. Since then there have been so many other things he has done to show us he's "in there" that I could be telling stories until the sun comes up.

Tonight I had another one of those wonderful moments.

Stephen and I were playing catch on his bed before bed time with these little stuffy Pooh character heads, Happy Meal toys, that had once been attached to key chains. I modified them because Stephen likes to toss things into the air and into other objects to see them bounce off and I figured he loves Pooh and these won't hurt him or anything else when he chucks them. So, we're tossing the heads back and forth and I stop and show him owl and ask him "Who is this?" and when he doesn't respond I say "This is owl." Now that he knows what I want from him I show him Gopher and ask the same question. At first I thought he said, "Cat." So I said,"No, this is Gopher." Then he said, "Catch." I had been saying catch before I tossed the heads to him every time. I think he was telling me to stop bothering him with the labeling and he just wanted to keep playing catch. So we toss the heads a couple times and I hold up Piglet and before I can ask him who it is he says, "Pig." And I said,"That's right, this is Piglet and he is a pig."

I moved to his glider rocker to make playing catch easier.

His lights were off and the fish aquarium light we bought him for Christmas was on so it was kind of dark in his room. I found Roo's head and asked Stephen who it was from about 6 feet away and got no response. I said, "It's Roo." And he said, "Kangaroo."

This experience I had with him and all the other times Stephen has been able to not just speak but communicate in various ways gives me hope that when we get him his ipod touch, that HE, not his biased doting mother that everyone thinks is exaggerating her severely Autistic son's abilities, will finally be able to prove to everyone that he is NOT a shell, but an intelligent, sweet, observant, really "in there" boy.

Happy New Year!

2009-12-31T10:19:00.003-05:00

We hope we can have a year of good health, growth and happiness. We wish the same for all of you in the blogosphere. Happy New Year!

Using an ipod touch and Proloquo2go as a communication device

2009-12-30T09:42:00.004-05:00

Over the weekend Pat got an ipod touch. I was looking through the app advertisements and came across Proloquo2go which is an app that can turn the ipod touch or ipod touch phone into a communication device. A couple of people had mentioned that they had heard of an app that you could use with the ipod touch but I never pursued looking into it becuase I just didn't realize how accessible and affordable it could be. We have been jumping through hoops with the school district and their very slow pace of aquiring something for Stephen and I am sick of waiting! Once I saw the demo video I was immediately excited and wanted to get one for Stephen asap! Click on the link for introductory videos once you get to the website to see what it can do.

http://www.proloquo2go.com/

We are getting grant money to buy the ipod touch, this app, a case and a 2 year warranty which will be a total cost of about $500.00. We won't have to wait for the school district to test out all these archaic devices and wait for the insurance company to approve a device for him. Most AC devices cost $5,000 and up and it's a big production to get one. I will definitely keep you all posted on how Stephen does with it once we get it and he gets used to using it. $500 is not cheap but it is a lot more affordable and an ipod touch and this app is much more accessible to the general public.

Do any of you know anyone who has used this for their children?

Happy Holidays!!

2009-12-25T08:54:00.000-05:00

Hope you are all enjoying this time with your families : )

There goes my mom of the year award....again.

2009-12-21T12:36:00.007-05:00

Anyone who has children knows that it is impossible to project any picture of perfection ....especially in public. Any child is going to test your limits and the limits of what is appropriate behavoir in public.

I don't care and never really have cared what other people think of my family or my son when we go out in public. However, because of his Autism and the tantrums it can cause, we just don't take him out to stores very often, he has not been in a restaurant since he was very little and he has never seen a movie in a movie theatre. We just got used to running errands solo or with Olivia because his behavior was so unruly for so long. We wouldn't take him for a while and then we would give it a shot and it would be a disaster.

We have always been consistent when he has had a meltdown-immediately remove him the the store/situation and not give in.

As Stephen has gotten older he has matured so much and learned how to behave really well most of the time. We have been taking him out more over the years as he has been able to tolerate all the noises, smells and stimulation that being a public place can bombard him with. He has learned that his tantrums will not be tolerated and will not get him what he wants. Over the past couple of years there have been maybe one or two times we have taken him to a store and he has had a complete meltdown.

This ratio of high success to low meltdowns has lulled us into a false sense of security when taking him out. Just like the two seizures he had in the almost 4 years since he was diagnosed blindsided us, this weeks full blown meltdown showed us that we still have to handle Stephen with extreme care and be more sensitive to his triggers when we take him to a store.

We went to Target and got there right before it opened on Saturday morning. We were excited to be there while it almost empty and felt so confident that this would be a problem free shopping trip. Why wouldn't it be? We had all gone to Walmart two weeks before right when they opened and shopped for two hours and Stephen was cool as a cucumber except for the occasional bout of loud echolalia in an annoyed tone to tell us he was getting impatient.

So we had gone to the book/movie/music section of Target and Pat stayed there with Stephen and Olivia and I went to hunt down a Mr. Potato head for my friend's son for Christmas. Pat and Stephen caught up with us and Pat showed me a Golden Books 65 year anniversary collection that Stephen wanted. I looked it over and said no. He has had every single one of those books individually over the years and had not shown any interest in them over the past year and I had donated most of them. Of course, the fact that Stephen is so picky, can't verbally tell us what he wants most of the time and his adorable little face made me put it in the cart. And immediately I changed my mind and made Pat take him to put it back.

That was a bad mommy move and boy did I pay for it soon thereafter.

Pat came back with Stephen and the books. I took him back there myself and a battle royal ensued. First, Stephen dug and then scratched the backs of both my hands when I tried to make him leave the area. Then he was screaming full force and pulled on me and was acting like the stone that could not be moved. I ended up calling Pat's phone and he came over and walked BEHIND/BESIDE him all the way out to the car while he screamed and carried on.

I was waiting for security to tackle Pat and accuse him of kidnapping. Luckily, this has never happened but you have no idea how hard it is to get a tantruming 11 year-old out of a store without a lot of very concerned eyes on you wondering if they need to intervene in what looks like a possible kidnapping.

I didn't want to give into the tantrum because we never have. Stephen is going to be a full size man some day and we don't want to have to deal with man size tantrums!

WTF just happened?!!!

Number one-Stephen just really wanted those damn books. This could not have been predicted or avoided.

Number two-I put the books in the cart. That is Stephen's signal that we are going to buy him something.

Number three-I took the books out of the cart which basically told Stephen that I was a horrible mother because I made him think he was getting his precious books and then snatched them away. Bad mommy.

I never should have put the damn books in the cart. That must have been very confusing for him. But I also didn't want him to think he was going to be able to get his way after freaking out and hurting me so we had to stick with the decision to not let him get the books and follow through with removing him from the store.

Would Stephen still have had a meltdown if I had never put those books in the cart? Don't know. Autism is like a box of chocolates, you never know what you're going to get. This kind of experience made me realize once again, how unpredictable Autism can be. Yes, I will continue to be happy about and celebrate all the times he is well behaved and we are able to go about our business in a store without incident. However, as this little scenario illustrates we need to always be on our toes and never assume that he isn't a very sensitive and very unpredictable boy.

This story does have a happy ending. After spending about 15 minutes in the car with Pat and Pat driving to another entrance in the mall, Stephen was back to his calm self. We sat on a bench inside and waited for Hallmark to open. He was very affectionate with me. He found a little Dr. Suess quote book and I bought it for him because I knew I was a twirp for what had happened in Target. I also had a $5 off coupon! But Stephen thinks he got the book because he was being calm and well behaved.

Later that night when we got home I found that Golden Books collection on line and got it half off with discounts and free shipping. I'll save it for his birthday so he won't think he got his way. I know I had a moment where I goofed as a mom.

Being a good parent is being able to admit to your kids you messed up and that you are sorry.

I hope he gets that message when he opens those books up on his birthday : )

Winter, OCD, germs and handwashing

2009-12-17T10:01:00.011-05:00

How old do you think this person is? 60? 70?

Try 37. These are my hands today after I cleaned the cat litter box and the downstairs bathroom. It isn't even 10:30 am and I still have a day full of more hand washing ahead of me. Oy. Winter means bleeding, cracking and stinging hands after applying lotion. Some might call me a germaphobe. I have not been diagnosed with OCD. Whatever the reason, I wash my hands a lot. I have lotion pumps in every room in my house except the basement, attic and the kids rooms. I wash my hands before preparing food, after preparing food, before serving food with my hands (if I will be touching the food like brownies) after touching anything that is not clean (which means everything), before I eat, after cleaning anything dirty or germy (which means everything), after cleaning with sanitizing wipes or sprays or any spray that has chemicals in it, after going to the bathroom, after touching the dirty laundry to put it in the washing machine, after I get home from being out, before unloading clean dishes from the dishwasher, after loading the dishwasher with dirty dishes, etc.

I already try to group doing "dirty" things so I can cut down on hand washing but clearly that isn't working. I put lotion on and then it gets washed off before it can sink in. I have a box of sterile gloves in my bathroom for suppository insertion (Stephen can't take oral meds when he is sick) and I think I need to start wearing them. I don't think my level of hand washing is unreasonable. I just know how germy everything is and don't want myself or my family to get sick.

Am I the only one that washes my hands this much? Does anyone else have this problem with super dry bleeding hands in the winter?

Autism and stimming, echolalia

2009-12-16T08:48:00.009-05:00

Here is an example of Stephen stimming, for a about 2 minutes before I shot the video, and how he is able to stop and clean up without becoming upset. I think he was upset with me telling him how to do it, LOL! I am known for being a control freak, I mean bossy, I mean assertive. This used to be a basket that had soft toys in it that we designated as appropriate for him to toss in his room. He wasn't using it for about a year so we put cat toys in it and put it in the living room. This is the first time he has done this with the cat toys since we repurposed the basket and moved it to the living room.

We have never restricted his stimming, unless it was a safety issue or inappropriate in what he was doing or in a particular setting.

This video shows Stephen fidgeting or stimming with his necklace. If any of you parents know of a more stylish but just as fun necklace that I can make or purchase, please let me know! He is also exhibiting his echolalia, repeatedly saying the same thing over and over. This clip shows him quoting Dr. Seuss's "The Hoober Bloob Highway" . Those of you familiar with this movie will probably be able to make out what he is saying. I think he likes that particular movie so much because the baby is given a choice of who they want to be and I think, from various things that Stephen has been expressing lately, he wishes he were more "normal" : ( When I shot a bunch of these little clips yesterday he got upset watching himself. Have any of you with older children with Autism had this experience? Have your children as they have gotten older started to realize how different they are and been upset by it?

Autism is the mother of invention Monday-Family Christmas card photo

2009-12-14T15:15:00.011-05:00

Most parents of children with Autism or special needs have had at least one instance where they have had to get creative to cater to their child's needs. Pat and I are blessed to be creative, do-it-yourselfers. We have had to build something ourselves or use something store bought in a way that it was not intended to be used in order to meet our son's needs, keep him safe, etc. When he was little we had to build a custom gate that was higher than anything that could be purchased in the store so he wouldn't wander around unattended at night if he got up while we were sleeping. We had to create a barrier for the middle of the back seat of our car to keep him from hurting Olivia when she was very little (we have a car with a 3rd row now for the rare time he is in a bad mood). We have created "curtain rods" from thick wooden dowels and used big hook screws to hold up our "curtain rods" so we would be able to have curtains that were not easily pulled down. The list goes on......

Every year we do our family portrait in front of our tree for our Christmas card. In our family there are very few opportunities for family traditions. We never know if Stephen will tolerate certain situations or be able to participate in the same traditions year after year without getting upset. Our family portrait in front of our tree has become one of the few traditions we have that Stephen has been able to be a part of which is why it is so special. And we look forward to it every year. It's one of the few times we get to do something that "normal" families do.

Now I know that getting that perfect photo with the any kids, special needs or not, is no easy feat. But maybe because we are able to get that perfect shot year after year, despite extra special circumstances that Stephen's Autism presents, makes us feel a huge sense of pride. Our "perfect" family portrait also represents how we have managed to thrive and be such a loving family in the face of all our challenges.

Here are some of our past family portraits-

We have different techniques for coaxing a smile out of Stephen for these photos. It's not that he doesn't smile spontaneously on his own. He smiles all the time. He just doesn't smile on cue. He is not capable of a fake smile. When Stephen smiles it is completely genuine. So I always feel a little weird trying to get him to smile for our family portrait. We have tickled him, put the camera right in front of the tv with a show that he likes on, sang silly songs and acted goofy, etc. Even though we are doing things to get him to smile, make no mistake, it is still a genuine smile. When he smiles it is because he is really happy or excited.

Well, this year we just couldn't make it happen. Either Olivia, Pat and I would be smiling and looking at the camera and Stephen would be looking very unhappy, had his eyes closed, etc. or Stephen would be looking right at the camera and we would all be out of focus. We took as many family portrait photos as he would tolerate in front of the tree and figured we could work with at least one of them. I went to Walmart.com to make the cards and just couldn't use a single photo and feel good about it. Then I saw that they had a layout with 3 photo frames. Pat suggested we have Olivia take a picture of him and I for the middle frame, we'd use a photo I had taken of Olivia in front of the tree and Pat and I would go up to Stephen's room and take a photo of him there. Sure enough, Stephen was much more comfortable in his room, in front of his computer and with a little foot tickling by Pat we got a great photo of him.

Although we are a little sad to say goodbye to our old tradition we now have a new one. This new way of composing our family portrait for our Christmas card is more in line with how we feel about real happiness in life. It's not about looking perfect. We don't believe in form over function. We are definitely concerned with cake and like frosting but know that too much will make you sick. Style will never be more important to us than substance.

I have a new sense of pride with this year's Christmas card. I think our photos look great this year not because we were able to get that "perfect" shot which is so coveted and sometimes unattainable even for families with "normal" kids or looking like the "perfect" family for a millisecond but because our challenges bring out our creativeness and not just ability but WILLINGNESS to do whatever it takes to have a happy and healthy family. We don't just look happy, we really are happy : )

If you are injured in an accident, call a lawyer!

2009-12-09T14:44:00.003-05:00

Seriously. This was one of the biggest mistakes I made after I was injured in my accident. If I had consulted a lawyer they would have told me to seek treatment and not stop until I was fully recovered or had done everything I could to recover and was not getting any better.

Now I have a "gap in treatment". Gee, wonder why. I am the ringmaster of my own little three ring circus. I had a ruptured ovarian cyst that could have killed me, moved, had other tests when they found a cyst on my kidney in the MRI I had done after my accident. My daughter was seeing a different specialist a couple times a month. She was sick with pneumonia and I had to keep her home for days everytime she got sick.

I had a doctor that never referred me to the appropriate specialist, I was just told to get an MRI and when it came back "clean" was told I could go to a chiropractor or PT. I didn't like the idea of a chiropractor so I figured I'd try PT. I scheduled my first appointment which I believe was a month away from the day I scheduled it. I had to cancel it and never rescheduled because I didn't trust them to not mess me up more without me being examined by a specialist. So I just lived with the daily pain and stiffness and figured it would go away. Why shouldn't it? I was fit and healthy and had never had problems with my back or leg and foot before the accident. I also tried to be positive and think about how much worse it could be but wasn't. I also figured that after a couple of months of not seeking treatment that I wouldn't be covered by the insurance. Well guess what, I'm in more pain now and now the insurance company is telling me that my claim is closed! However, I have not reached a settlement witht the other parties insurance because I am still seeking treatment.

The lawyer I consulted with told me that after a year, I can't prove that there is any correlation between my current back pain and cramping/pain in my right buttocks accompanied by hamstring weakness and foot numbness. Apparently, it is perfectly acceptable for the other parties insurance to assume that I did something to my body after I stopped treatment that is giving me these symptoms. He said we can fight it but the ""gap in treatment" will make it very difficult. Hmmm. I was healthy, very active, exercised and pain free before my accident and after it I have never been the same and am plagued by chronic pain, muscle weakness and numbness. Gotta love the insurance companies.

So I am trying to focus on just getting treatment and hopefully regaining my previous healthy and pain free existance. Don't be a fool like me. If you are injured in an accident, call a lawyer!!!

PTSD?

2009-12-07T11:15:00.004-05:00

As I mentioned in my previous post I had a car accident in November 2008. I was rear ended while stopped at a red light. I suffered a back injury and have had problems with my right leg and foot. As if the pain of being injured wasn't enough I have come to realize how much I have suffered emotionally and mentally from my accident.

I am afraid of not only driving but also riding in a car. Because I was rear ended I am constantly afraid of it happening again and getting injured again whenever some one is driving too close behind me. This happens A LOT. Am I a magnet for people who don't understand that you shouldn't drive that close to people? Am I just hyper sensitive and that is why I notice it more than someone else? Every time I come to a yellow light I go into a panic. Should I hurry up and get through? What if it just turned red and I am almost to the light, do I slam on my breaks? I look in my rear view mirror to see how close the person is behind me to help me make the decision. Every intersection with a traffic light causes me stress and panic. Even a 5 minute ride down the street leaves me shaking and stressed out.

I refuse to drive in a city or on the highway. I schedule all appointments that require driving in these areas on Friday so Pat can drive. This is usually a day off for Pat and the one day we could have "alone time" without the kids. Regular followers of my blog know the constant drama we have and understand why this is a big thing to sacrifice. I'm also constantly telling Pat how to drive and look out for this car and that car, etc. Needless to say, he is being affected by this too.

I constantly look for reasons and excuses not to drive. Even lure of freebies and really good coupon sale matchups aren't enough to get me behind the wheel lately. I maybe drive one day a week and try to do as much as I can while I'm out so I don't have to drive again for a while.

I get startled when I hear the noise of an accident on tv and in movies. I don't even want to look at car accidents on the tv or on the side of the road. It freaks me out.

My pain is a constant reminder of the accident and the potential to be injured, maybe worse next time, by a car accident. I have been in a couple other accidents and have never had this reaction. I have always been able to "get back on the horse" so to speak.

I saw my Dr. because of my physical injuries and mentioned all these symptoms to her. She thinks I have PTSD, Post Traumatic Stress Disorder. I am trying to get an appointment. My insurance company is starting to be a pain in the butt, pun intended, and the other party's insurance (she was at fault) has already called about a settlement. I have no idea what the hell I am doing or how to handle the insurance companies so I am off to see a lawyer tonight. I will have to drive at night. I am already anxious and trying to mentally prepare myself. Hopefully, finding out what my rights are will give me some piece of mind and help me get the treatment I need without getting screwed over.

If you focus on the rain you might miss a rainbow

2009-12-03T08:34:00.011-05:00

I've become quite a recluse in the past year. Since my accident in November of 2008 I have had pain in my back everyday. I can't get comfortable and everything makes it hurt. Sometimes I get severe muscle cramping in my right buttocks that creates weakness in my thigh and cramps up my calf and makes my foot go numb. All this physical pain reminds me of my accident every day. I avoid driving. It just plain scares me. The world in general scares me. I have suffered a lot in the past and dealt with a lot of jerks and scary situations. Since my son's diagnosis of Autism we have had to fight so many battles with the school and other people's ignorance. But somehow I have developed a positive attitude about life. I really try to find the silver lining.

But my accident has really done a number on me. The world outside my door has come to represent endless opportunities for pain, frustration, injury and death.

I think God was trying to tell me something this morning. Something that I really needed to see.

I went to put Stephen on the bus and this is what I saw.

A big ole tree limb had fallen where we normally have our car parked. I thanked God Pat had taken the car to work this morning. This freaked me out when I thought of what could have happened to our car if it had been parked there. But it wasn't. God spared us that drama. This fallen tree limb symbolizes how I have viewed the world lately. Full of potential drama, disaster, damage and things that could make my life more difficult.

And then.....

I went to put Olivia on her bus and this is what I saw.

A flippin' rainbow! This is what God wanted me to remember that I have forgotten. The world outside my door does offer the possibility of rain and fallen tree limbs but there could also be rainbows. If I never leave my house I could be avoiding not only the painful things out there but also the wonderful things.

I also think that this experience clearly illustrates that even when we are going through pain or hard times there is always some lesson that can be learned or something wonderful that comes out of it that we never would have expected. I guess I have to start stepping out more often or I could be missing a lot more rainbows.

How many doctors does it take to diagnose my daughter's skin disorder?

2009-12-02T11:26:00.006-05:00

I'll let you know when she's 20!!! Seriously, that seems to be the consensus. The 2 appointments to the Geneticist in the past year gave us the diagnosis of Segmental Neurofibromatosis but she said 100% certainty can't be reached until she is an adult. The appointment with the Neurologist gave us the same diagnosis. However, she suggested taking her to a Pediatric Dermatologist, when I brought up the missing pigment she has on her left shoulder and left side of her neck.

So, the Pediatric Dermatologist we took her to last week says she has THREE different things going on with her various skin markings! I am not kidding! She thinks that the large cafe' au lait spot that goes from the underside of her left arm starting at the elbow onto her left chest and left side of her back with the gazillion freckles in it is Unilateral Nevoid Lentiginosis or the other name for it, Segmental Nevoid Lentiginosis. She thinks the missing pigmented areas are Nevus Depigmentosa and the small cafe' au lait spot on her right calf with the moles in it is Nevus Spilus (it occurred to me that it looks like a chocolate chip cookie while the nurse was taking photos, lol). One new discovery she made is a lightly depigmented area on her left eyelid when she examined her skin with a Wood's lamp (looks like a black light). She said that it could mean that her missing pigmented areas are Vitiligo but they would have to be white for that diagnosis which might develop later.

In conclusion she said that all the different things do not have complications or any negative side affects. However, when I asked her if she was sure about this not being Segmental Neurofibromatosis she said we wouldn't know until she is about 20! For reals, people. So we just have to wait and see what does or doesn't develop.

She said we don't have to do any more hearing tests or Neurology check ups which is good. Lord knows we have enough other issues to keep us busy!

Why I hate the "R" word

2009-12-01T08:48:00.009-05:00

This topic is a thorn in my side, a bee in my bonnet and every time I hear the words retard or retarded I want to scream or break something. Just typing those words, which are so offensive to me, makes me feel like I am committing some horrible crime against humanity. I am all for freedom of speech but those words and there common usage to describe someone or something as uncool, stupid, lame, bad or less than human makes me feel that they are just as bad as the "N" word or any other hateful slur.

The "R" word is used because people fear being different, dependant and defenseless. They use the word in an attempt to distance themselves from something they know deep down inside they have every chance of becoming due to stroke, drug and alcohol abuse, illness, traumatic brain injury from war or an accident or old age.

I love my son. He is very special and precious to me. I am overflowing with pride at all the things he has accomplished in the face of all his challenges. He has taught me so many things and made me a better person. The fact that anyone looks at him with disgust or hatred for being mentally challenged makes me angry, sad and fearful.

I'm angry because most people still pepper their conversations with the "R" word like it is no big deal. Even people close to me use it. I get tired of telling them not to. They should know better. These are people who know and love Stephen. But the fact that they say it to me and probably everybody they know shows you how accepted it's use is in our society. I have very rarely used the word and when I have it has been in reference to other's use of it and how much it upsets me. I never said it before I had Stephen. Now, I swear like a sailor but I won't use that word or any other slur against a group of people. All those hateful words have always disgusted me and I have never used them and don't understand why others find it necessary. I judge people as individuals. I don't discount or hate whole groups of people based on their skin color, sexual orientation, weight, mental and physical challenges, etc.

I'm sad because the people who use the "R" word are reducing all people with mental challenges to something less than human. It is spoken with the intent to insult someone or something. It is not a positive word no matter how you look at it. My son is one of the sweetest and well behaved kids I know. And he has every excuse not to be. And even if he wasn't so well behaved because of his Autism, he doesn't deserve hatred or disrespect. I see some of the worst behavior in "normal" kids on "Supernanny" and those kids know better. They are usually the result of horrible parenting which is preventable. My son did not ask to be born with Autism. He can't help his odd, repetitive and obsessive behaviors. My son is trapped inside a body that won't act the way he wants it to. He knows he is different. How cruel is it that people target and pick on and hate on people like my son who can't verbally respond to their ignorant comments?

I think that people who use the "R" word are saying more about their own emotional and intellectual impairments than the people they are describing.

I am fearful because the prevalent use of this word means my son is a target for abuse, neglect and worse. What is going to happen when I and my husband die? Who will protect him from this rampant hatred of people with mental challenges?

The next time you "slip" and use the "R" word or brazenly pepper your conversation with it in an attempt to be funny remember you are spreading hatred about people like my son, a vet who has a traumatic brain injury from being in a war, somebody's loved one that had a stroke or Grandma with Alzheimer's. Remember, someday, when someone uses the "R" word they could be spreading hatred about YOU or someone you love.

I haven't been blogging for months. Sometimes I feel like there is no point when I don't get any comments on my posts. I assume no one is reading what I write. I figure unless something "amazing" or "exciting" is happening with my life than there is no reason to blog about it. Then, I read and see all the negative things about Autism and people with mental challenges and I realize that is exactly why I need to keep blogging about our mundane life with Stephen. It IS "amazing" and "exciting" that I have a loving family that functions and thrives because of all our challenges in this hateful dysfunctional world. I need to keep showing how wonderful our life with Stephen is because it just might change one person's view of people with Autism and make them stop and keep their mouth shut when they are tempted to say the "R" word. Maybe just one person will use one of the millions of words in the English language to more accurately describe something bad, uncool, stupid, lame or less than human without insulting millions of human beings that need and deserve our love, patience, protection and understanding.

Olivia at the Fall Festival

2009-10-24T13:14:00.017-04:00

We bought the vampire teeth right before we went and they are clearly made for an adult. They are soft rubber and I will be trimming them down before Halloween.

Olivia with her friend Domenick

Trunk or Treat

Waiting to go into the haunted classroom.

I love it when I don't have to squeek to get the grease

2009-10-24T12:53:00.003-04:00

Well, Stephen came home early on Wednesday because he threw up at school. It was totally random. He was just sitting there and then he ran to the bathroom. The fact that he knew to go to the bathroom is a plus. He hasn't thrown up much in his life, thank God, and when he has it has usually been with a seizure. We have only been able to get him to the bathroom a couple times before he has thrown up. He was fine right after and no signs that it was seizure related. I kept him home on Thursday just to be on the safe side.

I got a call on Thursday from my daughter's school principal, she is also part of Stephen's AT team because she used to be the PT and has training to do this type of evaluation, and she said that they would be bringing some devices to the school on Friday. Well, I talked to the teacher on Friday and she said they had postponed it until Monday. Hopefully, this is not the start of more delay tactics. I asked the principal if he was going to be able to bring the device home and she said yes. I also asked whether or not we would be able to get one through our insurance that we would own once they found one that worked for him and she said yes. All good so far. Now, I am hoping that he will take to something and be able to use it to communicate. Prayers and finger crossing are welcome : )

I have found many many times in my life that when I am trying really hard to make something happen and it isn't that I need to let go and let God. And sure enough things come to me and my family that we need. I have learned to get up everyday and go with the flow. Yes, I plan ahead for as much as I can but I remain open to things not going as planned and accepting it because I always find out later that it was for a good reason. Does this happen to any of you? It has made my life so much less stressful and strengthened my faith that God is out there and knows what we need better than we do and is always guiding us down the path we should be on. Even the "negative" times in my life happened for a reason, to teach me something I needed to learn or make me appreciate the good times more when I have them.

Don't believe the hype! My universal healthcare crusade

2009-10-19T10:37:00.004-04:00

I just watched "Sicko"twice this week. The first time I watched it by myself and cried harder than I have cried in a long time. If you have a heart in your chest that is beating you can't help but be disturbed by the content of this movie and how it exposes the health insurance companies as nothing more than corporations out to make as much money as possible while injuring, making sicker and killing people in the name of profit. I have become obsessed with researching this issue. What I am finding is making me want to shout from the hill tops that others need to stop believing all the lies and propaganda about how universal healthcare would be worse than the system we have now.

Do you realize our country is ranked 37 in the world for healthcare quality!!!!???

We spend the most per person on healthcare and we are the only industrialized nation without universal healthcare! If it is such a horrible system than why are we the only ones without it!?

Why should you pay for other's care? Because it is the right thing to do! I believe we are judged as a society by how we treat the least among us. I also believe healthcare is a RIGHT. I have actually had people who identify as Christian say to me,"Why should I have to pay to take care of other people?" Hello! Hyprocitical!

Plus, we already have free services that are paid for with our taxes and private contributions-free library, free police and fire service, free mail delivery and free public education. I guess if you are so against free healthcare for all because you are going to have to pay for other people to access it than you are probably willing to get rid of these free services and institutions as well. Yeah, right. I don't see that happening.

If everyone got more preventative care and sought help for minor ailments before they became seriously ill it would save money on healthcare and we would be a much more productive and happier country.

Even people WITH health insurance are allowed to become sicker or even die because they are being denied care for things as serious as cancer treatment and life saving surgery so the insurance company can make a boat load of money. Isn't health insurance there to help you when you are sick or injured? Can you imagine being forced into bankruptcy or foreclosure because you are trying to pay medical bills not covered by your insurance? Can you imagine watching a loved one die because the insurance company is refusing the treatment their doctor is recommending they receive to save their life!!??

I have been researching and talking my hubbies ear off about it since my first viewing. All of my research has convinced me further that we need universal healthcare now!

I watched it a second time with my hubby. Now he understands my motivation and obsession with this topic. My hubby is not as easily upset and driven to action as I am and after seeing "Sicko" and listening to the other info I have gathered, he is on a mission to talk to anyone who will listen about this issue.

Our family is poor enough that we have free health insurance funded by the state. As any avid follower of this blog knows we have 2 kids on medication and they both have visits to specialists frequently and have had a lot of dental problems. My children would be very sick and we would become homeless trying to pay meds and for insurance through my husband's employer. My husband works for a very small company and that is why the health insurance is so expensive. I don't know what we will do when one day we make a penny over the cutoff for income and have to start paying for health insurance and co pays and deductibles...it makes my heart and head hurt just thinking about it.

Have any of you had problems with being denied care by your insurance company or God forbid, known someone who died as a result of a denial of care?

Do any of you not have health insurance and if so how has this impacted your life and the decisions you make in seeking treatment or not paying bills so you can afford medicine?

The squeeky wheel is demanding the grease

2009-10-19T09:16:00.002-04:00

So, I'm sick of making phone calls to the Special Education director in my school district about where the imaginary evaluation report is that was done for my son to get a communication device! No more Mrs. Nice Gal!! I have had it with the phone tag! It's time to start writing letters and documenting the intentional delay.

I tried calling my son's pediatrician for a referral to someone to do an AT eval outside of the school. This guy turned out to be a dead end and was so negative about the subject that I regret talking to him at all. Buddy, it's time to find a new job when all you can do for a desperate parent who is just trying to find a way to make her son's life better is to try and talk her out of pursuing it!

Outside of starting a paper trail and possibly filing a complaint with the DOE we are exploring cheaper and more accessible alternates to the traditional AT devices. My wonderful friend Jenn gave us a kids' speaking dictionary that was her son's that he no longer uses. Peeps, it is a $60 toy that has a voice output!! It is a Franklin Speaking Dictionary and can only be found online. You can type in a word or sentence and hit speak and it talks for you!! The words it has is pretty limited so we are looking at the Collegiate version which is about $100 new on ebay or cheaper if you buy it used. I will definitely let you know if the Collegiate version is worth purchasing once we get it and try using it with Stephen.

Even if we get him a more expensive AT device I worry about how difficult it would be to replace if it broke. At least if we can have him use one of these speaking dictionaries and it craps out it is much more affordable to replace!

Stephen is doing great and I think some of it is because he is using his trampoline A LOT now that it is in his room. We have it right next to his computer and he will listen to whatever he is doing on the computer with his headphones and jump on the trampoline at the same time. His legs are getting quite buff! He has broken his addiction to the Internet and is now into watching movies on his computer and likes to turn on the subtitle feature which I think will help with him learning how to type his needs and wants on a communication device.

**UPDATE**

His wonderful teacher just called me and said that she spoke with the OT and the vice principal in our district that were part of the team that did his AT eval and they are supposed to have something in writing to her by the end of the week!! They are also recommending a voice output device....hopefully not something archaic. I am optimistic but not holding my breath. I will hold off on my letter writing blitz for now....but if they don't follow through by the end of the week, look out!!

Olivia's MRI results looked fine according to her Neuro so we will just follow up with her in six months : ) She has been doing great in school and not had any more issues with the teacher since our little drama at the beginning of the school year. Yay!!

I cut of all my hair. I love it! One less thing to deal with and worry about : )

Alive and kicking!

2009-10-05T06:44:00.029-04:00

We are all still here! I know I have been MIA for a while. Lots of good things to report!

My dad and stepmother Cecile visited from Maine. We hadn't seen them in years and it was a great visit!

Pat went to the NASCAR race in NH and had a blast! I got him a pit pass and he was in heaven being so close to all the equipment and hung out at Jeff Burton's pit box.

He gave a picture that Olivia drew of her favorite driver's car, Jeff Gordon, to his pit crew and they put it in his pit box.

Olivia made it through about 45 minutes of her MRI before she started crying and getting really upset. Pat took her to the appointment because they were going to the ginormous fair that is a big deal in this area every year. No big surprise, she was a daredevil and went on rides that would make an adult wet their pants!

We are supposed to get a call from her Neuro this week with the results of what they were able to scan. We know the cervical scan was normal. Depending on how much they were able to scan and the results she may or may not need to do another scan under sedation.

Stephen has been doing great and not had any seizures since we increased his meds. I spoke with the Neuro and she said that it sounds like he had a complex partial seizure which is a relief.

We got his state testing results from last year and he is progressing and got all 3's and 4's (4 and 5 are the highest in different categories). Go Stephen!!

He started working in the school library which is going very well and he gets to take home a library book everyday. Of course, he has always picks a Mother Goose book ; )

I am back from my mental vacation and have been very productive. I finally started listing all the kids outgrown clothes on ebay. We dismantled the sensory room because Stephen wasn't using it and turned it into my office/craft room. We packed everything else away, except the tote of sensory toys which is in his room, in case he seems interested in those things again. We switched bedrooms with Stephen. We didn't need all the space in our room and now that he has our room there is room for the trampoline which he is using now that it is in his bedroom.

I think that it was really important to listen to my mind and body and take a break and be lazy when I felt like it. I think we all get overwhelmed and exhausted mentally as parents, especially when we have kids with multiple issues. As long as it doesn't turn into a downward spiral which I think can happen for some people. I know myself and I know that I have a week here or there where I've just had too much on my plate and it's time to take a break.

Do any of you have those "mental vacations" where you just want to lay around in your jammies all day and watch tv or play on the computer?

Siezures and doctors from hell for my kiddos

2009-09-19T14:01:00.003-04:00

Yesterday was not so good.

First we took Olivia to the Opthamologist that we had taken Stephen to when he was first diagnosed. Back then he put dilating drops in Stephen's eyes and then wondered why he couldn't get near him to do an eye exam. Maybe because he was 2 and has Autism and after having those wretched drops put in his eyes everything looked even freakier than it already did. The guy was a butt. Nothing had changed when we took Olivia there yesterday. She has already been seeing my eye doctor for her yearly exams for the past couple of years but the geneticist that diagnosed her with Segmental NF-1 insisted we take her to see him. She wanted him to look for the Lisch Nodules and optic gliomas.

He walked into the exam room where I was seated with my hubby and Olivia was in the exam chair and said "How are we today ladies?". My hubby shot me a look and said to me under his breath,"I'm not the one wearing the pink shirt." He was very curt and without asking our permission quickly put the drops in her eyes and shooed us away to the waiting area where we waited for the drops to kick in. He did this to every single kid in the place. After looking at her eyes he said everything looked fine and her vision test was fine. He then told us that we could follow up with her regular doctor. This inflamed me! This guy's office is a half hour away and in the city I won't drive in so I had to make the appointment for a Friday when Pat could drive. Our regular eye doctor is five minutes from my house and isn't a jerk like this guy.

So her eyes were still dilated when she went to bed last night. Hate those drops.

So we went to BJ's after her appointment and got home and did some relaxing until Stephen got home. Everything was going fine until about 5:30, a half an hour after he had his seizure meds. He was sitting in his chair in front of the couch where Pat was sitting and they were watching "The Cat in the Hat". Suddenly Stephen put his hands over his ears and Pat called over to me, I was sitting at my computer in the next room and could see Stephen. Stephen then started to rub his earlobes. Something wasn't right with how he was acting but because of his Autism I wasn't sure if he was just doing this stuff because of his sensory issues. I got up and went over to him and he started touching his throat and gasping and clearing his throat and I was starting to think this could be the beginnings of a seizure.

I brought him into the bathroom and figured if it was a seizure he would start throwing up. He didn't. He started picking at his collar and turned slightly blue. I told Pat to check the time. If it lasted 5 minutes or more than we would have to give him the Diastat. Normally he would throw up and turn blue and go limp and be unresponsive until he came out of it. I went to lay him down but his body was stiff and Pat had to grab his feet and lift him up while I held him under his arms and we lowered him to the floor. While we were lowering him his eyes were going to one side. He didn't lay his head down easily and I grabbed a towel off the rack and put it under his head. All we could do was sit there and watch and tell him everything would be ok. He picked at the rug and we kept trying to get him to respond to us by talking or somehow indicating that he was coming out of it. About 1 minute before we would have to use the Diastat he started to repeat words back to us when we spoke to him.

We picked him up from the floor and had him sit on the couch. He started to fall asleep which is always what he wants to do after a seizure.

I called the doctor's office and requested a call from the doctor on call. He called me back and I told him what happened. He said it was definitely a seizure (tell me something I don't know) and I told him that the reason I was calling and concerned was that he has never had a seizure like this one. He said this would be considered a convulsive seizure because he was moving uncontrollably (smacking his lips, picking at his shirt and the rug). I found this unsettling. This might mean that there is a different part of a brain having seizure activity. When he was diagnosed with Epilepsy it was with complex partial seizures which is different from convulsive. I didn't go into these concerns with this Neurologist because I can discuss this with his regular Neuro on Monday. He recommended upping his dose of meds from 6 ml. to 7 ml. which I am comfortable with. I also told him that we had just seen his Neuro for a check up and hadn't gotten his levels checked and he recommended getting it done in two weeks right before a dose to see how low his levels are going.

I don't think it's any coincidence that he had a seizure a half hour after his evening dose. He last had a dose increase over a year ago when he had his last seizure. I am curious to see what the Dr. says about the fact that this was a different kind of seizure.

Have any of your kids had different kinds of seizures?

I'm on a mental vacation....

2009-09-10T16:21:00.005-04:00

To keep me from going mental! I'm just exhausted mentally. I already have a brain that never stops running off on tangents and likes to jump from one task to another and when you add any other strenuous mental activity to its already hyper nature it gets REALLY TIRED. I swear the older I get and the more time I spend alone the more I wonder if the sensory sensitive, people avoiding person I have been the past year is who I have always been.

I have been through many phases in my life. I spent many years starting in junior high and through high school trying to find friends and figure out where I fit in. I never fit in. I did sports, poorly but got social interaction from being involved in them. Plus, I have always enjoyed the sensory input of being physically active. I had very poor social skills but managed to make "friends" in different social circles. I still preferred to be alone. I went to a very liberal private college and went wild! I made many friends but again never really felt like I fit into any particular circle COMPLETELY. I was very sensory seeking in college and in my twenties. Lots of people and lots of noise were exciting and interesting to me. I think I was running and running hard away from things that bothered me about myself. I was a mess.

When Stephen was diagnosed with Autism at 18 months we had people in and out of the house every week day. I had to take him to play groups for social therapy. I had no choice but to interact with people. I was also still working at this time and forced to deal with people. Once I became pregnant with my daughter and became a full time stay at home mom I seemed to slow down. I started to enjoy solitude like I did as the shy quiet child I was before my teens. I was still making a friend here or there but never really had total acceptance from them. I also felt like I said and did the wrong things when we interacted. Once I was at home all the time and wasn't distracted by all kinds of people and noise and running around I rediscovered the recluse I was growing up. I discovered that I liked being alone and threw myself back into being creative. I taught myself how to knit and was always trying new crafting materials and started scrapbooking. I got back into taking photos like I did when my dad got me interested in photography in my teens.

Now, I hate to leave my house. I prefer to only interact with my friend Jenn and my family. They are the only people I can be myself with and I don't feel the need to analyze everything I said and did after every social interaction with them. I like quiet unless I'm listening to music in the car or watching a tv show or movie. I'm becoming more sensitive to noises that I don't like. Especially high pitched or repetitive noises. I freak out over mess, disorder, germs and clutter. I like being at home where I can control my environment. I love working on my various projects, obsessions really. I know none of this is "normal". And I finally don't care. This is me. This is what I like and how I prefer to live my life.

Back to why I need a mental vacation. So as you can see, I have a low threshold for foolishness and mayhem. I like things quiet, clean, organized, logical and predictable.

We have had too many appointments in the past 2 months between Olivia and Stephen and the various check-ups and specialists they both have needed to see. After my accident last November I hate driving or riding in our car. Anywhere. Just leaving the house, riding in the car and going some place where there are people to deal with stresses me out and drains me mentally. Going with my hubby definitely makes it easier : ) God bless him. He understands and tells me to schedule appointments on Fridays so he can drive and go with me. Plus, it keeps in in the loop of what is going on with the kids and all their stuff.

I like getting new cool tech stuff but hate having to set them up and learn how to use them and get stressed until they become a routine part of my life. In one month we bought a 4 handset phone (sick of missing and dropped calls on our cells at home), a new computer for Stephen, a router to set up a wireless network for the 3 computers in the house and the Wii. We bought one router that sucked and had to bring it back after spending hours trying to get it to work and even called the manufacturer which was a waste of time. Pat took it back and got a different brand that is great and working just fine : ) The printer that came with Stephen's computer was a piece of crap that wouldn't work and Pat took it back and was told he had to exchange it for another one and couldn't get a refund because it was part of the "package". It still sits unopened in its box in the basement with the $33 cable that had to be purchased separately, of course. Stephen's computer was easy to set up but it has Vista and needed to have some things set up on it. Works great but it was something new, so stressful for me. We had to move his very heavy bed and his book case which meant moving all his books so he could sit on his bed and watch movies on his computer. Of course, we just move his glider rocker! It was still worth moving everything because his room looks better that way. The phones were easy to set up. However, I still have yet to complete putting all the numbers in the directory....

There were lots of back to school freebies at various stores so lots of running around and leaving my house and dealing with strangers and their lovely noise and smells and attitudes. Love the freebies but hate what it takes to get them.

My garden did pretty well but the tomatoes fell victim to blight. My flowers are finally looking gorgeous now that is hasn't been raining cats and dogs for a week straight. Speaking of rain, our basement flooded a handful of times and that was a pain in the tush mopping up an inch of rain each time. Sometimes it would flood at midnight when I would much rather be sleeping.

I loved having Olivia home over the summer but she is overstimulating. She is a great kid but is very social and loves talking and interacting and jumps around and runs around and makes messes. My son wasn't home during the day most of the summer but had a terrible time once again in summer school. Just knowing he was miserable all day and dealing with some of the behavior that he would bring home was stressful. I wasn't able to go to the gym ALL SUMMER! I had no routine, no order all summer. Wonder why I am in need of a break.

I have had a million medication orders and consents to fill out for school for both kids. Insurance and fuel assistance renewal forms. School info forms for emergencies and allergies and on and on.

We are still getting this place organized and getting settled in. We just painted Olivia's room this past weekend. I will be posting those picks on my other blog if you're interested.

Now I am trying to transition every one's wardrobes from summer to fall and figure out what is too small and needs the next size up. More shopping, which means more running around (unless I get lucky and find it online) and all that driving and people etc. etc. And of course I sell anything worth money on ebay to pay for all the new stuff they need. That requires sorting and organizing and washing and photos and listing and shipping.....

I went and bought a monthly/weekly planner a couple weeks ago to try and help me get some kind of order and routine back in my life. If it isn't written down I will forget it.

Sorry to vent but this is why I haven't blogged much. I'm worn out and overwhelmed. I hate to complain and try really hard to be positive because if I don't laugh I will cry.

So far there are NO appointments for October. Yay!!

If you don't see a blog post for days or weeks it's because I am trying to be the ringmaster of my own little circus and I'm too busy or tired to bother telling anybody about it. Or when I get a break I'm on facebook tending my virtual farms. I know I'm such a nerd but I'm ok with that : )

Olivia's Neurology appointment

2009-09-04T15:25:00.002-04:00

We went to Olivia's first Neurology appointment for her Segmental Neurofibromatosis this morning. She agreed with the geneticists diagnosis but agreed with me that the missing pigment could be unrelated and referred us to a dermatologist. She also was concerned as well about the lump on her back and wants her to have 2 MRIs. More appointments hopefully=more answers.

08/14 10th wedding anniversary and 100th post!!!!

2009-08-14T08:20:00.009-04:00

We are celebrating our 10th year of marriage today. I feel so truly blessed and proud that we are still together. We were married in my mom's back yard. I let my mom arrange EVERYTHING (thanks Mom!!). We had a potluck and ate with paper plates and plastic silver ware. My cake was made by one of my mom's friends and my bouquet was made by her neighbor. My mom's uncle who was a minister (God rest his soul) married us. I wore a used $100 wedding dress (I was frugal even back then). I still have my original 1/4 carat princess cut engagement ring and $75 wedding band (I wear them on a chain around my neck because I had them sized up when I was 40 lbs. heavier and they fall off my finger now). It rained the morning of our wedding which is said to be good luck. Is it luck that we are still together after all we have been through in 10 short years?
No cake smooshing. That wouldn't be nice.

Look at the expression on Stephen's face. It like he is thinking,"Mom, Dad, you have no idea what you are getting yourselves into!"

We didn't jet off to some exotic location after the wedding reception. We went back to our day to day life of work and raising our son. Our son was diagnosed with Autism shortly after our wedding. He now has an additional diagnosis of Epilepsy. We've been through so much with our daughter as well. After birth she spent 10 days in the NICU with Pneumonia and was diagnosed with GERD. She has since been diagnosed with Asthma, Segmental Neurofibromatosis and ADHD. All this on top of everyday challenges, job changes, trying to make ends meet, normal getting to know you arguments that every couple has, horrible apartments run by horrible land lords and moving MANY times, car accidents, quitting smoking, our own health issues and health scares.....

They say you don't see the strength of a tree until there is snow on its branches.

I'm not a bible reader but this framed quote was given to us as a wedding gift and it still sits on the night stand on my side of the bed-

Love is patient.
Love is kind.
It does not envy,
it does not boast,
it is not proud.
It is not rude,
it is not self-seeking,
it is not easily angered,
it keeps no record of wrongs.
Love does not delight in evil
but rejoices with the truth.
It always protects,
always trusts,
always hopes,
always perseveres.

Love never fails.

-1 Corinthians 13:4-7

I really believe that all you need for a happy marriage is love. We just really love each other and our children.

Would I do it all over again if I could go back in time knowing all the challenges we would face? Yes, in a heart beat.

Facebook, bargain shopping, gardening, appointments, ADHD...

2009-08-07T09:05:00.007-04:00

I haven't blogged in a while for a number of reasons.

1-Discovered facebook! Anyone who is on facebook doesn't need any explanation of where my time has gone. If you aren't on facebook, well, go there now and find out how easy it is to spend hours on there.

2-Appointments for the kids! This month alone has 3. 2 were an hour away round trip. By the way, it is official and in writing that my daughter has ADHD. Now I have the fun task of getting her evaluated by her school. They will not make it easy. Nothing is easy in this school district when you are trying to make them provide the services your child needs and they are required by law to provide. Fun times : (

3-Fighting tomato blight and general gardening. All this bloody rain almost killed my tomato plants and they are all still green! I had to pull two off because of catfacing and one because it was rotting from the inside out. I have stripped probably half the branches off of all of the plants in an attempt to save them from the blight that tried to kill them.

4-Sales, sales, sales! I actually bought myself some new clothing last week! I am a cheapo and usually buy used clothing but found stuff I really liked brand new that fit and was on sale so I stocked up. Love the clothes, hate trying on stuff and all the running around it requires. Wonder why I wear the same shirt in 10 different colors with plain old jeans? It's efficient. I am no fashion plate. Also, there have been incredible sales at the pharmacies and grocery stores. All very time consuming.

5-Our basement has flooded twice in the past week because of all the rain.

6-We bought a Wii sport and it is incredibly fun! Also bought the Star Wars Lego complete and even bought the light sabors for the controllers. And recently bought the Sports Resort with motionplus. Very fun!!

And of course all the other day to day stuff I take care of has been happening. Still feeling very tired and like I just want to lay on the couch and watch t.v. But I have errands to run, slugs to hunt, a house to clean, laundry to wash, dry and fold; forms to fill out.........

Mommy's alone time=sleep deprivation

2009-08-03T06:56:00.003-04:00

I haven't felt this sleep deprived since my kids were babies. I feel like my eyes are filled with sand (thanks Sandman) and my limbs are full of lead. I love having time with Olivia during the summer while Stephen is in school. However, I require a larger than normal amount of "alone time", maybe that's just me or I have undiagnosed Asperger's, who knows. I just need to be alone, a lot. Well, with Olivia home all day and Stephen on one of his go to bed late cycles (got to get me some Melatonin) I have been staying up until 1 a.m and getting up at 6 a.m. That may be an easy feat for a twenty-something college girl but I am a going on 4o busy mommy.

I'd love to take a nap but I don't do naps unless my body literally makes me pass out. I have too much to do EVERYDAY and naps aren't an option. I usually only take a cat nap on the recliner couch at night or on the weekend when Pat is here and I know that if I fall asleep I won't wake up to find a disaster or someone bleeding from acrobatics or an accident.

My daughter also can't understand why I won't play with her all day. She has no clue how hard I work as a homemaker. She sees me do everything I do but her little 7 year-old brain doesn't grasp that without me doing all the things I am responsible for that we would have nothing to eat, nothing clean to wear, no money, be sicker than we already are and live in a dump.

Are any of you stay at home moms in the same state of sleep deprivation? How do you get your alone time when the kids are home during the summer?

Happy birthday to me!

2009-07-30T00:00:00.000-04:00

Check me out on NATURALLYYANTAN

2009-07-28T19:56:00.003-04:00

Check me out and all the other natural beauties on NATURALLYYANTAN

http://naturallyyantan.blogspot.com/2009/07/natural-beauty-7.html

Neurology, tummy troubles, sick hubby and shopping...

2009-07-24T23:47:00.010-04:00

Stephen had a Neurology check up this morning. Pat woke up really sick. I can't drive in the city. I love my hubby and hated making him drive us but I just can't do it. I got rear ended really bad in November on my way home from taking Stephen to the dentist. I am terrified to drive in that city. I still have back pain every day. Of course today my back was screaming before my feet hit the floor. I also had tummy troubles that were very similar to when I ruptured an ovarian cyst a few months back. I won't go into details but let me just say that it included lots of trips to the bathroom at first, followed by waves of pain that make you feel like you need the bathroom but don't for a few hours. If there wasn't always a year long wait list for this appointment I would have canceled.

So we made it to the appointment in one piece. Pat and Olivia waited in car. Everything went well and I even managed to get my daughter her Neurology appointment that she has been wait listed for for almost 6 months. I wouldn't have even mentioned it to the receptionist if it wasn't for the fact that the Neurologist will be the one to order the MRI of her head and the lump on her back. The lump on her back concerns me. Not only did I get an appointment in August but it will be with Stephen's doctor : )

We hit BJ's on the way home. Stephen did really well. No headphones. He found a nursery rhyme book and Pat found a 2nd one for him. Stephen also picked out two kids educational computer software cds. Olivia picked out a 3 pack of Hannah Montana chapter books. It amazes me how well she reads!

We got back to town and my Hefty coupons had come in so after lunch Olivia and I went bargain hunting. Stephen was still in his room enjoying his new stuff. Pat, Olivia and I rented The Pink Panther 2 On Demand. Very funny : ) Pat almost made it to the end before he fell asleep. He has seen only 50% or 75% of most movies we have watched in the past couple of years. He works so hard and gets so little sleep and our recliner couch is way too comfy.

I got Olivia upstairs to get ready for bed and went downstairs to put clothes in the dryer. He let Olivia put his p.j.'s on. I didn't ask her to do it, she just wanted to. Such a sweet kid. I went on the computer and thought I heard Olivia talking. I went upstairs and she was reading Stephen's new books to him : ) He has wanted us to read to him for the past two nights. He made me read at least half of a 176 page Mother Goose book to him last night. We are working on using a bookmark to show him that we will come back to that page and finish reading the book or read more the next day. Pat read the other half of that book to him this morning even though he was sick as a dog.

He has been wanting to point out, have us point out or make us point out the words as we read them. He also wants to see what we are writing whenever we are writing something. I think he is slowly seeing that the written word or words on a page are a form of communication that he needs to master through his own reading and writing ability.

The day started out really yucky but got better as the day went on. My kids behaved well and were nice to each other. More days like this please, if anyone is taking orders. Minus the yucky beginning of course : )

The bees have arrived!!!

2009-07-22T18:55:00.018-04:00

Before today I had only seen 2 bees in our yard since we moved here. When Olivia and I were out in the yard earlier, she noticed about 4 bees in the grass. I finally got some new bee photos!!

Hey geeks, what's your AQ?

2009-07-20T22:29:00.005-04:00

How geeky are you? This is just for fun and not to diagnose you officially with anything.

http://www.piepalace.ca/blog/asperger-test-aq-test

I found the link above on the blog The Puzzle Room http://thepuzzleroom.blogspot.com

I scored a 44. Big surprise. What's your score?

My first blog interview!

2009-07-20T09:54:00.002-04:00

Check out my interview on Black girl with long hair
http://blackgirllonghair.blogspot.com/2009/07/sunday-retrospective-i-follow-bglh.html

Grillin' and chillin'

2009-07-19T23:01:00.011-04:00

After our basement flooded with 3 inches of water Friday night (After midnight, had to wake up hubby for help, not fun), we needed to chill and grill. We survived our last attempt at grilling so we figured we would give it another shot. I admit I am getting addicted to grilling. This grill we built also brings back all those hillbilly memories of my daddy grilling on a very similar grill made out of bricks and on a hill (oh lord, hillbilly,LOL!!!). I have to laugh at the thought that people drop hundreds of dollars on a propane grill and ours was $12 (grill price) and the food cooks great and tastes yummy : )

I made a whole meal on the grill! Chicken shish kabobs, BBQ for me and Pat and plain for the kiddos with a foil packet of zucchini, summer squash and organic (didn't have any other kind of vidalia) vidalia onions in margarine, salt and ground pepper. I admit I am still concerned about the food being cooked enough and overcooked this meal a bit but it was still tasty.

Gettin' addicted to s'mores. I just have to have them after every grilled meal!

Hope you all had a great weekend!

Are any of you grillin' addicts? Got any good advice for us? Any funny grillin' stories?

Summer school update...When is compliance not good?

2009-07-17T21:36:00.003-04:00

I got some info from his bus driver this morning about someone who brought him out to the bus yesterday afternoon. She said that the woman was older and very impatient with Stephen. She made him drag his bag of precious (and expensive!!) Mother Goose and Nursery Rhyme books to the bus. I was seeing red. I immediately called his summer school teacher and discussed my displeasure with this info and how upset I was about him biting and it being a cry for help.

To her credit, his teacher sounds nice and sincere. I believe what she says to me. I have been around the block a gazillion times and usually know BS when I hear it. She listened to me and even said she would make sure that she was the one to get him on and off the bus. She also said she would keep closer tabs on him. And, she said she would give me a call after he left school to touch base. She not only wrote a very detailed note in his home/school log but also called me like she said she would. I am a woman of my word and that scores big points with me when someone does what they say they will do.

He had a great day today : ) He wasn't allowed to watch Charlotte's Web tonight, which is his usual routine. He got a little upset but when he saw Daddy wasn't going to back down he went upstairs and got on his computer and looked at his books. Olivia seemed to be less afraid and even got him one of the many Popsicles he had tonight. He acted like our lovable Stephen.

Love really is unconditional. We all need at least one person in this world who sees the good in us under all our bad behavior, mistakes and shortcomings. I am that person for my son.

I have been through a lot of rough stuff in my life and I truly believe if it were not for God's forgiveness and unconditional love that I would not be here today. I think God is constantly guiding us through life and we are always exactly where we need to be. Stephen is on a rough path through life but he makes positive steps everyday. God and I see who he can be if he is given the unconditional love he needs to grow.

I know other people think that children should never get upset and protest against what adults want them to do. However, I truly believe that 100% compliance in a child sets them up to be victims. Especially children who are non-verbal or mostly non-verbal and have cognitive deficits. I'm glad my son gets upset when he doesn't like something. That is a normal reaction. We all need to have self-preservation skills. I don't want him to do EVERYTHING EVERY ADULT tells him to do. We have told our daughter a million times to listen to her gut and if something happens that she doesn't like that she tells us. She actually is going through a phase right now where she says,"I don't like that" when something happens or is happening that she doesn't like. I don't want my children to be victims. I want them to be fighters and survivors.

Do you worry that your child is being molded at school to be too compliant (hate that phrase, very ABA)? Do you see your children's behavior issues as a form of communication? How do you encourage your child to stand up for themselves and protect themselves?

Summer school and the biting begins

2009-07-17T07:09:00.004-04:00

Stephen bit Olivia really hard last night while I was getting them ready for bed. He was already worked up before we went upstairs when his movie ended. We just got "Charlotte's Web" on DVD in the mail while he was at school. I got it off ebay. He came home in a good mood. Didn't get upset when the computer kicked him off the internet (I have it on a timer). He has seen that movie hundreds of times. My husband didn't shut it off until the credits were over. For some reason he was so upset.

She was in front of him and he just locked onto her shoulder like a pit bull and wouldn't let go. She didn't have a shirt on. He just started biting on the 13th at summer school. Twice now he has bit himself and/or staff. He has not bit one of us in YEARS. While I was cleaning her bite, she was screaming and Stephen bit his hand while he was in his room. At school during the school year, noise is a big problem for him. But he rarely lashes out because of it anymore. At home the noise doesn't bother him, even when Olivia has friends over and they are super noisy.

Why did he bite her?! After he calmed down and had some quiet time in his room he was happy and affectionate again. If he is upset with summer school, wouldn't he be upset from the time he gets home? Wouldn't he being crying every morning when it's time to get on the bus? Why don't I know what to think after all these years of dealing with this?!!!

We have learned that Stephen's behavior is a way for him to communicate. It seems he is trying to tell us something. The only major change in his life right now is summer school. I wish he could just tell me what is wrong. He had his initial evaluation for a communication device in MAY. Still no report and no rentals to try. How bad do things need to get before they help him communicate?! PECS are their first choice because it's CHEAP. Stephen doesn't use them other than for his schedule at school. They and we have tried to get him to use them for communication and he doesn't want to use them. He uses the computer and has started doing searches by himself on the computer. He is smart enough to use a communication device. The school district just doesn't want to fork over the money!!!

Are any of your kids in summer school for special needs? Does their behavior get worse, better or stay the same in summer school? Is your kid verbal, non-verbal. If non-verbal, do they have behavior problems associated with not being able to communicate? Do they bite themselves or others?

I really need some support, here. My husband wanted to keep him home today. We discussed not sending him to summer school for the rest of the summer. If it is summer school that is the problem than I am all for keeping him home. What if it's not. I just want everything to be logical. But people aren't logical : (

Now Olivia is traumatized : ( She said she wishes she had a normal brother. I explained that compared to normal brothers hers is pretty good one. I know it doesn't seem that way after being bit, but I have seen MANY Nanny 911 episodes where all the "normal" siblings are spitting in each others faces, hitting, kicking, biting and throwing things at each other all the time. Oh yeah, and swearing! 99% of the time Stephen is a very well behaved kid. Unless something is really wrong.

Ugh. Wish he could just tell me what to do. : (

Don't let mommy find the clippers!

2009-07-16T17:34:00.017-04:00

***WARNING***

IF YOU ARE MY MOTHER OR FATHER, PLEASE TAKE YOUR BLOOD PRESSURE MEDICINE. REMEMBER MOM, IT'S ONLY HAIR!

This is a picture of me the summer I worked the 2nd Woodstock. I was in my early twenties. This girls style hasn't gone anywhere. It's just been buried deep down under loads of laundry, dirty dishes, dirty diapers, doctors appointments....... and all the joys that come with being a stay at home mom.

If you looked at my previous post than you are probably wondering what the heck I did to my hair.

What I did first-

This is how I wore it yesterday.

I just had to go shorter because you can't get clean lines with a ginormous guard on your clippers.

I call this look punk rock cheerleader ; )

Hey, it's cheaper than buying a sports car!

Oh my, what happened here?

2009-07-14T21:47:00.006-04:00

Home=Vacay any day!

2009-07-12T21:35:00.017-04:00

We have been working our butts off since we moved to our new home in February to make it a place of rest and recreation. We have kids with various medical and mental challenges so making our home a place that we love to be is better than any vacation we could ever think of taking. No vacation spot could ever accommodate all our and our children's needs so it wouldn't be very enjoyable to "get away" for rest and relaxation. A huge plus of making our home our own custom made vacation spot is that it is way cheaper and every day has the opportunity to be a little vacation from our problems (Love the movie "What about Bob?").

It's also been raining forever this summer so we finally had a few good days in a row this weeken to enjoy all our hard work!

If Pat looks tired it's because he is. He has been working hard at work and coming home and working hard on making our apartment a home. Stephen started summer school this week and it is going much better than last year. Yay!

Here is our second attempt at grilling Friday night. Pat did a great job with the kielbasa. Yummy : ) Stephen is not liking being outside while we grill. All of his favorite things are inside the house-his book collection, his computer, the Internet, his music collection and his favorite movies. I tried grilling chicken legs last night and they got fried. I wasn't convinced they were safe to eat so we removed the meat from the bone and nuked it in the microwave. We are all still alive....but if you never see another blog post..Another safe thing to grill-marshmallows. Stephen doesn't like marshmallows : (
This amazing grass was grown from pure grass seed. This was dirt two weeks ago!

Olivia and Pat enjoyed the "hammock" feature on the porch swing. Pat tried to get Stephen to try it out but he wanted to go back inside to his favorite vacation spot-our house! I laid down on it too and almost threw up with how hard Pat was swinging it. He slowed it down and the world stopped spinning and we watched the birds and clouds go by.

It's amazing how good you can look with the right camera angle. Thanks to the hubby for making me look good!!

Our landlord had someone repour the stairs. Here is what they looked like before. After
The guy who did the stairs let Olivia put her foot in the cement at the top of the stairs. She felt like a superstar!

Do any of you have children with Autism or other special needs that just don't like the outdoors very much? Have you done more than most other families with children to make your home your own little vacation spot?

Fourth of July

2009-07-07T06:55:00.009-04:00

We enjoyed the new grass sprouting up from the grass seed we sowed earlier in the week. Pat and Olivia built our cheapo grill. Bricks were free (recycled) and the grill was $12 at Walmart. We are grilling virgins and didn't want to give our family food poisoning so we cooked hot dogs and s'mores. We have been very busy every nice day with building the new shed, landscaping and gardening and this was the first day we really just sat back and enjoyed all our hard work. I will be taking garden and landscaping update photos today (weather permitting) and post them on my other blog http://stressedbymess.blogspot.com/ Hope you all had a great holiday weekend!

I can see, I can really see!

2009-07-02T22:31:00.004-04:00

I got the new lenses put in my glasses today and OH MY GOD!! My old lenses were crap! I forgot that these lenses are actually a new prescription that is just slightly better than the old ones (my prescription hadn't changed enough in 2007 for my insurance to cover the cost which is why I am finally getting lenses in 2009). Worth every penny! Love the transitions lenses. Yay for me being able to see!! Hey look at me writing rhyming poetry. I did it again, just then. O.k. I'll stop ; )

It really is HER pet

2009-07-01T09:46:00.007-04:00

As all you moms out there know, when a hubby or child gets a new pet the responsibity of taking care of it usually ends up becoming yours. Yesterday, Olivia went to play with The Funkster and it and it's (no idea if it's a boy or girl) cage were wet. Was it water from his waterbottle or pee? Olivia didn't care what the source of the wetness was and decided the hamster's entire cage needed to be cleaned. Yes, she got her hands dirty and did what needed to be done to ensure the health and safety of her pet. Seeing her taking such good care of The Funkster made me very proud.
Yes, that is a little poop on The Funkster's side. She was not fazed.

She decided that just wiping the wetness off his wheel wasn't good enough and cleaned it with soap and water.

So fresh and clean. Yes, that is a bag of trash from cleaning out The Funkster's cage and she even brought it outside to the trash.

Nature's fireworks

2009-07-01T09:38:00.005-04:00

No, these are not daylight pictures. These are photos of the very powerful thunderstorm we had last night. In the first photo, you can barely make out the top of Stephen's head and the top of the back of his glider rocker in front of his window. The power was out for about 2 hours. Luckily, we all love a good light show, curtesy of Mother Nature. Stephen loved watching the lightening.

I just might go broke buying blueberries!

2009-06-30T10:07:00.002-04:00

Stephen is eating about 2 pints a day or until they run out if we have more than 2 pints in the fridge. At least they are healthy!! We are going to investigate how much it costs to buy a blueberry bush. God help us when he becomes a teenager and eats like a horse. Hope I get REALLY good with my coupons and bargain hunting!

Sick but really busy...

2009-06-30T07:23:00.004-04:00

I have been sick since last Friday but as usual that has not slowed me down. I had a sore throat for 3 days and have been really stuffy. I have Vasomotor Rhinitis and am always stuffy but it is 100 times worse when I am sick. I have to take expectorants to get anything out and they aren't working this time around. I'm supposed to take them everyday but I don't. I'm also supposed to use saline nasal spray but I don't. I also have cryptic tonsils (big holes in my tonsils that collect food, very gross and painful) so half the time I have an earache (my right side is the worst), stuffy nose and sore throat from that. And I don't always know if I have a virus or it is the tonsils. I know, I need to get my tonsils out! I am a big baby and hate hospitals and doctors. I could go on with the rest of my ailments but I could fill several pages with that info....back to my current, temporary illness.

I did more landscaping, refinished an end table and built a shed with Pat and our landlord. I will be posting photos on my other blog of all this work.

And of course I have not had a moment to myself since Olivia got out of school so last night I was up until midnight figuring since Stephen is out of school until summer school starts that I could sleep in. No. Pat had to go into work early and I was awakened at 5:30 a.m. by my pee soaked daughter (those Potty Patty "waterproof" pull-ups can't absorb the gallon of pee my daughter emits every night) and stumbled around changing her bedding. Of course my brain does not shut off easily once it is turned on and I was not able to fall back asleep. It is 7:40 a.m. and they are both still asleep. Any other day that I can't drag myself out of bed they are up at the crack of dawn. Murphy's Law in action.

From everyone else's blogs I've been following for the past 2 months it seems that the germs are not taking a holiday. Sick moms and sick kids are in ample supply. I don't know about any of you but this year has been full of illness and crappy weather! I hope that heading into July we can all enjoy some good health and nice weather!

Keep your foot out of the toilet because you could break it!

2009-06-28T07:58:00.003-04:00

We were getting the kids ready for bed Friday night and Pat and I were in Stephen's room when we heard Olivia crying. We ran into the bathroom and she was crying hysterically and standing with one foot up like a pink flamingo. Her left foot and pant leg cuff was soaking wet. We asked her what happened and she said her foot went in the toilet when she was spinning around on the step stool in front of the toilet. Of course the lid was open.

I was laughing so hard I was crying. I wasn't laughing at my daughter's pain. I just could not get over how the heck she got her foot in the toilet! My husband was trying really hard not to laugh. Once I got her pants off and got a good look at her foot and she kept crying, I wasn't laughing. She had swelling and the area was turning purple. She can be quite dramatic and we don't always know how much she is exaggerating things. So to see if she was really hurt I had her take a shower and see if once she was focused on something else she would start feeling better. Well, she cried in the shower. She got out and got into jammies and we put ice on her foot for ten minutes.

Pat and I just couldn't shake the feeling that it might be broken. So I decided to take her to the ER. Let me premise this little journey to the ER with two facts, I am sick and have a back injury from a car accident in November 2008. I had to carry her everywhere and even had to hold her over the toilet when she went pee at the hospital.

We waited two and a half hours to get a 5 minute examination in the hallway from a doctor that poked her foot and said he would get x-rays and I told him she already had one! We waited another half an hour for him to come back and tell us it wasn't broken and that they would put an ice pack on it and give her some Motrin. We got the ice pack after about 15 minutes and then finally got the Motrin three and a half hours after we had first stepped foot in the hospital. Pun intended ; ) My back was screaming with pain from carrying her around and sitting in those horrible chairs.

Of course, as any parent knows, if I hadn't taken her to the ER her foot would have been broken. She woke up Saturday morning and ran around all day like nothing happened. So tell your kids to keep their feet out of the toilet or just make sure the lids are always down!

By the way, I just looked at the form they gave me at the hospital and it says she hurt her right foot. Gee, thank God she didn't need surgery or they would have operated on the wrong foot. Wonder why I hate doctors and hospitals!!!

Goodbye Mr. Turtle, hello The Funkster

2009-06-26T15:40:00.004-04:00

Pat and Olivia took Mr. Turtle to the river and released him. Then they went to Petco for fish and brought home a dwarf hamster. How can I say no to something so cute and fuzzy.

Meet The Funkster : )

No more stinkin' crowns to be pulled!!

2009-06-26T15:27:00.002-04:00

The kids had their dental appointments today. Stephen would not sit through a cleaning, again. Gee, maybe it's because the last 4 times he has been there he has had to have a baby tooth pulled because of the crown. I also think it is because the dental assistant was not warm and fuzzy. She is the first person there that I have not liked. She kept trying to tell me that they were going to have to hold him down and that they would papoose him to pull his tooth. Yes, I said I was there to help hold him down and reassure him. I told her it would not be necessary to papoose him because the numbing stuff on the Q-tip and the Novocaine shot were the hardest parts for him and that pulling the tooth would be a piece of cake. I told her this is the 4th time I have helped with an extraction. Her attitude was so impatient and not friendly that I was glad I was with Stephen to advocate for him. He survived the pull and actually skipped, SKIPPED, through the parking lot after on our way to the car! That was the last crowned tooth he has and he won't be losing anymore teeth!! Yipee!!

Olivia had another cavity (darn GERD). She has the worst teeth. She has been on medication for her GERD since birth and used to foam at the mouth while sleeping, was still spitting up in kindergarten even though she was on medication! Does anyone else's child have this problem?

So Olivia has to go back for her filling : (

How is dental care for your kids?

Here comes the sun!

2009-06-25T20:32:00.015-04:00

When the sun shines (FINALLY!!) everyone is happy! We even had rainbows!

Even my seeds decided to sprout and catch some rays!
Bandit was scheming on how to enjoy the weather on the other side of the screen....

Hope you all were able to enjoy the nice weather. It is going to rain for another week here : (

Stop and smell the roses

2009-06-24T09:14:00.006-04:00

Having Olivia home all day is going really well. Her behavior has been much better since she has been having 1/2 a can of Coke 2 times a day. Yes, I am letting my daughter drink some soda to help her with her ADHD. No, I am not crazy. It seems to be working for her so Yay, me! We made Sculpey magnets yesterday (we need to glue the magnets on the back today). Olivia made the one on the bottom. I just wrote my name in cursive on a piece of paper and she was able to sculpt it.

We also played almost one full game of croquet. I was enjoying it and she quit when she saw I was winning : (

She has made me slow down and do more recreational things instead of running myself into the ground with chores, errands and phone calls. She is also very bright and articulate so I get to have conversations with her which are always interesting and revealing : )

How are you all doing with your chicklets home for the summer?

Communication, yes, please!

2009-06-24T06:59:00.003-04:00

Last night after dinner Stephen walked into the sensory room saying, "Toys". He wanted to play with the 2 new toys I bought for the kids yesterday. He has never said toys spontaneously and it isn't a word we have worked on with him. He said it again this morning after his bread and jelly because he wanted to play with one of them! He also is saying, "blueberries" and "mac and cheese". Yes, he ate blueberries and leftover mac and cheese this morning after his bread and jelly. Breakfast of champions!

Fun new cheap sensory toys

2009-06-23T16:31:00.015-04:00

I needed fillers to use my register rewards at Walgreens today so I bought two sensory toys for the kids. They love them! Stephen has been home for an hour and a half and he is still playing with one of them. One was $1.99 and the other was $2.99. They light up so that's why some of the pictures are blurry. I had to turn the flash off to capture them lighting up. The tenticles can be pulled off and Stephen has put them in his mouth so adult supervision is definately required. They have already broken the light inside one of them and I'm sure they will be totally trashed by the end of the week.

I don't care if I go broke buying blueberries!

2009-06-23T16:27:00.002-04:00

Stephen is eating blueberries! He has not eaten them since last year and would only eat them at school. Olivia had me buy some today (they are so expensive that I never buy them). If he will only eat one fruit he picked one of the most nutritious!! Yay!!

I still can't beleive he eats them because they are so squishy.

New lenses are on their way!

2009-06-23T14:32:00.002-04:00

I went to my optometrist and in my naturally loud voice told the salesperson that these are the worst glasses I have ever had and that I am afraid to get another set of lenses from them because they might do the same thing. She said she would order a different type of lens and that I shouldn't have a problem. She said she would give me half off on my prescription. Half off on my Rx is a lot!! So that would be $82 with half off. Then I told her I wanted transition lenses (I am blinded by the sun even on overcast days so they are now a necessity) which is another $98 (discount of $33). So new transition lenses for $180. This pair of glasses originally cost me over $300 (without the transition lenses) WITH my insurance discount so this seems like a bargain! And they should be in in a week to a week in a half. I can't wait to see clearly and not be squinting my watering eyes out in the sun!

Stephen is better just really tired

2009-06-22T19:30:00.003-04:00

He was up at 1:30 am again this morning. He woke up with no fever and acted like his old self all day. What the heck was with the fever and laying around yesterday? NO clue. I'm just glad whatever it was didn't last! I hate seeing him sick because he won't take anything or drink soup or all the usual things you do for your kid to make them feel better.

He was just crying and looking really tired about a half an hour ago so I stroked his eyebrow and his head. My mom used to do that to my eyebrow and it always put me to sleep. He went from crying to being lovey and looking really sleepy. He is asleep now and hopefully will sleep all night. He really needs a good night sleep.

Recall on Nestle Toll House cookie dough!!

2009-06-21T18:09:00.002-04:00

We found out yesterday and returned ours for a refund.

My glasses suck

2009-06-21T14:08:00.003-04:00

I went to clean my glasses last night and the coating is coming off worse than ever. I can barely see. These are glasses that I bought from my optometrist and they are also the most expensive pair I have ever had. I have usually been able to wear a pair until the frames fall apart or I need a new prescription. When I went for my last exam my prescription hadn't changed enough for my insurance to pay for new lenses. This is the first time I will have to replace them because of the lenses crapping out not because I really need a new prescription. I will be going there to complain and try to get them to just replace the lenses at a discount. Or I will take my business elsewhere. Ugh.

Another swollen bug bite for Olivia and her Segmental NF-1

2009-06-21T11:34:00.003-04:00

Olivia has an area on her forearm the size of a silver dollar that is pink, hot, swollen and hard. She woke up with it this morning and said it itches. I gave her Benadryl when she woke up because she had peed and told me about her arm. She said it didn't help. I am noticing a pattern. Her last really bad bug bite was on her left eyelid and this whatever it is is on her left arm. She has her Segmental Neurofibromatosis on her left side. I have also noticed that she is starting to lose pigment on her right arm. I think that when we take her to her genetics follow-up appointment I want them to give us a referral to a specialist is Neurofibromatosis.

Stephen is sick : (

2009-06-21T10:53:00.002-04:00

Stephen has been awake since 1:30 am. He hasn't been sleeping well for about a week. I noticed that the last bloody crown he has is half out and the new tooth underneath it is half out. Of course the last one couldn't come out on its own! The kids have a scheduled dentist appointment for this coming Friday so I am waiting to have it pulled. I keep telling him to pull it out but it isn't even loose : ( He also has another molar coming in.

And now he is sick with a fever. Poor little guy. His temp was 101.4 armpit (so it's actually 102.4). I hope he takes a nap because he won't take the oral medicine and he has to be really sick to give him the suppositories otherwise he won't let me put them in. The only relief he gets when he is sick but not sick enough for suppositories is when he sleeps.

Turtle, Mr. Turtle

2009-06-21T06:41:00.006-04:00

Olivia found a tiny snapping turtle on our lawn last night. That is one lucky turtle. Pat just mowed the lawn Friday night and raked it yesterday morning. How the heck did he survive that and how the heck did he make it to our yard. We live on a hill on a busy main street and the river is across the street from our house.

Of course Pat and Olivia want to keep him. I said o.k. but it is THEIR pet. I already have enough things to feed, clean and take care of. I think he will be going back into the wild when the summer is over. These things get huge and I don't really know if he will survive in captivity.

Here he is, Mr. Turtle.

How ironic

2009-06-20T06:52:00.003-04:00

So, I'm standing in my yard talking to my landlord who stopped by to drop off the lawnmower and Stephen comes out and sits on the porch swing. We were talking about getting a fence with the grant we are supposed to be getting so I don't have to watch Stephen like a hawk when he is outside. I tell him that Stephen is sneaky and will wait until I am talking with someone or not looking and try to leave the yard.

We move to another area of the yard and keep talking. About 5 minutes later I casually look over at the swing and it is empty! I scan the yard quickly with my eyes and run inside to see if Stephen went back inside. I run out to the side walk and yell his name and I look over at my neighbors house and there he is trying to get in the front door. Stephen looks over at me and starts walking towards me. I brought him inside and locked the screen door and kept the front door of the house open that goes to the porch and go out the back door which has a child safety knob on it.

As my heart starts beating again, I go to my duplex neighbor's yard where my husband is mowing the lawn (yes, he is such a nice guy) and tell him I'm waiting for him to tell me "I told you so". Which he doesn't. Yes, he is a really nice guy ; ) Whenever he has been home and I am out in the yard with the kids, he constantly pops out to make sure that Stephen hasn't run off and tells me I am too trusting with Stephen. I guess he was right.

We just need a fence. I know I am not the only one who has a child that is a flight risk and would love to hear some stories.

Coca-Cola for ADHD?

2009-06-18T08:12:00.006-04:00

First let me say that I don't like soda, at all, anymore. I lost 40 pounds about 3 years ago and many of those pounds were put there by soda. Which I really have never liked. The bubbles are too stabby (a word?) and make me hiccup. But I used to be the kind of person that would eat or drink whatever was around me. Since I have lost weight and worked really hard to maintain my weight loss I have had a ban on soda in the house. I am not tempted by it anymore and had a few sips here and there.

I mainly didn't want soda in the house because of my daughter, she is a sugar fiend like her father. I reluctantly started buying my husband Coke recently only because if I buy it it will be really cheap and if he buys it he will be paying too much. He just has to have his soda. I should give him credit because he only drinks one a day. I digress. I certainly don't let my daughter drink it. It has no nutritional value and she doesn't need the caffeine given her hyperness (is that a word?). Or so I thought......

I just read in someone else's post that the caffeine in a Coca Cola has the same stimulant effect as ADHD meds. The post was full of responses to the news that ADHD meds increases the risk of death in children. One respondent was a pharmacist that said to just give your kid a Coke in the morning because it has the same stimulant effect as meds. I am not a fan of medication unless absolutely medically necessary, especially for my kids. That is why I am excited by the theory that using soda could help my daughter. Nobody ever died from drinking a soda!

She is having a half a can this morning and the other half after lunch. I will inform you of any significant results.

I need to go have my coffee. Yes, I self medicate my undiagnosed ADHD with coffee. 1 cup 2-3 times a day. Who knew medicine could be so tasty ; )

Books, lights and music

2009-06-16T07:09:00.006-04:00

Stephen has made some real spontaneous progress in the past week.

He has started to turn off lights when he leaves a room (except his room)!! We prompted him to do this for about a week weeks ago and he has suddenly started doing it on his own.

He was home yesterday with tummy troubles and every time I went into his room and he had his music really loud he would turn it down immediately without me saying anything : )

I started my day feeling pretty crappy. Mondays are my bad days. However, I had tons of laundry to do, as usual, and other chores that had to be done. Once I got my chores done and took a shower I got a burst of motivation. I weeded out Stephen's book collection.

These are in a box in the basement. I showed him what I removed and he didn't seem to care. If he doesn't touch them or take any out after a week I will donate, sell or throw them away depending on their condition.

This is what was left of his collection. I organized them and showed him what I did. He really liked it. I and Pat decided that we will not buy him books unless he has shown us online or in a store that he wants them. This will hopefully keep his bood collection full of books that he really enjoys.

Now there is room to grow!

I also did some organizing in Olivia's room and removed some things she doesn't need anymore.

I am in the mood to gut things again. I am going to try to list a whole bunch of stuff I have been putting aside on ebay and get it out of the house!! Some extra money would be nice too : )

Blah

2009-06-15T09:58:00.002-04:00

Stephen is home with diarrhea. Not bad. He had it once yesterday and once today. But he keeps pressing on his lower abdomen and just not feeling good.

I feel like crap. Runny nose, congested throat, achy. I did not want to get out of bed this morning.

Two more days and Olivia is out of school for the summer and my whole daytime routine is going to be obliterated. I really hope I can balance spending quality time with her and doing my chores, blogging, errands and what not. We shall see. Stephen will be going into summer school a week after his school year ends and will have about 3 weeks at the end of August that he will be home. Thankfully, he will be 15 minutes away again for summer school. I don't trust the summer program as much as his school year program (which is about 40 minutes away) and had to pick him up a couple times last summer for his behavior.

How are you all dealing with your kids summer vacation?

Potty Patty is not leak proof

2009-06-15T06:10:00.004-04:00

Well, Olivia has worn the Potty Patty waterproof 2-in-1 training pants to sleep in for about 4 nights. The first night she stayed dry and didn't get up to go pee in the middle of the night. The next night she peed and it leaked around 5 a.m. Saturday night she slept over her friends house and we had to pick her up at almost 12 a.m. because her friend kept waking her up. So she peed a little in it. Last night she came downstairs after being asleep for maybe a half an hour. She was sleepwalking and we couldn't tell she was wet (she sleepwalks occasionally), even when my husband picked her up to bring her back to bed. She came down 5 minutes later to tell us she had peed in her sleep. The bed was wet.

So I'm still glad I bought these because I have to do laundry EVERY DAY in this house so I can easily throw her sheets and pull-ups in the wash without doing extra loads. I'm also glad that I am no longer contributing to the gazillions of pull-ups in the landfills. And they are making her wake up when she pees which was one of the reasons I bought them. They are also absorbing the majority of the pee. However, if you are looking for a truly waterproof cloth pull-up these are not it!

Cloth pull-ups and bedwetting

2009-06-11T14:25:00.002-04:00

My daughter still wets the bed. She has always slept in a diaper or pull-up. She is almost 7 1/2 and I am sick of the cost and worried she will never become night trained. When Stehen was ready to be potty trained I had to take away his pull-ups and let him pee and poop in his underwear when he was at home. He had become desensitized to feeling wet and poopy. Eventually, he didn't like the feeling and started using the toilet. This took about a year of me soaking, rinsing and then washing poopy and urine soaked underwear and pants but worked and was soooo worth it. I think my daughter is not becoming night trained because she is a heavy sleeper and she is not feeling wet when she pees in her sleep.

SOOO, I went on ebay to find cloth pull-ups that fit her. Luckily, she is slim for her age and I found Potty Patty 2 in 1 waterproof cloth training pants in XL. I ordered 3 pairs. They came yesterday. One pair was a medium which I will be sending back for an XL. I washed and dried them and they are really soft inside and out. My daughter wore them last night and stayed dry all night!!! I am curious to see how well they contain the pee when she does pee in her sleep. Hopefully she is on her way to getting up to go pee in the middle of the night.

Do any of you have any stories about potty training?

Looks like chicken

2009-06-06T11:57:00.005-04:00

Pat caught a Rainbow trout yesterday and I cooked it up today for part of my lunch.

I baked it in foil with the skin on. I took it out of the oven when it was done and removed the skin on one half and then pulled off the meat. I went to sit at the computer to eat it and Stephen came over and kept saying "chicken". I told him it was fish and he repeated it after me. I went over and sat on the couch with him and gave him a bite. He loved it!!! He ate this one other time years ago and couldn't get enough of it.

A leopard can't change its spots

2009-06-06T06:51:00.003-04:00

It's amazing what children tell you when you are driving in the car. This is where my daughter always tells me things she would not normally bring up or discuss. We got talking about her "spots", the gazillion freckles under her left armpit from her Segmental Neurofibromatosis. In the course of our conversation she told me that kids are making fun of them. She said that she doesn't like raising her hand in class because then the kids see them and make comments. I tried to say all the right things about everyone has something that makes them different and that most kids tease other kids because they don't feel good about themselves, etc. But I just kept thinking that she is being really hurt by this and it will probably get worse (the spots keep multiplying and she is missing more pigment on her shoulder and neck every year) because kids are like this up through high school.

She is such a great kid. She is energetic, creative, funny and independent. I really hope she learns to accept this part of herself and not let it damage her self-esteem. I also hope she learns to focus on the friends and family that love her just the way she is. I was teased and rejected as a child for various reasons and it wasn't until I reached my 20's that I finally really liked and accepted myself.

Have any of you had to deal with your child being teased or made fun of and how have you tried to help your child deal with it?

My name is....

2009-06-04T06:06:00.009-04:00

I went to my daughter's Author's Tea at her school yesterday. She did a great job reading the story she wrote. The other kids books were cute. Olivia came and sat on my lap after she read hers. Then everyone was done reading their books and the mingling started. Olivia abandoned me for a table of her friends after about five minutes. I looked at the clock and realized that the kids were getting out soon and the bus convoy would be starting in another 20 minutes and I didn't care to be stuck at the school in traffic. I offered to take Olivia home with me but being the social butterfly that she is (she is the odd man out in this family) decided to take the bus home.

I couldn't wait to get out of there. Am I the only one that always feels like they could be doing something better when they are in these kind of shallow social situations? I know that most parents feel like schmoozing with the teacher will get their kids some kind of special attention in class and they are probably right. I don't believe in kissing people's butts and acting fake to get things. If I like you than I like you for you not for what you can do for me. I think that because I don't have a fancy house, cool stuff or something else to offer people other than my winning personality that is why they generally don't gravitate towards me. Am I off with my perception of most people being users? I feel like most people are always carefully orchestrating what they say and how they act with other people to get what they want out of the relationship or interaction.

Sometimes I wonder if what is considered a lack of social skills is actually a keen perception of people being fake. I get "vibes" about people all the time. But on the flip side I don't always know when someone is trying to take advantage of me. Because I always have a hard time "reading" people I generally approach most people with distrust. Most people annoy or disgust me. Most of the time I look at people's behavior like a kid watches bugs in a jar. Fascinated yet disgusted and somewhat terrified at the thought of actual contact. People confuse, terrify and fascinate me. I really like how some people are on the surface but somehow always feel like they are not who they appear to be. Ugh.

I also have a hard time concealing my true feelings. I have a compulsion and natural need to be honest and "real". I'm always me. What you see is what you get. I don't have 2 faces. It seems to me most people have more than 2 faces. One face for work, one for their spouse, one for their friends, etc. I find most interactions with people upsetting. I always feel like I am dealing with some "version" of someone. There is a reason women say they are putting on their face when they apply makeup. Not a fan of make up. I digress. It would be great if everyone walked around with those "My name is..." tags that said who they really are and what they are really up to.

Are any of you as confused, frustrated yet fascinated with people as I am?

I understand why my son fixates or obsesses on books, music and movies. They are consistent. They are always the same. They don't have ulterior motives. They aren't confusing. I guess that is one of the reasons why I enjoy my many hobbies. Being alone is so much easier and enjoyable for me. Unless someone else shares my interest in something. Than talking with that person is exciting to me and not stressful.

Wow, I feel like I just rambled on. If any of this made sense to anyone or they would like to give me their take on these things, please leave a comment.

Also, they had a table with food that I did not partake in because of everyone touching the food. One teenage girl (sister of student?) stood there eating right out of the bowl!! Yuck!!

Happy Birthday Stephen!!

2009-06-01T13:38:00.024-04:00

It's Stephen's birthday today! He is 11 years old. Almost a teen. So not ready! We had his birthday party yesterday. This is Stephen's birthday "cake". He doesn't eat cake and ice cream but he LOVES candy!

He got a lot of gift cards, mostly to Barnes & Noble. He doesn't realize it yet, but gift cards=books : ) I am hoping that if he uses the gift cards a lot he will be more excited in the future when he receives them as gifts.

THE BIG ONE

This tunnel rocks! It is made for big kids : ) I got it off Toysrus.com

Olivia's bug bitten eyelid update

2009-05-28T08:46:00.009-04:00

Well I kept her home yesterday and when you see how her eyelid looked you will know why.

This is how my poor little bugga's eyelid looked when she woke up yesterday morning. She is just like me when she gets bit by May flies. The poor thing could barely see out of that eye. I tried to get her to put an ice pack on it (per instructions on WebMD) but she didn't like it. So, I gave her some Benadryl and Acetaminophen.

She started to feel better and of course her ADD/ADHD kicked in. She was bored so after much fussing and whining about me not being able to play with her (she thinks I sit around all day while she is at school and not running around the house frantically trying to complete chores, run errands, make phone calls, order stuff online, fill out forms and what not) she wanted to make a stuffy out of felt. So she told me what shape she wanted and I drew it, cut it and she sewed it.

In the above photo you can see her eye was starting to look better.

Here she is this morning looking and feeling better. Still itchy and sore (she got bit on Monday!) so I gave her Benadryl and Acetaminophen. Of course she had to take her kitty to show off at school ; ) I just taught her how to sew this past year and she has become quite good at it.

Am I the only one who feels like they just want to put their sickly, accident prone kid in a bubble? She is always sick and/or injured. I feel so bad for her that she always has something painful or uncomfortable going on with her.

Darn May flies!!!

2009-05-27T06:50:00.002-04:00

My poor little squirrel has inherited my severe reaction to bug bites. She got bit on the eyelid (of all places!!) on Monday and it is really swollen and itchy. I got bit on the earlobe over the weekend and it swelled to cartoon proportions off and on for a couple of days and itched like crazy. This morning her eyelid looks really bad. I gave her a Benadryl and some Acetaminophen to see if that helps. Does anyone know a good home remedy for the itching and swelling of bug bites besides applying ice?

Our staycation

2009-05-26T10:59:00.003-04:00

If you want to know what we did for our staycation this weekend, check out the new post on my other blog http://stressedbymess.blogspot.com

They had a V8!

2009-05-21T07:21:00.004-04:00

Actually, a V8 V-fusion popsicle.

I have been making juice popsicles for my daughter for about six months with o.j. and Juicy Juice. Stephen loves popsicles but won't touch my homemade ones. Until.... I made them with V8 V-fusion juice. Olivia got one out of the freezer and he started pointing and said "Posicle, posicle". He tried it and he loves them! I am so excited by this because he won't eat fruits or veggies (sometimes goes through phases of eating blueberries). The only veggie he eats is the tomato sauce on the pizza I make. He also stopped drinking juice years ago and will only drink water.

This juice is awesome! I love fruits and veggies but don't feel like I eat enough of them. It tastes really good. I also have $1.00 off on one coupons and they are $2.97 at Walmart right now. This juice has veggie and fruit juice. It is 100% juice. I'm hoping I can puree some fresh fruit with it and make pops to get some more fruit in him without him knowing it!

Things can only get better

2009-05-21T06:42:00.004-04:00

My day got better yesterday.

I bought Stephen some birthday presents on ToyRUs.com and got him a gift card on line for Barnes and Noble for his birthday.

At lunch Pat brought home the Autism Awareness magnet. One of his coworkers thought it would be amusing to put it on our hood. We never noticed!

I took Olivia to her appointment for ADHD screening. He asked her some questions, had her do some tasks and asked me some questions. He gave me two very thick assessments to be filled out. One by me and the other by the teacher. I filled mine out yesterday. It was not only about ADHD but also, Asperger's, Oppositional Defiance Disorder, Turret's, Bipolar, OCD, etc. Boy, I was thinking that some of those things pertained to me! Especially in the ADHD category. Someday I'll get a referral to get checked out. I can't even get off my butt to get a yearly check-up and follow up appointments for all my ailments. This will also go on the back burner.

I just really hope that her teacher fills her assessment out accurately. She really seems to have blinders on because she loves all the positive aspects of Olivia's personality. She does have a lot of great qualities and talents but she has some things she really needs help with.

I'm really worried that as she gets older her school performance, self-esteem and ability to function in life will be affected if she doesn't get some help now. I have had concerns about her behavior for years and have really tried to wait as long as I can to get her looked at for ADD/ADHD. I was hoping that she would outgrow the behavior. Her brother has matured a lot and gained a lot of self control with age. I feel really guilty about getting her "labeled". Have any of you had similar feelings about having your child diagnosed with anything? I just hope I am doing the right thing and that it will help and not hurt her. I just want her to have a happy healthy life. I feel like I should have had some diagnosis's as a child, ADD or ADHD and Asperger's maybe OCD, and that my experiences in life have been very painful and traumatic because I didn't get the help I needed. I don't want her to look back at her childhood and feel like she struggled and needed help that she didn't get.

So we got back from her appointment and it was almost 85 degrees outside! I put on my bikini and Olivia put on her bathing suit and we went out to sun ourselves. I got to use my new lounge chair (my first one!). I have always laid my bony little body on the hard ground to lay out in the sun so this is really a luxury for me!

I went to the store and bought 5 packages of Perdue chicken flavor bites and 3 bags of Wacky Mac for $3.70 by using my coupons and the stores double dollar coupons!!

My husband and I watched American Idol and had some much needed alone time.

Thank God tomorrow is only a day away when you are having a bad today!

I hate Mondays and I'm not Supermom

2009-05-20T09:34:00.011-04:00

Started my week off on a bad note.

Went to the gym and the no touch soap dispenser is not working. I go work out and figure it will work the next time I use it (it has been fickle in the past). I get ready to leave and it is still not working. I always eat a snack after working out on my way home and MUST have clean hands. Heck, even if I didn't eat after I still want clean hands! I tell the two guys that are working. I offer to help replace the batteries. He is using a flat head screw driver on a Philips head screw and he has only one good hand he can use. I offer to help. We replace the batteries. Still no soap. Ugh!

I go out to get in my car and notice that the back right hand tire is sitting in a huge pile of broken tinted glass. I look at my windows, it wasn't from my car and there is no car parked next to me on that side. I go back in and ask for a broom and dust pan. Same guy helps me with the glass. I pull my car back and inspect all the tires. I am already paranoid about tire inflation, it is really an obsession, and find a nail in the right front tire. Joy. My poor husband, God bless him, took it to Town Fair Tire after work later that day(love them!!) where they tested all the tires, removed the nail and patched the tire for 4 bucks and change. This took 2 hours out of his day after working 10 hours.

On my way to Walmart I call Stephen's school to see how they liked the Flarp (farts in a can putty) and she tells me he bit his hand. He has not bit himself at school since January. Thankfully he didn't break the skin (he was biting chunks out of the backs of his hands for a while last fall and winter) I tell her that I expect this behavior to come and go throughout his life unless he is able to find a way to communicate his feelings (we are in the process of having the school evaluate him for assistive tech device). At least when he bites his hands now we have gloves to put on him, hoodies with thumb holes, etc. While I am at Walmart I buy him some new stuff to make a necklace he can bite or fidget with (he has tired of his beaded necklaces).

I call my daughter's doctor's office and leave a message for her doctor to write a letter about her ADD diagnosis and fax it to her school and send me a copy. I get a call as I am leaving Walmart saying there is NOTHING in her file about ADD. Really, I then explain that I filled out a screening form and at her follow up appointment (she had pneumonia at her yearly check-up and that's when I filled it out and she needed to come back to get her lungs checked out) her doctor, the ADD expert, looked it over and said that the other doctor recommended her seeing him and we discussed it and he said it looked like she had ADD. So the receptionist told me he would call me. He didn't. I had to call back the next day and talk to him. He wants me to bring her in today, fill out forms, look her over, give me forms for the teacher to fill out. What the heck!! Don't tell me she has ADD and then decide we need to jump through more hoops for an "official" diagnosis. I will hopefully find the time to post the results of all this soon.

Meanwhile, Olivia's behavior has become more hyper, impulsive, angry and fragmented. She is leaving drawers open in her room and leaving a trail of mess throughout the house and whining and crying when asked to pick it all up. She hasn't been taking her Prilosec or doing her inhaler and then lies to me when I ask her if she has taken it. Then gets mad at me for asking repeatedly if she has taken the medication and done her inhaler after finding out she has been lying about it. She even said herself that she talks when the teacher is talking, doesn't raise her hand, doesn't look where she is going at school. When I go to pick her up at school on Monday's the teacher is oblivious to her standing on a chair and almost falling on her head (I caught her when she fell), crawling around on the floor and not stopping what she is doing so we can go home. She is constantly in the nurses office with injuries from the playground. She has had her academics slip over the second half of the year. This is the same teacher that said in my meeting with her and the principal that there are no problems with Olivia's behavior other than chattiness. The principal all but told me not to get her evaluated for ADD because she already has too many kids with it in her school!

I spend the rest of the day listing a bunch of our crap on ebay trying to get rid of some of the more valuable clutter that is overtaking the house.

I got an e-mail on Monday that we need to send in receipts for the fiscal year for the grant money we receive from the state for Stephen. I added up receipts and realized we still needed to spend more of his money. I think some receipts got lost but I know we still have some of his money to spend. I spent all day yesterday researching computers just to realize that what we want to get him is out of our price range! So now I will try to buy some stuff for his upcoming birthday to use up the money.

A water main broke in a city a half hour away today and my son has a two hour delay that I don't know about until the bus doesn't show up because my kids have their shows on every morning. My son is in an out of district school and rides the bus for 45 minutes one way everyday and goes through this city. The lady at the bus company has the nerve to say "It was on the news" when I call to find out why the bus hasn't shown up. Why the heck would I expect a delay unless it is snowing!?

While I am waiting out front to put Olivia on the bus I look over at our car and see that our "Autism Awarness" magnet is missing.

My house is a mess, I feel like I am in a swirling vortex of mess and chaos. Normally, I can cope. But lately I am on overload and feeling a lot of stress and anxiety over the mess and clutter and chaos. The yard is still a total mess because no one lived here and took care of it before my landlord recently bought it and it was winter when he was fixing everything up and didn't get a chance to do the yard. I just can't accept that I am not Supermom!

Pat said during this long weekend we will do some reward charts for Olivia, make a chore wheel for everyone to help with cleaning and try to deal with some of the clutter.

Am I the only one who feels like they are expected to live up to this ridiculous ideal of doing everything single handed with a big smile on their face!?

I am not even going to the gym today because I have to get the house in order before I pull my hair out! I already cleaned the cat box and cleaned both bathrooms and am doing a bunch of laundry.

I really hope my week gets better. If Supermom is reading this, oh wait, she doesn't have time to read anything because she is too busy doing everything perfectly!!

Farts in a can

2009-05-15T07:37:00.007-04:00

Pat took Olivia out to spend some of the money she has been saving. She bought some pink and purple Sculpey, a little stuffed dog, a ready to paint ceramic cat, a stuff your own pink poodle doll, etc. Typical girl stuff. And of course she bought Flarp noise putty which should really be called farts in a can. So much fun for a dollar. She can't stop playing with it. Lovely. It's not like 2 people in this family who shall remain nameless don't already perform daily as the fabulous farting duo. Pat had Stephen try it out this morning and it was a big hit!

It sounds like a fart....does it smell like one too?

Does the Tooth Fairy have surgical skills?

2009-05-12T19:12:00.003-04:00

If she doesn't than I guess she won't be getting the tooth my son pulled out after school today! I HAD NO IDEA HE EVEN HAD A LOOSE TOOTH. I brush his teeth everyday! Granted he always has his tongue near the toothbrush (defensive moves) so I can't see very well where he lost the tooth.

He came home after school and looked at me with distress the minute I got him in the door. I asked him what was wrong and he pointed to the trunk/end table next to our couch. He wanted a tissue. I gave it to him and he put it in his mouth. I knew that meant he had a loose tooth. He doesn't like getting the blood on him when he is yanking on a loose tooth and likes to put the tissue over the tooth to avoid messes, God bless him. So then he hands me the tissue and looks at me like he wants me to get the tooth out because it is bugging him. I don't pull teeth. No way. Neither does my husband. Luckily, when Stephen was little his teeth eventually fell out or he pulled them out.

He had a real urgency with getting this one out though. It could be due to the fact that 3 out of the last 4 loose teeth he has had, had to be pulled (crowns on the baby teeth made them stick to the gum and one tooth actually had one long root still attached, blech!!). This one had a crown also. And I was not really shocked to see that the new tooth was already about 1/4 out of the gum under the old tooth. That was the case with all the other ones that had to be pulled. I think he figured he'd rather do it himself than get it pulled.

His lovely collection of crowned teeth are the direct result of the pounds of candy reinforcers he was given in ABA over the couple of years at 2 different points in his life that he had it and not allowing us to brush his teeth when he was little due to sensory issues with his mouth. I believe he only has one crown left to loose thank God! I never want to have to take him to the dentist again to have a stubborn tooth pulled.

So I took him upstairs and put Anbesol on it after a lot of coaxing and reassurance that it would make him feel better and not hurt him. He kept pulling it and there was blood. I showed him how to take water into his mouth and spit it out. This is a big milestone! He spits out toothpaste when I tell him too, but we haven't tried swishing or even just taking water into his mouth and spitting it out. He really liked doing this. And he kept pulling and rinsing and spitting out the blood. I tried to use his electric toothbrush to loosen the skin on the outside gum. He let me go over it a couple times. He was determined to get it out and I gave him some paper towel to just absorb the blood but he kept trying to pull it out. There was nothing more I could do. He was going to keep trying to pull it out and he seemed to have control over the blood. So I took him to his room and told Olivia to check on him while I finished watching "Schindler's List". I have been wanting to see it since it came out. It was soooo long and I thought I'd be able to finish before the kids got home and it was so close to the end that I had to finish watching it.

I went downstairs and about five minutes later heard him coughing. I thought oh God he is puking from the blood in his mouth. I ran upstairs and he was just standing there poking the spot with his tongue. I looked in his mouth and the darn thing was gone. WHERE WAS THE TOOTH!? I looked everywhere in his room and couldn't find it. DARN IT! No Tooth Fairy. I think he swallowed it. When all his teeth were pulled they wouldn't let us keep them. In the past he has swallowed, lost or done something with his pulled out teeth. He made a Tooth Fairy pillow in class last year and we have only been able to do use it once : ( But at least the tooth is out without a trip to the dentist and he is happy!

My hubby rocks!

2009-05-12T07:02:00.004-04:00

Yes, he rocks musically because he is a stellar guitar player and composer but he just rocks in general. I was having one of those days yesterday where I felt like the black sheep of the world and had 100 things to do and just couldn't accept that they all couldn't be done in one day. I talked to him on the phone about feeling sad and like no one liked me which usually doesn't bother me (story of my life, undiagnosed Aspie?) and overwhelmed by all my responsibilities and projects that are half finished (I have way too many interests) or waiting to get started. He gave me a pep talk and tried to make me feel better.

I just couldn't stop feeling so much anxiety. He came home and immediately made the beds with the bedding I had washed earlier in the day, vacuumed the upstairs and straightened the clutter. He also waited on me and tended to the kids. He did all this without being asked after he worked a ten hour day. I guess this is why we have been married almost 10 years : )

Rock on Big Daddy!!

Too big to pick up?

2009-05-11T16:55:00.003-04:00

My son didn't like being held most of his life and now that he weighs 60 lbs. he wants to be picked up occasionally. How can I say no? This is one of the many reasons I work out!

Check out my other blog!

2009-05-10T12:59:00.002-04:00

http://stressedbymess.blogspot.com/

Best Mother's Day ever : )

2009-05-10T11:13:00.015-04:00

No, I was not taken to a fancy restaurant, showered with diamond jewelry or given a gift card to a spa.

I was woken up by my husband and daughter this morning. My husband had a tray with a wheat bagel with chive cream cheese from Dunkin Donuts, coffee and the Sunday paper. This is the first Mother's Day I have been served breakfast in bed : ) And it was wonderful.

Then Stephen woke up and had his bread and jelly with his seizure medication in his room and then Pat brought Stephen in so he could see me open up the Mother's Day presents he brought home from school on Friday.

Pat had him say Happy, Mother's, Day and Stephen repeated each word after he said it. Then Pat said it as a sentence and Stephen repeated it. Stephen faced me at the edge of the bed and watched me open the present. He kept looking in my eyes and then at the presents.

I said thank you and that I loved what he made for me. And then opened the other present. He stayed at the side of the bed and watched me.

I turned the wheel and read each word that appeared in the cut out rectangle and thanked him for making it for me and that I loved it. He leaned towards me and made his little happy sounds and put his hand on my shoulder and rubbed his cheek on my cheek and then grabbed my upper arm and rubbed his cheek on it. This is the way Stephen shows his affection for people. He does not just do this anytime or with anyone. It is reserved for those close to him. He has never done this after I have opened presents that he has given me. He has never been so interested in watching any of us open present from him. It brought tears to my eyes : ) And then he ran off to his room. The gift of LOVE! What a great present : )

I was then left in bed alone to enjoy my breakfast and Sunday paper. On the front page was an article about mothers in jail and how heartbreaking it is for them to be separated from their children. Regardless of how they got there it made me feel very sad for them. There was another article on the front page about mothers who have lost a child. Sometimes as mothers, especially stay at home moms, we are so busy and stressed and tired with all our responsibilities that we forget how special everything we do with our children is. We forget how lucky we are that we are physically with our children every day or that our children are alive. More tears. I am such a softy. I felt like the most blessed mother on Earth at that moment.

I finished my paper and came downstairs to pay our bills online. Stephen wanted to go on the Internet. He had been waiting his turn all morning. Pat had gone on to play guitar and now I was paying bills. I explained that I had to pay the bills and then he could go on. He stood there over my shoulder waiting. Our printer is now out of reach when the computer desk is open. So I printed a receipt and asked Stephen to get it for me and he did. I printed another and he gave it to me after I asked him to get it. The next one printed and he handed it to me without me asking. And he grabbed the next one and so on. Another priceless gift from Stephen on Mother's Day : )

Here are some of the other gifts that my children gave me this week. Olivia couldn't wait to give me any of them and gave them to me as she brought them home. Not to be outdone by her brother this morning she made me a couple drawings and paper crafts. I really love the handmade gifts because they show that my children are growing and thriving. What more could a mother ask for?.

This is a box Stephen made in OT, love the bling bling!

I could have done anything with my day today and even considered a little shopping. Instead I decided to watch "Bolt" with Pat and Olivia and celebrate Mother's day by staying home and being a mother.

HAPPY MOTHER'S DAY!