My son, "The Last Sandbender"

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

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!

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:

Floortime Light Mama

Look Me In The Eye

Mother of Shrek

Pipecleaner Dreams

Static Vox

Birthday parties and Autism

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

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!

Lindt partnership with Autism Speaks

What to expect when you're expecting-the unexpected

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

Don't mourn for us

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

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

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 : )