Thursday, December 31, 2009

Happy New Year!

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!

Wednesday, December 30, 2009

Using an ipod touch and Proloquo2go as a communication device

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.

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?

Friday, December 25, 2009

Happy Holidays!!

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

Monday, December 21, 2009

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

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 : )

Thursday, December 17, 2009

Winter, OCD, germs and handwashing

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?

Wednesday, December 16, 2009

Autism and stimming, echolalia

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?

Monday, December 14, 2009

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

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 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 : )

Wednesday, December 9, 2009

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

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!!!

Monday, December 7, 2009


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.

Thursday, December 3, 2009

If you focus on the rain you might miss a rainbow

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.

Wednesday, December 2, 2009

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

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!

Tuesday, December 1, 2009

Why I hate the "R" word

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.

Saturday, October 24, 2009

Olivia at the Fall Festival

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

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.

Monday, October 19, 2009

Don't believe the hype! My universal healthcare crusade

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 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

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.


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 : )

Monday, October 5, 2009

Alive and kicking!

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?

Saturday, September 19, 2009

Siezures and doctors from hell for my kiddos

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?

Thursday, September 10, 2009

I'm on a mental vacation....

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 : )

Friday, September 4, 2009

Olivia's Neurology appointment

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.

Friday, August 14, 2009

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

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.