Keeping Busy

Yesterday afternoon Eric's therapists came when he was home from school. No tantrums when he was asked to leave his movie and I turned off the TV! That was a shock. A new therapist came today. She hit it off well with Eric from the start. Eric was asking for tickles right away. He can say it so clear now. It is amazing he picked that up within a week! The down side is that he keeps going with it, constantly asking to be tickled. I think it is time Eric learned a new word. He finally decided to play ball. He can also say ball very clearly. He would say it before he would throw it. The therapist started bouncing Eric on the ball and trying to get him to say bounce. We got an approximation that sounded like ball but they accepted it. He liked it, but he would not do it unless the ball was on the therapist's lap. I tried with the ball on the floor he wiggled away. When he was a baby he would want me to bounce him on my lap all the time or he would cry and not sleep. Everything was going great for an hour. Then the therapist mentioned Eric tolorated the light being on. A few seconds later Eric ran to turn off the light. He was told he had to turn the light back on to continue playing and tickle games. He turned it back on with my help. He was OK with it at first but then the tantrums started. I could tell he had enough at this point. He asked to eat in hopes of them leaving him alone. No such luck kiddo. We are working on having him put his cup down on a coaster on a portalbe cabinet instead of having me stand there and wait for him to get done and take the cup. He did not like the therapist in there with him while he was eating pushing this. That was not a quiet meal. We gave him is squishy frog, let him play on the computer and ended the session.

Eric bouncing on his ball. It is bedtime soon after nap, which results in crazy hair he will not let mom fix!

Eric during his feeding. He is not happy about the counter and the coaster there. He wants mommy to take his cup.

Eric's next session is Thursday. Tomorrow morning he has his appointment at the CHW feeding clinic. Eric has severe feeding adversions stemmed from his autism. The provider is waiting from the notes and results of this appointment so we can modify the plans for food tolorance. The hope is that the feeding clinic and the therapist can work together on this. This is his big appointment with the psychologist, nutritionist, nurse and GI doctor. This always makes me nervous and he can be quite combative since he hates being messed with and it is so long. At least with the in home therapy we should not have to worry about having to stay there on 8 West for 10 days or having to go to Baltimore. While these are not bad things, they are just not feesible for our family right now. I will update on that tomorrow after it is over. Monday is the team meeting with the psychologist in charge of his therapy (aka the lead therapist). Plans for moving forward should be made then. This afternoon is the IFSP meeting for Jon and early intervention. This has me a little concerned. I know there are minor delays, but I am hoping I am not told more. I will update on that later today.

The Cast

We will start with the stars of the show

This is Eric with his squishy frog he got from the therapist yesterday. It was hard getting this away from him. Don't blame him, this thing is addicting. Stress relief, gotta love it. He is the man right now for this therapy. He's eating up all the attention. Six years old and all of these pretty ladies here to play with him, it's gotta be heaven. He chose the background of this blog. His love of fire engines played a part in his choice I am guessing :) .

This is Andy doing one of his favoirte things, standing by the open refrigerator looking, dancing around and straightening things up. He will be joining the action with his own therapists sometime within the next 2-3 years once he gets his diagnosis and through the waiting list. He can't miss a party and is great when it comes time for social skills training.
Others worth mentioning but not pictured
Mom-that's me.
Provider-the organization that provides the therapy
Line therapists-the wonderful folks that work directly with the boys to help them meet their goals.
Senior therapists-write the plans and goals and guide the line therapists in the treatment of the client
Lead therapist-the psychologist in charge of their care.
We are all going to have a meeting in a couple of weeks. This will be a crowd, and Eric is going to love all the attention :) .

The Reason For This Journey

My oldest son Eric was born July 26, 2002. He was one of a kind at birth. He had to come out to the world facing up which made mommy work very hard to get him here. After 4 hours of mom pushing and assistance from a vacuum extracter he came into this world. Sleep was definately not his thing. When he would sleep it would only be for about an hour. He never completed his newborn hearing screening because he would not sleep. Eating was not his thing either. It took him a while to get used to the bottle thing. Eric always loved looking at moving objects such as fans, and lights and color like on the TV. He spent much time laying on the floor kicking his little legs. He couldn't care less about looking at people. He had severe reflux so he was not the happiest little guy at times. He had these spells that the doctor told us was from the reflux. It looked like he was having a seizure when this happened. There is no way of knowing now. During Eric's first year we were taking care of his elderly grandmother in her home. I also suffering from postpartum depression, but did not realize what it was until I had my 3rd son 5 years later. His birth also puts some questions in my mind, but there is no way of knowing for certain or proving anything. It does not matter now. I already wasted more than enough times on dwelling on the "what ifs". Beating myself up over what should have been just got in the way of finding and getting the help Eric needed. God put him on earth for a reason. When he was 6 months old the pediatrician started talking about developmental delays. His dad and I were in denial. I honestly thought that many of the behaviors he was exhibiting were normal for babies, so I didn't think much of it. As time went on he was still unable to sit up or crawl when many children his age were walking. He made no attempts at verbal communication, not even babbling until well after his 1st birthday. He would concentrate intently on toys and objects, particularly moving objects. People he had no interest in whatsoever. Eye contact was non exsistant. He started getting very picky about the food he would eat. This is typical for babies and toddlers so I thought no big deal. Relatives started noticing and remarking that this was not normal. When he was 14 months old Early intervention came in and evaluated him and he began physical therapy shortly after. He never progressed with that, and occupational therapy, early childhood instruction and speech therapy were eventually added. He learned to walk at 17 months. He never learned to speak. He still has many sensory integration issues. There were many meltdowns. We could not take him out in public because he could not tolorate noise and crowds and screamed. He was not flexible with his routine at all. His way of playing was spinning car wheels and lining up toy cars, mouthing objects and kicking and flapping his arms to show he was happy. The list of foods he would accept became smaller and smaller. In time he would only accept cheerios to eat and fruit juice to drink. We had to work with a feeding clinic to get him to a point where he would tolorate oil in the juice, eventually milk, then pediasure and now Carnation instant breakfast and yougert and baby cereal mixed with milk and strawberry syrup and a cracker in his mouth. When he turned 3 he started attending the early childhood program with the school district. He went there for 2 years until he started kindergarten. He is now in 1st grade going to school full time and loving it. We have a few words he uses consistantly now. His behaviors have calmed down considerably in the last 2 years. He is more social now. At age 3 he got a diagnosis of global developmental delays, possible mental retardation and possible PDD-NOS or autism. At 2 months shy of his 5th birthday he got the official autism diagnosis that qualified him for the state medicaid waiver for in home autism services.

Andrew was born September 27, 2005. For a short while he did not want to come down after mom was fully dialated and a cesarian was considered when there were heart decels. Stubborn Andy finally decided to come down on his own and was born after about an hour and a half of pushing. Andy was a better sleeper from the get go. He actually finished and passed his newborn hearing screening. He was a better eater too. Andy and I bonded very quickly. He was so responsive. Finally I was seeing how a baby was supposed to act. He seemed to play with toys more appropriately and loved the company of people, especially cuddling. He was never big on baby food but was eating table food that mom and dad ate by his 1st birthday. Everything was looking great until the Early Head Start worker suggested an early intervention eval for Andy at about 14 months. After the first evaluation he did not qualify for services but was going to be watched by EHS and the EI service coordinator. Andy had a few words at this time and did not seem to resist much. At 16 months Andy started refusing many foods he previously ate. He started refusing a spoon and sippy spout cups. He lost the words he had. He started stimming, toy walking and becoming less socialable like Eric. He started walking around aimlessly most of the time and showing many repetative behaviors. He was not adaptable to different situations anymore. Two months later he started with early childhood instruction and occupational therapy. Speech was added a couple months later. While all of this was unfolding I learned of my very unexpected pregnancy with my 3rd son, and his birth June 6th, 2007. After this birth I went through another bout with postpartum depression. This time I was properly diagnosed and treated. I also had a round after I lost a pregnancy in September 2008. I am still on medication and in counselling for this and to help me through this journey with my sons. Andy made minimal progress in the birth to 3 program and is now attending early childhood special ed preschool and is loving it. We took him to the CHW developmental clinic for an evaluation and got the same generic diagnosis as Eric did. The only reason we went this route is that we wanted to rule out any medical reasons for this. We are still going to have a genetics workup on all 3 boys to see if there is any reasons there for this happening. We are in the process of trying to get the state approved diagnosis for Andy but are having problems getting doctors to see him because of the CHW eval and the possiblility of insurance not paying because of this. Hopefully we can get this going soon so we can get the ball rolling for Andy too.

This has not been an easy ride. Seeing the progress that Eric has made already gives me hope. These are special boys and I was entrusted by God to care for them. I would not trade it for anything in the world.