The good, the bad and the ugly

The good news is Robbie's speech seems to be improving and he is mastering many of his tasks in ABA. The bad news is he has been out of control hyper. Sleep stopped last week and he went 6 nights with very little sleep. He would fall asleep at 8:30pm and wake up at midnight. From then on he was wired. Jumping on the bed, running down the hallway, talking about some movie he had in his head. Exhausting! Then he would fall back to sleep somewhere between 5am and 6am. ( we were late to school 2 days last week)
The other difficulty is the repeating of movie lines. Robbie can recite most of the movies we own. There are times when he gets lost in that world. His aid had trouble getting his attention this week because of this. So- what do we do- other than cry and pray- We decided to restrict his diet again. Gluten free, Casein free, sugar free. That began over the weekend. No improvement yet but I'm hopeful.
We're gearing up for our child study team meeting next week to discuss Robbie's summer program and next year. We're prepared to fight. He needs more than he's getting. He will loose a lot of what he's learned this year over the summer. As we read all the books written by celebrities who have pulled their children out of the Autistic spectrum I want to scream. ( If Lexi wasn't napping I probably would) They invest hundreds of thousands of dollars annually on services for their children. Rodney and Holly Robinson- Peete wrote a book stating they spent $160,000 a year for 4 + years to help their son. While that's wonderful it leaves me feeling even more helpless. What about the rest of us? I lost my job in December and we're biting our nails waiting to see if my husband has a job for next year. If our school district doesn't step up and help I fear the worst. So now I hope for the best and make sure to tell Robbie how much I love him every chance I get! He will repeat it back to me- and I know even though he is repeating what he hears he means it!

Engaged in Learning

Robbie and I have ramped up our "work". We've been reading a lot more books, working in preschool workbooks and naming as many things as possible. The down side is he gets really tired but the up side is he has become so engaged in learning. When we're reading I'll ask him what something is. He will proactively point to an object and say "this one?" That's his way of asking what an object is. When he sees the interactive preschool work book- complete with many pages of stickers, he is excited to get down to work. He has been tracing his letters and shorting items correctly. Once again these steps are small and his sister is rapidly catching up- almost passing him as far as vocabulary but that may be a good thing as well. She pushes him. I am just excited to see him excited about learning. :)

Sensory friendly movies

Today Robbie and I went our first "sensory friendly movie" sponsored by New Behavioral Network. The movie- How to train a dragon- was shown but not in 3D, the volume was lowered and the theatre was full of Autistic children, teens, adults and their families. It is a great idea because the kids are able to stand, speak and eat snacks their parents had provided. The reality is it's noisy and distracting because of this. The boy behind me was kicking my seat- his mother apologized. I looked at her and said " don't worry about it- really- we all get it." A few minutes later Robbie kicked the seat in front of him. I apologized to the man sitting there. He looked at me with the same genuine expression I had given the women sitting behind me. " don't worry- he's fine" he said. While it's nice to have these interactions with others who really do get it, I wondered if the movie was too distracting for Robbie. He's been to movies before and is usually pretty good. I ensure we get an empty aisle- usually on the side of the theater so he can get up and walk around. He sat for most of the show but did get a little over stimulated and decided to leave early. We got popcorn on the way out because "I want popcorn, I want popcorn, I want popcorn- etc" was all I heard as we passed the concession stand.
I called my husband on the way home because he is the only person who really understands what I'm about to write. This event was sad and depressing for me. I got a glimpse of what Robbie's life may be. A lot of the older kids seemed further on the spectrum than I would classify my son- but I may denying the truth a bit too. His progress is so slow that I am scared. Really scared. (To make matters worse as I try to quickly type this Robbie is pointing to the computer yelling "fish". He wants to play the backyardigans mermaid matching game on nickjr.com.) I saw all these parents today with a combination of love, exhaustion and sadness in there eyes. It was nice to have a place where compassion is truly there, but depressing to think of myself as one of these people. I know that sounds awful- but I have to have hope that my son will not be one of those teens who looked drugged or worse maybe, the one's that looked disheveled and were unable to control their tics and noises. The weird kids. Or the adult man in line behind me who came by himself but could not look anyone in the eye and was obviously uncomfortable. Or am I even more worried about the cashier at the ticket counter telling me "this showing is an "autism showing". That's why we're here was my response. If anyone has been watching Parenthood- my new favorite show on NBC Tuesday nights- one of the parents sums it up best. Her son was diagnosed aspergers. You worry all the time. Should you try something new? A new school? A new therapist? Should you stop something you're doing? Do you push, do you not push? And if you're not worrying about your autistic child -you worry about your other child? Am I not paying enough attention to her? Am I giving her what she needs? Is she picking up on some of the bad behaviors? Will she be ok - or feel like she was ignored like the daughter on the show does because so much of your energy goes into raising a special needs child. And then how can you carve out time for your marriage and not constantly talk about your fears for your children? Are you going to go crazy?
No- because you can't. Your family depends on it.

My " Soccer Monster"- or not

Robbie began his first day of soccer today. The group was made up of 6 children ages 3-5 years old. I spoke with the coach a few times prior to today. He seemed slightly uneasy but ok with having an autistic child in the program. I didn't really have a goal in mind before today- I just wanted to see how he handled the situation. I prepared him as best I could- explaining he was going to be a " soccer monster" today just like one his favorite Backyardigans episodes. I tired him and his sister out early at the lake so they would both nap and be refreshed prior to the 5 pm soccer lesson. As I pulled up to the park where the soccer was being held I knew my "preparation" would not have helped. The soccer is taking place in a small park with playground equipment and swings immediately in the vicinity. My friend who had mentioned soccer to me because her 4 year old really enjoyed it last year was also put off by the location. She mentioned that the playground was a definite distraction and last year it was held in an open field.
I watched all the children- with the exception of mine- follow every direction that was given. " sit on the ball like a chicken"- hands behind your back and kick the ball- drills- etc. The coach was clearly uncomfortable with my son. His assistant made a more valiant effort and I explained " My son is Autistic' - which I swear I will have tattooed to my body- ( sorry mom - but I will) and he may not answer to his name right away. If you get directly in his face and force eye contact he will respond. She said thank you for telling me. I was angry that the coach hadn't let her know. Robbie spent the majority of the soccer lesson on the swings- where he feels most comfortable. The coach did invite him in a few times but Robbie was adamant about what he wanted. The coach had told me prior to the class he would refund my money if it didn't work out. At the end of the class he mentioned that he thought I would call him for a refund.

This is what I Know- Robbie sat on the ball " like a chicken sits on an egg"- a few minutes after he was asked to and all the kids where already sitting. The coach gave Robbie a sticker with his name on it and asked him to put it on the front of his shirt. He did it- upside down- but he did it. 2 weeks ago at Robbie's class field trip the sticker with the name tag was a battle. 3 times- finally on his back so he didn't notice. These are small steps- but steps!!
My new goals for Robbie--- He will high five the coach when asked. He will participate in 1 drill. He will watch a portion of the time. The rest is up to him and really for him. If he wants to be on the swings 75% of the time- I'm ok with that. My husband and I had a discussion about this program a few weeks ago. His fear is that Robbie is not ready. I don't disagree with that. My fear is if we don't push him into situations that are tough he'll never be ready. It has taken months for Robbie to sit at circle time in his preschool class- but now he does it. As I told the coach- everything you teach to the other kids will take twice as long for Robbie to pick up. What I really need to tell him is- it's ok if he never picks up most of what you say. I want him to feel comfortable in a new environment and participate a fraction of the time. It he feels ok by the end of the season- next year he may truly benefit from it again. And if not- so what- we tried!!

The most challenging part of this experience is the coach and some of the other parents- ( with the exception of my friend who has been so helpful in these situations- Thank you Kelly if you read this!) They can see Robbie is different from the other kids and are not sure how to respond to him. I feel like I have a duty. My son is autistic- smart, funny, loving, athletic and beautiful- but still autistic. The way he is handled needs to be a little different. The number of diagnosed on the autism spectrum increases every day. 1 in 110 nationally- 1 in 94 in NJ- 1 in 54 in boys versus girls. What is going on? Someone PLEASE find a cure!!!!!!

SLOW progress

Robbie's had a few very busy weeks. He turned 4 years old, had a party, went to a party and had a school field trip. Robbie LOVES his birthday- or really birthday's in general. He had a blast opening presents with Mom, Dad and Lexi and waiting for his cake. He also had a blast at a friends birthday party. It was held at the Funplex- which I refer to as chuck e cheese on crack. He played in the foam frenzy room, rode bumper cars, ate cake and wanted to explore some of the other activities. I saw a parent from the daycare we used to go to. I mentioned Robbie was autistic. She had no idea.

The school field trip was a little more challenging. Garden State discovery museum was packed with multiple field trips. We did our best to get through the day- but honestly it was tough for a lot of the children. I did get to have a conversation with Robbie's preschool teacher. I explained that we feel next year Robbie should be in a full day program. She voiced a few concerns about her school and suggested I look into additional programs. So the search begins!

As the title of this entry states progress has been slow. He makes small gains and then regresses. It's very frustrating- especially as I watch his sister pick up words and phrases at lightning speed. Her vocabulary will out number his within the next few weeks. Simple things like throwing garbage in the trash can instead of the recycle bin. Lexi gets it but every day I have to remind Robbie which is which. The heart breaking part is I see him trying really hard. We play matching games on the computer and I make him name the objects. When he doesn't know the answer he looks at me- waiting for me to tell him. It's the same expression of emotion I remember from my school days. When the teacher called on me and I didn't know the answer or was not prepared. I'd look at them pleading for the answer.

So we continue on- searching for the "right" program. Trying to get more services. Teaching him basics at every opportunity. Hoping he will "outgrow" his diagnosis. Hugging him tight every chance we get :)

"Robbie has a best friend"

While we continue to have ups and downs as far as Robbie's progress is concerned- I have a great up to share. At school recently one of the other mom's told me Robbie was her son's best friend. It was awesome to hear- that he had made a real friend. Rob asked if Robbie knew he had a best friend. Truthfully- I wondered the same thing. I asked the other Mom if she wanted to arrange a play date for the boys. She was thrilled. Her son has a mild form of cerebral palsy, a speech delay, and ADHD. I wondered if Robbie would actually play with another child or play around them. To my delight he was excited when his friend arrived and after a few minutes really did play with him. They ran around the house, ran outside and played on our swing set. The little boys Mom was excited because he said Robbie so often and did not have many other words. They were both looking out of the "telescope" in the play house and Robbie put his hand around the other boys shoulder as they made up their adventure. They went down the slide and Robbie said "come on" to the other boy so he would follow him again. I could have cried. My son had such a big grin on his face all afternoon. He has a friend! :)

The Funplex- or Chuck E Cheese on crack

This past weekend Daddy and Lexi went to a friends birthday party and Robbie and i went to the Funplex. Robbie has been invited to a birthday party there in a few weeks and I wanted to see how he handled it. We walked in to a large room filled with people, noise, lights- pure chaos. I was nervous. I looked down at my little boy and a smile crept on his face. He was excited!! We meet some friends and proceeded to the bumper cars. Robbie's friend ran to get onto the children's bumper cars. Robbie was nervous and stayed with me. We watched for a bit and then he grabbed my hand and pointed to the larger bumper cars. These would fit an adult as well. we waited in line. He was just tall enough- thank you lord!! He picked a car. I drove. He had a blast!! Our friends who were watching could not believe the huge smile on his face as we got rammed by the other cars. (That seemed to be the best part.) When our turn was over- he got out and we walked back over to the kiddie cars. He still was not interested in going on them by himself or with his buddy. We went back into line and waited. He was so good waiting in line. I was proud! we took our turn- had a blast and went on the next activity- snack time! After having a snack- juice box and goldfish crackers- we proceeded to the next thing. It's called foam frenzy. Loud, loud, loud. A million foam balls are flying by your head. there are tons of shooters and a large structure in the middle that shoots ball out in all directions. (Robbie was in kid heaven- and adult hell)

The hard part of the day- the transition to leave. Robbie did not want to leave. He was having fun and honestly we hadn't stayed that long. But as life happens- we had to get home so Dad could scout a basketball game. I gave Robbie the 5 minute warning and the 1 more turn warning. Then I had to physically restrain him and carry him out. (no easy task these days- he's almost 4 years old and wearing 5-6 clothes- big boy!) I did get quite a few looks of horror and pity. But we made it outside, he calmed down and walked to the car on his own.

All in all - it was a great day. Robbie surprised me once again with his ability to handle " chuck E cheese on crack" and his ability to wait his turn. That is tough for any child. We are going to go one more time before the party- preferably on a weekday because Mommy feels overwhelmed on the weekends!!

Wish us luck!