Sunday, April 1, 2007

5 to 6 Years

Fall 2003 5 yrs

A surreal experience, the district gave us the hours we needed for Leo, no questions asked! Natch, they were blown away by our team’s presentations, but please, WHEN does it ever make sense or it the right thing to do??

Program Highlights: Fine Motor, Conversation, Role-Taking and Socio-Dramatic Play, Social Judgment, Cause and Effect, Emotional Causality, Perspective-Taking, Predictions and Inferences, Executive Functioning; Leo's progress has remained consistent across all environments. He demonstrates increased independence in both social environments(preschool and day care); and has been able to successfully participate in an ever-widening range of home and family-based activities as well.

Schedule: 5 hours a day of school, therapy before and after school each day, 2 play dates per week

December 8th 2003; (5yrs 2 mos) Inclings of impending lawsuit. Leo flourishing.

March 2004 (5yrs 5 mos); Lawsuit, fading services

Finishing Services – Summer 2004:(5 yrs 9 mos) He was deemed autism free that summer.

June 22, 2004. Leo began school label and therapy free. He no longer needed a shadow or any other services. We had our last IEP meeting where we closed his file right as school began. We were uncertain if we should have the OT monitor his fine motor or not. We decided that it was too risky, to blow his anonymity, so in September we officially closed his IEP.

As a preschooler, Leo received all of his related services such as PT, OT, and SLP at this elementary school. In our district, this occurs when your child doesn’t attend the special ed public preschool. These files were removed as well from each office. The therapists were delighted to do so, and are now big believers that Autism is a treatable disability. Only the principal, the school psychologist, and the therapists know of Leo’s past. His teacher, the parents, and Leo’s peers do not. This was a major coup, but we managed to pull it off. Lucky for us, there are so many kids (30% at least) that get pulled out for delays and issues, that seeing Leo in speech as a preschooler didn’t raise suspicion.

Many of Leo’s friends continued to receive speech and OT in kindergarten and 1st grade, but he didn’t, the kid with the former major disability! Of course, if something happens in the future, we can always open a new one – it’s Leo’s right by law. An issue is an issue.

Summer 2004 (5 yrs and 9 mos)

Succeeded in getting full reimbursement plus attorney’s fees for ABA therapy for the school year. For the first time in 4
years, we were able to take a vacation longer than one week. Therapy kept these trips short. Leo monitored himself beautifully all summer long at camp and on vacation. Each day he found different things to do, kept himself busy with his new downtime. In California, he handled his new environment beautifully – really seeking out new people and new experiences. He had very little trouble with no longer seeing our extended family – his therapists. We were sure to visit them occasionally and keep in contact to ease the transition for all of us.

Fall 2004 - First Day of School Story (5 yrs 11 mos)
Began kindergarten, no services! Because of the way Leo presents, it has been possible to keep Leo’s label unknown to his peers and their parents and friends. With the successful completion of ABA, Leo was able to enter kindergarten with no shadow or other obvious ABA services. His classmates at the elementary school will have no reason to know of his disability or of the obstacles he has surmounted. Without the stigma attached to an autism label, Leo should be able to be treated as an individual, not as a label.

That first day was a very exciting and nerve racking day for us parents. Leo was not nervous at all, and really looking forward to seeing the kids he knew and being a big time kindergartner. My former arch-nemesis, Leo’s former favorite perseveration object, the school bus, picked him up like he’s been doing it all year. Leo got on, looked back and waved. Crazy! We videotaped the whole thing – from getting dressed, to waffles, to backpack, to bus.

His little sister asked if she could bring her stuffed animal to the bus stop. Leo got very upset and said no. We asked him why he didn’t want Sydney to bring her animal (not an unusual occurrence), and he said “This is MY special day today, and I want her to concentrate on ME, not on her stuffed animal”. And amazingly, she agreed to leave it at home. I love my kids! Unfortunately that morning we learned that Leo’s grandfather had died the night before. We didn’t tell him of course, until later that afternoon when we had no choice.

We sat him down and told him what happened. He grew very solemn, and said my autistic son said “I knew you were going to say that”. I had prefaced the news by reminding him of his grandfather’s age and how sick he’d been. Then he burst into tears. He said “Grandma must really miss him, she must be really sad”. A few minutes later, my autistic son said “Big D didn’t even get to hear about Kindergarten.” He then looked down at our new puppy, and said” And he didn’t even get to see Shawna”. We explained to him that he can see everything from heaven, and that he’s sooohhh much happier now and is very proud of him. I quickly summarized in my head his responses to what had happened, noting his perspective-taking, empathy, intent, and prediction within that exchange. I still have that therapy hat on I suppose. Later, he looked forward to going to NYC to cheer Grandma up and spend the night.

With one month under our belt, I am living a surreal life. My new goals are to take better care of myself (the usual suspects like loose weight, eat better, exercise regularly), and to focus a little more on my daughter – get her into more activities and get her some friends.

Leo continues to blossom. I am still nervous that one of the parents will find out about his “past”, and I continue to wonder about Leo’s development. Will I ever be able to look at one of Leo’s play dates again without inspecting, casually quizzing the mother, asking myself if Leo does has their skills, does this child do what my child does? What if they are all wrong? What if we made a grave horrendous error? And we pay dearly later and have to start over? What will middle school be like? What will puberty be like? Will my life always be this way?