I feel like a dinosaur.
The ease of communication and sharing amongst parents today is phenomenal. When I think back to when Ted was in kindergarten, local parents got together in support groups, which always fell apart after a few meetings because it was a hard thing to do when you have special needs kids. Getting a babysitter so you can go to a meeting, well, HAH, that just didn’t happen. Moreover, having the energy at the end of the day to go to a meeting, well, another HAH, because all I really wanted to do was go to bed.
So these blogs are awesome. And before I go any further, I just have to say that I admire the (mostly) moms who pen them. Their ability to write so eloquently about the pain and the joy, AS THEY EXPERIENCE IT, is to be commended. For I write with the pause that time brings, my emotions tempered, simply reflecting on what was. A much easier task.
Still awkward with following blogs and unsure of the etiquette, it is only with the upmost respect that I acknowledge having read Outrunning the Storm’s post about the IEP meme that is going around the Asperger blog world. Thank you. I also believe in transparency and sharing the story of what we have gone through, or are going through, and the lessons learned from those experiences.
So with that said, I would like to participate in the IEP meme. But I am going to do so with a twist. Since Ted has graduated and we have 16 years of history, I will break it down into multiple posts centered around these three periods: The Preschool Years, The Before Teddy v. County Board of Education Years (K-3) and the After Teddy v. County Board of Education Years (4-12). Maybe even, if there is interest, I can delve into what happens after the high school years. But first things first…
The Preschool Years
Diagnosis: Ted was diagnosed with Asperger’s in 1995. He was four. This was done through a private-practice school psychologist paid for by us.
Occupational Therapy began in September 1995, two months before diagnosis. (Although we were seven months into TRYING to get a dx.) He went 45 minutes, twice a week for almost two years and was paid for by insurance and copays.
At the time of initial assessment these were some of the issues:
Fine Motor: No hand dominance, could not cross midline, inconsistent supination, unable to cut, unable to copy simple shapes, unable to hold utensils or pencil.
Gross Motor: Couldn’t balance on one foot for more than 3 seconds, unable to catch large ball. Kicked, hopped and threw inconsistently.
Conclusions: He made major strides in OT and as a result there was a decrease in his frustration level. Among many important school-ready skills he established hand dominance, grasping a pencil and crossing midline.
School Psychologist. Following the diagnosis, the first priority was to return Teddy to a preschool setting. The psychologist selected a private preschool and attended with Teddy to transition him to school and to train the teachers. The preschool and psychologist were paid for by us.
Conclusions: What can I say about the woman who saved my life? I was drowning and so was my son and Louisa threw us a life-line. The day in her office, when she first said “Asperger’s” changed me forever. I was no longer crazy, my son was no longer crazy and I was not ever so alone again. She is one of the most important people I will ever know in my life, not to mention one of my very dearest friends.
In a “funner” moment. Louisa came to visit a few years ago and here we are together on the Jetski.
Physical Therapy evaluation was performed to get recommendations for a sensory integration approach and treatment strategies for both home and school. This was done in May 1997 prior to Ted’s start of kindergarten that August. This was paid for by us.
While rereading the evaluation today this one sentence summed up my almost six-year-old,
Teddy is an intense, motor driven and hyper-active child who seems to want to please and cooperate, but who is experiencing moderate to severe difficulty with emotional and physical self-modulation including listening, calming, as well as socialization and activity transitions.
Conclusions: I can’t say enough about how important it was for ME to better understand the challenges Teddy faced with his sensory system. In many ways it was a force greater than himself that dominated him. Learning techniques to help him get some control was vital and seemed to me to be the crux of his disability and thus its management. Honestly though, the school system did nothing to incorporate this knowledge.
Developmental Nurse Practitioner was seen for medication visits every three months. I also did counseling sessions with her. I was actually TAUGHT to be a “helicopter parent.” Such is the life of an Asperger’s mom. This was paid for by our insurance and copays.
Conclusions: Did I like giving my kid medicine? Absolutely not. Do I think it helped? I honestly don’t know. I do believe most of the prescribing was guess-work. And we had many negative side-effects. For example, on Dexedrine Teddy couldn’t sleep or eat. One night he quietly sat under his sister’s crib and cut off all his hair and neatly placed it in his Yankees baseball cap. We discovered this when we checked on the kids before we went to sleep. That was the last dose of Dexedrine he took. The next day we had his head shaved and I can’t tell you how many people thought my underweight, bald child had cancer. Ted has not taken any medication since he was 13.
PeeWee Bowling: Not a service but something I got Teddy involved in so that he could participate in an activity. Sports such as T-ball and soccer were out of the question because Teddy couldn’t function in a group. I selected bowling because it was a parallel sport. His performance was entirely independent yet he was alongside others, taking turns, and part of a league. We did this every Saturday morning for a year.
Conclusions: Excellent activity. Bowling is VERY structured and predictable which helped Teddy’s comfort level. Moreover, the bumpers allowed success with every ball and was good physical therapy as well as social skills practice. It also let him be NORMAL. That was priceless.
That pretty much sums up the preschool years. Next, the K-3 years. Yipes. Those were, well, let’s just say, that’s going to be several posts.
Thanks for reading. Maybe something helped. I sure hope so. Or maybe it just helps to know someone has been where you are now. As my friend Scott says, “God bless the Internet.”