Autism. I have not written much about this side of Johnny. Although not readily apparent to those who meet him, it is there. I do not like to think of Autism as who he is but it is part of him, it is one thing that makes him so unique and not merely a statistic. A friend once said his diagnosis should be quirky. Johnny is his OWN man. He has his own drummer, for sure. If you have had the pleasure of meeting him, you know what I mean.
Due in large part to early intervention and absolutely wonderful, compassionate, caring teachers, WITH an incredible sense of humor, Johnny is very high functioning. People that just meet us have stated, “he seems fine to me, how Autistic is he?” To which I like to answer, “Just enough.” Just enough to keep life interesting and everyone on their toes. But I also want to add…………… if you only knew. If you only knew how far he has come. You are able to ask that question because of the long path we have walked.
Johnny started school this week. A new year in a new school. He is in Fifth grade now and I have to take a moment to count how many schools he has attended. Johnny started school (pretty much full time) when he was three. His first school bus ride was in diapers. He was fine but I think I cried like a baby in diapers. It just did not seem right to put this Little Guy, in diapers, on a bus. He rode the “special” bus. Anyone who has put their child on this bus knows the fear and heartache. It was not an easy decision. But as decisions go, it has ultimately been one of the best decisions we ever made.
I just took my moment and calculated………. EIGHT………… he has now attend EIGHT schools. A funny thing with Autism and other Spectrum Disorders is that routine and schedules are generally a “really big deal” for these kiddos. Knowing what to expect can keep his anxiety at a low ceiling instead of a through the roof level, which can be heart breaking to watch. However, not all schools are equipped with Autism programs, which has made it necessary for Johnny to attend a new school each year for a few years. This was mostly the case when he was of the pre-school age. Add to that we are a Military Family and the numbers go up.
Sending him off this year to Fifth Grade in a new school was nerve-wracking………… for Mommy…………. he seemed fine. His biggest concern………………when was lunch?………….and did I remember his lunch money? Why was I nervous? Weeellllll, let me count the ways. Like I said, this is school Number Eight.
Fifth grade triggered something in me. As I was walking him to school it struck me, WOW!!! FIFTH GRADE, IN THE “REGULAR” CLASSROOM! I remember when I didn’t think this would ever be his reality. I couldn’t imagine him functioning in the “regular” classroom.
We have come a LONG, LONG WAY from the pre-school days of pacing and running circles around while constantly humming to soothe himself. Lunch time used to mean sitting in a semi-circle with a teacher at a table to eat and learn to tolerate new foods. Going to any assembly required headphones to block out all of the noise and extra stimulation, if we could get him there at all. On good days he would go into the “regular” classroom with an aide. The preferred activity at recess was sitting alone in the sandbox. Notes home read like this……….”Johnny is wearing a pair of “borrowed” socks. His got wet because we found him standing in the toilet. Please talk to him about this.” NOT even making that up. There are many similar notes. I kept the “communication” notebooks from every class. Actually, they are somewhat amusing. I remember then we had to laugh or we definitely would have cried. Proud to announce, that is the LAST time he stood in the toilet at school. He’s moved on to other behaviors, like making sure the teacher sticks to her schedule, literally.
As the parent of a child with Autism (no matter where on the spectrum) you constantly worry about their future and ability to be independent. I spent A LOT of time on this worry. One of his first Pre-school teachers said it best, “Johnny is going to be fine. He might not be a salesman, he might be the guy content to work quietly by himself but HE is going to be JUST FINE.” It was Mommy that needed the work………..I think.
In those pre-school and early elementary years so much seemed so overwhelming. And I’m not talking about for Johnny! Learning to manage all these behaviors, emotions and needs was all-encompassing. Like for all children. We had several years where it seemed that we would have a perpetual toddler. Part of me wanted to think, who cares, let him wear headphones and sit alone in the sandbox, he’s content. Who cares if he plays with Thomas the Train in high school. He’s happy. But……………..we knew for his success and independence in life he (and we) were going to have to experience a lot of uncomfortable moments (again, like everyone). AND we most certainly have. There were a lot of tears of frustration in those days (Johnny and Mommy). It was not if Mama ain’t happy, it was if Johnny ain’t happy, ain’t nobody happy. Actually, it is still a little like that.
Fast forward to Fifth Grade…………….No bus………..we walked to school, WITH no complaining, thank you very much. Johnny isn’t big on physical exertion. He took notebooks in his backpack, NOT diapers. No lectures were given on playing in the toilet, just reminders about turning in our lunch money and medical forms. He was walking into the “regular” classroom with some assistance from an aid. His back pack was plain black, NOT Thomas the Train (which I kind of miss). HE was telling ME his plan for doing his homework right after school. I wasn’t having to show him a picture schedule of what he was going to do. Instead of a bus aide walking him to the school door or Mommy holding his hand, he walked solo on the path………. turned around, “Bye Mom, see ya.” And I heard that Pre-School teacher’s voice in my head, he’s fine, he is going to be JUST Fine.
As for me…………… weeellll, Mommy is getting better EVERY YEAR!