Tuesday, June 11, 2013

Sam and Autism

I wrote the following the week of April 8. Beyond the general description of what was going on, I was unable to finish because I am still in the process of processing everything. Additional information added "now" is in brackets. So here is what I had to say then:

Sam began special ed preschool last week on Tuesday. The last round of testing with the school district's early intervention programs indicated that he qualified for the educational category of autism, [with varying severity of delays in the areas of language, fine motor, gross motor, cognitive, and social/behavioral.] We kind of knew this was coming, and frankly I'm relieved, as it means he will continue to receive speech therapy which he still desperately needs. [I believe that the main reason he tested so poorly in the other areas is that he does not follow directions well. To be clear, he hasn't backslid on specific skills since his last set of tests, but he hasn't made adequate progress for his age.]
So far it is just Sam and two other little boys in his class. They have a teacher, a teacher's aide, and a variety of specialists that work with them in specific areas. Rather than seeing a speech therapist twice a month, he'll be seeing one twice per week. I am elated, especially considering how much progress he's made with even that amount of help.
We also made it into the ECFE class "Parenting the Child with Special Needs" on Wednesday nights. This is the one where the beginning and end of class are with both the parents and kids, and in the middle we separate for an hour of playtime and a snack (for them), and an hour of group therapy aka parenting class, for us.


So now (in June) our ECFE class is over, and Sam finished spring term at school. This week is the gap between the end of the school year and the beginning of summer school, which will begin mid-June and end toward the end of July. The ECFE class was hugely helpful in terms of hearing what other parents are also going through, and finding some role models in terms of advocating for one's child. About two thirds (maybe more) of the class was parents whose children have autism, and the rest were parents of children who have Down Syndrome or other chromosomal conditions. It ended a few weeks ago and I am finding myself missing having that support on a weekly basis. In the fall that will start up again and Sam will start going to school for four or five days per week for a total of 12.5 hours a week rather than the 3.75 he's doing over three days now.

I'm working through the Autism Speaks 100 day kit, slowly getting myself educated about things a mom needs to know to cope with the diagnosis. Today Sam had his 3-year-old checkup and I talked with his doctor about starting the process of evaluating him for an official medical diagnosis.

Sam is talking more, listening more, and doing more things by himself than he did before he started going to school three days a week. He is excited to get on the bus, and the aides tell me that he climbs right up into his seat and starts trying to harness himself. He puts on his backpack all by himself. I have hope that he'll be ready to start potty training soon, but am aware of the reality that it will take at least twice as long, probably even longer, than it would take to train a kid who didn't have autism.

Anyhow. I am still having lots of feelings about this and I'm not sure how much of that I want to put out on the internet for the world to read. Know that there are a lot of frustrating days, with a lot of good moments in them. For every time Sam does something ridiculously disobedient or destructive there is a time when he is full of snuggles and smiles or just bursts into song for no reason. So many of the things he does that annoy me are completely typical of any toddler. He's still my beautiful, joyful, problem-solving boy.

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