Sam is getting ready to move to the high school. That means we are in the home stretch to "adult services." There are no scarier words than "adult services" as far as I'm concerned. I had a bit of a panic attack thinking about it. Mostly because I went somewhere to check out a program which offers "adult services" for Sam and realized that all the participants were individuals with significant disabilities. Not like school, where he is among the people. I know. You are thinking "Duh, Carol! He has severe autism." But the the instructional booklet that every parent receives with a diagnosis of developmental disability clearly states that if your child is not fully integrated into society by adulthood, you have failed miserably. You must wear a giant "L" on your head and hang it in shame.
Okay, there is no booklet that tells you anything useful. It's all trial and error. But there is guilt. Lots of guilt. Most of it around how much your child is included in everything non-disabled peers do. That limited glimpse of adult services made me think "Oh crap! I haven't done nearly enough to find ways for Sam to be involved outside of school." Guilt can motivate you as much as it paralyzes you. First the motivation: I found a local program that says they help people with disabilities become more involved with all kinds of people in the community.
I e-mailed and received a quick response from Sarah. This was followed with a phone call. I have to say, she did not tell me what I wanted to hear. One thing they DON'T tell you when your child is diagnosed with (fill in developmental disability label here) is your role in your child's progress. Want them to talk, you better be ready to play speech language therapist. Want them to make a sandwich? Get out your pseudo occupational therapist hat. Want them to learn how to behave in public? Time to get your Lovaas on. What Sarah described was no different.
Don't get me wrong. I am not lazy when it comes to my kid's disability. In fact, part of the reason I could hit the ground running when I received my SLP license is because I already had lots of materials I had used with Sam. (What? You don't have a laminator and bolt of velcro? You haven't given presentations to parents, doctors, and social workers? Weirdo!) But now that I am doing it all day for other people's children, then coming home and doing it with Sam on top of trying to meet the needs of my other two kids, I am a wee bit busier than I would like. (Hello paralyzing guilt. How I have missed you!)
I really wanted to be told that I could drop Sam off and when he returned......Voila! He had new skills and a plethora of typical friends in the community. (Spoiler alert...no such program exists because that is not real life.)
Instead, I was told about a networking situation where I could learn how to help Sam hook up with people who share similar interests. I was, more than a little grumpy. Especially since this whole idea was born from a place of shear panic and complete exhaustion. However, today I had the opportunity to hear about some other programs that eased my mind a little about Sam's future. Made me realize that what Sarah offered is actually a complimentary program to what lies ahead. (Motivation returns!)
Sarah, thanks for call me back so quickly. I appreciate you taking the time to explain the program to me even when I had a very negative attitude about it. I'm looking forward to giving it a whirl.
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