I was reading back through my own blog, weird right and I was realizing how much of this blog revolved around Autism for a time and how little I talk about it now. I’m not fighting for services, I’m not fighting behaviors, very often I can pretend we are normal while in public. I feel that while it is never gone, it is not at the forefront of our lives. Now I may be wrong and someone looking in at us would see different, but I feel that we are in a place, that does not demand a t-shirt or bumper sticker.
The kids have a great ABA company, with amazing tutors. No matter who they send here, we have great people in our house. We have graduated out of all other therapies which is such a blessing. For a time we would be gone Monday through Friday with speech, occupational therapy, play therapy and then 20 hours of ABA in the home.
When I recount how far I’ve come I’m hesitant to speak out our achievements. It is not so far from my mind those children who take smaller steps and those who may never take any. I keep in touch with the Autism community through blogs following high and low functioning children and adults, because I don’t want to lose site of the spectrum. On the other hand I wanna pretend to be normal, just like I enjoy pretending to be civilians occasionally. Nothing thrills me more than not having to say my daughter has Asperger’s she will need special treatment. I know that’s not wrong, and yet it feels a bit like survivor’s guilt.
I got out, my child learned to talk, my daughter learned to stop touching, my son learned to stop screaming, running, hitting (well almost). I knew children and families in the waiting rooms of all those clinics. I knew when I said this is our last appointment I was saying my child got better. I knew they would still be there week after week and part of me felt guilty. I think that is what has distanced me from my early activism, and also from the community. Nothing that was said to me, but this little bit of guilt I feel when I think…they have gotten so much better. What do you do with that?