Every day, Nolan continues to make progress. His therapists are proud of him, we are proud of him, but it is eerie to hear them rave over this progress and see the data indicating all of these gains for things he had months/a year ago.
We are no less proud of these accomplishments because growth is growth. He is working hard and deserves recognition for his accomplishments, it is just a unique feeling to celebrate the same thing we celebrated once before–and apprehensive if it will stick this time.
How does one prepare to be happy for someone for something they did and then that there is a chance it could disappear. It is hard to prepare, it is hard to understand, and it is hard to wonder if it is going to stick or not. Its just hard.
Another difficult experience to go through is hearing your friends’ kids (NT) making age appropriate progress and you think, we USED to do that. There is no hard feelings towards those parents–they should be so excited of all of their child’s milestones just as much as we all are! Even if Autism parents lived in a bubble and never heard from their peers their child’s accomplishments, a lot of assessments of children this young is parent interview. They ask a list of questions, can they do this, can they do that based on what is developmentally apprpriate. I think it would be easier to say, “no,” but we just keep saying he USED to. It is so hard to basically say, he was on track, now he isn’t.
I want the world for my child, I want success for my child, and I want happiness for my child. I don’t want everything to be a struggle. I may not understand, I may celebrate the same thing a million times, but I will NEVER stop loving this kid.
Some may read this and wonder the purpose of this post, this blog. I guess it is to 1) release my feelings in a healthy way 2) find community in other Autism moms 3) explain to those close to me what its like being an Autism mom 4) allow other Autism moms to feel less alone/guilty for their feelings.
Moms, if you are feeling sad about regression, scared what the future may hold, or just plain I have no idea what I am doing, where I am going, and what we need to do next to make my kid the best he/she can be, just know you are not alone.