Friday, June 4, 2021

What am I suppose to do now?

This question has been in my head since the day I first heard "autism" being used in regards to my Kiddo.  It never goes away and it's never been answered.

Sometimes we have really nice moments.  Long stretches of just good times.  Usually when we have a good solid chunk of a routine being followed.  He's content.  I feel slightly confident.  Clearly, we're on the right path.

Then the question reappears.

What am I suppose to do now?

For every phase we've left behind us, for every struggle and challenge we have had to rise to, another one quickly slides into it's place.  I'm forever waiting for that other shoes to drop and it will because Kiddo hates wearing shoes.

He's 17. The window towards aging out of school is closing in on us.  The worst part of that scenario is that Kiddo is completely and innocently oblivious to it.  In his mind, he probably thinks he will go to school FOREVER because that's all he knows.

 I'm a former job coach and Pre Voc instructor. In my mind, I have always thought "HE. WILL. HAVE. A. JOB."  Even if I have to start something myself, my boy will be earning a paycheck. Now that we are closer to that part of his life, the reality is I'm probably going to have to do just that.  Unless something happens overnight and thousands of resources and supports are put in place for disabled adults.  Seeing as we, the autism community, can't even all agree about whether we should say "autistic" or "person with autism" without a fight, I don't have much hope that these much needed changes will happen.

And that's when I think again "What am I suppose to do now?" the most.  Because just once I really want to be a little selfish, a little lazy, a little chill and laid back and NOT have to worry about creating something out of nothing.  I want someone else to do it. So very badly. I don't want to be a leader or an advocate. Sometimes, I even want the problems that we won't have. That we will never have. Just so I can have the novelty of them.  Please, I would relish fighting with my Kiddo over wanting his own car or staying out past a curfew.

Even writing this blog lately, I find myself thinking "What am I suppose to do now? What am I suppose to be writing about?"  I've been doing this for almost nine years and one trend I have noticed is by the time you have read this blog post, ten new autism blogs will have been born.  They will be fresh off the boat into Autism land with their kid only diagnosed a short while ago. I will look at them in awe wondering how the Hell they are doing that. I was barely treading water when we first dived into all of this.  I have a hard time finding other blogs dealing with teenagers on the spectrum.  As a friend pointed out to me "Well, it looks like it's gonna be you doing it."

Now we are also back on an anxiety spike. Gee, thanks COVID. We are really seeing the long term effects of what being out of school did. While we were lucky that he was able to return to in person, the program is now vastly different due to COVID restrictions and for lack of better words, it sucks.  Gone are the trips out shopping to foster independence and job training. Just in school, all day, It's just not the same at all. You can practice those skills all you want in a class but a job site cannot be replicated in a classroom.   Kiddo, according the his teacher, is doing great at school. Like clockwork though, he lets it all out when he comes home. While anxiety in the past has been destructive and aggressive, it still is very much present lately.  He is scripting galore and wants us to join him in the misery. Yes, we are harassed into repeating the scripts with him. Sometimes I rattle off the same twenty or so lines and it's enough to snap him out of it. It makes him feel content enough that I have heard him. Sometimes though, I am just so tired of doing it.  His anxiety gives me anxiety.  Add in the fact for the last few nights, he's just not sleeping. Therefor, we are not sleeping. It's hard to stay sharp and focused on what he needs when all I want to do is crawl under a blanket and sleep for a hundred years.

What am I suppose to do now that we have this much anxiety again? I know we have had a lot of changes lately with school. How long will it take till this new normal becomes our normal?  I remind myself of the three month rule. (Which you can read about here.)  There will be a moment down the road where we will slid back into a comfortable groove. I hope.  

But what am I suppose to do now till that happens?  Figuring that out is hardest.

Kiddo's answer?  Order more fries. Okay, he might be on to something,


  1. I definitely feel you! I have a 20 year old grad who still has not been able to get a job due to covid and an 18 year old who will be a senior. Both are on spectrum and she will be going to public high school next year in a new county. Just summer break transition has been super hard. And trying to figure out my son's job possibilities and trying to locate the support he needs is so difficult. I pray ALOT for wisdom and it does smooth out over time. The anxiety right now for my daughter is NO JOKE. We had an explosion this morning!!!

  2. I run a FB group for parents of SN kids/adults 16 and over.

  3. i have Aspergers and m.e . it would help great deal too take part in Research blog.http;// twitter.supersnopper MARK