Tuesday, April 18, 2017

Autism Awareness

Happy Autism Awareness Month!

My son, T.J., is 16 years old.  He has autism.  He celebrates World Autism Awareness Day as if it’s his own day, just for him.  Which I love.  

Over the years, his confidence has grown so much so that some may call him a little cocky.  Let me give you an example.

“Mom”, T.J. just said to me, as he came downstairs, “part of autism is doing just what you want to do.”

Uh, no.

I explained to him that I don’t think there is anyone, autism or not, who gets to do just what they want to do, all of the time.  

He didn’t like that.  But too bad.  It’s my job as his mom to raise him to be strongly independent, yet responsible.  Not to spoil him.  He will never learn to live independently if I spoil him.

So ok.  He accepted that one. 

Then he said to me, “I think I’ll do my homework as you go to get Dad at the airport.”

Again, no.  

One of his traits is his strong desire to keep home and school separate.  We all have had this, I think, to some degree, but this has been one of his strongest and toughest habits to break in raising T.J.  For years.  He has had full blown melt downs over having to bring homework home, and not getting everything done during the school hours.  Even to the point of lying.  We have discovered from time to time that he will not write down assignments, so that when I check his assignment book after school I will think he has no homework.

He got away with it briefly.  His teachers and I are in constant communication, so it wasn’t long before the jig was up.

And I know how hard he works during his school day to hold it together.  Sensory wise, it’s a tough place for him to be.  When he finally gets home, all he wants to do is relax.

I get that, of course.  But he also has to learn that part of being a student is bringing home homework.  And studying for tests.  At home.

He hates it.  But he does it.  I have to stay on my toes, though, because he will always try to get away with avoiding school work at home.  Always.

These are just some of the things we, as a family, have learned over time.  We have learned that it is pointless to decide that a lesson is learned, and therefore it is over.  That’s not how it works.  We have to see what the day brings us, what our boy’s mood and behavior is, what changes he may be going through, and what compromises we need to make to ensure his well being at all times.

That doesn’t mean he always gets his way.  That rarely means he always gets his way.

It is a lot of work, every day.  But that is our life with autism.

And I love this kid so much, just how he is. 

I wouldn’t change a thing.

Happy Autism Awareness Month!  We are aware!




Sunday, March 26, 2017

Brave Face

When T.J. was little, we had all these goals for when he was done with high school. It felt so far away.
We are here. We are on the edge of it.
In some ways we are ahead of the game, but in many more ways it is not the shiny success story I had my heart set on.
We are realizing that we have to readjust our ideas of "success".
It's a lot to wrap our heads and hearts around. He is amazing - he is the best T.J. he can be - and I am so proud of him.
But I am not proud of me, at all. I didn't set proper expectations in my own head, for all these years. I pushed a lot under the rug and created a much more "typical" picture of where we would be.  
But that's not reality - it never was.
And that's what I now have to reconcile with. It's selfish of me to feel badly, but it's real. And I've always been real here, if nothing else.
I won't feel badly for long, there is no time for it. But there it is. I will keep plowing ahead, and together we will find what's next for our amazing boy, and what is best for him.
Not my DREAM of what I want for him, but what his REALITY is.
I always said to fellow autism parents, "don't look too far ahead. Don't put your expectations of what you want on your kid, they will show you the way bit by bit."
I wish I had listened to my own advice. Brave face. Here we go.