Friday, October 9, 2015

Feeling Alone with Autism, Again

Yesterday was Parent/Teacher conference day.

Our son, TJ, is 15 and has autism.  We are used to our parent/teacher conference days by now - we have already met his teachers at open house, and at a team meeting before that, organized by his special educator.  

This is all routine for us, and has been for a while.  And we are in such close contact with TJ’s educational team that at these meetings, there are no surprises.

What was new for us last night, however, was the Adult Services/Transitional informational meeting that we were invited to, and attended, after our conferences with TJ’s teachers.

TJ is a sophmore in high school, so we were grateful for the opportunity to learn about what possible services and programs could be in TJ’s future.

There were a handful of parents there;  in fact, there were more presenters than families.  At first, I thought this was great - there must be so many opportunities for kids like TJ upon high school graduation!

Then, one by one, the presenters spoke about the organizations they represent.  Every program sounded wonderful - employment and educational opportunities with organizations that think of the whole student - academically, socially, and including life skills too!  How great!

As I sat there and listened, however, I began to feel that slow creep of fear.  There is a lot to know about these programs.  And this part of his life always felt very far away - I don’t know if we are ready.  And a lot of the employment they are speaking of are jobs in supermarkets, or restaurants, or front desk jobs at gyms…TJ loves animals and really knows so much about them.  Where would he fit in?  Would he fit in at all?  Do we live in a terrible area for him, with no place to fit his interests, and do we have to think about moving?
All of these thoughts came flooding to me at once.  And then, like a swift kick to the head, came another thought:

I don’t think TJ will have the typical “apply to college and wait for acceptance letters and celebrate with your family when you make your choice” experience.  

This hurt.  A lot.  And I don’t even know why.

I learned a long time ago that most of the experiences that typical kids have, TJ doesn’t.  I have mourned these losses and accepted them, and have learned to treasure every small success he has had, because for TJ and for us, they are not small at all.  

I thought I could handle anything.  I thought I was prepared for whatever came next.

Turns out I’m not as prepared as I thought.

And then I thought of my friends, waiting in line at the gym where parent/teacher conferences take place, to talk to their kids’ teachers.  

And I suddenly felt very left out, very different, and very alone.

I know, logically, that I’m not alone.  Sean, my amazing husband, was sitting right beside me.  And if he was feeling any of these same feelings, he wasn’t giving it away at all.  

I also know that my experiences at those conferences in the gym are similar to that of my friends’ experiences…..right?  Aren’t they?  Or am I oblivious to the fact that there are discussions that parents of typical kids have that we weren’t having?

And in that crowded classroom, I felt like an outsider.  All by myself in that busy, bustling building.

Do we get to make college plans like other parents?  I know that if we do, it certainly won’t look the same.  We will have to work with an outside agency, whose help we need to plan separate living arrangements, and forced socialization, and learning how to share a kitchen, and learning how to take a bus around town.

And that’s just the tip of the iceberg.  

All this time, I suppose that I thought that TJ would go to college, discover his passion, and magically translate that into a job.  It was always my dream for him.  But what if my dream and his dream don’t match?  They most likely won’t.  He probably won’t want to leave home, much less leave the state, and I dreamed that he could go to college anywhere he wanted.  

He probably will always want to stay close to home.

I feel like I’m on the edge of a cliff, looking over, and not knowing what comes next.

And I suppose in some way, I am.  The future is unknown.  The things we have to consider for TJ’s future are much more detailed than that of your typical kid.  The planning has a lot of hands involved.  There are a lot of new things for me to learn as this next big step approaches.

I’ve felt this way before - just before TJ started kindergarten.

So today, even though it hurts, and I feel like an outsider compared to other parents of sophomores, I know that soon, all those tasks that I have to perform for my boy will feel routine.  As I learn more and more about our path, and the process we will have to go through, I will feel more secure, and less alone.

So forward I go, one foot in front of the other, comforted in the fact that although we are on the edge of some very new experiences, we will soon hit our stride, and do just what needs to be done to have TJ just where he needs to be.

Just where he needs to be.


  1. Replies
    1. Thanks my's good for me to get realistic. I hadn't about this subject before. :)

  2. I have a 30-year old autistic daughter and I remember feeling the same way. I would suggest if you haven't to read a book called Life Animated by Ron Suskind. It is amazingly powerful which allows a sense of hope to filter through. The lives are children lead are different than what we planned but they can be wonderful, you just have to change your expectations. Hugs to you.

    1. I'm definitely going to get that book - thank you! So much. We have hope every day - it really does help my fear of what's coming next. Thank you - for reading, for your comment, and for hope! :)

  3. I just got my Vermont Quarterly and saw that you graduated in 92 when I did. I have four children, three of which have autism. I really can relate to your blog!

    1. Hello fellow Catamount! You have full hands (and a very full heart, I'm sure)! I'm glad you like the blog - you are a fellow warrior mom! I hope to meet you - next reunion maybe? XO LJ