What I Thought I Knew

I really thought I had a handle on autism 3 years ago.  TJ was doing well in school and his social skills were progressing.  Everything seemed so manageable, that we decided, “Hey, let’s throw another kid into the mix!”  And we did.  We had TL.

Don’t get me wrong, I love TL and never regret the decision to have him.  But, I would be lying if I didn’t admit that things got so much more complicated from the moment he was born.  TJ reacted so badly to TL’s newborn cries.  It was such a sensory overload for him.  Then TJ had to learn how to play with a younger sibling.  Months of frustration ensued!  Finally, as things started to settle down for TJ, TL exhibited concerning behaviors.  We didn’t quite put the pieces together at that point, but looking back I can see the red flags. 

So how are things now?  Well, I am struggling with the day-to-day of TL’s ABA therapy and the long road that goes with it.  And then there is that fact that TJ has had trouble at school twice in the last month or so, which is completely out of the ordinary.  Because most of his trouble is due to communication and social issues, the fallout involves hours of talks with the teacher, my husband, and TJ.

Really, I don’t have a handle on this.  I don’t think I ever did or that I ever will.  How can you?  Autism is really the gift that keeps on giving.  There are always new challenges, like TJ struggling to understand what “appropriate” language is.  Then I remind myself that there are also new joys.  Like when TL spontaneously had pretend play the other night!  Truly, a big milestone that warranted lots of praise.

But, honestly, I often find myself crumbled on the floor—back to where I started 8 years ago.  I thought I had gotten past that.  I thought I had been broken from autism and that God lifted me up.  Why am I here again?  Why do I have to watch this pain flow through my family again?  Why…just…why?

I don’t know why and probably will never know why.  What I thought I knew went out the window a while back.  So, I do the only thing that makes sense—I turn to God.  While I’m on that floor, I crawl to Him and I just hold on tight to Him.  I know that His plans for us are so much more than what I could ever imagine.   I just got to learn to leave the “knowing” to Him.

Those Painful Mirror Moments

It’s always hard to look into the mirror and be honest with yourself.  Yes, that is a wrinkle.  No, you don’t look the same as you did in high school.  But the hardest mirror to look at is when someone is behaving the way you do (or did).  Maybe you see another mother yelling at her kids the way you do or a wife nagging her husband sounds just like you.  It’s a little hard to swallow those “mirror” moments.  Well, my oldest son is having those moments a lot now. 

The fact that my sons are 8 years apart makes things very interesting.  TJ has learned to cope with a lot of his autistic traits, to a point that they are barely noticeable to an untrained eye.  When he needs stimulation (or sensing, as we call it) he will ask for a time to roll on the ground or spin.  These have become less and less frequent.  When he gets the urge to line things up, he organizes papers or books. 

My younger son, TL, is not so aware of his needs and will spin or line up when the feeling strikes, much like most toddler urges.  TJ watches TL and gets very concerned and worried.  He will ask me why he spins or why he doesn’t like to be touched on the shoulder.  He will ask why TL doesn’t like songs or will throw things when no one understands what he is communicating.  Those are tough questions for any child to ask and the answers are not always clear cut. 

The mirror moments come when TJ learns (or is reminded) that he did something similar.  First, I see a look of relief that his brother is not some alien born out of a pod.  Then, he gets a look of realization as he processes the fact that he too at one time would scream at certain songs.  TJ has to watch autism from the outside and I can tell he is struggling with it. 

But, just like I can’t take his autism away, I can’t take away what he sees his brother do.  TJ still has autism, but he also has a brother with autism that looks up to him.  They will have a bond that neither I nor their father could ever share with them.  I look at as part of his journey—a journey to accept himself (and his brother).

The Ohhh…

I always love when I get the “ohhh…”  It is the reaction that a lot people involuntarily give when they find out your child (or children) are autistic.  Sometimes it might be at a restaurant when my 2-year old is upset that the sugar packets don’t line up perfectly.  He throws a tantrum and a well-meaning (aren’t they always) stranger offers some advice on tantrums or tries to distract him.  I bite my tongue on what I want to say (some version of “Butt the heck out of this, sit back down, and leave us alone.)  Instead I blurt out, “He’s autistic.”  There comes the “ohhh…”  They then smile politely and walk away.

I have even gotten the “ohhh…” from the therapists that come to help TL (my youngest).  They would ask about TL and our family.  I would give some background and then drop on them that my older son is also autistic (“ohhh…”) and that my husband’s brother is also autistic (double “ohhh…”).

Of course, I have been open about my boys being autistic for a long time.  I’ll admit it was hard sharing the truth first few years with TJ (my oldest).  It took a little while to accept things and get settled with admitting it to ourselves.  After awhile, I realized that I had nothing to hide.  Hiding his diagnosis meant I was ashamed and I definitely was not.  When TJ started getting therapy at 22 months, he could not talk, was violent, could not smile, and could not stand other people.  Anyone who knows him now, knows he is nothing like that anymore.  He is a bright 5th grader who has given a lecturer on the history of LEGOS at a GATE conference at U.C. Santa Cruz.  He has friends.  He might be a little quirky, but he looks pretty “normal.”  He is nothing to be ashamed of.

Neither is TL.  He may throw tantrums in supermarkets (today) or restaurants (yesterday) or at home (most likely tomorrow), but he is progressing.  He is adding words to his vocabulary and learning the words for his body parts.  Ashamed?  No way.

To me, autism is a part of what makes them who they are.  Without it, they would be whole other people…strangers even.  I don’t brag that they are autistic, but I don’t hide it either.  I have found that so many misunderstanding can be cleared up by just admitting to someone that your child is autistic.  Teachers/coaches/childcare providers who thought your child was just misbehaving or not paying attention will have a better understanding of who your child is and what they need.

But baring your soul about your child being autistic is not for everyone.  You may not be ready yet.  You could still be in denial.  You might believe that telling everyone will make your child look different to people.  These are all valid positions.  But if you do choose to tell someone, just know that getting the “ohhh…” is not the end of the world.  At the very least, it gets the annoying, well-intentioned stranger out of your face!