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!

The Same But Different

Everything about my sons is the same but different.  They both have blonde hair, but one has my texture and the other has my husband’s.  They both walked at very early ages (8 ½ months for my older son and 7 ½ months for my younger one), but my older son skipped crawling altogether. 

And, of course, they are both autistic but their traits are a little different.  They both enjoying lining things up and spinning; although, my younger son is more particular about how things line up and my older son enjoys spinning to the point of making me dizzy.  My younger son enjoys toe walking most of the day, while my older son never really got into it.

Then there are the differences in services and therapy.  We got services through Early Start for both our sons and they were evaluated in the same exact building.  But in eight years, the building and the process have changed.  The building is home to a special needs school, an office for a different state program, and the Early Start program. 

When we went into the building 8 years ago, the program used offices belonging to the school and we sat in a huge open waiting room.  This time, we noticed the big waiting room was gone and Early Start now had their own separate evaluation rooms and waiting room.

And let’s not forget the process changes.  When we got services 8 years ago, it was Early Start evaluation, IFSP meeting, and then services begin.  Now, before services can “officially” start, the state of California has all parents submit requests to their health insurance providers to see if they will foot the bill for any of the services.  For autism services, the answer is most often going to be no and then the state will go ahead and take care of the costs. 

As a Kaiser member, I found this process to be extremely frustrating and confusing.  People at the Kaiser regional office had no idea what I was talking about and the Early Start case worker was no help.  The most confusing part was that his services actually started in the meantime and I was told by someone at the state office for Early Start that if the health insurance agrees to pay anything they would be billed for these services.  All of this so the state can try to save a buck.

Funny thing is that parents of autistic children have been trying to get a bill passed in California to require healthcare providers to cover autism services, like ABA therapy. (see http://www.autismspeaks.org/government_affairs/state_issues.php).  Seems to me that passing legislation like this would decrease the costs associated with Early Start, without sending parent on a wild goose chase for a “denial letter.”

So the process is different from 8 years ago, but so are the services provided.  ABA therapy has long been associated with helping autistic children, but it was difficult to get the service unless you private-paid or your child was on the severe end of the spectrum.  My older son did not receive ABA therapy; rather, he was provided with a speech and language small group class 3 times a week, a private speech session once a week, a private session with an OT once a week, and a in-home visit from a behaviorist once a month.  Now, I’m not saying my son did not improve, because he really did, but he was not given the same opportunities as children nowadays.  My younger son is receiving 15 hours of in-home ABA therapy a week—and this is just an evaluation period.  They will decide if he will need more therapy, less therapy, time in a center-based program, additional services, and so on.  He is already showing signs of improvement and his word count is growing everyday.

Oh gosh, what am I really saying here?  I guess that there is no such thing as a “veteran” parent.  The moment you think you have everything figured out, they go and change it on you.  We may know how to raise autistic sons, but we are also learning something new everyday.

The Road

You ever get really difficult directions to a destination?  You probably have felt nervous that you would never get there, anxious that you made a wrong turn, frustrated that it is taking so long, and angry that it is so hard to find.  That is how I feel with my oldest son. He is 10-years old and is a high-functioning autistic. 

Now, how about the second time you take that difficult route?  You probably dread navigating that confusing path, frustrated that you have to go through it all again, and angry that there was not a simpler way.  But, you probably also feel hopeful because you know you will get there eventually.  That is how I feel with my other son.  He is 2-years old and was just diagnosed as a low-functioning autistic.

The road of autism is a long and frustrating one.  With my 10-year old, we are embarking on middle school next year.  We are desperately searching for the school where his social inadequacies will not be so obvious.  With our 2-year old, we are going through California’s Early Start program and getting him speech and other therapies.

I would be lying if I didn’t admit that this road trip gives me car sickness; sometimes I just want to jump out of the vehicle and keep on running.  Yet, I’ve come to appreciate the unexpected turns and surprising twists.  I don’t even know what my life would look like without autism.  It has shaped so much of who I am as an adult and a mother.  It has challenged me in ways I didn’t even know were possible.  It is a road I don’t regret traveling down.