Susan Senator

When Benj was a very little guy, he used to sit on my lap at the beach, holding on tight to some little palm-sized truck or being.  He did not like to move from there.  I was his base.  He took a long time to get himself into the sand, and even longer to play in the waves the way he does now.

It worried me, of course.  All the other little kids were sitting on their fat, puffed-up diapers and digging, crying, yelling, laughing, pointing.  Benj could do all of it; he just had to do it from my lap.  I tried pushing him off, prying him loose, setting him down, showing him how to play, but generally, he preferred my cushiony self.  Sweet Baby.  But oh, God, was I worried.  He wasn’t like Nat, but he wasn’t like Max.  So what was he?

He was always content to play on my lap.  He was always content to sit in the big arm chair with kitten Beanies or drawing tiny palm-sized pirate ships over and over and over again. Sometimes he’d ask me to play with the kitten Beanies with him, but he always had such a firm idea of what the game was that it was tough to get it right.  He had such plans, so much going on in that adorable head, such an intense stare, thumb plugged into his mouth as if to help keep it all to himself.  Why did he have to keep so much to himself?  Why did he enjoy solitary play so much?  Why was I the main playmate, for so long?  Why was it always his idea that had to win?

Of course I had him evaluated.  Wouldn’t you, seeing that Nat was autistic, hearing all of the Early Intervention warnings/statistics?  I learned that he was not on the autism spectrum.  He was “normal, but stubborn.”  I was instructed to break into his solitude with other little kids and other games:  to gently insert my own ideas and steer him off his internal path.  But the psychologist also pointed out that she knew our family, so she knew the chances of my actively changing my behavior, into this play therapist mommy, would probably not be stellar.  (We are all islands in this family.  We all have our laptops open at all times, and Ben’s desktop is always on with a project of his.) Dr. W knew us very well and she smiled, saying it would all probably be okay.

That was a great thing for her to say.  He is indeed what she said, and then some.  He is not Nat, and he is not Max, and he is not easy.  No diagnosis, but life comes to him kind of hard anyway.  He’s “got”  Life-Comes-At-Him-Hard-Ism (LCAHH)

Today I was thinking about a friend whose second child was also found to be on the spectrum.  And also another friend who fears it.  I know of so many who did a sib study program somewhere because of one child on the spectrum.  And so much of the time, the sibling turns out to have a diagnosis of some sort, but much more minor.  I was thinking about Little Benj as well.

I had a thought that was kind of radical for me, and please don’t let it offend you:  what good does the diagnosis do in some of our children?  We all reply, “Well, of course you want to know.  You need the services.  You need to know what you’re dealing with.”  But do we?  Do we need to know?  Does hearing, “He has Asperger’s” give you relief, does it change how you parent him?  Really?  How?  Weren’t you already creating structured routines, rewarding good behavior, using five-minute warnings for transitions?  Or did it only make you sad and unsure of what this means?  Weren’t you already worried about some stuff, like where was he going to be in five years or ten years?  Or how would I take him to the supermarket?  Or can he have sleepovers, if he’s on the autism spectrum?  Relationships?  Did the technical certainty from a doctor bring you relief, make a positive change?

Probably not.

Okay you need the label for the services.  I’m not going there.  Nat has come so far with the services he’s gotten.  And then there’s the argument for Early Intervention, the nip-it-in-the-bud argument.  Yes, a good one.  But —

What bothers me is that the worship of EI has gotten to be so fervent that people believe it to be fundamental in Making a Difference Later On.  Pay now or really pay later. But sometimes EI didn’t make a difference later on.  And no one knows why.  Did the kid get misdiagnosed?  Did the schools fail him?  Did the parent screw up? Does it matter?  What matters is that there be supports and structures for him in Later Life so that he can live okay as an adult.  No matter what the diagnosis, if someone is struggling, they’re struggling, and they could use a little help.  You might have an Aspie who simply cannot be left alone.  You may have an adult with Down Syndrome who can live independently.  Life is full of surprises.

What bothers me is when the label confirmed what you already suspected, and made you feel worse. Made you now think your kid had a limitation that he doesn’t necessarily have.  Changed his childhood into one with services and therapies, with assessment and appointments.  If that’s what’s needed, okay.  But I am here to say, don’t let the label change how you see your child.  It’s just words.  You already knew who he was, his difficulties.  He is different, you know that already.  Okay, the therapies may help some of that.  But what you need to do the most is give your kid a childhood to the best of your ability — and his.  You have already been adjusting to the way that he plays (or doesn’t), the odd language (or lack thereof), the eccentric behavior, all the difficulties.  Okay, that’s the disability part.  You’ll do what you can, he’ll do what he can.

But you don’t know what will be.  Benj wasn’t like Nat, and he wasn’t like Max.  He is Ben!

So do you have a future, an entire life with your kid.  And a few letters cannot change that, one way or the other.  He’s got you, his base on the beach.