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.\u00a0 He did not like to move from there.\u00a0 I was his base.\u00a0 He took a long time to get himself into the sand, and even longer to play in the waves the way he does now.<\/p>\n
It worried me, of course.\u00a0 All the other little kids were sitting on their fat, puffed-up diapers and digging, crying, yelling, laughing, pointing.\u00a0 Benj could do all of it; he just had to do it from my lap.\u00a0 I tried pushing him off, prying him loose, setting him down, showing him how to play, but generally, he preferred my cushiony self.\u00a0 Sweet Baby.\u00a0 But oh, God, was I worried.\u00a0 He wasn’t like Nat, but he wasn’t like Max.\u00a0 So what was he?<\/p>\n
He was always content to play on my lap.\u00a0 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.\u00a0 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.\u00a0 Why did he have to keep so much to himself?\u00a0 Why did he enjoy solitary play so much?\u00a0 Why was I the main playmate, for so long?\u00a0 Why was it always his idea that had to win?<\/p>\n
Of course I had him evaluated.\u00a0 Wouldn’t you, seeing that Nat was autistic, hearing all of the Early Intervention warnings\/statistics?\u00a0 I learned that he was not on the autism spectrum.\u00a0 He was “normal, but stubborn.”\u00a0 I was instructed to break into his solitude with other little kids and other games:\u00a0 to gently insert my own ideas and steer him off his internal path.\u00a0 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.\u00a0 (We are all islands in this family.\u00a0 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.<\/p>\n
That was a great thing for her to say.\u00a0 He is indeed what she said, and then some.\u00a0 He is not Nat, and he is not Max, and he is not easy.\u00a0 No diagnosis, but life comes to him kind of hard anyway.\u00a0 He’s “got”\u00a0 Life-Comes-At-Him-Hard-Ism (LCAHH)<\/p>\n
Today I was thinking about a friend whose second child was also found to be on the spectrum.\u00a0 And also another friend who fears it.\u00a0 I know of so many who did a sib study program somewhere because of one child on the spectrum.\u00a0 And so much of the time, the sibling turns out to have a diagnosis of some sort, but much more minor.\u00a0 I was thinking about Little Benj as well.<\/p>\n
I had a thought that was kind of radical for me, and please don’t let it offend you:\u00a0 what good does the diagnosis do in some of our children?\u00a0 We all reply, “Well, of course you want to know.\u00a0 You need the services.\u00a0 You need to know what you’re dealing with.”\u00a0 But do we?\u00a0 Do we need to know?\u00a0 Does hearing, “He has Asperger’s” give you relief, does it change how you parent him?\u00a0 Really?\u00a0 How?\u00a0 Weren’t you already creating structured routines, rewarding good behavior, using five-minute warnings for transitions?\u00a0 Or did it only make you sad and unsure of what this means?\u00a0 Weren’t you already worried about some stuff, like where was he going to be in five years or ten years?\u00a0 Or how would I take him to the supermarket?\u00a0 Or can he have sleepovers, if he’s on the autism spectrum?\u00a0 Relationships?\u00a0 Did the technical certainty from a doctor bring you relief, make a positive change?<\/p>\n
Probably not.<\/p>\n
Okay you need the label for the services.\u00a0 I’m not going there.\u00a0 Nat has come so far with the services he’s gotten.\u00a0 And then there’s the argument for Early Intervention, the nip-it-in-the-bud argument.\u00a0 Yes, a good one.\u00a0 But —<\/p>\n
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.\u00a0 Pay now or really pay later. But sometimes EI didn’t make a difference later on.\u00a0 And no one knows why.\u00a0 Did the kid get misdiagnosed?\u00a0 Did the schools fail him?\u00a0 Did the parent screw up? Does it matter?\u00a0 What matters is that there be supports and structures for him in Later Life so that he can live okay as an adult.\u00a0 No matter what the diagnosis, if someone is struggling, they’re struggling, and they could use a little help.\u00a0 You might have an Aspie who simply cannot be left alone.\u00a0 You may have an adult with Down Syndrome who can live independently.\u00a0 Life is full of surprises.<\/p>\n
What bothers me is when the label confirmed what you already suspected, and made you feel worse. <\/em>Made you now think your kid had a limitation that he doesn’t necessarily have.\u00a0 Changed his childhood into one with services and therapies, with assessment and appointments.\u00a0 If that’s what’s needed, okay.\u00a0 But I am here to say, don’t let the label change how you see your child.\u00a0 It’s just words.\u00a0 You already knew who he was, his difficulties.\u00a0 He is different, you know that already.\u00a0 Okay, the therapies may help some of that.\u00a0 But what you need to do the most is give your kid a childhood to the best of your ability — and his.\u00a0 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.\u00a0 Okay, that’s the disability part.\u00a0 You’ll do what you can, he’ll do what he can.<\/p>\n But you don’t know what will be.\u00a0 Benj wasn’t like Nat, and he wasn’t like Max.\u00a0 He is Ben!<\/p>\n So do you have a future, an entire life with your kid.\u00a0 And a few letters cannot change that, one way or the other.\u00a0 He’s got you, his base <\/a>on the beach.
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