Susan's Blog

Friday, May 21, 2010

All His Base Are Belong To Him

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.

Little Compton, Rhode Island 2001


I blew off the evlaulations for a long time. But then my sweet girl kept asking … “Mom, why am I so weird?” “Mom, why doesn’t anyone sit with me on the bus?” Her self-esteem plumetted and she was too smart to accept the answers I gave her … She knew in her heart there was more to it.

So, yes, part of it was so I would know. (I just have no idea what’s normal!) And part of it was so she could know. (Haven’t told her yet..) And part of it was so teachers and professionals would know and be able to understand her a little better.. If I felt like I could accomplish that without disclosing the label, I would. Maybe I can … I’m not sure. That’s why I hesitate to tell her. She is the same brilliant, quirky, musical, annoying kid she’s always been. Very, very true. Nothing to grieve there. But yeah, at this point, I think the label is necessary.

— added by autismville on Friday, May 21, 2010 at 4:59 pm

As long as it helps! I’m glad you’ve found a tool and strategy, then.

— added by Susan Senator on Friday, May 21, 2010 at 5:07 pm

The strategy is coming … I still feel very much like I’m in that whole figuring-it-out stage. But the good thing is I recognize the sensation and I know there’s no hurry .. We can take it a day at a time.

— added by autismville on Friday, May 21, 2010 at 5:31 pm

Yes! I’ve often questioned what good a label really is, particularly for those who are right on the cusp such that their scores in some areas are “too high” to qualify them for services. In many cases, children can “live down” to expectations (as well as living “up” to higher standards,) so teachers, other parents, and medical professionals can expect so little of someone who has an alphabet soup after his or her name that their progress can be hindered.

In many cases, I wish people would just relax and let kids mature on their own timetable instead of picking apart every deviation from the “norm” so the kids feel inadequate and the parents are shunned for being “poor disciplinarians.” Of course anything that requires immediate attention can be addressed, but not necessarily under the huge umbrella of a lifelong “disability.”

In my son’s case, he would regress after every OT appointment. The therapist coddled him, so he started acting like someone who needed to be coddled. She frowned on our idea to let him go to a social skills camp (that also included sports, art and other fine/gross motor activities) but I listened to my heart. The following year, I had an “aha!” moment as I tried to decide between that same social skills camp (which was all day) and being on a club level soccer team (whose mandatory practice sessions would conflict with the camp.) I realized that the OT and social skills classes were an attempt to prepare him for “real life” — and indeed, club soccer was “real life.” On the soccer field, he was just like his peers – and since nobody on the team knew of his diagnosis, he was simply “one of the guys.” (And yet on the flip side, his strong reluctance to dress in costume during a Halloween tournament and other such reactions were definitely *not* like the other teammates.)

I’ve already hijacked your comments enough, but suffice to say that I’ve definitely thought about the benefit/risk/cost of therapy and labels versus “just living.”

— added by Karianna on Friday, May 21, 2010 at 8:58 pm

This essay took my breath away. Should be published, really your compiled blog is your next book and then some. As always thanks for sharing.

— added by Linda on Friday, May 21, 2010 at 9:02 pm

Excellent post Susan! I loved reading this! It is so very true. Nick had his little oddities at a very young age and he probably could have been diagnosed earlier than he was. But to us, he was just Nick. In a lot of ways he still is just Nick. I look at all those parents who are crammng their kids’ schedules with all different therapies, I mean these kids are even doing therapies on weekends. I wondered if we were doing the right thing by not having a gazillion doctors appointments, and just schlepping him around with his older brother to soccer games, birthday parties, etc. Now I realize that could very well be the best thing for him. He is part of a family first, autistic second. I hate that there was always this pressure of some “magic” age in which EI was to be done(the first three years are crucial, after that then some magic window seems to slam in your face). There was so much pressure.
Now, we also take it day by day. Nick is who he is supposed to be. He was always this way, it just took two years to put a name to it. We have therapies, but not overly so. He is progressing, but he is progressing on his own time. And we are fine with that. We are figuring out how he learns and adapting our strategies. Since we have been focusing more on what he likes and appeals to his senses/needs he has done nothing but blossom. They are still children(or adults) first and foremost. Labels come after that. I know over the past four years, we have grown in our appreciation for Nick just as he is.

— added by amy on Saturday, May 22, 2010 at 1:21 am

Hi Sue,
This blog reminded me of one of my favorite Lucy quotes from the old Peanuts specials

Lucy to Charlie Brown: “Well as they say on TV, the mere fact that you realize you need help indicates that you are not too far gone. I think we better pin point your fears. If we can find out what you’re afraid of, we can label it.”

You can listen to the clip here.–Not-too-far-gonePeanuts-A-Charlie-Brown-Christmas-Lucy-Van-Pelt-

It reminds me that our desire to label every perceived difference has been around a long time. Maybe it’s not the label we’re after, but the reassurance that our kids are going to be okay.


— added by stacey on Saturday, May 22, 2010 at 9:28 pm

The OT coordinator told me that the only thing a label was for was services. That your family was your family and will always be so. I firmly believe that.

I do know that with the eldest I kept getting told “some kids talk late”… Yes, but it gave us a starting point, a run at the inflexible system that I truly believe was helpful with a child that was able to “cope” at times, instead of hitting my head against it hard with the one that needed help “THEN, and NOW”… b/c I know the rules of the game.

Don’t get me started on EI and the guilt they toss at you if you wander away from it. We learn, we grow, the world doesn’t come to an end, our brains aren’t rigid after the age of 5.

I could undx my eldest tomorrow… he would be “fine”… but why would I. That dx get’s him a fusion, OT, help with social skills, help with the anxiety and claustrophobia. I don’t tell him he has “autism”, he mentioned it about 6mths or so ago… someone at school must have said something and I looked at him and said “your brother has autism, you just need a little extra help and you’re just fine”. That was the end of it. He’s much more worried about “what will happen to R if he never learns to talk”… He does, some – mands and daily now we have some joint attention in short spurts – He does read though orally with minimal prompting.

We don’t discuss autism in our house. Some would say we should… Why?? Eldest is doing fine… Little boy… he is, who he is… Yes, I know he’s “different” – he’s currently, squeaking at his DS, and Fri we officially signed him into a slow learners dev class for Sept (been working on that since Xmas), his parents are toilet trained moreso than he is – but we live life “normally” and that’s how it should be.

Having a time explaining what I mean….

— added by farmwifetwo on Sunday, May 23, 2010 at 8:04 pm

We have one who was diagnosed with autism shortly after the age of 2.

We have twins that came after him. One was in the hospital for a week at 15 months, and as a follow-up thing, they notified ECI that an evaluation might be in order. Well, when they evaluated him, he didn’t qualify for services, but his twin sister did, on a speech delay diagnosis. Eventually, his speech development slipped to the point of qualifying for ECI, as well. What I got out of the ECI was assurances that I was a decent parent and my kids were great, just a little speech-delayed.

Evaluation for services through the school district before their 3rd birthday had both of them qualifying under autism criteria. They’re now in full-day school, she’s mainstreamed in kindergarten with support, he’s in a separate class (there are 2 such classes at their school, and I have one redhaired boy in each), and the general strategy with each kid seems to be, “How do we help this kid succeed?”

The autism here just is. The red hair here just is. (As might be expected, with both parents having red hair.) These kids are how they are, and they’re getting services to help them learn. And getting sunscreened if there are outdoor activities such as Field Day.

— added by Julia on Monday, May 24, 2010 at 11:29 pm

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