Wednesday, March 17, 2010

On Good Days and Square Pegs

Oh these days are good.

So stinking GOOOD!

J-man is really starting to blossom. He is working so hard to talk, imitating and mimicking sounds and words... or at least trying. Clearly (or not so clearly) his words don't usually sound like words. But oh, the effort! He has even started to try singing... usually to well-known songs, but still! It is a little startling to suddenly hear him trying to sign along, pieces of words in song. I have come to believe that his motor planning is a big issue. He HATES to "perform on command", even when it is words he clearly knows. But ahhh... the sweet sound of half formed words warms my heart.

He also has become more engaged in so many subtle ways. It is hard to describe, but it can be as simple as taking my hand just to hold it, or rubbing noses with me just for fun. These small pieces of him coming out and saying "hi" might seem silly, or unimportant, but for us they are huge.

A few weeks ago I attended a parent advocacy training seminar. It was two days, 8 hours a day, in hard chairs (oiy, my arse!) and covered a large number of general topics in special education law. It was interesting, if a little long, and I feel charged up to help other parents be able to represent their kids. Go Team!

Anyhow, while at this seminar I had a few interactions with mothers there that put me off-kilter. Now, don't get me wrong... they were all very lovely and very supportive. But I found myself on the receiving end of some 'unwanted' advice and some questionable observations that set me back a bit. Largely these 'insights' surrounded my apparent trip down the river of Denial regarding the J-man's diagnosis (or lack thereof) and how denying my boy the label of autism is somehow crippling him.... preventing him from getting the "true help" he really needs. I was counseled to "not be afraid" of the diagnosis and that I needed to rethink our position.

It took me several days to process these interactions. After some thought, I was pissed. I find nothing more galling than having someone judge my child based on nothing but their own biases. These people had never met my son. They certainly didn't understand why we have are doubts about where he fits. I am not entirely sure they understand the subtle differences that we are looking at when we look at him. And yet, somehow I am failing him?

And how am I failing him? Because I am not chelating him, or spending our savings on scads of special supplements, or on the GFCF diet (oh we tried that once... no difference)? Because we aren't in an ABA program? Are those the doors that would open? Because the way I see it, there is no evidence those costly, massively time consuming (and sometimes highly risky) therapies would work for him. For others, yes maybe. But what IS working is what we are doing right now... a highly supportive home and daycare environment, highly specialized speech therapy for apraxia, and us: loving him and responding to him. He is leading the way, and we are following.
Is it really that crazy to think something as simple as that is working? That voodoo isn't actually needed?

It is true, embracing "that label" can open doors, and for the kiddos that need those doors open it is a gift and a Godsend. However, "that label" comes with a price. Suddenly, the world views him through that lens. The school decides where "he fits". Administrators draw broad generalizations about what is "appropriate programing" for him. Individual teachers may decide what their expectations should be (or should NOT be) and woe to us to try and change that. So we are well aware that someday we may need to go down that road. Then it may work, it may fit. But right now, really, truly, we-aint-lying, it just doesn't fit. It doesn't work.

And so we are Square Pegs. We don't fit neatly into anyone's category. We don't embrace "alternative" therapies out of hand. I actually read empirical research. The Peer Reviewed kind. We are not interested in pushing a label, defining J-man at age three. And thus, we are cast out of many clubs.... the ultimate rebels. Is there no village for us?

But then, J-man has good days. He has GREAT days. So I will take it, and love it, and accept that sometimes you just have to blaze your own trails.

And nod and smile at unwanted (yet well-meaning) advice.


Betsey said...

Good for you! My son will be 3 in June and ECI was convinced he fell on the spectrum. I thought they were to quick to label. What do ya know. as he has gotten a little older a lot of the "red flags" have diminished. Yes, he still has a significant speech delay and some other issues, but he is making progress. I think it is appropriate to just give some of these kids time and see how the therapies work before slapping a label on them.

Beth's Brood said...

We've had a label issue with our daughter, as well. Schools notoriously push specific labels because they bring in more federal dollars -- it's a decision based more on their bottom line than your child.

On the other hand, it's my understanding that an Autism diagnosis can open one amazing door: TEFRA. If you're not able to get the ALL services your son needs (PT, OT, speech, social skills groups, etc.) through your private insurance, this may be something to consider.

That being said, here's some more unsolicited advice from a fellow Mom of a square peg: get a full-scale psycho/developmental evaluation from a private medical clinic and keep the results close at hand. Our eval was crucial in getting the IEP Team to back off the label and move forward with appropriate services. Good luck!!

Will's Mom said...

I call Will my little Square Peg all the time! And I tell everyone those corners he has make him who he is not what he is. Good for you for sticking with him and staying strong.

Kj said...

this was so brilliant! I love the way you expressed yourself here.

Welcome to square Peg world. A happy place to be ;-)

over from NLT

ps read the article in the files on what Camarata has to say about Apraxia. Think you'll find some comfort there.

Anonymous said...

You have every right to be pissed. I am pissed, too, just reading this. LISTEN TO YOUR GUT! If your son does not have Austim, ABA is the exactly the WRONG therapy for him!

Therapy is good if it is the RIGHT therapy. People think, "Try it all. It can't hurt!" The fact is, yes, it can. It can.


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