Saturday, November 17, 2007

A Postscript-ish Defense

Everyone's kinda jumping on the poor SLP for saying N's not on the spectrum. So I feel like I should stand up for her--and for me--a bit. What she was saying, in essence, was that he qualifies for and deserves major services, period. For a variety of issues.

She did say, as several of you did, that yes, if I keep looking and asking and pushing, I might get someone to give him a PDD label. But she also implied (and gosh I wish I had a tape recorder so I could put it the very gentle and diplomatic way she did) that anyone who did give him such a label would be doing it because they were either not very good at their job or would be turning a blind eye to the truth in order to help me get what I want. The truth is that, yes, on paper, he's spectrummy, what with the social issues (though they are becoming more and more invisible outside the classroom), the communication issues, the sensory issues. But in person, he simply is not. He's something so many senses of the word. (She mentioned another, possibly more fitting, umbrella label that of course went in and out of my head...something along the lines of Multisomething Developmental Delays maybe?)

[I'm putting aside the 'it's a spectrum' argument for now, because, yes, semantically, everyone is on the spectrum. But 'everyone' doesn't qualify for a label, and 'everyone' doesn't qualify for services. So there's clearly a line over which you're considered to really be 'on' the spectrum rather than off it. Em is way way way off it. N is too, just less so.]

I really do agree with her. As, to be honest, has every single professional who has ever looked at him. I have a folder full of reports from Pediatricians and Developmental Pediatricians and Occupational Therapists and Speech Therapists and Special Education Teams...and on every single one, it says that there is this concern and that concern and the other concern, but they also all say in one way or another that he doesn't meet the criteria. Not even close. This isn't about getting a second opinion. I've had, conservatively, five opinions--and, in reality, closer to eight or ten. And they all say no.

That sounds negative, but she wasn't being negative. She thinks that I have a very strong case to get him an IEP and accommodations WITHOUT a spectrum diagnosis, and she was almost flat-out begging me to go that route. She warned that I would likely need an advocate to help me down the road (which, thanks to my buddy Valle's constant reiteration of the same refrain will be easy to do, since I have a great, huge list of people to contact when the time comes), because she thinks they may balk at it, but also because she thinks we may end up having to ask them to pay for more appropriate speech therapy than they can provide, or for private OT, etc. She also thinks there's a real case to be made for him needing an at-least-part-time one-on-one aide to help him regulate in class.

But before we go advocates, etc...she said she thinks I should start by going in with the simple and straightforward attitude that it is illegal for them to refuse to help him if he qualifies for help--regardless of his label or lack thereof. He has problems that are interfering with his ability to learn...period. Doesn't matter what he's called. He need help, he deserves help, they need to help. FAPE, baby!

And that is something I can fight for without feeling at all like I'm fudging. We'll see how it goes.


Tamar said...

I think you're thinking of multisystem developmental disorder. The term was coined by Stanley Greenspan for exactly this reason. The terms autism, autism spectrum, PDD, Asperger's, this thicket of labels, don't -- and can't -- fit any child exactly. Even D does and doesn't fit, y'know? Especially now, with an AS dx. He's no little professor, that's for sure. And he has more empathy than many boys his age. But he still struggles w/ communication, social, and (some) sensory issues, so nobody's trying to take that diagnosis away from him.

Anyway, the MDD tag is saying a child has a set of underlying deficits that are affecting the way he/she interacts with the world and that need to be addressed. Not trying to fit him into this box or that box. Much saner. As you can see, the box definitions are squiggly at best.

Interesting to me that the specialist used it. It's not (yet?) part of the general parlance.

You should be able to get N an OHI (other health impaired) label for district (and insurance) purposes. I've known other kids with that label. It's almost as good, I think. Or can be, depending on the district.

I'm sorry if it seemed like we were ganging up on you.

TC said...

YES! Multisystem Developmental Disorder. That's what she called it. (Me and my medical background kept wanting to think she'd said multi*organ* developmental disorder, which makes no sense! ;-)) Thanks for interpreting for me.

And I didn't think anyone was ganging up on me. I just realized I hadn't quite made her point clear.

Finally, I'm not surprised--though quite pleased--to hear that she's using specialty terms. She (and her practice) are Very Well Respected in this area, and she came across much more like a developmental ped than...well, than the dev ped we saw two years ago!

Ambre said...

MSDD is just Greenspan's way of broadening the spectrum, but all autism experts have already done so. That's what I was trying to say- that if you're looking at DSM criteria, you're looking at a narrower definition than the current state-of-the-art in autism diagnosis is looking at.

I'm gonna guess that 75% of people who end up with a PDD-NOS diagnosis have had multiple professionals tell them their child was not on the spectrum- because *they were not considering the spectrum,* They were looing for Autism or AS, period. That was what I was trying to say.

po said...

I understand what you are saying, that you are trying to navigate in maddeningly grey areas, and have been all along. It's fantastic that you found a Well Respected Professional who understands that those grey areas exist, and will give you a report to back that up. I was one of the ones pushing for a "definitive" dx, but then, I have a kid with textbook Asperger's, so that's easy for me to say.

Hugs and encouragement as you enter the next phase!

Valle said...

So glad about the assessment, etc. And I know the feeling about worrying about the person at school being actually capable of doing the kind of instruction/therapy, etc your kid needs.

That's the round-two of the battle!

But remember, they have to provide N. with the services he *needs*, not the services they happen to have available in the school. So if their SLP isn't trained to do it, insist they use someone else. And if they insist she can do it, but you still have your doubts, tell them you want to meet again in 6 weeks to guage his progress. If you haven't seen *any* progress by then, something is wrong.

I did this with my son w/dyslexia, and it turned out he had made progress during that time, so I conceded, and on he went.

So sometimes they do do the right thing :-)

Maddy said...

It's always so complicated, never a one side fits all. Wishing you all the best to find your way through the maze.
Best wishes

Green said...

Hi. Obviously I've never met your son. But I come from a family that has a lot of quirky issues and a background in special education and am wondering if I read right that you said you want to tweak his diet? If so, I am nominating the Feingold Diet. If you google it, you'll see a lot of connections between it and ADD & ADHD, but neither my brother nor I were diagnosed with those and we were both on that diet for years. I kind of think the entire world should be on this diet, but would be happy to go into detail about it with you - I know they charge money now for their info these days.

From the conversations you post, N is clearly smart. Not Rain Man style smart, but if you will, averagely above-average, you know?

I disagree with the chicken/egg and thus having to fix the root so the branches will follow theory. Treat each issue as if they're the root - that's my opinion.

I'm glad you got someone who sees the problems with N that you see - that must be so validating to have someone agree that what you see exists.

kristen said...

It can be so overwhelming, can't it? N is lucky to have a mom who is fighting so hard to get him what he needs. Good luck with the next round!