Friday, September 18, 2009

Wrangling

I had a meeting with the school district this week.

Their email:
It sounds like we can offer services in the classroom at this time. If you are not able to have Q attend due to scheduling issues you have the right to not participate in special services. If you would like to do so I can send out a Written Notice and letter to explain this formally. Let me know what you decide. Thanks,
_____

My response:
Thanks, _____. I want to be clear, though, that scheduling is a tangential issue for me. While it presents certain difficulties, none of those difficulties is insurmountable. The original issues remain: First, which services will best meet Q's needs? His neurologist has indicated (and his pediatrician and I agree) that an ongoing combination of CTU and school services would be most beneficial to Q. Second, how do I keep Q as healthy as possible while maximizing his use of those services? This goes immediately to his ability to participate in learning -- as we've discussed, when he's ill his already reduced capacity to participate in daily life becomes non-existent, right down to feeding, never mind learning or therapies.

I am fairly unconcerned about Q's basic intellectual development -- his home environment is rich and varied, presenting age appropriate and older learning opportunities. However, I cannot provide for him the access to specialized equipment and personnel which is available through the ______ school district-- all of which have, again, been clearly indicated as part of Q's best case scenario by the doctors in charge of his care. I believe his IEP would reflect the same, per the school district therapists' evaluations.

Gotta go feed the boy again. Thanks again, _____.

Best,
_____

This does not remotely represent the whole long conversation, but it might, maybe, convey my frustration with the process. He's had an IEP since January. No services, but meetings here and there, and plenty of patting of my head for suggesting that he is even approaching medically fragile. He is borderline immuno-suppressed. Well. I'm assuming he is, since we don't pass a winter without steroids in the nebulizer, his first respiratory diagnosis came before he was two months old, and his functional respiratory diagnosis is Reactive Airway Disease.

I resent, yes, I resent that these meetings have morphed from an atmosphere of camaraderie to one of suspicion. Or something. They began with us all being pretty open about the things available to Q, the therapists being magnificent (they still are), and have ended up with me bawling my way through the last one, seven persons who work for the district vs. me. The PreK teacher seems fantastic. The therapists seem fantastic, one of them who met Q a year ago going so far as to gently amend the summary of Q with a few details of his personality, which she clearly finds to be delightful. The rest? I don't know. I imagine that it's much the same as in other professions, like medicine: doctors talk down to their patients because so many patients refuse to participate in their own care or literally can't develop a vocabulary that will help them to do so. It's frustrating then for a patient who understands more than your average bear to be treated like an imbecile. It's frustrating for the doctor to know things that could change that patient's life forever, only to be ignored.

I'm about to fall over on my head, so I'm going to sign off and sleep, I hope. Q is snuggled up with grandpa, so now's my chance. I've got some writing to do elsewhere and then, next up: the summary of Q's current activities (I hope).

Hope you find yourself overwhelmed by kindness, sleep-wealthy, and thrilled to be where you are. Pax.

4 comments:

therextras said...

Your experiences with the IEP team are understandably frustrating and frustratingly common. It's.not.just.you.

With all those 'good' pros you mentioned, is it possible to trust them without getting the paperwork perfect? Meaning - you seem to be falling into a common trap of repetively meeting to get the IEP satisfactory - and as you have seen, delay all services to your child.

Not just talking as a pro here - read my post on cord blood treatment, about 3 posts down from the top. Barbara

C said...

The actual IEP hasn't even come up since May, weirdly. But I'll be speaking with the PreK teacher Monday to set up the actual details of Q's time there.

I don't understand the need to meet repeatedly, having me come in for sometimes as little as ten minutes, more or less. To satisfy what, exactly? Actually *doing* something seems vastly more appropriate.

Thanks, ma'am. Off to read your post.

Katy said...

AS a formet special ed teacher, this all sounds very weird. I'm not sure what the purpose of all these meeting would be. Of course, I taught older kids, but still. . . it's odd.

Knowing what I know about the school system and SPED in particular, I have no idea whether or not Charlie will ever attend regular school. I'll have to wait and see but I'm not convinced.

And yes, it sucks when they talk to you like you're stupid and lot of them do that. I usually go into the doctor with guns blazing--I'd be willing to bet there's a note in my chart or something that reads, "difficult mother."

Anne said...

I'm a long time reader, but I don't think I've ever commented. If he has an IEP, there should be a implementation date that they should follow. Have you ever (in your spare time :) ) looked at www.wrightslaw.com? They have good information about rights and such. They should not be calling you in for meetings unless they are changing the IEP. Best wishes.