Friday, March 03, 2006

Sadness of the Summer Dilemma

I have no idea what Sweet M will do during the summer.

Last year she was part of an inclusion program at a local YMCA, and she has begged me not to have her return there.

The program took place mostly in a local public school that does not conduct classes in the summer for a good reason — there's no air conditioning and the rooms are oven-like. They take breaks to go to the Y's swimming pool, but the camp counselors were too young and untrained to really work well with Sweet M. (Though I will say that some of them really tried.) She wound up refusing to swim, even though she usually loves swimming, because the counselors weren't permitted (or thought they weren't permitted) to help her get in and out of her swimsuit.

The summer before last she was taking a bus to Dobb's Ferry to attend a camp for kids with special needs. She was ambivalent about that, as was I. That involved a 6:30 a.m. bus pick-up about two miles from where we live so that she could be in Dobb's Ferry by 8.

I just have no idea what we'll do with her this summer. For those of us with kids in nine-month school programs, summer plans, programs, and placements are a challenge that we start thinking about in January. So I'm already late.

Trying to catch up, I went today to listen to a talk about summer programs for ADHD kids. Well, at least that's what I thought it was. In point of fact it was a presentation about a single program, the NYU Summer Program for Kids.

I'd been warned by someone at Sweet M's school that this program has not worked well for kids from Sweet M's school. But I wasn't prepared for what I saw. I couldn't even stay through the Q & A because I thought I would probably start ranting. While I am often a fan of treatment, services. and clinicians at the NYU Child Study Center, I have to say that this presentation left me appalled.

Essentially the summer ADHD program consists of unremitting supervision and point calculation. The kids are tracked on 16 negative behaviors and 9 positive behaviors and scored continuously on detailed ledger sheets, which are later tabulated so that rewards or punishments can be handed down.

The gender breakdown was something like 48 boys and 4 girls. That would so not work for Sweet M.

But the most telling moment was when the person presenting, Dr. Karen Fleiss, shared video clips of these supposedly wonderful programs.

In one clip, the children and counselors are sitting in an echoy gymnasium doing a debriefing about some competitive sport. The counselor is talking so loudly and so quickly, and the room was so hollow and echoing, that there is little chance that M would even be able to understand any of the language. Lots of ADHD kids have auditory discrimination and language processing problems. How could this possibly be appropriate?

Dr. Fleiss introduced the second video clip as an example of an amazing art teacher at work, but what was actually included in that clip show no evidence of art making at all. Instead the teacher was barking out point counts — merits and demerits — to a group of squirming kids. Where was the art?

At another point Dr. Fleiss pointed out — with what I understood as professional pride — that sometimes the 7 minute time-out periods are too long for the little ones, but that the counselors don't make any adjustments to the time until there is a full clinical review. Gosh, I wonder how long that takes. And does anyone remember how long 7 minutes feels when you're 7 years old, sensory processing and attentional issues notwithstanding?

Beyond that, I wondered how any of the psychiatric professionals who were part of this audience at the NYU Child Study Center's Grand Rounds would feel if they were closely scrutinized from 8 a.m. until 4 p.m. on every single behavior they engage in, and then had their pay docked for failing to cooperate as "team players" or were required to sit outside their offices any time they spoke out of turn or behaved in an arrogant and self-important manner.

Even the website promoting this program notes that:
" . . . there is no research to date that has systematically studied the generalization of the improved skills once the eight week program has ended."
That does not surprise. Who could live like this?

While I'm interested in finding ways of cultivating M's strengths and increasing her social skills and frustration tolerance, this is certainly not the right place for her.

All of this left me so very sad. Sad, of course, that I haven't yet found a good place for Sweet M for the summer.

But even sadder for the kids who are put through regimens that are not far from military boot camps in their content, but which use the cool calculus of continuous point systems — instead of the physical abuse of a military school — to extract compliance.

I wept in the cab that I took home. Is there any place at all in the world for our spirited kids?



MothersVox said...

Unfortunately not . . . It's a 180 day program, then we're on our own for mid June until just after Labor Day. Thanks for your good wishes. I guess we'll find something. . .

kristina said...

Are there any social skills groups or social skills camps near you? A friend whose son is 7 and PDD-NOS/Asperger's did such a camp with Jed Baker in Pennington last summer. Her district in Bergen County is also running such a program.

Diamond said...

I'm sorry to hear of your dilemma with Sweet M, but I am so very concerned about who came up with this concentration camp type method for these other children. I am horror struck over this program!!

Anonymous said...

All children on the spectrum should be in a full day,full/year program. A good evaluator (ex. Neurologist, Neuropsych.) will always write this in their recommendation portion. I suggest getting a good evalution from a Neuro. who is very schooled in autism and the effective therapy that goes along with it and don't allow your district to deny the child this right.