Wednesday, October 15, 2008

The Meeting

Monday at 2:30 was the IEP meeting for Scott. Individualized Education Program. Present were the school psychologist, the learning specialist, speech therapist, briefly an occupational therapist, Billy, Gary, and myself.

There will be another meeting, to actually come up with goals and a plan for implementation. For the life of me I can't think of how we filled an hour and a half, but we were talking, listening, discussing the entire duration.

I'd received calls ahead of time from the school psychologist requesting that I bring a letter of diagnosis of adhd from the pediatrician. We actually connected on the phone voice-to-voice on Thursday last week. I'd been feeling a bit exasperated because I had some errands to do and Scott had been waiting pretty patiently (teacher planning day, out of school) to go and buy a reward for having behaved well in class that week. (Yeah, I've stooped to bribery. Short term goals and fairly immediate rewards seem to be most effective with him.) I was exasperated because I'd just finished listening to a message from her that went on and on and on. Clearly a long-winded sort that takes a long time to articulate a thought. The gist of the call was the request to bring the letter of diagnosis.

I had one question that I thought could be answered succinctly. Do I have to have the letter physically in my hand on Monday, or can it be in process, in the mail? If I had to have it in hand, this was going to be one of the stops on the errand run, the doctor's office. Friday I was going to the coast for my annual book retreat to choose our next year's reading list, so if the letter was mandatory then Thursday was the only day I could get it.

So that made it worth tracking her down. While on the phone at the Trillium school office with a student worker I concluded that I didn't want the letter faxed to that office. It's a good idea to give students the work experience, but I just didn't have faith that the letter would end up where it was supposed to be. It took a bit of prying to find out which school the psychologist was at that particular day but I finally got a phone number.

She seemed surprised that I'd found her. She couldn't talk long, she said, because she was supposed to be in a classroom doing an observation of an autistic student. She then proceeded to launch into an incredibly roundabout way of saying the letter had to be in hand. My question was answered long before she was finished and I was trying to be as crisp as possible. As we were about to hang up I said that I hoped there would be a lot of tissues at the meeting.

Perhaps that's what opened the way for what came next, which made my (impatient) patience with her worthwhile. She said, "I want you to know that we have six of those meetings scheduled at the school that day, and we intentionally scheduled his for last so that we'd have a full amount of time, and more if necessary to really talk about him."

She told me that as a child she herself had been 'tied to my chair' with a length of jump-rope, she was so hyperactive. I gasped and she said she was nearly 50 and it was a less enlightened time. I told her I remembered that time too. She had specialized in adhd in her career as a psychologist, and wanted to tell me her story as a means of encouragement about Scott's prospects. I told her I appreciated that she would have empathy for him and she said, "Oh! He's an adorable kid."

So that was very kind.

I spent all day Monday preparing for the meeting. I'd had a sort of plan to cry all day so there wouldn't be anything left for the meeting and I could conduct myself with some dignity, but it turns out there was no need. I've crossed a line somewhere from dread of what is to acceptance of what is. I realized the meeting wasn't so much about them giving me bad news about my child; it was about figuring out a plan to get him what he needs.

So, the short story is:

1) We had a meeting
2) It was non-adversarial, I felt solidly that these people were on Scott's side and in agreement that the school system was not serving his needs.
3) With diagnostic letter in hand, supported by various tests and evaluations more services were going to be requested and probably secured.
4) We would meet again in 2 weeks to discuss a plan for implementation
5) Resources are very limited. Welcome to the struggle millions of parents before me have engaged and engage now.

That's the condensed version. The learning specialist asked if we planned to try medication. I said that I wanted to see how he did with the special services first. She then told us that at best she was going to be able to serve him 60 minutes per week. To people who have been-there-done-that maybe that's a huge amount of service, but to me roughly 15 minutes a day in a 7 hour day seems shockingly inadequate. I think she was telling us this to illustrate the impact we could expect from special ed: kind of like trying to turn an ocean cruiser by pushing against it with a canoe and a paddle. The reality of this didn't hit me until yesterday, after the meeting.

I think she may have taken some personal risk in bringing up medications and with as clear a tilt as she did. She said, "I'm not advocating for medications. I'm advocating for him. He should be enjoying school. He should be at the top of his class, he's so smart. He is so consumed with being tortured by his adhd he just can't take in what he needs to engage him."


I'd independently come to a notion that he is not getting the bigger picture, the underlying theme of school. In the same way he didn't get the underlying theme of baseball, was just being hit in the face over and over, neither does he comprehend there's a kind of grand design of school. Most of the other children absorb that by osmosis, that they are participating in something. And it has an underlying structure and meaning for them where they can begin to take satisfaction in mastery within that structure. Scott does not have this. So his behavior is at odds with the other children and with the classroom. In addition he has a serious communication disorder which keeps him from understanding what people are telling him. It really must be torture for him to be at school. It holds none of that secondary pleasure for him. It's an exercise in will power to keep himself reined in.

In a one-on-one setting he does quite well. It seems the chances for getting that are microscopic in the public school system. (Oh, what $10 billion per month going to Iraq could do...) Homeschooling is, and always will be an option. I don't think I am the best teacher for him, and to afford a tutor I would probably have to work full time. And since I'm the primary caregiver, when would I work, and/or who would take care of Scott while I do it? So if I keep him home he's stuck with me as teacher.

I'm beginning to grasp that he may be more profoundly affected than I'd realized. I would not withhold insulin from a child with diabetes. If his well-being is dependent on replacing some chemicals that are missing in his nervous system, then it's somewhat urgent to start soon, before he's entrenched in a negative posture toward school. And set in maladaptive behaviors.

More to think about. Waiting for a call from his pediatrician.

Sigh. My poor little boy.


Lori said...

Sending you an email.

Abiding with you.

Mrs. Spit said...

Courage is not about wandering around and saying "I hope everything is ok". Courage is when an expert tells you that everything is not alright.

And as a mum, you take a deep breath in, and you take your frailties and your fears and your personal bias and your worries and concerns and hang ups, and you toss them away and ask what is best for your boy. When you give up on hopes and dreams and maybes, and accept what is, and try your darndest to make the best out of what is.

And you did that today, with grace and care and concern.

I'm in awe.

Aunt Becky said...

As a fellow parent of a child with a disability, sometimes acting in their best interest is not the stuff that feels most comfortable. I know that you know that, but sometimes it helps to hear.

If you need someone to talk with, I'm certainly around. And I've been dealing with this sort of thing (Ben is autistic) for ages.

I wish you peace and love.

Mary P Jones (MPJ) said...

Wow. I tend to wind up in tears after even the best of IEP meetings because the focus is generally on what my son can't do, rather than what he can. And it always seems so huge and impossible to get him to where everyone else is in relation to school.

At this point, I try to see him for who he is and do the next right thing for him as an individual. Oh, and I send my husband to IEP meetings instead of me! ;)

excavator said...

Your kindness gives me courage.

Your words really are very comforting. I've been paused here for a while just...abiding with them, as you have with me.

In gratitude,

Anonymous said...

There's a good book written by a doctor in Vancouver Gabor Maté about ADHD. It's called "Scattered Minds" I think.

excavator said...

Hiya, Deb! Thanks for writing. It's kind of a funny full-circle: I think I recommended "Scattered" (that's the title in the USA--in Canada it's "Scattered Minds")to you sometime earlier this year. Hey, I'm sorry I haven't been by your site lately. Guess that goes for everyone here. I've been overwhelmed and taking a break. While my reader piles up. My Inner Disciplinarian and I are going to have to have a talk: I know my Inner Disciplinarian is going to want me to read Each. And. Every. Page.


excavator said...

Oh, Deb, you're right. "Scattered (Minds)" is a pleasure to read in its own right--he writes wonderfully. And the compassion and just plain good sense he brings to the subject are inspiring.