Thursday, May 11, 2006

What Hurts?

Near the end of a spectacular school year in which she moved from reading not at all to reading at a first grade level; from having no friends, to being among the most popular girls in her class; from simple arithmetic to two column subtraction with regrouping, Sweet M is having a series of setbacks.

It started a couple of weeks ago, when she had a meltdown at school during the diversity day assembly and her father had to go and pick her up. There have been intermittent meltdowns two and three times each week since.

After the first couple of meltdowns, her psychiatrist and I hypothesized that her Paxil dose might be too high. We reasoned that since I have a strong response to the increased sunlight in the spring, that she might be having a similar problem. So we decided to try to take her dose down just a little -- reducing it by 5 mg.

It seems that this wasn't the right move. My intuition was wrong.

On Wednesday her class went on a field trip to the Central Park Zoo. When the zoo's childhood educator was asking her group questions, she had to be the one to answer. When she was required to let other children answer, she flipped out.

Since I wasn't there I don't know exactly what happened, but it took three adults to restrain her and she was kicking and screaming at the top of her lungs, "Help me help me they're hurting me, please get the police, someone please get the police."

When a child is screaming "help me, they're hurting me, get the police" in the middle of Central Park, that's what people do: they get the police. Or in this case, they got park security. The teachers found themselves in the horrible situation of having to explain that they weren't abusing Sweet M.

Of course her teachers had already called us to come and get her, interrupting me during a conference call about the contract that seems to never quite come through, but that is another story. Sweet M's father raced by cab to pick her up, but there was incredible traffic in midtown, so it took nearly 45 minutes for him to get there. Meanwhile they had to call me back several times and I could hear Sweet M screaming and wailing and screaming, "I wanna answer the question, I wanna answer the question."

By phone her teacher and I strategized about how to get her in the cab when her father finally made it through the traffic. While one doesn't want to reward meltdowns, there had to be something at the end of the cab ride to make it worth coming home.

I decided to promise that we'd go to the pet store and find her a pet. She's been wanting a pet. Her teacher said, "Wow, that would work. You're pulling out the stops." We thought this was a great idea, so she put Sweet M on the phone.

I told her that when her father brought her home that she and I would go to the pet store and pick out a pet.

She started screaming at the top of her lungs, even louder than before, "No no no — no pet I wanna answer the question."

And what was the question?

The question was "What can you get in a rain forest?"

Sweet M's answer — the answer that she was desperate to share — was "chocolate."

She knows that chocolate comes from the rain forest because of our field trip to Hershey, where we'd seen a film about cacao harvesting, and bought a book for her class about what comes from the rainforest. Chocolate and cacao is her special area of expertise, and someone else answered with her answer: chocolate.

Her father arrived, and she was still hysterical, desperate to get back into the group, back into her partner, back into the rain forest exhibition.

So he took her in. Apparently once she was inside, she was crying, and then she screamed out the word "chocolate" — answered the question — and then said she wanted to go home.

My question: What hurts?

Not knowing what to do for your child hurts.



Mary said...

It even hurts second hand when all you do is read about it. And when it hurts THIS much from this far away, I can only begin to imagine how much it hurts over there. Much love to you and Sweet M.

MothersVox said...

Thanks, MOM-NOS. I just don't know what to do for her. I don't know how to make it better.

Usethebrains Godgiveyou said...

Wow... that must have really hurt not to get that out! I know my son told me once, when I criticized what he was going to say, before he got it out, it HURT him more than anything else I did. So, it might be important in the long run to listen to the whole story!

One more thing...I do hate making it into a "drug" thing, but I am speaking from PERSONAL experience! A few years back I was going through a period of extreme frustration, which some might have called depression.(Which came first, the chicken or the egg?) I tried paxil. I took off in a fit of mock rage after my mom, who is somewhat frustrating but the sweetest person in the world. I have heard since of others who had "episodes" on paxil.

This also probably isn't helpful, but I am looking into going into teaching. I knew in my spirit that I tend to be too sensitive, so I went to the doctor once again to try antidepressants after a 5 year period of being "clean". My doctor put me on lexapro. At first, it made me have a pretty positive attitude, along with higher energy, although I slept a little more. Now, after 6 months, I don't feel anything, but my self esteem seems to have improved tremendously. I still continue to not take things as personally as I have in the past, also.

So, for what it's worth: one man's cure is another man's poison, so I'm not saying "try it". But maybe, keep it in mind.

Anonymous said...

Poor Sweet M.

I understand how awful it must have been for all the adults, too. But let me say this. I think part of what drives pedantry, which I would classify Sweet M's need to "teach" as pedantry, is that the fact that we can collect facts so well and understand things like chocolate comes from Rainforests so well is one of the few things that autism spectrum people can be proud of. Maybe in another world we could be proud of how we can stare or pace, but here, one of the few things that we can get points on is our ability to show off our smarts.

I am wondering if you can get Sweet M to think about how important it is to be the one who knows, and how good it feels to be the one who gets to answer, and then see if she would be willing to let other children have that same joy.

I was recently told after a class, by a professor, that I needed to be quiet and let other people answer. The thing was I was working on not talking too much, if I hadn't been trying hard to shut up, I would have talked even more. She didn't realize that I thought I *was* giving them a chance to speak. (I didn't answer even half the questions, but apparently it was more than normal.)

The professor said it very nicely, but it still hurt.

I have no idea if it was a Paxil reaction. Maybe next time Sweet M could write the answers in a notebook when she doesn't get to say them aloud and then share the answers with an "expert" later.

kristina said...

A small change in medication can set Charlie off, too.

How are the teachers and the school responding? How are they reviewing what happened to be more pre-emptive in the future?

We have been doing a "waiting" program for Charlie and also working on him dealing with disappointment through a combination of social stories, schedules to give him a more concrete visualization of things, and a lot more. Slowly but surely.

What hurts the most is those century-long minutes when you know you can't get there.

Anonymous said...

Liz here from I Speak of Dreams. Oh, my, oh my. Poor Sweet M. That's a lot of feeling for one little girl. Poor you & Sweet M's father, too. Knowing your child needs you and not being able to be there.

There are confounding variables here, both change in meds and change in weather, plus the school year drawing to a close--neurotypical kids are decompensating too!

Have you read Greene's The Explosive Child -- one of families I coach has had a huge improvement in family harmony from working with the collaborative problem solving model.

The motto is, "children do well if they can"

All kids take three steps forward and one back--it's just more noticeable and painful with quirky kids. That doesn't help much, I know, but for me it helps when a relapse or regression occurs.

Anonymous said...

I have also heard of people having bad reactions to long term Paxil use. Have you considered taking M off the drug for a while and seeing how she does?

Also, I agree with Camille's suggestions of a notebook and explaining why others would enjoy having a chance to answer.

kristina said...

Another thought---I keep thinking about M and all of you. Along with practicising waiting, we have worked on what amounts to teaching Charlie to deal with frustration and anxiety---when things don't go his way. It might be that it's dinner time and he wants something special (sushi)--I'll explain how we're not having that tonight and, soon as I can tell he has calmly understood this, I praise him a ton, hugs, blanket, the works. But I am make sure he doens't get to the point that he's so upset that he's "gone." And somehow practicing those smaller scenes seems, slowly but surely, to be teaching Charlie how to handle bigger frustrations (like not going for a car ride and staying home after dinner on Tuesday).

Hope she is holding up in this unpleasant weather.

Zilari said...

I agree with Camille, on all counts. When I read this entry, all I could think was, "Wow, that must have been terrible not to be able to give the answer to that question!" When it comes to special areas of interest, many people on the spectrum have what might be described as a passionate and exuberant enthusiasm. Of course, we do need to learn to take turns like anyone else, but at the same time, this just seems like a somewhat unfortunate coincidence that the PARTICULAR time the question could be answered with something along the lines of M's "special interest" turned out to be a time when she didn't get to have the turn.

Also, in reference to "gaining skills and having setbacks" -- even if skill gains are positive, the process of implementing them into the repertoire of one's brain can be a somewhat tiring endeavor. It's difficult to explain, but I know I sometimes feel tremendously irritable right during / after I learn how to do a bunch of new things. Probably because things need to get mentally / internally shifted around.

Wendy said...

My heart goes out to you. On the positive side, Sweet M has made A LOT of progress this year. Good for her! I love reading happy news like that. As far as the episode at the zoo, I don't know what to tell you. C just had a fit when his ABA session started today. I have no idea why and I couldn't get him to stop crying. He wanted something...but couldn't tell me what. It's so frustrating sometimes, I know.

MothersVox said...

Thank you everyone, for your insights, thoughts, love, suggestions, and concern. Sweet M stayed home from school on Wednesday, and then had an okay day yesterday at school.

Today we'll see her psychiatrist about the medication issues, and the teachers will join us to offer their insights. So hopefully we will find some solutions for her.

I am particularly interested in the insights from folks on the spectrum about how important it must have felt to Sweet M to be able to answer the question. It helps me understand the depth of her need to participate in her special way, with her special area of expertise.