On Advocacy, Motherhood, and Why They Are Often the Same Thing (#395)

Charlie’s class had a field trip today: Walking to a local ice cream parlor and buying ice cream. Charlie being on the gluten-free casein-free diet, I had told his teacher I would send in soy milk ice cream in a cooler. Charlie’s afternoon yesterday having been one mini-tantrum after another climaxing with a rather big one in the black car, I completely forgot to get the cooler and the dry ice. And I actually did not even have the soy milk ice cream, as the one grocery store I ran into yesterday before Charlie got home from school did not have any (well, I could not find any) and if I buy the “ice keem” in front of Charlie, he wants to eat it immediately. And all of it. Now.
Buhreetoes_1
Jim was dispatched at 10.45pm (the store closes at 11pm) and returned with exactly the right kind of “ice keem.” He and I then had an intense midnight conversation about “what is the right placement?” and advocacy and doctors.

Placement, advocacy, doctors: These are all topics that Jim and I have talked, debated, disagreed about, agreed on, questioned and worried over endlessly for Charlie, especially on days when Charlie has had the kind of backseat behavior squall as he did yesterday in the black car. We have learned that straight complaining, getting emotional, and anger are not effective tools when advocating for Charlie, at least for us. It is not that we do not complain, get very impassioned, and feel incensed about some of the educational services that Charlie has had in past schools—that is the stuff of our conversations (late night, via email, cell phone, and in snatches throughout the day—-we prefer not to talk about these things in front of Charlie). But—for Jim and me—sheer anger and its like have not been useful tools when actually sitting down in meetings about Charlie’s education; about his future.

I have learned that I need to have the same calm, peaceful, assuredly unruffled composure in such meetings as I do when Charlie is having a spectacular tantrum. When I act as if “it’s fine, this is the way it is” when Charlie is upset and crying, his tantrums are of the two minute variety; when I am frantic and talk too much, Charlie’s agitation lingers, and escalates.

Learning how to advocate for Charlie has taught Jim and me something simply about advocacy. It is not calling up people and yelling at them. It is strategy. It is sizing things up and thinking things through. And it has been a very helpful education in helping to advocate for what Jim’s parents, and especially Jim’s mother, need. Grandma had been making progress last week; this week started with testing for diabetes and then got tough. She has been trying so hard to walk—she wants to come back home—she struggles. And so there were Jim and I yesterday at midnight, talking over what to do for her and how to address Grandpa’s responses to a difficult situation.

And not an easy situation for a nine-year-old boy with severe language delays and a big, big heart—especially for his grandparents on both sides—-to hear talked about all around him.

Grandpa was up early this morning; Jim got up to talk about some weighty issues; I knocked ice cubes out of two ice cube trays, packed it all in a freezer Ziploc, grabbed a bag of frozen peas and carrots, stuffed it all into Charlie’s insulated lunch box along with the soy milk ice cream, and hurriedly emailed his teacher to let her know about my improvisations. And then got up an extremely groggy Charlie to meet the bus.

Charlie had a great time on his field trip (needless to say, he loved that “ice keem”). He was yawning a lot, but had a fine day at school and afterwards: Just as he and I were leaving for the pool, thunder crackled high up in the humid sky and, sure enough, the pool was closed until the storm passed. Charlie shrugged that off, listened to me reading Polar Bear Night and Where the Wild Things Are, had a happy ABA session, stared with great curiosity as the burrito man fixed him a tortilla-less burrito and some “guackamolay.” Charlie was all smiles as we drove home with a special Friday dinner. Charlie ran to get his utensils and a “p’ate” from Grandpa’s cupboard, put the container with his burrito on the table, stared at it, sent it flying.

“Oh Charlie,” said Grandpa.

I’m an ABA mom. I surely violated a basic ABA principle tonight: I picked up some of the thrown rice and beans and meat and dumped some into the garbage, I set the container down on a different spot of the table, I called Charlie (who had not cried, screamed, or otherwise behaviored) back to the table, we ate. Charlie and I did a farm animal puzzle together—“puzzle pease!” he kept asking—-and he went to bed.

“But it was mostly a good day, right?” Jim asked me, back home after train delays on a stormy day.

“Yes,” I said. And noted the lack of screaming, banging, etc. after said food was thrown.

Jim and I talked about how Charlie, surrounded by change and uncertainty, has been mostly peaceful, gotten himself out of tantrums in two minutes, and apparently wishes he could go to school every day, he likes it so much.

And if we had just sat on our hands and said, and thought, “Charlie’ll just get over it” (head banging?) or “everything will be fine” or “he cannot do X until he does Y,” I do not think I would be writing this here tonight.

I do not think that Charlie would be sleeping so peacefully in his own bed, in our house, near to Jim and me, tonight.

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Comments
2 Responses to “On Advocacy, Motherhood, and Why They Are Often the Same Thing (#395)”
  1. tara says:

    I’m really not sure how I would define myself in terms of the interventions available to treat children with autism. I am sure that the relationship we maintain with our ABA therapist/behavioral consultant will most assuredly help with the challenges we face today with Littleman’s behaviors.
    ABA has always been a part of the plan, an underpinning in the structure that supports our son’s learning. We also have used sign language, speech, OT and physical therapy, yoga, swimming, therapeutic horsebackriding,GFCF diet,and a development therapy placement that favors Greenspan’s child led, floortime model. This kaleidoscope of therapies has proven to be the right mix for us and what is interesting is the way in which they all seem to compliment each other!!

  2. Have yet to try yoga; the horseback riding sounds great—-this is something we have started to look into for Charlie. ABA remains the cornerstone for Charlie—-he always seems to need to return to that structure.

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