Why We Schedule EEG’s Not Soccer Games (#259)

Driving over an hour and a half to see Charlie’s pediatric neurologist; striving to relate in a few minutes eleven months of neurological, behavioral, and educational history; talking about seizures (which it does not appear that Charlie is having), further testing (an EEG), and changes in Charlie’s medication; dialoguing on and off on the ride home about how much—“how much medicine to give,” “how much all that education contributes” (the vast percentage, it seems, but the medicine does play a significant role in helping Charlie to be best prepared for his learning).
And then there was starting off a Monday following a day full of activities with Charlie flopping onto his back on the lawn before boarding the bus. There was worrying that Charlie not having school on Tuesday for a religious holiday could well mean not a joyful “day off” but extra hours of him being fretful at the unstructured time.

And, wondering how Charlie can communicate to us the effects of more Risperdal or less Zoloft, or of the reverse.

I suppose those are some of the “stresses and burdens” that families raising “normal kids” might find more difficult than those families that, like us, are raising a disabled child. Elizabeth Weil in her March 12th New York Times Magazine article, A Wrongful Birth?, notes that “….several studies have shown that the raising of children with impairments is on the whole a lot less difficult and a lot less different from raising so-called normal kids than we imagine it will be.” David Wasserman, a bioethicist at the University of Maryland, is quoted as claiming that “‘Families with severely impaired children do not differ significantly in stresses and burdens from families with normal children'”; he cites articles like “The Experience of Disability in Families: A Synthesis of Research and Parent Narratives” to back up his assertion.

I both welcome Wasserman’s claim–especially if it provides compelling evidence for viewing the birth of disabled children as anything but “wrongful”–and have been unable to stop thinking about it and the “stresses and burdens” of raising my disabled child.

“Before these kids are autistic, they’re children,” Charlie’s verbal behavior therapist nodded to me on Saturday, as we talked about him participating in a social skills group. When I took Charlie to the pool on Sunday morning, the other swimmers were all adults and he had none of the thrilled smiles as he had last Tuesday, when there were several kids splashing and showing off in the water. Charlie–our lovely kid–just wants to hang with kids.

And the fact that, when he does, he swims beside them, smiling and looking and maybe babbling a phrase; the fact that he needs to learn the most basic social skills; the fact that we talk to the neurologist about how the Zoloft can help increase his sociability: All these make it pretty clear that raising Charlie, my son who has autism, is very, profoundly, different from raising “normal kids.” We have to schedule EEG’s, not soccer games amid the birthday parties.

I remember the yearly check-up with Dr. Wong, my pediatrician, and how I shivered standing on the scale as the nurse with her cat’s eye glasses and upswept hairdo adjusted the weights. Charlie has a pediatrician, of course, but the visits with the neurologist feel more like those yearly check-ups and check-ins. The scale was digital and there were bars for him to hold onto, and everything was in metrics: He is 138.2 centimeters (54 1/2 inches) and 33.4 kilograms (73 pounds)–a gain of 3 1/2 inches and 10 pounds from last year. “He’s matured,” the doctor noted as Charlie sat placidly in a chair next to me, after tensing some and frowning as we went over the details of his year. Charlie sat wearily on the long ride home (with a few detours in central Jersey) and dove into a late burrito dinner with a big smile.

Wasserman, the University of Maryland bioethicist, cites research on the “stresses and burdens” incurred by families raising disabled children in contrast to those who are typical. I will have to do some of my own research to see what the academics have to say about how raising a disabled child–an autistic child–has its particular gifts part and parcel with those “stresses and burdens.” I suspect some things will be the same, and some–many more?–different.

First though I’ll start my research by hanging with Charlie–teaching Charlie–tomorrow and for many more tomorrows to come.

6 Responses to “Why We Schedule EEG’s Not Soccer Games (#259)”
  1. Ennis says:

    hmmmm – that makes you 4.5′ tall if you’re roughly the same height as Charlie …

  2. Kristina, do you know that Risperdal can cause seizures?


    Some doctors either are not as informed as they should be, or they do not inform parents fully. A mother I know online, who has an autistic child with epilepsy, told me that a doctor had suggested Risperdal, apparently without being aware that the drug could worsen seizures.

  3. Bonnie, thanks for the website. He’s not having seizures—he takes it for head-banging.

    Ennis—I still have 6 inches on Charlie!

  4. Christine says:

    Wow, that was a hard article for me to read (the Weil one)! I’m always shocked how visceral my reactions are to this kind of dialog now that I have Oliver in my life. And I have my own opinions, but I will look forward to hearing what you learn and think about the stress of raising disabled children in general and autistic ones in particular.

  5. KC'sMommy says:

    Hi Kristina,

    Charlie is one big kiddo! I bet he’s going to be very tall:)

    So glad to hear he’s not having seizures, that is good news!

    Gosh I know what you mean about taking our kids to Therapies, Dr.’s appointments etc. Sometimes when we are driving in the car I wonder what it’s like to be one of those Mom’s out there on the field/park watching their kiddos play soccer or baseball.

  6. Eileen says:

    Just from my informal observations, I would say that the stress one feels with parenting depends a lot on the individual parents. I watch my siblings and how they parent their children. My sister with two typical developing children creates more stress in her life, it seems to me. She is not a very patient person and reacts to things very differently than I would. She stresses over things that her kids do that I see as so minor, has way to high expectations for them, has them involved in so many activities, and she’s way too involved in the PTA and all that. I find it very difficult to relate to most of my siblings in the same way anymore. I look at what they perceive as “a problem” as no big deal. A simple typical “problem” that I would welcome. I think our stress is different with our children, not because they are more demanding, but because of the heart ache we feel for the difficult challenges in life they have to face. But on the other hand we have learned to appreciate the little things more, I feel.

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