Friday, February 12, 2010

Speaking the Worst

another vintage ad

The social worker from the other day called today. Let's call her Z.

Z: Hello, this is Z. I have couple of questions for you.
Me: Sure, what do you need to know?
Z: How does girl communicate with her brothers?
Me: She doesn't speak at all.
Z: Does she use words?
Me: She's non-verbal. She can't talk.
Z: Does she use sign language?
Me: No. She uses augmentative speech devices but in a very simple way.
Z: How do you know what she need?
Me: I just do, I guess.

We hang up the phone. It rings a couple of seconds later.

Z: This is Z, again. I have another question.
Me: No problem.
Z: The box checked on application says that the girl need 24-hour monitoring. Why?
Me: Oh. I guess I checked that because either her father or I have to sleep with her because of seizures.
Z: Oh. She hurt herself in night then?
Me: Well, no. But we want to be near her if she has a seizure.
Z: Well, usually this box checked if girl might kill herself in the night.
Me: Oh, no, no, no! Her seizures make it necessary that we sleep with her so that we can hear her.

When I checked the box, I just figured that yes, Sophie basically needs 24-hour monitoring. The Husband and I resigned ourselves long ago to the fact that one of us has to sleep with her. We know many, many parents who sleep with their children who have epilepsy. There is the natural fear that she will be alone, seizing, while we sleep and perhaps frightened. There is the fear that she will get out of bed before a seizure and fall down and hurt herself. Above all, there is the fear of SUDEP (sudden unexplained death in epilepsy patients) -- a terrifying possibility that is, sadly, little talked about in the epilepsy world.

There, I talked about it.


  1. Has this so-called social worker ever dealt with a family that had epilepsy before? Is she a student or something? Did she not pay attention when she visited your house? I am mystified,and I'm starting to get a little bit irritated with her. Just sayin'.

  2. Yeah--that's one I push to the back of my mind as often as possible, but it's one thing to do it as a parent, another as a medical professional.

  3. Wow, social worker seems a bit daft.
    This is so powerful, hard to fathom, but important to speak about. I guess I just want you to know I'm listening.

  4. The crook of my arm was made for grace. I have two other children who I love to snuggle with, but grace molds right into me. It's supposed to be so.

    Tell them to change the f'n box. It's misleading.

  5. i'll say it again: i can't imagine elizabeth.

    i went to school with a highly-functioning boy with epilepsy. brilliant, brilliant boy.

    he passed in the night, and since then (not before) i have known that this can happen.

    so i rpeat: i can't imagine. how do i know this and a social worker doesn't?


  6. yes. speak. it is so powerful to articulate our greatest fears, concerns, the weight of what we live up against. it is a relief for the enormity of what we bear within to be softened.

    last night i was the speaker. invited to share my story at the premier showing of Extraordinary Measures. 1998 i was diagnosed with a fatal disease that was so rare only one paragraph appeared in any medical data.

    today i google searched Pompes disease and it turned up 100 pages of relevant resources.

    and my heart is lighter for speaking out....

  7. There is also the constant fear of pulmonary aspiration, a common way that our children don't make it through a night. How is it conceivable that they would not need 24 hour monitoring?

    A bit too many quaaludes for this social worker, no?

  8. How has this person gotten a degree in social work? May I ask? We could not get a degree in Psychology in my day unless we had four years of medical school, did rotations and worked mostly with mental illness since it would be the only way we could differentiate between physiological and psychological issues according to what was expected of us if we were to work at a Hospital.

    Do they read? I mean, do the social workers read about the disease or just glance at boxes?
    I am with Karen here, I am more than irritated. Yeah, go ahead and leave a child alone at night and then when something happens the same social workers are going to say that the child was neglected.

  9. I so understand that scariness of seizures. My son has them. When he is sick or sleep deprived he normally sleeps in our room on his cot. It scares me because his seizures are during sleep. I never know if he has them or not.

  10. All -- In all fairness, I'm actually not really certain whether this person is actually a certified social worker or not. She could very possibly be an intake sort of person. But she has been in the job for over seventeen years --

  11. And I should add that my aim was not to denigrate her but to really illustrate the absurdity of checking boxes on a form with SUDEP -- such is the world, though...

  12. Great blog! This is the first chance I've had time to really spend reading it, and I'm really enjoying your personal stories and pictures, plus the vintage advertisements!!

    I'll be back :)


  13. I cannot imagine the overwhelming frustration that you must feel.

  14. worker (or whoever she is) must get more training. IRRITATING!!! You handled that conversation much more politely than I would have.

    RE: the sleeping. I'm glad you mentioned that. For over a year, I have been sleeping on a mattress on the floor outside of my son's bedroom in case something were to happen at night. Obviously not because of epilepsy but for other reasons due to his aggression. Thanks for bringing that up. It's something I don't ever talk about because it just seems like such a point people would judge you on -- you don't sleep in bed with your husband?!?! I guess things are just different when you have a child with special needs.

  15. Well, whoever she was, she needed more training before stepping into(and being expected to evaluate, or report meaningfully upon) a situation like Sophie's. When qualified people are looking for jobs, how could they send "an intake person" for such an important communication? It defies logic. Still mystified.



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