Friday, February 12, 2010

Guilt and Blessings

The Confession - Pietro Longhi

I confess tonight that I perhaps portrayed the person who came to visit us and assess Sophie's needs in a not-so-good light. I won't even go into the actual meeting because it was really out of this world, a scene worthy of Terry Gilliam's Brazil  -- and I actually so desperately want the services that I don't want to do anything to offend the persons in power. My main aim in jotting down my thoughts is to illustrate the ironies of this strange life we lead -- those of us who have children with special needs.

Sitting at a table with a stack of forms to sign, all of which attest to the fact that your child has received a category of "institutional deeming" or speaking on the telephone to a stranger about checking a box that signifies the potential death of one's child, all while beating up the eggs and grating the cheese for the Friday night omelette is what  I feel compelled to write about because it is not only what I observe, what jumps out at me as it is happening but what I must do. What I must do is write about it. Must write. Write.

I might add that there are many who battle disease in general or poverty or discrimination. My modus operandi is to speak or write the way I see it. Sometimes I sound bitter and sometimes filled with gratitude. Both of these are true. Having a tongue as sharp as a scythe has its benefits when used to break through to the other side. But it can also cause harm.

Above all, I want to impress upon anyone reading this that I am very aware of and grateful for the services that are offered to families with children like Sophie. Not a day goes by that I don't feel a gasp, an intake of breath, for those other mothers of Sophies who have none of the resources I have.


  1. I don't think you vilified Z in any way. I thought while reading and responding that you were but a little window into a gigantic problem we are suffering under in our country, that paralyzes us and our ability to function with integrity and responsibility. Our "little boxes" in general are zapping the life out of our institutions with more and more bureaucracy than anyone should be condemned to bear. And while I am grateful for all the help that can be given, I still cannot understand the lack of compassion that seems to come with those papers, as some kind of invisible stamp.

    Should it be so hard and/or difficult after a social worker, an intake person or whoever is to write the report observing the person who needs the help to spare the parent the reminders they live with day in and day out? It should be quite obvious that Sophia has a disability. You explained quite clearly that she is non-verbal and it hasn't occurred to them that after nearly 15 years of living with your child you could be possibly attuned to her needs enough to know what she needs at the time she needs it?

    Why would someone after observing a patient be ignorant of the fact that regardless of the child's age her inability to speak alone would be a barrier to ask for help if she needed it? Do you have to be reminded that your child could die if you are not there during one of her seizures? The reason I am frustrated about this situation is this emotional "price" that is extracted in order to provide what I would consider a necessary human service and a gentle acknowledgment of the already overburdened care givers by realizing that having to fill out a box where you need to say that your child "may kill herself" is not what you should have to do in order to get the help Sophie needs. While one can appreciate the value of the services, to me the lack of understanding of the child's basic needs and that of the parents leaves me wondering: have we forgotten that old saying about not mentioning the rope in the house of the hanged? Parents with children with disabilities have a tremendous load and if it is true that it takes a village to raise a child, it is also true that it takes a village to support the parents. No little boxes can take the place of that.

  2. But you didn't! You described her as kind and efficient (I don't know of any social worker who's ever called anyone apologizing for a delay ... we normally can expect both the delay and no apologies). It's the bureaucratic hitch that was frustrating, as they always are. Public social services are instrumental (Though in this country they are slowly being dismantled on the sly. But then, we have a clever and honest government, which we elected). Write, Elizabeth.

  3. Elizabeth,
    No doubt the love you have for Sophie is crazy deep.
    And that you have crawled around on the floor of your heart and brain more times than I could fathom.
    This fiercely beautiful , tender and powerful love cannot be written on forms. That you must deal with this constantly, fighting for , advocating, it is terrifying to me. I wouldn't feel guilt for any of it. She is your daughter. You are her mother.

    Write... I'll read... pages of it. It is honourable and truth.

  4. It's a sorry state of affairs that parents have to beg and plead for assistance for their disabled children. No one should be treated this way, but this is how we behave toward those who need help.

  5. Yes. You must write. You have to. And it's okay. Not only okay, it's what keeps you sane through all of this. Don't apologize. Ever.

  6. I think all of us have dealt with irritating agency staff, and I'm sure there are plenty of staff who have dealt with us (in all our glory!). Goes with the territory. Don't beat yourself up.

  7. You didn't sound ungrateful; you told the truth. That, in itself, is liberating, powerful, releasing, fair and YOUR RIGHT.
    In speaking your truth, you help others (like me) to feel free to speak theirs. Write on!

  8. I second what Karen and others say. You TOLD THE TRUTH. And you write so compelling and beautifully and inspiringly. You're an inspiration every single time.

    I get so sick of dealing with The System, too. But since having Max, I have also developed The World's Biggest Mouth. Which has come in handy when dealing with The System. :)

  9. Okay, maybe you have a sharp tongue, but I thought you used it very gently. And with grace, as you always do.

  10. You go through stressful events regularly and with such insight and intelligence I find you an example to follow.

  11. You're human. That's it. Doesn't change Sophie's condition or needs. She qualifies.

    And you're entitled to observe, silently OR out loud, the idiocy of bureaucracy.

  12. Yes the ironies abound. I'm SO grateful that you write it as you see it. Your authenticity is refreshing and a relief to those of us who have similar experiences but can't articulate it with nearly the same grace and beauty.

  13. We understand this Elizabeth, of course. I think you do an amazing job balancing it all, esp the emotions. Write on. Tell your truth.



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