A mile in their shoes?

by Natalie P.

January 5, 2007 | Filed Under Parenting | 2 Comments

The news is filled today with the story of “Ashley X” – a severely disabled child whose parents chose to have her growth stunted via estrogen treatments. In addition they had her breast buds removed and she was given a hysterectomy.  While commentary on the father’s website is mostly supportive, there is a tremendous amount of criticism – both on the site and on the news about the choices the parents made.

On tonight’s episode of “As It Happens”, on CBC Radio One, Barbara Budd (?) asked a guest doctor whether or not this treatment was done out of convenience for the parents and not truly in the benefit of the child. The doctor explained that by keeping the child small, plus the other treatments, she can be cared by her family for longer and have a better quality of life – fewer bedsores, no issues with menstruation. (The breast buds were removed to prevent large breast growth and the associated discomfort). The goal was to enable the parents to care for her at home for much longer than would be possible if she grew to her full adult height and size. Since she has the mind of an infant, and cannot even hold a toy or roll over, they have NOT, in my opinion damaged her quality of life in any way. 

Barbara countered with the question of  whether or not the issue was really one of convenience for the parents because of a failure of the medical and home care system to be able to provide better care. 

You know it really pisses me off when journalists couch thinly veiled accusations in “hypothetical” questions.  Her parents don’t live in a hypothetical world. They live in the REAL world – something journalists should try more often. Regardless of whether or not a better home-care system would have given the parents more options, the REALITY is that it isn’t there. The reality is that the parents are doing the best they can and made a choice that they believe will allow their severely disabled child to have the best quality of life possible – with her family.  And SO WHAT if it also allows her parents to have a better quality of life too – have YOU lifted a 130lb adult several times a day?  Helped them in and out of a wheelchair or a car, or to go to the bathroom for a bath?  Why is it in situations like this, that so many people think someone is evil for even suggesting giving consideration to the impact on the rest of the family?  This child has the brain of an infant – keeping her body younger so that she doesn’t suffer period cramps, painful swollen breasts, and the inevitable bedsores and issues that come with being too large for a single person to adequately lift or care for, seem like totally reasonable approaches to me. Under the same circumstances, I likely would have made the same decisions.

I’m sick and tired of self-righteous assholes judging parents of disabled kids when they themselves have NO experience and no intention or capacity to pick up the slack and help those people with their lives.  Looking after a NORMAL, HEALTHY child is challenging enough.  Dealing with a disabled child can be devastating.

When my youngest was born, he had “club foot” – his feet were bent in – not his ankles, fortunately, just his feet. I asked the doctor if they would straighten naturally and he said, “Probably”.

Probably? WTF?

So I asked if there was anything we could do to ENSURE that his feet were straight as an adult – that would prevent him from having knee problems, playing sports, and wearing normal shoes.  I was told that with stretching exercises and special shoes, we could be more proactive in ensuring his feet would straighten.

We waited until he was 8 months old to see if they would get any straighter on their own. They didn’t.

So I took him to a specialist, had the $180 shoes ordered (I was on a medical plan that covered 80%), and waited for them to arrive.  The osteopath was an asshole.  When I took the shoes and my then 9-month-old child to him for a fitting, he went into some overblown tirade about how he was ABOVE such trivial tasks as fitting a child’s feet in special shoes that need weekly adjustments.

In the end I took him to a public clinic that specializes in providing physiotherapy and family services for handicapped and disabled children.  They had plenty of experience in fitting specialty shoes and braces.

While there, the physiotherapist asked if she could perform a full assessment on my son.  I said SURE.  (Better to know sooner, rather than later if there is a problem).  She did all kinds of balance and cognitive exercises with him over the next 30 minutes or so, and then handed him back and announced how nice it was to see a child whose only problems were his feet.

After adjusting the shoes, she looked me straight in the eye and said without blinking, “You WILL donate these to us when you are done, right?”  (I did.  You don’t argue with someone like that. She used the right mix of intimidation and guilt.  She could have been a Reverend Mother in another life.)

She explained to me that they have a numbering system for rating the difficulty of raising a handicapped child.  A downs syndrome child is a “3” – it is as difficult as raising 3 children at once.  A cerebral palsy child is a “5”.  Her stories certainly brought home the difficulty of coping with raising a handicapped child – especially if there are other children in the family that need care and attention too.

She explained that they had no problem counseling teens or at-risk mothers for abortion if they didn’t want to carry the pregnancy to term. “It’s hard enough to care for a child you WANT, much less a disabled one that you don’t want.” 

So when I see these anti-abortion activists picketing abortion clinics, or self-righteous assholes criticizing people like Ashley’s parents, it ignites my heartless ire.

How the hell many of those “activists” have adopted heroin-addicted babies? How many of them are fostering the unwanted handicapped, fetal-alcohol-syndrome, and crack-kids in their homes?  Not bloody many, I’d wager.

Yes, there ARE animals and horribly evil people out there who shouldn’t be parents – but Ashley’s parents strike me as anything but. Hell, they are still together 9 years later. (The birth of a handicapped child often spells the end of a marriage).  They are doing the best they can to ensure that she has the best *quality* of life. It’s clear their actions are borne out of love – not evil.  While her father said the decision was ‘easy’ in light of the overwhelming evidence of the benefits, I doubt it was taken lightly.

Until you have walked 9 years in their shoes, you have no right, and no basis on which to criticize their decisions.

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2 comments so far
  1. Matteo Parkhurst August 21, 2007 8:57 am

    One’s first step in wisdom is to kuesteon everything – and one’s last is to come to terms with everything.

  2. AK November 6, 2009 11:49 am

    This is going to be very depressing, but there is another, excellent reason to arrange for a developmentally disabled child to have a hysterectomy (or vasectomy):

    Some creeps molest disabled people and can get them pregnant.

    So, this is what Ashley X’s parents could have been in for had they not taken that precaution:

    Their daughter, who might have grown to have an adult body and a toddler’s mind, could have been raped by a perv, become pregnant, produced an infant she could not have parented and Ashley’s anguished parents, already caring for Ashley would have had a grandchild on their hands and consciences as well.

    Wonder if any journalist or intrusive religious types ever thought of that scenario?

    Because, am sorry to report..these things do happen. They’re depressing and not feel good stories, so they dont get reported too often.


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