Years ago I met a family, when I was a behaviour consultant, who loved and desperately wanted to be good parents of their daughter with an intellectual disability. In conversation with me they said that they felt confident about being parents to the little girl they loved but felt inadequate about raising her to live well and safely with a disability. They said that their problem was that everyone they talked to about their daughter was helpful, but none had a disability. None could answer their very specific questions they had about living with a disability. I didn't really understand, at the time, what they were talking about. Not really.
I do now.
Parents try their very best, I believe, to do their very best at raising their children. I remember a mother, exasperated and angry at me for talking to her about her son's sexual behaviour, she had been told by a doctor that her son would be an eternal, never sexual, child. And she did what he suggested, she raised him without consideration of the skills that he needed to be safe from victimization or from being accused of being a victimizer. After venting her anger at me, she wept with frustration.
Some might have accused her of wilfully ignoring her child's sexuality, or of wishing it away, or of being hyper controlling. She was none of these things. She wanted to love and parent her child well - and she followed the advice of a doctor. When she met this doctor, she said, she was desperate for answers - and he gave her answers. He took on the roll of 'shaman' and she took on his view as her own. This isn't an abdication of responsibility, it's acting responsibly.
It's easy to be angry at the mother in the blog posts from a couple days ago. And I was. But I tried to imply in my writing that she was following what, for some, is considered best practise. I'm sure that she is terrified about making a mistake, raising a child that is like you while being very unlike you can't be easy. The philosophy of integration at all cost, inclusion or death, is taught as gospel to parents by other parents and by professionals working for organisations which have adopted an almost 'anti-disabled' zeal in their desperation to keep people with disabilities separate and apart.
She angered me because of what she did to me and what she did, by extension, to her son. She angered me for pulling her son away forcibly. But then ... if she feared, because she believed that what was happening was dangerous, that her son was in danger of becoming ghettoised ... well parents doe all sorts of things to protect their children.
I feel for parents - who are mostly trained by non-disabled people about how to raise disabled children. Parents, like the one's who visit here on this blog, are doing so I believe primarily because they are open to learning from voices, not just mine but all who comment here.
We have a role in parenting the next generation - we need to be able to hear the voices of parents and answer questions that they may have.
So thanks to the family members amongst the family here on this blog. Please encourage others to learn from people with disabilities, what children with disabilities need to learn from them.
I can somewhat relate to this, as I'm hard of hearing, but not Deaf. It's an interesting and somewhat frustrating netherworld. When I was a child, my mother told me that someone (a teacher? a relative?) had suggested that I go to a school for the Deaf, since even with amplification, I had some trouble keeping up. She was afraid that I would somehow lose what residual hearing I have and only sign and no longer speak. Essentially, she didn't want me among children she viewed as more disabled than I. Ultimately, I would have liked to have learned ASL at an early age so I could have become fluent, but I do hear well enough that I eventually made it through school and college in the hearing world. So, while her choice of school was for the wrong reasons, it may have been the right choice. However, I'm sure if I were growing up now, I would have had an IEP and supportive services within an inclusive setting, instead of struggling to the degree that I did.
Dave, these posts are so great. I'm one of those parents, doing the best that I can, meeting whatever adults with Down syndrome I can..... and wanting my daughter to have examples of adults who share her extra chromosome. And wanting ME to have examples of adults to guide me in what it's like, because I don't know.
And thank you for reminding us that each parent does the best they can, including the mom in your post the other day.
This post was written on a hotel internet system that was and is constantly crashing, as a result the post is rough, unedited and not entirely well thought through. I didn't say it as well as I wanted to ... but i decided to go ahead.
When Shawen was very young, I read a piece on the internet written by a young woman with muscular dystrophy who had been one of those "poster kids" (is that the right term?) Jerry Lewis used to get donations on his telethon. It was an eye-opening moment, and I then began to value what people with disabilities say about disability over what the non-disabled have to say.
Her message was basically to stop spending enormous amounts of money looking for a cure when you could spend more on things that people with MD could use to live more independently. And, more importantly, she rejected the way she was used to make people pity those with disabilities.
I try to relate that to my son, and try to figure out what it is he wants out of life instead of what I want for him.
It's made more difficult by so many well-intentioned parents. The organizations push inclusion, but then insulate themselves. They talk about how much alike people with DS are to everyone else, then they talk about how "special" and "angel-like" their children are. And I've seen first-hand how some parents manipulate their children with Down syndrome to appear to be "superstars", so I don't always trust the messages they try to preach.
This is one of the few places I feel I can hear a truly balanced, sensible, perspective on disability. Sometimes I feel confirmed, sometimes my pov is tweaked and often I feel like you have shown me the real reason that something that has bothered me for a long time is troublesome.
As always, I appreciate you and the work you've chosen to do.
I often come across people who judge parents for having allowed their children to be sent to instititions years ago. I try to explain that that is not a reason to judge or blame, that those parents were really doing what they believed was the best thing they could do for their children at the time, and at great personal sacrifice, since they no longer had their children with them and often had very limited visitation privleges.
Parents, it seems that they (we) are often the scapegoats for professionals who change their minds about best practices.
You can have empathy and understanding, but nothing replaces real world experience.
There's a term for when doctors make blanket predictions for the future, especially with no scientific basis: Voodoo Medicine. For those who practice Voodoo, Voodoo curses "work" because its victims know about the curse that has been put on them. When doctors make predictions based on nothing but mystery, anecdotal data and/or bad science, it's just Voodoo.
Fat people get it all the time. When I was in my 20s I was told I would die before I was 30 if I didn't lose weight. In my 30s I was told I'd die before 40. I'm nearly 50 and I've learned -- any doctor who gives me the "You'll die before..." crap gets an earful of statistics from actual science studies, often just before the words "you're fired, I don't believe in Voodoo Medicine."
Disabled people are so often told that they will never be "normal." WTF is "normal"?!? Normal is so flexible it can touch its toes without bending over. Normal means something different for everyone. If being in a wheelchair is your (for a generic definition of "you") normal, then so be it. It's not up to any doctor to use Voodoo Medicine to then declare that you will never do this or that because of your wheelchair.
That goes for any other ability or disability out there.
This sort of "best practice" is exactly the reason we need to speak up for ourselves. Who better to know what is or isn't helpful? Who better to know what we need or don't?
The mother from the other day (I didn't post at the time because I think flames would have come out of my ears) is missing out on so much information that she could access, as well as forcing her son to as well. It reads to me like an extreme form of denial; wherever it came from, she obviously took it and ran to a ridiculous extreme. I'd love to know just who came up with the "don't talk to them!" idea of "inclusion." What a load of BS.
Doctors simply don't always know, and they don't know what they don't know. This isn't an insult, and many disabilities (mine included!) can involve extensive medical care, but there's way more to disability than any medical aspects. As a kid my mom told me it seemed a bit odd for a kid as healthy as I was to spend so much time around doctors. She was right. Orthopedically I'm...interesting, but I'm not sick.
I always get the sense of fear from your "angry people" stories. Looks like Yoda was right - fear leads to anger, and anger to the dark side.
thank you so much for this! perfectly said
I am a parent of a wonderful little boy with Down Syndrome. I have learned so much from reading your blog, thank you.
I don't think it is actually all that easy to be angry at the mother.
I think it's much, much easier to have compassion for the mother at the cost of ignoring the son. I think it's damn hard to remember that the mother is not the most important person in the situation, or the most deserving of sympathy.
We don't know if she meant well. She might have; she might not have. A lot of parents don't. It's possible to mean well and do bad things, but it's also possible to be the parent of a disabled child and have culpably bad intentions.
And whether she did or did not mean well, her feelings and intentions aren't the most important thing here.
The most important thing is for the kid to know that what she did was wrong. And to know that someone else also knows that it was wrong, and was willing to act accordingly.
I agree with Moose that nothing can replace real experience.
I do think that the mother was scared and while I do agree that the child's experience was of paramount importantce I do not believe you can divorce that so easily from the mother. She loves him fiercely (that is how I interpret her behaviour) and he likely loves her back. She obviously has expectations about him and what kind of life she wants him to have. She hasn't got to the point in parenting where you realize that what you want for your child and what they want can be 2 different things. And here is the thing - when kids try to live up to what parents want for them instead of what they want for themselves - well it never works out very well.
I believe that this problem cannot be resolved outside of the relationship. But what you did was give him reassurance that what he suspects is out there is real. I believe he will fight for it. I hope the mother has the courage to let him go.
Thanks for the thought provoking posts
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