“You need a whole community to raise a child. I have raised two children, alone.” ~Toni MorrisonPosted in Ashley, Family, Socialization By Single Dad On April 4, 2012
I just read this touching post over at UnlockTheSecretVoice, it is entitled “Community.” And, yes, SingleDad has an opinion, glad you asked.
Claire, she no more of Life With A Severely Disabled Child, (and we know why she needed to bail on that blog; are all men morons?) wrote, in part, in a comment on that post:
As for “size” and “accessibility”…there are many people (think about those poor boys coming back from the war) who become disabled as adults and the world becomes inaccessible to them. So, we fix children’s bodies so they supposedly can access more activities, but ignore the rest of the disabled population because they are adult size. See … a social problem, not a problem with our kids. In any case, any place that can accommodate a stroller, can accommodate a wheelchair.
As we know, Claire is voraciously anti growth attenuation (see here) as is someone we all know and love but stays anonymous on his other blog, here, as well.
But, saying any place that can accommodate a stroller can accommodate a wheelchair does not meet the point of that post. If anything, advocating growth attenuation does! And before you go all ape-shit on me, I absolutely consider it immoral mutilation.
Things conspire to stop me from doing even simple things with Pearlsky such as going to see her grandmother, about three hours away. Between my physical limitations (my back) and Pearlsky’s size, without a lift or two healthy adults at grandma’s, a trip is impossible. Simply toileting her is not possible. A disabled adult who is higher functioning mentally and physically (minimally able to help him/her self when getting out of the wheelchair) would have no issue. Pearlsky simply is “dead weight” … a huge difference.
I recently had two trips, one to a beautiful island to help with a dying woman and one business trip to a fun city in the States. Either one would have been fantastic for a “mentally typical” (screw it, “normal”) 19-year-old woman in a wheelchair. She, and I, would have been able to do many things and have a great time. We would have brought along a female (aide? partner? high priced call girl?) to help, if for no other reason than respecting some messed up social norms (a father just can’t see his disabled daughter in a state of dressing or whatever). A rental wheelchair van, accessible hotel, and a great diversion, a normal diversion.
But what would Pearlsky get out of it? Even if flying were not too difficult (I still don’t have the guts to try it) and we brought an aide … would it be worth it? And I would need two aides (ok, one aide, one Craigslist special) to make the logistics work.
Now, if Pearlsky were smaller, and she is only 88 lbs (40 kg), maybe I alone could get her in and out of her chair to solve a bit of the problems.
Accessibility is barely half the issue with children like ours. Many situations frighten or upset our kids. Why don’t we do more with them? Because they are loud and because they get upset, distressed, tired, cranky, they seize and gesture, and the like. We don’t take babies to many places for the exact same reasons, but an infant can be picked up and comforted and nursed. Or hidden in a sling. Or picked up and removed trivially.
If Pearlsky were the size of a small child, we could travel. We could see Grandma. How much did she miss by not being with me on the recent trips? How much worse it would be to take her anywhere, though, because I’m pretty sure she would have a hard time.
David lives in a residence that is so far away from anything that it makes you wonder about where I could take him for a few hours if I wanted to take him some where. Walmart? I guess I could bring him home for weekends if I really wanted to, but at this point, it would be hard on him, and me. Plus it’s too far away, two hours or more. My home is accessible but that doesn’t make it emotionally and mentally accessible.
We don’t need just physical accessibility. Nowadays there is a lot of that. But when was the last time you saw an adult changing table anywhere other than my house? Even “family bathrooms” (and I just learned what they are) may have infant changing tables, useless to us. Where is there a quiet place, if needed, anywhere for the disabled? Pearlsky loves IKEA and Home Depot and the symphony, but sometimes it becomes a bit much. How fast can we get back to our van? There is no other place to escape to. If I could just pick her up …
We need either mental accessibility, growth attenuation, or … what we have now.
I got yelled at today. I am having a small “dinner party” in a couple of days and was inviting a very dear friend and her husband. She said “yes” and asked how many people were going to be there so far. I said “so far, with you, three.”
Then she gave me a rash of shit.
What about Pearlsky?
The truth is that Pearlsky would be right near us, probably watching TV in the same room … maybe at the table for a bit, but I did not count her.
Lazy? Indefensible? No, just something else she will yell at me about in heaven …
I would have said 3 as well (I would have forgotten to count myself!)
I’m actually in favor of growth attenuation. I read all the articles about Ashley. I’ve read the pros and cons. I absolutely think that this should be a parental choice with hospitals having ethics boards review it before the surgery. Being able to take your severely disabled child with on vacation, to a sibling’s basketball game, to grandmas or even just to the store allows them to participate in as normal a family life as possible. Without the surgery, many children have to go into residential care and can’t go on home visits for all the reasons you listed.
Like most decisions dealing with special kids, it often comes down to choosing the lesser of two evils.
Glad you’re back. We know our kids and our life better than anyone else. So for those who want to criticize why we do or don’t do this or that with them, they can suck it.
I,too, am glad you are back.
As for Ashley, I don’t know why the parents did not amputate her arms and legs. She’d be the cutest little Glo-Worm then. So easy to care for her diapering needs, no more fingers in the mouth or getting the pinched in the doorways, no more grabbing other people’s faces, interfering with care, trying to get those danged socks and shoes on the feet is no longer an issue.
Should recommend it for all who need total care. Takes up a lot less space.
Do they make ointments for a rash of shit? I think so…
Sorry…I have nothing to SAY really, I just love subscribing to the hot-button topics, but since I am a pussy I am not really going to weigh in on one side or the other, but getting all the e-mail notifications in my inbox by subscribing to comments makes it easier for me to pretend that I actually have friends.
Nothing to see here, move along.
Sorry but this is really terrible. You state growth attenuation is not morally justifiable and then go on to highlight how much it would make care easier. You cannot have it both ways. Growth attenuation is wrong, period. There is an inherent conflict of interest between parent and child and serious legal issues involved. Sterilization of a minor requires court intervention. We can thank the eugenics era for that (see what is going on in North Carolina). Check out my post today that takes you to task. You are way too good of a writer and thinker to post such a weak essay.
WJPeace: You seem to be referring to this line … “We need either mental accessibility, growth attenuation, or … what we have now.” Just because it would, in fact, make my life easier does not mean I advocate it. I have said that G.A. is abhorrent. As an example, I can say that my life would be easier, and arguably (subjectively) better, if Pearlsky were to be euthanized, and yes, it is probably true. Does that mean I support the action? Or want it? Or believe in it? Hell no. Just writing those words makes me ill, yet the statement is valid. Sometimes abhorrent or wrong actions might have positive outcomes (which is always subjective), but that does not make them less wrong.
Thanks for the comment and good words.
SD, Your points are well taken. My concern is basic: you can easily be quoted out of context and your words used to justify growth attenuation. Those unfamiliar with the nuances of growth attenuation could easily misunderstand your position. One needs to be explicit in their opposition to growth attenuation. The subjective benefit or merits of growth attenuation are questionable at best.
Well, I hope the two of you 🙂 can come to my concert in May. Very handicapped accessible at one venue with a handicapped private bathroom… Glad you’re back. It’s been a while!
Jet blue is very accommodating to my daughters needs, it is still a struggle and not ideally comfortable for her, but she loves Disney World, flying at night has been helpful too.
That said the stares when she was younger were more easily hid, now people blatantly stare without abandon. Society has to change so our children can grow up without feeling like they are the source of others entertainment. I am against any unnecessary treatments for my child, growth wise, hormonal wise to stop her period. To me our children daily suffer enough I could not do it, but I am speaking as a 36yr old mom of a 13yr old when I am 75 god wiling still trying to care for my 52 yr old daughter I might reflect back differently.
Thank you to Jennifer for the birthday wishes.
I’m glad you are back too.
I don’t know if I’ll ever fly anywhere ever again let alone with my special kiddo. I’m happy for you because you got to fly and do some traveling. I am still struggling with leaving her. I’ve only been away from her two nights since she became disabled four years ago. She was so off track when I returned home. She’s on full hormone replacement. She has no pituitary gland, so the whole puberty issue is going to be interesting. We’ve talked with her endocrinologist about starting estrogen as soon as she begins her menstrual cycle. Her Endocrinologist is completely against the removal of any reproduction organs. I’m pretty sure the estrogen will make her stop growing. It’s too much to wrap my head around. Thanks for getting me thinking about it though. I really need to start researching. She just turned eight today.
You have a point among many. No matter how small a child is ‘made to be’ or how physically accessible a space is, there is still the issue of whether or not she(he) can tolerate the noise, confusion etc.
Sarah has, fortunately for me as a single parent, ended up to be 75 pounds and 4’10”. I can still lift her by myself for short distances. She is done growing. But, here’s the thing. Even though I can physically take her places, she cannot go. It’s all too much for her. It’s upsetting and confusing. She gets nothing out of it. She comes home exhausted, not in a good way.
So, I get a sitter. That’s just the way it is and she is much happier for it. Her small physical size is not helpful to her quality of life.