“She is in the 90th
percentile!” – the nurse exclaimed excitedly as she has recorded Izzy’s
height on the chart. My tiny little Bean who hardly made it onto the chart when
she was born has grown into a String Bean.
“Oh that’s great.”
– I blithely told the nurse with an affirmative head nod. Then after she left
and it was just the Bean and I in the small examining room, I silently shook my
head. “I’m so screwed” – I murmured
to myself. “I have a 3-foot tall giant
baby who still can’t sit up.”
Not that I haven’t noticed that Izzy has grown out of her
stroller and has grown into the size of a small ball python. I’m barely 5”2
when I stand straight in my thick winter socks, and even with the leftover baby
weight I only weigh around 109 pounds, on my fat days. I find the best-fitting
clothes in the junior department and I regularly use “adaptive tools” to reach the
items on my kitchen shelves. I’m bordering on child-sized, but space-efficient is
the term I prefer. Izzy, on the other hand is built like her Dad: she is tall and
lean with very long arms and legs. Phil was practicing weight bearing and
standing with her the other day and I was astonished when I saw her in a
vertical position: she would be a head taller than her peers, if she was able
to stand.
Due to Izzy’s height and weight, it is increasingly more
difficult for me to pick her up, to carry her, to put her in her stroller and
to give her a bath. Not to mention suctioning her nose, which is reminiscent of
wrestling with an octopus. Since Izzy has the height and weight of a two year
old but not the body control, it is a challenge to maneuver her. When you pick
up typical children who are my daughter’s size, you don’t have to scoop them up
from a lying position, as they are able to sit and stand. They also cooperate by
lifting their arms and holding on to you, which makes a significant difference.
I can’t just casually hold Izzy in one arm, I have to give her extra support
and be prepared for a sudden drop seizure that could leave her injured. Of
course it could also leave me injured, depending on the colliding body parts.
Izzy’s potential tallness makes me slightly nervous, because
of its future implications concerning her care. There is no guarantee that she
will ever walk, but even if she does, lifting, maneuvering and taking care of a
body that is larger than your own is strenuous work and comes with special
challenges. Since I always keep one eye on the future and my middle name is
prudence, I’ve been working out with some serious weights to build up more
upper body strength. I do have some nicely toned arms and shoulders as a result,
but really, who am I kidding, I’m still the size of a 12 year old boy.
When I was reflecting upon my feelings concerning Izzy’s
growing body, Ashley X came to my mind. Ashley, or the “Pillow Angel” as her
parents affectionately refer to her, is a severely disabled Seattle girl whose
growth was attenuated in order to keep her child-sized and thus more manageable.
Ashley received high doses of hormones to stunt her growth and went through
several surgeries to have her breast buds, uterus and appendix removed. Her
parents stated on several occasions that the purpose of the treatment was to
ensure the best quality of life for Ashley and not to make life easier for the
caregiver.
I understand the concerns and fears that drove Ashley’s
parents to make such drastic decisions about their daughter’s body, but while I
can relate to their feelings, I cannot imagine making the same decision for my
daughter. In fact, it makes me shiver just to think about it.
Even though Izzy’s potential tallness makes me slightly
nervous, it also fills me with pride and joy to see her budding beauty. When I
look at her long lean body, her peaches and cream complexion, and her bright
blue eyes, I see Phil’s reflection in her features. Her appearance reminds me
that she is a part of Phil and a part of me, but I’m also aware that she is her
own self. She belongs to me but I
don’t own her. I will probably make decisions for her as long as I’m alive, but
my decisions will always honor her and her rights to her own body.
I repudiate growth attenuation at an intellectual level, because
it violates very basic human rights, but my aversion goes deeper and it feels
wrong at a visceral level. I will never put my daughter through growth
attenuation, just like I won’t pull her teeth out, even though she doesn’t use
them being completely tube-fed. I will never have her uterus removed, just like
I won’t have her legs amputated, even if she doesn’t learn to walk. I will not have
her breast removed, just like I won’t cut her lovely curls off, even if my life
would be easier if she had a crew cut. And that’s just it. I don’t see how growth
attenuation would benefit her, as it wouldn’t help with the mucus, the
seizures, or her motor skills.
I don’t believe that preventing the sexual maturation of severely
disabled girls directly improves the quality of their lives. Rather, it eases
the psychological discomfort of people who perceive secondary sexual
characteristics incongruous with a limited physical and mental condition. I
wonder if this psychological discomfort also played a role in the decisions of
Ashley’s parents. Perhaps they embraced the role of the parents of a severely
disabled child, but they didn’t want to become the parents of a disabled adult.
Pillow Angels don’t have breasts or menstrual cycles. It is not easy to wrap
your mind around your child’s disability, but I personally rather transform my
own thinking and perception than alter my daughter’s body.
*** Claire has discussed growth attenuation in depth in many excellent essays and she is quite an expert on the topic. Check out her blogs, if you are interested:
http://severedisabilitykid.blogspot.com/
http://saynoga.blogspot.com/
I also recommend this link: http://www.ashleytreatment.info/
19 comments:
just because you have the body of a 12 year old boy doesn't mean you can't bulk up! come on, eat more protein, raw eggs like rocky! I want to see you with bulging muscles like those female body builders, i'll call you susan powter, ha ha ha! also, i'm glad you aren't going to amputate your child's legs or pull her teeth out, that would be kind of weird!
on a completely different note . . . Happy Birthday!
I was totally unfamiliar with the Ashley treatment prior to following Claire and yourself, perhaps because I have been caring for my son, a male. From the first reading, I have been left profoundly disturbed at the concept. Are sterilization and castration made politically correct or palatable because someone coined the words "growth attenuation." This practice is a huge step backward for humanity...a simple denial of personhood by those who feel and act as if they have rights over the disabled. The fears and needs of caretakers are masking revolting and invasive procedures...because some people cannot express themselves adequately gives no one a right to decide that a naturally developing body "is life not worth living"...the phrase used by Nazi's for the evil of the holocaust. Thanks for resurrecting the the issue and I know it will come up over and over again until this wrong is eliminated. Thanks, Erika!
I'm right there with you on both being nervous about the size of our children in comparison to ourselves and growth attenuation.
I'm 4'11" when I'm standing as straight and tall as I can and Aria is at least 2/3 of that now at age 7 when she's in a verticle position. She's also just under 50 lbs so carrying and moving her around out of her wheelchair can be a bit of an ordeal. Honestly, I have my husband do the bulk of that because he's much taller and stronger than me. I've casually joked about us switching who stays home and who works as Aria's continues to grow, but it's not so much of a joke in the back of my mind when I need to rest after carrying Aria from wheelchair to floor/couch. I'm planning to get into better shape this year so that I may stay home for Aria longer, but her future in this area remains a concern for me if I'm completely honest about it.
As for growth attenuation...I don't like it and the very thought of it all disturbs me now as it did when Ashley's story was on the news a few years back. Aria also has static encephalopathy and many of the issues Ashley's parents "took care of" are issues I don't look forward to facing with Aria, but that I'm ready to face just like every other issue we deal with that is not plesant. When you said, "It is not easy to wrap your mind around your child’s disability, but I personally rather transform my own thinking and perception than alter my daughter’s body." I nodded my head in agreement so much because that's exactly how I feel about it all.
Thank you for sharing, Erika. I always appreciate your blog posts and the beautiful photos you post with them. Happy Birthday!
Let me echo the birthday wishes and tell you, Izzy is so beautiful!
I'm on the short side, too, although with considerable more heft. I'm not sure the heft makes any difference, other than it being harder to knock me over. Your program of working out so that you'll be strong enough is smart and healthy.
Hopefully, you'll be able to get increased hours for nursing in the future and that will take some of the physical demands off of you.
This is such a simple yet powerful post and followed by those photos of that gorgeous girl of yours -- well, I'll be thinking about it and you and her all day, probably!
In the meantime, is it your birthday? Happy Birthday, dear Erika.
The main assumption of the parent's of Ashley were based on this concept of "static encephalopathy" which carries little to no meaning. It simply means that the damage in the brain will not change. This was taken by them (or explained to them erroneously) to mean that their daughter would not have any mental development. If you are convinced your child is a vegetable it makes their decision more understandable. Unfortunately I pity the person
who does not educate themselves to understand their child's condition beyond what any particular doctor might pronounce. I can name several doctor's who's ignorance would have cost my son's life if I had not done the opposite of what they deemed necessary because they were closed to any discussion of the matter, dismissing my intuition on the issue(though it turned out I was right)
I don't see the medical establishment taking into consideration parent's such as you Erika, in the sense of realizing that there is more to these issues than merely medical propriety. You see they have already decided it is a medically sound procedure (growth attenuation) so any parent who bases their decision on their feeling about the matter are not to be taken seriously.
The direction society is taking in these matters, as one who follows the bio-ethics debates, is severely depressing.
What Kim (KWombles) said.
plus
I have been moving people larger than me for over 30 years. There are ways that bypass the smaller size of the more-motor-competent. You do not need to learn how to move everybody (PT School) but I feel furious at the thought that early intervention therapists have not given you basic education in handling your child.
Wishing I could spend some time with you! Happy Birthday, Erika!
(And Deborah, (darrona) if you invite me to your visit to Morgan's Wonderland....?)
I ditto your opinions on the radical, Nazi-like treatments under discussion in this post.
Erika, Happy Birthday----and you're stronger than you know, though I regret that you have to be. I'm 9 pounds lighter than you and of course Amelia weighs much more than Izzy. So far, still managing, though I wouldn't say that without a big dose of humility and gratitude---things can change in an instant, and we all need to be gentle with ourselves, even though we spend so much of our time and energy in long, long moments of emergency of the sort that used to make filler stories for newspapers: "Mother Lifts Car Off Tot!" Only, for us, these moments last days, months, years, or in my case three decades. I'm not going to pretend it isn't difficult. But don't look so far into the future just yet. Consider adding a little yoga in with the weight training. And what a sleeping beauty is Izzy!
I had no idea. Thank you for telling me about this. I agree with you wholeheartedly. Growth is a gift, and you will adapt.
Happy belated birthday, my strong friend.
A very thoughtful, insightful post.
I second the suggestion of doing yoga, particularly vinyasa yoga. I started doing it 3 years ago when Robert weighed about 55 pounds and I was pushing my personal threshold for lifting him. He now weighs over 70 pounds, and I can still lift him. Another thing you can do is start looking into special equipment, including figuring out a personal care station that is close to hip height for you. We use Robert's Rifton bath chair on top of the shower stand--the chair has straps and he can be secured. An adaptive chair of some sort that can be raised is also a good idea. And don't be afraid of moving toward a wheelchair. I was initially, but it's been a significant improvement, of course. Also available are handicapped strollers; Convaid is one of the major manufacturers, although these tend to be bigger than wheelchairs because the footprint is different. I'm probably just telling you things you know, though.
Belated Happy Birthday Erika :) Izzy looks beautiful as always.
Really thought provoking post. I wasn't aware of the concept of growth attenuation. I do not understand how let alone as parents but as human beings anyone can do that .To grow naturally the way god intended is a basic human right.
I guess it goes without saying that this post really speaks to me.
I'm your size (minus 2 inches) and while Charlie does not have a physical disability, I was long ago worried about what I would do when he was bigger than me. That day came when he was about 8 or 9.
I read about the 'pillow angel' some years ago and just felt horrified.
It is not easy when Charlie has a 'neurological storm'---a really severe tantrum--and he is the size he is (about 1 inch shorter than my husband). But never, ever, would we do anything to change him, literally to 'stunt' him. We try, I guess you could say, to grow with him.
And very good that you are working out. I work on keeping myself in good running shape.
I know a couple who adopted a very mildly retarded daughter. When she became a teenager, she got big and strong enough to injure her mother. The mother was so afraid of the daughter that they institutionalized the girl for a few years, and then she went to a group home for young adults needing supervision.
People can get injured by a strong and violent child, or by trying to lift or move a heavy child. And then you end up with a preventable health problem for someone who needs to be healthy to be an effective caregiver. I am not so sure the issue is always so black and white. But most of all, I think parents should be able to make their own decisions.
Ah, the donkey fable works both ways -- if parents choose the Ashley treatment, they are going to get criticized and their donkey will drown. I personally don't see what is so wrong with the Ashley treatment (though the term "pillow angel" makes me puke). Sexual maturity is hard enough for a normal adolescent! For a girl like Ashley, it has only negatives and no positives. But again, I think the parents should be allowed to make their own decision. Not everyone will agree, which is perfectly okay. But I don't think they should be criticized for their decision, just as I don't think any of us, dealing with a disabling health condition, should be criticized for our decisions. We are all doing what we think is best under difficult circumstances that we did not choose. Remember the donkey.
A very belated Happy Birthday!! (flying visit, sorry, Dimitri has ants in his pants!!)
Anonymous,
I agree that these issues are never black and white and I also agree that parents should have the right to choose when it comes to the treatment of their children. However, when I say treatment, I mean valid treatment options, and the Ashley Treatment is still highly controversial and not legally acceptable in most countries. It certainly wouldn't be an option for someone with mild cognitive disability, like your acquaintance, as it's only offered for children with severe disability. Which is, in and of itself, indicative of the discriminatory nature of the treatment. As your example demonstrates, someone with a mild intellectual disability can also present physical challenges for the caregiver. As matter of fact, you don't even have to have an intellectual disability: children with autism, behavioral issues, mental illness can also display behavior that poses serious risk on their parents; yet, nobody would even dare to suggest to use growth attenuation to help to better manage people with these conditions.
My biggest problem with the Ashley Treatment is its underlying assumptions and implications. George Dvorsky, in defense of the Ashely treatment said that the violation of Ashley's dignity shouldn't be an issue since she lacks the cognitive capacity to experience any sense of indignity. In other words, it's acceptable to violate the dignity of people with limited cognition, since they don't understand what's going on anyway. This very dangerous and arrogant sentiment was responsible for the inhumane treatment of the disabled and the mentally ill for so long. After all, if the intellectually disabled cannot experience any sense of indignity then what is wrong with locking them up in institutions or hosing them down.
I don't doubt that Ashely's parents did what they thought was best for their daughter. Who am I to do that? But Ashley's parents didn't just make a decision for their own child, they are lobbying for the acceptance and legalization of the treatment. It is not their private business anymore when in support of the Ashley Treatment bioethicists and lawyers are drawing up documents that propose the redefining of personhood and suggest that people with severe cognitive disability should be called non-persons. Since I have a daughter with severe disability, I feel like these discussions and decisions have a direct effect on her and my life.
Erika, thank you for your thoughtful note.
I think the real question is what constitutes dignity/indignity and humane/inhumane treatment. The key difference is whether the child is loved and cared for or whether the child is discarded and neglected.
I'm sure Ashely is deeply loved and cared for and, even if I disagree with her parents, it's not her well-being that I'm worried about. Rather, I'm afraid that the Ashley Treatment creates a dangerous precedence: if something as drastic and intrusive as the Ashley Treatment can be carried out, what else can be done to a severely disabled person? I'm afraid it would open up possibilities for abuse and for treatment that would indeed violate a person's dignity. Not to mention the discussions and legal documents that try to justify it. It's just all very scary to me.
My daughter is eighteen now. I remember her being tested for Angelman's syndrome but it came back negative. I always just wanted an answer, any answer, as to why she was handicapped. When she was a week old, we were told she could go blind due to a congenital cataract. She is fine. We were told she may never walk, she runs.
Who knows what the future will bring.
I liked what you wrote about the Ashely treatment, especially the part about the parents being uncomfortable with their daughter becoming a woman. I found it difficult watching Katie go through puberty, realizing she was no longer a handicapped child, but was now a handicapped adult. I grieved again, partly because I let go of my hopes that maybe one day she would be "okay". I love my daughter as she is, tall, beautiful and smart, with a cognitive disability that leaves her like a two year old. She is my hard gift.
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