"Ashley Treatment"

[babyboomer]

I never noticed this particular forum before, but its name really goes with the story re: Ashley, the 9 y/o w/ static encephalopathy (sp??) ... her parents used drugs to halt her growth and hysterectomy, etc., to stop her from physically maturing (she had started w/ some signs of puberty when she was 6). Anybody wanting all sorts of news articule re: this just needs to go to google news and voila!

I'm no ethicist (although I definitely know what is ethical!) - I'm a realist. I'm a sped teacher and have worked w/ severely handicapped children. Our sped segregated campus has kids/teens/young adults who probably are as severely handicapped as Ashley. (I teach at an integrated site - our office is at the segregated one).

To me, the "Ashley Treatment" makes sense. We're talking reality here ... having an adult who can't sit up means she is either strapped in a w/c (which probably doesn't go from room to room) or she's lying down somewhere. And because of her size, she gets moved when there either is a Hoyer lift (HUGE) - even with the lift, you want 2 people, or those two people do it manually, each and every single time. She probably won't get moved all that much - where is she gonna go?

They'd need a van w/ a w/c lift (or something similar). If they want to visit anybody, the folks need accessible doors, etc. And when they go visit, Ashley is either in the w/c or laying down somewhere - probably not in the midst of the group!

I have a disability (duh! that's why I am here!) and have already taken my beloved school system to task via filing for noncompliance re: physical facilities, so I am not averse to making waves when rights are trampled. I personally see this treatment as providing a real way for Ashley to continue being around family and going places with them. I think she would prefer being around her family than being too big to be held and part of the group.

Yeah... this is not a rubber stamp for everyone with a nonambulatory child! I think the big thing is to think about her cognitive level - would she rather be adult sized and adult looking? or be with her family, held by them, etc.?

what's your thought/s?

[MA6564]

I am a mother with a disabled "adult child". Elizabeth is 27 and I have cared for her at home for six years. When she was in nursing homes or hospitals or rehabs, she was purposely kept thin for the staff to be able to handle her more easily. She was tube fed and given only enough to keep her maintained. Her weight was never above 106.

Once she came home, she insisted on eating "real food" and her tube was removed. She eats regular food and with it, has gained about 35 to 40 pounds over the years. So I do understand WHY she was kept thin. It isn't easy moving her around, but I do it for her. She is happy, so therefore, I am happy.

While I understand the reasoning that Ashley's parents have, I believe that surgical proceedures to purposely stunt a person's growth is not ethical. Ashley, though disabled, is still human. If there was a medical reason, surgery should be considered on our "babies". But to just nip and clip for OUR convenience is totally beyond my comprehension and ethics.

[jul97]

Wrote this in January:

Saw this story on Nancy Grace last nite and the more I hear about this-the more I am on the parents side. Here's why:

1) I am 5-1 and 11? pounds. I can walk a little bit. If I was 5-10 and 200 pounds, I truly believe that I wouldn't be able to walk at all!! I just got lucky, my dad's mom is short and I got her genes, my brother and sis are way taller than me. If my parents had selected to keep me on the short side through hormone treatments when I was an adolescent and mobility was becoming a problem. I would now be so thankful to them, by being proactive they increased my quality of life soo much. Last week I was able to get into my uncles home w/o a major production or another demand on my mom and my uncle. I was able to be dropped off at a bar by my mom and driven home by my friend w/o placing another demand on my friend to load my chair in her car. Or having my mom have to stay up and wait for a call from me that she needs to come back out to get my cause I need a special van to transport me. She was way tired!! These things make me so so thankful!!

Now when it comes to being able to get in and out of people's homes-I do not care about societal attitudes about people in chairs, I just feel lucky I can do so with ease!!!!!!

2) I HATE my period, if I could snap my fingers and never get it again I would! And if I couldn't take care of it myself, again feel so lucky I am able to, I would really want something to stop me from getting it.

I wouldn't care about repo rights for all PWDs. I would care about not putting another huge burden on my mom, if I were being cared for at home or not having to have some creepy guy aide dealing with that if I were stuck in a medical care setting or if I lived alone, oh god my PCA is ten minutes late and I am leeking, gross.

3) The fam said that they removed the girls breast buds so she could sit easier in her chair. They do surgeries all the time for that reason sometimes that's the goal just to be able to keep kids comfortable in their chairs or hygiene reasons.

4) My mom had a patient who refused a baclafin pump because she wanted to have kids-totally her choice and she should be able to make it!!

I told my mom if that were me-I would want the pump to become more independent!! I would be so angry if they said no because we can't interfere with your repo rights.. It's my body, my life, my choice.

5) I admire these parents for standing up for doing what they feel is best for their kid and not worrying about society judging them. These things should be decided on an individual basis-what's best for each person NOT oh what kind of message does it send, IMO..That's where I differ from many disability advocates!

Here's the parents side:
http://ashleytreatment.spaces.*********/PersonalSpace.aspx?_c02_owner=1

Again I totally disagreed with Nancy Grace's take on it. She totally acted like caregivers needs don't matter at all and they do!! As much as a mom loves her child she cannot just make all of her own needs permanitly disappear any more then she can cure her kid by kissing em on the farhead!!

You have to live in the 'real world' here!!

[gmherps]

right on !!!!!!!!

[LIZARD]

Hmm...this unleashed quite the firestorm on another board here some time ago. I personally don't agree with it unless the condition is known to be fatal by a young age. If not, such hormonal upheaval can create evern bigger problems. :(


LIZARD :)

[brainandspinalcord]

I imagine this is quite a controversial topic with people feeling strongly on both sides, and some undecided (as with all controversial topics!!). Personally I feel that her family did what they thought was best out of love for Ashley, so good for them. I'm thankful we have all the extensive treatments and therapies available to the families who want them, and other families at least have the choice.

[jul97]

I could not agree with yoiu more!!!!!!!!!!

As,a woman with a disability I fully support Ashley's family and do not want disabled advocates limiting the treatments options available to me, or my family should I be to young or other wise incapable of decideing for myself!!

I cannot be outspoken enough about this due to so many disabled adults being what I'd call brain washed to be against this girl's family and really on a larger level wanting thenselves/government involved in what should be private mannors.

I just cannot understand how so many disabled adults can't understand how I firmly support free choice and not limiting what treatments the can consider!