Parents Under Fire for Making Daughter Stay Child Forever

[BhamMama]

Good for them for taking the reins and being proactive in their daughters future health and well being. If we only had more parents like this.

Amraann, is Ritchie full grown, or will he be? As you know, my Anthony is also where your son is at yet his growth seems to have stopped. He is now about 4' 5" and 70 lbs. He'll be 13 in Feb. He already has a moustache and has exhibited puberty symptoms for the last year. According to bone imaging, he might make 5' 1" but we aren't holding our breath. They still don't know if the meds are the reason he's short. We sorta play the damed if you do and damned if you don't game.

If anything I could have done differently would have made a huge impact on his future health...I would have done it in a heartbeat.

 

[Taximom]

Had you read all of the posts, you would see that even those who were angry at first, changed their minds after they read further.

I'm with Reb about others outside of WS that even made this an issue. They need to mind their own business, take care of their own children and be thankful this wasn't their issue to deal with.

This sort of reminds me of the huge war in the deaf community about cochlear implants. To me (not deaf) it makes perfect sense to have an implant that might help me or a loved one hear better. To someone that is in the deaf community, it is considered unethical.

It's a very interesting world, isn't it?

 

[Details]

It's been posted on msnbc, with a commentary saying it's wrong - worried about the implication on rights of other disabled children, rather than the very real issues of what will happen as Ashley becomes physically adult, vulnerable to rape, increasingly hard to care for, increasingly suceptible to adult problems.


I think her parents made a very wise choice, one that might well help many others in a similarly extreme situation. I hope they don't become the latest cause extremist groups decide to use to raise money - it looks like there is a ramp up to do that, judging just from a story on Fox and one on MSNBC.

 

[Amraann]

Good for them for taking the reins and being proactive in their daughters future health and well being. If we only had more parents like this.

Amraann, is Ritchie full grown, or will he be? As you know, my Anthony is also where your son is at yet his growth seems to have stopped. He is now about 4' 5" and 70 lbs. He'll be 13 in Feb. He already has a moustache and has exhibited puberty symptoms for the last year. According to bone imaging, he might make 5' 1" but we aren't holding our breath. They still don't know if the meds are the reason he's short. We sorta play the damed if you do and damned if you don't game.

If anything I could have done differently would have made a huge impact on his future health...I would have done it in a heartbeat.

BhamMama, Richie is about the same size and height as your son.
He also is showing signs of puberty.
My husband is not very tall and neither are his relatives.
At 5'6 I am a giant of a women in my family.. Although my dad is 6'2 and my 15 YO (who Richie is built similair too) Is 5'8

So there is no way to know yet if he will gain some height.
He is about due for a Neurology appt and the run of tests so I will have a better idea of our options after that.

Taximom I know the implants can be painful for those that have never heard a sound before. Also it is considered frowned upon in the deaf community to conform to the hearing world. IMO back in the 60's when those fighting for disability rights began their fight, those in the deaf community took a different approach. I personally see nothing wrong with their approach.

 

[Taximom]

BhamMama, Richie is about the same size and height as your son.
He also is showing signs of puberty.
My husband is not very tall and neither are his relatives.
At 5'6 I am a giant of a women in my family.. Although my dad is 6'2 and my 15 YO (who Richie is built similair too) Is 5'8

So there is no way to know yet if he will gain some height.
He is about due for a Neurology appt and the run of tests so I will have a better idea of our options after that.

Taximom I know the implants can be painful for those that have never heard a sound before. Also it is considered frowned upon in the deaf community to conform to the hearing world. IMO back in the 60's when those fighting for disability rights began their fight, those in the deaf community took a different approach. I personally see nothing wrong with their approach.

Hi Amraann! I hope all goes well with your son.

From discussions I've had with others, the issue in the deaf community is not necessarily the pain. To some, it is an insult to bring technology into a world that already has a language (sign). There are more issues but I don't recall them all. There are several documentaries out there (I think PBS/Nova did one) that have interviewed people from both sides of this issue.

I guess I just wanted to point out that I think others make a mistake when they make an issue out of something (like Ashley's care) that they don't know anything about. That isn't directed at anyone here, btw.

If Ashley's situation opens some eyes in the world, then that's a good thing!

 

[kittykat1]

Truly a courageous step for the parents of this little girl they love so much.

 

[angelmom]

I challenge anyone to read the entire blog and have anything critical to say about these parents. They have made an amazing discovery about the care for severely disabled children that could prevent endless heartache and pain for everyone involved.

Especially in light of my own sick twinge of envy when I hear of someone having a hysterectomy, and my nearly lifelong consideration of when a breast reduction would be imperative vs. just cosmetic. :angel:

 

[Malapoo]

I may have misread, but what I got was she can't hold her head up when lying down? I think she can a bit when she's upright, but if she's down, she can't raise it at all.

I'd encourage everyone to send the family a short note of support. I'm sure they're getting a lot of nasty mails, so any support might be helpful on "bad days".

 

[Details]

I think this is really quite a good option, maybe something worth using in general with such extremely challenged children. Mentally they are children, if they also are physically children, it is so much better for both them, and their caregivers.

I've been reading a little, on another forum - poor children terrified by their menstrual bleeding, big strong men with a toddler's mind attacking their parents, and, of course, the abuse, pregnancy, etc. that can happen in a home. It seems like they'd be far happier if they stayed children, as they are mentally. Much safer for them, more able to stay with their parents, no traumatizing experiences for them, no rush of puberty.

Of course, some have some hopes of maturing, and I think any operations should wait until they're enough years old to be sure, or with a diagnosis with no hope of improvement - but on the whole, it sounds like an incredibly positive choice for the poor child - so much better than being a (at best) 2 year old that the world sees as an adult. It sounds like it'll drastically improve their lives, and to some degree potentially lengthen their lives as well, since they won't have to go in homes as much, will have less ability to get to things that they can use to harm themselves (like stoves, poison, traffic, and the whole outside world).

 

[kahskye]

I was just watching Nancy Grace, and she was all over these parents for doing this to their daughter. She even went so far to say something like, "what next, are you goint to cut off her leg in fear of her getting a tumor?" I was having my own concerns whether the parents had a right to do this until I came here to WS and found this thread and read the parent's blog. Until one walks in another's shoes, keep your mouth shut. I honestly think the parents had their daughter's best interest in mind and carefully thought this out, not making an impulse decision. My heart and prayers go out to these loving parents and their beautiful daughter.

 

[czechmate7]

I have an 11yr old Autistic daughter who hasn't hit puberty yet, but I've discussed options with her Neurologist as well as with a Gyn doctor about when the time comes. They both gave me their opinion and felt that "a surgical procedure" would insure better hygiene, no menstral cramps and God forbid unwanted pregnancy.

Also, I work in surgery and it isn't all that uncommon to see a young girl with severe CP and/or mentally handicapped getting a hysterectomy. As long as they leave the ovaries there isn't a problem with hormones...it's not a weekly occurance, but happens more than you might think.

PS...Nancy Grace is ignorant!!:razz: (IMO, of course!!)

 

[T-Rex]

Just playing devil's advocate, but what if the girl gets cancer by 50 as a direct result of the estrogen treatments. Is that fair? Will that be worse than bedsores?

 

[Details]

Just playing devil's advocate, but what if the girl gets cancer by 50 as a direct result of the estrogen treatments. Is that fair? Will that be worse than bedsores?

Bedsores kill people...

 

[czechmate7]

Bedsores kill people...

Isn't that what killed Superman?

 

[Vegas Bride]

I work with the disabled and understand why the parents have chosen this route. They're doing everything they can to give their child a safe and comfortable life, I'm sure they also worry about what will happen to her after they're gone.

VB

 

[Taximom]

I had no clue NG was going to cover this story and unfortunately I sat through the entire thing. By the end I was sobbing. The psychologist she had on actually said that she hoped these parents went through psychological testing before making these decisions.

The young man that was once the poster-boy for CP also annoyed the heck out of me. I'm glad he overcame his issues, but I highly doubt they were anything like some of us have to deal with. I was really astounded at his comments. One of the things he mentioned was that we need to address the health care industry and insurance. GOOD LUCK with that. We can't get them to pay for any more than 20 speech therapy sessions per year!

NG did have a caller with a disabled child state that she agreed with what Ashley's parents had done. Thank you for that little moment, NG.

kahskye, wonderful comment all around. I couldn't agree with you more.

 

[Taximom]

Oh, did anyone catch them kind of mocking the use of "pillow angel" (a loving nick for Ashley) on NG? :furious: How dare they?!

You can bet I'll be sending Ashley's parents a note of support AND another note to Ms. Nancy Grace.

 

[reb]

you know.. one of the most important things i want to shout from the mountaintops to the entire world... is that just because the 'slippery slope' happens SOMETIMES.. doesn't mean it happens ALL THE TIME!!
NG's comment, 'what are they gonna do next, cut off her leg?' is downright stupid, totally unnecessary, unrealistic, sensational, and overly-dramatic (for the sake of ratings, obviously). totally uncalled for. open debate is one thing, but that was just a low blow. can we have some REASON and sanity here, nancy? just because caregivers might use their evolved human intelligence and medical science to improve the lives of severely, hopelessly disabled people (and make it easier for their caregivers to give them good care- also make it easier for parents to keep them at home!) doesn't mean that we're all going to turn into nazis and open death camps!!!! GET REAL HERE!!!
you know this smacks of pro-life fanaticism... i think what is really getting people incensed is that they are sterilizing her-- the ultimate birth control. ooooohh, think of all those babies she could have, and we are taking that away from her-- SO unfair! the same people who are up in arms over this are the ones who would insist that if she got raped by the hospital janitor, they should allow her have the baby!! SICK if you ask me.

whattaya wanna bet-- those same *advertiser censored* that gathered around terri shiavo's hospital are going to take their circus of absurdity over to this family's house and make their life a living hell. that's what they get for being honest, progressive-thinking individuals and trying to educate people, in the new dark ages.. sheesh.

 

[Taximom]

you know.. one of the most important things i want to shout from the mountaintops to the entire world... is that just because the 'slippery slope' happens SOMETIMES.. doesn't mean it happens ALL THE TIME!!
NG's comment, 'what are they gonna do next, cut off her leg?' is downright stupid, totally unnecessary, unrealistic, sensational, and overly-dramatic (for the sake of ratings, obviously). totally uncalled for. open debate is one thing, but that was just a low blow. can we have some REASON and sanity here, nancy? :clap: :clap: just because caregivers might use their evolved human intelligence and medical science to improve the lives of severely, hopelessly disabled people (and make it easier for their caregivers to give them good care- also make it easier for parents to keep them at home!) doesn't mean that we're all going to turn into nazis and open death camps!!!! :clap: :clap: GET REAL HERE!!!
you know this smacks of pro-life fanaticism... i think what is really getting people incensed is that they are sterilizing her-- the ultimate birth control. ooooohh, think of all those babies she could have, and we are taking that away from her-- SO unfair! the same people who are up in arms over this are the ones who would insist that if she got raped by the hospital janitor, they should allow her have the baby!! SICK if you ask me.

whattaya wanna bet-- those same *advertiser censored* that gathered around terri shiavo's hospital are going to take their circus of absurdity over to this family's house and make their life a living hell. that's what they get for being honest, progressive-thinking individuals and trying to educate people, in the new dark ages.. sheesh.

Hi reb. I sure hope people don't start giving this family a hard time about this. Life is difficult enough for them as it is.

For the record, I'm pro-life but never thought I would be making a decision like the one I will probably make. We aren't all *advertiser censored*!

 

[Taximom]

Isn't that what killed Superman?

Hi czech, I tried to pm you back but your inbox was full. Speaking of which, I better get to cleaning out mine.