Keeping severly disabled kids small????

[MagicalMom]

This really shocked me!

http://www.msnbc.msn.com/id/15517226/

I mean really shocked me.

 

[twinklebug]

This really shocked me!

http://www.msnbc.msn.com/id/15517226/

I mean really shocked me.

It's sad that anyone should be so disabled, but you know, I think I can see where the parents are coming from on this. They know that THEY are the best caretakers for their daughter, they love her and will do their absolute best for her, not some disabled adult home. They only way they'd be able to keep her when she's older is if she's still small enough to handle.

It's wrong, but it's right too. It all depends on which side of the fence you are looking at it from.

 

[themarquis]

this child has the mental status of an infant. Stunting her growth and removing her ovaries, while awful-sounding, would not affect her. Putting her in an institution away from loving family members because she was too big to care for, *would* affect her. I know it sounds terrible ... I kind of had the same reaction when first reading it ... but in terms of what is best for the child ... well maybe it is best.

 

[MagicalMom]

Now that I've let it sink in I can see their point. My first thought was complete & udder shock though. Lord knows it will difficult enough transferring her & caring for her without having to worry about her menstrating. Such as sad choice to have to make.

 

[sha_lyn]

I agree with the 2 above posters. while at first it sounds outrageous, if it keeps the child in familiar surrounds for a longer period of time, then it likely in the the best interest of the child.

 

[robinb]

I agree with everyone else. This child will remain a child for the remainder of her life, growth arresting therapy or not. If that therapy keeps that little girl with her loving family, then who am I to complain?

 

[poohandwendy]

That is just tragic and sad. I can't judge the parents in any way, it's a shame they even have to think about this sort of thing.

 

[SandraVB79]

I am sure this must have been a hard decision for the parents to make.
They had their reasons to do what they did and still do, because now they can still care for their daughter.

They could have just as well put her in a home for disabled people, pay for her care, and don't have to be involved for the rest. But they chose for a treatment, so that they could care for her as long as possible. I think that's a very brave decision, a difficult decision and they'll need a lot of strength and energy for what they are doing now.

 

[ilovepcot]

I can certainly understand parents choosing to do this. I lost count of the pediatric patients I saw sent to skilled nursing facilities (nursing homes for the elderly) because they simply became too heavy to be cared for in the home. Can you imagine the heartbreak for parents visiting their child in such a facility, especially when they *want more than anything* to continue providing care in the home? How frightened and powerless they must feel!

 

[ducklite]

Given that her mental capacity was never going to change, I think it was the most loving thing her parents could possibly do for her in order to guarantee being able to manage her care in their home for many years to come.

It sounds to me like they are loving, caring parents who made an ethical desciion with the aide of a team of doctors who had to defend their proposed actions to an impartial ethical board who agreed that it was an appropriate course of treatment.

In all honesty it's a shame that all parents aren't as concerned about the welfare of their children.

Anne

 

[nealymouse]

If it were me, I would also do it. I agree 100% with the parents.

 

[Megan's Mom]

This is from a parent on the same side of the fence as those parents and I wish we had had that option. Megan is now 70+ pounds and it is getting difficult to carry and move about. My parents help out a lot with her and as they age it is also becoming difficult for them. We are already doing some things to help with periods and such. I feel that this kind of treatment is too late for us but if it helps others then I say go for it.

 

[LJC1861]

The most important sentence in the article was one that was most probably overlooked by some. It read "...reviewed by an ethics committee." In these decisions, parents cannot act alone and must have approval from a Judge that allows them to take such radical steps for their child. As other posts have mentioned the onset of puberty can be traumatic for children with severe disabilities, particularly the girls. I work with teenagers with Autism and 2 of our girls have had hysterectomies. This was not an easy decision for the parents, and not an easy process to go through and it should not be easy for a reason. Our agency has a human rights committee that these parents had to petition, and then they had to appear before family court and present the case and their reasons for making such a decision. There was a period of time when all young girls with any kind of disability were routinely sterilized, especially in the days of the large institutions and this was a travesty. The system is in place for a reason.

It sounds like this family genuinely loves their daughter and sought the assistance of medical and legal professionals to make this decision. It allows them to care for their daughter at home. I work in a group home, and a good one at that and I know that all of our parents wish that they could continue to care for their children at home. The fact of the matter is that as good as any group home is, it is not HOME. I personally am all for any decision, made with the proper advice and counsel that allows parents to keep their children at home as long as they can. After that, I will do everything in my power to care for their children as if they were my own in the group home.

There are many sides to this story and many facets to this decision. I applaud this family for loving their daughter SO much and for wanting to care for her at home.

Linda

 

[lkjasd]

udder shock

Very interesting thread and I don't mean to hijack it, but I read this and pictured a doctor using shock paddles on a cow and now I can't get the picture out of my head.

Back to the discussion.

 

[Serena]

It was obviously a difficult decision. And not one they were allowed to make on their own.
I'm sure it was a heartbreaking one as well.

 

[Cindy B]

Working with mentally/disabled students of all shapes and sizes, I have a few things to say about this.

I remember one student who is now in high school. The student is 17. This student is probably about 160 lbs, can not speak, barely signs,not potty trained and can not walk independently. (but not confined medically to a wheelchairs) An adult stroller /modified wagon is used to get around school, which is public middle/high school. Instructionally, there is a special ed teacher for the student and another classmates with similiar disablities as well as two assistants and a nurse. I've taught in that classroom, and while physically straining, it was rewarding.

As the students age, there are some things they are more capable of. I have less severly disabled students that are now working in jobs, such as sorting clothes at Goodwill or bagger/janitor at a grocery store.

To keep a student small, its to me unethical. A person ages with disabilities or not. I've seen many adult disabled students still living at home, large size or not. Some of my kids are very large--way larger than me and if taught well there isn't a problem.

Disabled teens are a productive part of my local area. These students work, do community service hourse for school shredding papers and distributing mail--yes even that severly disabled student that I spoke about in the first paragraph has a job at the school shredding papers for the office. These teens upon graduation get jobs either at the supermarket, a warehouse or working in a trade. They know how to survive, even if they stay at home with thier own families.

I can't say there aren't problems with disabled teens/young adults. There is a whole host of delimmas that occur. Items such as hygiene, shaving and bathing is a concern and is dealt with in hygiene curriculum. Dating and intitmate relationships are a concern as well. Some female studnets would mistake attention from male students (who were just being nice and polite) as they want to go out with them. Some try to be extrememly promiscious or are promiscious and do wind up pregnant. That has happened.

I'm just saying that this child that the OP is speaking about is going to be small forever just for the convienence of her parents. There are adult sized items that can be used. Teen/adult disabled students can become productive members of the society --no matter how disabled they are. I'm amazed constantly on how many disabled kids in my area are doing amazing things... formerly nonverbal kids speak, non motivated students work at a paying job and some move out on their own in an apartment/townhouse.


With training and proper education, mental capacity can change. I can't tell you that when I first saw that student in the opening paragraph I thought wow.. this is a severe case. This student can't go to the bathroom, eating is an issue, walking is an issue, she can't speak, barely signs (uses sign instead of talking) and can barely hold a pencil...how can I educate her to become a productive member of our society? I followed the lead that was given to me. This student can work--she works in the office shredding paper for the secretaries. Even with all these disablitilies, she can be productive. I don't think anyone would have thought that she could do a function. Even as an educator, I thought the student would be better off in an institution at first.. (It kills me to say that, because I didn't know how to help the student at first. )

To rob a person of unknown capabilities just seems wrong to me. But as I see studnets grow change and learn, I see that even in very very very severe cases productivity can occur.

 

[Barb D]

I can understand the decision these parents made, but wanted to add that I have friends who chose to institutionalize their daughter. This, too, was an extremely difficult decision to make, and was made in the best interest of their daughter who needed 24 hour care. Different decisions for different situations, but neither of them the only right or wrong decision.

 

[The Mystery Machine]

I have my 10yodd on growth hormone 'to grow' and I run into alot of flack for that. I try to explain that it is for a growth hormone deficiency and it is hard for people to understand that.
They will say well so what if she is short? However it is everything in the body including skull & skeletal development, weight, internal organs & puberty.

As far as the parents injecting to stop growth, I can see that. In my dd's GS troop, there is a wheelchair bound girl who is on the fence with hip surgery. She is in alot of pain off & on and they are trying every known treatment to avoid surgery.

I understand both sides, but I will have to trust the judgement of the parents and the doctors. It isn't easy making a "new decision" using hormones. Alot of people do not like it.

 

[minkydog]

Working with mentally/disabled students of all shapes and sizes, I have a few things to say about this.

I remember one student who is now in high school. The student is 17. This student is probably about 160 lbs, can not speak, barely signs,not potty trained and can not walk independently. (but not confined medically to a wheelchairs) An adult stroller /modified wagon is used to get around school, which is public middle/high school. Instructionally, there is a special ed teacher for the student and another classmates with similiar disablities as well as two assistants and a nurse. I've taught in that classroom, and while physically straining, it was rewarding.

As the students age, there are some things they are more capable of. I have less severly disabled students that are now working in jobs, such as sorting clothes at Goodwill or bagger/janitor at a grocery store.

To keep a student small, its to me unethical. A person ages with disabilities or not. I've seen many adult disabled students still living at home, large size or not. Some of my kids are very large--way larger than me and if taught well there isn't a problem.

Disabled teens are a productive part of my local area. These students work, do community service hourse for school shredding papers and distributing mail--yes even that severly disabled student that I spoke about in the first paragraph has a job at the school shredding papers for the office. These teens upon graduation get jobs either at the supermarket, a warehouse or working in a trade. They know how to survive, even if they stay at home with thier own families.

I can't say there aren't problems with disabled teens/young adults. There is a whole host of delimmas that occur. Items such as hygiene, shaving and bathing is a concern and is dealt with in hygiene curriculum. Dating and intitmate relationships are a concern as well. Some female studnets would mistake attention from male students (who were just being nice and polite) as they want to go out with them. Some try to be extrememly promiscious or are promiscious and do wind up pregnant. That has happened.

I'm just saying that this child that the OP is speaking about is going to be small forever just for the convienence of her parents. There are adult sized items that can be used. Teen/adult disabled students can become productive members of the society --no matter how disabled they are. I'm amazed constantly on how many disabled kids in my area are doing amazing things... formerly nonverbal kids speak, non motivated students work at a paying job and some move out on their own in an apartment/townhouse.


With training and proper education, mental capacity can change. I can't tell you that when I first saw that student in the opening paragraph I thought wow.. this is a severe case. This student can't go to the bathroom, eating is an issue, walking is an issue, she can't speak, barely signs (uses sign instead of talking) and can barely hold a pencil...how can I educate her to become a productive member of our society? I followed the lead that was given to me. This student can work--she works in the office shredding paper for the secretaries. Even with all these disablitilies, she can be productive. I don't think anyone would have thought that she could do a function. Even as an educator, I thought the student would be better off in an institution at first.. (It kills me to say that, because I didn't know how to help the student at first. )

To rob a person of unknown capabilities just seems wrong to me. But as I see studnets grow change and learn, I see that even in very very very severe cases productivity can occur.

I really have to agree with this. Im not a fan of medicating my children on a good day, let alone for my own convenience. Hormones are not benign drugs; they affect the whole body, a decision not to be taken lightly. I'm sure these parents thought long and hard before they made such a decision, and I hope it works well for them. I just don't think I would do it.

I have an 11yo severely mentally handicapped & autistic son. He is vision-impaired, hearing-impaired, non-verbal and has seizures, too.He has the mental capacity of a 1yo. We measured him yesterday--he is nearly 5ft tall and 100lbs.He's gonna be a big boy--all the men in my family are over 6'2". He can walk now, but a lot of kids with his disability stop walking when they hit puberty, so there is a possibility that we will face that, too.

Even with all this disabilities, I don't think I would limit is size with drugs. He is who he is. I'm 50. In 10 yrs he'll be 21 and I'll be 60. I know I'll need help with him by then--I almost need help with him now. If we need to hire someone to help us bath him, we will. If we need to acquire a special lift to get him in and out of bed, we will. If we need to sell the house and buy one with handicapped features, we will. And if moving him to a special needs group home fits our situation better, then we will do that.

I can't predict the future, so I keep my options open. All I know is that when my boy was little he didn't look like he would add up to much. And yet he as become an integral part of our family. He enjoys his life immensely. If he gets to be 6ft tall(or more!) I"m sure he will be a handsome boy. We'll find a way to deal with the problems just like we would any other problem.

 

[MaryAnnDVC]

Teen/adult disabled students can become productive members of the society --no matter how disabled they are.

That's just not true for EVERY disabled person. There isn't going to be a mass growth-stunting campaign against disabled children "for the convenience of the parents" as you so unfortunately put it (they hardly sound like parents who don't want to be "inconvenienced" ); it sounds like this was well thought out and discussed by the parents and a medical ethics committee. I'm sure any future situations will be as well, and it will be done in the most severe cases, not necessarily the people you described.