Keeping severly disabled kids small????

[MaryAnnDVC]

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 don't think anyone will take it lightly, nor can any parent make the decision arbitrarily. And no one, such as yourself, would be forced into it either. Not every parent of a handicapped child is going to feel the same about their care and who should give it.

 

[minkydog]

I don't think anyone will take it lightly, nor can any parent make the decision arbitrarily. And no one, such as yourself, would be forced into it either. Not every parent of a handicapped child is going to feel the same about their care and who should give it.

Very true, and if I had a girl perhaps i would feel differently(that sounds terribly old-school, doens't it ). It was only in the last 30yrs that mentally handicapped individuals won the right to NOT be sterilized--it just about takes an act of congress to perform sterilization today, which is as it should be. I have a dear friend who had to move heaven and earth to get her 16yo very handicapped daughter on permanent birth control. They dont' allow her to have periods at all. The daughter is more functional than my son and she is quite interested in babies--yowsa! Bad combination

 

[Cindy B]

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.

It all depends on what your idea of productivity is. Productive could mean working in a paid position, or it could mean getting dressed independently. I never in a million years would have thought that this severely disabled student could perform a job function, this student can.

In fact the parents of this student didn't want to institutionalize her because they stated that she is able to do some things so public school with modifications .

To me I read that the parents want her to stay small... for who's benefit? The parents/family.

 

[mickeyfan2]

Seeing the reasons the parents did this I agree with them. I know somebody who works with teen mentally handicapped people who live in a teen-adult group home. Based on what I know that some of the teens do this does make sense. After puberty they are much more difficult to hand, both size and from hormons that they can't control.

 

[roseprincess]

This story saddens and upsets me. Like the previous poster said, are the parents the ones to benefit here? What's wrong instead of sterilizing the child, to have her on birth control when she's a teenager? Whether she will be living at home or at a children's home? I know there is a small percentage(rare) of rapes occuring in an institution setting. I had heard of one very disabled girl that was raped over a yr ago, in an institution. She ended up pregnant and did deliver. I think her mom is taking care of the baby. I'm guessing maybe the parents of this girl in the article is trying to avoid that situation. I can understand that part of the situation.
I know for me, I couldn't make that decision for sterilization for my daughter.

I do hope everything works well for the girl in the article.

 

[JunieJay]

My husband's sister has a child who is severely disabled, she is now in her 40s and requires round the clock care. She is a big woman, too, close to 6 foot tall and very big boned....while she isn't obese, she probably weighs about 200 pounds. She is cared for by her mother and father, who are now close to 60. I worry how they will take care of her when they are older, even now at 58 my SIL has had problems with her back that I don't think she would have if she didn't have to care for her daughter's basic needs and moving her from one place to the other.

I can see why someone would make this decision. I can also see why someone wouldn't. This is one of those areas where "walk in mile in their shoes" applies.....couldn't even begin to judge a parent facing this sort of decision, the only thing I have for them is admiration and empathy.

 

[tkd lisa]

One of my mom's best friends (they were in nursing school together) had a child who sounds very similar to this one. In fact, she was about 2 months older than I am.

Her name was Mary Jane, and I always remember going to their house, and Mary Jane was laying on the loveseat in their living room. She always ate baby food because she would have choked on solid food (she had teeth, but couldn't understand how to chew). She was in diapers her whole life. I know that she did menstruate, because I distinctly remember that being something that her mom had to deal with.

I would say that Mary Jane probably weighed about 60 pounds, and would have been about 4 to 4 1/2 feet tall. Her mom probably only weighed 115 pounds herself, and was about 5 feet tall. And she took care of her pretty much single handedly. Her dad would carry Mary Jane out to the living room in the morning, but her mom took care of all the diaper changes during the day. I think they did baths when Dad was there to help Mom lift Mary Jane in and out of the tub.

She ended up passing away just after I graduated from high school, so she would have been 18. I will NEVER forget the love that family shared for their child. They never acted like they made big sacrifices. That was just what families did. It really made an impact on me. BTW, they did have another child who didn't have disabilities. She was about 2 years younger.

 

[Cindy B]

Seeing the reasons the parents did this I agree with them. I know somebody who works with teen mentally handicapped people who live in a teen-adult group home. Based on what I know that some of the teens do this does make sense. After puberty they are much more difficult to hand, both size and from hormons that they can't control.

What I am saying is that handicapped adults/teens can be "handled". With proper training for the adult and the student, it can be done. It all has to do with many factors, such as type of program, type of student, type of disability, and educational programs in place.

Some of these studnets are way larger than me. One of my first students when I was inexperienced was a 6 foot 4 250 pound plus 7th, yes 7th grader. He was certainly imposing, but I didn't let his size scare me. Did I have to restrain him? No.

I work with severely disabled students a lot. Have I had to restrain due to out of control behavior? Yes. Have I gotten hit and bitten? Yes. In fact that severly disabled student I spoke about bit me when we were transporting her from the bus to school. Have I gotten sweared at? So many times I can't count. Do I let that bother me? No.

I know that some of these behaviors are disability based. A non verbal student gets frustrated easily and will bite because of lack of communication skills. An emotionally/behaviorally based disability child (I hate the term emtionally disturbed) will lash out verbally and physically because of impulse behavior issues. You have to understand the disability to understand the studnet behavior. Once you understand the child/disability, you will less to fear as they age.

 

[Spinning]

I have so many different thoughts on this issue! Not even sure where to begin.
I worked for 6 years in a large facitlity for the physically and mentally impaired. I saw all ranges. And unfortunately there are children who turn into adults that will never ever be able to shread paper or be able to be in any type of productive position. Even in a sheltered work shop. They will be dependent for everything except breathing. And even then some require assistance. Then of course there are people who have many disablitites but can do simple activities and with the help of a job coach can complete tasks.
I also worked 5 years in an early intervention program. But we had kids in the school up to 21 and then a sheltered workshop/day care. Again....all different levels. Some of the older kids/adults were truly just being housed and care for.

I always felt so bad for the parents of girls who were funtioning at 3 months with scatterings to a 18 months. Which meant they were walking but really had no clue. These girls would mature and get their periods. Many would place their hands where you would want them...Imagine that during their cycle? even with overals on they found a way. As for stunting size....I can see how that could be a plus but could also be a really bad thing. Sure there are all types of lifts, adaptations, chairs, shower chairs, hospital beds, car lifts, ramps.....the list goes on and on, but as the child ages so does the adult who cares for them. How does a 70 year old lift 40 year old who weighs as much of them or more? Or even the CP adult with spastic movements who stays very thin but becomes very long with constant moving of the arms and legs during transfers. (and has is funtioning below 12 months)I am not talking about the CP adult who has no cognitive impairment.
I think the family and the doctors need to do what is best for the child.
Many of the sever children/ teens never make it into public schools.
So after a very long post....I feel for the family and hope they made the right choices and can always care for their DD. I have no idea what I would do if I was in that situation.

 

[MaryAnnDVC]

I have so many different thoughts on this issue! Not even sure where to begin.
I worked for 6 years in a large facitlity for the physically and mentally impaired. I saw all ranges. And unfortunately there are children who turn into adults that will never ever be able to shread paper or be able to be in any type of productive position. Even in a sheltered work shop. They will be dependent for everything except breathing. And even then some require assistance. Then of course there are people who have many disablitites but can do simple activities and with the help of a job coach can complete tasks.
I also worked 5 years in an early intervention program. But we had kids in the school up to 21 and then a sheltered workshop/day care. Again....all different levels. Some of the older kids/adults were truly just being housed and care for.

I always felt so bad for the parents of girls who were funtioning at 3 months with scatterings to a 18 months. Which meant they were walking but really had no clue. These girls would mature and get their periods. Many would place their hands where you would want them...Imagine that during their cycle? even with overals on they found a way. As for stunting size....I can see how that could be a plus but could also be a really bad thing. Sure there are all types of lifts, adaptations, chairs, shower chairs, hospital beds, car lifts, ramps.....the list goes on and on, but as the child ages so does the adult who cares for them. How does a 70 year old lift 40 year old who weighs as much of them or more? Or even the CP adult with spastic movements who stays very thin but becomes very long with constant moving of the arms and legs during transfers. (and has is funtioning below 12 months)I am not talking about the CP adult who has no cognitive impairment.
I think the family and the doctors need to do what is best for the child.
Many of the sever children/ teens never make it into public schools.
So after a very long post....I feel for the family and hope they made the right choices and can always care for their DD. I have no idea what I would do if I was in that situation.

Great post.

 

[janette]

One of my nephews is severely disabled, he is 11yo but functions at about 3mths and isn't expected to improve. They have had to make this type of decision but it was whether to give him growth hormones. He has never grown much and is very small for his age. This has made it easier to keep him at home and they've been able to get by with limited special equipment. The Dr's are now wanting him on a growth hormone to improve his bone mass. His parents biggest concern is that he would grow too big for them to care for at home. It is very physical to care for him and an adult size would require special equipment for almost every aspect of their lives. Yes it is more for their benefit to keep the care easy but ultimately he is the one that will reap the benefit of them not having to face the decision of a nursing home.

I believe they've decided to let them use the growth hormone for a time but they will stop it if it starts causing significant growth. The other side of it is that there are no guarantees. Growth hormone therapy is new so the Dr's can't give them any definite answers just theory.

 

[shirleyb]

I have no problems with this, because if you think about parents truly loving their child and wanting to care for him/her, this is probably the only way.

I have a 14 yo DS that is 6'4" and 250 lbs. Imagine if I had to try to physically meet his needs? There would be no way, and I am not tiny myself.

 

[klmall]

This is such a difficult decision and I think they have made it in a careful, considered manner with the child's best interests in mind. God bless them!

 

[phillybeth]

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.

This child will NEVER advance past an infant's abilities. Having lived with a severely handicapped child, I suggest you count your blessings that you work with kids that have the possibility of advancement. Not all are that lucky.

My brother was much like what this little girl must be- so severely brain damaged/handicapped that there is NO possibility of any sort of advancement, development, or improvement. In a case like that, I am 100% for the parents doing whatever they need to do to care for their child at home.

 

[noodleknitter]

It isn't selfish to want your child to continue to receive the best care in a loving family for as long as possible. Selfish would be walking away.

 

[Planogirl]

I think it's a bit unfair to judge these parents too harshly. Only they and others involved with this situation really know what they are dealing with and if the child will never be able to advance, perhaps this is the best decision for everyone.

I don't know, I'm feeling incredibly blessed not to have to make such decisions!

 

[poohandwendy]

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.

Well, they aren't giving her a lobotomy, so I can't understand how you can call it robbing her of unknown capabilities. Maybe she will end up being productive, like you say. Ok, well then she would be small and productive.

My point is, you cannot say you know what will happen whether they give her these meds or not. In effect, you are saying she has promise now (even though her own doctors and a medical ethics committee disagree)...but she doesn't have any promise if she takes these meds. You couldn't know that about her, no matter what your experiences are. If a miracle is possible, it is still possible if she takes these meds.

They are saying that doing this will improve her quality of life. I think they have a better grasp on this particular casee than any of us could have.

 

[Hedy]

Very true, and if I had a girl perhaps i would feel differently(that sounds terribly old-school, doens't it ). It was only in the last 30yrs that mentally handicapped individuals won the right to NOT be sterilized--it just about takes an act of congress to perform sterilization today, which is as it should be. I have a dear friend who had to move heaven and earth to get her 16yo very handicapped daughter on permanent birth control. They dont' allow her to have periods at all. The daughter is more functional than my son and she is quite interested in babies--yowsa! Bad combination

Agreed. I know parents of disabled children go through a lot, but this smacks waay too much of eigenics for me to be able to support it.

 

[phillybeth]

Agreed. I know parents of disabled children go through a lot, but this smacks waay too much of eigenics for me to be able to support it.

The only way this child could ever get pregnant is if someone assaulted her- she does not have the mental capacity to consent to sex. I've heard horror stories of physically and/or mentally disabled women (and men) being assaulted by caretakers or nursing home staff- in most of the cases the assaults go undetected until the women gets pregnant and is VERY far along.

 

[Uncle Remus]

Quote:JunieJay:
I can see why someone would make this decision. I can also see why someone wouldn't. This is one of those areas where "walk in mile in their shoes" applies.....couldn't even begin to judge a parent facing this sort of decision, the only thing I have for them is admiration and empathy.

I think it's a bit unfair to judge these parents too harshly. Only they and others involved with this situation really know what they are dealing with and if the child will never be able to advance, perhaps this is the best decision for everyone.

I don't know, I'm feeling incredibly blessed not to have to make such decisions!