Keeping severly disabled kids small????

[themarquis]

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

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'm completely in agreement with you that many developmentally disabled kids have a lot to give to their families/commuities and can be productive members of society, etc. However, the original article is about a disabled child who has the mental status of an infant. I.e., she can smile, make eye contact, make baby sounds, etc, but no more than that. In her particular case, using drugs to keep her small is not going to stunt her progress. I think the article is clear that sadly, for her, there will be no or very little progress. That is certainly not the case for most disabled children, and I don't think anyone on this thread would advocate radical growth stunting treatment for most disabled children!! That would certainly be unethical!!

Several posters have also mentioned the hysterectomy issue and equated it with eugenics. I think maybe there is some misunderstanding here of why a hysterectomy was used in this case -- basically, since a hysterectomy prevents a persons body from forming many hormones, including those responsible for growth, the hysterectomy is merely used to stunt growth. It is not used in this case for fear the child will become pregnant, get raped, and/or have periods that are difficult for the parents to manage, as other posters have mentioned. Medically, it is merely an extreme treatment to limit growth.

 

[tiggger1]

I have also worked with severely disabled children and teens and I can see how this would work for SOME children...

I worked with a girl that is in a wheelchair who was severly disabled. She was 16 but was more of a newborn... she needed to be fed liquids through a tube, wore diapers. She was blind and deaf and was basically in all terms a vegetable ( she had no real brain activity,didnt respond to any stimuli) She was a big girl weighing about 200 pounds. We needed at least 2 people to change her and dress her..and because she was bigger than her mom, she was placed in a nursing home because her parents couldnt care for her correctly. Before the nursing home she would come to camp unbathed and unfortunetly would reek whenever she had her period..(we had onstaff nurses who would change her then!) because her mother couldnt bath her and only could get a nurse to come to the house twice a month! The mother stated many times she wished she was smaller because then she could care for her...

We also would get a ton of girls who would be on medicines to either stop their periods or medicine to control the cramps..

 

[poohandwendy]

I'm completely in agreement with you that many developmentally disabled kids have a lot to give to their families/commuities and can be productive members of society, etc. However, the original article is about a disabled child who has the mental status of an infant. I.e., she can smile, make eye contact, make baby sounds, etc, but no more than that. In her particular case, using drugs to keep her small is not going to stunt her progress. I think the article is clear that sadly, for her, there will be no or very little progress. That is certainly not the case for most disabled children, and I don't think anyone on this thread would advocate radical growth stunting treatment for most disabled children!! That would certainly be unethical!!

Several posters have also mentioned the hysterectomy issue and equated it with eugenics. I think maybe there is some misunderstanding here of why a hysterectomy was used in this case -- basically, since a hysterectomy prevents a persons body from forming many hormones, including those responsible for growth, the hysterectomy is merely used to stunt growth. It is not used in this case for fear the child will become pregnant, get raped, and/or have periods that are difficult for the parents to manage, as other posters have mentioned. Medically, it is merely an extreme treatment to limit growth.

Well said, you make really great points! I think in extreme cases like this, it is a matter of saying "Ok, this is what we are dealing with, what it the best way to make it work so that the girl can live in the best possible circumstances (with her parents)?"

 

[themarquis]

Well said, you make really great points! I think in extreme cases like this, it is a matter of saying "Ok, this is what we are dealing with, what it the best way to make it work so that the girl can live in the best possible circumstances (with her parents)?"

Yes, definitely.... and if there are two options 1) to put a child in a nursing home and not give her treatments to stunt her growth or 2) to keep her at home in a loving family environment and give her these treatments, then I think if a family is trying to decide what will be best for their child, option 2 will often be best. In a case like this where a child is severely handicapped, there are going to be a lot of hard choices, all of which have drawbacks, sadly.

To judge a family harshly for making such a heartbreaking choice is cruel. They are attempting to weigh what is in the best interest of their much-loved child, whether or not everyone in the world is going to agree with them. There are probably plenty of families out there who would not even bother trying to weigh difficult options and would just warehouse their child so that they would not have to deal with him/her. *Those* are the familes we should be judging, not this one!

 

[MagicalMom]

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.

Haaaaaaaaaa! I didn't even notice until you pointed it out! Think I spent too much time on a dairy farm as a child!

 

[SueM in MN]

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

Thank you for this post.
I agree with what you wrote and want to re-emphasize that these parents did not make this decision alone. They had to make this very private decision in a very public way (after all, it made the news).
And, they didn't make it alone, it was made in conjunction with an ethics committee, which meant there were doctors, social workers, and someone assigned to the best interest of the child.
I am glad I didn't have to think about this; my youngest DD is disabled, but she is naturally small (luckily, she apparently got her size genes from my mother in law). When she got to be 5 feet tall and about 86 pounds, I jokingly told her to stop growing because she was the perfect size. Lucky for us, she did stop, because she is the perfect size for me to transfer (I can even still lift her, but know that won't continue forever).
She has friends who are quite a bit larger - one young lady is almost 5 foot 9 (and her mom is only about 5 foot 4). Another is about 150 pounds (not overweight for her size) and can't walk or stand. Those extra pounds mean that her family needs a lot of equipment to care for her and she will probably at some time end up in a group living situation (whether she wants to or not).

 

[Cindy B]

I think what people are failing to realize is that with training, productivity can occur. That student that shreds, well, its not like they can get up walk to the office, do the work quickly and leave. She is on about a 2 and at the most 3 year old level.

She gets wheeled to her work station by the teacher or 1:1 paraprofessional or nurse. (Remember she's in an adult size stroller) She does not have the coordination for a powerchair or the family doesn't want to student to have a chair. The student shreds with constant instruction for about 10 minutes and then she needs a break.

Our public school system is very in tune for special education students--primarily the severely disabled. 1 out of 4 new students in our district is classified. our school district is written up in journals and wrightslaw.org about being an excellent special education public school. That is why there are programs in a public school where anywhere else it would be residential or group home setting. One middle school setting serves seven self contained multigrade multiage classrooms with a range of needs from severely disabled, autistic, vision/hearing impaired with developmental delays, behavior mod class, etc. The high school has an excellent school to work transition program that has been written up in many articles. I am actually a certified job coach, so it is my job to beleive that all students can be productive in some way. Maybe its not a paying job, but its more of personal productivity.

I also do verbal behavior with non verbal autistic students. This verbal behavior is one of the hardest jobs I have ever done. To see a non verbal student after a 2 hour intensive session utter four words (or sounds that were close to words) that is productivity. Productivity is not managed by workhours, or even job related things but productivity for everyone. For one student, productivity was being able to stand with major assistance out of her wheelchair for 20 seconds.

Mind you, I've lifted kids out of chairs so they can do bathroom activities, I've lifted people out of chairs for pt or ot. I pull, push and secure chairs. I swing them in an adult swing in the classroom.

The patient/student in the OP just seems to be given up. So many so called experts gave up on my students ages ago==you should see notes its enough to make you cry. But these students amaze me every day.. and are doing great.
To me to keep a student small for convenience (it still looks like convenience to me,) seems to prevent so much potential that can occur.

As for sterilization/permanent birth control, that is a hard call to make. I had a pregnant student last year who was developmentally delayed. She mistook polite attention for intimate attention and was really "ready for boys".

We had dating in our severly disabled class. Two students who were in the work study program dated after school. As far as all the teachers/adults/job coaches noted it was very sweet and innocent. However, this is a situation where adults need to let these students become adults. These students were both over 18 and it was consensual. the school to work program in our high school goes to age 21 so we have up to 21 year olds in the high school program.

 

[raterfly]

none of us really know what we would do if put in a situation like this. I can see why the parents have decided to do this and that in their opinion it is what is best for their child. In the end it is them that have to live with their decision.

 

[janette]

I think what people are failing to realize is that with training, productivity can occur. That student that shreds, well, its not like they can get up walk to the office, do the work quickly and leave. She is on about a 2 and at the most 3 year old level.

But you must also realize that some will never have any productivity.

It would be thrilling for my nephew to just make eye contact and acknowledge his care givers. I'm sure he recognizes his mom and he does seem to respond to her voice but it is not a direct response. She'd be thrilled for a smile that was obviously meant for her. He makes no deliberate movements. I said he functioned a 3mth level but that is a guess and he has no muscle control. He'll never hold something in his hands, stand without assistance (they use a stander at school to give him the practice of being upright - basically a brace that holds him upright). The care required for him will always be that of a very young infant with the exception that he's bigger and bodily functions are a little more mature so he requires less diapers.

His small stature is a blessing and has made it easier for his care givers. If a family chooses to medically make that happen so their child can be with them instead of a nursing home I think they are doing what they need to for them and their family.

 

[phillybeth]

I think what people are failing to realize is that with training, productivity can occur. That student that shreds, well, its not like they can get up walk to the office, do the work quickly and leave. She is on about a 2 and at the most 3 year old level.

There's a big difference between a 3 year old and a 3 month old. How can you train a 3 month old, or someone with the mental capacity of a 3 month old, to do anything? Most 3 month olds can barely hold their heads up, much less roll over, sit up, or understand language to the point where they can respond to verbal instructions.

No one is saying any mentally of physically disabled person should be kept small for convienience's sake. But in some limited cases, it is the best choice to keep a child at home in a loving family.

 

[poohandwendy]

Cindy B,

Obviously, in some cases no amount of training would be result in any level of productivity. From the article stated, this child cannot move at all without assistance. This is not a decision that comes easy or is made without very careful consideration. It wasn't made by only the parents, it was made with the input of medical doctors and an ethics committee.

 

[twojo21]

i agree with op im shocked & feel this is wrong. however i feel a parent has rights to thier children more than the government but eventually the parents are going to do die & they need to make arrangements for her care after that. adult homes, alternative care & parental rights is a big issue as disabled individuals turn 18 & their parents are faced with guardianship & big brother knows best. handicapped individuals can lead fulfilling happy lives given the chance, i just hope this surgery, surgeon & parents of this girl make others think twice either way.

cure autism now!
pro stem cell.

 

[Amlee]

I have an older cousin(36) with Downs, I won't say her case is sever, neither will I say it's mild. She attended a school set up here, that got her through school and taught her a trade. They then went on and found her a job. While she was a teenager she met a boy in her school also with Downs. With close supervison from family they dated. After they got out of high school and had started their jobs, they decided they wanted to live together. My cousin is not able and will never be able to live by herself. She is not able to follow daily dosage of meds and has a hard time in remembering to turn off the stove. My understanding is her boyfriend is close to the same as she is. The four parents met up with them and agreed to let them live together if my cousin would have a hysterectomy. They were explained in detail as to how things would be. My cousin agreed to this and had it done. Her parents set them up in a house next to them. They have lived this way for several years now and are as happy as they can be.

I don't see it as wrong at all. She is having the time of her life and living it to her fullest. A child would be far beyond what either one of them could handle.

As for the little girl in question, who is it hurting? The little girl? Will she even know? More important she will be able to stay in a place she knows (if that is possible) around people that she is familiar with (again if possible).

 

[poohandwendy]

Another important point mentioned in the article (in addition to the fact that a medical ethics board reviewed this case):

After extensive evaluation, the combined opinion of a team of specialists is that the child will have no significant neurologic or cognitive improvements.

 

[Hedy]

Another important point mentioned in the article (in addition to the fact that a medical ethics board reviewed this case):

Sorry, the more I'm reading about this case, the more I'm convined that the parents are selfish and practicing eugenics on their daughter.
This is a blantant human rights violation, and should be dealt with accordingly.

 

[Mickey'snewestfan]

To me the solution to this is simple -- our society needs to prioritize finding the resources to make sure that children and adults with disabilities are able to get the support they need to live with quality of life in the environment that is best for them (e.g. at home, in a group home, in a foster situation), not the situation that is most convenient or least inexpensive for our government. Families should never have to make a choice between their child's hygeine or safety, or their own health and an institution -- but the fact is that in this country they do every day.

Until this kind of support is available, however, I can't fault these parents for their choice. Among two unfair and terrible options they chose the one that will in the end hurt their daughter less.

As for the "productivity" issue I would argue that this little girl is already a contributing member of society -- when she smiles at her mom and warms her heart, when she gives and receives love she is contributing. If this is the only way she is able to contribute it's enough. If she ends up being separated by her family because they don't have the resources to care for her as she grows she's losing the opportunity to use the few gifts she has been given.

 

[Mono~rail]

Until this kind of support is available, however, I can't fault these parents for their choice. Among two unfair and terrible options they chose the one that will in the end hurt their daughter less.

As for the "productivity" issue I would argue that this little girl is already a contributing member of society -- when she smiles at her mom and warms her heart, when she gives and receives love she is contributing. If this is the only way she is able to contribute it's enough. If she ends up being separated by her family because they don't have the resources to care for her as she grows she's losing the opportunity to use the few gifts she has been given.

What a wonderful and well thought out post!

 

[themarquis]

Sorry, the more I'm reading about this case, the more I'm convined that the parents are selfish and practicing eugenics on their daughter.
This is a blantant human rights violation, and should be dealt with accordingly.

I mentioned this before, but I'll say it agian. This is not a case of eugenics!!

Eugenics is when people who are not considered "fit enough" or "good enough" to have a child are sterilized. There was a time when the mentally and physically disabled, as well as poor and nonwhite women, were routinely sterilized against their will or coercively, for the purpose of "improving" the "human race" (i.e., the thought was that if "better" people had more children and the less "worthy" had fewer or none, evolution would eventually result in an improved human race). Eugenics was scientifically misguided and it was ethically horiffic. I will agree with you completely on that ... It unfortunately does continue to happen today with the mentally handicapped.

However, this is not a case of eugenics ... the child in question was given a hysterectomy to prevent the release of natural growth hormones by the body. She was not given a hysterectomy to prevent her from reproducing. And therefore .. I'll say it one more time for good measure ... its not eugenics!!!!!!! Sigh ...

 

[Caradana]

I can envision circumstances where I would be comfortable making this decision for my child and my family. Absolutely.

 

[Mono~rail]

I mentioned this before, but I'll say it agian. This is not a case of eugenics!!

Eugenics is when people who are not considered "fit enough" or "good enough" to have a child are sterilized. There was a time when the mentally and physically disabled, as well as poor and nonwhite women, were routinely sterilized against their will or coercively, for the purpose of "improving" the "human race" (i.e., the thought was that if "better" people had more children and the less "worthy" had fewer or none, evolution would eventually result in an improved human race). Eugenics was scientifically misguided and it was ethically horiffic. I will agree with you completely on that ... It unfortunately does continue to happen today with the mentally handicapped.

However, this is not a case of eugenics ... the child in question was given a hysterectomy to prevent the release of natural growth hormones by the body. She was not given a hysterectomy to prevent her from reproducing. And therefore .. I'll say it one more time for good measure ... its not eugenics!!!!!!! Sigh ...

I don't have anything to add ~ just re-inforcing that you are correct.