My Nephew is DS

Published on July 24, 2006 By Dr Guy In Home & Family

His name is Mathew. He is now 7 years old. The irony is that I have another nephew on my wife's side that is also named Matthew. He is also 7 years old (they are a month apart in age). But that is just one of those strange things.

My sister's son has Down's syndrome. He is not retarded. That is an outdated term. You know how PC goes. It was in vogue 40 years ago, but not now. Now they are 'differently abled'.

And I hate PC! But in some respects, it is true! WHile he lacks the skills to be in the regional spelling bee or in the TAG (Talented and Gifted) program, he is learning. Very well, if slowly. And what he lacks in intellect, he makes up with love!

He is the apple of not only my sister's eye, his step father's eye, his 'uncle's eye' (long story for another day), but of my eye.! He knows no hatred or fear. He loves! And it is unconditional.

One day, he will be a man - biologically speaking. And he will be a man as he will have advanced as far as he can go. But he will be able to take care of himself. Yes, he will need guidance, and we will all pitch in. But he will be a man. But he will not have to nurse him every day. He will be an adult. Making adult decisions.

And one will be marraige. And quite frankly, I hope he does chose to get married. The offspring of 2 'differently abled' people is not a slug. It is a human being. Who in all probability will be normal. And they will love that child like no other child has ever been loved. And we will be there to help them. because they love us, and we love them.

The "Differently Abled" are not slugs. There are some slugs. Work in the schools, and you will see them, and cry. I have. Their parents love them, but they will never be more than loving 1 year olds.

But Differently Abled is not that. They may not be geniuses. But they can function as adults. With guidance and help. And after all, have we as a society not advanced to at least that stage yet?

That we cannot provide guidance for those in need? not a welfare state. Just Guidance. But the state is not going to be involved. His family is.

I have already committed to making my favorite nephew's life as normal as possible. I love him, and he loves me. And as he grows, I know it will only get better.

Comments

Trudygolightly

on Jul 24, 2006

A beautifully written, insightful article. I'm so happy he has a loving family to be supportive and guiding. Yes, someday he will take care of himself, just like my ex-huband's half-sister takes care of herself.

Guidance is important, as with any child.

I think we all have a disability, of some kind. None of us are perfect specimens.

Heart touching article Dr. Guy

Dr Guy

on Jul 24, 2006

Guidance is important, as with any child.

I think we all have a disability, of some kind. None of us are perfect specimens.

Guidance is very important. But yes, he will need it long after others dont. But that does not mean he will not contribute. He will. Because he has love. And maybe not a 150 IQ, but enough smarts to survive.

just john

on Jul 25, 2006

IQ/Intelligence is such an interesting measure because it only measures potential. Potential energy stored is simply wasted. In my encounters with differently abled people I have found that most have an unbridled capacity for love. I would easily say some of the most amazing people I have ever met are the ones who do more with less.

I don't know that I agree with all challenged adults producing offspring. It has nothing to do with the great possibility of their offspring being the same. There are only two situations where I can think it might be an issue. If the couple was not able to take care of a child safely and I also think that a 'normal' child in that situation would somehow be forced to deal with a difficult situation. I don't see how two adults who could not be trusted to take care of themselves would ever have the opportunity to reproduce so that really isn't much of a possibility.

We all take risks in reproduction. My wife and I are very aware of the risk factors with her pregnancy. We were very aware of the possibility of multiples and the increased possibility of defects. I would hate to see a world were someone else got to dictate my right to have children of my own. I think there are definitely situations were people with DS should be controlled but just when it becomes an issue of safety for the child.

Thanks for sharing your point of view on the subject.

Dr Guy

on Jul 25, 2006

I don't know that I agree with all challenged adults producing offspring. It has nothing to do with the great possibility of their offspring being the same. There are only two situations where I can think it might be an issue. If the couple was not able to take care of a child safely and I also think that a 'normal' child in that situation would somehow be forced to deal with a difficult situation. I don't see how two adults who could not be trusted to take care of themselves would ever have the opportunity to reproduce so that really isn't much of a possibility.

Oh, I know there are some that just will never be able to care for themselves, much less a child. As I said, when I worked in the schools, I saw some that were flat out cant even go to the bathroom on their own. It is sad to see them, but they will always be cared for, and cannot care for others. But many others, labled "Special" or "Differently abled" are slow, and as you note, they do more with less. They can and do take care of themsevles (I am reminded of Benny on LA Law). And I see no reason why they cannot have children.

As for passing down the genetic defect, there were no cases of Down's syndrome in our famly until my nephew was born. It can happen to anyone. If we are so afraid of having a child that does not have 10 fingers and 10 toes, then we best never have any. For Children are a crap shoot. Sometimes you roll elevens, and some times snake eyes.

JillUser

on Jul 25, 2006

Dr. Guy, I understand your perspective but disagree with your conclusions. I have a lot of experience with DS. There are many levels of ability but none of them end up "functioning as adults". No matter how high functioning they are, their brains limit them when it comes to many very important "common sense" issues.

I worked in group homes for ADD (Adult Developmentally Disabled) individuals. It ranged from people with sever disabilities to a group home for the highest functioning DS. I absolutely loved the DS home. They were like a huge family of loving kids but they aren't kids. They were able to have jobs. They were able to do household chores, read, write, etc. But when it came to understanding how to do anything on their own, they couldn't.

Decision making and guidance are two of the most important tasks of a parent. Just because an individual has the physical ability to produce a baby doesn't mean they have what it takes to parent. In reality, if a DS couple has a baby, their support system will need to do the parenting because they themselves will continue to need parenting until the end of their life. Is that fair to the child?

My husband has a very high functioning DS cousin who is now 20. You wouldn't know he was DS by looking at him. You wouldn't know he was 20 either. He has slightly slurred speach but plays guitar, reads, does anything anyone else does. But mentally and emotionally, he will never be an adult. He still requires time outs. He has situations that he simply will never have the tools to deal with. He will need his parents or other guardian for the rest of his life.

I don't believe a DS adult is any more equipped to parent than a 14yr old. They both have the ability to do so though. We may not be able to stop them from doing so either. That doesn't mean it should happen. But at least the 14yr old has the potential to grow and mature. Even the highest functioning DS has a ceiling for what they can achieve mentally and emotionally.

I am not bound by any religious belief with the matter though. I have only come to my conclusions from my experience with and study of (I studied human development in college)these individuals. I think they have a lot to offer especially when it comes to love. I just don't think they have the ability to parent and therefore shouldn't.

Dr Guy

on Jul 25, 2006

I don't believe a DS adult is any more equipped to parent than a 14yr old. They both have the ability to do so though. We may not be able to stop them from doing so either. That doesn't mean it should happen. But at least the 14yr old has the potential to grow and mature. Even the highest functioning DS has a ceiling for what they can achieve mentally and emotionally.

While I will not debate levels of expertise, I disagree with you. I have seen some that clearly cannot. Yet I have seen some that are at a level where they can. My experience is not extensive, but clearly there are different levels as you well acknowledge. Most of the highest functioning DS children/adults are not in homes. Why? because they can function, as I said with guidance, on their own.

JillUser

on Jul 25, 2006

with guidance, on their own.

That seems like an oxymoronic statement. They will need "guidance" for the rest of their lives. I have seen some DS couples live in their own apartment but they need people who check in on them all of the time. One couple almost burnt the place down because they just didn't know what to do when they had trouble in the kitchen. If they themselves need guidance for the rest of their lives, how are they going to parent? They may have the ability to be trained how to feed a baby a bottle, change diapers, do laundry, but they won't ever be able to cope with the extraordinary things that can happen when parenting.

You are entitled to your opinion and appreciate your respect for mine.

KFC Kickin For Christ

on Jul 25, 2006

My limited experience with DS people have all been positive. I find them as you say loving caring people that have brought great joy to their parent's lives.

We have one young lady in our church. She's 18, looks about 12 and can read at maybe a first grade level. I can't imagine her having children even tho she absolutely loves babies. At this point in time she is craving a boyfriend. I hope someday this will happen for her but having children is such difficult, intensive work I can't even imagine this young lady or any of the DS adults I've known over the years doing so without great difficulty. But again there are always exceptions....

Good luck enjoying that nephew of yours. I'll bet you'll be learning just as much from him as he will learn from you.

Dr Guy

on Jul 25, 2006

but having children is such difficult, intensive work I can't even imagine this young lady or any of the DS adults I've known over the years doing so without great difficulty. But again there are always exceptions....

I have a niece. By another sister. She had twins. She has no mental deficiences. But she is really incapable of caring for them. So my sister does. No one would deny her the right to have a child. Yet she does not care for them (him now, one died at 2 years of age).

But due to prejudice and misunderstanding, they would deny the same joy to my nephew. Who might not know everything about parenting (and I will argue that any new parent does), but has loving parents and family that will help.

My Grandnephew is dead. His mother is not DS or otherly abled in any way. Shit happens. But perhaps if I had been there, he would be alive, but since "she" was an adult and perfectly abled, no one cared to check on her or her sons.

We can always be high and mighty when it comes to our knowledge of those less fortunate than ourselves. But where are we when those as fortunate, lose one. Seems shit happens too often. Even to the best (and she is not) of us.

JillUser

on Jul 26, 2006

Dr. I agree that shit happens but there is known potential for shit happening and unknown potential for shit happening. Lots of new parents, especially of multiples, need help with newborns. Newborns are scary and childbirth is difficult for the most able bodied. I have never met a DS woman who I would feel confident in saying could truly understand what childbirth, newborns and parenting really entails. Many perfectly "normal" women aren't prepared.

The problem is, DS parents require parenting themselves. It is known that they won't be able to fully care for themselves let alone their children...ever. So unless you can guarantee that their parents are going to be alive or some other volunteer caregiver will be there for as long as their children need care, it is irresponsible to encourage a DS couple to have children. It absolutely should not be a responsibility of the government to take care of children born to people who are known to be incapable of caring for those children and that doesn't simply apply to DS.

Dr Guy

on Jul 26, 2006

So unless you can guarantee that their parents are going to be alive or some other volunteer caregiver will be there for as long as their children need care,

I thought I already addressed the issue. And barring a major catastrophy that wipes out our entire family at once, that will not be an issue.

I respect your views. And I know you speak with a lot of authority given your own familiarity with DS. I just dont agree.

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