Down's syndrome

In My Humble Opinion
1

Has any doper here adopted a Down’s kiddie?

Or does any parent here have a Down’s child ( 3 yrs old)

I know that if anyone researches my posts this may seem a strange question from a guy who was so convinced he didnt want children that he had a vasectomy at 21 ( with no valid relationship and no actual offspring at the time)

What I really want to know is the spectrum of challenges a down’s child may face. How can a person help her to achieve everything she could be, hampered by this condition? I believe from my experience with her that she is quite high level operating. ( for a 3 year old baby!)

And although I would never have thought that I could have thought this about a child. I just love her to bits!
The interwebs seem to me quite generic in their classification and problems associated with Downs.
I know my OP is not giving the full details. but am torn at the moment between sponsoring and actual adoption of a young downs child… And yes it is a shock to me too.

2

I grew up around kids with Down Syndrome. They’re largely sweet and innocent, extremely friendly and nice. Though most will never be what a cognitive normal person will be. (i.e. never go to college, unlikely to marry/have kids)

3

They also commonly have other genetic problems/birth defects in addition to their Downs. So you may be taking on more problems than just the one.

Neither of my children have Downs. My nephew does. I have not seen that his personality is any better or worse than anyone else in the family.

I get the impression that you would be a single parent. Forgive me if I am mistaken.

Being a parent is stressful. Being a single parent is markedly more stressful. Being the parent of a disabled child is also stressful. All of them together, and I think they multiply rather than merely add. Keep also in mind, as mentioned, that you will probably be parenting the child for the rest of your life - he/she will never completely grow up or be able to live a fully independent life.

Perhaps I sound too negative. If so, I apologize. It isn’t a thing that I could possibly do, or even consider doing. YMMV - if it does, God bless you.

Regards,
Shodan

4

My closest cousin had Downs. She was 20 years older than me and was actually my father’s cousin. She was a happy girl, most of the time. My great-aunt had her enrolled in a workshop that was 9-5 M-F through the province. They were tasked with work that was on their level. Assembling packets, stuffing envelopes, etc. She got a paycheck every week and had an allowance from that. She loved jewelry, the gaudier the better and would be adorned with it all the time. She was content with her routines and patterns.

She was never able to live on her own. She had significant cardiac issues which is how she ended up dying at 45. If you knew her, you could figure out what she was saying, but she was unintelligible to most people. She hated crowds and there were occasions where she had become violent with her mother when asked to do something she didn’t want to do. My grandparents were her “babysitters”, so she was around a lot when I was young. Her father died when she was very young, so my grandfather was very much a father to her. He was clearly her favorite person in the world.

My cousin was probably somewhere around 5-8 years old mentally. She was verbal, but did not read. She could write and spell her name, but if she wanted to write any more than that, you had to tell her each letter. She was an excellent mimic. If she was born today, her parents would have been encouraged to teach her sign to communicate more easily. Her parents were advised to institutionalize her, but they wouldn’t do it. .

Downs can range from very severe to mild. Some people with Downs will test average on intelligence and some are profoundly mentally disabled. Cardiac issues are sometimes present as well as a higher risk of leukemia. Joint problems are also common. Some are very medically fragile, others are healthy.

IMHO, someone with Downs can lead and live a very productive and happy life, but it is a huge responsibility to take on. My aunt had contingency plans and back-up plans if anything were to ever happen to her. Someone needed to be responsible for my cousin 24/7/365. There are no days off.

5

It really depends on the child - some are much more high functioning than others. In spite of the drawbacks, however, all the Down Syndrome children I’ve known (psst - there’s no ‘s’) are extraordinarily sweet and loving.

6

Do you mean other problems besides their mental retardation? That can be true, and the problems vary from extremely medically complex to "has problems but not a lot of “obvious” ones

7

I really hate this stereotype because there are some that are brats. I worked with a real terror, who was also very high functioning, that no one would ever have called sweet or loving because he really enjoyed kicking people and throwing furniture at them, and another who was lower functioning and was also no one’s idea of sweet. Their personalities are as variable as other kids, really.

8

My aunt has a son with Down Syndrome, and I think she would say it has turned out to be vastly more challenging than they anticipated. He is non-verbal, though apparently quite bright in other ways, and this causes huge problems. He’s very curious and disruptive and tends to run off in the blink of an eye and cause epic trouble, but he doesn’t respond well to traditional discipline. It really takes two alert, “on-duty” adults to keep him safe anywhere but home, and even at home someone needs to be “on-duty” every second: he’ll unlock the front door and be blocks away in a couple of minutes. It’s like he’s been in the terrible twos for several years, and there doesn’t seem to be any light at the end of the tunnel.

The fact that he doesn’t speak is also a problem. For one thing, they don’t really know how much he understands, and he can’t really explain himself, and so he gets frustrated and lashes out. Also, not hearing “Mama” or “love you” or much sign of engagement at all is rough.

The time commitment and expenses are also considerable. She (and he) work with I don’t even know how many specialists and therapists and social workers to get him every possible advantage/educate herself on the best strategies.

I don’t mean to discourage you. I just want you to understand that this would be difficult beyond what you can imagine right now.

9

Not to continue to rain on the parade, but I can also add that Downs kids can be challenging. I know of one who is also ADD. When he was little he could be quite violent. I haven’t seen him in several years, but I do know that at one point, they considered institutionalizing him — and this was a huge step, because they worked like slaves to give him every educational enrichment, advantage and mainstream opportunity.

10

Yes, other medical problems. My nephew had an intestinal blockage, a heart defect, and a jaw defect in addition to his mental issues. All of which were surgically corrected, but it can be an issue.

Regards,
Shodan

11

That’s why I said “all the ones I’ve known”.

12

It’s likely to be a life of endless servitude and you will likely bury your child before you die.

Some people are ok with that. Others… well, I guess I would have to raise a kid with Downs if I gave birth to it. But you could not get me to adopt one for all the tea in China.

13

It might help if you explained more of what the circumstances are that led you to this.

As others have already commented, Downs syndrome is highly variable, with some kids being severely disabled and others very high-functioning, so your best bet may be if you can talk to some of the professionals involved in evaluating and caring for this young girl about what her outlook is. A bunch of yokels on a messageboard (myself included) can’t intelligently comment on that.

14

Wow, that brush is so broad! Where did you ever find it? It can be this, but it’s on the less likely end of the spectrum, and becoming moreso all the time with medical advances. Depends on the type of DS you have, for one.

It really depends on the child. My baby cousin (who’s 20, eep!) is a reasonably high functioning DS person. She speaks understandably, she reads and writes at about a fifth or sixth grade level. I keep up with her on Facebook, since she lives pretty far from me now. I love her to pieces, she cracks me up. But she’s a multi faceted person, not someone who is just DS and nothing else.

She’s had two operations, one to make her tounge smaller so her speech could be more understandable, one to correct a cardiac defect. She has her own apartment, which she owns - only because her father died last year, and her mother bought it outright with the insurance he had for my cousin. She was renting previously,a nd recieved assistance to do so. It’s better for her to own since she makes enough at her job and with disability to pay for things, and there won’t be any changes then and she won’t have to move. She doesn’t cope with routine changes really well at all.

There’s a state program which provides her with someone to check on her by phone or in person every day. She has a guardian who looks after her money, and helps her pay bills. (There’s a program she’s in but I don’t know much more about it, sorry.) She can cook for herself, and does. She keeps her apartment cleaner than I keep my house (because it’s hers, and she wants her dad to be proud of her - the thought of which makes me a bit teary.) She has a factory job, and makes her own money. Sure, it’s minimum wage, but its a real job, not just a make-work type one. She is taking classes to learn to bake, and is doing reasonably well. She’s hoping to be work in a bakery or a grocery store deli.

She was not your sterotypically sweet happy child, though. She could and did throw tantrums, hit and kick. This mostly stopped after she became understandably verbal after her operation. She can be manipulative and sneaky, if she wants. She does this now that she’s older, rather than tantrum. She can also be a ray of sunshine. Her sense of humor runs to sarcasm, and it cracks me right up.

She has a boyfriend, also with DS. She attended mainstream schools, had neurotypical friends and is active in Special Olymics as a volunteer now, although she played sports when she was younger.

She’s permanently about 13 in most respects. All her life she’s been taught to compensate and to be independent. Her mom is close to her, but not to the point where she’s involved in every aspect of her life anymore. And that’s ok. Her mom has always wanted to get her to a point where she can have a real life of her own, and that her mom can have a life of her own as well - it seems to be working.

Even when her dad died last year (her parents are divorced) she did ok. Not great, but ok. She was able to process it and accept it, although obviously she’s devestated, as were we all. My uncle was a pretty awesome guy. She didn’t go off the rails or stop going to work or anything. She needed about a week off and another month or two of reassuance from us all that she was ok and so were we, and she’s been fine afterwards. So pretty ‘normal’, for want of a better word.

She’s been educated about sex and where babies come from, and she has an IUD. I suspect she is intimate with her boyfriend. This can be an issue with DS people, is my understanding - having sex without understanding the consequences.

OP, I would be really sure you can cope with it alone - really, really sure. My cousin, and her parents have had to really push to get her where she is now - and she does have the mildest form of the disorder. If they had been less ‘pushy’ about getting her the education and training and support she needed the outcome for her - a mostly independent, pretty normal life - would have been vastly different.

Just be really sure, because people on a message board aren’t going to talk you into or out of anything.