Anonymous
12/11/2022 19:23
Subject: Re:True statement? Downs Syndrome is a spectrum
Anonymous wrote:
Hi All,
I will just chime in as the mother of an adult daughter with DS that there is definitely a spectrum of functioning levels with DS as there is with most disabilities. One aspect of DS is that some individuals can also be on the Autism spectrum. When our youngest daughter began public education, she was the first student with DS to demonstrate that a child with this disability could learn to read as her peers at a young age. She still benefitted from a self-contained program with mainstreaming out for one class in grades K-4. Her strength was in literacy skills, and this is where the emphasis was placed. A few years ago, a student with DS received a regular high school diploma in the same school system. She did this with a lot of tutoring, but definitely had much stronger cognitive skills.
Our daughter has worked in the same college dining hall since she completed an excellent Post High program part-time during the academic year three days a week. She has volunteered at the local senior center wiping tables one or two days a week depending on college breaks part-time. In her job she earns $14.57 as any other peer in her job category. She participates in some Special Olympics sports, and she enjoys more the local Adaptive Recreation program offering - Zoom and now getting back to in-person. She has taken piano lesson weekly since she was 15 and has now progressed from pre-primer to Level 2 with chord and two-handed pieces. her rhythm may not be quite typical, but she has some very good pieces and enjoys playing about 45 minutes a week. It is a good outlet to continue to develop mental pathways that she used to use a lot more while in school. She keeps her own calendar, can organize all she needs for four different things she does weekly ahead of time, can stay on her own safely at home and enjoys weekly outings in the community with a college student. We would not leave her overnight on her own. She will always need some direct supervision in a housing setting as for one thing she has sleep apnea and lacks the muscle strength to handle the equipment nightly.
Looking back education for us was not about socialization after preschool, but to educate her as we knew before she began the academic outlook back then was a placement in functional skills only. By 10th grade, we actually opted for a placement in that classroom as the other high school teachers at that time were too used to "little or no supervision and an attitude of working towards the lowest common denominator of little parental involvement"(often through no fault of the parents of the students they taught.) When I saw their lazy attitudes, I opted for the wonderful teacher who would prepare one for life in the community and most importantly a job. Also, we always had the same social and behavioral expectations of our youngest as we did for our older two daughters. I think this approach helped her do well out in society. She knows she has Down syndrome and does not mind that, but she will say she is not MR which lets you know one picks up the negative words very early. It is not a walk in the park, but I can also attest that those judged to be "the best and the brightest" can also have their issues.
Impressive parenting. Would love to learn more about your story
Anonymous
12/11/2022 19:20
Subject: True statement? Downs Syndrome is a spectrum
Anonymous wrote:I was not about to get into a debate with a friend that has a child with a mild form of Downs Syndrome, but she insisted that even severe Downs Syndrome isn't that bad. I'm a special need Mom and lots of kids with Downs Syndrome also get my child's chronic health condition that would be infinitely more difficult to deal with not to mention more severe heart conditions, digestive conditions, autism, etc.
What say you DCUM? All all Downs Syndrome kids needs the same? So "you know what you're signing up for"?
I'm going to start off by saying that getting into a debate about how you know more than someone else about their child's condition, when you don't even know the name of the condition, is not a good look.
Anonymous
12/11/2022 19:17
Subject: True statement? Downs Syndrome is a spectrum
I also think that "spectrum" implies that there are a group of people right on the edge that either could have the dx or not, depending on the circumstances and the provider. Down Syndrome is a genetic condition that you either have or you don't.
Anonymous
12/11/2022 18:31
Subject: Re:True statement? Downs Syndrome is a spectrum
Hi All,
I will just chime in as the mother of an adult daughter with DS that there is definitely a spectrum of functioning levels with DS as there is with most disabilities. One aspect of DS is that some individuals can also be on the Autism spectrum. When our youngest daughter began public education, she was the first student with DS to demonstrate that a child with this disability could learn to read as her peers at a young age. She still benefitted from a self-contained program with mainstreaming out for one class in grades K-4. Her strength was in literacy skills, and this is where the emphasis was placed. A few years ago, a student with DS received a regular high school diploma in the same school system. She did this with a lot of tutoring, but definitely had much stronger cognitive skills.
Our daughter has worked in the same college dining hall since she completed an excellent Post High program part-time during the academic year three days a week. She has volunteered at the local senior center wiping tables one or two days a week depending on college breaks part-time. In her job she earns $14.57 as any other peer in her job category. She participates in some Special Olympics sports, and she enjoys more the local Adaptive Recreation program offering - Zoom and now getting back to in-person. She has taken piano lesson weekly since she was 15 and has now progressed from pre-primer to Level 2 with chord and two-handed pieces. her rhythm may not be quite typical, but she has some very good pieces and enjoys playing about 45 minutes a week. It is a good outlet to continue to develop mental pathways that she used to use a lot more while in school. She keeps her own calendar, can organize all she needs for four different things she does weekly ahead of time, can stay on her own safely at home and enjoys weekly outings in the community with a college student. We would not leave her overnight on her own. She will always need some direct supervision in a housing setting as for one thing she has sleep apnea and lacks the muscle strength to handle the equipment nightly.
Looking back education for us was not about socialization after preschool, but to educate her as we knew before she began the academic outlook back then was a placement in functional skills only. By 10th grade, we actually opted for a placement in that classroom as the other high school teachers at that time were too used to "little or no supervision and an attitude of working towards the lowest common denominator of little parental involvement"(often through no fault of the parents of the students they taught.) When I saw their lazy attitudes, I opted for the wonderful teacher who would prepare one for life in the community and most importantly a job. Also, we always had the same social and behavioral expectations of our youngest as we did for our older two daughters. I think this approach helped her do well out in society. She knows she has Down syndrome and does not mind that, but she will say she is not MR which lets you know one picks up the negative words very early. It is not a walk in the park, but I can also attest that those judged to be "the best and the brightest" can also have their issues.
Anonymous
12/11/2022 14:56
Subject: Re:True statement? Downs Syndrome is a spectrum
I'm the parent of a child with Down syndrome. Yes, there is a range. Our geneticist was able to speak to us in statistics and probabilities, but could not definitively tell us what our kid's IQ or health issues would be. Of course, that's true for any child, not just children with Ds.
I think what your friend was suggesting is that Down syndrome is not as awful as people make it out to be. There are a lot of negative stereotypes that just are not true. When I got the diagnosis, I imagined that I would have to quit my job and nurse a vegetable for the rest of my life. But in reality, my life is not that much different from parents of typical children, except that we have a lot more appointments. No, my kid is not likely to graduate from Harvard or be a rocket scientist, and he will probably always depend on us for support, but he's happy and we're happy, so it could be worse.
That's not to not to say that Down syndrome is all sunshine and rainbows. I am not happy that my son has Down syndrome, and I am still grieving the diagnosis in my own way. For some people, the way they process the diagnosis is to get on the Ds positivity train. There is a lot of "happiness porn" about Down Syndrome out there. Your friend may feel that she cannot acknowledge the downsides because she is trying to combat the terrible discrimination facing her child.
I think what your friend was suggesting is that Down syndrome is not as awful as people make it out to be. There are a lot of negative stereotypes that just are not true. When I got the diagnosis, I imagined that I would have to quit my job and nurse a vegetable for the rest of my life. But in reality, my life is not that much different from parents of typical children, except that we have a lot more appointments. No, my kid is not likely to graduate from Harvard or be a rocket scientist, and he will probably always depend on us for support, but he's happy and we're happy, so it could be worse.
That's not to not to say that Down syndrome is all sunshine and rainbows. I am not happy that my son has Down syndrome, and I am still grieving the diagnosis in my own way. For some people, the way they process the diagnosis is to get on the Ds positivity train. There is a lot of "happiness porn" about Down Syndrome out there. Your friend may feel that she cannot acknowledge the downsides because she is trying to combat the terrible discrimination facing her child.
Anonymous
12/11/2022 14:05
Subject: True statement? Downs Syndrome is a spectrum
Anonymous wrote:As a parent of a special needs child myself, this argument is ridiculous. Most special needs kid have health issues, which is obvious if you look at any sn group of kids.
Yes, downs kids aren't all exactly alike!!! So what?
No idea. I'm not sure what my friend's point was either. I certainly wasn't suggesting that she has it easy or downplaying what she's been dealing with, but she essentially just shut down the idea that there is a spectrum.
Anonymous
12/11/2022 14:02
Subject: True statement? Downs Syndrome is a spectrum
As a parent of a special needs child myself, this argument is ridiculous. Most special needs kid have health issues, which is obvious if you look at any sn group of kids.
Yes, downs kids aren't all exactly alike!!! So what?
Yes, downs kids aren't all exactly alike!!! So what?
Anonymous
12/11/2022 13:57
Subject: True statement? Downs Syndrome is a spectrum
Anonymous wrote:There is severe Downs syndrome, of course, but who are you to tell her that it is so bad? I mean, what is the point of this argument except for you to say you would terminate a kid who might be like hers, and for her to be hurt by that?
I relate to it in that my kid has the "extra" disease that kids with down syndrome are prone to getting (but certainly not every one gets it) and it's a shitty disease for people that don't have an intellectual disability. I'm not talking about abortion, I'm talking about the spectrum can be worse and it's not predictable. She disagreed and we left it at that.
Anonymous
12/11/2022 13:56
Subject: True statement? Downs Syndrome is a spectrum
If you’re going to argue about it, you should call it the correct name. It’s Down Syndrome, not Downs Syndrome.
Anonymous
12/11/2022 13:53
Subject: True statement? Downs Syndrome is a spectrum
There is severe Downs syndrome, of course, but who are you to tell her that it is so bad? I mean, what is the point of this argument except for you to say you would terminate a kid who might be like hers, and for her to be hurt by that?
Anonymous
12/11/2022 12:40
Subject: True statement? Downs Syndrome is a spectrum
Anonymous wrote:I was not about to get into a debate with a friend that has a child with a mild form of Downs Syndrome, but she insisted that even severe Downs Syndrome isn't that bad. I'm a special need Mom and lots of kids with Downs Syndrome also get my child's chronic health condition that would be infinitely more difficult to deal with not to mention more severe heart conditions, digestive conditions, autism, etc.
What say you DCUM? All all Downs Syndrome kids needs the same? So "you know what you're signing up for"?
Definitely don’t get into a debate with your friend until you know the name of the syndrome.
Anonymous
12/11/2022 12:39
Subject: True statement? Downs Syndrome is a spectrum
Anonymous wrote:I was not about to get into a debate with a friend that has a child with a mild form of Downs Syndrome, but she insisted that even severe Downs Syndrome isn't that bad. I'm a special need Mom and lots of kids with Downs Syndrome also get my child's chronic health condition that would be infinitely more difficult to deal with not to mention more severe heart conditions, digestive conditions, autism, etc.
What say you DCUM? All all Downs Syndrome kids needs the same? So "you know what you're signing up for"?
Definitely a spectrum. I have worked with several children with Down's Syndrome. They ranged from highly functioning and able to be mainstreamed to non verbal with very limited academic and functional abilities. As with all disabilities, there can be co-existing conditions that are often difficult to diagnose in children with Down Syndrome.
Anonymous
12/11/2022 12:38
Subject: True statement? Downs Syndrome is a spectrum
There’s a mosaic form of it. We learned this was the case with a relative when the family did DNA testing for ancestry and it came with health data. We already knew he had very low IQ and other conditions associated with DS like I descended testes, but he didn’t have other physiological signs, like class DS facial features.
Anonymous
12/11/2022 12:34
Subject: True statement? Downs Syndrome is a spectrum
Of course not everyone with a particular disability is the same. Intellectual disability can be mild, moderate, severe. Not everyone with Ds has all of the medical issues that can be associated with Ds. How an intellectual disability impacts adaptive functioning differs from person to person.
Anonymous
12/11/2022 12:32
Subject: True statement? Downs Syndrome is a spectrum
I was not about to get into a debate with a friend that has a child with a mild form of Downs Syndrome, but she insisted that even severe Downs Syndrome isn't that bad. I'm a special need Mom and lots of kids with Downs Syndrome also get my child's chronic health condition that would be infinitely more difficult to deal with not to mention more severe heart conditions, digestive conditions, autism, etc.
What say you DCUM? All all Downs Syndrome kids needs the same? So "you know what you're signing up for"?
What say you DCUM? All all Downs Syndrome kids needs the same? So "you know what you're signing up for"?