i recently, i’ve been able to spend some time with a person who had down syndrome. A few things i’ve noticed. First, some numbers. One in 800 births results in down syndrome. So there are many people with this. More detailed birth results? The average risk of having a child with trisomy 21 is 1/750 live births. Mothers in their early twenties have a risk of 1/1,500 and women over 35 have a risk factor of 1/70, which jumps to 1/25 for women 45 or older.
Read wikipedia for details on the chromosome problems that cause it. Now back to the girl Nimi.
Nimi, this particular girl knows two (2) languages. I think is pretty impressive. Her main caretaker says she is losing one of the languages, I asked if it was possible Alzheimers disease. As for her dual languages, you cannot know this easily, it’s very difficult to only in certain situations, will she speak one of the languages? languages. And yes, even her family member cannot really force her to just start speaking the other language. But in certain conditions, she will speak the other language just fine.
Today the caretaker told me some peculiars. The girl, or woman, she is 52 years old, she will take her trash out of her room daily. Taking the trash out of of her room, without being told, is impressive to me. She has learned behaviors that she does every day and will not forget them. But they need to be repeated, like all of us. Her room is very organized and shee likes it that way, she will help clean up the table after dinner. In general, she likes order in her life. Don’t we all? She (her name is Nimi) will feed the dogs if told to do so. She will not feed the dogs unless someone directs her to do so. Taking a bath, her caretaker Alice says that she must be supervised. Why? She will use most of the shampoo in a single bath. I told her a solution to that problem, a pump bottle of shampoo screwed to the wall, as hotels do.
Even somewhat simple task requires someone to watch her, it depends on the task. The woman, Nimi, will drift off and not finish some tasks. Nimi will constantly, about 15 times a day, as if her cousin is coming over. Her cousin has not visited in several weeks, but every day, Nimi asks about her cousin possibly visiting, and she really wants this and can not be told that this will not happen. So in a hour, she asks again. And more asks, throughout the day. I am a visitor and am not with her often yet she is friendly to me most always. As her caretaker says, Nimi is in her own world. And with explanations, she can often make her own decisions. Nimi appears often to enjoy life, making herself laugh, perhaps enjoying life more so than a normal person.? She will sometimes cry and get upset about her father being gone (her father is deceased). Obviously she knows what it is to be loved and to love, and is mindful of relationships.
i’m sure you’ve seen homeless people talking to themselves right ? This particular down syndrome lady will also start talking to herself , particularly when she is left out of conversation. It just seems something that is part of being human.That we will talk even to ourselves if there’s no other choice.
Nimi the down syndrome adult, she will notice things but she will not make eye contact and focus on them sometimes. For whatever reason, her brain is often completely fine with the blurry peripheral picture. Often only uses peripheral to look at something with her peripheral vision, and that’s enough for her to know what’s going on. And maybe start laughing at a situation, or you know, understand that there is something going on that she needs to move away from or whatever. And she never makes eye contact , in some of those instances. I don’t think this is something trained that she has a trained behavior ; I think this is just the way her mind works. Something about focus, focusing on things for down syndrome people is is a little bit different than everyone else. We want to focus on things. Normal people want to see these things better. But the down syndrome, people don’t seem to always need to do that. Perhaps because it just takes more energy, maybe it’s a little tiresome. I don’t know what it is. For sure there’s mysteries here
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spending the time with this person definitely has changed my mind, i have a different perception of average down syndrome person. They are not like children, they are unique.
June 2026. We have a discussion about Nimi. I tell her caregiver,
“Nimi jumps to conclusions often, then no more thought, action, if any, and on to the next. No deep anlysis.” I say.
Her caregiver thinks that that she the girl with down syndrome, she doesn’t know how to say that there’s anything in between bad and good. Meaning like she doesn’t really ever say like she’s doing so.So, like she’s doing just mediocre or just okay. I don’t think it’s easy to solve. But I thought one way, perhaps maybe is to make some cards. Like mood cards and integrate those into something she does in the morning so or something she does in the middle of the day. So you have her go get something. And then have her take one of the cards that she thinks represents the way she feels, and so the cards would be through, like one through 51 being a very good mood and then I put a picture with the card of like something nice, like a rabbit.And then at the other end, there’s number five card, which has a picture of like an upset guy.
i don’t know if she really understands the difference. We tried to show her the differences, but it will take some training like anything with down syndrome people. anyway, these are the cards we made out of construction paper. And some numbers, and perhaps there are 2 complicated, maybe I should have just had a number and a smileface or a no smileface. But these cards had three things. Number 4, near very upset, shows a hangry or say hungry person.
doing something like this, I realize it’s just like a gamble.There’s just really no way to understand what is going on with some of their thinking and habits and rituals and reflex. Her caretaker was saying that there’s almost no way she’s going to get her out of the habit of using her shirt to wipe her mouth, after like, after she eats for example. She considers it a battle lost like there’s just no way you’re going to get this down syndrome person to change, to not to do that. And she’s probably right in many ways. People get set in their ways just like down syndrome Do, and it’s very difficult to change. Live and let live.?
keeping Nemi on task is very difficult at depending on the task. Just like people often she gets attention.Deficit disorder and wants to get another input, like turn on the tv, While she’s doing something.
i don’t know the the facial and mood cards are just a tool to try to help maintain and keep the down syndrome. Person thinking happy and somewhat communicative, so that you can best tend to their needs. I think that’s what’s important is that if it’s just a tool to help the down syndrome person express themselves, then it may be a good thing.And maybe useful.
They had a picture a number and a facial expression, so here they are:
As the caretaker of the down syndrome person, you know the frustration of teaching them anything new. Patience patience, patience, and its often the caretaker patience that needs care. If you run out of patience and love, you can end up ignoring the person and becoming numb, not listening to their needs. Today Nimi wants the TV show really loud, multiple attempts to show her that I want it lower, result in no progress. She often, like a child, believe she can get her way. After several attempts, I have to sieze both remotes from Nimi so she can not turn up the TV. She knows I want it lower, she is just trying to get her way. And you start to think, there is little hope in getting this person trained to do simple things, you just give up. I show her a card of the sad face, I say “No bueno, Nimi”.
I try to tell her I am angry. She may realize my anger, but the logic is not there to know, no connection or deep analysis of why I am mad. It may seem mean, but often the logic of the down syndrome person is very lacking. .even with knowledge, the mind can’t relate events, with a lack of logic!
Early she just looks at me and laughs. As my mind flexes in frustration and puzzle that is the human called Nimi. Her mind is a mystery box.
Good luck on your journey working with Down Syndrome person.
copyright 2026 Rod Deluhery
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