Kaitin

I agreed to help exercise and have fun with a nonverbal girl who is severely mentally retarded. She is obese and inactive and just has a mother (her dad left). Her mother has some problems.

[My roommate is helping me write this, and she says that I may offend people with the words "mentally retarded" and "obese". I don't mean these words in a bad way - they are medical terms. I need readers to understand and writing "a bit overweight" or "a bit different" doesn't explain. I hope it is not offensive.]

The girl Katy doesn't speak, but she can hear. She doesn't know ASL, but she has some signs. Most are made-up hand commands. The mother can hear.

I met with Katy and her mom at a big gym. It was a bad experience. I couldn't remember her made-up signs all the time and Katy couldn't understand me really. Katy wasn't coordinated to kick a soccer ball. She wouldn't walk around the track, just went a ways and then wandered away. I don't think basketball would be ok - and I am terrible with it. She has no attention span and was hyper. Her mom did NOT understand that talking to my back or shouting at me from far away doesn't work. I kept having to run over to her mom, still couldn't understand her (I wasn't wearing HAs because they are giving me problems that are worse with the echoes and loudness of the gym with basketball games always nearby), and then had to run back to Katy.

I want to help Katy. She needs exercise and her mom (who is obese too) can't help her. I know I will learn her signs, but I don't know if I can help her even if I do. Her and her mom are alone, and the mom is very unhappy. Next week, her mom wants Katy and me to be alone. Maybe that is better - no mom shouting etc - but I have no ideas about what to do. I have never had this situation before.

Any ideas?

Deafness

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jillio

It sounds as if this family needs some serious intervention. That's not to say you shouldn't keep trying, because everything has the potential to make a difference. But the problems this family is having run deep, and need to be addressed before any progress can truly be made.

Kaitin

I am afraid you are right again, Jillio. for reply. I don't know how to help Katy and think maybe that I can't meet with her? I don't know. I don't want to say "away" to her, but what can I do? She has a bad situation. I know her mom has therapists and gets financial help, but not enough total.

jillio

If you feel that just having a meeting with her one or two times a week would be helpful, then I would say to do that. But jsut keep in mind that the problems are serious, and there is jsut so much you can do. By the same token, it may take awhile to build any kind of relationship with her, but I think she definately needs some kind of contact with others. We never know how even something small can impact the life of another.

If you want to continue trying to help, just remember to keep your goals small, and to realize that if it starts to overwhelm you, its better to pull back.

OpheliaSpeaks

Very true. I have worked in this field for many years, both with special education youth, as well as with adults in a group home setting (schizophrenic, autistic, MR, etc - I used to have knives pulled on me on a daily basis...yeah, I've since moved on!)
We always had a difficult time motivating the overweight residents to exercise and eat healthy. Morbid obesity is genetically related to MR (mental retardation) in some part, and in other parts it is of course related to lifestyle. It is hard too when there is limited parental support/understanding.
How old is Katy? I am supposing that she is functioning around the preschool level? The residents I worked with used to enjoy walks outside. Organized sports are not likely to work out so well and a giant gym environment may prove too overwhelming. Does she enjoy music? What about some funky dancing to a favorite cd she has? Appeal to her abilities without overstimulating her. Try staying close to an environment she knows well for awhile at first (ie: her home, neighborhood) Getting her active is important, but engaging her in appropriate and enjoyable activities is even more so. I realize it's very difficult to find out some of this information- it often seems like the system is working against you.
I commend you for wanting to help, but remember that your presence and dedication is what will benefit her the most. Her home situation sounds rather unstable - try to be a constant in her world. Someone she knows she can count on. :-)

deafdyke

MR is basicly a clinical dx. There's nothing "insulting" about it. Besides its better then "developmental delay (which is a label that I hate since dd can range from mild LD to profound MR)
Second of all, its very hard to quantify how smart a nonverbal kid is. I know of a man who was dx as PROFOUNDLY MR, and it turns out he can read and write! I know some other nonverbal kids who were thought to be severely MR, but it turned out they were pretty smart.
Have you talked to Katy's mom? What kind of services is Katy getting? It's possible that Katy might have a lot more potential then her teachers and therapists might think. Has she ever been evaluated or treated at places like United Cerebal Palsy? It might be that part of her problem is that she was never seen by the right people. Also, the mom might not be the best at bringing out Katy's potential, since it takes a lot of energy and effort to really reach severely effected kids.
I don't really have any good advice for you. Sigh............SOME severely MR kids can be very annoying b/c they may have really annoying behavoirs. I've experianced kids like that before.......

Kaitin

Wow. Scary.

Interesting!

Her mom is obese also and has bad health.

She is 16 and probably around preschool level I think.

I don't know but I am worried she would run in the street with cars. But the gym didn't work and I think was overwhelming.

I don't know. Good question.

Good idea!

Good idea about home and neighborhood.

I couldn't communicate with Katy or her mom. I didn't have HAs for her mom because of the gym. And I was so tired - Saturday morning is a bad time! My dad knows her mom and I will ask help for him. He is careful because she is his patient and can't tell much. But Katy is not his patient so he could ask more her mom.

I don't know. I thought I was no benefit to Katy, just running from Katy to her mom again and again. I think Katy's mom wants time without Katy. But thank you OpheliaSpeaks. Good ideas and thoughts!

Kaitin

Small goals is a good idea Jillio. I think I need a decision about goals - exercise or fun or just being together? Probably not exercise really.

again!

Kaitin

My mom says "developmental delay" and in class I have had people say "differently able". I hate "developmental delay" and "differently able" because I think the words have no meaning. They seem like any problems or all problems. All are "differently able" so what is the meaning? Delay? Katy is not "delayed" and will "catch up".

I talked with Katy's mom with my dad who knows her. Katy goes to a special school and the teachers try to make her exercise. But she refused and Katy's mom thinks the teachers give up. I don't know about therapy or other services. Good questions.

I don't know. What is United Cerebal Palsy?

Good questions though, DeafDyke. I try not to say Katy is annoying but she was annoying! She wandered, ran away, didn't pay attention to me or her mom. I think she liked me - she laughed and smiled and hugged me too much. Her mom said that Katy doesn't touch people usually, so I guess she liked me. But no communication with me really. If we met in quieter places I would wear my HAs for her mom. And no more Saturday mornings with 3 hours sleep! (My fault ).

Exercising with Katy was my dad's plan. He thinks I should work with exercise and kids (gym teacher? trainer? soccer coach?). I don't know if I have energy to do so!

DeafDyke!

shel90

Hi there...

It sounds like a frustrating situation for both the girl and her mom. Even people who have mental retardation can get frustrated too.

I worked as a residental counselor at a group home for several years (my hubby took my weekend position and is working there now) Anyways, it seems to be a common problem with people who have those disabilities when it comes to the weight factor. From my experience, the obese residents would eat and eat until they are told to stop. I think they dont have the capabilies to recognize the signals that were sent to their brains telling them that they are full. As for exercise, they dont have the understanding level to recognize that being obese is harmful to their health nor understand the purpose of exercise. All they seem to understand that there are people forcing them to do things that they dont want to and as a result, they can rebel. As a counselor I tried to put myself in their shoes and try to adapt to meet their needs. It can be difficult but maybe that is worth a try? Find out what Katy is interested in and use those interests to get her moving? If she likes to watch TV, maybe put a dance show on and have her do some dancing for 20 mins daily. Just an idea to get the ball rolling.

Good luck and for the mother, it seems like she is not willing to adapt easily so give her time to learn how to work with you?

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jillio

Good point shel.... there is actually a disorder that prevents the sufferer from recognizing that they are full. With someone who is cognitively impaired, this could easily be the case. It is also possible that she is mistaking other feelings for feeling os hunger, or that she has learned to use food as comfort.

SxyPorkie

I agree with you... Katlin could create the bond between her and Katy.. but it takes time.... Wont hurt if Katlin tries to help Katy... therefore she has a big heart.... i applaud her for trying...

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deafdyke

Yeah, its one of the deletions of the 15th chromosome. Can't remember which one thou.
There are also thyroid and other endocrinlogical problems that can cause obesity.

You know, one of the problems with her being out of shape might be b/c she finds it boring. If she's at a special school, I'd assume that she has physical therapy. PT can be wicked boring. Especially if she has one of those " its better to teach someone to function "normally" then it is to give them a full toolbox of tools. For a lot of people, they can do whatever "normally" but it takes a lot of effort and then removes a lot of the fun.
UCP, is a service organization for those with CP. There are some CPers who are severely cognitively affected, and they could hook her up with activities and communication devices and things like that.
Oh, and Katin, she doesn't sound TOO bad on the annoyance scale. At least she's not the type who does things like hit you or ramble on in unfocused jabbering conversations. You should have been at a conference I was at this summer. There were TWO people like that. There was also a high functioning severe MR, who just acted so creepy, like staring at me and stuff like that.......

Kris

Kaitin

This is such a hard situation. I've been a counselor with cancer patients and they have a range of issues from mental to physical. I like to try to make things a game. Even if they only last a short time. Be prepared to change the game frequently as she starts to drift. I have two small boys, 2 and 4 years old. They do that constantly. I make picking up there toys a game and they do that. But if I ask them to clean up they wont. I think you said she has a preschool mentality. If that is the case use hand stamps and stickers as rewards for doing something. If she likes painting or coloring you can place the crayons or paint on one side of a room and the paper at the other so she has to walk more to do the activity. Just paint proof the room! You could try using a dry erase board to draw pictures to give a basic idea and then sign the word. Maybe she could learn a few of your signs. My kids love learning new signs and they love to use them all the time. I hope that some of these suggestions help or get some ideas started for you. Good luck!

shel90

One of the deaf residents at the group home where I worked was like that. He is sweet but he kept signing about winning the lottery over and over and over and over again. I started to hate the lottery ads! LOL!

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Buffalo

Prader-Willi syndrome, from dad' side. Not MR but obese.
Angelman syndrome, from mom's side. MR and always happy.
Both have the deletion of the 15th chromosome and the outcome depends on which parent it comes from.

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deafdyke

Thanks Buffalo..............It's Prader-Willy.Parents actually have to lock up food! Actually I thought that PW folks ranged from LD to MR.
Oh Shel, trust me your resident isn't the type I was talking about. He sounds more like someone with Asperger's. (which while annoying isn't as bad as unfocused jabbering) I'm talking about the type of person who starts out talking about something, and then starts yapping about something completely unrelated, and DOES IT ALL THE TIME!!!!!!!!!!!!!!!!!!!!!!

jillio

Thanks, Buffalo! You beat me to it!

Buffalo

I want to make a correction to the last sentence in my previous post here. It is the deletion of a certain part of the 15th chromosomes, not the whole 15th chromosome. It was talked about on tv not too long ago.

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jillio

Yes, the 15th chromosome is present, but abnormal.

deafdyke

Yes, Buffallo, total absense of a chromosome is 100% incompatible with life.

OpheliaSpeaks

deafdyke: Yes, Buffallo, total absense of a chromosome is 100% incompatible with life.

Actually, this is not true. Turner syndrome is the absence of an X or Y chromosome (XO, instead of XX or XY). It occurs in females, and the absence is tolerated because the X chromosome contains significantly more genetic material necessary for viability.
Turner syndrome comes with a variety of health problems that vary from case to case. Short stature and abnormal sexual development are the most noted effects. There was actually a Law and Order SVU episode about a girl with Turner's some time ago. Sorry for the off-topic add - I'm a biopsych major so this stuff is something I know off-hand.

deafdyke

Whoops..............*blush* Actually it is true, if you're talking about autosome disorders rather then sex chromosome disorders.

jillio

Wow, biopsych! I'm impressed. Although my focus is clinical, I loved my biopsych courses! Very interesting material, and certainly helps integrate the effects of biology and environment on the individual.

Kaitin

Shel - exactly like her mom said! Eats and eats until she is told to stop and never full.

Dancing with a tv show is a good idea. Her mom said she eats with tv all day without school. Maybe I can find a fun tv show even if not about dancing. I know my neices liked cartoons and jump around with cartoons. I like Spongbob . Just the starfish and squid's face makes me laugh. Maybe she will and want to jump and dance.

Kaitin

SxyPorkie. I hope we can have the bond. You are right - it will take time.

Kaitin

Interesting about Prader-will. I hadn't read about this. I know about Turner - we studied it in Biology about genetics, with Klinfelter = xxy boys. Usually they are tall and thin I think. Intersting that Turner is xo and short - I don't know about weight.

I don't know why Katy is mentally retarded. I don't think because Angelman syndrome. Her mom said Katy sometimes is angry and stubborn. Her dad is gone so maybe he is mentally retarded.

Kaitin

Hi, OpheliaSpeaks. What is Biosych? Seems interesting.

Kaitin

Maybe preschool mentality but I don't know. She sometimes wets the pants, can't tie shoes I think, and doesn't talk but hears.

I love dry erase boards and have a BIG one in our living room and small ones in my room. Great idea! I will take a small one and try this.

Kaitin

I don't know about PT. The school has a big yard with a fence like with baseball - I don't know the word and can't use Google with the word. They have recess in groups and teacher's aid for recess. Katy won't play and move - her mom said she just wanders off. I bet PT is boring. I know ST is so boring!

I don't know if Katy is a CPer. My dad knows probably. I'll ask.

Jabbering is ok - I didn't have my HAs so I don't care! Hit you? And creepy staring? No thank you. How annoying. She does hug a lot and SQUEEZE me like a octopus. But she is sweet when she payed attention. And no hitting!