Help with severely disabled child

[Unregistered]

I have not dealt with a child who has Rett Syndrome before. She has absolutely no motor skills, cannot speak, is on a feeding tube and incontinent. I don't know if she even understands anything I say to her. There's no response of any kind to anything.

Can somebody please give me some ideas on how to reach her? Or can she be reached? Her parents are very supportive and say she responds to them, but so far I haven't seen anything and I wonder if it's wishful thinking or if she can only respond to very familiar stimuli. She's only 9 and I desperately need and want to help her. Ideas? Suggestions?

[BLBO]

I looked up rett syndrome and found this fact sheet. There is a list of contact info. at the bottom of the sheet for obtaining further information.

http://www.ninds.nih.gov/disorders/rett/detail_rett.htm

Hope this helps.

[Unregistered]

First of all, you need to figure out how SHE communicates. Verbal input alone may not work. You may need to show her pictures or actual objects representing what you are asking her. Watch her closly for a bit in various situations or talk to her parents....how do they think she responds to them. Does she use eye gaze (just simply looking at what she wants in response to a request), does she turn her head to what she wants or away from what she doesn't want.....if you have a "no" response (turning away) then you don't need her to develop a yes response....it is simply not showing a "no" response. She may have developed a way to say yes and know by using facial expressions. I have had students who opened their mouth for yes and scrunched up their mouth for no or raised their eyebrows up for yes and looke down for no. Is there a speech therapist involved....they may not have had a child like her either but they have the knowledge of how preverbal language develops and can try some things.

[musicllover]

I have not dealt with a child who has Rhett Syndrome before. She has absolutely no motor skills, cannot speak, is on a feeding tube and incontinent. I don't know if she even understands anything I say to her. There's no response of any kind to anything.

Can somebody please give me some ideas on how to reach her? Or can she be reached? Her parents are very supportive and say she responds to them, but so far I haven't seen anything and I wonder if it's wishful thinking or if she can only respond to very familiar stimuli. She's only 9 and I desperately need and want to help her. Ideas? Suggestions?

I've never worked with the Rett syndrome either, but I have seen music reach a child that no one knew could talk. He was severally mentally retarded, (or the other way around, no one could agree) non verbal, couldn't walk or crawl, and had autism tendency and on top of that he had CP, so he had several diagnosis. If you can get ahold of a music therapist they could show you more. I only did what little I had research on the net. I love music and I play a guitar and sing, so it was a natural for me. I began by singing and playing a songs that the child might find familiar...., he enjoyed the music, from the simple body response of turning to me when I played. I also noticed a change in his eyes. I would then talk in a sing song fashion..the first sound higher and the second sound lower.Ma-Ma, Da-ddy eventually adding the names of his other siblings. (if you know anything about a piano I used the G and E) I'd heard somewhere we all speak in the Key of G so I used those to keys. Can you remember the na na na na booo boo, stuff from the play ground....that is the same idea. After several months, he begin to mimic me, not always saying my words but grunting and then getting very very excited and flapping his hands, he'd grin big and spinning in a circle because he KNEW he'd done something great. HIs mother cried when he would sing MA MA the first time. I had it recorded too...That response was all the encouragement I needed. There is POWER in music. Try different styles of music on CD, everything from nature sounds to Polka, Opera, Jazz..., something might appeal to him.
Keep me updated.
musicllover

[Unregistered]

She does like music, but in the last 2 years has regressed even more. There's absolutely no response to anything. The only way we can tell she enjoys something is that her eyes are open. They're closed probably 98% of the time. About all we can do for her is talk or sing to her and play her music and have a computer with an interesting screen saver that she'll occasionally watch. Her eyes don't really track so it's hard to know if she IS watching, but at least her eyes are open. I feel so sorry for her. It's a terrible, terrible disease.

[Unregistered]

I'm surprised that chocolate person hasn't posted that it's the parents fault for not teaching her how to behave in class!

[Chocolate_New_Orleans]

I'm surprised that chocolate person hasn't posted that it's the parents fault for not teaching her how to behave in class!

no, because unlike johnny, who is failing and needs an IEP simply because he won't sit down in class or Johnny Sr won't enforce rules and standards, this student sounds like she needs the extra accoms.

[musicllover]

She does like music, but in the last 2 years has regressed even more. There's absolutely no response to anything. The only way we can tell she enjoys something is that her eyes are open. They're closed probably 98% of the time. About all we can do for her is talk or sing to her and play her music and have a computer with an interesting screen saver that she'll occasionally watch. Her eyes don't really track so it's hard to know if she IS watching, but at least her eyes are open. I feel so sorry for her. It's a terrible, terrible disease.

Is there possibility that she could try pushing the keys on a small electric key board? You may have to help her push the keys at first, even if you can't play a song you can play single keys, or play ever other key and you'll make a chord (except on the natural half steps where 2 white keys come together.) If she enjoyed music once and she still does, try to challenged in a more mental way even if using her hands is difficult let her try to make her own music. It might seem she isn't paying much attention but somewhere in her mind she is. I honestly believe that person with any kind of PDD have working brains but something stops them from having any output..... What styles of music have you tried? Is she receiving physical therapy?

I understand, Its cases like this that breaks your heart, but I am a firm believer that God created each of us for a purpose, its the nasty disorders and diseases that mess all that up. Its up to those who have the desire to help other find what that purpose is, no matter what the disorder is. I kinda see it like guiding a person through a maze, you go certain directions for a while then you come to a road block.Then you back up and try a new direction, till eventually you find a better path. There may be several road blocks that have to be overcome, worked around, but there is SOME way of breaking through.... But you can't stop trying, the idea is to keep moving no matter how many times you feel like you've retraced or had to push your way through. My heart goes out to you, and my prayers.
musicllover

[Unregistered]

She has absolutely no motor skills. She's unable to move any part of her body except for blinking her eyes. We used to take her hands and try that type of activity or have her feel different textures and use finger paint with her. Now, though, her hands are in heavy braces to prevent the curling that's so common with Rett. I don't know how long she'll be wearing those. I also put sleigh bells on her wheelchair and make it a point to jingle them every time I can. There are 2 others in this classroom, both in wheelchairs, but able to navigate just a bit. They also ring the bells and it seems to make everybody happy.

We also have a trained dog we use for therapy. Before the braces on her hands, I DID notice a very slight twitch in her fingers when we'd put them on the dog's head, but that was probably a year or so ago and it only happened a few times. Since she's regressed I don't know if she's lost absolutely all ability to move. It's so hard to know what, if anything, she can do.

She is in physical therapy 3 times a week and her parents work with her at home. The therapist has told us that swimming seems to be something she likes...at least her eyes are open the entire time she's in the water and her parents say she will sit and watch fish, so as soon as we can find funding (IF we ever can!) I'm going to get a fish tank for the classroom. Some parents have contributed, but a large tank with fish is expensive and time-consuming. Just what I need, hmm? :-)

Thanks for all your help. I probably sound negative with the suggestions since we've tried so many things, but I just keep hoping that maybe there's something we've missed. It breaks my heart to see a child so completely disabled. I have have many, many profoundly disabled children over the years, but there was always something or some way to get through before and this time it just seems there's nothing.

[musicllover]

She has absolutely no motor skills. She's unable to move any part of her body except for blinking her eyes. We used to take her hands and try that type of activity or have her feel different textures and use finger paint with her. Now, though, her hands are in heavy braces to prevent the curling that's so common with Rett. I don't know how long she'll be wearing those. I also put sleigh bells on her wheelchair and make it a point to jingle them every time I can. There are 2 others in this classroom, both in wheelchairs, but able to navigate just a bit. They also ring the bells and it seems to make everybody happy.

We also have a trained dog we use for therapy. Before the braces on her hands, I DID notice a very slight twitch in her fingers when we'd put them on the dog's head, but that was probably a year or so ago and it only happened a few times. Since she's regressed I don't know if she's lost absolutely all ability to move. It's so hard to know what, if anything, she can do.

She is in physical therapy 3 times a week and her parents work with her at home. The therapist has told us that swimming seems to be something she likes...at least her eyes are open the entire time she's in the water and her parents say she will sit and watch fish, so as soon as we can find funding (IF we ever can!) I'm going to get a fish tank for the classroom. Some parents have contributed, but a large tank with fish is expensive and time-consuming. Just what I need, hmm? :-)

Thanks for all your help. I probably sound negative with the suggestions since we've tried so many things, but I just keep hoping that maybe there's something we've missed. It breaks my heart to see a child so completely disabled. I have have many, many profoundly disabled children over the years, but there was always something or some way to get through before and this time it just seems there's nothing.


I am so sorry, I lost a student last year because his profound disabilities, he was only 12 but I see it as a blessing too, he is not longer suffering. I understand your negativity, I'm dealing with a very capable student who simple doesn't want help....which is another form of handicap.

With all the advances in the technology world, is there some kind of device she could use to communicate with by blinking her eyes or puffs of breath, you can at least investigate it. I know my state has technological grants so it can help with the expense, find grants through your local phone, electric, company and I also have found a site on the web for those who want to donate to a worthy cause, its at http://www.donorschoose.org/about/about.html?zone=0) . Maybe someone there could help.
musicllover

[Unregistered in LA]

I have a student with Rett's, but her symptoms are not as severe as yours. She's alert and aware, but has limited functional use of her hands--does the wringing a lot. She uses eye gaze but it's not always reliable, due to involuntary head and eye movements. She's able to walk with assistance and can take several steps independently on days when her balance is good. Her ability to participate in classroom activities varies from day to day, depending on her physical state at the time. Some days she's right on target with attention, focus and hand movements. Other days, she's all over the place with her head movements, eye gaze and hands. Some days she's happy and laughing. Other days she cries constantly. We just pray for good days and try to do as much as possible with her on those days. On her "off days", we try to keep her comfortable and happy--usually by listening to her special music. It's heart-breaking, because I feel like she's such a smart child, but she's literally trapped inside her own body. I do believe that God created each of us the way we are for a special purpose. My little Rett angel has brought so much joy to our classroom and school. She's such an inspiration to everyone. Being around her makes me appreciate simple things like being able to pick up a french fry or sing along with the radio. I hope and pray that she doesn't experience further regression as she gets older.