Having difficulty entertaining kid with rett syndrome

[Crystal-Wings]

Hi I was wondering if anyone on here in home health nursing has any experience with pediatric clients with Retts syndrome. I've had the same patient for about 6 months and I've yet to find a way to entertainment the child. She is nonverbal, wheelchair bound, and can't use her hands. I've tried suggestions from my nurse manager such as reading to her, playing with musical baby toys (which she enjoys sometimes), helping her color (since she can't hold the crayon alone), and play-doh, but she doesn't seem interested in any of this. The parents won't let me take her outside for a walk (which is another story; this poor kid hasn't been outside for 4 months!).She watches tv, but the mom only let's her watch one hour and my shift is 8 hrs.

I don't know what else to do! If I'm bored, then this kid definitely is. I try to suggest new activities at her level of abilities but the mom usually says no.

I feel bad for her, but I really don't know what else to do. Anyone have any suggestions???

[Crystal-Wings, LVN]

I've worked with a young woman with Retts in her home and again when she moved to the group home I worked in. She had limited functional ability with her hands and typically would lightly clap or wring them most of the day. We had sensory bins filled with pasta, rice, cotton balls, etc that she enjoyed even just laying her hands in. We would play music a lot. We would do arts and crafts hand over hand and finger painting...even feet/toe painting. She was a young woman so we tried to do age appropriate things like pedicures, looking at magazines, and doing different hairdos. Water play and walks were her favorite things. It's unfortunate you can't take her for a walk. It would be good for both of you. Hopefully something can be worked out or you can find another job. I can't imagine how long those 8 hours feel. Good luck!

Pedicures? That sounds like fun! This kid is 12. The mom is a neat freak and would never allow that or finger painting. I tried the sensory thing with the beans but she just doesn't seem to be that into it. I'm getting ready to learn about ventilators because there is a night shift case for a kid that has one. Ya, it would be mostly sitting, but at least I'd be doing actual nursing stuff, and I wouldn't have to rack my brain trying to entertain him. I'm a little nervous about it though to be honest. From a past experience with a different company (I almost have a year of experience but didn't then) who promised they would give me a 6 month training period and never did, I was thrown into cases that were too difficult for a new grad. So I promised myself if I did home care, I'd never take anything challenging again. But now I'm bored silly, so unless I try a new challenge I'll be stuck here. Building self confidence is hard for me, but my nurse manager seems pretty supportive of me trying it and she's a decent person to work with (which can hardly be said for most of the nurses I've worked with) so i'm just gonna try it.

[Anderson11]

I follow various medically fragile kids on FAcebook, the parents can really tell you a lot - they give you a run down of heir day and it really helps to understand the kids better and also come up with ideas for fun and play. One girl with Rett I follow communicates using something called a Tobi, she is non verbal and the Tobii registers her eye movements, if she stares at something on the screen longer the Tobii recognizes this and allows her control this way, she can even play little games with it and watch movie etc. if possible you should talk to the girl's OT and get some idea's from her, there's likely a lot of sensory play that can be done in he home - crafting touching different materials (even if you're actually putting stuff together for her she can touch and discover through that), also water play may be fun if you could bring a small station next to her with water so she can feel the water - she doesn't need to be in the bath, a large bowl of water with a couple of toys in might be fun. Painting could be fun. This girls OT may also be able to provide some toys and equipment to facilitate play. Physical therapy should be able to suggest some fun excercises to do - even from sitting position. A lot high needs kids go to school and stay home when they're not well, I agree with the poster that she should be in a education program. Go on FB and follow some kids with Rett - I get so many ideas and so much understanding from there.