Published Jul 21, 2011
beatrice1
173 Posts
I am doing homecare, taking care of a little girl with holoprosencephaly. She has no communication, not sure how much she understands. she does smile at you but not much more. she has severe chorea spasms. I would feel I should be doing activities with her instead of just sitting with her all day. Does anyone have any suggestions as to what I can do with this little girl.
I do read to her, however, I don't think she understands much. I do ROM exercises with her but it is very hard to do because of her chorea spasms.
I have never worked with anyone with this condition, if anyone has any experience with this population and has any suggestions or advice... please let me know.
Bea
caliotter3
38,333 Posts
I engage the client with a lot of touch, hugging and holding. Can't imagine how frightening and lonely it must be to be locked within oneself, no matter what one's ability to understand.
obenfermera1
32 Posts
First of all, bless you for seeking out more information to help you care for this child instead of sitting idly by as the girl sits in silence....This is a very emotional topic for me as I have a 12 year old with much the same issues as you've described.
Kids with no communication are stuck and can't tell you their likes/dislikes, but with my son we can usually tell if he DIS-likes something based on very subtle changes in body language/face flushing/eye movements. He loves music and the voices of other children, so we usually keep nick jr on TV or a kids music CD or something similar so he's always got something to listen to. There are lots of kids "books on CD" with some cool cartoon character narrating the story.
Again, alot of what we do with him is more based on what we know he doesn't like than what he actively shows he likes, because he's just not able to show pleasure as easily as discontent. Try position changes, sitting up in different rooms of the house if possible for additional stimulation. Hand over hand activities are always good....just coloring a simple picture in a coloring book with a crayon by placing the crayon in the childs hand and holding your hand over theirs to make the strokes, while describing the picture, the colors, even just rambling about the weather (my son is blind). Think of what activities that age child might enjoy and do them "with" her. Splashing her hands in a pan of water or sand for sensory stimulation (also clay, or other textures). There are countless small simple activities you can do with her with hand over hand techniques. Shaking noise-making stuff like rattles or jingle bells. Shaking pill bottles with pills in them or pennies or something small like that makes my son laugh like a fiend, along with wind chimes and noises that are similar. Once you find something that she can show you she likes you'll feel like you won the lottery and you'll find yourself shaking pill bottles all day like a fool like me! Good luck and please let us know how it goes! :heartbeat
Ooops and I completely forgot to mention touch....Caliotter3's post reminded me (thanks cali!) The be all and end all of bliss for my son is TOUCH. Rubbing, patting, hugging, kissing, everything. As an infant, he was inconsolable ALOT, so we were constantly holding, rocking, patting and this has resulted in touch being his absolute number one way of being soothed. I can talk, sing, croon, whatever, til the cows come home, but once I put my hand on his leg or arm and pat or rub he instantly relaxes. Try simple, gentle touches at first as some kids are very sensitive to touch and some don't like it at all. If she DOES like it, do lotion rubs if her family is comfortable with it. She may like strong scented lotions for the olfactory stimulation and she may NOT, especially if she has allergies, just ask the family. Sorry for the rambling!
*obenfermera1 thank you so much for your personal experience and suggestions.
you made alot of good suggestions knowing what these children are like. I do lotion her up and she seems to enjoy that, her spasms seem to get less severe when I do that. and I love the idea of music and books on tapes.
This little girl has a trach and I have a hard time changing the ties (and changing her diaper) because of her severe chorea. although, I am getting much better! any suggestions for that anyone?
please keep the ideas coming... I really want to do the best for this little girl:)
NurseLoveJoy88, ASN, RN
3,959 Posts
Thanks for this thread OP. I just accepted a case with a child that has no communication skills so its nice to see some suggestions here.
yelnikmcwawa
317 Posts
You've gotten a bunch of good suggestions, and I'll just add that she may enjoy water play! I know that she has a trach and I don't know what her other limitation are, but bath and water play in a baby pool, tub, or trickling hose is fun for many children....developmentally delayed as well!
Staragate, ADN, ASN, RN
380 Posts
So many good ideas here. I have some ideas.
* Tactile stimulation. Find interesting things to touch... such as astroturf, slime, dry rice or beans. These things are really stimulating and sometimes calming.
* Music. Try disco, barney, rock, classical, whatever and see if she reacts to it. You might be surprised if she starts grooving to Stayin' Alive.
* Talk through everything you are doing and describe everything. "I am changing your diaper." (show toy- "Blue doll") She might retain some meaning.
* Physical touch... above posters did a great job.
* Same with water. Have a basin with some containers. She can always watch you or she can play.
* If she has voluntary movement, you can set up a PECS system. That means a picture of food for eating, a picture of a cup of water, a picture of a diaper. She might be able to communicate that way. This system is used for Autism and other developmental disorders.
I've worked with kids at a lot of levels. The main thing is to involve the senses as much as they can tolerate and you could get a response.
crb613, BSN, RN
1,632 Posts
I have no advice, but just wanted to say....It takes very special people to do what you do....God Bless you and the children you care for.:redbeathe
txredheadnurse, BSN, RN
349 Posts
If the child has limb flailing in response to being moved for diaper changes, etc. you can position yourself to use your torso or forearm to help block getting accidently hit in the face. Otherwise just try to accomplish the task as quickly as you can because the tactile stimuli of multiple tentative movements usually increases the amount of erratic motions on the childs part. If possible try to secure the new trach ties before removing either of the old ones (that is tie side by side). That avoids the mad scramble to find the trach that just shot across the room when the child jerks suddenly.
Speaking of tactile stimuli rocking and vibrations are other types of sensations to offer the child, temperature differences ( ice cubes in a cup or bowl that she can feel from the outside or even touch, heating a damp cloth which is then placed inside a baggie and wrapped in dry cloth) can be intriguing too. When dealing with the temperature differences only allow brief contact on the part of the child and make sure anything warm isn't too hot of course to avoid burns. I had several patients in the past that loved feeling the warm cloth patting at their hands or back and loved dipping their fingers into the bowl of ice cubes; they used to giggle like crazy.
One last area of sensory input to explore if the family will permit, finances and/or insurance will cover is the use of therapy animals. Trained dogs, cats, bunnies, miniature horses can do remarkable things to expand this childs world, connect with her and add some unconditional love to her life. She might even be able to participate in the therapeutic horse riding programs if available and affordable.
merlee
1,246 Posts
You did not mention the age of the child, or if the child has any other therapy. If there is an Easter Seals/Crossroads agency, they can send someone to the home to evaluate the child and make recommendations for activites and experiences.
I once took care of a child who only grimaced or squirmed - the squirming seemed to be the 'positive' response, but I was never really sure.
This is a difficult assignment, and you show true compassion in your desire to inteeract more strongly with your tiny client.
Best wishes!
Thank you all for some great ideas. This is why I love this site!
My client is 12 years old.
She is wheel chair bound and doesn't have much back/head support. She has a rod in her back, but cannot sit up alone. she does go to pt/ot at the public school. I have observed her doing play activities with her. One activity they did was sand/water play and then painting... she didn't really seem to enjoy it or even understand what was going on. This is why I was looking for more ideas.
... Please keep them coming. I know there are alot of people out there with way more experience than me!