Working with Children with Severe and Profound Disabilities

Stephanie, I have a two year old rett's girl in therapy. She doesn't have any words but she does vocalize, so I try to encourage continued and varied vocal imitation. she has great eye contact and I try to make sure she always responds to her name. I work on joint attention, "where's mom, "where's the kitty". she also loves balls. she can grab it and attempts to roll it back. she also visually tracks it if it rolls past her. I do hand over hand with her in putting plastic beads together and pulling them apart. she is not interested in books but we are trying a Go-talk AAC to work on picture discrim even if we have to this hand over hand. We are just starting this. If she looks at something in the room I point to it and name it. I like Jennie's idea of the "me" book. I think this child requires continued speech therapy because it is the job of the SLP to figure out how the child is communicating even if minimally. We need to be there to support her efforts. good luck!

Stephanie, I have a two year old rett's girl in therapy. She doesn't have any words but she does vocalize, so I try to encourage continued and varied vocal imitation. she has great eye contact and I try to make sure she always responds to her name. I work on joint attention, "where's mom, "where's the kitty". she also loves balls. she can grab it and attempts to roll it back. she also visually tracks it if it rolls past her. I do hand over hand with her in putting plastic beads together and pulling them apart. she is not interested in books but we are trying a Go-talk AAC to work on picture discrim even if we have to this hand over hand. We are just starting this. If she looks at something in the room I point to it and name it. I like Jennie's idea of the "me" book. I think this child requires continued speech therapy because it is the job of the SLP to figure out how the child is communicating even if minimally. We need to be there to support her efforts. good luck!

Thank you each for your comments and feedback. Each of you gave me wonderful "food for thought"!

Just for the record, I have no intention of discharging this little girl. Her communication skills are extremely low and limited; however she is purely an oral eater (no tubes) and I feel that it is my job to help keep her safe by giving the family ways to ensure she is using tools that are best suited for her. The situation is very much what David described in his comment about the child he worked with with Rhett Syndrome.

Mom needs and relies on our recommendations for how to address walking, communication, feeding, etc. I think that the outlook David described regarding goals and therapy "to reflect the fact that her skills would deteriorate, so my focus was to anticipate problems that were likely to develop" makes a ton of sense. In addition, the comparison to the geriatric population is also a very good one.

Thank you again for weighing in - This has helped me to better understand my role. I feel as though I have a new and improved focus!

Thank you each for your comments and feedback. Each of you gave me wonderful "food for thought"!

Just for the record, I have no intention of discharging this little girl. Her communication skills are extremely low and limited; however she is purely an oral eater (no tubes) and I feel that it is my job to help keep her safe by giving the family ways to ensure she is using tools that are best suited for her. The situation is very much what David described in his comment about the child he worked with with Rhett Syndrome.

Mom needs and relies on our recommendations for how to address walking, communication, feeding, etc. I think that the outlook David described regarding goals and therapy "to reflect the fact that her skills would deteriorate, so my focus was to anticipate problems that were likely to develop" makes a ton of sense. In addition, the comparison to the geriatric population is also a very good one.

Thank you again for weighing in - This has helped me to better understand my role. I feel as though I have a new and improved focus!

http://www.lburkhart.com/haacrett.html   ...good info on Augmentative Communication:

Applications and Practical Strategies for Children who have Rett Syndrome

Hi Stephanie et.al.

I have to disagree somewhat with Bob Roza's comments.  I agree strongly that we need to deal with these issues in an ethical manner.  What I disagree with is assuming that because the child's skills are deteriorating as a result of her disorder, any therapy is by definition maintenance.

I have also worked with a girl with Rett syndrome, and faced exactly the same issues Stephanie is talking about.  I kept seeing her until the age of 3.  My goals were written to reflect the fact that her skills would deteriorate, so my focus was to anticipate problems that were likely to develop.  This was mainly in the area of feeding issues, but also in communication.

I ended up addressing things like the need to start thickening liquids, changing cups, whether it was appropriate to start using a bottle again, what food textures were appropriate, etc.  Because she had developed some gestural and a little picture communication, I also was involved in helping the parents recognize the communication she was still doing.

To my mind these are not "maintenance" issues but rather therapeutic interventions similar to those which our colleagues in the geriatric area deal with every day.  We have the added responsibility of working closely with the family, a totally different relationship from the one they have with caregivers in a nursing home.  Do these areas require the skills of a trained therapist?  As I see it, definitely.

As always, thanks for the opportunity!

It is often heart breaking to be confronted with a progressive condition, since most of us - "helping professionals"  -  are in this field because we hope to achieve improvement. Even our documentation forms are almost always "progress reports". So what do you do when you cannot realistically hope for progress? You should think of your services as enhancing the quality of life for the girl and her family. I have worked with girls with Rett syndrome three times. The best support and resources can be found through the International Rett Syndrome foundation http://www.rettsyndrome.org. You are correct that safety in eating may be the first goal. You may also begin to investigate options for AAC for the time when the girl is no longer able to verbalize, if his time comes. Educate parents about possible visual strategies to express choices through yes/no symbols, picture boards and other low-tech options. It is very difficult to ring up these issues, but gently discussing these options and  watching videos (lots on YouTube) of children using AAC may hel this family prepare for the next phase. Also building a repertoire of pleasurable activities, books, songs, games may serve this girl well in the future when she may not access them independently but may be given choices of such activities to give her pleasure, a give her parents a way to keep their connection with their daughter for years to come. Best wishes!

Hi Stephanie,

Don't give up yet! While you may not achieve huge increases in her skills, there are still plenty of things to try and you're still a valuable support for her family.

I'd possibly look at her understanding of cause and effect and communicative intent. If she isn't communicating with intent using non-symbolic methods (ie body language, cries, vocalisations etc), then I'd try starting there using highly motivating activities and toys (look at her sensory preferences for sensory type toys if it's hard to find other motivating activities). I'd also work with her parents to build activities into their day for developing her understanding of cause and effect.

Another idea if she is struggling with pictures is to try real objects or object remnants (e.g. a chip packet, bubble want, car keys) for choice making.

Something I often make in collaboration with parents and caregivers etc is to make an 'all about me' book. I usually write it in 1st person as though the child is telling whoever is reading the book about themself. Some ideas for pages: "about me", "my family", "I like...", "I don't like...", "tips to keep me safe", "tips to help me do my work", "tips for dinner time'. An important page to have in it is "my communication dictionary" that has a basic "when I do this, it means this" format. This page is great because it gives outsiders information to interpret some of the things she does, and gets parents thinking about how she is actually communicating.

Hope these ideas help!

Stephanie:

My first thought was is this child carried by insurance. If YES, and the insurance has "capped" then you have your answer, you would have to drop because the child has plateaued. If this girl is close to 3, then she can be transitioned to her local school district where they can do a maintenance plan. Another option would be seeing this girl on your own and having the parents do a private pay. BUT, the bottom line is that this girl is regressing due to her illness. As Spch Path's we can't continue seeing a client in the hopes of curing them. If the potential is not there, then the decision would be to counsel the parents weeks in advance before the drop date to prepare them. Like I said, this is a rough situation but you HAVE got to address this situation with ethics and integrity.