Sunday, January 16, 2011

Calling CP moms (or friends w/ CP!)

Several people have commented or FB messaged/posted to me that you could help if I have CP questions. Well, here's my first round :)  Since Wesley is still very new to us and none of our other kids have similar difficulties to him in some areas, I need your help :)

The first area is bathing.  He has spastic CP with all four limbs affected, and when he is either startled, excited or upset he is VERY stiff.  For the last few weeks we've been bathing him practically flat in the tub, supporting his head and going quickly.  For all of our other kids, though, bath time is a FUN time!  We want him to enjoy playing and possibly be in the tub WITH them as well since, yes, we let the kids bathe together.  Right now that's not a possibility for my back or his.

He was getting red marks on his back from the floor of the tub, and we bought an infant foam pad made for bathing newborns to help with that.  It doesn't reach from his bottom/hips to his head, so we still have to hold up his head, but it is at least something.  We are looking to get something immediately and likely won't go through insurance for it simply because of the length of time it would take for them to get him approved and get it for us.  So, we're looking for something that's reasonably within our budget.

Most importantly, we need something so that bath time can be a fun time for him and not a stressful time for us!  I want to also mention that in addition to his spasticity in his legs which causes him to fully extend his entire body, he also cannot straighten his legs when in a seated position.  So some of the chairs which support the entire leg but are at an angle (such as a seated type position but with the legs extended) won't work well for him...

One that we saw is this:  It's like a tumble form almost and looks like it would be easy enough to use in a kiddie pool in the summer time or even in the playroom as just another seating option for him.  The biggest thing I dislike is that it looks very bulky to store.

Another that we looked at is on the same site and is called an "otter" bath chair.  This looks more compact, less comfortable, but likely able to store better and with lots of kids and the desire to occasionally take overnight trips places throughout the year, I'd like that option.

Here is a third that was suggested, the Dolphin chair:

So my question for you all would be whether you have tried these chairs (or ones similar to them) and do you recommend them or not.  Also, if you have a bath chair that you like, what kind is it?  Would you please leave me a link so I can check it out as well?  We are looking for something inexpensive for this initial purchase and in the future may need to do something 'more permanent' or more versatile through insurance, so both the super-inexpensive variety and the ones you really LIKE would be great to know!

Ok, second question is what your kids without verbal language are using to communicate.  We use sign language with our 5 kids with Ds, and will continue to sign to Wesley as well as with our other kids, but since we don't know the extent of his vision difficulties yet... and he doesn't have the ability to form or even approximate most signs to be able to sign back to us, what are your suggestions for communication?  We are looking at a picture system to begin with because that takes away the language issue as well (Russian vs. English).  We have NO IDEA what his cognitive abilities are!  So he may take off with something or we may find that it's too difficult an idea for him to grasp right now.  BUT-- we will start off with the guess that he is not cognitively affected except for an obvious orphanage delay and we'll go from there...

On a side note, we are also beginning to use a picture-based system with Aleksa, even though she's really understanding the language, because she is still only approximating very few words (added "lala" on this week... which is her word for Lynae!).  We're going to start using it more even with Brianna, since she's having so many more complex thoughts that she wants to share but she just can't find the words to get them out there to tell us!

So... what picture-based communication have you used, or if you have another mode of communication, please share that!  We're not looking at purchasing equipment right now, but we do have a small 3x3 communication device that we can personalize with our own words and such.  We also have access to an i-pad that Michael has for work but that is very limited access (unless, of course we win one LOL-- don't forget to enter the Malone family's iPad give away!!).  Otherwise we're thinking about just a notebook with printed out pages with what we are having the kids choose from.  It is a start until we figure out where we want to go with it.  I have a disc of pictures to use with it and many real-life photos to use as well.

Ok, that's all for now... thanks for any ideas, suggestions, and I'll certainly be back for more as we have our doctor's appointments-- especially after the orthopedic doctor when we can know what positioning is 'safe' for him with his hips however they are.  :)


  1. I wish i could help with the bath chair.We are in the same boat with Kaxson(he has severe spastic quad cp).We think our best bet would be a rifton as it has a high leg base on it and our tub is a jet tub and its deep.
    Jaxson was also very stiff and scissored his legs.My husband and I did massages everyday we still do them just not as much.He no longer scissors at all and he isnot straihteneing his legs and stiffening them like he used to do.
    Wish i could be more help !

  2. We use the Rifton as well (looks very similar to the Otter) for our two CP kiddos. But, if you are tall, you do have to stoop even with the base. We are considering purchasing a shower table for the kids as they get bigger. Also, in the Rifton, my son has spastic/balistic movements outward and frequently kicks the sides of the shower quite hard.
    Good luck!

  3. The otter chair looks similar to what I had as a child. Functional but i only wanted to take short baths because it wasn't that comfortable.

    Communication wise I know a few good apps for the ipad but probably can't help much otherwise sorry.

  4. I have the Picture This CD which you can make Picture Exchange Cards (PEC), also a laminator that you are welcome to borrow. Also there is a great site that has free PEC's called Contact Lorna Holland and she can put you in touch with me or I can just get the stuff to Lorna if you like. Brenda Krayzel

  5. What we are thinking about doing initially with Katya is a 3 ring binder with pages slipped into clear plastic page protectors (Wal-mart or Staples has them). We can make basics . . . add more as needed. . . . we don't know if she will ever be able to learn to speak or not. We hope so, but only time will tell. We also know some basic signs and will of course try to teach her those and add to our ASL "vocabularly" if it's proven she can't learn to speak. But pictures it will be definitely at first . . .

    Hope Anne

  6. Bath chairs.
    We have one similar to the dolphin (although it was more then $1200.00!). We got it for our daughter who was VERY low tone, but also used it for our foster son who was VERY high tone and HATED being showered. The only thing we don't like about it is that is it a little low when we sit it in the tub and shower the kids. You have to bend at a strange angle and it can hurt. What we love about it is that it is so easy to take it from bath to shower, that we were able to adjust the sitting angle for each child quickly and easily. That it came with SO many velcro attachments to help hold them in place. We were able to use only the chest strap most days, put were able to pull out extras if the kids were unwell and not able to hold themselves up etc on certain days.

    We just left it in the tub while not using it, and if we needed the tub it easily leaned against the wall, pretty out of the way, until we were done. We were also able to lay it out flat, stick it in the back of the van, and take it with us to the beach and let her sit with the waves hitting her feet, but keeping her safely away from them getting anything else.

    We did some basic work with switches for communication, but didn't have great success with it. A single switch which completes a single task. Personaly I felt that even with a "low congnitve level" we needed to offer her something that gave her multiple choices if we wanted to see what she was capable of and if we wanted her participation. "They" disagreed. Switches and pictures are where I would start with Wesley.

    Good luck, hope you are able to get some good advise on the communication:)

  7. My sister has severe spastic CP and is also non-verbal. She can gesture with her whole arm and plant her fist on "Yes" or "No" labels if they are taped to her tray. Also if we ask her a question we will touch one hand and say, "This is yes" and the other saying "This is no". She can then raise the appropriate arm to indicate her choice. She can nod and shake her head but this is a bit more difficult for her and harder for us to read.
    Bathtime: Have you or your husband tried bathing with Wesley? You'd have to have the two of you in the bathroom just in case he has a fit and has to be hauled out :). But I wonder if this would work as he would be held, which he likes, and have the warm water to relax his little body.

    Marjan (not James:) )

  8. We love our Otter. Bathing IS hard on my back, but I don't really know that there's anything that can fix that. The Otter is very comfortable for Marissa and very adjustable as well. As you said, it's nice and compact, easy to store and travel with, too. As for communicaiton, Marissa is still quite young, has CVI and low cognitive ability. However, we have kind of gone with her lead in terms of signs. She pounds her chest for "more" (she has a left hemiparesis so doesn't use her left harm) and moves her arms down to her lap for "all done" (instead of the traditional up in the air). Anything will work as long as it's consistent.

  9. My little cousin has global CP, and my auntie tells me that none of the bath supports that she has tried have been comfortable for him, and the easiest way she's found to bath him (and so he can splash a bit and have fun too), is for her or his dad to actually get in the bath with him, and hold him themselves. Which probably isn't the answer you are really looking for.

    He's 9 now, and he does have a shower table, which is much easier than a bath.

    He hasn't got enough control of any part of his body to use communication devices, or even to talk, but his mum says a lot of the more able kids at his school use BIG flash cards with bright pictures on, without any words at first. And he is able to communicate, he can make noises that indicate yes/no, and if you are close up to him and point at things he can generally express which he wants, like "this blanket or this one"?

  10. on the ipad the proloquo to go is a great app

  11. You've probably already figured this out, but here are a couple more ideas for bathing and dressing: use rotation of his limbs to relax and stretch (for example, if his legs are scissoring, slowly rotate the foot in and out, as the leg relaxes you can move them apart). Slow movements will always be better than fast. Good luck!

  12. Maybe try a folded bathtowel under him in the tub for cushioning. Our little one has quad cp and is physically quite severe, but she doesn't seem to get red from laying in the tub. She loves to splash after I have bathed her. To help with spasticity, she is given oral baclofen and then gets botox shots every three months. We have seen huge results with this! Our little one seems quite on target cognitively, but can only answer with approximations that we understand as yes and no. I started off asking her to kick when I asked her yes or no the kicking was for yes and that is how we realized she understood lots! I make communication cards by googling pictures that I need and putting them into little photo magnet holders and then using a magnetic dry erase board. It has been so so in working as it is much easier to ask yes/no questions. We do hope to get an ipad at some point.

    Dannette (mom in Kansas who found your blog)

  13. my josie came from africa with spastic quad cerebral palsy. unfortunately she had a lot of stiffness and spasms and we found out that she had infantile spasms epilepsy. she would have hundreds of detrimental mini seizures a day where her head would drop if she was trying to hold it up and her arms would flail like a startled newborn. she would also have what the call clonus or like a vibrating of her extremities very rapidly. she goes to a cp clinic at our childrens hospital and she was put on baclofen for spasticity, phenobarbitol for seizures (there are other options but this one worked best for her) and valium for clonus/spasticity/seizures. she also unfortunately had to have a feeding tube, and because we didnt know that she had an underlying metabolic disorder that caused rickets, they accidentally broke her leg during her feeding tube placement surgery =(

  14. as far as bath time we are kind of in the same boat looking for a better option. we do have a tumble form blue chair that im thinking about trying in the tub, only thing is the straps will take a while to dry. things were a lot better after josies spasms and seizures were treated. although it made her very drowsy at first but she got used to it. it is also important to see a dr. versed in cp and to make sure his hips arent displaced. our aidens was starting to come out and he had surgery at shriners and now they are great. josie's right hip is out of the socket but she is too unstable otherwise due to her kidney condition and seizures to have the surgery =( it doesnt seem to bother her though and she is very happy =)

  15. If you haven't already, research Cortical Visual Impairments. It is likely Wesley has one given his global developmental delays. With CVI the way he sees can change from minute to minute and day to day. If you are going to use pictures make sure you use larger real pictures (not picture symbols) on a white or black background. Start by pairing pictures with real objects. It is actually best to start with the real objects and then add the real pictures once he has mastered choices with objects. He could choose by smiling when he hears the right choice, looking toward the right choice, moving an arm slightly, etc. You know him best. The important thing is to react and allow him to have made a choice even if you aren't sure that he really meant to do it. This way he will learn that his actions can control what happens. Start with two choices, you can work up to three later. If you have access see if there is a assistive technology library where you could check out a switch to try with Wesley. He may be able to use a head switch, toggle switch, etc. and are two great sites with free simple switch activated programs. Send me an email if you ever want to talk.

  16. Unfortunately I do not have a bath chair resource specifically b/c we don't use one, however I thought i'd pass along some general resources that were helpful to me. I have liked the following books that also contain a lot of resources and web links:
    1) "Children with Cerebral Palsy- A Parents' Guide"
    2) "Teaching Motor Skills to Children with Cerebral Palsy"

    and these websites:
    2) under "preg and parenting" they have well organized message boards for CP, dev delay, most anything you can think of.

    Re: communication... we were in the same boat for a while regarding poor vision plus poor motor plus non-verbal. The most success we've had is teaching him one sign, "more" because motorically it's easy. But this took over a year. He now uses that one sign to mean I want more, I want, help, etc. and usually i'm able to figure out exactly what he wants from the context. The hard part is now that he knows the sign, he doesn't understand "no" or "wait"...yikes. :)

    In school he is using an augmentive communication device that reminds me of an iPad however the school sent notes home asking parents not to use the iPad at home because two sets of systems would confuse the child. However I know other parents who are using it with success. I think the electronic device works for Aidan because he does seem to have better receptive language, responds to motivators (like food), and touching the screen is the least amount of physical effort.

    At home he communicates just with the "more" sign, looking at/reaching for what he wants, choosing between two concrete objects by touching the one he wants (which snack? which shirt? which toy? etc.) At this time I am baffled as to what he does/doesn't understand because on the one hand he'll sign he "wants" to "go upstairs and take a nap" when I ask. Yet he does not shake his head yes/no or imitate simple things like a wave hello/goodbye.

    Signing as a system has not worked for us because it's just too hard for him. He does not seem to remember or be able to do any signs. However they still practice signs each week in school and use the Baby Signing Time system ( Also PECS did not work because he is still very much in the oral phase and still puts everything in his mouth. I think he doesn't understand he's supposed to "use" the cards and wants to just chew on them.

    Hope some of those help!

  17. I used one like the Otter at a residential school where I worked. They only issue I noted is that for some kids with spasticity, if they got excited while in the chair, they were more comfortable with a light-weight towel under it to pad little bttoms and hips as well as prevent rubbing body parts against the mesh seat. Easy to clean and to move out of the way. :)