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: http://www.especialneeds.com/childrens-chaise-child-seat.html 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 http://www.especialneeds.com/bath-toileting-diapers-bathing-bath-shower-chairs-otter-bathing-system.html 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: http://www.adaptivemall.com/wedobach2.html
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. :)