Finally a board that I can relate to

iVillage Member
Registered: 10-21-2003
Finally a board that I can relate to
3
Tue, 10-21-2003 - 10:59pm
Hello everyone. I'm new here and I'm so happy to have finally found you. My DD is 5 now and I have been looking for a messageboard for about 4 years. There are so many questions. My DD is Alicia and she has cerebral palsy; it affects ALL her muscles so she doesn't sit, talk...etc. She does communicate with her eyes and facial expressions, and also picture symbols and computer scanning.

I must warn you this might get long winded!!!! I seem to have a hard time convincing people that Alicia (aka Peanut) is mentally and emotionally on par with the "garden variety" child. Her problems are physical; but people assume she's delayed mentally as well. We (I let Peanut try to answer as well) repeat over and over that "Yes she DOES understand what we say", yes she can make decisions about what to eat,wear... As she has just started school, we have the results of her neuro-pysch tests but I don't carry them with me everywhere.

My DH and I also have an almost 9 month old boy and I was wondering how we should explain things to him, about his sister's needs as he grows. I can see him looking at his sister when there are other children present who are running and playing. At the moment she is dependent on an adult to move her wheelchair, so a lot of times (when I get tired) she can't get involved in the other kids' play. Jordan looks at the other kids like he thinks they're crazy for not sitting in a wheelchair. That's a start on my questions Thanks Shelley
iVillage Member
Registered: 03-21-2003
Tue, 10-21-2003 - 11:41pm

Hello Shelley,


Welocome to the board.



My name is Julie,I am a 27 year old,stay at home mom to 2 kids.A daughter that is 6,her name is Erika. I homeschool Erika.And my son is 4,his name is Jon.He has Global Delays,Development Delays,Speech Delays.He was diagnosised with Mental Retardation last May.He has had 2 eye surgeries.He has Strabismus and Exotropia that deals with his vision and he has a lazy eye.He has low muscle tones also.And he is allergic to all dairy products,so we have to watch what he eats and drinks.And we have to keep a eye on

 

iVillage Member
Registered: 04-05-2003
Thu, 10-23-2003 - 6:29pm
Hi Shelley,

My name is Netti and we have 3 children. My oldest son is 12 and the next son is 8. Our special needs child is Jenna 3. She was born 15 weeks early and has severe CP. She doesn't eat, talk or walk. She has a VP shunt in her brain and is on siezure meds. She has had several surgeries and needs complete care.Jenna laughs and claps her hands and is usually very happy. I am noticing now that at times when she cries she is just bored and is fine when we go to her. She is in a wheelchair and I don't think she will ever learn how to manuver it herself. How do you know what your dd wants? I hope that doesn't sound insensative, I just wish I knew what Jenna wanted or even if she knows what she wants. She is so sweet and loving even if she cannot comunicate with us. She doesn't lift her arms to be picked up but she pats our face and smiles. Do you have a problem with drooling? We have tried several things but haven't found anything yet. The scopolamine patch worked for while but then stopped working.

I am glad you found the board useful. It was pretty quiet for a while but seems to be getting more use now.

Netti and Jenna in South Dakota

iVillage Member
Registered: 10-21-2003
Thu, 10-23-2003 - 7:44pm
Hi Netti,

It's never insensitive to ask questions, it's only insensitive to stare. I bet Jenna does know what she wants. If she can smile and pat your face it means she recognizes the people around her and that's the first step in communication. Alicia uses eye gaze a lot to show us what she wants. It started by continuosly looking at a toy that she wanted to play with, she did that very young. I always make sure that I talk to Alicia, tell her everything I'm doing, why I'm doing it. That kind of stuff. I could always read her expressions really well and we used to ask simple yes or no questions. If she smiled it meant yes if there was nothing that meant no. I kept saying smile if you mean yes and she finally caught on, it helped when I would smile as I said yes. As Alicia started preschool and left me for periods of time we needed something that everyone could understand. So we settled on using her eyes--when she looks up to the ceiling it means yes and she lowers her head and looks at the floor for no. Again it took training and imitation and prompting but she caught on quickly. It made her proud to be able to "talk" to someone without mama around. We schedule her day so that breakfast,playtime, tv time, now school are at certain times. She then has choices within each event. Breaking everything down to yes and no can be difficult but eventually picture symbols can be introduced and she can start expressing feelings. We are in the process of the transition to using picture symbols. As you can see I'm very happy to answer any question I can.

Drooling, we have drooling. Alicia wears bibs almost all the time. We have had 1 Botox injection,back in January and while it didn't totally stop all the drooling it did cut it down a lot. It lasted for about 6 months. It's very expensive so the Drs do a bunch of kids at the same time to cut down on costs. We are waiting for the call for the next round of injections. It doesn't work for everyone but it's worth a try because if it works it works well.

Good Luck with finding a way for Jenna to tell you what she wants. Trust me there is a way we as parents just need to figure them out, by watching, talking and explaining. Hope to hear from you soon. Shelley