cleft palate question

mesmom2011

My cousins DS (14 months) has a cleft palate.  He has had 2 surgeries to correct it and the Dr. plans to do one more.  I was talking to his grandmother yesterday and she mentioned that they are worried because they can't get him to put anything in his mouth (mainly food as he will not self-feed at all).  She said that they've always smacked his hands when he put anything in his mouth because the Dr. told them that he couldn't put anything in his mouth and they didn't know what else to do.  I feel so bad for this poor little guy.  Does anyone have any suggestions that they can use now to help him learn to self-feed and do normal baby things that he's been punished for in the past?

mesmom2011

They do have OT, PT and speech.  He also does not sit up, cannot crawl or walk and is not talking or really babbling.  Everyone who has evaluated him says that his only issue is his cleft palate.  His mother has told me several times that she believes that his mobility issues are a result of him being spoiled because they held him too much after his surgeries.  They also describe him as lazy and stubborn. 

I guess I'd just like to be able to offer valid suggestions when they speak to me about him.  Personally, I find many of their methods (spanking, smacking his hands, calling him spoiled) to be harsh and ineffective, but I don't have a special needs child (although I am a special education teacher in a self-contained special education classroom).  I've been approached several times and asked for advice and I just don't know what to tell them.  Obviously they aren't getting the help that they need from their team or they wouldn't be using some of the methods they are using (or they are ignoring their team).  I just feel for this little guy who is so close in age to my DD. 

I would appreciate links to resources or any feedback that I may share with them. 

rsd12

I highly doubt this is what the craniofacial team recommended, as well as the OT, SLP, and PT have not provided guidane. But it is common for cleft kids to be more sensitive to things in/near the mouth (duh). You should tell them to contact their craniofacial team for feeding assistance/aversions. Most teams provvide free of charge no no's or arm restaints to keep hands away from the mouth post surgery, because they can not have fingers, utensils, or spouts post surgery..... this is atually not uncommon. We weree very lucky with our son who has no issues with even going to the dentist, where this can be extremely diffiult for kids born with a cleft.

mesmom2011

I did think of arm restraints.  That would be better for when he has surgery again.  I'm sure you are correct that the professionals wouldn't tell them to go about it this way.  They are big on spanking and I don't think they can come up with any other ideas for either their daughter (who doesn't have any special needs) or their son who obviously does.  Thanks for your input. 

SoundersChick

There is absolutely no way that the cleft team would tell her to swat his hands when he self fed. I'm thinking she did that because it was "easier" than having to teach him to do what the cleft team actually wanted her to do.

She just really needs to come up with some positive reinforcements to kind of bribe him so he gets used to the idea that self feeding is okay. 

mommytoconnor

Your cousin needs to get professional help for this.  She needs to seek out speech therapist and maybe occupational therapist for feeding therapies. They will work with him to help this. Quite honestly, I am surprised that he hasn't had these specialist working with him all along.  He really should have had these ongoing feeding therapies to help him learn to eat/feed.