Median Cleft Palate Syndrome - Mothering Forums

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Old 04-28-2014, 01:04 PM - Thread Starter
 
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Hello,

 

I have a 9 year old son with Median Cleft Palate Syndrome.

 

This is a rare condition where in Median Cleft Palates, the cleft continues into the brain and causes a variety of issues.

 

Are there any others out there dealing with this? Was hoping to make contact with others and share/learn.

 

Thank you.

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Old 05-03-2014, 06:53 PM
 
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Welcome to Mothering. It looks like your post might have been missed so I'm bumping it up for attention. :bump: Anyone have experiences to share?


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Old 05-11-2014, 04:46 PM
 
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Not the same diagnosis, but lots of medical problems stemming from an anoxic brain injury.  I have found a lot of support at this site, even though most of kids don't have a similar diagnosis.


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Old 05-13-2014, 09:41 AM - Thread Starter
 
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Thanks,

 

I appreciate that there is help here, and have been reading through a lot of the posts.  Most of my son's symptoms are well represented here amongst the various issues we are all dealing with.

 

My son has a series of Lipomas, or fatty tumors, on the mid line of his brain, where the two halves join. The tumors are filling the space left by the cleft palate that continued into his brain. Everything on the mid- line of the brain is at risk, and his pituitary is impacted causing hormonal imbalances. My son's condition results in a series of symptoms such as learning and intellectual disabilities, motor skills issues, verbal and communication issues.He has been diagnosed with Autism, and had many of the classic autism behaviors earlier (hand flipping, rocking, no eye contact) but these seem to be slowly disappearing.

 

We have seen lots of progress, from being mostly nonverbal up to about age 5, to being quite verbal now. He cant quite read yet, but he seems very close to it. He wants to interact with children his age, but lacks strategies and confidence.

 

We sort of treat his disability as brain damage ( as indeed with Median Cleft Palate Syndrome, it is) So we do a lot of brain training exercises, and we see a lot of progress from them. We believe, but have no real evidence, that his brain is learning to make better use of the available pathways between the tumors. Its difficult to know what is the MCPS and what is just Autism.

 

Just a few weeks ago, he said "I love you" for the first time. That was really wonderful to finally hear. We are not sure if he completely understands love, but then I am not sure that anybody really does.

 

Our latest effort is to try and find a group of children his age or slightly older, and ask them to film a series of scenarios for us, in which our son walks up to them and has to ask to play with them, or to join in a group activity. The children react positively, and he gets to play ball, tag, etc....we want to film 4 or 5 scenarios that are short 3-4 mins, upbeat and show him having to proactively initiate contact.  We would then put the video onto his IPad, so he can watch it again and again ( he loves to watch himself in videos).


Hoping to provide him both the strategies and the positive reinforcement for initiating contact with others. We kind of feel we need to help him become comfortable making connection soon, as it gets more difficult as they get towards middle school.

 

Its been a long strange trip thus far, the highs and lows are both excruciating and sublime, but I guess you all know that.

 

J

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Old 05-14-2014, 08:13 PM
 
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I love the video idea.  Have you tried contacting your local cub scout pack?  One of the achievements that cub scouts can earn is Disabilities Awareness.  I got to teach a great group of boys about kids with disabilities, and they were more than willing to help me do things.  These would be in the right age range.  I always think it is important for kids to understand disabilities and that their is a broad range of abilities in special needs kids.


Wife to M , Mommy to DS aka Captain Obvious  (06/06) and DD aka Lissalot  (03/09, anoxic brain injury)
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Old 05-15-2014, 10:46 AM - Thread Starter
 
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Thanks, I really think its the kind of thing he needs, as he wants to interact, its just the how that needs working on

 

I first approached the schools, hoping there was a service club at the High School Level that would be interested, but as the year was drawing to a close, they were busy.

 

Then I tried a local nonprofit that works on various autism programs, and they said they might have a teen group that would be interested, but that it would be the end of may before they would have time to look at the project.

 

If I don't hear from them I may well try the Boy Scouts. My son is a Bear Cub,and participates to the best of his abilities, he cant really handle the big loud chaotic pack meetings but does well in the smaller setting of the Den meetings.  There may be an Eagle Scout Project in it, or as you said a badge for the old Boy Scouts. Thanks for the suggestion.

 

I am hoping that if we can work it out, the day could be made available to other children in need of socializing. They could just run through the scenarios one after another.

If we had someone film and then edit it, we could supply a DVD copy back to each child.

 

Thanks again,

 

J

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