Where to go from here

[tgladis685@aol.com]

HI,
Our son is 10.5, aside from a bilateral cleft lip and palate, he has autism, a rare genetic syndrome, cognitive impairments, apraxia etc.
He had a large cleft and still has a fistula about the size of the tip of my index finger.
He had a pharengeal flap built five years ago, but had it taken down a year later due to sleep apnea, also had tonsils and adneoids removed.
Needs expansion before fistula can be repaired but behavior is a problem.
After many years of speech therapy finally has some speech, but intelligibility is poor due to (I believe and some SLP believe structural problems in mouth) Any ideas? Any suggestions on teams experienced in dealing with children who have multiple problems.


Thanks,
DG
problems beyond

[ldarnell92@hotmail.com]

WOW, YOU SOUND LIKE SOME-ONE I CAN RELATE TO, MY DAUGHTER WAS BORN WITH DOWN SYNDROME, CLEFT LIP AND PALATE AND HOLE IN HER HEART! WE REPAIRED THE CLEFTS AT 3 WEEKS OLD AND HEART LAST MONTH SO WE ARE GOING THROUGH ALOT TO! WE DONT HAVE A TEAM THAT DEALS WITH EVERYTHING AT ONCE SO WE HAVE TO DRIVE TO MANY DR. APPTS. I HOPE EVRY THING WIL GO GOOD FOR YOU JUST WORK HARD AT IT, MY DAUGHTER IS 2 AND CAN SPELL! SO HARD WORK PAYS OFF! MENTAL DELAYS ARE ONLY A HURDLE WORK THROUGH THEM IN EVERY WAY YOU KNOW HOW! GOD BLESS FEEL FREE TO EMAIL ME ldarnell92@hotmail.com