Emily has been receiving Early Intervention (EI) services through New York State since she was two months old. She automatically qualified for these services because of her cleft.

Since Emily just turned three, her EI services (which included only speech and feeding) ended and we were told to have her evaluated by the school district to see if she qualifies for further services through the school board. I’m not sure why the school board is now responsible for these services when she won’t actually be in school for another two years, but who am I to question the educational process?

So last month we took Emily to be evaluated for Cognitive, Social/Emotional, Physical, Language/Communication and Adaptive development. She fell within the average range for all of the above (at least that’s what the report they mailed to us said) and when we visited the school board to go over the results, we were given very encouraging news.

The school board Chairperson who reviewed Emily’s results said (and this is a rough quote), “I had to take a second look at Emily’s results, they were so good. I was amazed, and it takes a lot to amaze me.”

What??? But the scores said “average” across all the above performance criteria. What we learned at the meeting was that it’s very difficult to evaluate a three-year-old’s performance IQ, but that Emily did exceptionally well with many of the tests and demonstrated the cognitive abilities of a child between 4 and 5 years old! I asked if her performance was compared only with children in the special education system and they told us no, her performance was judged against all her peers.

Cleft or no cleft, she’s keeping up just fine with the other kids.

The bad news (which is also good news) is that she doesn’t qualify for additional (free) services through the school district. In order for her to qualify, she’d need to demonstrate a delay of 30% or more in any of the above areas (e.g., cognitive, speech, physicial, etc.) She does have a slight delay of 8% (on average) for various speech-related processes – so not nearly enough to qualify. They are going to retest her again in six months.

I have to say, I credit NYU’s Nasolaveolar Molding (NAM) process, and Dr. Cutting’s surgical technique for Emily’s amazing outcome with speech. She has no palatal fistulas and a strong, continuous gumline thanks to the NAM and Dr. Cutting’s repair. I’m sure this is what has helped Emily develop her speech fairly normally. I also give a lot of credit to Emily’s local speech therapist, Robin, who taught us a lot about how to work with Emily and really helped us during the critical times (namely, after both surgeries). We’ll miss Robin’s regular visits to our home – Emily adored her.

The school board representatives all said they were amazed at her performance considering she was born with a cleft palate – they have a lot of experience dealing with kids who have clefts and Emily astounded them all. I told them all about NYU and the NAM and they want to use me as a resource for new parents within the school district – and of course I’m ready to help in any way I can.

I leave you with one very cute smile.