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April 2003

Submucous Cleft
New York
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I'm an odd case where the cleft was very mild and surgery wasn't needed for it since it wasn't an open type of cleft. I just want to show others that there are some cleft-affected people who do not need surgery for their clefts. Sure they'll have some cleft-related issues, but they're often mild.

The worst physical issues in my case are the dental issues. My speech issues aren't very significant.  I'm aware that I'm a little nasal, but despite that my speech sounds surprisingly good. The other thing that I want to point out is that I have Asperger's Syndrome and that made things very hard for me as a child since my development was delayed in a number of areas.

The important thing that can be learned from someone like myself who had both a very mild cleft and a developmental challenge is that you should try to do the best you can and not to feel like you're inferior because you have both a cleft and a developmental challenge. It might be tough sledding, but if you can manage to maintain a positive attitude about yourself, you may easily persevere over your adversities.

The cleft affected my hard palate, alveolar ridge (bilaterally cleft) and the right side of my upper lip (microform cleft). The microform cleft lip in my case is barely visible and much of the time, I can hide it. The mustache helps a little. The cleft isn't anything dramatic since the cleft in both the hard palate and the alveolar ridge is covered over by the skin.

I do have cleft-related dental issues since at one point when my permanent teeth were coming in, the
tiny clefts in the alveolar ridge fused and I wound up retaining both my upper baby canine teeth. This interfered with the development of some of my permanent teeth so as a result a few of my permanent teeth are missing. Two of my permanent teeth (canines) are also in the wrong position. My pre-maxilla is slightly dropped (1/16") so my front teeth appear to be a bit low. This isn't very serious though it looks a little funny.

Having even a mild cleft does have its challenges. Since my soft palate is too low, my speech is a little nasal and I tend to make a weak snoring noise occasionally when I breathe through my mouth hard. Sometimes people will pick up on my mildly nasal speech so I'll need to explain things to them. Then they usually understand that I have a very mild cleft. That is one of the challenges that I have living with my very mild cleft. Otherwise, I don't have any other speech issues that is readily apparent. Sometimes I'll have some pain from the cleft and it can get a little bothersome. However, I manage to cope with that as a rule.

I'm also unusual for a cleft person since I have Asperger's Syndrome. Technically it is considered to be autism, but it isn't like the stereotypical severe autism where the affected subject is either non-verbal or minimally verbal. Like full blown autism, Asperger's Syndrome is a developmental disorder. Unlike autism, those with Asperger's Syndrome are verbal, but they tend to have some traits similar to autism. Social skills are not a strong point with me.
Like many of those with autism, I can be obessive but not severely so. I have the tendency at times not to have eye contact with the person I'm speaking with. My development was delayed in a number of areas. In a few instances certain things never developed completely. My mental ability is not impaired however. If anyone is familiar in dealing with those with Asperger's Syndrome, they will often find that such subjects are often quite intelligent. Sometimes they are incredibly brilliant, but they sometimes fail miserably when it comes to their social skills and some other skills in addition.

Getting back to myself, I've been described as eccentric, inquisitive, having boyish tendencies. Last year I was at a meeting with a group of people in someone's huge house in Darien, CT who were members of the Music Box Society International  and
the host owns an 89 key G4 scale Gavioli fairground organ. I became known by one person as "The one who was bouncing around "  since I still tend to be a bit hyper. Other people have said that I'm quite a character. One woman who is a child psychiatrist said that I'm somewhat odd with both my very mild cleft and the Asperger's Syndrome. She finds me interesting because I'm not the kind of person that you come across very often.

With my mildly funny sounding speech and quirky personality and intelligence, I can be an interesting kind of person to those that are willing to get used to me. Now if there was only a way that general society could be more accepting of those with Asperger's Syndrome. One thing for sure, you can't catch it.
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