imgSuperkidJHMy name is Nick and I am the father of 18 year old Joel, born with Smith-Magenis Syndrome (SMS) caused by a deletion on the 17th chromosome. Joel is pretty unique with about 40 brothers and sisters diagnosed with the same syndrome in Australia. One thing they all share is a reversed circadian rhythm (sleep in the day, party at night), developmental delay, autism-like characteristics and a few peculiar SMS behaviours as well.

Joel’s main love “read obsession” is cars and we can often be seen casing them out. Joel will peer into every car in the car park while I stand back slightly apologetic. Have no fears this is not a Fagan/Oliver relationship, we are law abiding. His knowledge of cars and incidentally geography is outstanding. Joel will approach strangers in the street and within minutes the bonnet* is popped and a blokey conversation ensues.

Joel is a child of the dot.com generation. I am not. I go into a cold sweat when the telly needs to be retuned or the computer things need rethingamaggingging. Who is there to fix it? Joel. I deliberately do not ask myself how things get stuffed in the first place.

Joel’s place is in the community. Many people are out there to give him a life scouts, special nippers**, respite carers and friends.

Having a disabled child limits one’s choices in life, but having said that, he has added a dimension that few people would dream of. He can be infuriating, frustrating, funny and above all loving “that’s our Joel-ebear.”

* Joel informs me that in the US you refer to this as the hood. He’s usually right about things like that.

** Putting in a plug for special nippers here. In Australia we have surf life saving clubs all of which have a junior section known as nippers. The aim is to teaching ocean swimming skills, beach safety, life saving and general fitness. A few of the clubs (not enough) have established “special nippers.” It is wonderful as we parents sit on the beach while our children (and young adults) are entertained and kept safe in the surf by trained life-savers (who incidentally love doing it, all volunteers).

This programme is so good I try to spread the word. I don’t know if you have a similar thing in the US, but if not, it would be a great thing to get happening.

(excerpted from Spectrum, Vol 13, Issue 2, Spring 2009)