I’m 7, am Autistic and have Hypohidrotic Ectodermal Dysplasia

I’m always itchy. Cause I’m allergic to stuff. I can’t eat eggs, soy, oranges, strawberry, tomato sauce, sesame and lots more.

I get too itchy when I get hot. I do like getting hot when I am cold and I like getting cold when I’m hot. I just stand in the shade when I want to get cold.

At school I do maths, Journal, COGS, and computers. Library and singing. My favorite is spelling we have to spell words and I used to be the first one but now a girl with blonde hair is coming first. I was first spot and she’s taken my record 😦

I LOVE my teeth, cause they’re AWSOME! Because they are sharper than anyone. I showed my teeth  once so I could get to the toilets because there were lots of boys in there. They got a bit frightened and I got in 🙂 I wouldn’t bite them, all I did was use them to clear the runway.

I catch a taxi to school because I don’t like the bus. I got a nosebleed on the bus and got scared.

Once there was no power at school and I got hot and a Teacher saw me in front of the classroom door and he told  my Teacher that I had to go to the library because there was an air conditioner still going in there and he called my mum to pick me up.

I don’t hate anything about my body, I just don’t like when my brother hits me. (they have spats like “normal” kids)

I like my teeth the most. I love mummy and daddy and my brothers and sister.

Because he is autistic there are many things he does not understand about HED as yet. When he said he goes in the shade to get cool, he doesn’t realise it is the teacher’s aide who then helps him to cool down by spraying him with water. The skin is a major irritant and he has often used it as the only way of expressing his frustrations with the world. At the moment it is under control with steroids. We are looking into other avenues.

Asthma is a side effect of eczema in him and we have had many a trip to hospital for the nebulizer. We have found out that his skin will flare up when he walks past a freshly mown lawn.  The Teacher was observant enough to note it down and she has successfully negotiated a timetable around his class times so there is at least one night between the mowing and when he next comes to class.

I have the utmost respect and admiration for the school my sons go to, the teachers are so involved in teaching the kids about respect and acceptance that none of my sons have had any major issues there. The children which do arrive at the school as new students are encouraged to ask questions and learn about the boys to forestall bullying and it is working very well.

This is my number 2 son for you.

With Love and Support,

Tarja Kelly


3 Responses to “I’m 7, am Autistic and have Hypohidrotic Ectodermal Dysplasia”

  1. 1 Jerilyne Priddy Chang 19/06/2010 at 1:25 pm

    I just spent a wonderful day at a conference on Sensory Processing Issues…speakers were Temple Grandin and two others. Amazing and wonderful suggestions and ideas for coping as well as helping children learn the skills they need.

    Isn’t is awesome that your son loves himself!!! That’s a true testament to you providing a loving family. As parents, we worry and focus on what they can’t do or on what the issues are…but they are just kids inside. It is not HED that defines them.

    It’s wonderful that you are sharing!! Bless you!

    • 2 tarjakelly 19/06/2010 at 1:37 pm

      Thank you Jerilyne.
      Your experience sounds wonderful, I too have attended many workshops on various child related things.
      Our attitude here at home is, give it a go and we will work out a solution if one arises. So far it has been great for the boys as they will rather give it a go first than call it quits before they try.
      Sharing is the way to cope when things are hard, thank you for reading and learning with us.

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