I had a great morning today at school, but the highlight of my day today was definately going to the Snoezelen Room with my friend (& more formally, support worker) Michelle.
Michelle is my support worker at preschool, helping me do what the other kids are doing, and more importantly, helping me and the other kids play together. She is very enthusiastic and fun, and she really "gets" me... she can tell what I want and need, even though it's hard for me to get that across to most people. We get along so well that my parents asked her if she could play with me at my house once a week after school... I show her how well I walk in my pony walker, and we play in my stander... she cheers me on and I almost forget I'm working so hard! She also helps me eat my lunch and lets me hold the spoon all my myself! We have so much fun!
Today, instead of coming to my house after school, we went to a Snoezelen Room which was very cool. It is a very relaxing room with a lot of different soft lights and things to look at... if you Google "Snoezelen Room" you can find out all about it. I was so intrigued by everything there and kept signing "more" to Michelle for the first 15 minutes or so, because I was having such a great time! Next time we go Mom wants to come too... it will be fun showing her all the neat things! I had such a busy morning that I fell asleep on the way home, which is actually quite crazy because I have only ever fallen asleep in the car once before in my whole life! I was very tired... or maybe the Snoezelen Room did the trick and relaxed me that much... or maybe a combination of the two! Either way, I am glad I had a restful rest of the day today because I am gearing up for an exciting Easter weekend, visiting my grandparents, aunts, uncles and cousins... I can't wait!!!
About Me
- Isaac
- I am 5 years old and I live with my Mom & Dad (Amanda & Kevin), who love me very much. When I was still in my mom's tummy, the doctors saw on an ultrasound that the ventricles in my brain were bigger than they were supposed to be and that I have a condition called hydrocephalus. Given the fact that my thumbs were clasped when I was born, and that this showed up once before in my mom's family, they thought it might be genetic. Sure enough, the test they did said I do have genetic hydrocephalus, AKA: x-linked hydrocephalus, L1 syndrome, L1CAM, CRASH syndrome, and maybe other names I haven't heard yet. This affects how the nerves in my brain and my body talk to each other, and that's why I have to work really hard at physical stuff like sitting on my own, and mental stuff like communicating. It doesn't stop me from smiling, being truly joyful & loving life, nor does it stop me from loving my parents and those close to me so much, and in turn, stealing their hearts completely.
1 comment:
Hey Issac,
Thanks so much for keeping us updated in your adventures. Your mom and dad must be very proud of your accomplishments.
Look forward to hearing what you get up to next!
Happy Easter from here in Australia
Greg and Natalie Dearden
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