Chief25046 karma2019-08-28 14:50:52 UTC
Did any of the children with physical disabilities also have special needs such as being non-verbal? If so, how did you all handle he non-physical challenges?
I have an almost 4 year old son who uses a walker to get around and most likely will have a lifelong challenge with walking & standing up without assistance. I never really knew anyone with physical disabilities before. Now, I am so thankful when I see enough handicap parking spots or inclusive playgrounds that allow him all by himself to get up to the top of the slide so that he can go down.
I am so happy to hear that there are camps that focus on people with physical disabilities and inclusion. Someday I hope he gets to go to a camp like the one you attended. Thank you for spending your time at this camp and for helping to include these wonderful children in being able to experience a summer camp!
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Chief25043 karma2019-08-28 16:44:02 UTC
Thanks for the note! Just found out he has a genetic missence, the first exact known case in the genetic database. There are 14 other documented cases that have the same gene impacted just a different area of the gene. There is a chance that it is slowly progressive to where he may need a wheelchair in the future.
Luckily I am about to build a home which gives us the ability to eliminate some challenges now and down the road. We are doing a no step home entry so he can roll in with his walker or WC down the road, roll in shower, framing support to add grab bars in the shower and also making a place for a future elevator that would go from his room to the finished basement. Also we are fortunate enough to design the home so his room is on the same side as ours on the main floor.
He also has very limited speech since his motor planning is off a little and has low tone impacting his face and mouth muscles as well.
He is doing awesome though, progressing, developing, making more sounds, walking up to 100 feet without his walker, has a few words down and has the most amazing personality! Couldn’t imagine life without the little dude, love coming home and getting a hello hug from him!
Chief25042 karma2019-08-28 16:34:17 UTC
Awesome especially since we just moved to KC from Minneapolis earlier this year! KC has so much stuff for children with special needs! I will reach out!
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