DeafBlind and having fun?

posted in: Kodiak My Little Grizzly | 5

Well, I finally got my lap top back… another blog maybe some day… nah!

Anyway, Kodi has been sleeping better again and not falling out of bed. He is back on the correct Melatonin dose.  I think I will just order what we need on-line in the near future here because I don’t want to risk being out of the correct brand.

He had a good time yesterday.  His intervenors are taking him places in the community to do and learn things.  The good thing about this is he is doing things with others and gaining trust.  Also, some of the things that really are still in his age group his older sister and brother no longer still really enjoy.  For example this little place called Giggle Factory where he climbs and has a route to take and can do almost completely by himself now. I know they would not want to go to. But yesterday the intervenors  took him to a new place. (I forget the name)

Lookout Ridge?
Lookout Ridge?

Well Kodi has been there but really was too small to really enjoy.  He didn’t like it so well then.  Now though yesterday he really had fun.  He loved the slide and kept going to it over and over.  So what is it like going down slide with no vision and no hearing. He can not tell us… But read on… I think I can put it into words. This photo is blurry because he was moving… 🙂 And you can’t deny that smile… I know he was giggling.

So what is it like?  Try it… but I will try to put it into words: When we went down a water slide last fall in the dark but I shut my eyes anyway… I also plugged my ears.  The sensation is very intense and you can feel the turns coming on.  You can feel the wind change in the tunnels. You can tell when you are nearing the end by the temperature change and the air changes.  But unless you are my mom… 🙂 (sorry dear I know it’s the climb that’s the killer mostly) The ride with out sound and without being able to see is really quite fun.  It’s as thrilling, if not in some ways even a little more thrilling.  I was a little surprised at first when I realized this.  But he loves these things because maybe he has a better time then the rest of us do.  He sure giggles. And that is when we got him to sign independently without prompting again. We just got out of the water after coming down a water slide and he signed a perfect “more” over and over.  My little boy forgot maybe that he was now completely blind and in that moment of excitement he signed like always and leaned that we could still see him without touching his hands. I know I’m repeating my self here but I’m also learning more about that moment when I see and hear how happy he is on slides.  🙂

His day yesterday makes me happy. Makes me realize he has these excited moments with other people and he gets to do things that are not in the confinement of home or the classroom but in everyday things outside of his safe zones.

I’m beginning to put together places like water-parks on a list of things we can save up for to take him to as a family. One thing we would like to try with him is the Alpine slide down a mountain.  It has a brake and he could ride with me.  The other thing would be a dogsled ride.  I’m thinking we might try a tube slide down a huge hill.   These kinds of things are enjoyable for everyone.  But also it’s so much fun for us to see out little DeafBlind CHARGER with scoliosis have so much fun! We love to see him so excited to LIVE and his full belly all out LAUGH and then how much LOVE for these excursions and us he shows.  It makes the tough times more endurable and during those tough times it gives us good memories and helps us think of things to do when we get through those tough moments.

He went to sleep rather quickly tonight without me next to him.  He just buried his sweet little face into the couch.

FAST ASLEEP! On his own on the couch!
FAST ASLEEP! On his own on the couch!

He cried as he was leaving school today.  But then we had weather move in.  He was happy at home when I got home.  We went for a ride running errands and grabbing his favorite supper… and he was mostly happy except a couple of times hitting his eyes.  But we have sleet/snow that was moving in this afternoon and tonight.  So that is most likely why.

I don’t have anything funny tonight. I don’t have anything amazing to share but I wanted to share a good happy thing because sometimes it is the only thing that day that makes it ok… 🙂

Good night my Sweet Symone, Curious Colt and grizzly Kodiak.  You all are  the most precious things in my life. True gifts from God. And gifts I hold very dear to my heart.  Sleep well my little ones… sleep well.  Your mom loves you very much.

 

5 Responses

  1. Slides and rides provide amazing sensory experiences that are tremendous fun! I *love* roller coasters and it’s a small comfort to know that there will always be thrilling experiences like that even if I become totally blind (I am Deaf with Usher Syndrome). So glad that your boy loves them too. He’s lucky to have a mom like you!

    • Tashi
      Thank you so much for sharing how you feel. Your personal experience means so much more then I can possibly explain. So my question for you… Are you becoming an expert with Braille now so that you can stay connected with communicating to others… IE: text, email etc? I hope you never have to go blind… I hope you have at least enough to see but if not how do you feel about Braille?

  2. I can still see a lot, though I have stopped driving. My central vision is pretty good and I can read regular print in good light, also see signing well as long as I’m not too close or too far. I have learned the braille ABC, but visually. Since deterioration of my vision is very slow, there’s a good chance I’ll never go fully blind (knock wood!). Depending on how long I live, heh. However, I’m all for braille and would like to learn to read it by touch just to have that skill in my pocket should the need ever arise. Braille is so important for Deafblind and it worries me as hearing blind seem to be using it less and less in favour of auditory tools, so there are fewer braille resources. Braille is secondary only to tactile sign language for Deafblind for connecting with others. How is Kodiak doing with his language? You’ve mentioned he signs ”more”, for example. I just found your blog, maybe I need to read back to catch up 🙂

    • Yes it is my hope by my blog to help others learn… Seems like so many know Hellen Keller but really not someone now with technology etc. So I feel with all the questions I get the easiest thing for me is to blog with updates and also add tho he like what you have contributed… You have a voice from the others side that Kodi doesn’t have yet! Please feel free to share here. 🙂 Dr Van Dijk also is amazing and showed me a ton when he watched Kodi for 2 hours with me to figure out how to help him. Keep learning Braille… Now there are iPads if you are in the US that work with a device to help you stay in touch with those around you… 🙂

  3. What a wonderful post – and I loved the pictures! Such a wonderful smile! And thank you for the description. It was really vivid. And this whole post was just so touching. It made me want to go hug my little ones 🙂