So I get asked this question a lot! Now by a lot I mean there are 3 things that are most asked when I mention my son is DeafBlind!
1.) How do you communicate?
2.) How does he eat? And
3.) How do you do it?
Well, the communication part is slow in coming as you probably have already guessed because otherwise this would be written in first person by the one and only DeafBlind kid named Kodiak using Braille and using adaptive equipment on his iPad or iPhone that translates this to print! Instead it’s good ol mom!
And well I’ve kind of touched on the how we do it part!
Now for the 2nd most popular question! How does he eat?
Something about Kodi I have not mentioned is he has facial Palsy on the left side of his face as well as torticollis. He had a weak/paralyzed vocal cord that caused him to aspirate. Also the sound that came out was barely a whisper at first and slowly got stronger. Anyway he also would not chew. He could not form his mouth to suck on a bottle especially with honey thickened liquids… We had to help by squeezing it into his mouth… Which he had until almost age 5 years old. Now that he packs his mouth full of food he “harbors” it in his high palate and saves much for later! Yuck!!! However, he loves food! You would not know this as the kid is very scrawny and most likely will NEVER have a weight problem… As in overweight that is…
Breakfast: usually still different flavored oatmeal with milk and carnation instant breakfast… Some times moms homemade eggs, bacon cheese etc…
Lunch: at school – Mac n cheese – his favorite food of all!!!
at home different leftovers heated up or his chocolate chip waffle sandwich with peanut butter and honey, etc
Supper: usually what ever we make for supper etc one of his favorites is pizza from Papa Murphy’s!!!!
So Monday night we did Pizza… He refused to keep clothes on so we gave up. We let him sit there in his pull-up however put a blanket on the chair. I sit next to him and have his pre cut (2 slices without crust) of pizza in a bowl and have a fork. I stab a bite sized piece and hand him the fork. He chomps it and then goes for more and signs “more” and when I go to stab another piece I see he swallowed that bite already. “Did he even chew it?” I ask to no one in particular but pure amazement? He gets tired of waiting for another bite and just jams the fork in and with 1/2 that’s in His bowl he tries to shove the whole thing in his mouth. Now we stop him!!! He giggles! He’s Pizza monster! His mouth is packed completely full and he is signing “more” but I sign “wait chew” and turned to look at Symone and laugh and looked back and see he has red lines across his chest. “What is that?” I ask the kids. Then I catch him in the act… He decided it was funny to scratch his arm (beginning at the wrist) and across his chest… I caught him in the act! I think because I told him to wait and he needed to chew first. He signs “more drink” and I hand him his cup and because his mouth is packed full I try to stop him because I realize none will go in… “Too late” Colt states! Yep now he has cold liquid running down his face and chest… Well we don’t have to worry about clothes getting dirty I guess! He giggles! When he eats like this it reminds me of a snake eating a rather large rodent!!! We try to control his way of eating but then when we relax for one second he slams his head on the table! At least he sits at the table now!!! I got to tell you… The only way I get through it is look at the positives and work on the most important things and not sweat the smaller things.
The bigger question should be “how do YOU eat?” It’s me the mom that eats even weirder these days… Sitting next to him… 🙂