Mito Awareness-Day 3

Another big energy user is the brain. You brain needs a lot of energy to function. Lots of mito kids have seizures because their brain isn't getting enough energy. This is not the case for Asa. We are constatly told that he is at greater risk for seizures and he's had a few EEG studies but he doesn't have seizures right now, and may never.

He does however have other signs that his brain is affected. He has many "autistic features". He startles easily and has an overreaction to loud or sudden noises. He doesn't like certain textures, like soft or cuddlely. He seeks out rough or hard surfaces, like sandpaper or concrete. He has a hard time playing with someone and mostly plays alone or he interacts with others to get what he needs. He likes to watch things spin or open and close. Instead of playing with toy cars, he likes to just spin the wheels. He does however like to be held and hug and interact with us. A lot of kids with autism can't do that so we are grateful for every smile, laugh and hug we get.

Asa also doesn't talk. At all. He vocalizes and grunts. He squeals, laughs and screams. There is sound but it isn't our language. He does tend to use the same sounds over and over but they mean something different each time he uses it. The doctors told us last week that the lack of speech was because his brain was affected. He does understand a ton of what we say so when he gets a way to communitcate I'm scared of what he might tell!

Asa also just has general cognitive delay. He can't identify colors or letters or numbers, even by pointing that wouldn't involve speech. He does know who each family memeber is so he can retain info so i'm hopeful he can learn these other skills just at a slower pace.

Asa is also being treated for anxiety. This helped with many of his sensory issues. I hate him being on medication but there's no doubt it has contributed to many of his big changes! Before the meds, he couldn't go to new places or meet new people. He was so afraid of everything around him that he wouldn't even try to use a walker, much less walk on his own.

Asa's brain also has a hard time regulating some of the "natural" things that our bodies do all day. He is heat intolerant. He gets too hot very fast and then doesn't cool down as fast as we do. This really takes a toll on his body when it happens.

Make no mistake though, you may see "delay" or "struggle" or "can't do" a lot in these post but Asa is a blessing and a joy! Watching him discover something for the first time is amazing. And we get to see him do this daily in one way or another!

Tomorrow, we'll tackle GI issues!