Monday, March 4, 2013

Cerebral Palsy Awareness: Activities of Daily Living

We recently saw a new doctor for Tyler. It was a rehab doctor. It has taken us so much time to get into one down here. In the mean time we are heading to Utah for phenol injections the end of March. While in the appointment the physiatrist, she was concerned about his lack of Activity of Daily living ( or ADL’s) and the amount of stuff that I am doing for him. It was a very hard visit for me.

Cerebral Palsy limits what Tyler can do for himself.  THEN, Tyler’s mom limits the stuff he WILL do for himself. He has a manipulative side that he uses. And I am a sucker and plays into it. Sometimes it is a matter of time instead of manipulation, but still the same concept.

So, what does the CP limit? 

For Ty he can’t rotate his arms or reach up and touch his shoulders by bending at the elbow. That makes it almost impossible to take off his shirt alone. If we do one arm out he can do the rest, but it takes him a LONG time. So the majority of his dressing is done by me.

Pants. Holy MESS! He can get them down but it is really difficult because of his arm movement. So pulling UP is even more of a disaster. It also makes going to the bathroom a joke. I am the one that does the dressing of the pants because he can’t bend down to even get them on.

Shoes are a no go. He can’t bend to get them on. I do that part. He can’t do socks. Same problem.

Brushing his teeth is somewhat OK. But he needs extra help to get to the other part of his mouth. So one side gets done really well and I do the other side. He also can’t spit! Who knew!

Going to the bathroom. This is where we are totally at a loss. He is finally getting to where he will tell us he had an accident but it is always right after the fact. No one is sure if his muscles don’t work in that region or not. He is not dry in the morning times and he really doesn’t care, until recently, that he is dirty or wet. But adding the difficulty of moving quickly, feeling he has to go, getting his pants up and down on his own, it creates a disaster!

Getting in and out of the shower or tub. He does most of that on his own. It is very awkward looking and kind of scary to watch but he does great. He however, can’t wash himself in the shower. That is also my job.

Getting in the car is something he can do. He however, cannot do up his seat belt. I do that for him. He can’t get OUT of the car easily so I do that for him. Also, after going grocery shopping or something that he has had to work really hard doing, he needs help. So I have to carry and/or put him in the car myself.
Going into school on his own. He cannot do that. I can’t drive up to the curb and drop him off, however, that isn’t JUST from his Cerebral palsy. The cerebral palsy just makes it so that he needs us to help him get across the street so he is safe. His blindness makes it so he doesnt’ see the cars or the curb.

Tyler can’t work the remote on the TV. He relies on us to do that. Not just a vision thing either. His fine motor skills are terrible. He can’t even right his name.

He can’t make any breakfast on his own. He can’t use a spoon or a fork for a long time so he tends to use his fingers for everything.

His cerebral palsy also inhibits his sensory system and he doesn’t and CAN’T drink water. He gags. So he has to have other accommodations.

Going to the grocery store. He can’t walk the whole time. He has to sit in a cart. I get to only do half the grocery shopping because there isn’t any place for the food with a 7 year old in the cart. And I get to lift him in and out of the cart. If we have a baby in the cart with us, we have a good time.

Tyler also can’t process things in certain situations. His Cerebral Palsy and sensory system sure took a beating. But he has meltdowns. To the outsider, it looks like a temper tantrum. But for kids with sensory issues and problems, they don’t care who is watching. They don’t stop when they get the attention they want. He meltsdown for the literal fact that he can’t process what is going on.
( This was a sensory overload for Tyler. He was all done within a few minutes)

That might help people understand what I do for Tyler. But what he does for me....

He is always so thankful for me to help him. When I pick his shirt up or get it on him, he says “Oh Thank you mommy.”

When I change his diaper, he always tells me he is sorry he had an accident and that poopies have germs. And when we get done he says “ oh mom you are the best!”

Please and thank you are always there.

When I read him a story he is so excited and tells me that I am the best story teller in the whole world and maybe even the mystery planet.

He tells me that I am the best mom. He also says that his Dad gives the best kisses. He also thinks that we have some of the BEST ideas ever!

The smallest things make him so happy. And the best and easiest thing is to be his mom because he really does try so hard.


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