Thursday, April 16, 2015

A step forward

So, this happened today ...


Brett chose to go in the walking track at Easter Seals during physical therapy. It is one of his favorite things to do. The harness offers full support and is adjustable to fully support his upper body so he can focus on moving his legs. Here is what it typically looks like and how he started out yesterday:
video




 This is how he walked most of the way on his return walk down the hall. I was so excited I almost forgot to video and got him at the tail end when he was wearing out, but remarkable nonetheless.

video



 Look at those strong legs moving unassisted with such fluidity! We celebrated by swinging by Chick-fil-A on the way home and getting a few of Brett's favorites - French fries and lemonade.

Wednesday, March 25, 2015

Brett Can

Brett Can!


Today is Cerebral Palsy Awareness Day. There is so much about CP that I didn’t know until Brett was diagnosed and we are still learning. This year United Cerebral Palsy’s awareness campaign is #CerebralPalsyCan. They have posted videos of what people with CP can do. I’m using that as my jumping off point this year to share with all of you just some of the things Brett can do. So often someone with a disability is looked at for what they can’t do. We, like many parents, are doing what we can to help Brett live a life without limits.

So, here we go:

Brett can sit and stand
Brett does spend a lot of time in his wheelchair. But, with a little support on good days he can stand for a minute. On his best days he can sit unaided on the floor for almost 15 minutes.


Brett can walk

So, it may not look like walking does for the rest of us, but he is working hard at it. Brett walks with assistance from adults, in a gait trainer and his favorite is the walking track at Easter Seals. He is fully supported at his upper body, but to move those legs he does the work. Brett also can roll across a room like nobody I’ve ever seen to get where and what he is after. 

After several years of frustration that he doesn’t use his power chair to move forward as much as we would like, a few recent adaptations to his positioning and a few items being ordered to further adapt his chair have shown lots of progress in the last month.

These are all ways Brett can get where he wants to go.

Brett can talk

Brett expresses himself all day long. For those closest to him he doesn’t need a lot of words. He uses a thumbs up for "yes" and crosses his arms and sometimes shakes his head back and forth for "no". If he wants your help he will reach for your arm or hand and pull it toward him. But he also has some words. There is no better sound than when he says Mommy, Daddy or I love you, which he says with more frequency in the mornings. He calls “out” when he wants to get out of bed, can say “all done”, “again” and a favorite is when he really wants you to know something and gives a big “Yaaaa!” He also is having a lot more success using his DynaVox to express himself - it’s a computer he uses to say the things he isn’t able to say with his mouth.


Brett can be adventurous

Brett is a dare devil. Like any parent is scares me to let him try things that are risky. But if we would let the other boys try it and the risk isn’t any greater for Brett we usually take a deep breath and let him go for it.
Last year he enjoyed tubing on the lake at high speed (I wish it was a video so you could hear the giggles). He loves flying down the hill on a sled and any opportunity to climb or interact with animals (he even loves snakes).

Brett can participate in all school activities

Brett is still splitting his time between a multi-needs class and integrating into a “regular” first grade classroom. But he is exceeding the academic goals set for him this year. Brett can read for enjoyment and comprehension, add and subtract and can tell time, among many other things. He is participating in Tiger Scouts as well.

Brett can ride a bike

Due to the generous donation from a family whose daughter has CP and outgrew her bike Brett was able to begin riding a bike last year. He is just beginning to propel it forward on his own by pushing down the pedals and there is a handle on the back that allows an assistant to push and steer as well. Brett loves to be on his bike, especially when his brothers are out on their various bikes, scooters and big wheels. I wish you could all be here to experience his joy every time he gets on a bike - it really reminds you of the good things in life. (yes, it's pink. But we will be painting it this summer!)


Brett can participate in sports


Brett loves to play football, baseball, tennis - you name it. If it's sports related he wants in. Often that means holding the bat or the glove or the racket with him. Brett has participated in sports with his brothers since he was little. Our park district's special recreation affiliate is always ready to help and will provide an aid for Brett to participate in any program they offer. But we have found Brett really enjoys adaptive sports and plays both Chicago Top Soccer and Buddy Baseball. It is a treat for us as parents because amazing volunteers assist Brett and we get to sit in the stands and cheer him and his teammates on.

Brett can help others

Brett loves to step up. At home he never complains when asked to do chores like dust, sweep and vacuum, which he is able to do with some adaptations. Brett also participates in mission work. Our family recently volunteered to pack food boxes for the Children’s Hunger Fund. Brett packed boxes last year and this year helped fill bags with pasta and label them for families in need right in our neck of the woods. He rocked the hair net and understood the importance of what he was doing.


Every diagnosis is different and even with Cerebral Palsy there are so many different kinds and degrees. When encountering anyone with a disability please always assume they want to be included - if you aren’t sure how to make that happen ask them or the parent, caregiver or teacher how you can get the person involved. It means the world to those living with cerebral palsy and their loved ones because they CAN do more than you might think!