Tuesday, September 4, 2012

Raising awareness - World Cerebral Palsy Day

Brett doing two of his favorite things swimming and listening to music!

Today (Sept. 4) is World Cerebral Palsy Day. It is a day to raise awareness and, hopefully, make a difference in some way – big or small - for the 17 million people worldwide with CP. The theme is Change My World in 1 Minute.

There were no banners hanging today, no signs in people’s yards, no flashing ads on the side of my online news page. So for my part I thought I’d blog about it. It will take you more than a minute to read, but I’m using the opportunity to educate, to answer questions others may be uncomfortable asking. I'd like everyone get to know and understand Brett a little bit better.

1.     What is Cerebral Palsy? It is a form of damage to the brain. It is kind of a blanket diagnosis and there are many types. For some it is severe. For others, somewhat minor. It typically impacts muscle tone, movement and motor skills. Brett has spastic quadriplegic cerebral palsy, meaning it causes his body to occasionally move in a spastic or uncontrolled way and it affects all four quadrants of his body – both arms and both legs.  Brett is typically considered to be in the severe category. He cannot walk – yet, he can only sit independently for several minutes on a good day – so far, he is nonverbal – though he is able to communicate in so many ways. So, I disagree. I have met others with CP who can barely sit up when strapped in a chair and can do little more than smile, that are on breathing and feeding equipment around the clock. I guess it depends on your vantage point.
2.     How did he get it? First of all, Cerebral Palsy is not a disease or illness. It is not contagious. It is a disorder. For most the damage happens before or during birth, but it can be caused by accidents that cause damage to the brain. In Brett’s case we don’t know. There was no trauma during Brett's delivery, though he was born six weeks premature, but so were his brothers. The best guess is that he was deprived of oxygen or nutrients in my crowded womb (Brett is one of triplets). To us it doesn’t matter how or why. He is as God intended and beautiful and perfect just like our other boys.
3.     Is there a cure? Not yet. But, therapy, treatment and special equipment can help improve things. CP is not progressive. The degree of damage does not get worse over time and in some cases can improve. The brain is an amazing organ! Through repetitive motion and retraining the brain Brett is now able to roll, move his legs independent from one another, open his hands to grasp objects and open drawers, touch a picture or object to answer questions, use switches (buttons) to communicate, activate toys and play games on the computer.

Some things I'd like you to know about Brett:

1.     Brett does not have cognitive impairment. He is a very smart boy and there are no signs of cognitive impairment to date. He knows his colors, animals, ABCs, numbers – pretty much anything his brothers know. I suspect he knows more than them and likely has a better grasp of vocabulary (one of the up sides of sitting with the adults so often while other kids run around).
2.     Not being able to talk is not the same as not having something to say! One of the greatest frustrations for Brett and those closest to him is when we don’t know what he is trying so desperately to tell us – through sounds and motions. Brett’s hearing is fine (actually quite acute) and he comprehends what you are saying at the same level as any other 4 year old. Brett is nonverbal, but he does say words and recently is stringing words together. Sometimes I’m the only one who can tell what he has said. Other times it’s clear as a bell. He says momma, daddy, cup, out and all done pretty clearly when he wants/needs to. He has said I love you! He has said his brothers’ names, aunts, grandparents, called for a toy - sometimes out of the blue and clear as day and sometimes you never hear the word again. Brett gives a thumbs up when he likes something or wants to answer 'yes'. Sometimes it takes a few minutes for his brain to tell his thumb to move and sometimes it is immediate (like when you ask if he wants a Cheeto puff or chocolate!) Brett communicates with his motions, body language, tone of his sounds and eye contact. He also has picture cards that he can use to touch to tell you something. He uses switches that look like buttons that he can touch to communicate a pre-recorded message. He also uses a Springboard Lite – a communication device (yes, like Stephen Hawking, but not yet quite that sophisticated.) He uses two switches to access the device. One he hits with his elbow to scroll through his choices and one he pushes with his hand to make the device speak on his behalf. He has been using it for a year and is getting pretty good at it. I had to add a button that said “I’m frustrated, what I want to say isn’t on here.” Because there are so many new things he wants to say and his programmer (aka his mom) can’t keep up! We have recently added phrases like “I’m just kidding” and “excuse me, please stop talking for a minute.” Each night during prayers I am reminded that God hears his every word – spoken or unspoken – and it gives me such a sense of peace.
3.     Brett has a tremendous sense of humor. Through his speech therapist he has recently been hearing knock knock jokes. He thinks they are so funny (he shares my corny sense of humor). He will sometimes “say” or do the opposite of what you ask and it sometimes takes a minute to realize he is kidding.
4.     Brett does not need pity. As a parent this has been one of my greatest frustrations. I have to stop the immediate anger that rises up in me when he/we get those looks or comments and remind myself it is that person’s attempt at compassion. Are we sad for him? Not really. I have grieved or known moments of grief like when Jackson and Peyton were taking their first steps and Brett could barely lift his head up, or when he isn’t able to jump in and do exactly what the other kids are doing. But it usually passes quickly and I try not to dwell on it. I try to think of ways to make things better or adapt his equipment to help him participate more fully. I sometimes forget Brett is in a wheelchair or that this isn’t everybody’s “normal” because it has always been for us. Brett is happy, healthy, smart and funny. He loves school, music, participates in sports programs, loves Jesus and is building a foundation of faith I trust beyond anything we will ever experience and is so loved by so many people. Does Brett have challenges? Absolutely. He has to work so much harder for the smallest movements we take for granted. But those victories are celebrated and it reminds you of what is important. I keep in mind Psalm 139:13 For you formed my inward parts; you knitted me together in my mother's womb. I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well.
5.     Brett is very social. One of his favorite things to say on his communication device is simply Hi! He will say it to strangers as we pass and shout it over and over until someone pays him attention. He understands what you say, even if he cannot verbally respond. He can respond to requests like 'Brett, can you pick up your spoon,' though it sometimes takes a minute - or two. He loves hugs and when you take his hand and help give him a high five. He is never so happy as when he is playing with his brothers or when he is being loved on by friends and family!
6.     What does Brett's future hold? I am often asked if he will walk or talk. We don’t know. Every day we act 'as if' - as if anything is possible. Faith and hope can move a mountain, so… We have had doctors say he would never… (fill in the blank) and I can fill a whole blog with things they said he wouldn’t do and he has done. I have met adults with CP who have jobs, are married with children and have earned advanced degrees. Our dreams for Brett don’t have limits. Like with all our boys we will do everything in our power to help Brett live into God’s purpose for his life – no matter what that looks like.