Everyone has their differences, but in a show of solidarity, students and staff at Oakwood Elementary wore green March 25.
They were celebrating Cerebral Palsy Awareness Day as well as one of their friends, Alex Williams, who has the motor disorder.
Alex, 4, has differences that are more obvious than some of his classmates. In the Oakwood gym on Wednesday as his friends ran and played with foam hockey sticks and balls, Alex moved around using a gait trainer, a piece of equipment with wheels into which he is strapped that allows him to use his legs to propel himself. When he reaches a wall, Sapphire Smith, 5, rushes over to turn him around so he can keep going.
‘I love Alex,? Sapphire says simply, and Antonio Porter, 5, agrees: ‘I love Alex because I like his smile.?
Indeed, Alex is popular with his classmates, says Lauren Schorr, who has been teaching in the Great Start Readiness Program for three years. Having Alex in the general education classroom has been great for everyone.
‘He’s the happiest kid you’ll ever meet,? she said. ‘We explain to the kids that everyone is different and they accept that. They aren’t judgmental at this age. This is a great opportunity for him and for them.?
Keri Williams was enjoying a healthy pregnancy with twins when her water broke around 5:30 p.m. on July 16, 2010. A little more than two hours later, at 7:36 p.m., Alex and Evan were born, 9 weeks premature.
Four weeks later, a routine head ultrasound performed for preemies revealed Alex had brain damage associated with cerebral palsy, a group of disorders that affect a person’s ability to move and maintain balance and posture. His twin Evan did not show signs of the disorder.
‘We were told Alex had periventricular leukomalacia, damage to the white matter of his brain and it would result in cerebral palsy,? said Keri, adding that the doctor took her and her husband Eric into a separate room to break the news. ‘At first I was devastated. This was my child and you never want them to go through hardships.?
Keri and Eric had heard of cerebral palsy, but had lots of questions. Cerebral palsy is a broad spectrum disorder and can vary greatly from one individual to the next in abilities. Doctors were unable to explain what Alex would or wouldn’t be able to do.
‘I remember we asked questions, and walked back into the NICU and I grabbed him and just held him forever,? said Keri. ‘I just said, ‘It’s going to be OK.??
Keri and Eric didn’t tell their family Alex’s diagnosis for several months while they educated themselves on cerebral palsy and prepared to answer questions.
‘We were overwhelmed with emotions as parents and it took me awhile to just be OK with talking about it and accepting it,? said Keri. ‘Now I am his biggest advocate.?
She has had to fight with the family’s insurance company to get Alex the therapy he needs, but early intervention was key. Alex participates in an intensive therapy program called Europeds in Pontiac that resulted him in being able to sit once placed in that position. He rolls around the room to get to his toys and is attempting to crawl, but is not quite there yet. He has high muscle tone in his arms, legs and even in his back, but is unable to control that tone. His trunk is weak, with low muscle tone. In therapy, they work on both fine and gross motor skills. Alex also has cognitive delays. He can’t speak (yet), but babbles, cries and laughs. His family and teachers have made books with pictures of food and toys to enable communication. He points to pictures to make different choices and show what he wants.
Alex loves to ride his adaptive bike, going to the park and going on the swings. Keri and Eric are getting him a special swing for at home, with a high back and full support. He loves music of all kinds and watching Mickey Mouse. His parents read to him every night and he selects the book from three or four choices. His favorite book is ‘Hand, Hand, Finger, Thumb.?
Keri says oftentimes people look at her son and don’t know he has cerebral palsy. Alex is a flirt with the girls and smiles at everyone.
‘He is an amazing little boy and has changed our lives in ways I never thought possible,? said Keri. ‘He has made me a better person. I feel like he’s made me understand the world of cerebral palsy, but he has also given me a whole new outlook on people with disabilities? a greater respect.?
She has been blown away by how Oakwood Elementary embraced the idea of celebrating Cerebral Palsy Awareness Day by wearing green and how the entire school community has befriended her son.
‘Every single one of us is different and things are a little harder for Alex, but I don’t even know if they know he has cerebral palsy,? Keri said. ‘All I know is that within the first week of school, kids approach him and if he drops a toy, they pick it up, they run up and make him laugh, they want to chase him in his walker.?
She has the same dreams for both her sons.
‘My hope for Alex is that he goes on to do great things just like Evan,? she said. ‘We are going to push him and never hold him back. We hope he goes to college and does whatever he loves and maybe gets married and has a family someday. We are just striving to help him reach his full potential. We don’t know what that is, but we will never give up trying to help him get there. My husband and I and Evan believe in him more than anyone.?