Monday, September 3, 2012

What Having a Child with Cerebral Palsy Means to Us

Today is the first ever World Cerebral Palsy Day!

Matthew was formally diagnosed with Cerebral Palsy back in June. Part of me always suspected it, so I broached the subject with our neurologist and he agreed that he fit all the criteria and we added the diagnosis to the permanent record at that time.

So...what does having a child with Cerebral Palsy mean? Cerebral Palsy can vary from person to person, with the possibility of any number of symptoms. In Matt's case, he has stiffening of the arms and legs and he is immobile in that he cannot sit, stand or walk. We are still in the learning stages of Cerebral Palsy, but rather than talk about what limits Matt, I'd rather show you what having a child with Cerebral Palsy means to our family.

We work hard with our therapists

When we find a problem, we find a way to adapt it to our needs

We enjoy the little things

We find ways to make our work fun

 We work even when we'd prefer not to 

We meet new challenges head-on

And most important, we love  and support each other no matter what!

What does Cerebral Palsy mean to your family?

Matthew's New Wheels

The day I have alternately been looking forward to and dreading finally came--Matthew finally got his wheelchair.
I say looking forward to because the kiddo isn't a tiny little man anymore and my back is killing me. Thanks to the Ketogenic Diet he is on to control his seizures, he is weighing in at almost 30 pounds and he is outgrowing his stroller and high chair by leaps and bounds. At the same time I have been dreading this day for so long. The wheelchair is a big, bright red reminder that Matthew isn't able to walk, or run, or chase around his big cousins like he wants to. For us, it means we have to accept that  yet another dream we have for Matthew will be different than what we thought it would be.
He wants to get up and move around so badly. He rolls all over our living room, he tries to sit up and has even stood up on his own when sitting on a bench in therapy sessions. His last physical therapy evaluation showed great promise and twice weekly sessions have been recommended for him. Right now we're just waiting on an opening with a therapist at our rehab center or his school, all of them are fully booked with the new school year starting.
I am choosing to look at this as a positive thing, even though there are moments in this that hurt like hell. This chair will give Matthew so much more independence and freedom than his stroller ever did. Already his posture has improved, he is using the wheelchair tray to weight bear through his arms and hands, he is able to see his iPad better which will help when we start using our new AAC program, and he is loving that he is able to look around and see things that he hasn't been able to see before. I can't wait to see how he adjusts to the wheelchair and accepts it as part of his new normal.