Where Do You Live?
We’re in Lake Park.
Tell Us About Your Family…
Ron and I have been married since 1989, so almost 27 years. We have a daughter, Meagan, who is 24 and married to a wonderful man, JC. They are expecting their first child in August. We are fortunate enough to have them living close by. Then we have Matthew who just turned 19 and is a senior at Porter Ridge High School. We tend to try to get together with all three kids at least once a week, when we are in town. I know they aren’t kids but they always will be!
How Has CP Affected Your Family?
Matthew wasn’t diagnosed until he was almost two. We knew something was wrong soon after he was born. We took him to the pediatrician many times, but it was brushed off as me being a neurotic mom. The frustrating thing about this was I had a normal child, had taught for many years, and had a degree in Early Childhood Education which taught me all about the development of children.
As we continued to try to get answers, Meagan was in her kindergarten year. I knew academically and maturity wise she would be okay, but unfortunately, it did affect her emotionally. At the time, which may be true with other families, it’s hard to see how a child with special needs can affect your other children.
We were told Matthew would never walk, talk or be able to push a manual wheelchair. Talk about devastating! I think it affected Ron more than me because I had had that recent experience with my EC class.
As we continued on our journey, I navigated unknown waters, although I had been blessed the year I was pregnant with Matthew. I taught a class that had a medically fragile child mainstreamed into it. The EC teacher and I collaborated on many activities that year. Her class was made up completely of children with medical needs. I truly believe it was God’s way of preparing me for my own child with special needs.
Fast forward many years, through trying to locate a daycare that would accept Matthew, IEP meetings where I felt he fell through the cracks, middle school years, where he was forced to take Spanish when it was hard to understand his English, to now. Matthew is a wonderfully independent teenager who dreams of going to college and playing wheelchair basketball.
CP has affected our family and friends in so many ways. It’s opened our eyes to challenges, but also to how blessed we are. It’s limited some typical activities we would have done, because Matt is in a wheelchair, it’s more difficult. But it has also helped us find a wonderful, supportive group of friends I consider extended family, through wheelchair sports. In many respects, it’s helped me to accept help when I need it, but also to push Matthew to become more independent.
How Do You Participate In The Community?
This has probably been one of our biggest challenges as a family. When my kids were younger, we didn’t have the knowledge of all the activities that parents hopefully do today. There weren’t parks that were accessible, or movie theaters that catered to noise sensitive children. We became pretty much home bodies, except for therapy and horseback riding. We tried to interest Matthew in new activities but this was a real struggle for him. So, today, we tend to stay close to home, other than traveling with our wheelchair sports. I stay relatively active through my school events, neighborhood events, and church, but both my guys would rather be home than anywhere.
What Would You Tell A Family With A New Diagnosis?
What I would tell a family with a new diagnosis is that there is sunshine amidst the rain. Find a support group, one who understands the type of special condition your child has. Ask questions and don’t just accept everything you’re told by medical professionals. We tried Hyperbaric Oxygen Therapy for Matthew, which our doctors were skeptical about, but it helped him tremendously. And whatever you do, don’t baby your child! Push him or her beyond their comfort zone into independence. That will be the best thing you can do!