Just over a year ago, I established the Cortical Malformation and Cephalic Disorder (CMCD) Foundation, after finding myself alone and with little information after receiving my son’s diagnoses. We went through a whole year of being told that our son’s nervous system was just underdeveloped and that he would be fine, only to be told a week before he turned one that he had two rare neurological conditions, periventricular heterotopia and porencephaly.
As time went on, we began to see the effects of these two neurological conditions. He developed seizures, his speech wasn’t developing, he had limited use of his left side from a stroke, he needed AFOs in order to walk…and the list goes on. It was at this time that the lack of opportunities for children with special needs started to become apparent. Before having Giovanni, I guess I had always assumed that these children were provided with the same opportunities as their typically developing peers because federal regulations were in place to make sure that they did. Boy was I wrong!
In the beginning, we did our best to live within the confines of what was accessible to us. Giovanni didn’t have the opportunity to participate in many of the things that other children his age did, but my husband and I did our best to supplement these activities with things that he could do. It wasn’t until one summer afternoon, when we went to our local playground for the first time ever, that reality hit. I felt my heart drop like a rock. My son wanted nothing more than to interact with the other children on the playground. He just couldn’t. He wasn’t able to climb over the barrier that held the woodchips in place; he didn’t want to walk around the woodchips, even after we lifted him over the barrier, as his shoes were filling with wood splinters as he shuffled on his toes; he was a bystander because he had to be. Even after being carried to one of the play structures, the lowest platform was too high for him to lift his leg up onto. My son did not have the opportunity to play on this playground; the playground in his neighborhood.
This whole experience is what empowered me to become the catalyst for change. This past January, our foundation partnered with our local municipality to bring the first inclusive playground to the area. This playground will not only meet the Americans with Disabilities Act (ADA) standards, it will go above and beyond to ensure that every child, of any ability, has the opportunity play. The ADA only requires that playgrounds provide ground level access to 50% of the play elements. How does allowing a child access to only 50% of a playground establish a socially-inclusive environment for all children? Simply getting a child with limited mobility onto the playground doesn’t necessarily enhance their play experience. It also does not take into consideration children with sensory deficits and other developmental issues. In addition to ensuring access, we must ensure inclusion. Our children deserve more than the minimum standards when it comes to playground inclusion and accessibility.
I am not going to lie. It isn’t easy trying to get people to contribute to a cause when they don’t even view it as a problem. One woman said to me “I don’t have a disabled child,” and I told her that neither did I three years ago. I also explained to her what an inclusive playground was. She had no idea. Unfortunately, not a lot of people do. This is where you can help. We need to raise awareness and educate those in our communities about the inequalities that still exist for children with special needs. If we do not educate them, how can we ever expect things to change? I am challenging each and every one of you to share this photo on Facebook, asking your friends and family to do the same. Not only are we going to prove that anyone can create change, we are going to start breaking down the barriers for our children. If we can just get one person to change the way they think, we have been successful!