For most kids, summer means freedom: a chance to take a break from the structured school day and, well, let the good times roll. But for my 7-year-old son Charlie, who just finished kindergarten (a feat we weren’t sure he could accomplish in a regular classroom), the start of summer vacation this month has been a bit heartbreaking.
Due to Charlie’s cerebral palsy, he relies on a wheelchair to get around and a speech device to talk. For these reasons alone, he feared introducing him to public school. I had heard horror stories from other special needs parents: about children who couldn’t use the bathroom and who came home with diapers that had never been changed, children ignored by teachers and peers and left to their own (extremely limited) resources. I was worried that Charlie wouldn’t be able to connect with his kindergarten teacher or his classroom assistants. I knew that my son’s receptive language skills (what he understands and absorbs) are above average. But since Charlie was still learning how to use his talking device at the beginning of the school year, I was worried that his intelligence would go unnoticed because no one would care enough to bring it up.
Last August, on Charlie’s first day of kindergarten, I waited with him in our driveway for the school bus to arrive. He was in his chair while I knelt next to him, a position that comforted us both. I told Charlie what I knew about his daily schedule, reminded him of the name of his new special education teacher, and promised him again and again that he would see me again that afternoon. When the bus arrived, I waved him off, doing my best to hide my sense of fear for him.
To my surprise and relief, Charlie came home that afternoon exhausted, but happy. His bag was filled with the crayon self-portraits his classmates had made to introduce themselves. Charlie had found a welcoming community that was eager to interact with him and support him.
But now summer arrives and it’s the most difficult time of year for many families of children with special needs, a huge three-month gap in the support network that is so crucial to our children’s well-being. I had spent months worrying about how Charlie would do in public school. But, once he started kindergarten and I saw how much he benefited from daily interactions with his peers, I began to worry about how he would do once school closed for the summer. Although there are summer camp-style programs across the country that serve children with special needs, the cost of those camps is a burden for many parents.
Fortunately, we learned that there were extended care centers for children with these problems, called PPEC or Prescribed Pediatric Extended Care, which is what they are called, where they offer nursing care and attention for 12 hours and develop an activity plan during the Summer. That has been our salvation as parents, not only for the well-being of our child, but also for ourselves who must work and face the obligations of daily life.
I am discouraged, says a mother, by the displays of pity and concern for her son’s paralysis. Javier was partially paralyzed in a sports accident when he was a teenager. Three years later he lives as full a life as possible, with friends, studies, plus music and following all the sports that he loves. Still, she says, “when we socialize, everyone looks at us, looks sad, touches us gently and tells us how brave we are. I know they want to support me, but that makes me feel uncomfortable. And when I respond that her paralysis is not as problematic as she thinks, she goes on and on about how inspiring I am.
Of course, Javier is much more than his legs, so how could his mother handle this?
I think there may be two problems here: compassion that is well-intentioned but seems to have turned into pity. That would make a lot of us angry. Pity carries a smell of superiority. And I support her objection to her friend’s (implicit) judgment that his son is somehow inferior because he is paralyzed.
Sometimes not, sometimes friends and families get scared and mention it incessantly because they can’t imagine how they would do if they were in their parents’ situation.
So, and in these cases, as psychologists suggest, it is best to be direct and kind. Warn them that you, as his parents, have had time to process the accident and are enjoying Javier’s current accomplishments. And that’s why it’s best to focus on the current moment and enjoy Javier and his smile despite his disability.
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