Supporting families with special needs
I come from a large Latin American family. Strictly, we’re something of a melting pot, but we mostly identify with my mothers side of the family. My mom came to the United States from Guatemala in her twenties, met my father, and married him. My father’s side of the family is small while my mom’s side calls anyone who ever stayed at my grandmother’s house a cousin. Any family wedding would require a large hall just for our side to be able to come.
Some years after all of my mother’s four siblings had moved to the US, so did my grandparents. Though my grandfather died when I was still young, my grandmother, (who still mostly speaks Spanish,) is still kicking at 96 years old.
My family had a summer tradition of going on a camping trip to a lake in Northern California. We would take up five camping spots with all of our campers and water toys for a week of playing in the water and soaking up the sun. Everybody would come, including my grandmother.
When Kyle, our oldest, was about two, my wife and I decided to go on the summer trip. Thankfully, my parents offered us a bed in their RV so we could have a place for our son to be out of the dirt if he needed, since he couldn’t walk or get around without his own brand of scooting.
While in the RV one afternoon, my grandmother turned to me and told me the story of one of my cousins. She told me that when my cousin was young she wasn’t walking like me or my other cousins so they rubbed egg whites on her legs and in no time she was walking just like us.
I have to confess I didn’t take this story well. I yelled at my grandmother “My son has cerebral palsy! Egg whites are not going to make him walk!”
When I was a boy, the last day of school was by far the best day of the year. Teachers couldn’t give you any more homework for three months! And you didn't have to hand anything in that was past due. It was too late. Your fate was set, whether good or bad.
But the best thing about the last day of school was knowing that when you woke up the next morning, it would be summer vacation! I would always try to sleep until noon every day that first week of summer, but it usually didn't happen because my dad would have projects lined up for us to work on. Still, my friends and I would ride our mini-bikes all over the neighborhood. When we were younger it was our bikes, and when we were even smaller, Big Wheels (does anybody remember those?) We got soaked running and playing in the sprinklers and of course freaked out when we heard the ice cream man. We'd run into the house to beg money from Mom. We crammed so much activity into each day that the three months of summertime seemed to last forever – or at least like a whole year went by before school started again.
At some point during summer, we'd go on The Trip. You know what I'm talking about. Dad would take a week off from work so the whole family could go camping or visit relatives. If we went camping, we had a list of all the necessary supplies and checked them off one by one. Can opener, check! Coffee, matches, band-aids; check, check, check! All the essential items were packed into our homemade recreational vehicle, which was an old potato chip delivery truck my dad transformed into an RV. We called it the "Big-O" because it was orange. And then off we'd go on an adventure!
I am now old enough to know that life isn’t always going to go my way, and I’m OK with that. I’ve also lived long enough to make many big mistakes, and even some little ones. Thankfully, I’ve had time to reflect on my missteps, and do better in the future. With the benefit of hindsight, I’ve been able to answer at least some of the important questions that I’ve faced. It isn’t because I’m especially smart, but because I hit my head against so many walls that I finally figured out not to keep bashing it against the same spot. Thinking about my youth, I sometimes wonder what my parents thought of some of my most boneheaded moments. I know they tried to tell me things, to give me some of the wisdom they had accumulated, and I know I didn’t listen. How frustrated could they have been, trying to knock some sense into me?
As my children grow, I have constantly prayed that they would not have to make the same mistakes I did. I have worked hard to protect them, spent time driving them to therapy, to music lessons, to school events, all in the hopes of helping them become the best they can be. As a parent, I love watching them develop their talents, or overcome weaknesses. And yet it isn’t always fun or easy; sometimes it has been hard watching them struggle again and again to learn simple things. It is painful and frustrating.
I have preconceived notions of what my children should be capable of. Even with cerebral palsy, I assume my son should be able to do things that may be difficult due to his disability. You would think twenty-three years of living with CP would disabuse you of a lot of expectations, but this isn’t always so. Some of his challenges may not be due to disability per se, but just to who he is and where he is in life. Clearly, in some cases, my expectations of progress or ability are the issue. I deal with this when it comes to my kids and physical issues, but also to mistakes or blind-spots that can be chalked-up to youth, plain and simple.
I received an email the other day from an acquaintance of mine.Her correspondence contained both a question and a request.She asked whether it was cerebral palsy our son had and if so, would my wife be willing to speak with the mother of a child in their neighborhood who had just been similarly diagnosed?
Though my wife was the woman of the hour, it caused me to wonder what I would offer if the opportunity were to have been presented to me?What do you say to a parent reeling from the shock of such news?
Our son is sixteen years old and it’s a long walk back down the corridor of time to his childhood and those early and emotional days surrounding the original diagnosis.There are aspects of it etched forever – especially the moment we received the diagnosis from the physician.And some still bring a lump – like when Kyle fell from my hands while I was trying to help him put a basketball through a hoop.
Fear not – the fall didn’t cause him any permanent damage, though it did bruise and break my heart.
In retrospect, I think I spent a lot of those early years in a haze or was it a rolling fog?I kept waiting for the clouds to clear and the sun to break through, which it did, of course, more often than not.But looking back, it’s difficult to fully capture my emotions and provide an accurate portrait of my heart in only a few words.The best way I know to describe my mental state back then is to reference the growth chart pediatricians use during annual check-ups.
Do you remember them?
