Supporting families with special needs
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 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?
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 mentioned last month that our home was spared from a horrendous fire that destroyed and damaged over 450 homes in our neighborhood. We lost our barn, our detached garage, and many trees, but having replaced some electrical wires we are able to live in our house. It took us three weeks to get back in, but we are glad to be home. Since returning I have watched our neighbors deal with devastating loss, as they sift through all that remains of their own houses. Most are in good spirits, talking about how they are coping and how dealing with insurance and contractors can be slow and unsure. I see large trucks rolling down our street taking away what remains of homes and barns and trees. Utility vehicles come and go, mixed in with heavy machinery that is on its way to help one or more of my neighbors.
Some days it seems like we are living in a fish bowl. People drive down our street, slowing down in front of every home, standing or not. They stare or take some pictures.
What struck me was how similar this is to being a parent of a child with special needs. The biggest difference is that no one is calling those dealing with the fire “special.”
Has anybody ever tried to console you by saying that you must be special? You know, because you’re a parent of someone with special needs? I have always hated that trite comment, because I don’t feel special. I feel like a guy who is trying to do the best he can with the circumstances he has been given. Those dealing with the loss of their homes aren’t thought of as somehow blessed by God because of what happened. People are seeing the fire victims’ difficulties as a life-changing event and rallying to help. Groups are coming into town to help them recover, and food and water are being delivered to those affected. The outpouring of help and assistance is overwhelming. We had the Red Cross stop by with a couple of councilors and a pastor to ask us how we were doing. Our church called us to see if there was anything they could do to help. Many of our friends have offered help, and have come over to help us sift and sort through the rubble. Our county officials are waving fees for rebuilding and replacing official papers lost. Everyone is being generous and helpful. Why is it not the same when we get the diagnosis of a special need?
Really, other than the fact that fire damage involves the question of having a roof over our heads, there are amazing similarities. What I don’t see is the outpouring of support, the rally of all those groups to aid those affected. Our individual difficulties aren’t on the scale of an enormous fire, but to a family in the initial stages of dealing with a disability the emotional and physical impact is much the same. Our state and local governments need to see the trauma, challenges, and uncertainties inflicted by a disability in this manner, and respond in the appropriate fashion. The Church and para-church organizations need to rally like they do in a disaster. The problem is that they often lack this urgent understanding of the situation. Disability is something always with us, and so it's difficult to grasp the full extent of its impact. Not so with a dramatic disaster, where the massive effects are impossible to ignore. So, most of the time, churches fumble around not knowing how to help, and we as the affected family often don’t ask for help. As I look at the houses down my street I see people cleaning up, others who are already rebuilding, and some who haven’t even started doing anything. We parents are in much the same stages.
I wish I could explain disability issues to my church, city and state in this way so they would understand the real extent of the problems we face. Special families are families in need, just as much as fire victims, and those needs demand a response. Hopefully we all get the chance to connect with various groups, working to make changes in the way they respond. That’s why Need Project exists, and why we continue to do what we do.
