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 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.
I use to think the old Doris Day song was cute. My mom liked it and would sing it sometimes. The song is about a girl asking her mom if she was going to be rich or if she would get married or so I remember and the Mom's response is que sera, sera what ever will be will be the futures not ours to see que sera, sera. As a parent of three children I guess it is true that I don't really know anything about my children's future. But I assume my two younger ones will grow up marry and move out. Not so with my oldest. With his Cerebral Palsy I don't know anything about his future. He's smart, and some would say mild as CP goes, but just doesn't have all the tools I would wish he had. Is there a lady out there who will love him and help take care of him? I have no idea. I know I can't see the future, but it sure hurts to think that my child may live with us the rest of our lives, not to mention what happens after us. The pain is not that I will never be an empty nester. The pain is that my child may never know how knock kneed I was on was on my wedding day or the joy and fear I had when he was born. Life as we expect it to be may not be the same for him. When I cry over this, it is as a father wanting everything for his Children, and knowing that it just might not be. Is the song true? It is. Do I like that fact? Not one bit!
O.K.I’ll admit it.I spend way too much time on the Internet.Am I alone?You might be thinking the same thing at this very moment.
A colleague of mine who refuses to “surf the web” defends his objection to the World Wide Web by declaring cyberspace a “black hole”.There’s no end to where you can go once you get in and no easy way out once you’re hooked.I counter that it’s all a matter of balance – and finding productive sites to spend your time on. But oddly enough, I’m fairly neutral about many of items I read online.In other words, I neither agree nor disagree with the perspective, but for some reason still read on to the bitter end.
Occasionally, I come across an item that makes my blood boil.Lately, I’ve stumbled on several stories that I feel compelled to comment about. They surround the issue of educating those with special needs.
While most people’s comments about this matter center more about kindness and society’s moral obligation, several offer perspectives akin to what many people privately think, but are just too politically correct to say in public.
The comments go something like this:
Special Education is expensive and we shouldn’t have to pay for it. Or even more charitable: Special needs kids are a drag on the system and bring its overall quality down for everyone [translation: the normal ones] else.
My son participated in an academic speech competition a couple of weeks ago. As we waited for his turn, we had the opportunity to listen to the colleagues that preceded his presentation. The topics were varied and ranged in substance from the history of pants to the so-called "right to die with dignity."
The young girl who spoke on the latter matter actually suggested that the "right to die" law in Oregon had actually improved the quality of life for all Oregonians. She offered no proof of this, but nevertheless appeared fairly convinced she was correct. This young student took great pains to stipulate that the law wasn't for "healthy people" but rather, only the terminally ill and those who were physically and mentally handicapped.
As we sat in the back of the room, my son in his wheelchair, we were dumbfounded at the amount of times she tried to convince the crowd that the freedom to commit suicide had somehow bettered life in Oregon.