Supporting families with special needs
Ok - so I have several blind spots. By "blind spots" I mean things that I just don't get regardless of how clear they might be to others But lets face it. I'm not alone. As a profession, doctors have one big one and it revolves around understanding the emotions of parents who care for special needs children.
I have talked to multiple parents who feel as I do. Parents will tell you that all too often, the medical authorities are so busy staying on task and staying out of a lawsuit that they often forget who they are even talking to!
When a doctor suggested we see a specialist to check out some issues with our child , the doctor, whom I affectionately call "Dr. Death," gave us a shopping list of things that could possibly be wrong with our son. It buckled our knees. There we stood: overwhelmed and dazed - and all he could do was tell us we should undergo additional tests. It was cold and heartless. Hey Doc, did you know you just told me my perfect child had problems? Did you know that all the dreams I had for my child were just blown up? Did you understand that you sent my world spinning?
Stop me if you’ve heard this one: “Person gets amazing results by doing (place the latest fad here)!” The Internet is an incredible tool, but it is also bringing back many of the crazy cures that came and went before the Internet. I know that if I mention any of them in this post I will get an email from someone who tried that specific drug or exercise regimen and swears by it, so I will stay away from naming names. Suffice it to say, I sympathize with the longing for a cure that many parents feel. That quest leads to thousands of advertisements, millions of dollars invested in new research, and many, many promises of medical miracles that confront us on a daily basis. One of the best expressions of this longing for a cure is the movie "Lorenzo’s Oil" from 1992. In the film, a couple’s young son has a rare disease that has no cure. It is so rare that no one is even working on it, so the dad sets out to figure it out and finds a solution. Man how I wish I could do that! It has always broken my heat to see my children struggle with everyday learning and childhood trials; how much more so when we discuss disability. I want healing; I want some potion that makes it all go away.
That ache has caused me to chase some shooting stars over the years. Early on we joined a group of parents who pooled their resources to pay for therapists from Hungary to come and work with our children for the summer. The program was getting amazing results with children in their home country. The problem was that the children in Hungary would come to live in the school and have this therapy every day until they were adults. How did we expect a one month program to accomplish what was taking a lifetime? I don’t want to make it out like it was a total loss. What was evident was that these therapists demanded way more from our children than we felt we could ever ask of them. We did learn some things, but it was not a cure.
I am feeling anxious this month, and I think I know the reasons why. High on the list is that my wife and I are about to drive our first-born child all the way across the country to college. Not only is he is our first child, a boy, but he has a disability. Even though he's fully capable of taking care of himself, and this is definitely an exciting milestone, I will naturally still worry about him. And let me tell you, paying for college is something I will never get used to!
Another worry on my mind concerns one of my mentors Joni Erikson-Tada. Joni, who has done more for the physically disabled community than anyone else I can think of, is battling breast cancer. If you aren't aware who Joni is, she has an eternally optimistic spirit, even though she's been in a wheelchair with quadriplegia since a diving accident that occurred when she was 17. (You can peruse Joni's blog at http://www.joniandfriends.org/jonis-corner/
Part of my anxiety also stems from seeing some of my friends, with whom I worked side-by-side at a previous ministry, let go due to a lack of funds. Dozens of ministries, many of them doing incredibly important things for disadvantaged people, are struggling financially. It's difficult watching them being forced to scale back. Fortunately for us at Need Project, we have never had enough funds to be anything but scaled back, so we don’t really have to worry about a down economy.
Speaking of which, some of my apprehension might be because of the economy. It can be frustrating to watch governments on the local, state, and federal levels struggle with a perceived lack of funds; the first programs they cut are the very services needed by individuals and families with disabilities. Do you think government officials would take a cut in pay to help a family in need? Call me cynical, but I doubt it.
And you know what? That’s OK!
Maybe not to the extent that my wife did, but I had dreams of how my growing family would be. I knew how life was supposed to go – and just as importantly – how it shouldn’t. I would do many things differently from my own dad. Not that I didn’t have a lot of respect for him, but whether we had good dads or not, we always imagine we are going to be better. We have plans and dreams for how we’re going to structure our new lives, how we’re going to both teach and have fun with our kids.
But then it struck me: because of Kyle’s disability, there were things we would never do together. Gone was the chance to run and play ball together in the backyard. Countless other plans were destined to be scrapped. Plus, the added responsibility of managing a special needs child quickly changed everyday dynamics, especially when other children arrived on scene.
So many of my dreams were getting scrapped, and in all honesty, it just sucked. Thankfully, plenty of your dreams are going to survive this intact. But that doesn’t change the fact that losing many other dreams, to put it bluntly, just plain SUCKS. I know that’s the honest truth, and there’s no need to sugarcoat it. The important thing to realize is, we can’t allow this disappointment to make us do stupid things. We live in a messed up world; nobody’s perfect, everyone faces problems.
