Over the years I have written everything from the perspective of a parent. Since I am the parent of a child with cerebral palsy, I suppose this is natural. With the numbers of people who have told me horror stories of what churches have said to them, things like “please don’t bring your child back,” I have been critical of “houses of God” in regard to how they treat God’s people. Don’t get me wrong, I love the church, and when my own church didn’t have a special needs program I started one. My goal is to enable all those whom God is calling to have a place to worship.
I don’t think I would say I am critical of the church. I come at it more as a misunderstanding. I believe that if God’s people understand the issues, most churches want to do what is right, including everyone in the service and Sunday school program regardless of disability.
I recently spoke with a pastor who has put their disability program, which had been running for over 25 years, on hold while they figure out what they want to do. His thoughts were that they needed to stop and pray about what God would have them do. While I offered to help them in any way I could, and would gladly work with them to build a business plan and mission statement, the situation made me think about my expectations. What should I, as a parent expect from the church?
From a parents’ perspective, I have a Master’s degree in my kid. Our children are enrolled in the local school or I have moved them out because of problems, and while I might be happy at the moment, I might also be trying to get the services I think my child needs to be as successful as he or she can be. My whole life can be wrapped up in goal setting. I set goals with the school, the therapists, maybe even at home in an attempt to reach my child’s “full potential. ” I know this is important for each family out there, but should a church be expected to work in the same way? What is realistic to expect? I’m not letting the church off the hook, but when I say every church should have a special needs program, what exactly am I expecting?
When my kid was about three and still unable to walk my grandmother told me a story of when my cousin was about two years old and wasn't walking yet, they rubbed egg whites on her legs and she started walking. Well I didn't take that very well. If I remember right, I unloaded on her telling her that egg whites were not going to make my child with cerebral palsy walk. I probably should have been nicer to my grandmother because she's from Guatemala and this was her way of trying to help. But it got me thinking of all the miracle cures and slick brochures telling me how they are going to cure my child. What angers me the most is the fact that these so called cures are taking advantage of what is basic to all parents; the fact that we want the best for our child. Of course we hope and pray for that miracle. And I can't say for sure that all of the multi-level marketing claims are false, but I hate the fact that I can't be sure. And as a parent of a special needs child who has enough medical expenses already, I can't afford to try them all. Why they take advantage of those already vulnerable I can't imagine. I don't understand why the medical establishment can't be quicker to check out their claims. But one thing I do know. Somebody's getting rich, and it "ain't" the special needs parents.
Over the years, my family has interacted with countless medical professionals. They've come in all shapes, sizes and specialties. We've encountered them throughout the eleven surgeries of our son, the twice-weekly physical and occupational therapy sessions ?not to mention the routine doctor visits for check-ups and treatment of various illnesses.
We’ve had some real ?winners?over the years. And by ?winners?I’mtalking about those who made me wish it were still socially acceptable to challenge someone to a duel. Metaphorically, of course.
The legendary comedian George Carlin once said that somewhere out there is the world’s worst doctor ?and somebody has an appointment with him tomorrow. It might be me.
For example, I might have already mentioned the doctor who gave us our son’s initial diagnosis. I don’t even remember his real name - I just affectionately call him ?Doctor Death?.
This guy delivered the most devastating news of our lives with all the bedside manor of a Mack truck. To this day, I can see his exam room and I can remember sitting in the chair as he talked to us so callously about our beloved son.
Over the years, I’ve carried that hurt with me into most of our dealings with other physicians. Unfortunately, some of these doctors and therapists have reinforced my misgivings about the medical profession.
I wondered how they had managed to make it through years of working with parents of disabled children without someone ever telling them how awful and devastating their bedside manner was.
I’ve been struggling to keep my cool while composing this month’s column. You’ll soon understand why.
By now you’ve likely heard or read the story of the 7-year-old Russian boy whose American adoptive mother packed him on a plane and sent him on his way (alone) with a note tucked into his pocket that read in part:
After giving my best to this child, I am sorry to say that for the safety of my family, friends and myself, I no longer wish to parent this child. As he is a Russian national, I am returning him to your guardianship and would like the adoption disannulled.
See story: http://www.foxnews.com/story/0,2933,590863,00.html
Now, there are always two sides to every story. The woman in question, Torry Hansen, suggests she was never informed of the boy’s mental instability. Still, one has to wonder why she decided to abandon the boy when she just as easily could have pursued numerous other legal options, all of which would have given her the relief she so desperately sought.
Yet, the thing that angers me the most is the damage this incident has done to the families who are working through similar issues with both adopted and natural born children.