Ah, Labor Day weekend. Time to go camping. So I hook up the trailer and start loading. Don't forget the wheelchair, and the walker so he can do some therapy. The leg braces, AFOs and special shoes. I pack the kids' bikes but skip the special bike. Don't forget to put the urinal in the truck. (It's just too hard to get him to the trailer bathroom). My family had a hard summer; we didn't do much more than trade off going to another state with my son for his surgeries (three in all). Major reconstruction of his legs was needed because of his cerebral palsy. We thought it would be fun to take at least one trip this summer. We went with friends who have six children. I watched as they all ate and dressed and trekked off to the bathroom together. And I thought, Wow! That is a lot of work. Then I thought more about it. I have three kids, one of which has special needs. Some folks look at us and say, "Wow!" I have come to realize lately that so much is relative to our situation. I sometimes feel overwhelmed by life-but so does every family. Ours is just different. While I had a hard time packing up for the weekend, others had a hard time dealing with the day's events. Does having a special-needs child make me tougher or somehow a better person? I don't think so; I think it just means I have a unique situation that requires me to do things differently than others would. I have bought things to make my life work, like a trailer and truck and wheelchairs, and even a house. We are just a family trying to make it though life and, hopefully, have a little fun along the way. By the way . . . we had a great weekend.
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 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?
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.