Supporting families with special needs
Over the last fifteen years I have had the wonderful pleasure of meeting many people who are doing wonderful work with and on behalf of those with special needs. Many of them are working in very unique ways or areas to make life better for those with special needs. All of them speak of the vision they have or the experiences they themselves have had that gives them the drive to make a difference. These organizations are as unique as each person, and while their goals are different I have wondered if there is one common theme or statement which all of us are working on. Not a direct mission statement for each group but an over arching statement of the ultimate goal which we all have been uniquely gifted to address. I see this like the metaphor of many oars in the water rowing in the same direction. Is there something we can all state as the ultimate result of our work? It can’t be something small it has to be a goal, which we cannot reach on our own, it has to be something that even with all of us working together, still requires God’s intervention to accomplish.
The difficultly in developing this goal, may be the very diversity of the people we serve. For example we have created Sunday school classes for every age in our church, our church serves nursery to adults every week. Despite having these programs there are those in our church who don’t want their family members in our classes. They come every week and sit in the service or out in the lobby viewing area or continue to work with the youth department to have their child go to the standard Sunday school options. I have felt a twinge of hurt at times as they pass our room knowing we want to serve them, but I also need to understand that involvement in our program is not the ultimate goal. Having a different classroom to many, could be only a stopgap measure on the road to an ultimately better scenario.
I recently came across an article about a family that had made what many consider to be dramatically controversial decisions about their daughter. Young Ashley is severely disabled. According to her parents, in an effort to improve her care and protect her in the years to come, they authorized a hysterectomy and also removed her breast buds and appendix. This all happened three years ago. They also currently have her on high doses of estrogen to minimize physical growth. It is estimated she will grow to be about 4’ 5” tall at full maturity.
[See story http://www.foxnews.com/story/0,2933,241279,00.html]
The reason this came up now is that the doctors involved wrote a paper about it for a medical journal. Predictably, reaction has been passionate and mixed. So much was said about this that the parents finally wrote a response and posted it on the internet.
[See: http://ashleytreatment.spaces.live.com/]
Consider the statistics from our one son’s life: Ten major surgeries over the course of fifteen long years.
Admittedly, this is sometimes a very strange existence. Recently, my son said he was wondering if all this is a test or just a random and unfortunate cruel act of life. Is this part of God’s greater plan?
His tenth surgery was to fix what went wrong with surgery number nine. This set him back an entire year, causing him to have to work extra hard to just get back on his feet.
He said he is trying to not be angry, but it seems to me that he has very good reasons to struggle with these types of emotion. Of course, a lot of his anger is masked as fear: fear of how the new surgery will go and the worry that it won’t go as planned.
Thank goodness the elections are over! I don’t think I could handle another commercial telling me how one candidate or the other was too extreme. As if there is a “mild” extreme.
I don’t know about you, but it sure was hard to get a real sense of a candidate’s views based on television portrayals alone. For instance, I saw one commercial that claimed a candidate wanted to “rip up” the Constitution. The very next commercial stated that the same candidate wanted to “get back to” the Constitution.
Then there were the infamous robo calls. My phone practically rang off the hook in the weeks leading up to the election. In each call, someone practically begged me to vote for a particular candidate, and based on what, a mere phone call? It didn’t take long to start screening our calls through the answering machine. Being bombarded with ads on TV was bad enough; I didn’t want to hear more of them on the phone all day long, either. I think I would have started pulling my hair out.
I heard that a record number of dollars were spent on this recent election. An estimated $394 million was squandered on advertising alone. In the California governor’s race, one of the candidates dished out $160 million, only to lose. Does that sound completely outrageous to you? It does to me. And why would someone spend $160 million in an attempt to win a job that pays around $250,000 a year to begin with?
It pains me to see so much money being burned to support a person’s ego. I’m not saying all the candidates are egomaniacs, but it just does not make any sense to dump so much money down the drain in an attempt to procure a job that lasts 2-6 years, at which point the process starts all over again! I guess it shows to what lengths those who crave power are willing to go.
Time can often take its toll on us in a variety of ways.
After 17 years of marriage, my wife and I will sometimes communicate in ways contrary to the methods of our newlywed years. Admittedly, there are some days when our conversations are reduced to a series of grunts and groans only perceptible to us, and maybe one of our children. Believe it or not, the exercise is a highly tuned system meant for the other that conveys the exhaustion of the situation or maybe the exhaustion with the other. Mainly me. I am a man prone to all things stereotypically male. I revel in routine and I’m not prone to appreciate change.
Granted our grunts and groans aren’t always ideal, but we’ve used this system to communicate with each other when our words are barely audible and the composition of a full sentence is deemed cruel and unusual punishment.
