Supporting families with special needs
Over the last two years I have worked to get back into shape. It's a mid-life crisis kind of thing. Being a tech geek, of course I use apps to keep track of everything from the food I eat to the miles I run. The other day as I was headed out for a run I turned on my app as usual. When I was through, I checked the app for feedback on my workout. I promptly found out how far I had gone and how many calories I had burned, but, much to my shock, according to the app I had burned hardly anything. I was really upset and annoyed, thinking the app was buggy; after all that work I had gotten very little benefit. Because I can't really read the screen on my phone without my glasses, another side effect of middle-age, I had to wait until I got back to my car to get a really clear look at the numbers: I had left my glasses in the driver's seat. As it turns out, I had set up the app wrong.
In some ways, this experience is a lot like many things in my life. Rarely do I see a complete picture of any situation. I am faced with a lot of confusion and uncertainty, like looking at my phone without my glasses on. We pray to God for answers, wondering why we get none. Luis Palau [briefly explain for people who Luis Palau is] suggests that we do, in fact, get answers, but that they may not be what we think of as answers.
The answer to a question may be no! God tells us that he loves us, and while we may think we should get what we want, sometimes we have no inkling of what's actually best for us, something God sees clearly.
The answer we receive may be "Not now!" Patience is a virtue I need more of. I hate waiting, but getting what I need at the time I need it is how God operates. If I can demand what I want, when I want from God, how am I supposed to learn that He is God and I am not? He is good and wants the best for us, but our best can't always come on our own preconceived timetable. God's in control: this is something we all need to know.
Another possible response to a request is yes, but not in the way you think. Hard times sometimes come, and they push us out of our comfort zone. God tells us He loves us too much to leave us the way we are, and answering our prayer might mean we can no longer stay the same.
Yes is always a possible answer; our God is a gracious God. But when I do get what I want or need do I see it as answered prayer? The hard part for me is to see the picture as God sees it; all good things are gracious gifts from Him.
Most parents will remember when their children grew too large or too heavy – or both -- for their stroller. For many if not most, it’s a bittersweet moment. After all, junior is growing up! The waddle soon turns to walking and then -- running. Life will never again be the same.
But what about this transition time for a special needs child? When my son grew out of his stroller and his cerebral palsy prevented him from following the “normal” process in learning how to walk, we found ourselves completely unprepared for the task of buying a wheelchair to replace his simple stroller.
We knew enough to call the insurance company. But, it was a disheartening experience. The representative informed us that what we qualified for was not even close to what our boy would really need. Negotiations ensued, our meager savings were tapped and somehow we made it all work – and learned a few lessons along the way.
Like a lot of people, we considered the purchase of the chair to be a necessary “evil” – like a tax bill or a new transmission for the family van. Looking back, I was probably a little bitter that we even needed to buy one in the first place. Though it was helping our son get around, we subconsciously resented its necessity. While other parents complained about their toddler wanting to run ahead at the mall, we only wished we had such problems. And so, the cost was just an added irritant. At the time, you never could have convinced me that a wheelchair was more a blessing than a burden.
So we plan the trip of a lifetime, to take our children to Guatemala, the country their grandmother comes from. It’s two years of planning and saving to make it happen. Off we go to Central America ready to see all the sites we can get to. When we arrive, I notice something I began to take for granted in the States: no wheelchair ramps. Not to mention the boat docks have boards missing, making them unusable for wheelchairs. Paths to ruins are inaccessible unless on foot or in a four-wheel drive. Even the hotels’ sidewalks are just plan impassable for a chair.
Stairs, stairs and more stairs. Not stairs as in perfectly built to some standard code, but stairs constructed by the Mayans, who apparently had very short feet and the stepping ability of giants. Stairways are built on the sides of 2,000-year-old temples that would have a condemned sign on them back in the U.S.
I was watching a cable news channel the other day. The discussion was about autism and vaccinations. It surrounded the doctors who did the original study that reported to show a link between autism and the MMR vaccine. Most of the doctors involved have denounced the study, and now someone says they altered the children in the study’s records and the lead doctor had an agenda. It seems certain the research was tainted. They also talked about more recent studies that show the rate of autism has grown among children at the same rate with or without the MMR (measles, mumps and rubella) and the preservative once thought to cause the disorder.
What was amusing to me was that despite all the information many parents of children with autism continue not to vaccinate their children, still believing that vaccines cause the disorder. They even interviewed a mother who told the story of her son who, she said, was a “normal” child until he got his shots.
I don’t know who is right in this story: are the doctors and studies trying to cover up the truth about vaccinations, or is this mom merely misguided? Maybe her child already had autism, but she didn’t really notice the symptoms until he was old enough to get the MMR. I can’t answer that, but I found it interesting that the commentator seemed shocked that this mother disregarded the “evidence” and continued to believe her experience.
Have you seen the soda commercial where a young man uses a time machine to save himself from situations like getting a drink poured over his head or getting punched? Even though the commercial is supposed to be funny and the things that the man goes back to fix are rather shallow, it made me think. What would I go back and change?
One thing, I might do: I would go back to when I was 11 or 12. I lit a fire in the field behind our house with my friend. While I knew we needed to control the fire and put it out, apparently my friend did not, because the next day he started a fire and burned several acres. It only burned the brush in the field, but I felt pretty guilty about the day before and wished I had not been playing with fire. Maybe if I had been there it wouldn’t have gotten out of control.
Perhaps I would go back to when I was a teenager. I was very awkward around girls, and when I finally got a girl-friend she didn’t really like me. She was just trying to get back at another guy by dating me. While I felt very hurt by her, it didn’t give me a reason to tell her a lie that hurt her in order to get revenge.
While I might go back to those events in my life and make them turn out differently, I know for sure I would go back to when our first child was born and tell myself three things.
