Supporting families with special needs
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.
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.
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 had a crazy thing happen to me this month. My middle son and daughter are in their high school’s marching band. (Don’t talk to me about how old I feel right now, with my youngest in high school). Of course, since both of them are in the band, we are heavily involved. My wife is the band boosters’ secretary and I am working in the pit crew; we carry all the equipment to the field.
This means we show up early to band events and help. A month ago we showed up for a football game because the band was playing during the game and at halftime. I was driving my truck, so I parked in an open spot a little further afield so that I would be able to fit. I was coming from work and my wife was coming from home, so we met at the school; she brought me a change of clothes so I could be warm and comfortable. I saw her pull into the parking lot and went over to her car to get my clothes. I thought I would be able to go back to my truck and change in the back seat. As I made my way to the truck I saw that the parking lot had filled around it and another truck was parked next to me. Curiously, several high school age boys were looking at my truck and pointing to the area around my driver’s side front tire. When they saw me coming they all turned and walked to the back of their truck, so I was suspicious. I unlocked my door, and as I began to pull it open it made a horrible noise. I closed the door and looked with horror at a fresh new scrape across the side of my truck.
