“We have done all we can. We can try to help you put off surgery for a while, but that may not be a great idea”, Andrew said.
Andrew is one of the terrific physical therapists that care for us. They trained us in proper lifting techniques. They taught us proper floor sitting. But we were always tired and in a hurry. We did not use proper technique soon enough and the string was played out. Sophie’s Mom needed back surgery.
Sophie grew as we aged. Our relative physical abilities deteriorated. Years of lifting too much while using hasty (read improper) technique took their toll.
Sophie’s Mom, Jody, and I, developed physical and emotional health problems. These conditions sneak up on you. There was no accident that caused Jody’s injury; there was no single event that traumatized our psyches. The impaired thinking goes like this:
“It won’t be much worse tomorrow. Another week won’t hurt. Besides, we already have more than we can do right now. Some things have to wait. I’ll tend to that later”
The parents’ needs wait. There just isn’t time.
Special parents dream of extra time. But they don’t spend much time reflecting on such luxuries. When reflecting they often doze off. Reflection can be emotionally uncomfortable too. Rather than reflect, special needs parents often stuff their feelings and move on to the next thing. There is always a next thing.
I was a big stuffer. Today, I try to honor my feelings and voice them when and where appropriate. But before this enlightened attitude, I misled others and kidded myself. The “How are things?” question got the smiley, feelings lite, answer. “Oh fine, everything is fine. Normal? No; but we’re fine.” No one wants to sound like a whiner. This answer became a habit. We told white lies.
We did not want to be different, but we were.
Maintaining a relatively clean and smoothly operating household has its value. Routine is a powerful stabilizing force in family life. The consistent, predictable rhythm of everyday life engenders peace and a feeling of security. That everyday rhythm is part of what makes home, Home.
An unwashed uniform that delays Mom’s or Dad’s bedtime pops up in every family; “He can’t play in his underwear!” Hasty, twilight lawn mowing happens too. In many homes, events like these are negotiated with relative ease. These problems come and go.
In a special needs home, a predictable rhythm of life is the rare exception. Time pressure changes the nature of ordinary tasks. The daily routine can be difficult to spot. Tasks go undone.
Even under the best circumstances, everything takes longer with special needs kids.
Concerns about an aching back or a sore neck get pushed aside. “I’ll take an Advil at bedtime.” Persistent bouts of the blues are blamed on fatigue. “Sleep? Who has time for sleep?”
Special parents are frequently too busy and too tired to notice of every little thing. These little things accumulate for years. A four vertebra spinal fusion surgery can result from small, daily insults to the body. The daily emotional struggles become mental health problems. A neglected relationship becomes marital problems.
The parents themselves can’t see it. Others are constantly told “We are fine.” The alarms from the parents of the special parents go unheeded. Special needs parents are “Fine”; then they are shocked by the obvious and think, “We should have paid attention sooner?”
Special parents sacrifice care for themselves and each other. They lack time. Kids’ food, clothing and shelter always come first. Parents’ sleep, diet, exercise, soreness, injuries, annual physical, date night, talk with a professional, etc., are all downgraded to secondary status. Even quality time with each child is often lost.
Special parents need more time. And they need a plan to use the time wisely. This time needs to be used to care for themselves and each other. But they cannot do it for themselves. They need help. You and others can help the special needs family in your life to create this badly needed time. A little organization, a little know-how and a small of time can make a huge difference. Ordinary people doing ordinary things can result in extraordinary, special families..