Shocked by the Obvious

“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..

HelpingSpecialFamilies.com (Sort of Still Under construction)

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Welcome to HelpingSpecialFamilies.com

Everyone was laughing, Sophie most of all.  After waiting in the doctor’s office, we were headed home.  Sophie, like most of us, does not like to wait. Sophie did not have to wait anymore today and she was pumped up!  We were all laughing because Sophie was laughing; it was her most infectious, raucous laugh. It is a very loud belly laugh with a few high pitched notes for punctuation.

She was so excited that she he was rocking the van. She literally moved the van from side to side. (Strong wheelchair tie downs) She gets some very interesting looks whenever we are stopped in traffic and she’s rocking. Sophie was happy. That was a great afternoon, for Sophie and for our whole family. Sophie is my daughter. She is, without doubt, the happiest person I know. We treasure these kind of moments.

You did not end up here by accident.

If you found this site, you probably live with, work with or have an interest in a special needs family, persons with special needs or special needs parents. If so, you are in the right place.  The principal purpose of HelpingSpecialFamilies.com is helping special parents. Not just with advice but with tools that can actually give them time to care for themselves, each other and all their children. Here is the rub. The tools and services that can create this time cannot be engaged by the parents themselves. They need emotionally  involved help.

I am neither an expert nor a professional in any special needs related field. I am merely an experienced special needs parent. My bona fides can be found in the various posts entitled Our Story. Insights, research and advice from all sorts of professionals will grace these pages too. My mission encompasses education, service, inspiration and hope. My principal concern is the health and well being of special needs parents.

Special needs parents are badly in need of time to follow the advice of their professionals. In addition, they must have time to care for themselves and each other. Usually, the first casualties are self-care and the love relationship between the parents. Yes, sleep is self- care. And with the higher levels of stress, exercise is vital too. Proper diet, a social life and peace of mind are important aspects of self-care. Rested, healthy and happy parents are better able to care for their children. That is the real point of this blog, helping mom and dad in real, tangible ways.

If I can share something that gives peace, strength or hope to special needs parents, I am thrilled to do it. If I can help love ones, friends and neighbors help their special family; I will be achieving my goal. I hope you will elect to receive email notices about new posts.