The Face of Love in Hospitals

On LinkedIn I send congratulations on work anniversaries to some of my connections. In many cases, I am not well acquainted with the recipients. Such was the case with this one. It turned into something more for me. I thought I should share it.

 Matthew,

Thank you for three years of good service at your hospital. I have spent more than 18 months over night in various hospitals with my special needs, medically fragile daughter. Her mother spent the other 18 plus months over night and 5 days out of seven for the three year total. I spent much of the weekends.

I tell you these things so you know I speak from a position of experience. We were not always appreciative of the efforts of your pastoral colleagues in the hospitals when we stayed with Sophie. Most of the time, we were scared or angry or very tired. The more evangelical the visitor, the less patient and welcoming we were.

As a really bad Catholic but a good recovering drunk (21 years sober), I was slightly more accepting of faith-based visitors than my agnostic wife. As a Catholic, I am proud to say that the Catholic pastors most clearly showed me Christ by loving us the best way they knew how. This is particularly true of some Catholic nuns who served us and God.

The best chaplains said things like “I am available for listening” or “Is there anything I can do”. Sometimes they just came in and took our food tray away. (As I write this I am moved to tears).

Thank you for the work you do for my brothers and sisters who are “in the hospital with their children”. God bless you and may you show people Christ in gentle loving action every day.

How is that for a “congrats” on a work anniversary.

Clearly these were humbling and grateful memories for me.

I may not be a good Christian but it is difficult to ignore Christ’s very best teaching. We say so much more with our attitudes and our action than we do with our words. I am always struck by the bumper stickers, WWJD. It stands for what would Jesus DO. It does not stand for What Would Jesus SAY.

How might I serve those I meet today? Today I will try to express my beliefs through loving action.

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..

They Can’t Treat My Kid This Way!

The Coming Attractions had only just begun when she exploded with noise. Her wheelchair nearly tipped over because she was rocking it so hard. Surely she was the happiest, most excited and loudest person in the in the entire world at that moment. Her parents were delighted with her first two reactions and trying to quell the third.  Happy, Great!  Exited, Excellent!   Really, really loud, …..Uh oh.

Literally, no one could hear the theater sound system. The other movie patrons were getting agitated. The mother tried to calm her blaring, vibrating daughter. The big screen demanded a big reaction and that girl was putting every cell of her body into hers.

 Then comes the usher, and out goes the loud girl. As she realized she was leaving, she quieted. More than a few movie fans cheered. Her mother was very angry, and hurt.

When people ask me about my daughter Sophie, I say, “Sophie is the happiest person I know.” She is among the loudest people I know as well. Like many special children, she can sometimes exhibit some socially inappropriate behaviors. The above story is hers. We were asked to leave a movie theater because she was unbelievably loud.[1] That time has to be her personal best in the loudness category.

As parents, it is unrealistic for us to expect everyone lovingly embrace our special needs children. Sophie is a fabulous, unique individual. Her special needs are an integral part of her identity; but everyone will not be her friend.

I don’t believe there are all that many card carrying jerks around. Ignorance and fear are behind much of the emotional separation between those with special needs and the rest of us.

Parents should demand fair treatment under the law. They should make schools live up to their legal obligations.  They can even sue our state, we have. But to demand that every citizen see our child with compassion, tenderness and friendship is unrealistic in the extreme.

Getting loud and militant about any unfair treatment of our children may feel justified. It may even feel great at the time. But as individuals we need to pick our battles. We have limited energy and lots of battles. Besides, we special needs parents sometimes get very, very angry at the wrong people. Our anger can have many sources.

A therapist’s office is a great place to vent our frustration, sort out anger, accept our grief, etc. They can help us with coping strategies, feeling heard and more. It’s what they do. Without the help of a therapist, special parents are operating with one hand tied behind their back. In one study cited by the National Institute of Health, nineteen percent of special needs parents screened positive for depression.[2] This figure is nearly triple the national incidence of depression (MDD).[3]

If you can’t make time for therapy, lack the ability to pay or you want to know more about getting support, send your friends and relatives to www.helpingspecialfamilies.com . Oh, we welcome special needs parents too. If the stigma of therapy or mental health care bothers you, definitely visit us. Send your caring friends and relatives too, if they visit, we will help them help you.

 

Note: Sophie now sees movies at a local church that regularly runs movies for a special needs audience. Local theaters sometimes screen movie just for a special needs audience at times that do not attract patrons, like Saturday morning.

[1] If I had just paid $11.00 bucks a head plus $9.00 for popcorn and $7.00 for a cola, I would have wanted that loud kid out too. Honestly, no one could hear the movie over her vocal celebration. Theater goers have rights too.

[2] https://www.ncbi.nlm.nih.gov/pubmed/23148978

[3] https://www.adaa.org/about-adaa/press-room/facts-statistics This figure is more than ten times the national incidence of Persistent Depressive Disorder.

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.