Meg Casey
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"Most Able Disabled"

Meg Casey's handicapped issues column

Meg Casey
Meg Casey with her mom
photo courtesy of the Casey family

Greatest Show On Earth, A Loving Family Unit

A Good Parent Works At It

May 8 1985

Hello Readers,

Parenthood is such a big job to do well. Given the added complexity of today's social problems picking up unwanted influences from the outskirts against all of our good, loving interactions within the house, makes the tough work to be done as a parent even tougher. Tougher, and sometimes frightening.

It can be very frightening to try and contemplate what life could be like for our children in the future. "Who is to say what tomorrow will bring? "…

Trying to pre-plan the pattern and process by which we will train them and guide their lives is often mind-boggling and very sl-o-o-o-w, but well it should be. We are, after all going to blend together until they become a cement like mixture that will then be poured into the pattern of framework we have laid out so carefully upon the ground. Then we just have to sit back, watch, wait, and watch for that surface to the firm up and harden.

That surface will become the foundation of our children's lives, made up of all of the things and reasons that help to make them each into the individual personalities that they will turn out to be. Each one will, amazingly enough, have a personality uniquely all of their own even though we could have sworn they'd all been treated the same!

In the end all we can really do is our best. After that is done say a good strong prayer to the Lord whose in his hands it rests anyway, and hold our breath as we watch these kids grow up! Naturally, every step of the way we'll hope like heck that the patterns and recipes we chose to use were good ones and that the foundations we patterned for our children are proportionately suited or at least are accessible to the style of structures they will choose to build for themselves to suit their own tastes and dreams of their life.

It is a constant job of reminding ourselves that when all is said and done, it will be "their own life." Be careful not to misjudge the dimensions of the foundations we lay nor the amount of mixture and consistency of cement mixture we attempt to pour so perfectly into the size framework. Sometimes parents prepare the ground for a mansion but the child is a cabin builder, or vice versa. Encourage them to be the best he or she can be. Being over-estimating and demanding can be as damaging as being constantly under-estimating and restricting to someone's potential talents, enthusiasm and overall confidence in themselves.

A small sturdy cabin can weather many storms and give many happy memories of being cozy and warm together, too!

Dealing With The Stares

July 20 1983

Meg, I don't have the strength to deal with the stares … with people staring at my child diagnosed as having progeria. If I can't handle it now when her condition really isn't that obvious what am I going to do when it is? How am I going to protect her from all of the hurt I know it will cause her?

Dear Daddy: You are definitely taking a monumental task upon yourself, protection against hurt. It's rather like shoveling sand against the tide or perhaps yours is a more non-active role at the moment similar to Atlas having the weight of the world on his shoulder as he stands there.

That world is a pretty huge place – Full of a lot of people and things that add to its weight and it's getting fuller all the time. What is the expression? "There's one every crowd". Although I tend to call them, "jerks" (among other things). Sometimes it seems as if you just get rid of one and there's another. So you better get used to it because they'll always be barking somewhere.

Your beautiful little girl just turned a year old this month. Her big, bright blue eyes are positively popping up with excitement and wonder in all that she sees. Fun in the flowers she can hardly wait to rip apart to the bug she chases in the grass, life is great!

In the first five years of development the physical, emotional and intellectual growth of a child is enormous. The metamorphosis in which they change from the squirming, squeaky bundle into a little independent person ready to make her very first decision and have an opinion, is pretty breathtakingly beautiful and so rapid it's sad. You can't possibly have an instant snapshot of every single second but those seconds can never be recaptured. Please don't waste them away by staring off late into the distance looking for something that may not be there yet. Believe me, you'll know when an idiot arrives. With experience you'll feel to hear them coming a mile away. With time you'll even learn the insignificance of their presence and be able to help your daughter learn it also.

This game is new with you and your young family. Undoubtedly, the fact that all you've been given is a game board. playing pieces and a disgustingly incomplete set of instructions is scaring the hell out of you. That is perfectly understandable. If you didn't experience these normal fears we could worry a little.

Take your time, ask your questions and face those answers what you do or don't get as best as you can. Either find the way to deal with the public out of the depth of the love and pride you have in your child or take acting lessons. The strength of your performance, especially during those public appearances, will either make or break your child's confidence in herself. I haven't met a kid yet who couldn't spot a phony in an instant. And let me assure you that the older a "special child" becomes the keener her senses are for judging a fraud accurately. Look at your baby. Do you love her with every fiber in you? Are you ashamed or embarrassed about her? Even slightly? Sort it out and decide now which it is. If the latter feelings can't be denied then admit it and get help for yourself because you have the problem, not the child. If the first is the truth then hold your head high and make that love absolutely radiate out of your eyes. Wear your pride in that little girl on your chest as if it were a shining medal for all to see. As you strut through the crowds, look them straight in the eyes. I guarantee that the obvious confidence you exude will part the way for you. And when you get a chance, take a peek down at who will be strutting her "feathers" right besides you.

I didn't get to be a cocky little trouble maker from just anywhere! I always knew that I was loved and that my family was very proud that I belonged to them.

Always show "your sweetheart" just how wonderful you think she is. She'll learn how to react to life by your examples. You'll be her hero, just like every daddy should be in his daughter's eyes.

But for today, enjoy the baby's exciting experiences. Introduce her to all sorts of people, places and things that this old planet has to offer her. Stop fighting the tide and show her how to swim and jump the waves. Take the world off your shoulders and roll it between you so that she can see for herself how much fun can be found in it.

Ignorance Separates People

May 18 1983

I feel that my parents are embarrassed because I have a disability and they make me feel guilty for being what I am. How can I convince them that I am a person they can be proud of?

Dear B.

Yours is a difficult question to try and come up with a perfect "cure all" answer for. It is a potentially dangerous one for me be be playing with too, because I would never want to do a disservice to either you or your parents by making judgments without knowing all the facts. I would be in for a tremendous guilt trip myself if I don't ask you to make sure that you haven't misread the situation at home.

I can only imagine that it took a very good brave person to turn and seek outside help at the risk of personal embarrassment. You must love your parents very much want to want to win their pride in you so badly.

Throughout history the societies of the world have separated themselves into different "types" of people. Of these "types" ranged a degree of desirability, some being considered better than others to be around for one reason or the other.

Yet even among these segregated groups there was another, common division of the ranks made which sorted out the able bodied from the disabled, who were then packed away in a box somewhere and hidden in the back of a closet. Never to be seen or heard – and only spoken about in charitable but embarrassed whispering tones. Why? No one really seems to be able to pinpoint the "exact" reason, but ignorance seems to be the general consensus. Both the ignorance of not knowing the whys or how to properly treat the people medically, and the blind ignorance of continually repeating old mistakes because "that's the way it has always been done," without ever asking to understand the reasons why.

Things have come along way as far as the rights of the disabled are concerned. Mainstreaming our lifestyles is more and more accepted every day. However once in a while we may become snagged. The trick is to not to let it shake our confidence in ourselves.

Don't be too hard on your parents. Peer pressure is a terrible thing to overcome. It may seem odd to try to picture your parents dealing with a reputedly juvenile problem but you never really grow out of it. Society still repeats that old mistake of "ignorance" surrounding dealing with people with disabilities.

Perhaps your parents are victims of that society. Just as all of the disabled must get out there and show the world what they're made of, and teach some long-needed lessons in order for a permanent change to be made, you will have to teach your parents not to be afraid to open their eyes to the beauty of really seeing you – maybe for the very first time.

Whatever the results of this situation turn out to be, remember the most important person to accept who and what you are is yourself. Don't let a hangup that your parents may or may not have cloud the vision from your own eyes. Look inside of you, feel the strength of your desire "to be" and know you're worth in this life.

Be happy!

Uncrossed Words Fix Crossed Wires

September 7 1983

I have an older brother who has not been well since birth. I love him dearly but sometimes I get so dejected because my parents, our home, our very lives revolve around him as does the planets and the sun. I am a rather good athlete and good student but never once have my parents been to a game or even asked the score. I don't think they even know that I make the honor roll every time. How do I make them realize how I feel without sounding like a jealous sister?

A very lonely sister

Dear Little Sister,

Take heart friend. You have a right to receive your own social spotlight without feeling guilty about trying to upstage anyone else in your family. Plugging into the main power supply of your household should not lessen the deserved importance of the other acts on stage but assist in making up one of the Greatest Shows On Earth, a loving family unit.

It is unfortunate but not uncommon to hear the same problem been discussed among siblings of in-firmed or disabled people from many families. There are peer support groups set up to help kids, and other family members come to express those feelings and seek the appropriate solution to help themselves.

It may be necessary to reassess the strength of the energy voltage supplying your family's unit to ensure that the course you take doesn't overload and blow an already over-burdened circuit. It may be the matter of a simple rewiring job whereby a few words - like wires - become uncrossed through open communication, to allow more even distribution of the love flow.

Regardless of what takes, you are worth the effort and must believe in that. It may be necessary for you to drop one of those boulders on your parent's feet to pin them down in order to get their full attention; but do it if you think the rewards are what you want.

It may be necessary for all of you to go as a family to be helped through this time but you are not going to know one way or another unless you talk about it. Open those lines of communication with your brother. It could be he hates his getting all of the attention as much as you do but is fearful of sounding like an ungrateful child. That could be causing him to have a double guilt complex towards you as well as your parents.

For that matter your parents may suffer guilt feelings about their own inadequacies for handling the situation and have fallen into a routine and pattern because they've never known where else to go or what to do for their children. Talk to them. It isn't easy to be a parent, to always do the right thing.

When one child becomes sick or hurt all concern centers there and all energy is expended toward making him better. Years and years of this expenditure takes its physical and emotional tolls on everyone. Free-flowing expression of feelings is the best medicine to take on its rehabilitative ratings are astounding, keeping the stress factor minimum.

You're taking a first step by writing to me. That was a heck of a public start. The next ones should be easier.

Retreating to "His Room"

December 7 1983

Dear Miss Casey,

Richard is 17 and is not retarded. He mostly has a behavior and emotional problem, and some autistic tendencies - mostly like spending his free time alone in his room.

Richard's mom

Dear Richard's mom,

As for your son spending time alone in his room, that doesn't sound too strange to me because at 17 so did I. The teenage years can be a very lonely time in life for someone who is different from his peers. What does he do in his room? Does he ever listen to music, read, doodle on paper? Or maybe lay on his bed, stare tat the ceiling and think? So did I.

The older a child becomes the greater is his need to declare his independence and right to privacy. A child who feels different from everybody else doesn't always have the confidence or know how to make that declaration. Retreating to his own specified territory in the house – "His Room" – and closing "His Door" to everyone and everything else may be saying it for him silently without him or you realizing it has been done.

I shall look forward to hearing from you soon of your decisions and how Richard is doing with it all.

Misbehaving Blind Child

September 26 1984

Dear Meg,

This summer I had the daughter of an old school chum come to stay with me for a little while. Her mother, passed away quite suddenly two years ago leaving three grown children very surprised and grieving, along with several grandchildren and an "old friend" who also feels her loss. Life for this young woman has not been the easiest since her mother's death. Completely blind since birth, she was always her mother's "special angel" and certainly doted upon as a child. That's a long time to have received her mother's attention.

The transition between times has been a hard one for her so far and for some reason the relationship between the siblings has and been very hard. I had thought that perhaps she and I might be of comfort to one another during her stay.

I must say I had been warned about what I was getting into. However, the demanding individual I confronted myself with for two weeks was nearly more than even I could handle. There were a couple of times there when my house guest came dangerously close to receiving her dessert atop her head instead of having it placed nicely before her.

As a child she was allowed to stay at home because she did not like to go do any of the schools her parents had tried to get her started into. She learned to read Braille and such skills as she would need to get along physically, but never developed any social skills for interacting with other people her own age.

But now she has her own apartment and holds down a fairly decent job at a local bank. She doesn't see much of her sister I understand because they are two distinct and determined personalities and clash at every turn. Her brother lives across the country and evidently shows no definite concern about the situation in the family, this is very sad to me.

I was hoping that you might be able to give me some insight into the matter, so that I might try to help this lovely young woman enjoy all that I can show her.

Hello Maryanne C.

Perhaps sibling rivalry may be causing the interfamily separation. It is amazing how deeply childhood hurts can scar personalities in the grown-up person. "Unfair" over attention to a seemingly undeserving brother or sister has caused hostilities that have started wars throughout history. Communication between them all where an open and honest exchange of feelings and impressions and interpretations of how their lives have been is the only way to get it over with. Just as an infection may fester until it is lanced and the infections's bacteria must be set free and then left open in the air to permit the poisonous feelings of anger or bitterness caused by something in their family life together be opened up from inside of their hearts where it is only festering and infecting their whole attitude about life. The release of the hurt will be a relief to their minds and hopefully they would stay and work out the differences together once they know exactly what each other's problem was.

As for the woman who is blind, perhaps she is also blinding herself to all that she is afraid of finding outside her familiar surroundings. Only loving support and understanding can give someone persistence to keep on trying again and again. Tell her to try!

Handicapped Schooling

July 27 1983

Dear Meg,

What about schooling for our child? My wife and I often worry about the choices we make for his life. There aren't any answers available for treating progeria.

Knowing how cruel children can be, we dread the thought of subjecting him to their teasing. In sending him to public schools; are we doing harm? Will learning to cope with it strengthen his character or will it be his secret torment?

Dear Concerned Dad,

Small children are very accepting of differences and for the most part find them desirable. I was "neat," never at a loss for a playmate. My first nine years of schooling were spent with all the same classmates. Our innocent friendships grew into wiser friendships as we grew older and expanded with worldly knowledge being absorbed from the different sources in our lives.

The world is a really exciting place in my opinion. I love meeting new people. This outlook is undoubtably due to my positive upbringing and good experiences in dealing with strangers, young and old. But when you get down to the best roots of my confidence, you'll find my family's influence entirely.

Similarly, the influence of the example that you and your wife display towards your child will greatly determine how he will face the world. If your son feels that the people he loves and trusts the most, his family, are insecure about him how can he ever expect to feel secure with an outsider? If he feels that he is the source of arguments at home, guilt can become another undermining factor. So please beware of the possibility.

I think if you base everything you do for your child on the firm foundation that you love and are proud of him and let him know constantly know it, you won't go too far wrong. Encourage him. Ask him to tell you if something is troubling him. Be prepared to give answers. You can also speak to teachers and school officials to be sure that your child gets his special needs taken care of. In my own case this was in the line of seeing that I wasn't involved in any "rough" activities in a way that I might become physically injured. The teachers will probably be grateful for your interest and concern and be more than willing to help. Take him by the hand – lead him but don't push him; keep your antennas up for all signs of trouble; encourage him to think and to do; but most of all – LOVE HIM.

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photographs and other content courtesy of the Casey family unless noted
blog posts and art by Meg Casey
originally published 1982 to 1985 in the Milford Citizen newspaper