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Welcome to Beirut

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  • Article summary:

    A new take on the well-known 'Welcome to Holland', this piece gives an entirely different perspective on being a parent to a child with special needs.

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Welcome to Beirut

There is a work called Welcome to Holland that was written by a very talented lady, Emily Perl Kingsley, about her experience in raising a child with a “disorder”. Well, she takes a far kinder approach to life than I do and so with apologies to her, I submit “Welcome to Beirut”. My apologies to Beirut as well.

“I am often asked to describe the experience of raising a child with autism - to try and help people who have not shared in that unique experience to understand it, to imagine how it would feel. It’s like this....” There you are, happy in your life, one or two little ones at your feet. Life is complete and good. One of the children is a little different than the other, but of course, he’s like your in-laws, and you did marry into the family. It can’t be all that bad.

One day someone comes up from behind you and throws a black bag over your head. They start kicking you in the stomach and trying to tear your heart out. You are terrified. Kicking and screaming you struggle to get away, but there are too many of them. They overpower you and stuff you into a trunk of a car. Bruised and dazed, you don’t know where you are. What’s going to happen to you? Will you live through this? This is the day you get the diagnosis. “YOUR CHILD HAS AUTISM.”

There you are in Beirut, dropped in the middle of a war. You don’t know the language and you don’t know what is going on. Bombs are dropping. “Life long diagnosis.” “Neurologically impaired.” Bullets whiz by. “Refrigerator mother.” “A good smack is all he needs to straighten up.” Your adrenaline races as the clock ticks away your child’s chances of a “recovery”.

You sure as heck didn’t sign up for this and you want out NOW! God has overestimated your abilities. Unfortunately, there is no one to send your resignation to. You’ve done everything right in your life. Well, you tried. Well, you weren’t caught too often. Hey! You’ve never even heard of autism before. You look around - everything looks the same, but different. Your family is the same. Your child is the same, but now he has a label and you have a caseworker assigned to your family. She’ll call you soon.

You feel like a lab rat dropped into a maze. Just as you start to get the first one figured out (early intervention), they drop you into a larger more complex one (school). Never to be out done, there is always the medical intervention maze. That one is almost never completed. There is always some new “miracle” drug out there. It helps some kids, will it help yours? You will find some of the greatest folks in the world are doing the same maze as you are, maybe on another level, but a Special Ed maze just the same. Tapping into these folks is a great lifeline to help you through the day. This really sucks, but hey, there are still good times to be had. WARNING! You do develop an odd sense of humour.

Every so often you get hit by a bullet or a bomb. Not enough to kill you, only enough to leave a gaping wound. Your child regresses for no apparent reason, and it feels like a kick to the stomach. Some bully makes fun of your kid and your heart aches. You’re excluded from activities and functions because of your child and you cry. Your other children are embarrassed to be around your disabled child and you sigh. Your medical aid refuses to provide therapies for “chronic, life long conditions” and your blood pressure goes up. Your arm aches from holding onto the phone while you are on hold with yet another bureaucrat or doctor or therapist who holds the power to improve or destroy the quality of your child’s life with the stroke of a pen. You are exhausted because your child doesn’t sleep. And yet, hope springs eternal. There ARE new medications. There IS research going on. There ARE interventions that help. Thank God for all those who fought so hard before you came along.

Your child will make progress. When he speaks for the first time, maybe not until he is 8 years old, your heart will soar. You will know that you have experienced a miracle and you will rejoice. The smallest improvement will look like a huge leap to you. You will marvel at typical development and realize how amazing it is. You will know sorrow like few others and yet you will know joy above joy. You will meet dirty-faced angels on playgrounds who are kind to your child without being told to be. There will be a few nurses and doctors who treat your child with the respect and caring that any child deserves. There will be people sent into your life who will show you concern and love like few others. Knowing eyes will meet yours in restaurants and malls, they’ll understand, they are living through similar times. For those people you will be forever grateful.

Don’t get me wrong. This is a war and it is awful. There are no discharges and when you are gone someone else will have to fight in your place. But, there are lulls in wars, times when bullets aren’t flying and bombs aren’t dropping. Flowers are seen and picked. Life long friendships are forged. You share an odd kinship with people from all walks of life. Good times are had, and because we know how bad the bad times are, the good times are even better. Life is good, but your life will never be normal again. But, hey, what fun is normal?

Susan F. Rzucidlo

Susan is the co-creator of the Pennsylvania Premise Alert system, a voluntary program that allows anyone with any special need or complex medical diagnosis to share their needs with local police and the 911 centers.

Susan and her family live in Chester County. Their second son, who lives with a severe form of autism, inspired Susan to become an advocate not only for him, but for all individuals who have special needs or complex medical diagnoses.


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