Raising a Disabled Child…

Memory… Gift…

I wanted to share this explanation of what it is like to have a disabled child…

They could have been born with numerous diseases or disabilities…

I worked with “Special Education“ children for 30+ years…

but, I also have a son who has suffered… and I do mean… still suffers… with Bi-Polar Disorder…

He is now 41 years old…

but, the world we have lived in … has been and still is… quite extraordinary…

Some sad… awful… devastating days… 

but, some joyful… funny… and inspirational…

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WELCOME TO HOLLAND
by
Emily Perl Kingsley.
… c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby , it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice . You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland .”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place .

So you must go out and buy new guide books . And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills  ….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go . That’s what I had planned. ”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

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I read this and I can so relate…

The questions??? WHY?… What Happened?… How can we fix this… Is it curable?… Is it forever?…

The jealousy… of those with children that seemed to have no problems… Being mental… others didn’t think we had a problem… It didn’t show!…

The sadness… the loneliness… the feeling of the unknown…

The isolation… People didn’t understand…but, sometimes had lots of answers… Oh, if it was that easy!…

The bragging that seemed directly related to you… Other parents relating how happy they were… what joy they had… and I was in such pain!

The places others could go… Trips… Going out was always with a spoonful of caution… of how things would go… what kind of day are we going to have?… Ups and downs like a roller coaster!…

The never-ending thoughts of what can we do???… Visiting many Doctors, Psychiatrists, Behavioral Experts, Medications, Tough Love, Meetings…

The loss of friends… I withdrew… went into depression… and others didn’t know how to react to our son… and could only see a very disruptive, angry child… They think we have no control… are bad parents… spoiling… not handling things the way we should…

Oh, for them to walk in my shoes and be in my mind for one day!…

Thank God!…  for my wonderful husband!…

We stood our ground together!… Talked together… Wept together… and Stayed together!… which is not the norm…

“Special Kids” can be such a burden… hardship… stress factor… that many parents split up… One …usually the Mother… having to raise the child on their own…

Thank goodness for our love of each other and the love for our child…

It’s a never-ending process…

It’s definitely a day-to-day process…

You learn what works…what won’t…

You become stronger…

You become grateful…

You become a witness to others…

You realize only God can answer your questions… and be there for you in those lonely nights…

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