I can remember the moment very vividly.  The year was 1987.  I was sitting at the kitchen table and Dad was on the telephone.  I was almost eight years old, Ricky was four.  At first I wasn’t really paying attention. Adult conversations were certainly something I could have cared less about at that age. The sense of urgency in Dad’s voice is what caught me by surprise.

“Handicapped? How can this be? What does this mean for Ricky?”

I sat there stunned. “Certainly Ricky is not handicapped. He isn’t in a wheelchair. He can walk,” I thought to myself. Sure, Ricky refused to eat solid foods, loved to jump up and down, up and down, up and down and he still was not talking at the age of four. But handicapped people are in wheelchairs. I was so confused and by the look on Dad’s face, so was he.

“Dad, why are you talking about Ricky being handicapped? He can walk. Tell that person they are wrong.”

Dad walked to his room in silence. I quickly went to find my sweet brother to prove to this mysterious person on the phone that my brother was NOT handicapped. As usual, Ricky greeted me with a smile that could melt the heart of the coldest, cruelest person on earth. You see, Ricky’s energy was, is, and always will be infectious. He lights up any room he walks into, charms the socks off of any woman (and most men) he meets, and is the most kind, forgiving, loving person I’ve ever met. He’s not perfect, but he’s amazing.

How can this person be “handicapped”? It took me a few years to realize that the term “handicapped” isn’t acceptable and but being differently abled isn’t a bad thing. It’s just different.

My family didn’t come to that realization immediately. There are stages of acceptance in learning a child or sibling has special needs and my family certainly had to work through them.

Below is from: http://www.ldonline.org/article/5937/

Stage one:

Some parents/families may be shocked, may cry or become dejected. Sometimes parents/families may express their feelings through physical outbursts or, occasionally, inappropriate laughter.

Dad’s initial silence and resistance to provide information was Stage one.

Stage two:

Some parents/families may deny their child’s disability or try to avoid that reality in some other way. Some parents/families will search for or try to propose various actions in an attempt to change the reality. Some may “shop for a cure” or try to bargain for a different reality.

Collectively as a family, we were in denial. No way was a Wosmansky disabled! “We’ll show them!” we all thought. Luckily we didn’t stay in this stage for long. Early intervention is key when working with children with disabilities. It is crucial to begin steps to help the child as opposed to finding ways to fix them.

Stage three:

At this stage, parents/families may feel anger. They may demonstrate their anger outwardly, in the form of rage, or become withdrawn and passive from intense feelings of guilt. Some families will try to ‘point the finger’ or blame others.

I remember a period of time when we did not go out in public. We became very withdrawn. It just seemed easier to hide from the issue rather than dealing with it. There were other times when my parents would blame each other. This benefits no one as working together is the only option when supporting a child with special needs.

Stage four:

Parents/families become resigned to the fact that their child has a disability. Feelings of shame, guilt, hopelessness, and anxiety stemming from a new overwhelming burden of responsibility can become intense.

As a young child, I felt an intense guilt when I would run out and play with my friends, knowing that my brother did not have the same opportunities as me. Dad felt the same way but eventually we were able to allow ourselves to enjoy our lives guilt free. It took a while to understand that although Ricky was not doing the same things as us, he was still very much enjoying his life.

Stage five:

This is the stage of acceptance, meaning parents/families have achieved an unconditional positive regard for the child. Reaching this stage is highly correlated with the school inviting parents to become team members in a program with caring professionals that is designed to meet all of the child’s needs.

I’ll never forget Dad showing me Ricky’s first Individualized Education Plan or, IEP. I didn’t really understand at the time, but now that I’m an adult AND a special educator, I understand the importance of the document. A team of teachers and specialists all coming together to facilitate growth and success for my little brother: AMAZING. My brother made tremendous gains because of the dedication of his teachers, therapists but most importantly, Dad and the family.

Stage six:

Parents/families are able to put their lives back together and enjoy living, imagine a future, and talk of their child free of undue emotion. They can discuss and participate in designing or providing instruction objectively.

My brother is now 28 years old. He lives in a home with two other young adults where he is responsible for his own chores and up-keep of the house. He attends an adult education program during the day where he volunteers, goes on community outings, and warms the hearts of all he comes in contact with.

 

 

It hasn’t been an easy journey.  We have all made sacrifices to ensure Ricky was as well taken care of as possible. Having a brother with significant disabilities isn’t something we expected or wished for. But, I would not have Ricky any other way. He’s taught me how to forgive, how to love unconditionally, and he taught me that what I needed to do with my life was to teach.

To help families understand the stages of acceptance, I often direct them to the story below written by Emily Perl Kingsley called, “Welcome to Holland”. Enjoy.

WELCOME TO HOLLAND

By: Emily Perl Kingsley.

C 1987 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.

 

For more information, please visit: www.ldonline.org