Saturday, February 19, 2011

Out of Focus


Winter is still going strong here and as I look at the trees in my yard, they look brown and drab. Yet, one day as I was taking pictures the sun was starting to set. As I zoomed in on the tree with the sun setting behind it, the brown branches were alive with golden light. It was beautiful! Yet, the photo is out of focus. Beautiful, but blurry.

Sometimes when I look at Nathan's future, I feel the same discouragement and depression that the dreariness of winter brings. Yet every now and then a glimmer of light shines through which stirs up something inside of me. The big picture is blurry, yet there is something beautiful in trusting God for His plan for Nathan.

However, it is such a mixture of the two that the lines get blurred and it's hard to know what to think or believe.

A few weeks ago Nathan, Dan & I had a meeting with the agency that would be helping Nathan beyond high school. If he qualified, some of the things they would do was to help him interview for jobs, fill out applications, provide a job coach to work alongside him, and things like that.

As we sat in the meeting, the very nice lady said, "He meets the criteria for our services." The first twist of my stomach. My child is "officially" deemed disabled by the State of NY.

A couple of days later we received the papers in the mail for Nathan to sign. On the form it says his work goal is "order filler" or "stock clerk". The second twist of my stomach. This is all they believe he is capable of doing with his life based on his disabilities.

Then as we were reading the rest of the form I looked at the line where Nathan is to sign. Underneath the signature line it says, "consumer signature." I have friends who work in group homes for developmentally disabled and New York calls them consumers. The third stomach twist - my child is considered a "consumer."

The problem with being on the autism spectrum is that there is such a wide range of ability. There are those who are severe all the way up to Asperger's which is very high functioning. Yet there are similar characteristics.

I almost think it would be easier if Nathan was severe. My expectations and hopes and dreams might not be so high. He is on the higher end of the spectrum and often you would never know there is anything wrong. Yet, things don't fire right in his brain. He can't stay focused on things for long or work without frequent direction. His math, reading and writing skills are so low that he would not be able to manage jobs that required those skills.

On the other hand, he turned around and passed his Firefighter I class this past week. So my hopes start to raise. I start to think, "Maybe..." It's a fine line for me to be realistic, yet optimistic. To push him, but not beyond his abilities.

A friend shared the following article with me and it fits my thoughts so well. As a parent, you have such high expectations for your children. However, sometimes God has a different plan. It's not bad or horrible, just different. Accepting the difference is what is key.

Welcome To Holland
Emily Perl Kingsley

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.

* * *

©1987 by Emily Perl Kingsley

Right now Nathan's future is out of focus, yet I know that God does have a plan for him and that one day He will bring that plan into clear, wonderful focus.