Hello, my friends,
Today's post is a "non" stamping post. I actually wanted to blog today for a very personal reason. I wanted to re-post something I posted awhile ago. First, though, let me just say that there are certain days in your life that you remember exactaly where you were....sometimes even what you were wearing. For example...most people will tell you that they remember exactly where they were the day JFK (or Reagan - for you younger whippersnappers) were shot....or maybe the day the "Challenger" space shuttle blew up at throttle up... or maybe on 9-11. The days that we were told both Linz and Zach are autistic are exactly like those days for me. I remember where I was sitting....I remember the rooms....I remember it all. I guess it's just the way we're wired.
I have a close friend who has just been sitting in the same type of meeting and my friend is feeling all those things I remember....the disbelief....the shock....the pain....the confusion....and the unbelievable sadness. What I didn't know on either of those days as I sat there was that while autism isn't the "fixable" answer to our questions and concerns...it wasn't the end of the story...."Game Over" diagnosis either. It took a long time to pick myself back up and come up with a "new" game plan and a "new" normal (whatever that is....) but it's an adventure and we're still surviving and most days we do it pretty well I think
I will tell you that you don't just get the diagnosis....go through the mourning process....dust yourself off....and get on with life. It will take you by surprise when you least expect it and you will mourn all over again. You know what? That's okay. It truly is. I spend a lot of time (wasted time) blaming myself (don't ask me why...I just do...) and that's just not productive. I talk a good game but I'm not saying I'm always the best at following my own advice.
I was given the following poem in those early days and I had a good cry....mostly because reading it was really an "Aha" moment for me. It's exactly how I felt and it creates a picture of those feelings and will hopefully let my friend know that they are not alone and mostly that there IS hope. Lots of hope.
My main advice is....NEVER give up...NEVER take a diagnosis at face value...and ALWAYS go with your gut. YOU know your child better than anyone. Trust that.
Welcome to a whole new world....Welcome to a new "normal".....
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.
Blessings beyond measure to you, my friends,