I had a conversation with the mom of a former patient the other day. After many years of evaluations, therapies, special schools, surgeries, audiology appointments, and IFSP/IEP meetings she said their life seems more "normal" now that her children are mainstreamed and function with minimal support. Talking with her really got me thinking about what changes in our field and early identification/intervention will have on how "normal" families will feel when they are faced with raising a child(ren) with special needs.
I can't remember the first time I read this passage, but it is one of my favorites.
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.
By Emily Perl Kingsley
One part that always strikes me is And you will meet a whole new group of people you would never have met. It brings to light that as a speech-language pathologist I am following my plan. I chose a major, read the books, passed the classes, graduated, went on to graduate school, read the books again, passed the classes, interviewed for jobs, then graduated. Having these people in my life was all part of my perfectly orchestrated plan. So the realization that for these families...having SLPs, OTs, PTs, Audiologists, Special Ed Teachers, Psychologists, etc., no matter how much they love and appreciate these professionals, was NEVER part of their plan or the dreams they had for their child.