Also, please visit a few friends with great stories.....Jeni, along with me, will be posting and honoring autism awareness during this month. Raven has included a truly affecting story about a boy and his flute. Look for more to come.
The diagnosis of autism is life-changing. You are never the same once you are told that your child has autism. Some are devoted to unlocking the mystery, to beating down walls and finding the child inside. Others simply accept, but still work just as hard to make connections. Parents experience grieving-it takes time to accept that your child is different. It takes time to accept that life will be more challenging. And it takes some time to realize that life is just as rewarding as when they were born.
When I was struggling to find my acceptance with Connor's diagnosis, I found this brilliant writing on special needs children. It is not just relevant to autism, but it gave me such perspective. I even remember including it in one of my family emails. And as I reread it this evening, I am in tears while I type. Because harbored deep inside, I still have some grieving left to do.
Honestly- I don't know the proper etiquette of crediting other people on blogs-but it is copyrighted and Emily Perl Kingsley, where ever you may be-thank you for this.
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.
10 comments:
My beloved aunt (who will be 91 this month) had that piece for many years and had me read it. Her only child, who turned 51 in February, has many issues -cerebral palsy, physically and mentally challenged, and my aunt always said this really expressed exactly how she felt about her daughter. It's such a beautiful piece and so true -don't spend your life mourning what might have been when you can be celebrating what is and it is every bit as wonderful, exciting and so special as what you may think the other would have been. Just presents a different type of scenery along the way.
I finally got my post up - linked it to yours too, or at least I think I did. Anyway, my first Autism Awareness post is done. Now to figure out #2 and all the rest to come, huh?
that's a beautiful piece. thanks for sharing it and for sharing your own experiences and feelings so beautifully.
When and if I ever grow up Linda - I'd like to be just like you.
Wow, that is a great article!!
Big cyber hugs to you, Linda. Hang in there.
p.s. Some day we'll meet for margaritas and laughs!! ;-)
Snoopmurph: Autism Speaks is doing such important work. They have $97 million in donated media and raised $100 million and Qatar seems to have the labs. This is a very aggressive organization. Insurance companies will be forced to cover Autism. I will e-mail together a group of you on my Blogroll this morning to get you girls networking. Hope it is helpful. lol! :)
Snoopmurph: What a beautiful and heartwarming post. You heart is so full of love. Connor is so fortunate to have all your love and support.
As always, Linda, a beautiful post. That really is a wonderful article. It speaks a great truth about life in general, really. We can spend our lives mourning what we didn't get, where we didn't go, what we didn't do - and miss the beauty of where and who we are.
You are right though, to honor the place in you that mourns as well.
Thank you for inviting the rest of us to spend some time in Holland with you and for showing us the tulips and windmills and all the unique beauties that we might otherwise have missed what with being so focussed on just seeing Italy. I'm looking forward to the journey this month.
I will indeed make a post soon to call attention to autism awareness this month, and link them to your April 1 post!
A powerful post and thanks so much for sharing. I came here via Raven's blog.
Children with autism can teach us so much if we are only willing to learn. My grandson has Asperger's Syndrome and he has taught me alot in his twelve years of life. I see the world differently.
Would I have it any other way? Most certainly not. We were bewildered when we first learned Brandon had Asperger's, but we have learned so much about the subject. The first three years after the diagnosis, we researched, read and struggled, but once we understood Asperger's more, we were able to help him to grow and change. He is doing very well coping with life at this point, but still has a lot to achieve.
I hope you have a few minutes to stop by my blog and read my last two posts. One is on autism and the other is about Brandon's Asperger.
Enjoyed my visit.
Blessings,
Mary
Lovely post.
Beautiful post. That story rings so true for just about everything.
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