Last week, we had Aiden's open house at pre-school. It was a great experience. We learned a lot. Aiden is in the class with kids that have Autism, have seziures, and have lots of needs. Many of our friends, seem to think he just has a speech issue. It goes beyond it, and it is hard to understand unless you live with us and see him day in and day out. We got home that evening and just shook our heads asking each other, "What is it about our brains and our DNA that didn't mesh? Why didn't we see this coming?"
Fast forward to this week. I took Elijah to his 18 month check-up. It came to the list of questions of does he do this, does he do that. The list of broad, standardized questions that make you start comparing your child to the rest... Elijah only says a few words: dog, banana, stuck, ball, read. He doesn't even address us as momma and dadda. Aiden didn't either.
You start comparing, taking notes...Then we did it again. We asked each other, " What is it about our brains and our DNA that didn't mesh? Why didn't we see this coming?"
So I did as the pediatrician recommended. I called my case worker at CDS. She said, "Oh- you really are taking that trip to Holland." She then told me about this following poem:
WELCOME TO HOLLAND
by
Emily Perl Kingsley.
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.
So, on this journey with Elijah, we will be taking a trip to Holland too! It might be a permanent trip or just a temporary trip, but we will have to not think about our DNA and think about what we can do with Elijah and how we can make the best stay in Holland for him as possible.
Are you and your family in Holland right now? Is it a permanent trip or temporary? How does this poem relate to your family?
12 comments:
Denise, while Holland isn't Italy, it is still a beautiful place. And at least you have been before and know the appropriate people to contact to make your "trip" as smooth as it can be. And at the end of the day- you are in excellent company! Life is a journey, not a destination. Be glad that you have fabulous travelling partners.
Thanks, Amy. I agree with you! It is coming to the truth even when you know it that makes the trip looks so icky at first.
Once you've learned the language, I know that you will enjoy your trip to Holland. Your kids are beautiful, happy and bright with their own unique personalities and gifts. And even though you aren't where you thought you would be on the path of parenthood, you will still raise strong, happy, capable children because that is the kind of parent you are.
Thank you, Tammy (aka Tamara!)!!!
LOL I'm in Holland and as you well know sometimes the weather is bad and it's sometimes good. Sometimes you want to be everywhere BUT Holland. But if you get stuck there just remember you didn't arrive to a place where you don't know anyone. I live here and you can always stay at my "house" if you need an ear. But I totally agree that you must learn the language because it makes things so much easier. Woodfords has a toddler and preschool class that is free and helps parents deal with children with developmental disabilities and behavior issues you may want to check into it. It's one night a week and free (in westbrook I believe.)
Lissa- I signed up for it- it starts next week. I can't wait to take it! Aiden is behaving wonderfully at school because he is getting one on one. At home- different issue. One step at a time, right?
That class I think my sister is taking too. My nephew doesn't have any obvious delays but is very agressive. Are you taking the toddler or preschool class?
My 16 year old daughter and I had been blissfully living in Italy for a long time, until we abruptly found ourselves in the midst of hectic, confusing Holland. Not that its so bad, its just so different. And definitely not the grand tour I had signed up for. I've found that the best way to get around this new area is with blind faith and alot of freely given hugs! (you'd be surprised how far they'll take you) Its not the trip I had mapped out in my mind, but there are still beautiful scenes, you just gotta stay open minded and open hearted,,, sometimes these sights are more beautiful than the road most traveled. Take the pictures to prove that you were there, and maybe we can all get the tatoo that says 'WE SURVIVED OUR KIDS"!
Lisa I do have a tattoo that says something like that. Funny huh?
I have a brother diagnosed with Aspergers at the age of three. I am 24 years older, and have a graduate degree in Psychology, so I have been an involved adult in his life as we processed what this label would mean for him. I know that it does not define him, in fact some days his behavior barely falls within the spectrum; some days it definitely does. It was an adjustment to incorporate all the possibilities that come with Aspergers into my picture of my brother, but it hasn't changed who he is, a loving, sweet, intelligent, thoughtful, creative, little boy who has stolen my heart from day one! Sometimes, the unexpected brings unanticipated joy along for the journey as well. I wish you the best as you take that journey with your kids.
Thank you Lisa! :-)
Thank you Pamela!
We don't know how long our trip will last.No one can give us any answers right now. It's so frustrating.
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