This is an emotional post for me to write because it is close to my heart. Hook has autism and while he is high functioning, is severely disabled and it impacts our life and changes it every minute of every day. Here is a small way you can perhaps understand a slice of what we live every day.
WELCOME TO HOLLAND
byEmily 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, this will be phase one in a set of many posts, but with that background knowledge, Disney has been the ambassador to Holland for us. It has helped us enjoy magical moments and family vacations that no other venue would care or say they had time or availability.
Every time we go to Disney we bring a letter from our son's doctor stating what his diagnosed disabilities are. When we arrive, we present this letter at guest services and receive our Guest Assistance Card. In our case, this card allows us to use an alternate entrance when available to us for our entire party. Hook, due to anxiety and sensory issues has a difficult time with waiting and being surrounded by crowds, but loves rides. This allows us to enjoy rides with minimal waits and crowds. We tell him that Mickey knows that everyone is different and everyone has different needs. Mickey gives him this special pass, because he knows that Hook is special and he wants him to have the best time possible. Without this pass, there is no way we could do Disney with Hook.
We have a few times, encountered some rude people who have asked us why we got this special treatment and what we were doing. I thought about it and gave them this response, "How about, you take my son's multiple disabilities, the main one being Autism and you give that to your child, taking it away from my child and I will be happy to give you this pass and wait in the longer line to ride." I have never gotten any verbal responses back, but many ashamed looks away. No one has ever taken my offer, not that many people ask, but you always find people out there in the crowd that are rude enough that comment.
A few tips we have learned in Disney traveling with our son is to avoid the peak travel times. Bring earplugs to diminish the noise, bring sunglasses to mute the bright lights, bring an ipod for when it is all just too much. Brush regularly if on a sensory treatment plan. Be open and disclose, many cast members are well trained and know how to help and want to help.
More to come in future posts on this topic, just know that children and families with disabilities are welcome and accommodated in Disney and honestly outside of our own home, we have never felt more accepted or at home than when we are when in Disney.
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