From a SpecialGlobe Family Member and Special Needs Sibling
When I was a kid, my parents took us to a large amusement park. Me, my brother, and my
little sister, Amy who has a cognitive special need. We waited in line for hours to go on what was, at the time,
the most popular theme park ride in the country. As we approached the entry a teenager moved to block our way, chewing on his lips as his eyes fixed on my younger sister. "I don't know if she'll be able to handle this," he said
to my mom.
Amy has a rare condition called Chromosomal Displacement. On the surface it looks exactly like
Downs Syndrome, but it has one very important difference; the condition is so rare that no one
has ever been able to tell us what to expect. We'd grown up taking for granted the idea that
every day for and with our sister was a precious gift, because nobody knew what the next day
It was, we would find out as life went along, the same unspoken philosophy that Amy had. A
severely limited rate of mental maturation had done nothing to similarly limit her sassiness or
her genetically inherited lust for adrenaline. So when faced with a semi-authority figure
questioning our sister's ability to "handle" a simple ride, my brother and I just stood there
"I think she'll be okay," my mom said. Amy adamantly agreed.
The teenager continued to waffle, until my mother pointed out loudly that my sister's handicap
made her short for her age, and that even so she still met the height requirement and he had no
right to keep her out. Behind us people in line started to chime in with early-nineties disapproval
"Dude, that's totally gnarly."
"NOT rad, dude, not rad."
The attendant turned beet red and reluctantly stepped aside. Amy gave him a hug as she
passed, because that's what Amy does.
She dragged us onto the same roller coaster nine more times that day.
For four of them, the same teenager let us in.
My original intention when I sat down was to write about why it's important that our kids with
special challenges be given the opportunity to try new things. But my mind keeps going back to
that poor confused park attendant, and I wonder if Amy helped to educate him a little bit that
day. So I think this piece isn't so much about how our special needs kids need us. It's a rare
piece about how much we need them.
Special Needs Travel, while sometimes admittedly challenging, can be one of the most
amazingly beautiful things a person can ever experience. Our kids see everything around them,
people included, from such a very different perspective than we do, that it's impossible to spend
time with them without experiencing at least a small shift in the way we see things ourselves.
We spend a lot of time bemoaning the fact that our special needs kids don't think like us. We
never think about the fact that it might sometimes be a good thing. Overwhelmed? Not sure
what to expect? This is where it becomes vital that we take advantage of the community of
people who understand what we're going through. If you're feeling stuck, all you have to do is
contact us and we'll help get you on your way.
We shouldn't have to teach our kids to hide who they are because we're afraid what other
people might do or say. Quite the opposite. We owe it to the world to let them see the beauty
our kids can bring them. The longer we keep them in the shadows, the longer both they and we
as their caretakers will continue to struggle. And the longer we'll be educating teenagers at
overpriced theme parks.
From Parents, Travel Writers,