Emily Perl Kingsley is the mother of a child with Down Syndrome.
I have a child with partial blindness, intractible epilepsy, mild CP and Asperger Syndrome. But he looks normal. We get dirty looks all the time: when my kid doesn't understand personal space and violates a strangers, when we park in the handicap spots, even though he qualifies for -- and we use -- a handicap hangtag, when he throws up or urinates on himself while having a seizure. After reading "Welcome to Holland" one to many times and feeling it just didn't apply I composed this and passed it along to some other moms of kids with Hidden Disabilities, who seemed to appreciate it.
Were Not in Holland
(or What its Like to Have a Child with Multiple Hidden Disabilities)
We never planned to go to Italy. No, after years of hard work, my husband and I planned a simple little trip to
Disneyland. After all, its the American Dream, isnt it?
And we didnt end up in Holland. There was careful planning, with the knowledge that we could end up in Holland on an erratic whim of fate. But chances are wed end up just where we planned: Disneyland. Everything was going to be sunshine and fun. When our plane was landing, though, we heard, Welcome to Russia.
Well -- Russia. This was not expected, but I adapted, perhaps a bit faster than my husband. After all, Im the one with the talent for picking up new languages. Im the adventurous one. We saw St. Basils Cathedral. We toured the Hermitage in St. Petersburg and saw the lovely canals there. We were amazed at the beauty of the Peterhof fountains. Russia wasnt so bad after all.
But the longer we are here, the more we notice other things, less beautiful things. First we noticed how difficult it is to get around. Yes, I am picking up the language, but there is so much to learn, so much I still dont know. Its also very cold here with little comfort but each other at times. There are also a lot of people here, which may be why resources are so scarce. We wait in line with others for bread and meat, and although theyre friendly enough, we dont have very much in common besides our hunger. And we never realized how expensive getting on the wrong tour would be!
Its not all bad. There is beauty here. But there are so many difficulties and although the language and culture are feeling more and more familiar to us, we cant help but wonder what it would have been like to get on the right plane the one that was going to Disneyland. Because, you see, this trip is a one-way trip. We will never see Disneyland.
And heres the other thing: Most people dont realize we ended up in Russia. Oh, they know that we didnt end up in our original destination, but many think were just in Euro Disney: A little different, yes, perhaps not as sunny as California. But once you get over the language barrier, its just fine.