May 27, 2009
Emily Perl Kingsley wrote a lovely piece about raising a child with a disability, where she compares it to being in Holland. Please check it out here.
Here's my take on our extended visit to our little neck of the woods here in Holland:
Life is an adventure; no two days are alike. The weather is very changeable - sometimes, it is more stormy and inclement inside than out; other days, the sun streaming into the windows makes us all feel sunnier. Medication usually helps - but it constantly needs adjusting as he grows. Other times, he is so out of control, that he must be admitted to the hospital for more intensive intervention and medication management.
One of the toughest things about Holland is that the foreigners (non-disabled children and adults) often don't understand that the boy has problems upon looking at him. He looks "normal", from the outset. It's only after you hang out with him a while, or happen to hear and see him in the middle of a meltdown, that you realize that something is just not right about the kid. He may be loud, he may be having a profanity-laced outburst, or he may be crying. He may have a weird look on his face, or be reacting in a dramatic fashion, or maybe he's laughing...a little too loudly. He sometimes gives unsolicited advice to parents. He insults adults. Ya just never know.
Oh, we get the looks. I see them. The disapproval stamped all over the grownups' faces - I can hear their inner voice, "If that were my kid...". Yeah, lady, I hear ya. Sometimes I'd like to crawl into one of those cartoon portable holes, he embarrasses me in public. One day in Sears, he asked a woman "how God could make someone as fat and ugly as you". Ouch. I apologize...often. He's told store clerks that I am not his mother, that I am crazy, that he's eighteen and should be able to buy a lottery ticket (I think he was 6 at the time). Children shrink from him, or stare and point, or laugh at him. He is teased and taunted.
There are no invitations to birthday parties being sent home in backpacks; in fact, there are no friends at all.
Sometimes, he really tries to be "normal" (whatever that is), and sometimes he succeeds. Some attempts at conversation are less than stellar, his behavior is difficult. It's all part of the autistic, bipolar adolescent package here.
I see the looks, I hear the whispers, I sense the judgment...and I remember each and every slight. It hurts. After the sting is gone, I pray that those folks never have to live in Holland like we do...they couldn't take it. And it's a shame, the tulips are quite breathtaking, and the windmills are out of this world!
Despite all the challenges we've faced, and those we will face in the future, I still like the kid...a lot. And I think these foreigners might too, if they gave him a chance. He's an acquired taste. I mean, not everyone likes Dutch Hete bliksem the first time they try it, either. My next post will be my review of the recipe.
Posted by Kim at 12:28 PM