This post is generously submitted for the 2011 All About Autism Series ~ by Kim Lehnoff:
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.
Most of the articles and posts I read about special needs refer to young children. I thought it might be helpful to add my take on our extended visit to our little neck of the adolescent 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. Or maybe he gets arrested and put into detention.
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 when 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 know that most of the judgmental looks are based on ignorance. And I do 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!
And there is hope. There have been improvements in The Boy’s behavior, attitude and circumstances.
The Boy is a young man now. He’s about 5’10” and over 200 pounds. There are added expectations that accompany his size – sometimes he doesn’t measure up.
Then, other times, I am so proud of the way he is growing and progressing, I get teary when I see him excelling at something that had been beyond his capabilities in the past. In his new school (he started there in January of this year), he is making great strides in social skills and academics alike. He came home and told me, “Mom, everyone wants to be my friend there.”
The Boy is very interested in girls. Unfortunately, his conversational skills with the opposite sex need an awful lot of work. But I have seen some improvement. He doesn’t stare at them in a creepy way anymore. And he no longer says, “Hey, sexy!” when an attractive young woman walks toward him. But he still has quite a bit to learn in that department (as do countless NT boys and men, by the way).
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.
Kim Lehnhoff is a wife, mom to three (including her youngest son, who has been diagnosed with Bipolar Disorder and Asperger’s Syndrome), stepmom to three and grandma. She blogs as June Freaking Cleaver at The Ratio of Failures: http://ratiooffailures.blogspot.com. Kim enjoys reading, doing crossword puzzles, avoiding domestic responsibilities and writing. She is a member of the Writers’ Society of Jefferson County, and Saturday Writers, both in Missouri. One of her short stories has been published in A Shaker of Margaritas: Hot Flash Mommas, .an anthology published by Mozark Press.
The perspective of a parent with an older child challenged with an Autism Spectrum Disorder is a perspective I have not read much of. I appreciate Kim’s willingness to share her story with us…for we will be her one day…with an older child challenged with ASD. Thanks Kim.