The calls used to come at least once every six weeks: “A friend of mine gave me your number. My son/daughter has just been diagnosed with autism/Asperger’s Syndrome and I don’t know what to do. Where do I begin?”
As the parent of two children "on the spectrum," I know how scary it is for a parent to hear that diagnosis. When my older son was evaluated in 1998, there were only two books at the Los Angeles library about children with autism that were written in language the average parent could understand. At that time, the disorder was just seeing an increase to 1 in every 500 children, alarming medical professionals and researchers who had long regarded autism as a rarity. The one plus side of so many cases of ASDs being diagnosed today (approximately 1 in 150) is that there are now a variety of publications and resources available.
Here is a sample of the books and websites I have found most helpful. You may want to check the books out from your local library system or preview them on Amazon.com before you buy:
Books
The Complete Guide to Asperger's Syndrome by Tony Attwood
Dr. Attwood is the physician in England who first brought worldwide attention to the growing number of children with Asperger's. This guide, written in 2006, has the latest information but may be skewed to a British audience. Still, lots of good stuff for the newly diagnosed. Also check out The OASIS Guide to Asperger Syndrome: Completely Revised and Updated: Advice, Support, Insight, and Inspiration by Patricia Romanowski Bashe, Barbara L. Kirby, Simon Baron-Cohen (yes, that's Borat's brother) and Tony Attwood.
Hitchhiking Through Asperger Syndrome by Lise Pyles and Tony Attwood
Great book, written from a parent's perspective.
Asperger Syndrome and Adolescence: Helping Preteens & Teens Get Ready for the Real World by Teresa Bolick
Good, basic information for parents.
Freaks, Geeks & Asperger Syndrome: A User Guide to Adolescence by Luke Jackson
Fantastic book, written by a young teenager with Asperger's. I used this one to help explain to my older son what he has and that he is not alone.
Web Sites
Just as there are now more resources overall for kids with autism/Asperger's , there has been a similar explosion in the number of scary or questionable web sites offering advice and "cures" for autism. Here are a few of the most well-established sites to help you begin your research on solid footing:
Autism Society of America (the oldest autism org, founded by parents)
MAAP Services for Autism and Asperger Syndrome (a nonprofit organization aimed at helping children with Asperger's and High Functioning Autism)
Your Little Professor (weak name, but good information)
Autism and Asperger's Syndrome (a site run by the University of Southern California; lots of good links)
Finally, there's an article I wrote some years ago about the emotional side of being the parent of a child on the autism spectrum, when I edited a special issue of Olam magazine.
Diagnosing Asperger's is just the first step in a long journey. Please feel free to leave a response here if you’d like more information, or have a resource to share.
Saturday, December 29, 2007
Sunday, July 8, 2007
The Hardest Night of the Week
I hate Friday night.
I know — technically, tonight is Sunday, not Friday. But it might as well be what I’ve come to think of as the end of the week, because it’s the night I have to say goodbye to my boys.
Of all the things you don’t think about when you’re getting a divorce, having to separate from one’s children is the worst one. While I realize this might not be the case for everyone — sadly, not all parents are emotionally attached to their kids — for me and countless others it is the bittersweet trade-off for an otherwise better life.
Some of my friends think I’m nuts — they say they would love a “vacation” from their children, time to spend time with their spouse without having to worry about a baby sitter, time to sleep in on a weekend without little people coming in to wake you up at 5:30 a.m. But the word vacation implies a choice: you plan a vacation, and what makes it special is that it surfaces occasionally, usually just in time before you crack from the pressures of daily life.
This is not a vacation. This is an enforced separation, and it is as painful to me as I imagine living without the children during the week is to my ex-spouse. I cannot even comprehend how he does it, week to week, especially during the school year when he may go without seeing them for days at a time. (Of course, his decision to move 35 miles away to live with his girlfriend might indicate it is not as big a problem as might be thought — but that’s another story.)
Tonight is even tougher than the average night, because the kids left for their annual camping trip with dad. That means at least three days when I won’t hear from them at all. I can hardly breathe when I think about it.
Granted, it isn’t always easy dealing with two boys, especially my two. My older one, the one who’s a little more clearly AS, spends most of his time talking about his two great loves: “Garfield” and “Calvin and Hobbes.” Unlike most of the AS kids about whom I’ve read, his interests are not terribly odd — no train schedules, no dinosaurs, just cartoons — but the ones he has chosen lately are off the radar of kids his age. (It was both a blessing and a curse several years ago when his obsessions was for SpongeBob Squarepants — all the kids were into it, so he came off as a little intense rather than strange.) Believe me — I mean that kindly; as a child I myself had all sorts of off-beat interests. However, it does make it tough to deal with a kid who wants to talk about nothing but a cartoon cat all day long.
Then there’s my little one, who I long ago nicknamed Tigger for his tendency to bounce (and bump and touch and jostle and squeeze and pinch — the child’s need for tactile input is never ending). Put the two together, and it’s me acting as referee for about 7/12 hours a day.
Still…it’s lonely without them. And for all the fuss, for all the singular desire to just be alone without someone pounding on the bathroom door (what is it about kids and not allowing Mom to use the bathroom?), for all the days when it takes 2.5 times the normal amount of time to get anything done, I cannot bear the thought of so many days without their sunny smiles, without their hugs, without their voices calling me “Mom.”
It’s just one of those things you don’t think about in the mad dash to end a marriage. It’s the “ping” in your heart, hearing the door slam on the car that takes them away, often eagerly, as they zoom off with parent who provides all the fun and games. And I don’t think it’s ever going to go away.
Maybe that’s a good thing.
I know — technically, tonight is Sunday, not Friday. But it might as well be what I’ve come to think of as the end of the week, because it’s the night I have to say goodbye to my boys.
Of all the things you don’t think about when you’re getting a divorce, having to separate from one’s children is the worst one. While I realize this might not be the case for everyone — sadly, not all parents are emotionally attached to their kids — for me and countless others it is the bittersweet trade-off for an otherwise better life.
Some of my friends think I’m nuts — they say they would love a “vacation” from their children, time to spend time with their spouse without having to worry about a baby sitter, time to sleep in on a weekend without little people coming in to wake you up at 5:30 a.m. But the word vacation implies a choice: you plan a vacation, and what makes it special is that it surfaces occasionally, usually just in time before you crack from the pressures of daily life.
This is not a vacation. This is an enforced separation, and it is as painful to me as I imagine living without the children during the week is to my ex-spouse. I cannot even comprehend how he does it, week to week, especially during the school year when he may go without seeing them for days at a time. (Of course, his decision to move 35 miles away to live with his girlfriend might indicate it is not as big a problem as might be thought — but that’s another story.)
Tonight is even tougher than the average night, because the kids left for their annual camping trip with dad. That means at least three days when I won’t hear from them at all. I can hardly breathe when I think about it.
Granted, it isn’t always easy dealing with two boys, especially my two. My older one, the one who’s a little more clearly AS, spends most of his time talking about his two great loves: “Garfield” and “Calvin and Hobbes.” Unlike most of the AS kids about whom I’ve read, his interests are not terribly odd — no train schedules, no dinosaurs, just cartoons — but the ones he has chosen lately are off the radar of kids his age. (It was both a blessing and a curse several years ago when his obsessions was for SpongeBob Squarepants — all the kids were into it, so he came off as a little intense rather than strange.) Believe me — I mean that kindly; as a child I myself had all sorts of off-beat interests. However, it does make it tough to deal with a kid who wants to talk about nothing but a cartoon cat all day long.
Then there’s my little one, who I long ago nicknamed Tigger for his tendency to bounce (and bump and touch and jostle and squeeze and pinch — the child’s need for tactile input is never ending). Put the two together, and it’s me acting as referee for about 7/12 hours a day.
Still…it’s lonely without them. And for all the fuss, for all the singular desire to just be alone without someone pounding on the bathroom door (what is it about kids and not allowing Mom to use the bathroom?), for all the days when it takes 2.5 times the normal amount of time to get anything done, I cannot bear the thought of so many days without their sunny smiles, without their hugs, without their voices calling me “Mom.”
It’s just one of those things you don’t think about in the mad dash to end a marriage. It’s the “ping” in your heart, hearing the door slam on the car that takes them away, often eagerly, as they zoom off with parent who provides all the fun and games. And I don’t think it’s ever going to go away.
Maybe that’s a good thing.
Saturday, July 7, 2007
Greetings!
Welcome to my blog. I started it because I needed a space to respond to this Information Age, a place where I can pour out all the smart aleck and snarky things I could never get away with in front of a class or around other not-so-mad moms and dads. The absurdity of being a parent today, coupled with our current society's education paradox (i.e. wanting the best education for our children but not willing to treat teachers like the professionals they are) provide topics too tempting to ignore. (Plus there's that presidential race coming up...hello, Class of 2008!)
So, pull up a chair and make yourself comfortable. This Mad Mom's got a few stories to tell.
So, pull up a chair and make yourself comfortable. This Mad Mom's got a few stories to tell.
Subscribe to:
Posts (Atom)