By Suzanne Suzannadanna on August 08, 2008
Last week, I wrote an open letter to Michael Savage after hearing his comments about Autism. Living with an Aspie is not easy, and the frustrations came out in that entry detailing an average day.
A friend commented that I should write a book about parenting a child with Asperger's, as there are very few books detailing the experience. I thought about it and realized that Holly is right. When Gameboy was diagnosed, I found many books detailing what Asperger's IS, but not what living with it can be for everyone in the household. There is not much out there about the day to day nitty gritty of life with Aspergers.
Some days, Ed and I feel like we're sinking. It's easy to feel that you're alone in this thing, because those who are on the outside looking in have NO IDEA of what it entails. The fear in the pit of the stomach that you get when the phone rings and the caller ID shows it is his school. The fear that he might be suspended from school for an outburst, or if you're lucky, that they just ran low on the Strattera.
Or when we realize that he's 12 and still has training wheels on his bike, hasn't learned to swim and has to be told to do everything from getting dressed, to brushing his teeth, to putting the dirty dishes in the sink and even that he needs to take his medicine. That we couldn't even consider sending him to Boy Scout camp because they would be blindsided by his meltdowns and we'd have to drive eleven hours to collect him from camp when that happened.
This summer has been one of firsts: the boys have spent time at home alone and we've got family nearby to ease some of the burden. This has been both good and bad. We feel that Chef is excelling in the adventure. Meanwhile, Gameboy is stumbling.
He's been punished for breaking the rules time and time again. A basic absolute with an Aspie: if you make a rule, you have to enforce it. Fail to do so ONCE and suffer the rest of your life with the child reminding you of the one time you didn't do it. You can't change your mind once he's given a directive. Ever.
After a brief honeymoon period of staying at Mema and AJ's, he is now comfortable letting them see more of his true self. They're not enjoying the experience, and they're not getting the full tilt boogie Asperger's freak outs we do. He can hold his emotions in check somewhat at school and their house, but he lets it all hang out for us.
Jane had a situation that I think opened her eyes to why we don't get out and do much as a family, why Ed and I are always frustrated and have to plan even the simplest outing like the military plans an invasion. She thought she'd take the boys to Toys R Us so she could pick up a game system.
It was like telling the crack head that he was going to the crack house. Of course, he thought this meant his aunt was going to buy him what he wanted. When she said no, it triggered a Defcon 4 meltdown. In his black and white view of the world, this was like telling him "Yes, you're a crack head and I'm taking you to the crack house, but you're not going to have the crack. You can look, but you can't have any." We screwed up. Again. We forget that no one else knows the degree of this disorder in our son.
We didn't explain that any trip to any place that holds an item of Gameboy's obsession requires at least a 30 minute debriefing of the child before even leaving the house. Instructions on what will and will not happen, what the consequences will be, why we're going, how many stops we will make, how long it will take and that the trip is for XYZ purpose must occur. And people probably wonder why I don't want to go anywhere on my days off anymore. It's so draining and frustrating to have to spend 20 minutes telling the child we're going to the supermarket and what will occur just to go buy a friggin gallon of milk and loaf of bread. (and once he realizes that the loaf of bread is in the house, your ability to use it in the manner intended has now gone up in smoke-he'll eat it at first opportunity.)
When he was diagnosed, my siblings Legacy and Peg told me I was over reacting, that there was nothing wrong with my child. "He's so smart", as if that negated the diagnosis-that smart people aren't supposed to be mentally ill. It wasn't until the federal government decided he was eligible for Medicaid and SSDI that they conceded that there might be a problem. They only saw snippets of my son.
Once in a while, I meet another parent of a child on the spectrum and the experiences always feel like divine intervention. The other parent tends to show me a look in a mirror: relief that someone else understands and gets what your day to day life is like.
Sometimes, we have to restrain ourselves from giddiness that for a few minutes, you're in the company of someone who just GETS why you're asking "does he sleep?" "what food does your child actually eat?" "have you tried..." That light, giddy feeling of being understood? It's fleeting, and all too infrequent.
Alas, we tend to retreat back into our cocoons, afraid of getting hurt. The parents of neurotypical children think we're horrible and inept. We know they're whispering behind our backs. "God, that child is a terror-he walks all over her!" If only they knew that this is a child who is heavily medicated and this is GOOD compared to where he was even a couple of years ago.
We Aspie parents have been hurt time and time again by the comments of others who made snap judgements after a five minute observation of our lives. Hurt by daycare directors who didn't want to address our child's needs and kicked our children out. Hurt by the paraprofessionals who are charged with being an aide to our child-but don't want to learn about Asperger's. Hurt by parents in the neighborhoods who think that its funny for their kids to pick on a child who has a mental disorder and do nothing to teach their children to respect the differences. It'd be nice to say I don't care what other people think, but that is a lie that I can't bring myself to say.
I thought about Holly's comment, and realized that she's absolutely right. There isn't anything out there that paints the true picture, that gives coping strategies or finds the humor within the stress, worries and fears.
Holly's a speech pathologist in an educational setting with a perspective I respect. She works with exceptional students and their parents. I suspect she has seen first hand that the special needs family tends to withdraw onto their own life raft adrift in the ocean and sending up unseen flares.
Writing a book seemed crazy, but she had the right idea. I love to write. I dissected the concept and came up with a Suzanne Solution. Why not blog about living with Asperger's? That wouldn't seem such a daunting task, because I already have that habit. Summarizing Gameboy's day wouldn't add much to what I already do. Heck, it'll make those doctor's visits easier, because we could print out the entries for Dr. N. (or I could send her the link!)
I plan to talk to Gameboy about it in the next few days and see if he wants to participate in creating content for the blog. You never know, it might inspire an obsession besides the games. Lately, we feel so much more that we're failing miserably, but writing it all down may make it apparent that there are improvements happening. It'd be nice to be able to look back and say "Wow, look at what you do now that you didn't a week, a month, a year ago."
In a departure for me, I decided that this would be a private blog in the event that it later seems worthy of shopping to a publisher. However, I value insights and opinions. I gladly invite those whom I know (on the Internet and IRL alike) to read and comment. Just drop me a line at SuzanneSez at gmail and I'll add you to the list.
Wish me luck that what lies ahead is helpful to our family-and possibly to other parents in Aspergersville.
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