Autism Watch: 2007

Loving your kid just comes natural, right? Wanting the best for him, doing all you can to ensure his safety and giving him all you can, within reason, for happiness? Looking forward to when they get home from school, playing with him, and just spending time with him, right? Wait, did I lose anyone on that last one?

A few days ago, I was returning at item at the store when I ran into a woman (with her child)who I’d met through a friend a while back. She has a young child who was dx’d with autism a year or two ago and my friend had tried to set us up to talk when her child was dx’d after mine, but the woman was first in denial, then was so deeply entrenched in self-pity (not about her child, but about the impact on her own life) that it never happened — her choice, not mine. I also think she had a secret feeling that I couldn’t understand her, because her life was ‘so bad,’ and mine wasn’t, though she knew very little about me. (And before you think I’m talking about someone who may just read my blog, I promise, she won’t. “That online stuff? A waste of time, I’ll talk to my doctor, thankyouverymuch.” Ooooo-kay.)

Last time I’d seen her, she was a working mom planning a vacation with her kids. She was driving a nice newish car, and looked like someone who paid a lot of attention to herself: manicured nails, modern hairstyle, non-wrinkled clothes, matching bag…not what I look like on a daily basis. 😉 This time? She was still driving a nice car, not quite as new, and the nails were still done, the hair was a different stylish cut/color, and she still looked really put together. But looks can be really deceiving, I guess. (And if a lot of people I know are any indication, you can be perfectly happy in a t-shirt and shorts with a ponytail and still be happy, so looks really don’t mean much unless you’re paid to be a model.)

First thing out of her mouth after I asked her how she was doing was a sigh. Not a good sign. Here I am trying to make a quick run to return something and replace it, and I could see a therapy session coming for someone I don’t even know very well…and here I am, a parent with my own struggles and my own issues to deal with. As much as I love to advocate for autism, educate, grow awareness and just be a listening ear, babysitter, helper, whatever, I am still a mom of a child with autism. We all deal with it in our own ways, but the fact remains, when someone drops a big problem in your lap without so much of a lead-in, I can’t help but kind of cringe. Selfish, maybe, but I think it’s more of a self-centered issue..hence, back to that “Your life can’t possibly be as <sigh> bad as mine.”  I love to help other parents, especially those with new diagnoses or other issues, but just because I’m not sighing my problems out to the first person who I speak with doesn’t mean there aren’t any. (I’ve actually considered being a paid advocate at some point, but only when my son is older. )

Now that I’ve gotten that out of the way — I bet you’re wondering what she said after the long dramatic sigh? She sighed again. Finally, after she’d impressed upon me how.truly.bad.it.all.is, she started to use words. She explained that the main reason for her sadness was that her son’s summer program was only half-day now. I patiently waited, sure there must be more, but that was it. I could understand the difficulties this would pose with her daycare, both with the cost and with the logistics, and I could sympatize. I work from home full-time because I know it would be hard to find a job that would allow the flexibility that’s necessary if a school calls or has a really bad day. But that wasn’t it. She didn’t like that he was around in the mornings later now, and therefore, she had to ‘deal with him’ before going to work. I’m not sure what look was on my face, but it must have been somehow inviting because that opened the floodgates. While she had some legit issues — we all know how difficult these kids can be, and how much time they can take — the list was, well, ridiculous. Some things she mentioned were things parents of neurotypical kids face. Others were more common among families dealing with autism, and others were singular to autism. Still, none of it prepared me for the facts of just how much she resents this child. How much she wants to leave the child with a sitter, ‘deal with the autism’ during the weekly O.T. session, but beyond that, ignore the autism and be angry about the behavior. I could say that this was because it was easier for her than facing reality, but I really think it was more of conscious decision. All in all, I got a strong feeling she really didn’t like her child, and really wasn’t interested in investing more time/effort to help him, so she was hoping someone else would.

Before I sound totally unsympathetic, I say again that I know everyone deals with an autism diagnosis in their own way. But after two years (which she emphatically reminded me) it’s time to move on. Deal with it. Face it. Step up to the plate. Be sad, be frustrated, whatever, but moping longterm isn’t fair to the child. The child deserves an engaged parent willing to do more, at any point, to help their child. It means sacrifice. It means giving up time from the manicurist if your child has a meltdown and needs mom to hold him tightly until he’s calm. It means finding a way to find family time together, whatever their type of family time may end up being — we all know it’s not always the same kind of family time other families may have. It means stop asking for someone else to fix your child, and learn to do it yourself in addition to outside help. Advocate for your child, don’t just whine. And when talking to another parent of an autistic child, recognize that it’s not a competition. We don’t have to one-up each other on who has it worse. We don’t need to compare bite marks or share only the bad things. There IS more to the child than autism.

So many of us talk about how we don’t want the label of autism to define our child. But, like the above woman, how many of us fail to follow-through? When someone asks how our child is, do we tell them how they broke our glasses in the latest meltdown, or do we share how they showed empathy successfully when their sibling’s pet died? Do we whine that we don’t have more respite or do we talk about how much fun it was when we played with bubbles outside yesterday? Do we blather on about the negativities related to our child and raising that child, or do we share the joy and happiness that we have a beautiful child?

I guess my point is that I love my son, issues and all. I look forward to time with him, and I will be sad when school starts, though I know it’s a good thing for him. I love to sit near him when his head is stuck in the Gameboy, watching his emotions and listening to his funny comments. I may wish he’d stop talking 24/7, but he talks, and for that I’m grateful. I’d much rather hear him quote an entire Pokemon DP episode frame-by-frame than the alternative. In other words, my son has good traits — wonderful characteristics — a personality that amazes me daily. I can’t let any of his autism-related behaviors overshadow that. I can’t wish time to fly by, I want to enjoy every minute…even if some of those minutes are spent stopping him from throwing something large and painful at me…because he’s my son. He’s my responsibility. When we have children, unless you have large movie-industry paychecks, we can’t special order our children. We get what we get. Some children are more challenging than others, but these are our miracles, our babies. To treat them any less is unacceptable.

And the woman I spoke with? I hope she gets some help. And I don’t mean just more respite, a larger support system (though she had a heck of a larger one than most already) or more services for her son, but therapy for herself. And maybe for her marriage, who knows what this does to them as a couple. I’ve not met her husband, maybe he’s in agreement with her? I won’t speculate, but the environment in the home as it sounds now just doesn’t sound nurturing. Even if autistic kids are literal and supposedly don’t pick up on things all the time, they are incredibly smart, and we never know what they are presuming from what goes on around them. I hope this woman stops leaning on ‘the system’ to take care of her child, and remembers she is still his mom.

And oddly enough, maybe, the child was with her during our conversation. I’m not sure how much he heard, he was playing with a handheld game, but he spoke to me, quite nicely, didn’t pester her to leave, only interrupted once to ask about buying a drink, and was quite the sweetie. Sure, we all know autistic kids don’t display behavior problems 24/7, and until we’re at home with them, all bets are off as to what mom and dad really deal with, but it was hard to reconcile the negative rant about this child when he was having such a good moment, however long it ended up lasting.

I did suggest she look online, but since she was still against that, I recommended some autism groups, some resources, and some books. I doubt she’ll follow-through, though I can hope. She seemed to know it all, and that nothing would help. (The thought of “But if something helps, what would she complain of next? went through my head.) We can’t just take our kids to their O.T. sessions, or their speech therapy, or their social-skills sessions or their behavioral sessions and then forget autism the rest of the week. It’s up to us to learn about autism. It’s like something we’d get a real education, a degree in, a career, but we learn it without the physical four walls of a school. When we start any other career, we learn a lot in a short period of time, start applying it, then continue to study it and research it. We learn about new products/tools/resources available for that career, changes in the field, and we look consistently to stay on top of it. I don’t see that any different from being the parent of an autistic child. Sure, some weeks we’re shorter on time than others, but it’s our job to stay involved, to stay on top of things in the autism community, to do whatever it takes to be the best parent for whatever kind of child we have. And to be thankful, to be grateful, that we have that child while we’re doing it.