Autism Watch: 2007

Loving My Son with Autism

Posted on: July 31, 2008

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, 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.

5 Responses to "Loving My Son with Autism"

This is so sad – but I have seen it before. Some parents just can’t/won’t deal. I know when our son was first dx’d I hit a wall of despair. But after a couple of months of depression, I knew I needed to get help. I saw my doctor, who put my on an antidepressant/anti-anxiety medication. I have been on it since (12 years now). I have been judged by certain people for that – but I knew I needed to be able to be there for my son. He needed me to be my best self: not weighed down with despair, anger, self-pity or anxiety. Family counseling is also a must! My husband was in denial about it for years, with the accompanying resentment and anger. Family counseling and prayer saved us (and when he finally started on an antidepressant, that helped too!). This woman will be in my prayers.

Wow. First of all , let me tell you that you are a wonderful writer. That was a great post.

Second, thanks for stopping by my blog (Life, Unscripted). I’m so glad that I get the chance to introduce my little girl to the world…one person at a time.

Nobody asks for their child to be autistic. I know I didn’t. But we deal, ya know? I was in denial for a long time. But I decided that’s not what I wanted for myself or my family.

Taylor is a lovely little girl that brightens up the room when she enters. Her autism has slowed her socially and acedemically, but there is nothing out there that will slow her personality.

I hope you will stop by again!

Thanks for dropping by my post, which a poem about my son and your son and many children. After reading your post, it touched my heart, because I felt you were writing for me.

I have begun to write/blog again, after years, because I think I have has to shut down my own stuff in order to be productive for my son/family.Even though I don’t know you, it was nice to connect through words and feel like someone understood.

Blessings to you and your child….

Hi, I guess what I would like to say to you is that you don’t have to be supermom all the time. It’s ok to not be 100% enthralled with your child (autistic or NT) all the time. Maybe that woman was having a bad day, or maybe she doesn’t know many other people with autistic children and was looking for some commiseration from someone who might “know what it’s like.” I mean, it IS hard to have a child with autism, and few other people really understand how your family life is affected–even in small, stupid and annoying and seemingly selfish ways, like not being able to go the beach with a new friend and her kids because she called THE SAME DAY and this was not planned and discussed with autistic child the requisite 3 days in advance. Or maybe, she is just a whiner and doesn’t have much energy to give any type of child, let alone one with such intense needs. I do wish that everyone could learn to do what you do, but I also think it is important to acknowledge that autism moms are human, too, and those feelings are ok. Sometimes all a person needs is a “yeah, I really know what you mean. I have felt that way, too.”

And still. Here I am. Cleaning my five year olds poop off the walls and floor in the bathroom for the fifth time today. And by myself. And what kind of life does he have to look forward to? Manicures are the least of my worries. But I have to work, because it’s just me. And him. And a house I can no longer afford because I was fired for taking too much time off work to attend to my son’s needs. And for being offended that my boss called my son retarded.
I want my son to have friends. He doesn’t keep them for longer than week. I want my son to grow up to have a nice life with a job and maybe a wife and his own kids. That’s not going to happen for him. He’s not full-blown, he’s high-functioning PDD. But I’m tired. And honestly, I think I have that right. And I’m so glad for you that things are so wonderful and you’ve been able to work out some work from home arrangement. That’s really wonderful. I’m glad you have other kids that make you realize that it’s not just the fact you are a bad parent that makes your child act the way he does, because you’ve got other kids that don’t. Some of us aren’t there all the time.

I guess I wasn’t clear — I really thought I was, when I said at the top of my post that this woman is *always* like this. Not here and there, but always. Sure, we’re all tired at times, and we don’t have to be happy all the time, but again, this woman is *always* unhappy and complaining about it. And my point is the same — it’s not a healthy environment to harbor such ongoing, constant resentment towards your child who didn’t want to be this way. I also said that we all have our days. I work-from-home because I have to. I couldn’t hold a job right now unless it was extremely flexible. I’ve made sacrifices for things to be as they are now. Just because I’m not complaining every day about it doesn’t mean that things aren’t rough, but I decided a long time ago that my other kids deserve for me to not be that way on a daily basis. If you read back on my blog, you’ll see where I’ve been painfully candid about some of ‘those’ days. My son has regular childhood autism, so I know ‘those’ days well. I’m also guessing that maybe you don’t have teens or older kids? They aren’t a picnic. Trust me. Some help from them from time-to-time doesn’t negate the rest of the issues; they are still kids who need supervision and daily help. Honestly? It gets old having people assume that having older kids around somehow means life is easier. Help here and there is great, but they are still kids who take time, effort and money. People that think life’s a party when you have older kids to pitch in don’t have older kids. 😉
And I’m with you — manicures aren’t on my radar either, unless you count a $5 bottle of polish from CVS and 5 minutes sitting on the edge of my tub?

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