The Short Bus Diaries » Confessions About Life With an Autistic Son

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New Clothes, Rage and Guilt

So the weekend started out promisingly enough.  I stopped work early and went to the mall for a rare (and I mean RARE) two hour wardrobe update experience.  Not to get too far off topic, but I just need to confess that I don’t even bother shopping on sale. I get to the mall about 2-3 times a year, and usually only one of those times do I not have to keep 60% of my attention on keeping one or both kids from escaping up/down and escalator or pulling the arms off of a mannequin.  Thus, I barely look at price tags on these rare outings; I just take what fits and run.  The point of all of this is to say that I came back from the mall with a new dress, feeling utterly feminine and fashionably up-to-date, knowing that hubby and I were going out to meet another couple for dinner.  Yup. For one 7 hour period, I felt NORMAL. Just another mom buying some new clothes to make her feel pretty before meeting another fabulous couple for a night out on the town.

I think the best part of the night was when we [FINALLY] got to participate in that “kids say/do the darndest things” conversation, now that our two-year old non-autistic daughter is supplying us with all of those little stories parents toss back and forth when they get together.  That’s one of the little things that you fail to realize when your child is first diagnosed with autism or some other intellectual or physical impairment; not only do you completely start blowing off the books and helpful milestone charts your school and doctors send home with you; you also just shut the hell up when other parents start sharing this hilarious story of what their little Johnny said last night, right after he recited the alphabet in French while demonstrating a nuanced understanding of how his actions and words affect the people around him.  But last night, we finally got to enjoy that little pleasure that all those parents who went to Italy get to partake in, AND IT FELT NICE.

Fast forward to Saturday morning, when it all officially started going downhill.  That was when my son began his 36+ hour squealing (for all I know, he’s still squealing right now during his verbal behavior therapy session). These are not squeals of joy. Although my son is quite happy, so a stranger walking past us might think that these were temporary, short-lived sounds of pure happiness that are normal for a four year old.  Nope. Instead, this sound is probably the highest pitch my son is capable of screeching, and he does it repetitively. This is the kind of thing they could play in jail cells for captured terrorists in order to get them to talk.  I can hear that sound through floors, closed doors, and in even in my head as I type this. And no matter how many times I asked him to stop, I could not get more than 12 feet from him before he would make the sound again. And he wasn’t doing it to tease me or piss me off (although it did have the latter effect). He did it compulsively. Because it felt good.

And I became enraged. In between my two photography shoots, when I was able to relax and put on my professional, all-is-well-in-my-life face, I sunk back into a crazy rage.  Rage at my four year old son. Rage at my life. Rage at the people around me who could actually have pleasant weekends full of Rockwell-esque family moments. Rage against myself for not being able to control my reactions to my son’s subconscious need to stimulate himself in a way that was not harmful to anybody.

I saw at my two-year old daughter, who looked on while I screamed at my son to stop. I uttered the words “shut up” at my son and then immediately regretted the use of a phrase that we are not supposed to make acceptable to our small children. And I let my primitive, barest self present itself to my children, who did not deserve to see the sight of the person who controls their fate (til the age of 18) act so utterly bat-shit crazy. I felt terrible. I vowed to do better. I vowed to control my reactions.

After I put the kids to bed, I immediately looked up the mental health benefits offered by our insurance company.  Perhaps some professional anger management techniques were in order.  No go. $1,500 deductible before our insurance company would deign to pay 73% of each visit after another $30/deductible was paid for each visit. We’re just starting to make a dent in our autism-related debt, and I do not feel deranged enough to spend money confessing to a professional how little control I seem to have over my emotions, only for them to offer me some breathing exercises or visualization techniques that I can probably figure out myself by reading some books.

I went to bed on Saturday night with my cell phone in my hand, desperately searching for the words “anger son’s autism”, hoping that somebody had written a blog post that summarized my feelings and made me feel less alone and terrible about my parenting skills, or lack-thereof.  I found next to nothing. I did, however, stumble across a DVD about how two mother’s were trained to reduce the anger they felt about their children’s autism (ordered it). But what I didn’t find was what I desperately needed that night: a confession/blog/essay that spelled out – with total honesty – how angry a parent could feel towards their autistic child. And perhaps that’s for good reason. No one wants to admit to that on the web. Hell, the authorities might even take your children away from you for admitting to that level of rage.   But I just wanted to know that I wasn’t the only one.

What I did come across were some very lawyerly distinctions about how this or that parent isn’t angry at their children; they’re angry at autism.  I myself cannot perform brain surgery and separate my son from the autistic brain that is slowly causing me to become a terrible mother. (And yes, I am well aware of the intestinal/digestive/biomedical/physiological/etc. approaches to treating autism, but I’m pretty sure that the nerve endings that my son loves to stimulate with his screeching are located somewhere inside his head, along with the clogged neurons that prevent him from talking, so wishing for a brain transplant seems appropriate.)  In fact, I find it hard to believe that a parent can successfully and visibly separate their anger at autism versus anger at their child, without simply appearing to be furious with their own child.  And I applaud any parent who can take that anger, put it in a jar, and only let it out within the confines of a closed bathroom, bedroom or car, where their child cannot see it.

Sunday morning started out a bit more promising; however, by the time my son smeared his poop everywhere after he awoke from his nap (I was sleeping deeply in the room next door), I was back to my rage-y, bellowy, fearsome mom self.

I still have time to fix this. To be a better mom to both of my children and – at a minimum – leave my daughter with a vision of her childhood that she can look back upon as something approaching normal in a few instances.  Neither of my children deserve the picture their minds may have captured of their mother this past weekend.  My son should not wince when I come near him because I might scream right back at him the way he guilelessly squeals at me and anything else in the world (attempting to teach my son a lesson or demonstrate how annoying his squealing is to others is impossible and pointless; nothing is retained).  I just don’t know where that happy place is right now and it’s pretty damn hard to manufacture it.

I don’t do faith, small talk, or fake smiles very well – never have. But it feels like I’m going to have to figure out how to put on a show in my own home, faking it and theoretically making it. But probably mostly faking it for the sake of leaving my children with a pleasant memory of me.

LH - May 4, 2013 - 11:44 pm

I know this is an older post but I just found your blog and started at the beginning. I also read a blog “No Points for Style”. It is not an autism blog, but you will be able to identify with the Mom that writes about her mentally ill son. The story “Love with Teeth” is amazing and no holds barred honest. I hope it helps. http://www.nopointsforstyle.com/2011/01/love-with-teeth.ht

Maya - May 7, 2013 - 10:48 pm

I read Adrienne’s blog post — the link you sent me — and it all sounded so familiar. I totally agree with being brutally honest, because sometimes the truth is all I have in life. I just don’t have the energy to carefully select my words so that other people feel less awkward about my situation. Also, Adrienne and I are in an autism bloggers forum together, so it was kind of amusing that a total stranger brought me to one of her blog posts. Thank you for pointing that post out!

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