The Fine Line Between Bullshit and Truth

I think I have an endless supply of bullshit.  I’m pretty sure this is true for everyone, but it’s definitely true for anyone who deals with chronic illness or disability.  I don’t feel like burdening everyone I know with an endless saga of woe, so I’ve gotten used to talking around it.  I tell myself that I do this as a favor to the rest of the world, but it’s really about me.  It may or may not make others uncomfortable, but it definitely makes me uncomfortable.

When our son was very young and clearly had developmental delays, my husband and I agreed that the word autism carried too much stigma; we decided it wasn’t beneficial for him to have to carry around such a weighty diagnosis.  We would simply tell people he was receiving services through the school district and leave it at that.  (The only people we spoke to about autism were my in-laws and two close friends.)  He qualified for services without an official diagnosis, and was able to attend a great special education preschool as well as half days at a regular program with an aide.

Also, we were very hopeful in the early days.  I honestly thought he was going to wake up one day completely cured.

It wasn’t until he turned five, and the school district told us he was going to be placed in a self-contained classroom, that it finally sank in.  First I tried to convince the school district that he was ready for the integrated classroom, but they weren’t buying.  At that point, it dawned on us that a diagnosis of autism probably wouldn’t be any more stigmatizing than a self-contained classroom.  We called The Cody Center and we scheduled an official screening.

Several months later, we had the diagnostics in hand.  It was then that we finally began to tell our friends and family, including my mom.  On the one hand, it was an avalanche of emotions, to finally be able to talk about it.  It was also incredibly hard, especially after so many years of keeping it bottled up.

I remember going to a wedding right after he was diagnosed.  The groom was a family friend.  At the reception, I was seated next to his sister-in-law.  I didn’t know her very well, and the conversation turned to what it usually turns to when two young mothers get seated next to each other… our children.  I was seven months pregnant with our daughter, and didn’t have tons of energy for dancing.  Instead I sat and pushed food around my plate while I talked to Robin.  I never referred to my son’s disability, and we talked about lots of regular mom stuff.

And then my husband started talking to Robin.  He started telling her about our son’s diagnostics; in fact he started talking about our son’s autism as though it were general knowledge.  She just looked at me, and her look said everything, “What the hell?”  We probably talked for two hours without me ever mentioning it.

The more I think about it, the more ridiculous it seems.  We took something that was incredibly frustrating, and we added loneliness and isolation to the mix.  We buried it, as though it were shameful to mention.  Although we are socialized to not talk too much about pain, to find other ways to deal with it, at what point does keeping it all inside just make it that much worse?

Yes, social niceties are sometimes required.  We can’t say exactly what we’re thinking every moment of the day, but at what point are we adding to the pain by attempting to bury it?

*In the spirit of this post, of telling an honest story, however unpleasant it may be, I also recently published Broken Toys.

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18 Responses to The Fine Line Between Bullshit and Truth

  1. Peaches says:

    I know The Hubs and I don’t tell everybody everything for fear of being judged. It can be freeing to talk about it though. It’s hard to strike a balance.

    • Yeah, ultimately I agree. Sometimes, I want to bury it in the yard. Other times I actually want to talk about it. And I think it’s probably confusing for my friends, as they might not know which is which at times. If that makes any sense. Always good to see you Peaches!

  2. paralaxvu says:

    You said “We took something that was incredibly frustrating…we added loneliness and isolation…we buried it,” but then you said you had talked with your friend for two hours not saying anything about your son and then your husband came up and started talking all about him. Did he bury it at other times, or were you the lone perpetrator? I ask this not to shame you but to tell you simply that I caught this and was wondering if it’s something you hadn’t completely understood. Please don’t be angry. I love your writing and your desire for truth, and I do not mean to put you down at all…Please delete this if you feel it’s inappropriate.

    • Oh, we didn’t tell people our suspicions for years, just my in-laws, my sister-in-law (who I also count as a friend), and one other friend.

      We DID have support through our son’s preschool as there were social workers we worked with on individual problem-solving techniques (potty-training and hand-over-hand room cleaning mainly). We also occasionally did parent groups, again through the school, but my husband HATED them. And we’d usually just sit there silently. We had decided not to tell friends, and we just weren’t great at talking about it with strangers.

      After we had the diagnostics in hand, we told people freely. Our friends already knew he was receiving services because he went to a special ed preschool. It was literally the autism suspicions we kept to ourselves. My husband and I had agreed not to tell people, but I broke rank and told one close friend. We never should have done that though. It was a bad call made with good intentions.

      And not a problem at all. I constantly write stuff, and then realize I need to edit later for clarity. Real life events are so much harder to edit than fiction, and I’m not particularly good at editing. My hubby is great at it, but I never showed him this.

      • paralaxvu says:

        It’s good, I think, to sometimes post without showing someone else. Your ideas first. I am in awe of you and your husband and other parents like you who shoulder a burden simply because it is NOT a burden, it is your child.

  3. It’s a tough balance, talking about something that big and that personal, without making it feel like it’s going to overwhelm you or whoever you’re talking to. I’ve done this sort of thing too. I don’t even realize it until later when someone I’ve talked to at length says “WHY DIDN’T YOU TELL ME???”

    • Yeah, I think she was a little bit insulted, but we were just getting to that point where it was finally okay to talk about it. We’d finally decided that the stigma didn’t matter, and realized that we needed to talk about it. Such an awkward balance though, when to speak and when not to…

  4. jimmydevious says:

    Yup, I hardly ever talk about my brother much, especially in blog-form. (see my previous comment on Broken Toys.)

    Though I do feel somewhat guilty about it, like almost as if I’m secretly subconsciously ashamed of him, but as I’ve gotten older, I think it’s more about the fact that…well, who ARE you going to talk to about things like this? Who can you trust?

    How can you possibly explain to some friend of a friend of yours in mid-sentence why you have to suddenly sprint over to the public TV screen in the restaurant like a bat out of hell on crack and shout to the owner for the remote or to change the channel quick quick quick because YOU KNOW it’s a the truck ad with the scorpion in it again, and you know if he sees it, he’ll lose all control…in public…. he’s deathly afraid of scorpions. Even totally unreal ones.

    How do you just casually blurt out to your mutual friends when they politely ask about your brother…your GROWN brother that, “Oh He’s fine, but I had to shake my finger at him like an old codger at our parents house the other day because while they were woking he threw all his clothes on the floor again, and toddler-flopped around on the carpet for a few minutes beating his fists and yelling that his “lil’brother was acting like a parent”, but after that, we watched a nice rerun of a hockey game and talked about funny dog videos and Gretsky stats…so yeah, he’s just great! How about you? Get that new truck yet??”

    Not everybody’s used to that sort of thing on a regular basis, so keeping it on the Q-T a little too often sometimes is a little more than understandable….uuuhhh

    Wait, did I say too much?? 😉 😛

    • Alright, you are scaring me a little. Poor John is going to have to deal with all of that someday? Actually, at our house it’s bees. He was stung when he was little, and now he’s beyond terrified of them. Even that song about the bumblebee will totally set him off. We do find that meds have helped lower his anxiety. They’re not a cure-all, of course, but based on what I just read you know how high the anxiety level is with Aspergers and high-functioning autism…

      I think part of what gets to us is that fear of the future, wondering what sort of job he’ll be able to obtain, and what sort of life he’ll have…

      I think the minute you walk into the bar, you should just ask for the remote control, a blindfold, and those earphones you wear at the gun range. If only it were that easy, right? Anyway, you can certainly say any and all of the above here, and there’s definitely no judgement. And some of it’s all too familiar…

  5. clownonfire says:

    Ok… A tad off topic… Now. has anyone ever said you looked like Lori Petty?
    Le Very Pertinent Comment Clown

  6. Hobbles says:

    I have done both talking too much and not enough. It is hard to find the balance, and also to know who, when, where whatever to talk. I do think it is very important to get stuff out, but I am horrible at choosing the right details to speak of.

    • I had noticed that you didn’t talk about it much of the time… but I’m still looking forward to reading your memoir someday!

      • Hobbles says:

        wow, that would be intense. I am actually thinking of writing a book. A sort of fiction biography about it. Of course thinking about and doing something are very different.

        • I can totally see doing that. When people go to write their autobiographies, it’s very very hard. What will “so and so” think if I write this and other sticky stuff. Sometimes it’s easier to write about stuff when it’s not quite your own, while still being difficult in its own right…

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