Autism Awareness

Today marks the beginning of Autism Awareness Month, with tomorrow being World Autism Awareness Day.  Honestly, the whole thing leaves me feeling conflicted, tired, and a lot like a giant fraud.

I am conflicted because on the one hand, a whole month dedicated to awareness of something that we live as a family every day has to be good right?  If it raises more money to help my kids.  Or puts pressure on the government to provide more funding for early and appropriate therapies.  Or what if it could chip away at the gap in how people who know Maggie treat her vs the way strangers do?

Those are all good things right?

The problem is that I am exhausted.

It sounds like a giant cop-out, I know.  And maybe it is.  And then I feel guilty about that.  But then something started to happen.  I began to notice facebook status updates and blog posts from other autism parent bloggers, commenting on how they were dreading this month.  I saw talk about how we live this every day, so we are already blindingly aware.

And I felt better.

But I still feel like a fraud.  I advocate for my daughters, and I try to do everything possible to get them what they need.  But I am not writing letters to the government; I don’t go in and talk to Maggie’s class about autism; I find myself avoiding reading autism blogs; I have the whole “stack o’ guilt” reading pile beside my bed gathering dust; and we haven’t walked in a single autism walk.

It’s not for lack of wanting to do those things.  Part of it is a simple lack of time, and making of priorities: dealing with the meltdowns, juggling the therapies, planning the schedules, repairing the constant destruction of our home, keeping Maggie safe, and loving and enjoying my family all come first, with not much time leftover.  I think the rest is an act of self-preservation:  I feel like my sanity boat is barely floating, and that one more hour a week of thinking about autism is going to be the brick that sinks this ship.   It seems unfair that the ones who live with autism have to take on educating everyone else.  It’s akin to making a drowning victim carve their own lifeboat.

The other reason that I feel like a fraud is that I just don’t know what to say.  I can explain my child to another adult using all kinds of grown-up words and statistics.  But lately I have had a lot of children asking questions, and I find myself left with my mouth gaping open instead of being able to form an intelligent (or any) reply.

Possibly it is because kids ask the hard-hitting questions that adults normally keep to themselves.  We were at a park this weekend and a 3 year old kept asking his dad “Why her saying that?” about Maggie doing one of her echolalia monologues from Caillou.  I told him that she likes Caillou.  After she began making some of her louder stimming noises, the boy kept asking for her to stop.  I didn’t know what to say, and obviously correcting his grammar or calling him four-eyes wasn’t going to be the way to go.  So I just played with Maggie and ignored it all.  I keep wanting to educate the public, and these golden opportunites come along and I don’t know what to say.

Or I say something completely inappropriate like I did when Maggie had a level 17 meltdown at the grocery store last weekend and I couldn’t get her out of the store.  Apparently yelling “Enjoying the show?” at the gawking bystanders is ‘not constructive.’

Sometimes the only thing I am creating awareness of is the dangers of limiting a mother’s access to sedatives.  I wonder what colour lightbulb you use for that?

This was our first  year of wearing blue for World Autism Day 3 years ago.   Taking a picture for Autism Awareness is  easier than you would think.  They’re wearing blue.  They have their own agendas.  There.  Now you’re aware.

Comments

  1. Jewel says

    I don’t do the ‘educating’ or the walks or the support groups either. I get looked at funny by our social worker when I talk about being desperate for help and then refuse support groups. Support groups aren’t help – I need real, practical, come patch the holes in my drywall kind of help – not sit around and commiserate about how stressful it is kind of help. I know it’s stressful, I don’t need to drink tea with other moms to talk about it.

    I will say this – I think Autism Awareness does help (some) people in the stores understand what’s happening when there is a meltdown. My son is now 14, and I feel like I have seen a shift between the judgmental stares to the ‘it looks like that sucks and we don’t know how to help’ stares. Or the ‘we are consciously looking away so as not to make you feel uncomfortable’ people. And while that isn’t ideal, I am honestly not sure what I would consider the ideal reaction from strangers to a meltdown? Ideally there would be no meltdowns in public but … yeah.

    I like to think, perhaps wrongly, that the awareness education is the responsibility of organizations, doctors, professionals and such. Not us. That’s like asking the soldiers fighting in the war to also manage their own press. We are far too busy in the trenches to educate people at the same time.

    For other kids – I definitely have learned that they just need their curiosity satisfied. I have two special needs kids (one with Autism and one with a cranio-facial difference) and have learned that kids are genuinely curious, will help if they can, and (in case of the visual difference my son had) were concerned that a) my son was in pain and b) his condition might be contagious. I just give the simplest answers I ca ‘he was born like that but id doesn’t hurt him’ or ‘his brain works differently than yours and mine, and that noise makes him feel really calm.’ then the curious kids will smile and run off and play. Usually.

    I don’t read many Autism blogs either – but there is one that I bookmarked and this post is really really great for talking to older kids about Autism: http://momnos.blogspot.ca/2010/03/on-being-hair-dryer-kid-in-toaster.html

    • says

      Hi Jewel…thank you so much for your comments!! It’s so true that we need the hands-on help. Seminars make me want to cry because a) I don’t have time to go to them and b) when on earth would I apply this? We had a therapist here after school working with us so we can work with Molly, and the whole time I had to keep leaving to keep Maggie from tearing the house apart. Bring a team of therapists if you are going to bring anyone at all!!

      I have found a group of my autism ladies that I go for wine with though and that is actually really helpful. We found each other organically though and not through a support group, so the vibe is probably quite different…ive never tried the support groups.

      Thank you for the advice on the blog…it sounds like a great way of explaining it. I also really like how you explain things to other kids. I think other people’s kids make me uncomfortable at the best of times, so their tricky questions freak me out. I’m an only child who, according to my husband, was born with a briefcase in my hand…I couldn’t talk to other kids even when I was one!

      That’s interesting that the reactions to the meltdowns change as the kids get older…I am looking forward to that time. Although dealing with a meltdown from a strong 7 year old is hard enough…it must really be challenging with a 14 year old boy.

      Thank you again for commenting…I really enjoyed your reply 🙂

  2. says

    I feel guilt for not supporting these walks and talks and education opportunities as well..and we’re not full-blown Autism…PDD-NOS for us, no serious meltdowns any more, but still the quirks and habits, and some OCD things to “explain”…

    You don’t need to educate the onlookers..You need to be the great mother you are, to your kids…leave the educating to the Institutions…

    And keep enjoying your wine dates! They’re what keep you sane between the meltdowns and daily “stuff”… You’re doing great, I promise!

  3. says

    Hi Tara, what a wonderful post, so honest.I agree with what somebody said above: you are dealing with enough already, and if you don’t feel like participating, don’t. You’re not a superhero, you’re not a poster parent for autism. You’re just a mom whose children are different from other children in their very special way. It is had enough as it is, Tara! By which I want to say: “you’re amazing”.

  4. says

    Preach Girlfriend. Who needs to emphasize a whole month (if it is your whole life?!) I make this comment with semi-confidence because I am an educator and I actually know what it is and how it translates – at least to the classroom. It would be like me getting excited about a postpartum depression awareness month! Oh goody! A whole month to reminisce about a dark time in my life….no thanks!… I love the picture at the end. They are doing their own thing in their own way. Giddy up.

  5. says

    You are living this. It isn’t your job to educate the rest of us or make us more comfortable or aware. Your job is to love them and you are and should give everything to that! Well said.

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