Why Autism SuperMoms* Make Me Feel SuperBad
March 28, 2016
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Now Reading: Why Autism SuperMoms* Make Me Feel SuperBad
March 28, 2016
(originally written & published on March 28, 2016)
I’ve been hearing about autism super moms lately.
Moms who single-handedly thru hard work and determination dragged their autistic kid from point A to point B
Whether that be from nonverbal to verbal
Or from low functioning to high functioning
Or from a special class to a mainstream class.
Or from high functioning to declassified.
These moms are out there. And they feel proud of their accomplishments, as they should be!
And some of them write books about their kids, as they should!
And go on the public speaking circuit, as they should!.
And they inspire many young autism parents, as they should!
However, for me, for a dad of a 12 year old still severe, still non verbal, still in the all autism classroom son, these super moms sometimes make me feel like crap.
They make me feel like I didn’t do enough, that I’m not doing enough.
And I know I’m not the only one that feels this way.
He’s a couple of examples from the recent past.
I went out to lunch with an old friend from HS who I don’t get to see very often. He says that he says that he reads my blog often.
And his sister has a daughter with autism named Beth and he was saying things like “My sister is amazing with her. She pushed her. When Beth was younger she couldn’t talk and she would hit herself. But because of of my sister’s hard work and working with her and advocating for her she’s now 9 years old and talking and in a regular classroom.”
And I’m sitting there thinking “why is he telling me this? Doesn’t he know it’s making me feel like crap?”
Why does it make me feel like crap you ask?
It’s not because this kid progressed so much. I’m thrilled for his niece and their family!
It makes me feel like crap because it makes it seem like without the hard work of this mom this kid would’ve ended up just like mine.
So maybe we didn’t do enough. Maybe if we pushed our son harder when he was younger or advocated for him better to get that 5th speech session per week or that extra hour of ABA per week he’d be so much better off right now.
Now if my friend said, “yeah she really responded well to ABA.” Or “she went on the GFCF diet and it made a huge difference.” I would be fine with that.
Jealous maybe, because we tried ABA & the diet and they didn’t work for my kid…but I’d be fine with it…I wouldn’t feel like crap.
But the way it’s presented as this super mom single handedly thru determination and hard work dragging her kid from severe autism to a mainstream classroom that makes me feel like crap.
I did a speaking engagement at an autism conference a couple weeks back and Temple Grandin was the main speaker. Temple Grandin is amazing. However a big part of her story is that her mom saved her.
And for the 1950s it is safe to say that her mom did save her. If it wasn’t for her mom Temple would’ve been institutionalized. So you could say that Temple’s mom was a true autism super mom who thru sheer determination brought out the best in her autistic kid.
And at that event I was speaking at with Temple, she was telling stories about her mom forcing her to do things she didn’t want to do to strengthen her.
“My mom told me I could spend a week at my aunts farm or the whole summer at my aunts farm. Not going was not an option. The idea of not going was never presented to me.”
And I’m sitting there blown away by her speech, while at the same time thinking “I wish my kid had the reasoning skills and the perceptive language to understand a choice like that.”
And then I got up and did my speech and started it with something to the effect of “Temple Grandin is amazing. She is the shining example of what we aspire all of our autistic kids to grow up to be. Self sufficient autistic adults. However, the harsh reality is that no matter what we do all of our kids won’t grow up to be Temple Grandin. I’m here today to talk about what life is like with a kid on the opposite end of the spectrum.”
And I had several moms come up to me afterward and say “Temple speech was inspiring but it didn’t apply to my kid. Your speech was just what I needed. In my autism world I’m not worried about the types of issues that Temple talked about. Like forcing my kid to play outside vs staying inside playing video games all day. That concept isn’t even on my radar. I’m just trying to make it thru each day without my kid trying to injure himself or trying to potty train a 7 year old.”
I will be speaking at an autism conference soon and there are two keynote speakers. The first is a high functioning autistic adult who I’ve l seen speak before and the second is a mom who wrote a book about the way she brought her asd kid from point a to point b. Her book is described as “the powerful story of one mother’s love and her stubborn refusal to give up on her child.”
And I don’t want to mention their names because they’re both great speakers and they both have amazing things to say so this post isn’t about bashing them.
However if I’m in the audience and I’ve got a kid older than, I don’t know lets say 9 years old, and my kid is still nonverbal, still banging his head against the wall, still not potty trained and I’ve tried lots of stuff with him and didn’t give up on him, will these speeches inspire me or make me feel like crap?
I’m not saying these people shouldn’t be out there telling their stories. There stories are full of hope and possibility.
I don’t know what I’m saying exactly.I just want it to be known that it is possible for a parent to be a super mom or a super dad and be everything and do everything for their autistic kid and yet the autistic kid doesn’t make much progress and is still nonverbal.
That’s why I think my blog has been so successful and why I’m starting to book a lot of speaking engagements. I tell a story of parents who tried lots of stuff and it didn’t make things much better. And I think there needs to be more me’s out there.
More people like me telling their stories of what life is like when you feel like you are an autism super mom or super dad, an autism warrior, and yet despite all your best efforts and your all your super heroic hard work, your kid is still severely autistic, non-verbal.
Despite all your tenaciousness and your “stubborn refusal” not to give up you’re still not able to able to bring up your kid’s functioning level from point A to point B.
Can we all admit that not every kid with autism has the potential to be Temple Grandin? Not every kid with autism has unlimited potential? That doesn’t mean I’ve given up on him. That doesn’t mean we are not trying new things all the time. We are trying a new teaching protocol right now. But maybe all my heroic super dad work got my kid as far as he can get.
I say in my presentations that I think that the autism miracle stories (like Temple and the supermom author) are rare, but they don’t seem rare because many times that’s all we read/hear/see about autism. Why? Because that’s how the Internet works.
So, I guess maybe I’d be totally ok with all these autism super moms and all these autism miracle stories if they all came with a disclaimer. The same disclaimer they put in tiny print on late night infomercial diet and acne medicine commercials.
*RESULTS NOT TYPICAL
I think I’m going to end it there. And as I’m re-reading this post before I hit publish and i see all those question marks in it, I fear that this post is going to come off that I’m angry. And that is not the intent here at all. My intent here is to make all the parents of kids like mine feel ok… to make sure that they realize that if you are doing all you can for your kid and your kid is still on the lower end of the spectrum, that’s not your fault.Maybe the Temple Grandin’s of the world and the Carly Fleischmann’s of the world and the Ido Kedar’s of the world are the exceptions to the rule… maybe their results are not typical and your kid’s slow or no progress is typical..
Maybe it just is what it is…
Written byFrank Campagna
I’m a 48 year old neurotypical dad with a 14 year old son with severe, non-verbal autism & epilepsy. I created this blog to rant about autism & epilepsy while celebrating my son who I affectionately call “the king” :-).