Wednesday, August 10, 2011

Cautionary Tales

It’s my one year anniversary of writing for Hopeful Parents, and I wanted to write a light lovely piece for you today. I was going to tell you all about the wonderful community of Special Needs parents that came together at the BlogHer11 conference for a Special Needs Mini-Con.

Organized by Julia Roberts, a Hopeful Parents writer whose Support for Special Needs site is a marvelous resource for us, it was a wonderful afternoon of community and connection.

But instead, my head and heart are going to darker places. Because I have been hearing too many cautionary tales these days. And they're getting to me.

I have been reading blogs of parents of somewhat older kids, and they are telling tales of meltdowns gone into overdrive. I have been hearing of situations where there is true danger, where there is serious bolting, and there are knife drawers opened.

These are children who were sweet as pie until adolescent hormones began to surge through their bodies and brains and the regular, everyday haywire took on a decidedly darker tinge.  Because for some kids, when you add testosterone into the ASD brew? It goes really, really wrong.

I know of parents who have had to institutionalize their child because of the threat he posed to other children in their house. Because they could not stand making their beloved 8 year-old daughter lock herself into her room in fear every night one moment longer, even though it meant sending their beloved 11 year-old son to live apart from them, with strangers.

Jacob, at nine is 83 pounds and stands right now at 4 foot 8. He is still sweet, still the delightful autistic boy I have known and loved his whole life. But what will a few more years and a few testosterone surges have wrought? 

Will I, too, be writing posts like my friend Blue Sky, entitled I want my son back with sentences that read: "That little boy who ran up to me arms outstretched, 'huggies Mam.' Demanding, smiling. Now I get kicked."?

It's a tale I'm hearing over and over, and it's got me spooked, worried, gnawing at the future. Like all special needs parents, I harbor a deep wish that crystal balls were real and that I'd be offered a glimpse into one.

I want, no, I NEED to know that Jake will be OK, that the police won't be becoming a regular feature in our lives. Because some of THOSE stories, the ones I read about in the papers where police officers mistake the intentions or misread the movements of autistic young adults or oversize teenagers? Have bone chilling endings; are the stories that make me wake at 3 AM in sweaty panic.

Because Jacob, while making wonderful progress, with his language bursting forth in leaps and bounds, is also growing larger by the minute, and still remains quite strange.

And while it's a strangeness that is so clearly spectrummy to those of us with ASD-dar... to the general public? To the emergency responders, police officers, national guardsmen who protect our airports and have not received training in recognizing people with developmental differences? It can look like something scary. And when people who carry guns feel scared and threatened, well, bad things can and do happen.

I won’t say more, can’t think any more about this tonight. Tomorrow I will look into finding and joining (or starting) a movement to make sure that all first responders get the training they need to recognize and appropriately interact with people on the autism spectrum.

And I suggest you do the same. Because the life saved may just be your (formerly) sweet son’s.

Varda writes about "birth, death and all the messy stuff in the middle" on her blog "The Squashed Bologna: a slice of life in the sandwich generation"  She also tweets as @Squashedmom. Varda is proud to be a Hopeful Parent.


  1. I've similar worries, only here same aged youths are far more dangerous than any police could be.
    Just the other day a kid from my son's class was found to have tampered with the bicycle brakes of another kid. They are only 10 years old.

  2. A very somber post. When times are tough around here I stop and regain perspective by reminding myself that the hard times right now may very well be the good old days in a few years.

  3. Varda I'm so sorry that some of my posts are sending you to darker places. I do have a habit of using my blog as therapy, and that means that sometimes I blog about the bad stuff. But every child is different, and I still have no services for my son. They are due to start in September and believe me I will fight and fight to get him all the help that he needs - and wants himself. He knows that he needs help. When I get some breathing space I feel stronger and I KNOW that together we will sort out his issues xx

  4. Blue Sky, absolutely no need to apologize, this stuff has been on my mind anyway, and also it's not just you. I just used you as an example because you write so beautifully and I had JUST read that post (while prepping my intro to your SN Sibling Saturdays guest post) so it was fresh in my mind.
    I am so glad your son will finally be getting the services he needs and deeply mad at them for taking so @$%&#! long to get to you! xoxo

  5. 3 am is a terrible time, when all the things we do during the day to keep the demons at bay are absent. During the day, I'm damn good at staying (firmly) in the here and now, but at 3 am, all the ghosts of Carter future come to visit.
    So yeah.