The Bears in the Park: Anxiety and the Autism Parent

????????????????????“Worry is the thief of joy.” – Unknown

I read with interest the other day a post by psychiatrist Dr. Gail Saltz, “This Is You on Stress.”  Being stressed out all the time, I’m becoming increasingly aware of its effects.  Dr. Saltz says stress is an evolutionary thing, a fight or flight response triggered by a perceived danger.  In dangerous situations – such as the possibility of encountering bears in a park- it keeps us aware and can save our lives.  The problem, she says, is when you are removed from the danger but the fight or flight instinct is still going.  That kind of anxiety is harmful.  She goes on to suggest some strategies for breaking the cycle of unhelpful stress when danger isn’t nearby. I thought about that for a while and how to use those strategies to stop stressing and calm down.   I thought about those bears in the park.

And that’s when I realized.  It’s no wonder parents of severely autistic children are increasingly being diagnosed with anxiety disorders, PTSD, depression, etc.  It’s not because of their children.  No, our children give us just as much joy as any others.  It’s because there is rarely a time when you aren’t in the park looking around for all those bears.

What and who are these bears?  There are many.  Elopement, bullying, failure of school districts to provide an appropriate IEP, medical and dental appointments, unfamiliar situations, loud noises, lack of autism awareness, lack of autism acceptance, loved ones who don’t get it, judgmental stares and comments from strangers, inaccessibility from grocery store carts to Disney World, respite care, insurance battles, lack of appropriate housing for autistic adults –and on and on.

So we rarely leave that park.   And we stand – fight or flight response at the ready – clutching the hands of our children all the time.  While trying to live our lives in all the necessary ways.  Meeting the needs of other children.  Nurturing our marriages.  Paying bills.  Working.  Caring for older family members.  Taking care of ourselves – which, like this list, always comes last.  But we do all of these things while anxiously looking around, listening, and facing those bears when we encounter them.

I’d like to follow Dr. Saltz’s suggestions.  I’d like to try meditation, thinking myself calm, and reminding myself that I’m out the situation.  Except I’m not.  I don’t have the luxury of letting down my guard.  Because if I do, the bears are still there.  My child will not receive an appropriate education.  He may be traumatized by people not trained to work with autistic children.  Someone might forget to latch a door.  A door within minutes of busy intersections and bodies of water.  He might be treated as a disorder and not a child.  No, the only time I can relax is when he is safe in bed and the house alarm engaged.  Even then fears of my own mortality (who will take care of him?), his education, his health (feeding issues), and his future haunt me in those witching hours of worry.

The problem is these fears aren’t unjustified.  My anxiety isn’t occurring in the absence of danger.  These dangers are real.  Because this world is not ready to welcome my son.  A son who will one day outlive me.  A son whom I fear will not – if needed – be cared for by those with good hearts and a desire to allow him as much independence as he is able.  A child whom – in the wee hours of the night – I lie awake envisioning as an old man.  An old man – perhaps with no family of his own – lying in a bed and taking his last breaths with no one to hold his hand.

Yes, those bears are all around me.

I don’t want stress to win, but it’s ever present.  It steals from me sleep, laughter, and peace.  Joy?  It’s fleeting.  Found in bits and snatches – and always bestowed to me by my children.  Yes, it’s there.  But it’s often stolen by the thieves of anxiety and fear.

And in my darkest moments, I fear that lack of joy is turning me into a bear.  Someone who sometimes fails to appreciate the little things.  Someone who will fail to pass on joy to my children – who deserve that in their mother.

Some talk about a national autism plan.  Do we need one?  Yes.  Should it resemble any of the depressing and misleading suggestions we’ve heard so far?   No.  But we must begin to address the needs of children, adults, and families like mine.  We must begin to teach our citizens, our schools, our medical personnel, and our law enforcement how to interact with autistic persons.  We must learn new ways to teach, engage, employ, and live amongst those who experience the world differently.  And we must begin to plan for the futures of the most disabled on the spectrum.

Until then, I remain perpetually on watch for bears.

If you liked this post, you might also enjoy “It’s Not Personal: A Special Needs Parent’s Apology to Everyone She’s Going to Upset.”

 

 

20 thoughts on “The Bears in the Park: Anxiety and the Autism Parent

      • Thank you for writing this. It means a lot to me to read a post about what it’s like to be an autism parent, and why it’s hard, that doesn’t blame their child or dehumanize them. I don’t think I’d have the patience, courage, ingenuity, and humor to fight for an autistic child and protect them, as you do. I love your bear in the park analogy, too. I’ve also wondered, how do you relax and take care of yourself when there really *are* bears and being anxious *is* what’s realistic? Just know that you’re not fighting these bears alone.
        ~mosaicofminds

  1. Thank You for this and all your well thought out and written posts. You are not trying to be PC, but real. My child is not autistic but does have special needs. With Selective Mutism (a communication anxiety disorder), she only speaks to her immediate family. Although she is expected to be able to overcome her speaking issues, I fear for her future. Who’s going to take care of her when I’m gone?!! (NOT when dad is gone, when I’M gone!) Dad loves her but doesn’t get it. So how do I trust anyone else with her care!?! Thank You for voicing so eloquently what I fear and I’m sure other parents feel as well.

  2. Pingback: A “Must Share” Moment | An Autism Diary

  3. Thank you for this post, it cover an aspect of parenting an autistic child that is so important, yet is hard to talk about. We do need to give each other support and encouragement so I will post a link to this on our website here in South Africa.

  4. This is so true – the feeling of anxiety lifting when my son’s eyes finally close in sleep is the most amazing feeling in the world, knowing he is safe for a few hours from all those bears!

  5. Pingback: Autism News, 2014/05/08 | Ada Hoffmann

  6. The Sensory Spectrum is hosting a special blog hop of posts from bloggers in June and we’d love to have you participate! Just imagine a list of bloggers sharing their stories about what it’s like to have sensory kiddos! Read more here: http://www.thesensoryspectrum.com/sensory-bloggers-blog-hop-information/

    Joining in on this blog hop will undoubtedly get your blog more exposure as people will hop from one blog to the next to read the stories. I will also be tweeting everyone’s stories during the month and highlighting some on my Facebook page.

    I hope you’ll join us!
    Jennifer @ The Sensory Spectrum
    (and you can find me @ The Jenny Evolution, too!)

  7. You think all those bears you listed are stressful for parents? You should try being the autistic person some time. There are way more bears for us than there are for you. Some of them look like kittens, but they turn out to be bears too. The only safe place is where bears never go, and there aren’t very many places like that.

  8. Wow, this made me cry. It is so very true and exactly how I feel. I do have anxiety/panic disorder and every single thing written are all the things I worry about. Especially about outliving my child.

  9. You put my exact thoughts in writing. Its uncanny. My mind just cant switch off looking for bears … I guess its ok cause who else will, if a mom doesn’t.

  10. This was incredibly well written and goes straight to the heart. My son is very high functioning and pursuing a college degree. Still, some bears remain. The main difference with us today is we have to learn when to let him gave some of those bears himself. That is a challenge for any parent.

    Thank you so much for posting this.

  11. I just stumbled across your writing via twitter. I wish I had found it sooner Thankyou so much for writing this. Everything I am feeling at this very moment written so beautifully. Here I was thinking I was being silly for having all these feelings. After reading this article I have decided to go & talk to a professional about them.

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