Tag Archives: special needs parents

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.”

 

 

Growing Pains: One Year of Flappiness

 A year ago, I sat on my couch – staring at my computer screen, trying to come up with an original name for a blog.  I don’t remember everything I tried, but I do know just about every domain referencing puzzle pieces is taken.  (I’d like to take the time, on behalf of the autism community, to issue a huge mea culpa to the online jigsaw puzzle industry.  Sorry.)  After giving up on puzzles, I started over with flapping, then flappy, then happy – and Flappiness Is was born. 

I needed an outlet.   I looked at a few autism blogs (quickly realizing special-needs parent blogging wasn’t exactly a new idea).  I noted that most of them had a presence on social media and resolved to do the same.  And then I wrote my first fledgling post.  My goal was simple.  I just wanted to talk to a few people who knew what I was going through. 

And then my world expanded.  I can tell you I never dreamed of the following this blog would attract.  The heartfelt stories of those in the trenches.  Words of wisdom and motherly reassurances from women who’ve already raised their children.  Honest, illuminating, and kind perspectives from self-advocates.  Emails and private messages comparing notes, asking for advice, and saying thank you.  The sharing of tips, advice, resources, information from so many.  I never imagined that this little labor of love would give me so much more in return. 

I’m not the same woman I was one year ago.  My skin is a lot thicker.  I’ve gotten my son formally diagnosed, enrolled him in public school, watched my beloved father pass away, dealt with probate, renovated a house, moved, put my innermost thoughts and feelings on the internet, gone viral, been published in a few places, encountered scathing criticism online, and had a major health scare.  I’m evolving from someone who cared what everybody thought to one who realizes she can’t please them all.  My sense of purpose is growing.  And I’m realizing that I still have dreams of my own that are worth pursuing.

All because of you. 

Yes, this blog has been an extraordinary experience for me.  I still cannot believe that people have been interested in what I’ve had to say over half a million times now.  And I’m so very grateful for it.   I have made amazing friends in this blogging journey.  Wonderful people who have validated my concerns, joys, and even my darkest moments.  Tireless advocates who humble me in their devotion to and efforts on behalf of our cause.  Self-advocates who inspire me to dream big dreams for my son and all those like him. 

Thank you for casting light upon this path, for showing me the surest places to set my feet, and for reaching out to hold my hand.  It’s a good thing to know you’re not alone.

Thank you.

 

 

 

 

“Yeah, but this is a group of people who understand heartache.  Folks like that aren’t the type anymore to get overly upset or judgmental about things that don’t really matter.  They know the difference too well.”

-My Dad  (upon hearing me remark about the incredible degree of acceptance and good sense I’ve recently discovered about the special needs parenting community)