It’s come up before. . . this research saying autism parents having stress levels similar to combat soldiers. I’ve mentioned PTSD and the ruthless grip of anxiety.
But it bears repeating.
There’s an aspect of special needs parenting that I tend to forget. If I need a refresher, perhaps you do as well.
It’s the link between special needs parenting and hypervigilance.
Special Needs Parenting and Hypervigilance
Hyper-vigilance is a term associated with PTSD (post-traumatic stress disorder) that is defined as “the condition of maintaining an abnormal awareness of environmental stimuli” and can include “heightened startle responses and flashbacks.”
Put simply, hyper-vigilance means always being on guard.
- Constantly scanning the environment for any signs of danger or potential threat.
- Having a heightened awareness of one’s surroundings and the pitfalls that might be lurking there.
- Entering into everyday situations ready to fight or flee if necessary.
- Living with abnormally high levels of fear and anxiety.
- Feeling (and often being) condemned for letting your guard down for even a moment.
- Being weighed down by guilt for wanting relief.
I became a hyper-vigilant parent before my autistic son was even diagnosed.
In some regard, all kids train us to be hyper-aware. When our children are infants and toddlers, we are constantly on the lookout for dangers–because we have to be. Even then, though, we can learn to relax when we know baby’s in a safe place.
With special needs, the hyper-vigilance only gets worse as the child gets older.
The danger seems to grow as the child matures and becomes more independent.
Fight or Flight
At the beginning of my son’s first grade year, he was starting a new school, his third school in three years. We went to “Meet the Teacher” night the week before classes started.
It’s important to mention that at this point in our journey, my anxiety was beginning to peak. I was an absolute nervous wreck. . . and didn’t realize it.
When we entered the classroom to meet the wonderful special ed teacher we would spend the next four years with, two things happened immediately.
First, my son saw a boy he recognized from kindergarten whom he didn’t like. Second, the name on Travis’s folder said “Trevor” instead. Both potential freak-outs waiting to happen.
Instantly I went into “fight/flight” mode. I was terrified and panicky–like the astronauts in the movies when a robotic voice is counting down before the spaceship self-destructs. T-minus 10 seconds.
I know the teacher must’ve seen it in my eyes when I told her the name was spelled incorrectly. But being the pro she was, she calmly and quickly fixed the problem. Meanwhile I followed Travis around the room, never more than an arm’s length away, my eyes as huge as dinner plates and my breathing non-existent.
Eric was irritated at how anxious I was, but I couldn’t help myself. In my mind (and in my experience), Travis was a ticking time bomb. It wasn’t a matter of “if” he would explode. It was only a matter of “when” and “where.” And I had to be ready to minimize the explosion, save face, and make a speedy escape.
In those days, I spent every waking hour trying to make sure the “when” and “where” moments happened in private and not in public venues for the whole world to see (and judge.)
I avoided places and situations.
- I didn’t go to big stores or playgrounds where he might run away.
- We didn’t eat lunch at McDonald’s or Chick-Fil-A because of my fear that he might hit another child or throw a tantrum in the play area.
- When we had to go out, I pulled him in close and always kept a firm grip on him.
- I kept him far away from little old ladies (who were, strangely enough, a huge trigger for him when he was that age).
Every time we were out in public I was scanning the room, searching frantically for anything that might possibly trigger an outburst.
Sometimes I could catch them in time. Like when we went to a little girl’s birthday party and there were pink plates and pink cupcakes. I anticipated Travis’s reaction and was able to remove him before the meltdown escalated.
Other times I didn’t move fast enough.
The whole ordeal affected our family’s social life. I didn’t want to go out. Social outings were exhausting and terrifying for me. At least in the comfort of my own home I didn’t have to risk being mortified and embarrassed by my son’s behaviors. And I didn’t risk being judged as a “bad mother” by outsiders who didn’t know all the details.
Awareness is Key
I write all of this not to complain about how hard my life was . . . or is. There are still events and situations we avoid like the plague. I still get nervous and antsy in places where I don’t know how Travis will act or react.
The reason I write this is to make you aware.
If you are a special needs parent, you need to know that this isn’t normal parenting. This is hyper-vigilant parenting, and it’s a huge part of raising a child with special needs.
- It’s not something you can remove from your life altogether. But recognizing and acknowledging that it’s part of the cards you’ve been dealt will make it easier to come up with coping strategies.
- It’s also incredibly important that you don’t compare your experiences to those of non-special needs families. All families have their issues and difficulties, but if you are constantly looking to non-special needs parents as your example and then berating yourself for not doing a better job, you are not helping your situation. Chances are, if those same parents were in your shoes, they wouldn’t handle the challenge as well as you do.
- And, finally, special needs parents — and I’ve know you’ve heard it before but it’s crucial — you must be absolutely committed to self-care. The everyday stress levels you experience are NOT normal. They are way above average, and you must confront that stress head-on. Do whatever is necessary to get the rest, stress relief, and emotional encouragement your soul and body need. It is vital to both your health and your child’s well-being.
To Those Who May Not Understand
If you are not a special needs parent, I write this as a call for sympathy and support.
If you know parents of special needs kids, I promise you, they are dealing with this phenomenon. They are experiencing hyper-vigilance in some form or fashion.
It’s simply a part of being a special needs parent.
- They are not “letting their kid get away with it.”
- They are not slacking on their parental duties.
- They are not enabling their children or encouraging bad behavior.
They are — most likely — in such a state of constant hyper-vigilance that it is wreaking havoc on their own bodies, minds and souls.
And just knowing this can help you be more sympathetic, understanding, and kind. You wouldn’t criticize a combat soldier for feeling stressed. Remember, these parents are facing similar stress levels. The research is there to prove it.
What special needs parents need is support, encouragement, and help. Not judgment or condemnation.
They need someone to recognize what it’s like to be in their shoes and to be willing to walk alongside them. It’s a hard battle, special needs parenting. The last thing these parents need is another enemy to fight.
A soldier doesn’t need another enemy.
But every soldier needs a friend.
What are your thoughts? If you are a special needs parent, what is your experience with hyper-vigilance? How do you cope with stress levels?
And if you aren’t a special needs parent, how can you encourage or support the parents who are dealing with high levels of stress?
Leave your comments and thoughts in the comment section below and let’s keep the conversation going!