Autism · Grief · Parenting · Survival Mode

Hypervigilance and Mothering a Child With Autism

I had a dream last night.

In it, my son was in pain, but I couldn’t understand where, or what was causing it.

I was calm, but focused. I kept trying to ask him questions about his body in a different way, hoping he would be able to communicate what was bothering him.

I asked my husband if he had noticed anything different, anything off.

I was suddenly in a doctor’s office, trying to find the right words to describe what was going on, to a faceless, cold physician.

I started searching in all the rooms of a very long corridor, becoming more and more frantic.

I was desperate to help him.

When I woke, I was grateful that he wasn’t in actual pain.

It also struck me that this dream was an incredibly accurate depiction of what my life feels like every day.

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Hypervigilance is a word that is often used in referencing mothers of children with autism. It is actually a word that was first used to describe a person in combat, and the trauma of constantly being on alert, searching for threats, a few breaths away from total fear, exhaustion and panic.

Combat stress.

Our days on alert for our children can have the same effect as if we were in combat, fighting for our lives.

Sleep deprivation.

Caring for another human being who may weigh more than you do, or have strength far beyond yours when melting down.

Cleaning up messes – some of them just plain dirt (or in my case, salt water), some of them actually cleaning up biological waste.

Our bodies are physically exhausted to be sure.

But the most trauma comes from what happens in our minds.

The constant scanning for threats (Will he eat today? Take his meds today? Meltdown today? Hurt himself today? Hurt his brother today? Hurt me today? Spend the day curled up in a ball under his lycra sheets? Spend the day bouncing off the walls and recreating salt water tank set-ups? Leave the house? Throw something in public? Sleep past 4:00 AM? etc. etc. etc.) is what starts to take its toll.

The feeling of always being on alert, ready for the next whatever autism decides to bring, is what chips away at our momma hearts and minds.

And I am so tired of it.

I am not tired of doing all the things. I am tired of feeling all the things.

IMG_5603We went to a reef aquarium expo this past weekend.

Oh my goodness, it was like heaven for my salt water aquarium obsessed expert son. He loved it.

Our entire family went and got into it on his behalf.

He engaged with all the vendors. They understood him. They were blown away by how much this 12-year-old boy knew about the hobby. They complimented him, all day long.

He had a blast.

But you know what I focused on for the first part of the day?

It’s so loud in here. Why do they need to blast the announcements for the raffle over and over again in the speaker? Maybe we should take a break outside for a few minutes. Is he thirsty? Why didn’t I think to bring water? Oh man, what is he going to do when he realizes he does not have enough money saved up to buy that elegance coral he has been staring at for 30 minutes? I thought there would be more food vendors here. He is going to need to eat soon. What should we do?

I spent hours like this.

I was grumpy. I was on high alert. Most importantly, I was missing all the good that was happening right before my eyes.

At one point, my son asked if just the two of us could walk around together. He wanted to show me all the delights he had discovered and talk to me (well, lecture me, but you know) about all of their finer qualities.

As we moved through the building, slowly but surely, I began to relax.

The more I focused on him, and what joy he was experiencing, the less I noticed the environment. The more I looked at his sweet face, beaming as he talked me through one aquarium additive vs. another, the less tension I felt in my neck and shoulders. The more I paid attention to the compliments vendor after vendor gave me on what an impressive son I was raising, the more I began to enjoy our time together.

It was a great day.

Hypervigilance almost stole that from me. How sad. The very person I am trying to help and protect, is the very person I am missing out on connecting with and enjoying.

It was a good lesson.

The more I worry, despair, and stress, the less I see the good, the fun, and the joyful.

The more I try to manage and maintain, the less I notice his progress, his ability, his functionality.

The more I fear, the less I love.

I pray I remember this next time I feel the dread and doom coming on.

I pray I see what is right in front of me, and enjoy it, instead of worrying about the next problem.

I pray I see my son.

Because I am not a combat soldier. I am a mom.


Hypervigilance and Mothering a Child with Autism

16 thoughts on “Hypervigilance and Mothering a Child With Autism

  1. I love this story because it is me!!! It is my life, with different words and different scenarios, but it is me!!! Thank you for writing this!!’

  2. This is one of those secrets I keep pocketed only in my mind. Thank you for being the brave voice to vocalize what should have been admitted. It is then and then only , that we can relax and enjoy . Life is not stifled with the raising of a child with autism it is truly a blessing and we miss so much when we resort to hypervigilance.

  3. But I can NEVER let down and enjoy. The behaviors are too dangerous to themselves. I have twin boys who both have autism. One has HUGE elopement issues. I tether him to our autism assistance service dog. I LOVE outings but my hypervigilance can NOT fade. The article spoke to me. It validates many feelings. Thank you for writing it.

  4. This article spoke to me so much. I am hypervigilent, and I know I miss so much because I am constantly scanning the environment, the moods, the day’s to-do list for potential problems, for the causes of the (unavoidable) meltdowns. It’s exhausting and inescapable. I adore my children, but I work so hard all the time at this that I rarely have the energy to enjoy them.

  5. I wish I had learned that when my non-verbal son was younger. I was always on high alert and I think my vigilance to make sure he was ok stopped him from enjoying himself on the rare occasions we went out. It became evident when I didn’t realize I was asking him too many times if he had to go potty and he loudly proclaimed NO! I smiled and apologized to him. But I still wish I had tried to relax more and just be in the moments rather than trying to get thru them.

  6. Thank you.I have three kids on the spectrum, and other than other special needs parents, MOST of my friends, IRL especially, are Veterans with PTSD, because they are almost the only other people who truly “get it.”

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