Hypervigilance is Real

It's 2am and the sounds of rustling are heard over the static of the baby monitor that set her off like an alarm clock to start one's day. Awaken, she looks up and there is her precious daughter standing at the edge of her door. Thankfully, she climbs into bed with her, but what if? What if she decided to open the latch on the French doors and went outside? What if mom didn't wake up because she didn't hear that noise? What if, as things could always be worse. Mom always waits to go back to sleep once she's asleep because these thoughts plague her mind. 

Raising a child with autism who has a tendency to bolt, can cause much anxiety for the parents, in which that anxiety can turn "helicopter parenting" into something more along the extremes of Hypervigilance. 

Now for those reading this and asking themselves, "what is hypervigilance?" It's a term often used for those who have an extreme heightened sense of their surroundings, who, often times, scan for dangers and threats. This is something that unfortunately many who suffer from PTSD go though, especially our soldiers. I had read about this condition and how some parents of autistic individuals also suffer from this and it hit me like a ton of bricks: It is something that as a parent to an autistic child I suffer from and I hate it. 

I don't want anyone reading this to think I'm comparing the stress levels of being a parent to a child with autism to that of a soldier here, this is just going by my own personal experience and feelings. 

As Autumn grows older, I've become more hypervigilant when it pertains to her overall safety. It is incredibly difficult for me to relax and let my guard down. Wherever we go, I am constantly scanning places and imagining the "worst case scenarios" and what I need to do, prepare myself, if they occur. I spend much of my time making sure said bad things don't occur/happen to Autumn and It's not a life that I want to live, but it's one of the only ways I can keep my daughter safe. This is about her overall safely here, which has turned me into a constant watchdog since Autumn still struggles with understanding forms of danger. 

As I meet more parents of special needs children and autistics, I'm learning that these feelings I have are typical of most of us. We can't go anywhere without worry and frustration of the "what if" triggers, the potential for meltdowns, bolting, and the judgments of a society that isn't built to accommodate our children. We are constantly fighting, advocating, and appear overbearing, uptight, as well as anxious because of the fears and worry we have once our sight leaves theirs. Even at home, relaxation isn't always achieved.

For instance, for us, dinner time is the worst, as there are so many triggers that may set Autumn off and into a frenzy. I try my best to make it a stress-free experience, but it usually never works out that way. If her food touches one another, too much light, sound, words being said, etc., it can trigger her to scream bloody murder and meltdown. She also sometimes starts to choke on her food because of over stuffing and we have to remind her to take small bites and to drink her juice when she eats too much. Even when we eat separately, there's problems. Each evening is different so these "meltdowns" can be inconsistent and unpredictable. Then there's going out anyplace outside of our home. Anytime she hears a child make a loud noise, she will scream and put her hands over her ears. Each and every time. 

I haven't even gotten started on me leaving Autumn for a second to go to the bathroom or clean up the dishes. I find her doing things that could truly hurt her (climbing on furniture, trying to pull the blinds open, etc.). Then there's her running and bolting. Even in our backyard we have to stay on top of her. It can be exhausting chasing her all over the place. It still feels like we have a two year old and not a four year old who may listen when we tell them to "stop" or "come here". Even leaving her with others hasn't been easy (thank goodness for background checks and Facebook stalking to make sure people, including her teachers, are legit.). 

I'm sure some of you may be thinking I'm being overprotective, overdoing it, paranoid, etc.,. Well walk a mile in my shoes and maybe you'd understand. This is what most parents of special needs children and adults go through on a daily basis. I haven't even brushed the surface here. Hypervigilance for parents and caregivers raising special needs individuals is real. I wish I could change it about me. I wish I could just let go and let be, and believe me, I'm doing better, but it's  taken me time to get there. I hope that one day I can truly let my guard down and trust Autumn and others who care for her. I wish I could just go someplace and not have to fear for her safety or explain why I hover over her because of my own fears of her getting hurt (like down the shore or at the park) as I have to constantly remind her and teach her about safety and danger risks as she still doesn't comprehend them like maybe a typical child would.

Sometimes it's just easier to not expose ourselves to certain risks, but as a therapist, I know the only way I can overcome these obstacles within is to face them head on. It hasn't been easy to say the least. I also know that Hypervigilance is a form of anxiety, in which I suffer from but have made great strides overcoming. However, since having Autumn and her autism diagnosis, it's starting to creep back up again. This is why I exercise. This is why I meditate. This is why I write a blog and consult with my therapist colleagues, family and friends. 

I wish I can tell other parents who are also going though this that it will get better in time. That the anxiety and Hypervigilance will go away, but it's easier said than done. As a community, we need more supports for parents and caregivers. We need to come together and help one another and say that it's okay to feel this way, but it's not a constant way to live and what can we do to change this or at least decrease being on edge all of the time. I wish I had more answers. 

So for those who are reading this, who know parents raising special needs children that seem to be struggling with some of the similarities that I've shared above, my best advice is to ask them how you can help and to stop your judgments. Us special needs parents already have to endure so much and often times feel isolated and alone. We need help sometimes too even though we may act like were okay and have everything together. 

Lastly, this post has been extremely difficult for me to write and has taken me some time to do so. This is part of my reality that I wish I could change. It's a battle that I'm uncertain as to when it will end. All I can do is share my story in hopes that they help others going through similar battles know that they're not alone. 

Xoxo,

Trish 

"The journey's often uncertain as that is life."