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."

Autumn's Paradise: Vacationing "Down the Shore"

"There's a place that she calls her own, which feels similar to home. Where the waves glisten in the sun as they crash down onto her tiny feet. Sand in her hair, everywhere, caked onto her skin, but she doesn't care. She loves the feeling of water and sand as she runs freely during low-tide. This is a place that she can finally be free. Where no one sees her autism, just a young girl enjoying the sea. This is a place that may be simple to you and me, but to Autumn, it's her kind of paradise and where she's meant to be."-Trish P., Autumn's Paradise

Summertime tends to be when many families take vacation. A years worth of planning jammed into one week of fun surrounded by the people they love. Some go to amusement parks, popular beaches, the mountains, all-inclusive resorts, cruises. Some travel by airplane, pack up the car and leave towards their destinations at 3am as the kids sleep soundly, or if they're like me, wide awake full of excitement. Then there are those of us who choose to stay close to home or plan day trips because it can be too expensive to go anywhere for a week during the summer months. Plus, sometimes the familiar is bliss. 

This year, I really wanted to go on a family vacation. I researched destination spots, calculated numbers, looked at weeks that the husband could use his vacation time, etc.,. In the end, we spent our time at my husband's grandfather's shorehouse. A place that I've grown to love and feel incredibly blessed and spoiled to have within my and my family's life. A house that has been in his family for well over sixty years. A house that survived the destruction of Superstorm Sandy barely damaged. A place filled with memories of happier times. It's where my husband spent every waking moment each summer as a child, where he proposed, and where our daughter felt the ocean water for the first time in her infant life. 

Going "down the shore" (how we Jersey folks say it) has become my daughter's favorite place in the entire world. Just like her father, she's addicted to the ocean waves. She's able to run and play and be a kid. Still, I have to keep a constant eye on her as she's a known bolter and she still doesn't understand the power of water, thus her safety is always a top priority while were there. I often spend time portraying goalie on the shoreline as she runs after the seagulls or wants to spend time in the water. No beach bums here, were in the water. No relaxing for this family, were walking along the shore looking for sea glass or in my case, keeping constant watch of Autumn. And they said going to the beach is "the easy life", not when your Autumn's mom and Autumn makes the energizer bunny look like a turtle as to how busy she is along the shoreline. My fitbit goes into overdrive the days were at the beach!

I'll be honest, going down the shore wouldn't have been my first destination of choice mainly because of the above. Add the outsiders asking intrusive questions, Autumn's random sensory triggers and it becomes exhausting to the point that I can't wait to leave and take a vacation from my vacation! 

However, the silver lining of it all and my entire point here is despite how I personally feel, despite the exhaustion, the questions, possible judgments, the drive (oh don't get me started, one word: GSP, Jersey people know my pain), seeing her little face light up and smile whenever her toes touch the sand and water is worth every moment of my personal discomforts. 

For instance, for a few brief moments, Autumn would grab my hand and the two of us would walk the shoreline together. No words. Just the two of us taking in the views and smells of the ocean breeze. I looked down at her as she looked up at me with a grin on her face that said, "I'm having a great time!" and then she let go of my hands and ran to the nearest water pool, jumping and splashing her little feet. Then there's the sitting in the sand building sandcastles together down by the water's edge (more like mountains, but who's judging). Autumn would take a break from digging to sit her wet, sandy self in my lap giving me her pressure squeezes. Despite my own sensory system going into overdrive, to be able to sit with my girl and enjoy that moment is something that I'll cherish forever. These are the memories that I'll take with me into old age. The ones that I'll look back on and smile and forget the hard moments, but just the good ones. 

Thus, vacations aren't easy. We forget about the kids being off-balanced, the meltdowns, tantrums, overpriced items, and the long lines, as we filter out the negative and only choose to remember the outcome and positives moments.

Maybe I didn't get that "dream family vacation" away to someplace exotic, what I got was even better: a daughter within her own version of paradise and that's pretty darn perfect. Plus, I had a great time and the best part of it all, Autumn did as well! 

Xoxo,

Trish