My Story

two siblings sitting together at the beach, the kids are facing the camera and smiling

I'm a mother of two children ~ one 'neurotypical' son and one daughter with a rare genetic disease, global development delay and autism.

When I first saw articles linking caregiving and post traumatic stress disorder being shared in an online forum for parents of children with special needs, I reacted strongly, thinking to myself that people were trying to be provocative.

Psychology Today definition: an anxiety disorder that may develop after exposure to a terrifying event or ordeal in which severe physical harm occurred or was threatened. Traumatic events that may trigger PTSD include violent personal assaults, natural or unnatural disasters, accidents, or military combat.

Wow - I know people who have served in the military and suffer from PTSD - these are people who have lost limbs, lost brothers on the battlefield and witnessed war.

I could not compute. I told myself that I had never sacrificed my life to serve my country, and it almost felt dirty even thinking that I could have PTSD.

I now know how wrong I was.  

Parenting a child who is severely intellectually delayed and non-verbal is very challenging, but it is all that I have known as a mother to Summer. It was certainly hardest when she was one and two years old as she couldn't crawl, couldn't walk and couldn't communicate at all, so there was lots of screaming and unknowns while my husband and I navigated the health care system.

Since that time she has made great progress, meaning that she can now walk, run and jump. She has an endearing gait when she walks, as she sways a little from side to side. We worked very hard during physical therapy and occupational therapy to teach Summer how to walk, how to feed herself, how to get dressed, etc.

I always try to stay positive and celebrate all progress, however small it may be. I try to focus on solutions, surround myself with people who love me and I also take time for myself.

That being said, I am beginning to see what the accumulative effect of Summer always needing constant supervision has on me. I notice that my mind is always "on" and that it is harder to relax than before. On the rare occasion, I get gripped by fear of all the bad people in the world who could potentially harm her or take advantage of her due to her disabilities. 

Even today, at 11 years old, she still needs to be watched constantly. One morning, for example, she woke up at 5:30 a.m. and decided that I wasn't coming downstairs fast enough, so while I was in the bathroom, she went downstairs and opened the front door. I jumped out of bed and ran downstairs to find her in the driveway. She simply knew that by opening the front door that one of us would come running. What did she want so badly? To turn on the TV.

But imagine, the time that it takes to go for my morning pee, she is already outside. Thankfully we live in an open concept house that is not too big, so we can usually hear where she is if we do not have direct sight of her. 

Every year I plan a week down south without the kids for time in the sun and time to unwind. I'm always surprised at how light I feel while on vacation as I don't need to think or worry about anything. In fact, I cannot believe how much I sleep during one week. It's like my body knows that it can truly relax and therefore sleeps and naps and rests in order for me to be fully rebooted and recharged for another 12 months of being "on" all the time.

As I educate myself on the link between being a caregiver and post traumatic stress disorder, I no longer feel uneasy about the issue. I believe that I'm more aware of how I feel and am convinced that caring for myself is more important than ever. For me, this means eating well, exercising, journalling, sleep and time with loved ones. 

I'm excited to change the conversation on this important issue and caregiving in general.

While there are many challenges caring for my daughter, I have learned so much about my self - I have become stronger as I advocate for her needs and I realize what really is important in my life.

I know that I need to take care of myself to ensure that I can be the best caregiver and mother to my two kids.

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