What My Journey Has Taught Me
I turn 48 years old at the end of June which means that I’ve been a caregiver for a quarter of my life.
The last 12 years of my life as a caregiver have been the most challenging for sure; yet I have learned so much by being Summer’s mom. My daughter has both a rare genetic disease and autism diagnosis - and these translate into her having global development delay. In layman’s terms, delays in gross motor, fine motor and speech.
The journey all started when Summer began weekly therapy at 18 months old. One year of physical therapy to learn how to walk; and the year after she did occupational therapy to learn how to hold a spoon and put her socks on. Speech therapy would come much later as she only started saying words when she was 7-8 years old.
On this once unimaginable path, I’ve unearthed many gifts. The most profound being that my happiness was non-negotiable.
As a recovering people pleaser and peacemaker, I would often put my own needs last. In fact, I had ignored my own needs for so long that I wasn’t even aware that I was ignoring them, I simply put everyone else's needs, requests and demands above my own. Wasn’t that my job as a good daughter, wife and mother?
Having a daughter who was still learning how to find her own voice meant that I needed to learn how to communicate with her on a deeper level.
The known Albert Mehrabin’s rule of personal communication is the 7-38-55 ratio: 7% spoken words; 38% voice, tone; and 55% body language.
While many of us never stop to consider this reality, I knew that I had to start connecting with my daughter in a more intentional way. I had to let her know that she was safe and loved even when I knew that I couldn’t rely on words. In addition to her not speaking, she also didn’t understand the words that I was saying.
This awareness of needing to be much more intentional of my interactions with my daughter has had a slow ripple effect across all areas of my life.
The first conscious change I made was when Summer was on the change table and she would be fussing and fighting me while I tried to clean and change her. She would have been around 2-3 yrs old, so big enough to have some strength.
I remember so clearly how I bent over and touched my nose to her nose and then my cheek to her cheek and then gently nodded my head up and down to rub our cheeks together and whispered “shhhhh” in her ear. It was an attempt to calm her and reassure her that she was loved and safe.
That began our first way of communicating. To this day, we still touch noses……nine years later. And yes, it still warms my heart and she still giggles.
It was one of my first lessons in being present and reminding me that our children need us more than they need things. It planted the small seed that I was enough. That at the end of the day, all my daughter wanted was me - and a happy me. Thus began my road of self-discovery to what happiness means to me.
This article is also published on the Caring Support website at What My Journey Has Taught Me.
Leave a comment
Also in News
At the beginning of this crazy journey of being a parent of a child with special needs, I spent too much time listening to the thoughts, beliefs and visions of those around me.
Jordan has spent the majority of his life in the shadows of his sister--the therapy sessions, the behaviour issues, the extra attention, etc. Here are my some of my lessons learned for communicating with my neurotypical son.