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From Devastation to Hope (Why I do what I do now)

🕑 4 minutes read
Posted July 16, 2020

By Sue Simmons
Founder, Equinox Family Consulting Ltd.

My name is Sue Simmons. Some who know me call me Sue-Nami, which is relevant to the subject of this article; the stress experienced by parents of children with autism.

I’m delighted to have been invited to write a series of short articles for the Unyte-iLs newsletter. In this article I’ll share how as the mom to my son with autism I eventually managed to circumvent the crippling stress that too many parents experience today. As a professional in the field since 2006, I’ll share what I believe we can do better to support parents, and the compounding positive impact it will have based on sheer logic.  

Throughout the series, I’ll be offering a perspective on autism that may differ from the way you perceive it today. I aim to pique your curiosity through client stories, and challenge you to see that as parents, you have infinitely more influence over your child’s social and emotional growth than you believe you do. And of course, I’ll also offer my experience as a new Safe and Sound Protocol, (SSP) Provider, and how it augments the work I do with parents beautifully.

I began my practice, Equinox Family Consulting Ltd., in 2006.  My work is primarily focused in two areas. The first is giving parents and caregivers the knowledge and skills to reduce challenging behaviour, and to build a deeper emotional connection with their child. I also use EFT or “tapping” with parents to ease their stress whenever possible. As I see it, more connection and less stress will create more harmony for the entire family.

You could say that “my mess became my message.” I was once a very messy, struggling parent who faced autism head-on. I refused to relinquish my son to autism and was determined to learn how to parent him. I was terrified, but more so the consequences of not trying. Diagnosed at 5, he’s now in college and despite being a little quirky he’s an awesome, happy guy. 

Today, after almost two-decades of training and supporting families (many who start out as messy as I was), I want to give you a message of hope. Hope for your child, for your family, and perhaps for your clients if you’re a therapist yourself. 

If you’re a parent, “I get you.” Like most parents, after my son’s diagnosis, I was left to white-knuckle it day-by-day. Nothing could make a parent feel more helpless, and this undoubtedly impacts life at home. I know how gut-wrenching it is to think of the future with abject fear (or avoid thinking about it altogether). I also know what it’s like to feel defeated and hopeless. Like you, I’ve faced humiliation in the grocery store, failed family outings and disastrous holidays. 

It didn’t come as a surprise to me when I read an article by Disability Scoop in 2009. The article compared the stress that moms of adolescents and adults with autism experience to that of combat soldiers. When I share this with parents today their eyes glaze over in disbelief. Why? They felt their stress was because they were deficient! On the contrary. They were left out of the equation! They were rendered powerless.

In March of this year Disability Scoop released another article, now suggesting that 1 in 5 parents of kids with autism qualify for a provisional diagnosis of PTSD. At some point, we have to stop and wonder, whats happening here? Whats not working?

There are two sides to every equation. In this equation, there are children affected by neurodevelopmental challenges, and on the other, their parents. With the lion’s share of the focus on children, how are parents to support their children to live their best lives when they’re not properly equipped themselves, not to mention woefully misunderstood? This equation is hardly balanced. 

Early on, I was fortunate enough to find a developmentally-based approach and a specialized parent coach who taught me the ropes. I learned to see my son’s challenges and my reactions to them through a new lens. I learned how to calm the waters, connect emotionally with him and to support his growth through my day-to-day interactions with him. I became part of the equation and part of the solution. Every parent deserves to feel like they can understand and connect with their child; to work together and play together. We’re not doing enough to honour and support the people who are ultimately responsible for the future of these children. 

For the sake of families and their children it’s time to balance the equation. Parents deserve stress relief, effective parenting tools and compassion. How can they be effective while feeling emotionally isolated, stigmatized and struggling with stress similar to combat soldiers? 

For me, the road less travelled hasn’t been without massive ups and downs, but I’m grateful for every experience that has led me to where I am today. Maybe, just maybe, with compassion, tools and support, parents can feel more equipped and empowered, and leave the stress of combat to the soldiers themselves. 

In the next article, A Better Way? I’ll be inviting you to view autism through the lens of your child’s development, rather than focusing solely on what we see on the surface. I can’t wait to share this new and refreshing perspective with you!

If youre interested in joining Empowered Parents Navigating Autism, Sues free FB Parent group, click here. The group offers a place to learn and grow, and a community of parents seeking the best for their children and families. 

You can visit Sue’s website at Equinox Family Consulting Ltd.

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