Celebrating Autism World Awareness Day
I can’t think of a better way to honour Autism World Awareness Day than by sharing what I am most passionate about… giving ASD Moms back their power.
What do I mean specifically by “giving ASD Moms back their power”?
I’m on a mission to teach ASD Moms the skills to manage challenging behaviour and to feel competent as parents, and at the same time cultivate a more positive and loving relationship with their ASD child, and the entire family.
Perhaps I should start by sharing my story with you…
In 2001, my beautiful, 5-year-old son was diagnosed with Asperger’s Syndrome, after a gruelling 2-year search for answers. Prior to his diagnosis, I was working full time as a marketing professional, managing the global marketing program for an international company based in Peterborough, ON, Canada. As a dedicated Mom, I left my job to try to seek help, as so many ASD Moms do. Thankfully, and quite by chance, I was given a brochure on Relationship Development Intervention (RDI®), a parent-based approach to autism that took a developmental approach to ASD, rather than a behavioural approach. To make a long story short, my son is doing really well and I’ve been certified as an RDI Program Consultant since 2006.
(If you’d like to read a document I recently wrote on the key differences and assumptions between the two approaches, please click here. )
Fast-forward to today, April 2, Autism World Awareness Day. Here’s the problem as I see it.
The Ontario Government (and most governing bodies worldwide) are telling parents that their children need behavioural therapy. In following the advice provided, and seeking funded treatment, naturally, parents seek behavioural therapy.
Let me be clear; I’m not suggesting that there isn’t a place for behavioural therapy, but autism is NOT a one-size-fits-all disorder. It also strikes me as very perplexing that the research in support of a behavioural approach is decades old, and not at all in sync with much newer research on the brain, neuroplasticity or child development! Odd, don’t you think? We’ve been so focused on trying to change behaviour that we’ve completely ignored the ramifications of neurodevelopmental aspects of ASD, and we’ve also almost completely left parents out of the equation!
Who’s driving the bus here, anyhow?
I took it upon myself to do a little research on what ASD Moms really need (more on that in a moment). In the last 4 months, I’ve spoken to over 40 Moms, whose children have had ample ABA-based services. Ironically, they still feel completely ill-equipped to manage their child’s difficult behaviour.
I also surveyed 150 parents, who told me almost unanimously that their biggest challenge was managing their child’s difficult behaviour. So if the “gold standard” treatment for ASD – the only funded option — isn’t making a difference for these families, what’s wrong with this picture?
As an ASD Mom, I still remember the feelings of guilt, shame, isolation and helplessness like they were yesterday. It’s gut-wrenching. The woman who gives birth to this child… the couple with hopes and dreams for their child’s future is powerless to do anything and told that someone else has the skills to help their child. If things weren’t already bad enough, ASD Moms now feel even more incompetent, and are rendered dependent on therapists, feeling out-of-the-loop and waiting “to be rescued.”
Behaviour is but one aspect of autism… and quite simply the “tip of the iceberg.”
Parents deserve more. They deserve to understand how autism disrupted their child’s development and severed the very relationship through which their child’s development would normally have blossomed. Learning this alone gives ASD Moms a tremendous sense of relief; it gives them the knowledge and understanding that they’re not at fault; that they didn’t mess up, That no matter how well-read, patient or determined they were, their family couldn’t have avoided their real-time circumstances or the palpable tension between parents and other family members. Until you’ve lived it, you can’t possibly understand it.
Parents love their child more than any therapist ever will. They are more invested in their child’s success than any well-meaning professional could ever be. They will have their child in their lives as long as they walk the earth. And no one can possibly know their child better than parents themselves.
Having said that, in my view, what parents need is a trained guide. Someone who can help them learn to manage difficult behaviour and to cultivate their child’s potential. (Now THAT’s where we should be putting more focus and dare I say, funding.). By no means am I suggesting that behavioural therapists are not well-intended. But when you give an ASD Mom who “gets” autism from a developmental perspective the skills to make shit happen, she’ll do it, and boy will she be amazed at what is possible!
Not only has our system given parents the message that they’re not qualified to help their child, they’ve also been told that this is a “time-sensitive” problem… that if they don’t get their child into therapy ASAP, there will be tragic consequences.
But it doesn’t end there. Their child’s name is then added to an ominous, all-powerful waitlist, which only adds to their torment and feelings of helplessness. Those who are able to, pay a ridiculous amount of money, risking the roof over their heads to give their child the behavioural therapy they’re told is required.
No one has told them what THEY CAN do themselves. No one has publicly told them that with support and training THEY have the power to not only manage their child’s behaviour, but they can help their child become more resilient, to problem-solve, and to relate to others in genuine give-and-take relationships.
Five months ago, I sat in my make-shift office in Ottawa, at Ronald McDonald House, which consisted of my Mac, a desk lamp and a small table I bought at COSTCO. (My daughter and I spent 6 months there while she was being treated for an eating disorder. I worked during this time to serve clients in my private practice).
I fumed over the misinformation these parents had been given not only because they were “told what their child needed” but worse, the absolutely tragic loss of potential in their children. I felt a deep sense of gratitude that I had taken back my power as a Mom, through the chance discovery of a developmental parent-based program. I marvelled at who my son has become despite the many ups and downs we experienced during our personal journey.
Meanwhile, so many parents were unaware of the true potential that exists in their children, told that ABA was the only “evidence-based” approach that would be funded. The best they could hope for was to mould or shape or extinguish their child’s behaviour… to give their child “skills.”
And then it occurred to me that not only did I have the first-hand experience as an ASD Mom, but most importantly the training and knowledge through my private practice as a Certified Relationship Development Intervention (RDI®) Program Consultant. I’ve had my business, Equinox Family Consulting Ltd, since. 2006. It dawned on me that I could create a program for Moms that would at allow them to understand autism differently — through a developmental lens; to learn to manage their child’s behaviour not by trying to “stop it,” or “fight it” but by understanding what’s behind it… to learn how to show up in a way that would shift their child’s behaviour, and at the same time cultivate a more positive and loving relationship with their child.
And that’s precisely what I did. I called it Lemons to Lemonade Better Behaviour Bootcamp.
The first Lemons to Lemonade Better Behaviour Bootcamp ran in January after I conducted the research mentioned earlier, to ensure I provided the solution that ASD Moms wanted and needed. We met online for 7 consecutive weeks through Zoom, a video conferencing platform.
Each week, there was a teaching component, and small assignments were given to deepen their learning. We stayed connected through a private FB group, and I supported and motivated each Mom daily. They also received a private coaching session with me. Through the program I taught this group of 6 Moms the following:
- A developmental approach to treating ASD, and how looking through this lens opens up a completely different view of our children, their struggles and what WE as Moms (and Dads) can do about them!
- How “getting a child to comply” isn’t enough for the quality of life; our kids are capable of SO much more than we give them credit for! We can teach our kids to be able to think and problem solve… and I taught these Moms how to do just that.
- How to identify and shift negative behaviour patterns between parent and child.
- How ASD impacts information processing, and by shifting our communication style our ASD children can better “hear us.”
- How to minimize the duration and frequency of meltdowns.
- How to use EFT or “tapping” to reduce their stress and their child’s! (I am a Certified EFT Practitioner and I provided weekly tools)
- How parents hold the key to positively impacting their child’s development.
- How to avoid getting “hooked” into power struggles repeatedly. (How to stop nagging and how to be proactive rather than reactive.)
- How to praise their child to encourage more of what they want to see, and in the process deepen their relationship and motivate their child.
- How to understand their own behavioural style to maximize their strengths and minimize their behavioural obstacles (how to reduce their specific style “reactions” when under a great deal of stress)
Here are some testimonials:
“In the 6 years since my son was diagnosed with autism, he has had every kind of therapy and support available. Yet in all this time I still found myself unsure of how to manage his behaviours without resorting to consequences and reward charts. These methods often failed, leaving me frustrated and lacking confidence as a mom. This program shifted my focus from behaviour to development and gave me back my power. In a few weeks, I learned how to stop playing “drill sergeant” and to communicate with my son so that he could really listen. I grasped the stages of anxiety, the differences between a tantrum and a meltdown, and how to respond accordingly. I discovered my stress triggers and how my own reactions influence my son’s behaviour. Reframing my thoughts and practising daily self-care effect how I show up and interact with my son. I discovered how to set effective limits and how to praise “the right way.” All of these seemingly small changes added up a huge difference; not only did my 9 yo start listening more often, I felt closer and more connected to him than I have in a long time!
Recognizing that no two families are the same, Sue took the time to get to know us in order to provide personalized feedback for specific challenges affecting our family. I would highly recommend her program to a parent raising a child with ASD—or any parent for that matter.”
~Julie M Green, Toronto, Freelance Writer and Founder of Spectrum Parenting Facebook Group.
“Through Sue’s Better Behaviour Bootcamp I began to see that I have the power to make positive change in my son’s life, and in our relationship. I learned strategies that enable me to prevent meltdowns, and to communicate in a way that allows him to “hear me” and feel more competent. I have benefited tremendously from learning EFT (tapping), and have used it on my with great results. I would highly recommend Sue’s program to other ASD Moms!”
~Samantha, Aurora, ON, Canada
“Before meeting Sue, I felt helpless and overwhelmed as a mother to my son with ASD. Participating in Sue’s Better Behavior Bootcamp taught me how to take back control of my life and provided me the tools for a happier, healthier family life. My son has participated in a number ABA based programs that were of no help to us as parents. Sue’s focus on development rather than behavior has truly been eye opening and life changing. In the couple months that I’ve worked with Sue, our family is less stressed, more connected and problematic behavior has decreased. I also enjoyed the way the Better Behavior Bootcamp is run because it gave me the opportunity to connect with other ASD moms and to share our experiences. Thank you Sue for all your help and support!”
~Marlene, Ajax, ON, Canada
I stand behind my mission… to give ASD Moms back their power. To give them the skills to manage difficult behaviour, to feel competent as a parent and to cultivate a more positive and loving connection with their child with ASD.
If you’d like to learn more about the next Better Behaviour Bootcamp, please visit lemonstolemonade.mom to book an appointment to speak with me.
April 4 – May 16/18, 1pm – SESSION FULL
April 5 – May 17/18, 12pm – SESSION FULL
April 25th – June 6/18 – TWO NEW SESSIONS OPENING UP!
SESSION 3A – WEDNESDAYS @ 1PM EST, AND
SESSION 3B – WEDNESDAYS @ 7PM EST
Registration is limited to 10 participants in each group.
Visit lemonstolemonade.MOM for more information and to schedule a time to speak with me.
In closing, I believe that our ASD children have the potential to contribute to our troubled world in a way that we are just beginning to understand. And I intend to contribute to the very people whom mother nature meant to cultivate that potential; their parents, and more specifically ASD Moms, who lead the charge in most families affected by ASD. (ASD Dads, you ROCK and are always welcome to join in.)