Roger was calm and pragmatic, but this came with time, probably in part as a practical necessity, after the initial months of emotion and weeks in hospital with their newborn, trying to get answers… wWill she be okay? What are the challenges she will face? Will she be able to talk? What can we do to help her? At some point, you switch into very practical one-step-at-a-time mode. 

 

Join me this week as we take a close-up look at how one family wrestled with hope. I’ll explain why the idea of False Hope is… well… false! And we’ll unpack how hope can be used as fuel and necessary strategy for growth and change. 

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An Uncertain Future

 

“For the first 16 months, or up to two years, we were focused on keeping her healthy and alive... I started noticing things like she would be staring at the lights… she wouldn’t respond to her name being called, she just was like in another world” - Lisa, Mother of Autistic Daughter, Clara

 

This is Clara’s mother Lisa describing more of what they faced.

 

Roger and Lisa had been in practical survival mode for about 5 years, before I met them. Like most parents facing unclear diagnoses and an uncertain future, Lisa had spent hundreds of hours searching online for answers and a clear direction forward. 

 

“You’re at a loss as to what the best thing to do is, and you know you want to reach your child and help your child as fast as possible”

 

By the time Clara’s parents contacted me for a consultation about her autism, she was 6 years old, and they had already been through a number of other special education and care services including several months of a feeding clinic at one of the country’s top pediatric hospitals.  

 

When Lisa first contacted me by email, she wrote:

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“I've been feeling for a long time that there are other sorts of therapies which Clara could benefit from but really am running low on time and energy to research these and find the appropriate people.  Your ability to help us coordinate all of this and take the lead on Clara's program would be a "weight off my shoulders."

 

I smiled as I read Lisa’s email, because her words about “taking the weight off of parents’ shoulders” described perfectly what my mission has been in founding the Integrated Multi-Treatment approach and more recently launching a parenting platform and app called ThriveGuide. 

 

During the first several home-visits, my agenda was to determine what I used to call a “Treatment Map” which involves taking as many variables as possible, from the child’s biological health to their communication style to their physical home environment to their birth experience, to their motivations, etc. etc. etc…. as many data points as possible, to then create a precision plan. And we don’t limit the therapy options to just ABA or to only what a local government provides. As long as a program or strategy is evidence-based, and as long as it’s inherently respectful and can do no harm, then it’s an option on the table – I create plans as unique as each child.

 

 

New Hope

 

“The first day that we met Jonathan, when he came and he met Clara, Clara came and sat down next to him, what I noticed most was he really had a critical eye. He was able to observe her in a way that I hadn’t experienced before.” - Lisa

 

“It just has such a comprehensive view of not merely the autistic part of Clara but the entirety of Clara so that the autism treatment isn’t separate from how we deal with her as a human being on a moment to moment basis.” - Roger

 

I remember my first few conversations with Lisa and Roger in particular about what they believed about their daughter’s prognosis. What beliefs did they hold in their mind about her capabilities? She had a deformed palate in her mouth and hadn’t yet talked. What did they believe about her ability to learn to communicate? She was fed through a G-tube, a plastic tube surgically inserted from the stomach through her abdomen and through which they would pour liquified meals directly into her stomach. We spent time talking about their hopes and dreams of her being able to one day eat with a fork and spoon through her mouth, and then to be able to communicate one way or another that she liked the food and wanted “more please”. 

 

Yes, I said it. “Hope”. Despite all of the many challenges Clara faced, and despite the very grim future doctors and specialists had painted in their minds, Roger and Lisa still had hope. And lots of it. 

 

They had been told she would likely never talk. They had been told she may have to be fed through the G-tube for the rest of her life. But they refused to adopt these beliefs. They somehow knew that if they were going to take action for Clara, they had to have hope. 

 

Over the next four years, I designed and directed a therapy and education program for Clara. And we implemented hope as a strategy. But, not everyone would agree with this approach. In the autism field there is a lot of talk about False Hope. You know, the kind of hope that irrefutably can never come true.

 

That’s not kind to give to parents. 

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False Is False

 

Parents raising special needs children are vulnerable. They so desperately want to help their children that they are willing to do almost anything, spend almost any amount if they were convinced it would improve their child’s quality of life. And so, we are all vigilant of quack remedies and of unfounded claims. We are all careful to not sell False Hope. 

 

But in my opinion, we too often throw out all hope along with the false hope. 

 

In fact, let me make a bold claim: I think that False Hope is an oxymoron. They are two words that don’t go together. Except for believing in things that simply can never happen, like humans flying like birds or living for 300 years, how can hope be false?

 

Hope is defined as the belief that the future will be better and that you have the power to make it so. 

 

Hope isn’t a guarantee. It’s a belief… a belief that you have some agency to improve the future. And who can predict the future of an autistic child? Show me a professional, show me the top autism specialists in the world and I will show you people who, even in their great wisdom and vast years of experience, cannot predict an autistic child’s development. And with due respect for my professional colleagues, any professional who limits your hope for your special child’s future with their own limiting beliefs are simply selling you false hope … a false lack of hope!  

 

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Believe

 

For Clara’s parents and her support team, we had open discussions about the beliefs we held. We did a belief inventory to surface any beliefs we held that might restrict our hope and restrict our effort. 

 

At the same time, everyone on Clara’s Dream Team held the belief that Clara’s future could be improved with our effort. We held hope. And we used it strategically and, I think, in a reasonable, not false way: we looked forward and set tiny goals we all agreed were achievable. We made mini plans for mini forward steps weekly. She had success. This confirmed our hope in her ability to grow and to learn. 

 

So we kept hoping. This fueled our action. Hope with a plan.  

 

In fact, science has shown that having hope has several measurable benefits. In fact, there is now an entire field of psychological study called the “Science of Hope”! And researchers conclude that feeling hope is linked to better mental health, enhanced problem-solving skills, and improved resilience.

 

“Clara just zoomed… it was an overnight change…it was awesome and I just felt in my heart and soul that this was the right thing for us”

 

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Your A.I.M.

 

This week, I invite you to A.I.M. with hope. Give yourself permission to hope. 

 

Trust that you are smart enough and careful enough to not believe you can fly like a bird. And then add hope as a strategy to your tool kit. Choose a reasonable goal that you think your child can achieve. Then feel hope. Have the feeling of hope… it’s a good feeling, and science shows that the feeling of hope is like fuel. Hope fuels us to take action. Hope propels us forward. 

 

Nobody can guarantee how your child will develop in the future. But neither can anyone predict what your child won’t be able to do. 

 

But one thing is for certain: your strategic hope will move you and your child forward. 

 

After 4 years of intensive education and training with Clara fueled by strategic hope and precision planning, Clara blossomed into a social butterfly, revealing her bright intelligence, her humour, and her ability to learn. 

 

I was brought to tears of joy one day, as Clara played piano. A beautiful melody that filled the room with hope. Happy tears ran down my cheeks feeling grateful that we chose to hope. 

 

If you’re interested to hear more of Clara’s inspiring story or to listen to her play the piano, you watch the full Youtube Video here.