My name is Will Hare. I am 11 years old and this is the beginning of my journey, living a life that most thought impossible.
With a diagnosis that terminated my development in life before it had begun you can see how a Mothers instinct should never be doubted.
Mum is my constant, here through thick and thin, and she understands me the best that anyone can. My story highlights the unique bond and instinct between Mother and child that runs far deeper than any medical diagnosis or prognosis.
So, this is how it started, I mean how it really started.
For Mum, the diagnosis was the day she was to hear the words she had been dreading, or maybe expecting, perhaps avoiding, I don’t know. In the grand scheme of things, that day meant everything to my Mum until it came, and it meant nothing the minute it was over.
“I think Will might be a bit delayed, not surprising given his prematurity” Mum opens up to Dad. They both assumed I’ll catch up. I don’t, in fact the gap between me and my age-related expectations grows bigger. At 18 months, I can’t crawl, or walk, or even utter any words, not even responding to my own name. The most I can do is a piercing scream when I’m not happy, which seems like most of the time. I am frustrated. I am trapped in my own body. Yet despite my problems Mum can see that given the slightest relief from my torment I am affectionate.
There are dozens of moments of blinding, excruciating hope when I seem normal and Mum questions her own thinking. In spite of those moments, Mum stands in the hall during a point of desperation one day and utters the words out loud “I think there is something wrong“.
“At 18 months, I can’t crawl, or walk, or even utter any words, not even responding to my own name. The most I can do is a piercing scream when I’m not happy, which seems like most of the time. I am frustrated. I am trapped in my own body.”
If you are lucky, the person you say it to listens, asks questions, passes no judgement, respects your instinct and refers you in the right direction. If you’re not, you’ll say these words a hundred thousand times before anyone takes you seriously. In either case be prepared.
Mum’s sanity was under scrutiny for a period of time. Parents, in-laws, siblings, friends, neighbours, even health professionals, everyone suddenly has an opinion and judgement on me and Mum’s parenting skills. Labelling me everything from a lazy boy to needing more discipline.
The world stopped for Mum that day in the hall, the day she started to believe something might not be right. But she didn’t notice that the world had stopped, because for this period of time she ate, slept and breathed the words she was waiting for. Validation will never cut as deep as it does the day a medical expert not only finally agrees with you but also confirms worse things than you ever imagined.
For the days that followed and probably the weeks and months beyond that, Mum was in fact starting from nothing all over again. She had a nagging sensation that every day things should be familiar to her but they weren’t. Her head was in a spin, and constantly hurt day and night.
Friends that had been by Mum’s side enjoying good times and creating memories well before I came along suddenly disappeared.
Life was the loneliest she could ever imagine. With Dad working away most of the week, self -blame plagues her mind for years, that she has caused this situation somehow.
My diagnosis day was important, or so Mum had been told “with no diagnosis there is no prognosis”. I am 2 years and 2 months old, and still not achieving any milestones apart from crawling backwards. We arrive early after travelling 30 miles for the meeting that changed our lives forever. After a short wait we are ushered into a consulting room, three paediatric consultants meet us, they have medical reports and facts from health professionals that have referred us. Mum remembers the agonising realisation that these individuals were going to define the rest of my life that very day.
“Oh, look Will, look at all these bricks, do you want to play with them?” Coloured building blocks covered the small area where I sat supported by cushions. One consultant started to build with the blocks, that was not meant to happen, I had it all figured out. I let out a piercing scream to show my dismay. I aggressively knocked down all the bricks they had built and threw my head on the floor screaming and kicking. Predictably Mum knew exactly what to do, it was a routine she regularly executed to perfection.
“My diagnosis day was important, or so Mum had been told ‘with no diagnosis there is no prognosis’.”
“Will, look here is a tea set, shall we have a cup of tea”? Replacing the coloured bricks was now a full play tea set including cups, saucers, milk and teapot. I have never played with toys, they are of no interest to me, neither is pretend play. Instead I decide that it is more acceptable to see how many teacups and saucers I can stack on top of each other. They fall without my permission. Mum knew the consequences the moment they started to topple. The same meltdown and piercing screams that had filled the room only moments earlier.
“Oh, who loves a bunny”? A remote-control bunny comes to sit next to me. I am given the remote control with two levers, forward and back. My gross and fine motor controls are so delayed there is no possibility I can control the bunny, nor do I have any interest to. Watching the bunny walk towards me causes a regulatory flapping while my Central Nervous System copes with the excitement arousal levels. My interaction with the whole meeting ceases and I need to rest.
My frustration and tiredness are communicated by a piercing sustained scream. Within 45 minutes of talking to Mum and the subsequent three activities the decision has been reached. My life is to be defined by less than one hour spent with me.
“It is quite apparent Mrs Hare, that Will has significant needs, we would diagnose this formally as Very Severe Cognitive Impairment.”
What then followed ran so deep through Mum that she was unable to talk.
A chart was drawn showing actual age v mental age. “When Will is 13 years old he will have the mental age of a 2-year-old. This will not increase beyond this point. He will not get better. We will ensure from today that we make contact with support mechanisms to help you through this period and beyond. He will always need care.”
And just like that, my life is terminated before it has really begun. Within an hour, total strangers that have never seen me before label me with a condition that means I will remain trapped in my own body for the rest of my life.
“When Will is 13 years old he will have the mental age of a 2-year-old. This will not increase beyond this point. He will not get better.”
After a brief period of tears and feeling desperately lost in her own life Mum drove us home focused on one thing, to find out my fate. The fire within Mum was lit the moment we got through the door. She was relentless in her quest to find answers. Questioning every doctor, we met and how they could be so sure of my diagnosis earnt her the reputation of a “neurotic mother” with many.
Mum reads every publication fiendishly about premature babies, cognitive impairment, sensory processing, cerebral palsy, and autism and what it means for my future. The coming weeks Mum feels the diagnosis isn’t accurate, yes there is something different about me for sure, she is the first to admit that – but she is certain they have misdiagnosed. After three relentless months and countless books later, she finds descriptions of children like me in a book by Sally Goddard Blythe, ‘Reflexes, Learning and Behaviour.’ Mum feels hope for the first time in almost 30 months. The same evening in the early hours she sends off a long description of me to Goddard’s Institute for Neurophysiological Psychology.
By now I was obsessive beyond comprehension, opening and closing every door for hours, moving around furniture as though I couldn’t see 3D images. Anywhere outside of my normal environment would mean I was unable to process new stimuli; at the park I don’t go on any equipment I am just fixated on the railings surrounding the park. My ears would hurt with any noise whether it be traffic or running baths.
When I eventually walk, it is on tiptoes, an action seen in children with developmental problems – the persistence of the primitive ‘plantar’ reflex. I am so uncoordinated from low muscle tonus; I can’t hold a crayon or a spoon. Unable to speak yet so overwhelmed, I have a horrible way of discharging my emotions, by biting my own stomach and drawing blood. Afterwards I am calmer, it is a release.
Within days Mum is contacted by Dr Peter Blythe, the neuropsychologist who had set up the institute. Mum was to take video recordings of me since birth to a meeting with him the following week. Mum questioned during the appointment whether there is anyone in UK who can help. “No. There is only one man who can help Will. And that man is in Toronto.”
My nonverbal two-way communication with others tells Paul that I appreciate that other people have minds; but I do display the peripheral symptoms of autism, such as tiptoe walking and hypersensitivities.
A leap of faith, or the only shining light, Mum isn’t sure but 3 weeks later we are on a flight to Canada. What she does know is if it makes 1% difference to my life it is worth it. I am almost three years old and I still have no words. I can’t sleep, I walk everywhere on tiptoes, I am constantly frustrated and in perpetual motion. Paul Madaule examines me on arrival in Toronto, and he is confident that my problems are mainly neurological, specifically related to the vestibular and how it relates to the relevant brain areas that process balance. My nonverbal two-way communication with others tells Paul that I appreciate that other people have minds; but I do display the peripheral symptoms of autism, such as tiptoe walking and hypersensitivities.
Paul’s feeling is that the UK diagnosis is true as far as it goes – part of my brain may be “unrepairable” – but that diagnosis doesn’t define which symptoms are based on brain cell death, and which are on Global Development Delay. But because Paul knows the brain is neuroplastic, his approach is “Let’s stimulate Will’s brain and see what happens.”
Next month I will be writing about the treatment I received which changed my life for ever.
Love Will 🧡 xx
Discussion about this post