This is the second part of my story and taken directly from the diary that was kept during the therapy that changed my life forever. (Read part 1 here.)
We woke to snow, quite unusual for mid-April, even in Toronto. Dad was pleased it was snowing this morning, as he felt the noticeable change in the weather signified a change in my life and it would all start today. We head to The Listening Centre, Toronto which would become my home for the next 17 days.
The headphones and I very quickly have a love hate relationship; I love what I hear through them but hate wearing them. Mum puts a pair on and starts to dance so I thought there must be something worth listening to and curiosity gets the better of me. Paul tells Mum that we should start to see a difference and change within five days.
“Extreme Premature birth (like mine) imposes a sudden, often unexpected interruption of the mother-child dialogue. I was cut off far too early from the sensory stimulation provided in the womb, so critical for my future motor and language development.”
The incubator I lived in for 8 weeks is sort of a sterile “bubble” that not only deprived me of sensory stimulation, but also isolated me at the very time I needed the physical and emotional nearness of my Mum. New incubators (not like mine) are now equipped with loudspeakers transmitting pre-recorded heartbeat sounds to stimulate the environment in the womb because of this very reason.
If only all hospital Neonatal Departments could use recordings of the Mum’s voice in the incubator to compensate for the missing sensory stimulation and interrupted mother-child dialogue. Who knows what may happen in the future – such a simple intervention that could make such massive differences to the lives of so many?
“I start to receive the “passive” phase of therapy (first part) which recreates the prenatal environment by means of sounds rich in high frequencies – these sounds are combinations of my Mum’s voice, Mozart and the Gregorian Chant.”
Mum’s voice filtered like it is, takes me back to the womb, building a bridge between that world and the one after birth. Paul says children’s’ reactions to their mum’s voice can be extraordinary to watch.
Autistic children become more affectionate, those who are distant start kissing, hugging and embracing. Hyper children become calm and show more control, then the calm and the tired children start attention seeking and running about – all of the children start to speak a-lot more.
The mothers voice recording has become a part of the passive phase of Pauls’ sound stimulation program for many years. Children who can’t talk or who tend to be oblivious to communication react very well to the filtered mother’s voice. They start babbling more, then break into high pitched screams for many days. Then eventually after a short time words come – sometimes for the first time in their life. It is as if the filtered sound of the mother’s voice increases their desire to be born to a world where sound and language are a means of communication. It seems to pave the way to a development of language. The mother’s voice is more than an emotional nutrient and a source of vital energy for the unborn child.
“The mother’s voice is more than an emotional nutrient and a source of vital energy for the unborn child.”
Within 4 days I speak my first word ‘Lion’ as I put pieces of what has become my favourite jigsaw into place. Mum feels there is some connection with this ‘unusual’ first word and the bravery I have displayed since birth. I do enjoy my therapy it is calming and surprisingly relaxing.
Listening to Mum’s voice is intriguing, it sounds like Mum after intaking a helium balloon, it replicates the voice I would hear in the womb. I don’t instantly recognise it as Mum but it is familiar to me and I keep uttering “Mama Mama Mama.”
In the days that follow I continue with my second word “singing” as I am in the bath and simply want entertainment.Not your average first words, but my language is already developed within the brain, the brain and the body can’t work together for me to outwardly communicate. Paul Madaule could see what others couldn’t, he knew he can unlock me.
Mum and Dad think the changes they have seen so far are nothing short of a miracle, Paul’s response is simple; “it’s not a miracle it’s a method to help unlock the brain and bodies full potential”.
My imbalanced vestibular makes me unstable in my own body.
Paul describes my life as ‘trying to carry on doing normal activities of life on a rocking boat in a most unpredictable sea’. Paul’s first thought for me is ‘let’s get him off this rocking boat first, then we will see what else is left that needs fixing.’ The way I look at things is what would happen if you wanted to take pictures on the deck of the rocking boat? Yes, of course it would be possible, but it would take a great deal of concentration, most of the pictures would be out of focus and badly centred.
This is how life is for me. Language and learning are similar to taking pictures or filming. I need to take correct aim in time and space at the relevant information, to focus and to attune well.
Within days of therapy starting, I can sit still for a few minutes for the first time ever without feeling the need to keep moving. I can actually hold and grip a crayon in my hand and scribble on paper, from the delight on Mum’s face you would think it was a Picasso work of art, it will be treasured for years.
“Not only can I cope with the sound of running water without screaming and covering my ears, I am now running the bath every night and so delighted that it causes me no pain.”
I can sleep at night without the need to keep waking for sensory stimulation. My appetite has increased (I didn’t think that was possible 😋). My co-ordination is much better. I know where my body is in space. I no longer turn cars over and spin the wheels, I play with them as they were intended on the floor.
I no longer feel the need to keep opening and closing every door and cupboard wherever I go or switching on and off every light switch continuously, in-fact I just don’t really notice doors and switches anymore except for the purpose they were made for.
For the first time ever, I can use the park instead of running around trying to escape from it or running up and down the railings, I notice the swings and slide and actively want to have a turn. Public toilets no longer cause me any anxiety, I don’t even notice the hand driers. I still don’t notice other children but they no longer distress me. For the first time in Mum’s life she can see snippets of hope, hope that one day I will have a role in society.
Mum and Dad notice my biggest change is not in words but in behaviour.
“I don’t crave the need for constant movement, my vestibular (the sensory system that provides the leading contribution about movement and sense of balance) is now stabilising and I am able to regulate my body far better. I am able to sit down now for short lengths of time like other children, an experience that is new to me.”
It feels good and is making a substantial difference to my life. My vision is fine, but my out of sync body and vestibular sense made me see stationary things as moving, especially when I ran past them or walked around them, this was fun but also very confusing for me and added to life on my “rocking boat.” For the last two days nothing has moved for me, this is another part of my body and brain stabilising through therapy.
After the 15 days of therapy, I take a 6 week rest period back in UK for the brain and central nervous system to catch up and absorb all the therapy, in this time more changes happen, and before we have time to think we are back on a plane to Toronto for the second phase of therapy.
By the first day of therapy some 6 weeks later the weather has changed considerably, the sun is beating down and temperatures rise seeing the snowsuits turn to shorts. Quite remarkable the difference in six weeks – a little bit like me, I can’t help but feel.
By day 9 of the second phase of therapy I have over 80 words and can connect three words together.
Within the two days that follow I start drawing with my left hand, I was very right dominant, but in order to have bi-lateral coordination and control it is important for children to explore with both sides of the body. Above everything else my life is so much less frustrating. I am finally at ease in my own body, I am no longer trapped and the feeling of release is so wonderful. For the first time in my life I understand others and they understand me.
As Mum watches me during therapy she can’t help but wonder what the Consultant Paediatrician would say now? My future was left to chance, a chance meeting between Mum and the late Dr Peter Blythe. If my time was now, there would be no meeting to be held.
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