This page in our Guest Blog is dedicated to our friend Non. Non has a different story but one which resonates closely with parents whose children have additional needs. Here Non talks about her journey after her beautiful Tom was diagnosed with Tourette’s syndrome and Autism amongst others in the long list
Why I decided to write- by NonMy inspirational friend, Caroline, asked me to share a few words and thoughts as a ‘guest blogger’ for her Harry’s Hat Charity. He of the cobalt blue eyes, blonde curls and beaming smile fame – what a little heartbreaker!
As a mum of a 14 year old son with hidden disabilities, I wanted to share the ‘Welcome to Holland’ story with those of you who may have just arrived some place you weren’t expecting to visit or stay. Our journey was very different from Caroline’s family in that we thought we were heading for Italy with everyone else for 10 years and then we hit turbulence and had to divert to Holland.
My beautiful ‘baby’ suffered a catastrophic mental breakdown and was hospitalised at the age of 10. There followed years of tests: educational, psychiatric, neurological, physical and lots of medication and therapies and lots of battles for support for our son. He was diagnosed with Tourette’s syndrome and Autism amongst others in the long list. He never returned to ‘mainstream education’.
So, we have waved goodbye to Italy and the travels we had planned with our family and have learnt to embrace Holland instead. It takes time to get to a place of acceptance so be patient and allow yourself the regrets before you begin to appreciate the tulips!
EggsWhat is a great achievement and What does it mean to you?
My youngest son, Mathew, achieved his junior open water PADI scuba diving qualification this week at just 12 years old. This is quite an achievement when you consider that he broke his collarbone a couple of weeks before his first pool session! He finally braved the murky waters of a local reservoir descending over 6 metres into its depth to explore the hidden wrecks and dodge the ‘scary, slimy fish’. This was, naturally, all captured on camera and duly shared on social media. He has received so many well-deserved congratulatory ‘likes’ and I am one proud, slightly smug mum!
Today, I received an email from one of the teachers at his older brother’s school sharing this, equally, amazing achievement:
“Tom cracked and separated an egg today!! With gloves of course. He said he had never even held an egg before. Wish I had a picture.”
To put this into context, Tom suffered a huge anaphylactic response to egg as a baby which left him unconscious in hospital. Tests revealed that he had a life-threatening allergy to all food products containing egg. Ten years on and Tom’s anxiety resulted in another hospital stay and a catastrophic mental breakdown. His fear of contamination led to obsessive checking of all food and raw hands from constantly scrubbing them to remove germs. Eating petrified him.
After many years of therapy and medication, Tom was finally able to undertake an ‘egg challenge’ this year. Five hours and one muffin later, he was overjoyed at the news that he could eat cake! He must still avoid raw and loosely cooked egg.
So, you can understand why I choked up when I received the message from school today. There were no photos to capture this moment, no social media posts and messages of congratulations but there is one proud, slightly emotional mum!
Both my boys have faced their fear and taken their own leap of faith into the unknown. Both equally deserving of huge congratulations and pride in these great achievements. Time to celebrate!
The Kindness of Strangers
The kind strangers who we meet on life’s journey really do make a difference. This story is for you, with thanks.
Travelling with children with hidden disabilities can present many challenges, not least of which is the lack of empathy and tolerance from fellow travellers. As the mother of a 14-year old son with neurodevelopmental difficulties including Tourette’s Syndrome, my family have endured the tutting, the stares, the awkward glances and even, on one occasion, the “can you stop him making those noises?” Painful reactions for adults to witness, devastating for our children to endure.
But, travel we will! New challenges enable self-esteem and resilience to flourish and we all have a right to enjoy these experiences.
This is how we found ourselves, 4 mums and 8 children, escaping a sweltering hot London Euston in the summer of 2018 on board the Caledonian Sleeper train to Scotland to climb Ben Nevis. We felt as if we had stepped into the pages of an Enid Blyton novel bound for exciting adventures in the country! We were all proud to reach the peak of the British Isles: “Mum, are we the highest people in the world?”. We certainly felt like it!
All too soon, it was time to step out of the storybook and head back to reality. We arrived at Fort Willian train station in the early evening looking forward to enjoying our well-earned beds for the night. Alas, it was not to be! We eventually left the station at 11pm on a 4 hour ‘bus replacement service’ through Glen Coe to Edinburgh station to board the ill-fated sleeper train. This was frustrating for all of us, obviously, but it was the final straw for my Autistic son – one challenge to far.
It could have been a disastrous situation. But it wasn’t. Thanks to the kindness of a stranger.
I had explained our situation to one of the stewards as soon as we were informed of a possible delay. He didn’t tut or judge. Instead, he offered us a quiet space to wait away from staring eyes and kept us informed as much as possible. He offered us understanding and empathy.
He did not travel with us on the nausea inducing coach and we finally boarded our train at Edinburgh station at 3am. My sons were asleep immediately but as I lay awake waiting for us to depart, I heard a familiar voice on the platform: “Have the mums and their children from Fort William been berthed? There was one particularly anxious young boy. Is he OK?” It was the voice of the steward who had finished his shift but still went out of his way to check on us. I was so tired, relieved and touched by his kindness that I couldn’t help the silent tears which slipped out in the darkness. He had no idea that I had overheard the conversation.
Once safely home, I wanted to let this stranger know how much his kindness had meant to us, so I wrote a card. I only had a first name and I knew that he worked from Fort William on the Caledonian Sleeper train so I addressed it thus and posted it hoping it would reach him!
A year on, summer 2019, and it was the ‘dads and sons’ turn to embark on their epic adventure to Scotland on board the Caledonian Sleeper to Inverness. Their challenge was to cycle the 75 miles of the ‘Great Glen Way’ to Fort William over 3 days. They did it -wow! Weary and saddle sore, they found themselves at the station in the early evening looking forward to a well-earned rest in their bunk berths for the night. Unlike 12 months previously, there were no delays!
As they were boarding my son spotted a familiar face:
“Dad, that’s the guard who helped me last year!”.
They went over and my son asked him:
“Do you remember me?”.
The steward’s face lit up and he reached into the pocket of his uniform blazer. He pulled out a familiar card and said:
“Of course! I carry your card with me always. When I’m having a bad day or dealing with difficult customers, it reminds me of the real reason for helping people. It reminds me that I can make a difference.”
What can I say? When I am feeling that the world is against us then I remember these trips and I remember the kindness of strangers.
Thank you, wherever you are.
Behind Closed Doors…
“And she finally gave up, dropped the fake smile as a tear ran down her cheek and she whispered to herself “I can’t do this anymore”
We are all very familiar with the notion of our ‘public face’ and the pressure we put on ourselves to project an image to the outside world and especially to our ‘virtual’ social media world. We are capable, strong, organised and in control: tidy houses, healthy lifestyles, diligent children and happy families.
I’m sure that I’m not the only one who wears her smile in the street and stores it away safely when alone behind the security of a closed front door? I am positive that I am not the only mum of a child with disabilities who feels like this. If I am mistaken in this belief, then all advice welcome please!
I witnessed a very real and painful illustration of the strength needed by parents to maintain this public face whilst at a recent visit to Great Ormond Street Hospital with my 14-year-old son. We had waited eight very difficult months for the appointment with the Neurology and Psychiatric Team. We had answered questionnaires, sent ahead 5 years’ worth of medical notes and background information and desperately hoped that we may finally have some answers, some help, some meaningful support.
An early start, 2 hours of travel and finally the call into the consulting room. Two professionals greet us. Two seats for us set in the middle of a vast clinical space. No small talk, no settling in. Two hours of questions and more questions. Prizing open closed doors of the mind and the heart. Forcing open the closed doors of family life and wrestling open the history of decades of ‘faulty’ ancestors. Exhausting interrogation.
Then, suddenly, a closed door: “Mum, could you wait outside whilst we speak to your son alone about his dark thoughts”. Sitting in the stark, glaringly lit corridor staring at the closed door. What was going on in there? What was going on inside my son’s head? Why the pain?
Questions done. Could we both wait outside the closed door. We had done all we could to beg for help. Finally, the call back in and a ruthless delivery of the verdict. Label after label, this behaviour, that behaviour, medication, training, courses, more referrals. It all swirls into an overwhelming sea of sounds and I can feel myself drowning, gasping for air. I need to be alone.
We thank and we leave. We step into the cold lift. Another mother and son step in behind us and the doors slowly slide shut. The mother begins to sob, shaking with emotion. I put my hand silently on her arm and she turns to me: “It is so hard. The fight is so long and so hard. It never stops”. “I know”, I replied.
Then the lift stops and we both take a deep breath and put on our ‘smiles’. The doors open. Time to face the world again.
Isolation and Solitude“Stop all the clocks, cut off the telephone…”
Shock, disbelief, denial, panic, fear and finally, reluctant acceptance.
A week into national lockdown and I’m sure that we can all identify with one or more of these emotions. The world as we know it stopped turning with no warning. How are we supposed to feel?
I listened, as the nation did, to the unfolding horror of the COVID-19 pandemic and heard the words ‘lockdown’ and ‘ceasing of normal daily activities’ and I felt panic. I had been here before, and I knew what lay ahead. I was thrown back five years to a moment in my family’s life when everything changed for ever and life would never be the same again.
September 2015, year 6, week 1: My 10-year old son is looking forward to his final year at his junior school and moving on with his friends to ‘big school’. Exciting times lie ahead including graduation, leaver parties and a final residential trip.
September 2015, year 6, week 2: My 10-year old son is admitted to hospital, sedated, anaesthetised and undergoes test after test for physical and organic brain damage. A week later, we are told that he has suffered a catastrophic mental breakdown. A month later we are told that he has severe Tourette’s Syndrome and he will never return to mainstream education. No graduations, leaver parties and no final residential trip.
Just like that. No warning. My son became a prisoner to his anxiety in a self-imposed lockdown. All normal daily life ceased for him. The difference to our current national lockdown being that life carried on for those around him. His friends went to school, socialised, sat their SATS tests and graduated. Families posted proud ‘smart new uniform, first day at secondary school’ photos on social media.
We felt as if we were caught on a slow-motion treadmill, going nowhere, whilst everyone around us hurried on with their lives. A strange detachment and isolation set in as we could no longer share and relate with our peer group. Day by day, this way of life became our new normal which we eventually accepted.
“Let there be spaces in your togetherness … For the pillars of the temple stand apart, And the oak tree and the cypress grow not in each other’s shadow.”
I grappled with two very conflicting emotions in the years which followed when life was ‘on-hold’ for us. For me, it was both the enforced isolation and the lack of solitude which became a constant balancing act.
My son and I were cocooned in a virtual safe world to enable his jarred mind to rest and recover. He was my constant companion and his emotional well-being depended on mine. He needed to borrow from my reserves whilst he built up his own armoury to enable him to step back out into the real world from which we were hiding. Isolation.
There were days when my reserves were low, very low. Nights when I needed to switch off and not think about our next hospital appointment, medication, therapy, the future. Times when I needed to recharge and calm my frazzled brain. Moments when I just needed to be me. Alone. Solitude.
Isolation and solitude. In the coming weeks and months, we will all be striving for this balance. Those living alone will need to find inner strength in the face of isolation and those in busy households or on the front-line will be looking for inner peace in the absence of silent solitude. These skills have been overlooked in our usual hectic lives and only you have the power to achieve your own unique balance.