The Secret Life of Cameron

Cameron loves visiting the park and trampolining.  His poor health over the years has led to lots of hospital stays, causing a huge strain on the family, but setting up a support network for families in similar circumstances been a huge help.

This is his story as told by his mum Carla.

Cameron was born with a rare genetic condition called Norrie Disease, which causes males to be born blind and suffer from progressive hearing loss. His deafblindness means he needs lots of adaptations to help enable him to access the world. He is non-verbal and has severe global delays alongside a metabolic condition that has resulted in a gastrostomy.

But Cameron is also fun sensory seeker who needs constant stimulation. His smile lights up a room and knowing he is happy is what gets us through each day. His favourite activities include swimming and trampolining and he loves visiting the park to play on the swings. He attends a specialist school two and a half days a week, where he receives therapies such as physio, rebound and hydro. It is important for us to include Cameron in family activities so he can someday gain independence. He has recently started to learn how to walk, and we love to celebrate all that he achieves rather than focus on the barriers he faces.

Cameron’s disabilities mean he requires one to one support at all times to keep him safe and promote his development. Unfortunately, because we get little support, this has a significant impact on our family life and on his two sisters, who sometimes miss out on activities that they love.

As a full time mum I’m often housebound, and don’t have enough hands to manage all my children’s needs. Even accessing public transport can be really difficult, with Cameron in a wheelchair and his baby sister in a pram. And, when we do go out, we avoid certain environments, because crowded places can lead to Cameron having a meltdown. This is because his severe multi-sensory impairment can mean that his senses can become overloaded.

toddler and mum smiling

We feel that raising awareness of the struggles families like us face will help increase public understanding and hopefully lead to improved care and support for disabled children.

We set up a Facebook page to promote awareness about Cameron’s disabilities. This has had a huge positive impact on our life as we have brought together a support network for families in similar circumstances. There, we can gain advice and support and also share our journey with people who are willing to learn about the things that affect our life and how best they can support children like Cameron.

We would like to see more services available in our area so families just like us don’t feel so alone and under such a strain. All our children deserve equal levels of care and attention.

This is the part of our life that most people simply do not see.

This is the Secret Life of Us.

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Katie, 7, has autism, which can affect how she plays. Over time, her family has learnt the rules of her game.

Eva writes to Katie about the puzzle of finding the right toys.

Dear Katie,

How long did those toys lay unused for, waiting for you in their boxes?

Months, sometimes years, as a reminder of our long journey.

When you were little, we spent Saturday afternoons in charity shops, trawling through mountains of toys. I wasn’t looking for the latest product; I was hunting for educational toys, games and board books. I was putting my faith in finding the right toy to help bridge that gap between your chronological and developmental age.

Autism is a spectrum as big as the sea. So, while your neurotypical peers galloped ahead, time seemed to stand still in our private universe. These toys represented an attempt to help you progress so we could get to our unknown destination.

But you were just not interested. You rejected baby dolls in favour of an empty pushchair (for sensory input). You tapped or scratched plastic food items. You scattered a sea of multi-colour hairbands and hairclips across the living room thousands of times.

katie smiling
Over time, you continued exploring an increasing number of toys and made your own choices, as we learnt the rules of your game. To let go of expectations.  To be led by you. To gently expand your interests. To be patient and realistic in our hopes, because you develop at your own pace.  To place you at the heart of our decisions.

Your most hated toy was a jigsaw puzzle. I remember putting a puzzle together on the floor, only for you to drive your pushchair wheels over it relentlessly, pulling the pieces apart.

And for many months, that was it.

Over time, the specialist school setting and one to one help made a significant difference to your development. Signs started to emerge in 2016; we played a simplified version of a board game, then another one. At age six, you were interested in visual games; memory stuff that you are good at; games that do not require many words.

One day I felt brave and took the puzzle box off the back of the cupboard.

The one that has photos of duck, apple, teddy bear and other objects that you recognise, because you love photos, rather than pictures.  I put two pieces on the floor near you, next to each other. I watched you move your hand towards them, making the pieces fit, patting them into place, with a lump on my throat.

That weekend we saw some developmental leaps. You cut through a piece of paper with scissors for the first time – despite your motor skills issues. You self-initiated taking yourself to the potty. You put on your ear defenders at church independently, because you realised you were struggling with the music from the band and tried to prevent an episode of sensory overload.

You are, more and more, finding your feet in the world. Along the way we are supporting you as best as we can, learning more about autism, negotiating difficulties together. Sometimes people don’t understand. They’re scared, judgemental, not willing to be taken out of their comfort zone. They are missing the incredible human being that you are. But we have surrounded ourselves with people who, near and far, are invested into our journey. There are people in the world who put being human at the centre of their lives; this gives me hope that your life as an adult will be as fulfilling and happy as possible.

There have been many bumps along the road, but whenever we fall, we will get up again and continue walking together.

This is the part of our life that most people simply do not see.

This is the Secret Life of Us.

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Rachel’s little boy didn’t breathe on delivery and was diagnosed ten weeks later with severe brain damage. From then, she and her husband hurtled down an unmarked road of loving a child with complex disabilities and life-limiting epilepsy.

This is Rachel’s story.

The crackling baby monitor pricks my consciousness awake. My own breathing stills as I strain to hear the faint breathing sounds of my 11-year old son. My body feels pinned to the mattress with a fatigue that comes from over a decade of interrupted sleep. It has been one of those nights. Four times the groaning cries of my son have catapulted me down the corridor with my eyes straining open only when I’m halfway to his room. Each time, I turned his body and repositioned his stiff limbs.

Other people’s voices often crowd my thoughts, and in the middle of the night it is the physiotherapist’s voice that comes to the forefront as I try to position my son in a way that will limit any distortion of his growing body. Eight times through the day I will hear the words of the half dozen doctors handling his care as I draw up a cocktail of syringes to manage his many diagnoses. I’ll check stock levels and expiry dates before contacting the local pharmacist, with whom I’m on first name terms.

Six times between 5:00am and 11:00pm I’ll remember the discussions with the school nurse, giving me his most recent weight. I’ll recall the instructions of the dietitian and the direction of the company rep. Throughout the day and night I’ll set up the specialist pump to give him all the food and fluids needed to keep him alive via his PEG tube.

Over a dozen times a day I’ll hear the words of the occupational therapists, from social care and health, as I hoist my growing son into his toilet seat, stander or specialist comfy chair. And I’ll hear the groans of my own aching back from a decade of lifting more than I should. I’ll remember the words of the local authority telling me they won’t fund a hoist in the living room because it isn’t important enough for my son to join the rest of his family snuggled on the sofa.

I’ll feel disheartened at having to fight for help that I don’t want to need and I’ll hear the kind words of the community palliative care nurse who provides four hours respite a month. I’ll consider whether to pen another complaint email because the hours provided have been slashed and service may be taken away completely. I will agonise over the words of the hospice nurses who have discussed what will happen when my son dies, as he isn’t expected to live to adulthood.

I’ll grow angry at the many thoughtless words from professionals as they underestimate the impact of caring for my son. I’ll feel overwhelmed by need to contact over fifty practitioners about my son’s needs. And I’ll marvel at the dedication and heart of the team of people who often go the extra mile.

The gentle sigh of my boy filters through the monitor and I glance at the clock. 5:45am, maybe I can get another half hour sleep. A moment later, I hear the moans again and slide on my slippers. It’s 6:30am when I sneak into my son’s warm dark room.

“Good morning gorgeous boy.” I soothe, as I kiss my favourite cheek in the whole world.

My son opens his eyes but I know he can’t see me. His face breaks into a huge smile of recognition and slowly his lips purse into a kiss.

“Would you like to get up?” I ask.

“Mmmmm,” comes the response.

A vague noise to many but a thousand words to me.

And so the day begins. A day of loving, of smiles, tears and laughter. A day of ordinary and extraordinary, a day of feeling misunderstood and finding solace in my tribe. Of hard work and frustration, of tasks and satisfaction. A day living out my toughest job and greatest joy: being the parent of a child with severe and complex needs.

These voices form a part of our life that most people simply do not see.

This is a glimpse into the Secret Life of Us.

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Muhammad Yahya is three, and lives in Keighley with his parents and his three big brothers. He was born with spina bifida, hydrocephalus and talipes, and had a shunt inserted as an infant.

This is his story, as told by his dad, Shazad.

“We were told at my wife’s twenty-week scan that our baby would have this condition, and we were advised to terminate the pregnancy, because he was going to be severely disabled. It was all so negative, at each point when we had a scan or an appointment, there was no mention of any positives or any hope. But he was born, and he’s our son and we absolutely love him.”

Muhammad Yahya is a smiley little boy who loves Peppa Pig, his trampoline, and playing outside with his older brothers. “Despite his condition and all the surgery and hospital appointments, he’s got a really cheeky little personality. He keeps us on our toes!” Shazad said. “He’s a blessing, he’s absolutely changed our lives. He’s like a little light in the house, there is always a smile on his face. As parents, we want to give him the best opportunities that we possibly can, just like our other children. We always try to find a way of doing things that allows him to join in. He’s got so much confidence as a result, we encourage him to do his own thing and be himself.”

child playing drums

However, the family face challenges as a result of raising a disabled child. “I think there are significant barriers, for families like us, especially in terms of access to the equipment that he needs. There are charities which can help with funding but I feel we shouldn’t have to do that, the financial pressures of having a disabled child are huge and there are companies who make the equipment that we need for our son, who take advantage of the situation.” Recently, the family had to apply for charitable funding for a specialist buggy for their son, as wheelchair services could only supply a wheelchair or a buggy, and not both.

The family have also had to battle to secure Muhammad Yahya a place in a mainstream education setting. “We felt pressured into special education but we feel that he would thrive much better in mainstream education. We do our best for our son and try to make sure that he can do everything he wants to do. But there are certainly barriers that he faces, that other children don’t, and most people don’t even realise that these barriers exist.”

This is the part of our life that most people simply do not see.

This is the Secret Life of Us.

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