Becoming a parent to a disabled child can sometimes mean the future we envisaged looks different. Things may look physically different if our children need special equipment. For us this was a gradual process and one which took some adjusting to.

Our little girl has severe epilepsy and a severe learning disability. On the face of it you may wonder what equipment she needs. Despite not needing as much equipment as many other families, we do have more than I could have imagined.

Here’s what we currently have; two special needs buggies, a helmet which she wears all of the time, a special feeding chair so her head is less likely to fling back during a seizure, a special bed that she can be zipped in to so she does not get out and have a seizure in the night, a drop harness for when her seizures are so frequent she needs to be held up, a heart rate monitor for focal seizures, a bed monitor for tonic clonics (her main type) and a Vagus Nerve Stimulator magnet.

It’s quite a list, especially when all of it (apart from the buggy) is for epilepsy.

Equipment suddenly invading your personal living space is difficult. For us it felt frightening, alien and most of all, I felt sad that we needed it. Without doubt the helmet was the hardest thing to adjust to.

It suddenly and clearly marked my daughter out as being ‘disabled’. It brings with it stares, questions and sometimes looks of confusion from others.

We started off having to use a bike helmet as she was suffering hundreds of drop seizures a day during Covid and the services simply switched off.

She now has a ‘proper’ helmet that she wears all the time.

At first my heart hurt every time I glanced at her wearing it. Now it feels part of her, and something that is there to help and to protect her. A friendly adaptation. We were brutally reminded of this last week when we, due to complacency, went to the supermarket without it (we’d had an unprecedented run of a few weeks without a daytime seizure). She refused to sit in the Firefly trolley and then had a big tonic clonic, hitting her head on the stone floor.  

We have always been adamant that we want the ‘best looking’ equipment possible. It is about dignity and having a right to express some style and personality where possible. It matters to me that my daughter’s helmet is colour we like and does not look grubby.

One brand of helmets simply make theirs in bright red and royal blue (both colours on one helmet). This makes me cross as I cannot imagine that many kids, or adults for that matter would choose this colour combination in clothing. It suggests the design is going for practicality and ‘bit of colour’ and that the makers have not consulted with people who need to use it.

It’s a good helmet in a soft fabric, but It feels like very little thought has been given to the fact that a child will need to wear the helmet day in day out.

Some children may love it or not care, others may be less keen.

The helmet my daughter has comes in three basic colours including black, so you can at least have an option. It’s still a very basic nod to style though. We have some cat motifs to sew on to her new one (which we have been waiting almost a year for) to customise it.

Professionals and designers must recognise the emotional impact that equipment can have on a child and family. I realise budgets play a part, but consultation with families and small colour adaptations for example, should not cost a great deal more.

It’s heartening to see the Firefly equipment in on-trend colours with clear thought having gone into the design (just look at the Upsee; I’d be going for the denim / rainbow combo). The difference this thought makes is far from just cosmetic, it has the power to shift emotions and ultimately make for a more contented family.

PS. Fancy designing an epilepsy helmet, Firefly?!      

When Jenson was born, it was all about what he couldn’t do.  Doubt was placed on whether he would even walk, and therefore we didn’t allow ourselves to consider the idea of him riding a bike. 

We could tell from an early age that Jenson was an energetic and active boy who loved anything with wheels, especially if he was riding in or on it.  As the first few months and years went on, we spent a crazy amount of money on ‘ride-on’ vehicles, trying to find ones that worked for his unique needs. 

We would be known to push them along with a broom handle because Jenson was unable to propel them with his feet.  We had friends even make padded cushions so that he could reach the floor comfortably rather than have his gangly legs all squashed up, because the vehicles were designed for infants much smaller and younger than him.

The day that Jenson first mobilised himself (backwards!) in his Granny’s kitchen on a Mickey Mouse truck will stay with me forever; I think he was about two-and-a-half.

When Daddy randomly came home with an Early Rider balance bike instead of a pint of milk one day when Jenson was about four, I was both bemused and cross. 

I had subconsciously programmed myself to have low expectations for key milestones for Jenson, probably to avoid any inevitable disappointment, so the concept of a two-wheeled upright vehicle was unfathomable to me. 

Fast forward about six weeks, and Jenson was riding said balance bike, admittedly in a very unstable fashion, but it was a monumental point in time for all of us.

Early Rider, who had been following Jenson’s unorthodox progress on their wonderfully engineered instruments, amazingly gifted Jenson a bespoke, one-of-a-kind balance bike, on his sixth birthday.  This meant that he could continue his love of ‘riding’, having out-grown all shop-bought balance bikes due to his age and height.

This act of kindness was one in a series of similar events to unfold in the next few years…..

Two years’ later, Jenson had reconditioned our mindsets that he CAN and WILL achieve what he sets his heart on, and we dared to allow ourselves to believe that Jenson MAY be able to attempt pedals!  It blew us away that once again, Early Rider gifted Jenson another customised bike, this one with pedals!

(Single rear disc brake, single-geared belt-chain, crank-set removed, upright handlebars – for those who know bike lingo). Jenson took ownership of that bike on Christmas Day 2020, and took his first solo pedals that same day.

It was an incredible moment for us. 

Jenson’s brother, Coby, was four at the time, and starting to develop his own love of riding bikes, in particular BMX biking.  He had joined his local BMX club and was learning to ride the track.  Jenson delighted in watching his brother tackle the huge jumps and navigate the tight corners.  We have made some lovely friends in the BMX community and unbelievably, at the age of ten, Jenson is now riding the whole track independently, much to my horror!

We made friends with a particularly wonderful family through Coby’s BMX career.  Sisters Esme and Charlotte are keen and talented BMX riders and perform at a high level at club and regional division.  When we have met up outside of BMX, both girls have showed such beautiful kindness, patience and warmth towards Jenson. 

Older sister Esme, at age 11, after a brilliant year of competing around the country, had recently been selected to represent the UK in the BMX World Championships in Glasgow.  Hearing that Jenson had now outgrown his Early Rider BMX-style bike, Esme approached her mum and dad with absolutely no prompting whatsoever, and suggested that she would like to gift her BMX bike to Jenson.  She was certain that it was what she wanted to do and was keen to ‘present’ it to Jenson!

As a bike connoisseur, Esme was well-placed to know that her bike would make a perfect fit for Jenson’s dimensions and needs.

So it came to be, that we all met up again, and Esme and Charlotte surprised Jenson with a new bike! We were all delighted that it was a perfect fit, and Jenson took to his new bike wonderfully.  This selfless act has meant that Jenson can continue his love of independent and safe bike riding, while we can continue to enjoy family bike rides together.

Yesterday, our family sat and watched Esme on the TV in the most important day of her life, competing at the World Championships in Glasgow.  We were overcome with joy and emotion as we watched her formidable performances in the heats, qualifying for the semi-finals! She made us, her family, and the UK proud as she finished in the top 16 in the world.  What a champion!

We are so humbled to be a small part of this fabulous young lady’s journey.  To have been gifted a bike by a World BMX rider is incredible but to be able to call this true hero a friend, is even more amazing.

Well done Esme, you are a star.  And thank you Early Rider once again for your incredible kindness.

A More Accessible World

I never realized how inaccessible our world truly was until I became a mom.

I was CLUELESS. Blissfully unaware of the many struggles that individuals with disabilities face, I ignorantly took much for granted. I had no idea of the frustrations and injustices that people all around me were up against daily. Sadly, I just didn’t see it…until it was placed right in front of me.

Exclusion. “The act of not allowing someone or something to take part in an activity or to enter a place” is all too common in our society. When we exclude, whether intentionally or not, we are letting valuable members of our communities down. In leaving them out, we all miss out.

It’s unfair and we can do better. We must do better. This notion that was once a distant idea to me is now in the forefront of my mind. I see it every day. As a mom, and an advocate for my children, I’m driven to push for change; I am compelled to be loud about making ours a more accessible world.

When we deny individuals the ability to safely exit a vehicle or when we fail to provide access to bathrooms designed to accommodate the needs of ALL people, we are actively excluding. These are just two instances that I’ve encountered this week, with my daughter, who has multiple disabilities.

When buildings lack the means for wheelchair users to enter, and recreational activities are not adapted to welcome children with autism, we are not being inclusive.

Physical and social barriers standing in the way must be torn down.

Schools and other community establishments have come a long way; but not quite far enough.

Thankfully, as more people are raising their voices, the world is starting to listen.

Retail stores and movie theatres are offering limited “sensory friendly” hours and showtimes.

Dance classes and theatre programs for children of all abilities are being skillfully created.

Inclusive playgrounds and parks are being built in some areas to provide equal opportunities for ALL to play.

Polling places have implemented practices to eliminate many hurdles of the voting process.

All these things should be commonplace, not rare exceptions.

I am grateful to see conscious efforts being made to include, but there are still miles to go. Adaptive equipment for children with motor, mobility, communication, hearing, and vision challenges exists. However, parents often must battle intensively with schools and insurance companies to acquire it. To make room for all people, we have to provide proper accommodations for them.

Parents and caregivers make the best advocates. We’ve learned to stand up to school administrators with firmness and decorum. We’ve become informed and we demand more from our lawmakers. We see first-hand, and close-up how badly things need to change. We can be the catalysts; we can use our voices to speak up for others.

As communities, if we all work a little harder, dig a little deeper, and view the world through eyes of compassion, kindness and equality, more progress can be made. Walls will continue to come down and the world can be more accessible to all the ones we love.

When my daughter was a baby, I vividly remember the sadness I felt in receiving the developmental milestones handouts at her routine pediatric checkups. Colorful sheets with indications of what children should be doing at certain stages were stark reminders of how far behind we were.

The expectations printed in black and white only brought me heartache and grief. Each item that we couldn’t check off felt like a firm punch to the gut.

Delays and possible “nevers” felt heavy in those early days. At each appointment, I would review the sheet given to me by the nurse, feeling that familiar sting, all over again.

Holding back tears, I would read all the behavioral and physical checkpoints at which my daughter had not arrived. Milestones like holding her head up, crawling, waving “bye-bye”, saying her first word, and taking her first independent steps seemed so very far out of reach. They were miles away.

Thankfully, as my daughter grew, I realized how unimportant those checklists were.

At every visit, I would quietly wish that the nurse would just forget and skip over the routine of handing me a copy. In time, I learned to simply fold that sheet of paper and tuck it away in our diaper bag. Numbers didn’t matter. The “shoulds” became irrelevant. I knew from her first breath that my child was a miracle and that her being here, with her family, was enough. We were on our own course, and she would follow her own path.

With early intervention, a plethora of dedicated therapies, and lots of love, she is a now a thriving 12-year-old.

She began learning to hold her head up at six months.

She amazed us and made us so proud when she crawled at two years. I cried happy tears when she waved “bye-bye” at age 11. It’s magical every time I hear her say “Hey Da-Da”; her first and only words that came many years after the toddler era.

She’s not yet taken her first independent steps, but it’s a goal that we’ll continue to work towards. In the meantime, she takes my breath away with every step she takes with her walker.

I’m in awe of all the incredible feats that she’s mastered. It doesn’t matter how long it has taken to get here.

I’m grateful for of every inch forward, no matter the pace.

Kids are all unique and they will do things in their own time. When my son was two, he wasn’t speaking in sentences or chewing. At 19, his vocabulary far surpasses mine, and he eats whole pizzas in one sitting. He did big things, on his own timeline.

There are many milestones that children with more complex disabilities, like my daughter, will have to work so much harder to meet. Some may not come at all, and I’ve learned that’s ok too. At 12, she’s working on potty training; I couldn’t be more thrilled! She is moving her own mountains daily and she astonishes us with her fierce tenacity and courage.

It’s genuinely a relief to no longer be weighed down and burdened by timelines. They are insignificant in our world. Looking back on the early days, I see how very far we’ve come. This life is not a sprint; it’s a marathon. We’re in it for the long haul. We’ll keep going, inch by inch, and I will never take any bit of progress for granted.

Just as I was getting my head around the idea that my little girl would be starting her school journey at a specialist setting I was informed that school transport would be provided. What, free? From day one? But she can’t go on a bus or get in a taxi without me, that’s impossible. She won’t cope, I won’t cope. I’ll at least drive her in for the first week or two.

As with many things happening at the time, a professional would gently tell me that this is how it was done and no, I could not just drive her in for a while. Logistically that would be very hard with so many children with complex needs arriving at the school, multiple buses and taxis, and a highly choreographed routine of safely helping the children in.

So we had to put her on a bus, from day one.

We could not meet the escorts beforehand but they would be briefed (I do think they could improve things by allowing this to happen). So, as September rolled around, we found ourselves helping our tiny four year old onto a mini bus with a car seat. She had a lovely woman sitting next to her whose job it was to look after her on the way. Off she went. We cried, lots.

When she returned home she looked a little bewildered but largely happy. We’d done it; plaster ripped off and our daughter using school transport. About a week in, I had a call from our local authority to say her transport was being changed to a taxi. I pushed back on this saying we did not want more change.

Luckily they refused to budge and a taxi was sent for her.

I did not realise how enormous the part this very team would play in our lives for the years to come would be. That was five years ago and we still have that same taxi team. They are incredible; I feel so lucky we were assigned to that route.

I had always imagined that a school transport escort would be there in a reactive role, not a proactive one. By this I mean that I thought they’d maybe reassure an upset child, calm a shouting one and manage any medical issues such as seizures. Ours does all this of course.

I could not have imagined however that they would read stories, set up an activity centre for her in front of her seat with specially selected sensory toys, consistently use (and teach her) Makaton, attend specific training with her epilepsy nurse, learn the name of every single one of her care team, her sibling, two different grandmas and both of our cats, seek out a random song she is obsessed with on YouTube to help her settle – the list goes on.

Two new transport escorts have since joined and they do the same (although I’m not sure they have learnt the cats names yet). It’s a full on job. The drivers themselves are incredible. Calm, warm and concerned (and excellent drivers of course, in often very challenging circumstances). This is no ordinary driving job, it’s very specialised and it takes highly skilled people to deliver this service.

They also know all the names.

Towards the end of last summer the local authority casually informed me they’d be changing our school transport in September. I explained (strongly) that this decision had to be reversed. Thankfully they listened and reinstated our transport team.

I believe there is a real lack of awareness and understanding of the role that school transport teams play. They start and end the school day. That’s a big deal for any child, but for a disabled child it’s huge. Transitions can be extremely challenging; these teams are experts in this. They read the situation, adapt to make things as smooth as possible and leave anxious parents and carers feeling a little calmer, while getting the children safely to and from school.

Unlike more well-known key worker roles such as teaching staff and nurses, these teams rarely get the praise and recognition they so richly deserve. Thank you, transport teams, so much.   

I will never forget the day we waved our tiny four year old off on the school bus to her new special school.

It held so much emotion for us, the immediate concern about her going on school transport, and more profoundly, the grief we felt that this was not the school we had envisaged her going to when she was a tiny baby and we were starting to mentally picture what her life may be like.

Grief pours out of the gap between expectation and reality; perhaps being a parent to a disabled child is one of the circumstances where this experience is at its most intense.

My daughter has been at her incredible special school for five years now.

I am so pleased that we made that choice for her from the beginning. There was a temptation from us to want to ‘give mainstream a go first’ but, looking back, I know that was more because I was not ready to accept the situation rather than it being of benefit to her. In the end, we were guided by a senior portage worker and a SENCO from my other child mainstream school. They kindly and gently helped us realise that a specialist setting was what she needed.

My older daughter felt sad that her sister would not be joining her school. This settled, although occasions like joint sibling school photos were painful for her, when she knew that her sister would not be there. As those initial weeks went by and youngest settled at her special school, I started to realise a few things. I realised that she would escape the pressure of exams, the drudgery of revision, the pressure to ‘fit in’, the playground sniping, social media angst, the boring bits of learning, stiff and uncomfortable polyester blazers.

Instead she was being given a curriculum tailored to her and delivered with such warmth.

It features hydrotherapy, bouncing, chickens and guinea pigs. Every day she lives in the moment with a specialised team around her to give her the very best time possible. There’s a uniform if she fancies it but if she wants to board the school taxi dressed as a Gruffalo, that’s cool too.

My advice to other parents sending a little one off to a specialist setting in September would be – just wait. Allow yourself the time and space you need to feel all the feelings that come up for you. But please know that not only does all this get easier; it gets positively joyful. You have been given access to an exclusive club and a secret world that only a tiny proportion of people get to experience.

In this world you’ll find the kindest of people, the most awesome kids, and incredible families.

I genuinely find myself smiling to myself sometimes when I realise this. It’s not the individual things that make special schools special but the sum of the parts which create a deeply positive and enveloping energy that I have yet to find anywhere else.