When is a Car Not a Car?

I would imagine that most people would say that their car or other vehicle plays a pretty important role in their daily lives. For my family, having access to our own vehicle is a lifeline.

As the Dude uses his wheelchair fulltime and is unable to self-transfer we chug around in a bright red, adapted Ford Tourneo. Provided through the Motability scheme, our big, glorious van allows him to travel in his wheelchair in comfort, safety and is an essential piece of mobility equipment.

We have recently had two very different experiences involving our beloved van.

The first was on the motorway, as we headed off on our holidays. Anyone who has ever travelled with SN children will attest that this is akin to planning a military campaign so we were less than thrilled to develop a flat tyre. Being unable to feed your child or attend to any person care needed is always less than ideal, especially when you consider that his seizures are frequent, can be life-threatening and any type of discomfort can trigger them.

We were saved from holiday catastrophe by the RAC man and the lovely staff at a well-known national tyre retailer. All of whom were amazing, made my boy feel like royalty, and ensured we were back on our travels quickly. The kindness and consideration shown by everyone from the first phone call to get help to the last wave as we drove off again made the whole event far less stressful. For us anyway, the Dude found the whole business very exciting.

And then there’s the other side to humanity.

As I mentioned before, our van has a ramp. A LONG ramp. It’s pretty obvious when its down, and yet recently another driver still managed to drive straight over it. They actually stopped, checked we hadn’t seen them, then drove off. We know this because the car behind them gave us their number plate. Sigh.

So currently, we are van-less.

While we wait for a courtesy vehicle to be sourced that is wheelchair-adapted (about as rare as hen’s teeth), we are effectively house-bound. We can’t take our boy anywhere; it makes you realise just how vital this vehicle really is to our lives. Accidents happen, however the selfishness of the other driver in just driving off still makes my blood boil.

Fortunately, school restarts next week so at least our boy will be able to attend thanks to his school taxi. I however will be spending hours on the phone as the traditional slew of appointments has just landed on the door mat. Because as any SN parent knows, the start of school term will always herald a multitude of appointments. Hopefully we’ll have our lovely van returned to us quickly, in the meantime working from home is once again the order of the day.

Seizures and Setbacks

No matter how many times I witness a seizure, I am traumatized and terrified. EVERY SINGLE TIME. When someone you love lives with this disorder, there is an ever-present heaviness.

And it’s so much more than just the actual seizures.

Parenting a child with complex special needs and an Epilepsy diagnosis means a heart filled with unrelenting worry.

It means the presence of a constant, nagging fear…knowing that seizures, even when hidden away for a long stretch of time, still lurk quietly in the shadows.

It’s learning to live in a state of chronic, traumatic stress.

It’s managing to keep every aspect of life as meticulously regimented and routine as possible.

It means tapping into a strength for your child that you never thought you’d possess. It’s never giving up and never backing down.

It’s being afraid to drive away from my daughter’s school, with a paralyzing anxiety of being out of her reach.

It’s feeling my heart drop into my stomach when her school calls in the middle of the day. Then, it’s driving at ridiculous speeds to get to her side, and the need to comfort her. The powerful, unstoppable need to hold her and tell her she’s going to be ok.

It’s not knowing when a perfectly normal day will turn into an ambulance ride to the ER. Not knowing when her happiness will be unexpectedly thwarted, in an instant.

It’s the heartbreak of watching seizure freedom being snatched away from her, as she again suffers the aftermath that the frightening event leaves in its wake.

It’s the recovery period that keeps her heartrate high and her breathing shallow.

It’s the medication increases that bring agitation and days of recovery from drowsiness.

After the dust settles and normalcy has finally been restored…it’s the setbacks.

My daughter has regressed in areas and lost valuable skills after having seizures. Each time, I feel defeated and heartbroken; grieving the abilities that disappear before my eyes. Skills that she worked so hard to attain seem to vanish, bringing us back to square one.

I’ve watched chewing fade away. I’ve witnessed severe anxiety return in social situations and when outdoors. Months and months of OT aimed at promoting self-calming skills have been washed away in minutes. Weeks of potty training and its long-awaited success have come to an immediate, crashing halt.

It’s easy to give into the heartache and frustration these setbacks bring. It’s easy to be sad and to get bogged down in things that are taken away. When this happens, I remind myself who my daughter is and all that she is capable of.

She is courageous in every facet of her life. She consistently pushes through. She overcomes. She gives me the determination to try again. Her tenacity reminds me that she has mastered impossible feats before.

With love and lots of time, she can master them again.

Our most recent setback was with potty training. That familiar fear crept in as all progress seemed lost. Had the skillset and understanding that she worked so hard to attain been erased? Potty training has been a monumental win for her and a life-changer for her health. It once seemed an impossible feat; it had finally become a reality. Thankfully, and to my great surprise, this newfound life skill and ability shortly returned.

Seizures did not win. Setbacks did not win.

We can never let them win.

We’ll fight back against them, time and again. We’ll keep a watchful eye out for their unwelcome return and try with all our might to keep them at bay. We’ll do everything in our power to always rise above the seizures and setbacks.


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?!      

A Trip to the Beach

We’ve recently returned from a family holiday. It felt so special that it was just us, no carers or enablers, just us, with grandma along for extra fun and another pair of hands. The trouble is, the very thing that makes it feel so precious (no one but family) can make it exhausting as well; no respite or night care for seven whole days and nights.    

We stayed in the UK as we are too scared to travel abroad due to seizures and unpredictable behaviour (one day we would love to). We were near beautiful beaches and had a week of almost wall to wall sunshine. What a treat. 

We went to the beach every day, but not for long each time. It’s hard to explain how challenging it is for us to go to a beach. It should be so simple, you turn up, lay out a ‘camp’, adults sit, watch the kids, kids dig and then you all paddle / swim.

By the end of the week we’d managed to get our beach routine and technique perfected.

Our little girl, Taz (not her real name) who is nine and almost as fast as a whippet, requires athletic supervision on the beach. By this I mean running. There was a team of four of us looking after her; me, my husband, my mum and our older daughter. The typical routine, which lasted about an hour to two hours maximum each day, went something like this:

1. Arrive at beac

2. Remove Taz from her buggy

3. Fastest runner (husband) chases after Taz who has immediately bolted across the beach at high speed. A key part of this role involves apologising to the families whose sand sculptures she has blasted through and whose ‘camps’ she has destroyed. Responses vary.

4. Remaining three in the party hoick the beach tent, buggy, buckets spades etc. about 20 metres on to the beach (no more as getting off the beach is a challenge).

5. Work begins to catch Taz and change her into beach wear (normally including a wetsuit as she likes to swim in the sea but hates the cold). Compliance varies depending on mood.

6. We all quickly change while one person continues running after Taz who has resumed her sprinting.

7. Catch up with and fit a life jacket type thing to Taz.

8. Head into sea – team Taz all plunge into the cold water super-fast so we are ready to receive her as we bring her in. She enters water and clings on to chosen adult, climbing up them and digging nails (that are overdue a trim) into their neck while she acclimatises.

9. Taz acclimatises. Is delighted.

10. Team Taz are cold, need to exit water. A wetsuit clad Taz is less keen and wants to keep ‘swiminin’.

11. Cold, salty rigamarole trying to encourage exit to beach.

12. Taz exits sea. Runs.

13. Few more laps of the beach. More sandcastles narrowly avoided.

14. Taz sits and digs for 6 minutes (we grab a quick photo). Taz runs again.  

15. Time to go. Taz runs.

16. Team Taz drag all the stuff off beach while designated chaser attempts to kettle Taz in the right direction by sideways dancing around her with arms spread reminiscent of herding sheep.

17. Taz allows herself to be lifted into her buggy.

18. We ascend extreme hill.

19. Repeat x 7 days.

Beach trips are extremely hard for us but the look on Taz’s face as she tears freely around the sand, and the joy on both girls faces as they swim in the sea together makes the extra exertion worth it.

This time last year Taz was going through an awful time with her epilepsy which saw her hospitalised six times with seizures. Just one moment of recognising how well she is doing right now is enough to keep me running.  

I need a spa break now though.

A story of bikes, benevolence, and breaking through barriers

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

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.

Milestones and Timelines

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.

Hidden Heroes: School Transport Teams

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.   

Starting at a special school

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.