When my now 5 year old was diagnosed with Duchene Muscular Dystrophy, a progressive muscle wasting disease ages 2.5 years old, my relentless late night googling lead me to various fundraising pages based on doing incredible things to raise money for the research and awareness around the disease.

Overwhelmingly, these fundraising challenges were based on physical activity.

For a long time, I found myself struggling to understand this.

It seemed almost in bad taste to raise money for a progressive muscle wasting condition by doing the very things that are impossible to do if you have a progressive muscle wasting condition.

And then I started to run. I set myself one of the very challenges that I had felt so uncomfortable with just a few months previously.

I wanted to run a half marathon and I wanted to do it to raise money for Action Duchenne, the charity who have supported us since Sebastian’s diagnosis.

Since then I have run another half marathon and am due to run my first full marathon in April this year.

Why? Because instead of being in bad taste, I think every single time I run that I have a body that works. I feel my muscles work and ache and recover and get stronger. I am conscious of the complex biology that allows by body to train.

It might not make sense, but acknowledging this is a way to process the ongoing grief I feel that my son’s body does not work as it should, that his muscles don’t repair themselves, that they get weaker rather than stronger, that he will never feel both the freedom and the achievement that comes from physically training your body.

I run to pay homage to the fact that my son never will. It is a very physical manifestation of a very physical grief.

Not only this, but it gives me a way of gaining control of a situation I which I so often feel entirely helpless. I can’t fix Duchenne, I can’t make any of it go away.

So I use the frustration and the anger and the sadness to fuel the runs I do, to make me feel that I am doing something rather than nothing.

I know that the money I raise is simply a drop in the ocean of the Goliath sized problem, but it is MY drop in the ocean, my David sized rebellion.

So running a marathon to raise money for Duchenne is not in any way altruistic. It has become part of my way of coping, of understanding the way I feel.

It’s not, as I assumed in my first desperation filled google searches, a form of denial.

I am not running away from Duchenne as I pound my way round, as I push my body harder than I think I can.

I am running towards my biggest fears and the sadness underneath them, allowing both my brain and my body to hear them.

Sam has been at the same fabulous, specialist PMLD school for almost 5yrs.

It’s about 1hr’s drive from home and he has always been taken to school and brought home by a wheelchair-adapted taxi.

I can’t even begin to explain how much that hurts.

I always hoped that we’d still be able to take him to school, that it would be one ‘normal’ parenthood experience we could still have, but it wasn’t to be.

One of the most frightening aspects of sending my baby off in a taxi is that while he has a wonderful passenger assistant and driver, they are not legally permitted to give him any medical attention in the event of a seizure.

Given that Sam has around 6-10 seizures daily, it’s almost guaranteed that he WILL have some in the taxi.

Most are milder, short lived. But some are the life-threatening tonic clonics that stop him breathing, cause him to vomit and be at a high risk of complications such as choking or aspiration.

Sam carries oxygen with him at all times, a suction machine to help keep his mouth/nose clear of any blockages and when with us he also carries his emergency medication which can be used to stop one of these major seizures in its tracks.

However, neither his driver nor PA are allowed to use any of these.

And that’s where the problem comes.

After a couple of particularly aggressive seizures at school, funding for a medically trained attendant to travel with him was requested.

And almost as quickly refused; there simply wasn’t anyone suitable.

So it was quite a shock when on the first day back at school an ambulance pulled up outside our house and for us to be told that they would be taking our boy to and from school for the next 6 weeks.

We hadn’t been informed, neither had the taxi company who had also just turned up to collect him.

Everyone had expected someone else to tell us.

In the middle of this communications breakdown was an 8 year old child, confused by the sudden change, upset that his much-loved PA wasn’t there, and his wrung-out parents; distressed beyond words that their baby was deemed fragile enough to be taken to school by ambulance.

It has taken a week of phone calls to sort and to put more suitable arrangements in place.

I think we can safely say that this is not how I thought motherhood would be.

In FLOAT, a father discovers that his son is different from other kids in the most unusual way. To keep them both safe from judgement, Dad covers him and keeps him out of sight— but when his son’s ability becomes public, Dad must decide whether to run and hide or to accept his son as he is…

When Disney Pixar release a new short animated film, it’s usually something to get excited about.

When it is written, directed and produced by a parent of an Autistic child, and he uses the film to give us a glimpse into his and his son’s story, then it’s going to be ground-breaking. ‘Float’, a seven-minute animated short, has been created by Pixar animator Bobby Rubio, who has worked on features including ‘Toy Story’, ‘Incredibles 2’ and ‘Inside Out’.

Bobby is father to Alex, a young Autistic boy, and ‘Float’ is his way of sharing their story.

The film doesn’t specifically reference Autism, and indeed could be used as a metaphor for any parent-child relationship where the child is different or diverse, but Bobby and Alex’s story is clear to see in the relationship between the father and boy in ‘Float’.

In the film, the father is playing in the garden with his son; they blow some dandelion seeds which rise up into the air and then suddenly, much to the shock of the father, the boy is floating with them too!

His son can float! It’s not dangerous, it’s not hurting anyone, but it’s different and gets noticed, meaning that the boy gets treated differently. Other parents look at him as if he’s weird, or that there is something ‘wrong’ with him.

The father’s response is to hide his son away, keeping him inside and out of view. When they do eventually go out the father keeps his son on a leash and puts rocks in his backpack to stop him from floating away.

This works for a while, but then they are in the playground and the boy gets away from his restraints and happily floats around the playground, blissfully unaware of the reaction to him.

The other parents are afraid and the boy’s father, not understanding his son, grabs him and drags him away screaming.

Then comes the one line of narrative in the film, words that stop every parent of a disabled, diverse or different child in our tracks, because we’ve all at some point in our darkest moments said it, thought it, or prayed it… “Why can’t you just be normal?!”

It’s a defining moment for the father too… he deeply regrets what he has said and is ashamed, realising too late the hurt and harm that his words have caused.

He decides that he, the father, is the one that needs to change; he needs to embrace, accept and understand his son’s difference.

He stops trying to prevent his son from floating, stops worrying about the response of other people, and lets his son float freely.

The father has learned a very important lesson, one that is important for us all to learn, that we should not try to change or hold back our different or diverse children, but to let them be who they are, and to celebrate that with them.

The film ends with a dedication from Bobby Rubio to his son which says; “For Alex. Thank you for making me a better dad. Dedicated with love and understanding to all families with children deemed different. ”Words that should resonate with us all.

In the ‘making of’ video for ‘Float’, Bobby Rubio comments that; “When my son was first diagnosed, I didn’t handle it well,” “My wife said, you’re a storyteller, maybe you should tell the story through a comic.”

We’re all glad that he did, and that this comic became another great addition to the Disney Pixar lexicon.

You can currently watch ‘Float’ on the Disney+ streaming service, although it should be available in other ways in due course. There are clips from the film, along with interviews with Bobby Rubio, in the links below (some of them you’ll need to skip past the introduction or adverts first!)

Enjoy watching

Endorsement from Bobby Rubio of ‘Why Disney Pixar’s Animated Short ‘Float’ Is About Autism’: “Hi @Mark_J_Arnold Thank you for this wonderful write up! Don’t change a thing! It’s nice to hear that we’re now in the UK! WE are not alone! 🙏🏽❤️ Please tell your son I said hi!” Bobby Alcid Rubio #wearenotalone #onedadtoanother

 

Playgrounds are a staple of childhood. They are a right-of-passage of sorts.

I for one have spent many mornings, afternoons and evenings at playgrounds when my kids were growing up. Free activity, gross motor development, good for your lungs and soul being outdoors.

But boy how I’ve come to appreciate playgrounds even more since Brielle came along.

Who knew that the act of swinging could give much essential vestibular movement?

Swinging on all sorts of therapy and platform swings was a big part of her early days Occupational Therapy sessions.

She loves swinging so much that we even have a bar above her door frame with hooks for various swings (from Rainy Day Indoor Playground).

Nothing beats a walk to the playground and going on the swings in Brielle’s book! Especially if the weather is nice! We live near the sea so we have the added bonus of salty sea-air to clear the airways and lungs. 

Not only was we found swinging to be amazing for sensory imput and the vestibular movement, but we’ve found it a great tool to work on her communication (mainly signing).

As she wants it to happen, she’ll often request ‘swing’. Or ‘more please’. Or maybe she wants one of her sisters or me to go on the bucket swing with her so she’ll sign our name.

Honestly, we could not continue our home program of physio and OT if we did not go to playgrounds.

She also enjoys balancing on the boat, climbing steps and walked the bridge holding the bars (all with a hand on her back as she can’t walk due to her cerebral palsy). And she loves the slide!

It makes my heart so glad to see her outdoors and enjoying ‘normal’ childhood activities too.

It’s a very social thing too, and sometimes she picks up a friend at the playground, who is usually very sweet and helpful, and asking me all about what she can or cannot do.

I’ve been known to shed a tear or two quietly when I see some of the care and consideration afforded to Brielle from complete strangers.

She’s just another 8 year old girl who loves to swing – a very cute one though with obvious disabilities. She really does love playgrounds and we couldn’t be without them!

This is a conversation a lot of couples have- whether to have another child, how many, any age gaps, as well as other things such as a cut off point- an age after which they do not want any more children.

A conversation I didn’t expect to have was whether to have more children to help care for my disabled child after I am gone.

It is something I had never even considered until I saw a post on Facebook discussing this and it stuck with me.

Initially I was horrified- a person can’t have more children with the expectation of them caring for one of their other children.

That’s the most awful reason to have another child! But the more I thought of it, the more I could understand why people might make that decision, and the more it made me reflect on my own life and the role Rory already wants to play for Alfie.

Now don’t get me wrong, I do not expect any child to be forced to be a carer for their sibling, nor would I have another child only to care for their sibling with a disability.

A decision to have a child is a personal one, but for me is about completing a family, it is about wanting that child for the individual they will become and the love you can give them.

But then I look at Rory. Rory is a child we want and love and had with no clue that he may one day need to care for his brother.

We have never forced Rory to help us care for Alfie, and yet it is something he does instinctively.

He is always aware of Alfie’s needs and tries to meet them in any way that he can, whether that is by giving him toys, comforting him or even trying to feed him.

He has learnt this through watching us caring for Alfie and supporting him with everyday tasks.

It is the norm for Rory as this is how his life has always been- as he has become more independent, he sees us still needing to help Alfie and has made his own decision that he wants to do that too.

Thinking about it this way made me understand more why people may have more children in order to help care for their disabled child after they are gone, or unable to.

Seeing Rory care for Alfie in this way has shown me how natural it is for siblings to care for one another.

Rory knows what Alfie likes and dislikes and even tells other people to ensure Alfie is happy and well looked after.

He is his protector without even realising it and any disabled child would be lucky to have a sibling caring for them in such a way.

 

I see the way people look at my son when they talk to him and he doesn’t reply. It’s like they see him as unworthy, less than and unable to think just because he can’t verbalise words.

I see the way he is treated as somehow to be pitied when I use his wheelchair. He’s not worthy of the investment of a ramp or a suitable place to go to the toilet because he’s somehow beneath the rest of us.

When people realise he can’t hold his own in a conversation, he can’t carry out commands and he very obviously has learning disabilities they ignore him as if he no longer exists.

Apparently if you don’t understand something then the immediate thing to do is no longer talk to you at all.

It isn’t even just strangers who do this. Everyone from medical staff, to educational staff to family can at times be guilty of seeing my son as less than because he can’t read, write or understand at a level they think acceptable.

But what happens when people see children and adults like my son like this? What happens when my son’s access and toilet in needs are not met because he’s considered a financial burden instead of a fellow human being!

What happens when anyone disabled, or different in any way, is considered of less value and importance?

Well for one it shows ignorance of disability.

Many disabled people have university degrees. Just because someone uses a wheelchair doesn’t mean their brain is any less clever than your own.

Even someone like my son with very complex needs is able to do more than many give him credit for.

He may not be able to talk but he still hears what people say about him and even if the words are not understood your attitude tells him plenty that he does understand.

Secondly it shows contempt.

Any one of us could be disabled at any time. Not providing basic things like ramps of hoists or toilets with adult size benches shows how little people like my son are even thought about never mind catered for.

When restaurants can’t even have tables that wheelchair users can access from their chair and society thinks this is ok we are accepting that discrimination and abuse is acceptable just because someone is different.

We can’t allow this to continue.

Third you miss out on so much that disabled people can give.

Tonight, my son was admitted to hospital and a mum next to him called him an ‘absolute inspiration and miracle worker!’ She adored my son for doing one thing that no specialist, doctor, nurse or teacher had managed to achieve.

My son signed yes for lasagne for his hospital dinner and the child in the next door bed shouted out for the first time in his three week stay ‘can I have some too please’ because Isaac was so excited for his dinner.

My son can’t talk, is epileptic and has a progressive genetic condition as well as having severe autism but his excitement at the idea of dinner encouraged another sick child to eat for the first time in almost a month.

Every disabled person has something to offer because every person in the world has something to offer.

Value should never be determined by such things has whether a person can walk unaided or how well that can hold a conversation. There is never an excuse to see anyone as less than or of lower worth.

We need to start automatically making accessible buildings as standard, having loos everyone can use, being more patient if someone learns slower and treating everyone with the same respect regardless.

My son deserves this. Every disabled person deserves this.

I can vividly remember a day, nine years ago today, that was filled with tears, last-minute snuggles and through-the-roof anxiety.

It felt different the second time around for me; it proved even more challenging than the last.

It wasn’t just the typical, unrelenting exhaustion that I was dealing with this time. I was consumed by much more than the normal baby-separation blues.

My final day of maternity leave, after my daughter’s birth, was one that will be forever burned into my memory.

It came only a few short days after receiving my beautiful baby girl’s rare genetic disorder diagnosis. After learning this news, how was I supposed to EVER leave her side again?

I had only spoken to our Genetics doctor by phone at that point. He had explained my daughter’s chromosomal deletion with great kindness.

He was very patient and compassionate as I asked a plethora of questions through uncontrollable sobs.

Until the day arrived for our face-to-face office visit, I drove myself crazy turning to Google for more answers.

I desperately scoured the internet for information on her Chromosome 1q43q44 deletion. I did not like what I found. There were very few articles on this rare condition, and each one of them was bleak.

How could this really be happening?

Somehow, with energy drink in hand, I returned to my job and survived those first few days back at work.

With an abundance of caffeine in my system, and what felt like an enormous boulder sitting on my shoulders, I pushed through.

It took all that I had, but I managed to put on a smile and a brave face. I focused, as much as possible, on my work. I settled back in as well as could be expected.

For a moment, I believed that I COULD do it; working away from home was feasible. That confidence was fleeting. Everything changed after I left work early on a Tuesday to meet my husband for our in-person Genetics consultation.

I clearly remember walking into my boss’s office the following morning. Everything was different now. I was so nervous and had a giant lump in my throat.

My boss was the best you could ever ask for. Not only as a Director, but as a human being. He was fair and kind. My co-workers were also like family. I loved my job in Human Resources.

The work was fast-paced and serving our employees was gratifying.

However, after learning all that I needed to do to ensure my daughter would live her best life possible, my decision was clear.

I couldn’t bear the thought of not being at home, for every single moment of her life. My husband was completely supportive.

My Mom was proud of my resolution. That was all the reassurance I needed.

Once the words, “I’m sorry, but I have to resign”, came out of my mouth, the weight of the world quickly left me.

I felt free. I could breathe.

There would be intense financial stress and major lifestyle changes to come, but none of that mattered.

I worked on for another month and I cried when I walked out the door of that life for the last time. My new life and my new purpose were waiting for me.

Is this the right choice for every parent? Of course not. Would the extra income have been extremely helpful along the way? Absolutely.

Every situation is different. Every family is unique. In my case, my whole heart was at home, and I just had to be there.

We were given a diagnosis and with it, we were handed great uncertainty. Already having a son diagnosed with ASD, this was what I had to do.

There was no question. As scary as it was, it led to a whole new beginning, and with it came a fresh new lease on life.

For all the therapies, sicknesses, specialist appointments, school events, transitioning my son to online homeschool, etc., I have fortunately been able to be present.

For all the precious little moments with my children, I’ve had a front row seat. For the memories we continue to make, I am grateful. They are priceless. I don’t want to miss a single thing.

I gave up a considerable piece of my identity and a comfortable paycheck, but I have gained so much more.

Nine years later, looking back, I’d do it all over again.

All the stresses and financial strains have been worth it, to be where we are today.

My selfhood has changed; I love being a stay-at-home Mom. I also get to be an advocate, a special needs parenting blog writer, and an organizer of meaningful community events.

It’s not easy…there is no sick time, no vacation allowance, and no annual monetary bonus in this job.

It can be quite lonely, overwhelming and isolating at times, but the peace of mind outweighs all of that, insurmountably.

This is who I was meant to be. Saying goodbye to the working world was not a decision to be taken lightly.

I’m thankful that I did…The ending of that world gave way to something bigger.

Closing that chapter ultimately gave way to a most wonderful new world.