I’m sure I don’t need to tell anybody that though.

My son was diagnosed with epilepsy in October 2015 after a two-and-a-half hour – (yes, 150 minutes!) – seizure landed him in PICU, intubated and ventilated – unable to breath for himself.

He had experienced seizures before this when he was on the cooling mattress in NICU, over 9 hours on his worst days.

Then as he grew older, they became very few and far apart, until that awful day in October 2015, when I thought I’d lost my baby – just 17 days before his 3rd birthday.

Watching his tiny body uncontrollably shake whilst over 12 doctors, nurses and anaesthetists ran around him, sticking needles everywhere to try and find a vein that hadn’t already been overused.

Then using what I can only describe as a DIY drill to gain intraosseous access into his shins, just to give his body the fluids needed to keep up the fight.

Intravenous access was no longer an option so they injected directly in the marrow of the bone to gain an entry point that wasn’t collapsible to provide fluid and medication.

After what felt like a lifetime, the decision was made for him to be anaesthetised and sent to the nearest children’s hospital with a paediatric intensive care unit which was over 50 miles away.

He was sent in an intensive care ambulance as a time critical call.

That journey was the longest journey of my life.

Sat in the front of the ambulance, as there was no room in the back, blue lights flashing and sirens wailing, I felt like I was stuck in a time warp – not moving anywhere.

It was that moment, that very moment when I looked over my shoulder, through the little window into the back, the anaesthetist looked back and smiled – they’d finally gotten a response (albeit the smaller respiratory effort, but, it was a response).

It was then that I saw the first glimmer of hope, my boy was fighting.

Fast forward a week on PICU and a further month in hospital, my boy was home and on medication to help prevent seizures.

Ever since my son was born I’ve appreciated every-single-moment, but since his epilepsy diagnosis and the realisation he could be taken from me at any time – I’ve learnt to ‘seize’ every moment.

Take pictures, smile, laugh, do silly things, cuddle as much as you can, love as hard as you can.

Because it could all be taken away, just-like-that.

Since being on medications, we’ve ‘only’ seen between one and three seizures a month.

Each one displaying similar traits.

It never gets any easier though.

Each minute seems longer.

Each time his lips go blue from the inadequate breaths he takes whilst seizing.

Counting down the minutes until I can administer his buccal modazolam, in the hopes it will stop the seizure in its tracks.

After every seizure you can’t help but wonder what damage it could have done to his tiny body.

After his big seizure in October 2015 he was blind for over 3 weeks.

Thankfully, his recent seizures have been under 10 minutes and he’s slept them off after having his rescue medications.

We’ve also been dealing with a lot of neurological irritability recently.

Our epilepsy nurse has also mentioned ‘auras’, an aura can be anything from a funny taste in the mouth to seeing flashing lights or a really, really bad head ache.

Now, my son cannot communicate his needs, so his only way of notifying me of his unusual feelings is to cry.

Not his normal cry.

A high pitched almost shriek like noise.

Life with a special needs child is hard, a special needs child with epilepsy makes it even harder.

Going out is hard, enjoying outings can be even harder.

But if you can…

Get out and, ‘seize’, the moment.

Make memories.

Love.

Laugh.

Live.

Maybe it’s a free coffee on your way to work, or an ‘on time’ bus.

A full wallet, a nice car.

A sale in your favourite shop.

A warm home and food on the table.

Or if you’re like me…

It’s a smile from your child.

A week with no seizures.

A night with more than four hours sleep.

A medicine syringe with the numbers still on at the end of the week (exciting life, eh?!).

Anyway, I’ll move along, so as not to bore you.

Some days you’ll smile because that’s the only option, because if not, you’d cry.

Like when you’ve *just* put your son to bed and he wakes up – HOW does he get by on such little sleep?!

You’ve been awake for 20 hours, you’re exhausted but you’ll smile, you’ll smile at those gorgeous, big brown eyes staring back at you.

You’ll smile when you start thinking things like, “well, at least I get to spend more time with him than anyone else…”

Sleep deprivation does funny things to you, like thinking your own ‘inside jokes’ are funny.

But when you’ve watched that little life slip away more times than you’d like to count, every hour is a blessing.

Each sleepless night is one that I wouldn’t change.

Because when I look into my boys big shiny eyes, I’m suddenly the richest person in the world.

Nothing else matters.

It doesn’t matter how much money we don’t have, how tired I am or how hard tomorrow will be, surviving on such little sleep.

Our bubble is our happy place.

We entered ‘our bubble’ just moments after my son was born with a severe brain injury in 2012.

“Babies like Aj don’t survive.”

Five words from a neonatal consultant that ring around my head on a daily basis..

And I smile, every time I think of those words.

Because he did survive. He showed them!

I haven’t always been able to smile when I’ve thought of his struggles… our future.

I’ve screamed, I’ve cried, I’ve stomped my feet and asked “why him?!”

But there comes a time when you have to let go of your vision of happiness only being ‘perfect’. And accept that what’s in front of you IS perfect.

He may not be to ‘outsiders’, onlookers, they’ll ask you how you do it and quickly exclaim that they couldn’t… but you’ll know he is perfect, and you couldn’t or wouldn’t even like to imagine this journey with anybody else by your side, that little boy with the big shiny eyes.

And that feeling, that’s happiness.

The best feeling in the world.

#internationaldayofhappiness

‘Join the movement for a happier world’.

Smile at a stranger.

Say hi to someone who looks lost.

Offer help when someone’s struggling.

Spread love, hope and happiness.

A smile can change a person’s day.

More so after a day of seeing you struggle, or seeing children your age, or seeing you struggle around children your age.

I never really notice how ‘delayed’ you are until it literally smacks me in the face when we are around other children.

The gap between abilities like speech – (WOW, children can talk…SO MUCH!) it’s insane.

It hurts. Really hurts.

Almost, aches!

Like a dull, niggling, pain that never really goes away.

It’s just sometimes easier to ignore it and distract myself, rather than sit and ponder over it, which we all know, makes things 100 times worse than they are.

If you had never suffered a brain injury, who would you be?

When would you take your first steps?

How fast could you run?

Would you like climbing?

Jumping?

Would you like games?

Hide and seek?

Tag?

Would you be competitive?

How high could you swing?

Could you do the monkey bars?

Climb the stairs to the slide yourself?

Would you like to sing like me?

Or would you be more of an, ‘out-doorsy’, person like your Dad?

Would you have been to the shooting range with him yet?

Would you follow in his footsteps and become a royal marine?

You certainly have the determination for it.

Or follow in mine, and aspire to work with disabled children? (Ironic, eh?)

What would your voice sound like, would you be cheeky?

What would you first word be – nothing naughty I hope?!

Would you be popular?

Charismatic?

I could ask myself these questions a thousand times and the sting would never change.

It would never hurt any less.

In fact, I think it probably stings a little more with each thought, each day that passes.

But, then I think…would you even be.. you?

The you I have grown to really know over the past for years.

You have the cheesiest, most determined little personality.

More determined than most adults I’ve come across.

I often try to use your determination to push myself to do the things you can’t, like the walk we did this weekend!

1,827 feet up the side of a HUGE hill!

I wanted to give up, quite a few times, but I thought of you, and how you can’t do things like that alone and that pushed me.

You have the most beautiful smile, the best I’ve ever seen.

Ear to ear, you could melt even the coldest heart.

You can say so much just with your facial expressions.

Would I ever have been so attentive to the small things if you were never, you?

Or would it have just been overlooked, if you could talk?

You can tell stories with just your eyes, sometimes, I think you’ve been here before.

The way you stop and just stare, then a huge smile will come across your face, as if you are thinking happy thoughts.

I want nothing more than to be able to understand and share those thoughts with you one day.

I would never change you, not for the whole world.

But I can’t help but wonder…

Who would you be?

You’re inspirational.

You’re still a mother.

You’re brave.

In the fifth grade, our class was in the midst of a losing a reading contest, so I read The Hunt for the Red October in three days — all 656 pages.

Pizza party for everyone.

I breezed through high school and college, seeking out challenges wherever I could find them.

Advanced Latin for my language requirement.  Yearbook editor.  Discus and high-jump.  Basketball statistician.  Winter, “Snow Queen”, cabinet.  Church handbell choir. State champion public speaker.  Pit orchestra.  Et cetera, et cetera.

At the time I gave birth, I was establishing a communications department for an international company.

I consider it a gift from my father.

He is the same way and has made many significant contributions with his life.

Our love for learning is a deeply cherished parental-daughter bond.

At the same time, it has sparked ugly worry as a mother myself.

What if my son isn’t… smart?

Logically, intelligently, emotionally I know the answer is that it doesn’t matter.

But for a long time, I kept the question secret because I was so ashamed.

We don’t fully know how my son’s encephalopathy and hydrocephalus will affect his executive functioning and cognitive abilities in life.  He’s only three.  Even still, at this young age, I’ve been hyper-concerned about his skills in vocalizing colors, or knowing animal sounds, or watching him struggle to pull down his pants.

We have had physical therapists, occupational therapists, speech language pathologists, special education teachers, adaptive learning techniques — and about 12 different medical specialists and geneticists.

I secretly seethed inside whenever another mother said to me, “Oh, you watch.  He’ll learn how to walk someday.  He’ll be just fine.”

Those same mothers were engaged in major bragging wars about how exceptional they wanted their own child to be.  Who knew their alphabet first.  Who could scale a bookshelf.  Who was already ice-skating.  Who could build an empire out of Legos.

I sat there politely holding a coffee mug many times as they talked around me.

I didn’t exactly want to be part of the war, yet I was totally resentful about my son about being passively dismissed as an adorable non-threat.

I have witnessed in a clinic lobby as two doctorate-holding parents refused to accept their son’s speech evaluation because it was just a phase, not a characteristic — their son wasn’t “that” kind of kid, they said.  In other words, my kind of kid.

“They’re definitely not the first academic parents to resist,” sighed our pathologist.  I smiled, grimly.

I feared my son would be irrelevant.

Don’t expect too much from that Barbero boy, but whatever he could end up doing, that’s just great.  Good for him.  He’s a cutie.

And then, just before three years old, I had a beautiful awakening.

“He’s smart,” my Dad said one day as we were drinking green tea and watching my son play with trains.

The comment surprised me.  People don’t really call my son smart.  They say he’s cute, or happy, or adorable, or handsome.  But not smart.

“You think so?” I asked.

“Sure!  Look at the way he problem-solves, the way he figures out how to work around challenges with toys or movement.  He’s been that way ever since a baby – watching things people do, figuring out how to get something when he couldn’t walk, knowing what you’re saying even if he can’t talk.  He’s smart in his own way, and I think he happens to be really, really smart.”

I didn’t realize how much I had wanted someone else to say it.

I knew it, I saw it every day.  I truly wasn’t worried that my son wasn’t smart — I was worried that the world wouldn’t see him as smart.

I was worried the world wouldn’t see him.

So I stopped worrying about the world, and I went back to enjoying him.

With my son, I have a whole new excuse to explore the world in a new adventure — to see it through his eyes.  To watch him grow, and learn, and react.

It has also healed me, in a way.  I no longer consume as much as possible — for the first time ever, I set down a book that I was disinterested in and didn’t force myself to finish it.

Now I relish in the experience of discovering an essay or recipe or album that really sparks interest for me.

Instead of seeing it as something to be conquered or checked off a list, it’s now something to be shared  with my husband, my son, my friends and family.

It’s the act of learning that sparks my joy, and it’s my son who has turned me into a true student, not just a do-er.

I couldn’t be prouder of or feel more connected to that bond.

The show is portraying the mother as quite a selfish character, she cares too much about what the world will think of her, and not the needs of her son. Therefore, delaying possible interventions that could help him.

The grandfather is quite old fashioned, he thinks there’s a cure somewhere and if Joe wasn’t given his own way – he wouldn’t be the way he is..  

Don’t get me wrong, I’ve enjoyed the show so far, but it’s a whole different world to what *we* live with autism.

I been asked in the past, “Would you change him? If you could..?” 

And honestly, my answer a year ago would probably of been, “Yes”. 

I wasn’t in a good place soon after Aj’s diagnosis of, ‘severe’, autism. 

Endless meltdowns lasting anything up to 3 hours used to reduce me to tears, daily.

He’d hurt himself, biting/scratching..

It was hard. Very, very, hard. 

With a non verbal child with autism and cerebral palsy, you have to play the guessing game. 

Are you hungry? Tired? In pain?

How could I ever understand a child who didn’t speak?

But now when I’m asked? No. 

No, I wouldn’t change him for the world.

But what I do say is that I *would* change the world, for him.

I’d change others. So that they could see and understand the beauty of being different. 

(Because who really wants to be the same as everyone else?!)

Myself and my son are in a much better place now than we were a year ago.

We’ve learnt each others ways and built routines.

I’ve learnt how much something as simple as bubbles, his iPad and favourite blanket can change a situation from being on the verge of the mother of all overwhelmed meltdowns, to him, and me..

Being in our happy place.

Our bubble.

No distractions, no questions, no judgement..

Just us. 

The calm after or even sometimes before the storm! (cliche, I know!!)

So why change him? When he’s happy?

He doesn’t understand what a cruel and scary world we live in. 

He doesn’t have to worry about his future, about the awful things happening in the world around him.. 

He’s happy.. In his perfect, bubble filled, upside down, spinning round, non stop world..

I can’t change him, and I’ve realised now, I wouldn’t want to change him, so i enjoy it with him – at his pace..

Autism isn’t the end of the world.

It’s a new world.

A more colourful, brighter, louder and faster world.. 

You’ve just got to look at it from a different angle.. 

Sunny side up..side down.. 

Those hugs and kisses will come, don’t worry.

The doctors and nurses just need to make sure he’s stable enough to withstand being handled, they need to get his seizures under control and help him breath. Those machines you can see, those beeps you can hear. They’re all there to help him. Those meetings you keep being called to, the plans around resuscitation and blood transfusions. They’ll eventually end – with a much better outcome than you’ll be told in the meetings – you ARE going to take your baby home.

Throughout his life, I can tell you – You’re going to scream, scream louder and harder than you thought you could. You’ll scream for many different reasons. You’ll scream with happiness and excitement when you see him reach milestones you were told he wouldn’t.  You’ll scream in fear, fear that he’ll lose the battle this time, will this be the seizure that’ll mean the end? You’re going to laugh, you’ll laugh a lot. At his funny little smile, his cheeky personality.

You’ll laugh at other people’s ignorance towards ‘real’ life. You’re going to cry, yeah…a lot. The crying part really hasn’t stopped yet. It won’t be all the time, just the dark days – the days when you realise, just how different you and your child are from the rest of your friends and family. Some will even be happy tears – like when you’ll hear him laugh, it’ll take a while for him to do it. He’ll be around 18 months, and some will even say it’s not a ‘real’ laugh, but you know it is, and it’ll be your favourite sound in the world – then his yawn will be the second! You’ll smile. Those smiles will be around more often as he grows, I promise.

You’ll even learn to smile at the professionals who’ll say he can’t do something, he’ll show them. You’ll feel alone, alone in a room full of people – specialists, physios, OTs, paediatric doctors, neurologists, learning disability nurses, feeding experts etc, whilst they’re all talking about what’s best for your child. You’ll feel inadequate – Useless. I mean, I can see you thinking “What do you know? You’re just a kid yourself, how will you ever understand these big words and their medical terminology?”. Well, let me tell you…3 years down the line and you can still shock doctors and nurses by how much you know.

You’ll even be able to tell them some things about your son that they don’t know! You’ll feel guilt, like you’re somehow going to fail him. Don’t worry – you won’t. You’ll feel like Super Mum sometimes. When you’ve juggled 5 appointments in one day, you’ve planned feeding times and strategical naps between them, just to make sure your son has a chance to show his potential in front of the physio! You’ll be more scared than you’ve ever been before – you’ll spend hours upon hours in the resuscitation area of a&e, you’ll watch your child fight for his little life not once, not twice but three times. 3 weeks before he turns 3 you’ll be sat in the paediatric intensive care unit, learning how to do gastronomy feeds and how to manage his epilepsy. You’ll spend that birthday in hospital, but don’t cry about it. It’s for the best. You’ll grieve, grieve the child you’ve never met, the things you’ve missed out on as he has grown. He might not be able to ride a ‘normal’ bike, but you’ll get a specialist one provided by an awesome military charity, you’ll be SO excited when you see him ride it!

You’ll deal with seizures, surgeries, medications, hospital stays and you’ll start to feel like a nurse in some ways. You’ll have listened and watched many students be trained, you’ll think you can do it yourself! You’ll feel like a pharmacist, your medicine cupboard looks just like the pharmacy, bursting at the seams, but you’ll have it organised and neatly set out – you’ll know what you’re doing. You’ll be his PA, making and taking phone calls, planning and rearranging appointments around his other commitments. You’ll think you’re doing it wrong but you’re not. You’re learning. You’ll feel the lowest lows you’ve ever felt but I promise you’ll also the highest highs there are. The two will actually be pretty close together. Like the time when he was 12 months old and he said “HIYA!”, but not long after, a seizure will come along and wipe it all away. You’ll feel love stronger than ever before, see courage, strength and determination shine through that little person. He is going to be just perfect. Maybe not to the world around him, or to the doctors who will prod and poke him. But he will be YOUR perfect. And do you know what? Everything is going to be okay. You’ll just change your meaning of ‘okay’.

But he doesn’t need you to feel sorry for him, he’s still Aj.

He’s still the same little boy he was 3 weeks ago.

He still have the same beautiful smile.

All that’s changed are his physical abilities.

It’s hard when people pity you, I’m trying so hard to be positive – to make people a little less nervous (I’m guessing?) around him, but at the same time.

I’m still grieving for the parts that have gone.

You see my son used to walk, not very well.

But he walked.

He would follow me into the kitchen and point for his biscuits.

He could climb/crawl up the stairs.

He could climb onto the settee.

Get himself off the bed.

Use his own iPad.

Lift his own drink.

All of that has gone.

“Will it come back?” – a question I’ve heard, and asked myself, and doctors a thousand and one times.

The only answer is that we don’t know. No one knows.

You see the longer a seizure lasts, the more likely it is that there will be lasting damage to the brain.

He already making huge improvements though.

Two weeks ago his doctors feared he was blind.

He wasn’t fixing or following anything with his eyes, they weren’t even reacting to lights.

He couldn’t roll over or even change his own position.

Now, he’s sitting unassisted for longer periods of time and I’m more than 99% sure he’s seeing the TV!

A recent eye test showed he’s now following things with his eyes, but his eyes are, ‘wobbling’, in certain directions, which can indicate changes in the pathways to the brain.

There will be further investigations into this.

He’s even starting to try and crawl.

I’m hopefully he’ll regain some of the lost skills.

But, at the same time, it’s made me wonder.

Aj using his Scooot

Is walking really all that matters?

It’s taken me a while to get used to, but now I’ve realised, it doesn’t matter if he doesn’t do all the things he used to.

If he learns to walk again then yeah, that’ll be awesome!

And if he doesn’t?

That’s fine too.

As long as he is happy.

“Does he have a special talent?”

If I had a pound for every time I had heard those statements and questions. Well.. I think I’d be pretty rich by now.

What people don’t understand is that autism is a HUGE spectrum disorder.

The range between mild, severe and all the in-between is massive.

The ‘clever’ people they talk about, with ‘special talents’ have what you’d call ‘high functioning’ autism.

And people with this are usually only really good at something in particular because they struggle in other areas.

So, instead of struggling to do the thing they aren’t so good at, their brains automatically focus on the thing they are good at, therefore they just get better and better at said subject.

I was recently out shopping with Aj when a lady asked and started quizzing me about my son’s autism.

She told me how her sister’s son had autism, and in her words, “He’s what you call a high achiever, though.”

Wow, well, that was a bit of a kick in the gut.

She probably didn’t mean to come across as being so rude (well at least I hope not!) but what she said really hurt my feelings.

I tried to explain that we’ve been told our son will never be the ‘high achiever’, but then she just shrugged it off.

That’s why I wish people knew more about autism.

Having the knowledge would prevent (well hopefully) hurtful, thoughtless comments like those.

When you see documentaries on the TV or stories on social media about autism, it’s more or less always about individuals who are high functioning and have, ‘special talents’.

I think this gives the wrong perception of autism as a whole, and people just seem to forget how much it can actually affect someone’s life when your on the severe end of the scale.

Obviously, I understand having any form of autism has an effect on your life, severe or not..

I just wish it was always the ‘success’ stories, for want of a better word, that get publicised!

After all.. Awareness is acceptance!