Tuesday, 1 September 2015

So you are starting school

So, my boy, you are starting school.
The time has come.
Too fast. But here nonetheless.
My last baby on your next adventure.
The first big chapter that you'll do alone.

When I see all the little ones in their too-big uniforms looking like they are playing dress up, I won't be the only parent on the school playground gulping back a tear.

As the new reception class run around in circles with friends, acquired through pre-school play dates and nursery classes, I know that lump in my throat will be huge.

When I see all the shiny new shoes and empty book bags ready to be filled with worksheets and wondrous knowledge, I think my head might implode with emotion.

As the bell goes and there is a collective inhale as all the parents get ready to say that last goodbye, I might feel the urge to run.

When your brother and sister cast uncertain glances at the swarm of small arrivals on their way to their own line-ups, I know with certainty that a tiny part of my heart will break forever.

Because, my love, you won't be entering through those doors with the rest.
Those children who you played beside as babies in playgroup won't remember your name.

You don't get to wear the same school clothes as your siblings.
To pose as a threesome for first time outside the school gates at the top of our road.

There was no shiny new school shoes, no uniform that even fits.
I don't get to walk you into your first classroom and kiss you goodbye.

This year there will be no phonics to learn, no dancing as a twinkly star in the school Nativity.
The class bear won't be coming home prompting a random Tuesday night trip to the park.

I won't hear your thoughts on the school dinners.
Or smile as you say "I can't remember" when I ask about your day.

It will be a bittersweet year as that newest class remind me of all that could of been.
Moments when I'll long that amid their ranks skipped one more boy named Gabe.

So, my angel, you are starting school.
And that is amazing.
We are still going to mark, cherish and celebrate this important day.

We'll still get to kiss goodbye, but at our door before you are loaded on to your school bus.
You'll have to travel for 40 minutes to arrive at the specialist setting, but we were so incredibly lucky to get you a place there.

You don't need new shoes as you have your trusty Piedro boots.
And you'll still look like a superstar in your new red tops and dark track suit bottoms (and hopefully the uniform will fit next year).
You might not yet be tackling phonic snakes and ladders, but you'll be busy with hydrotherapy, your drama studio, noise dome, sensory garden and soft play area.

Best of all your friends will be waiting for you. Friends you've made and bonded with in the last 18 months. Friends just like you. Brothers in arms. Facing different battles with beaming smiles and endless giggles.

So you are starting school.
And we are excited.
We've high hopes - we know you are going to flourish and thrive.
There is no apprehension because we already know that you love it there.

They say children need two gifts from their parents - one is roots, the other is wings.

Well, my little boy, we've done lots of planting. Now it's time for you to fly.
You are starting school.
So soar high little one.
And when you stumble
Soar even higher.

Because mummy and daddy are right here.
And we'll break every fall.*

*Well I'll give daddy a shove forward as you are getting quite heavy now ;) xxx

Tuesday, 25 August 2015

Does mummy blogging have a shelf life?

I started blogging two and a half years ago by default really. I didn’t even know ‘mummy and daddy blogs’ existed. There was barely a mention of them on Facebook back then. Now my news feed is littered with shared posts - some funny, others sad, lots truly inspiring.

It began when a support group I joined was asking members to share their experiences for a new awareness day about undiagnosed children. Suddenly I had access to a raft of special needs blogs and was flooded with a sea of voices explaining so eloquently all the thoughts and emotions that were jumbled up in my head.

At first I only shared my blog within a private blogging group and the closed pages of the SWAN UK Facebook page. But then I started reading other blogs – a vast array of them – covering parenting in all its glory and I loved the ones that used humour to drive their point home. So with trepidation I made it more and more public.

Soon I became part of a small corner of the parent blogging community (there are literally thousands of parent bloggers out there) and made some lovely friends in the process.

I loved writing about all aspects of life as a parent - not just as a mum to a child with additional needs.
Writing about this strange new world of disability and special needs was incredibly therapeutic. It helped me navigate more effectively through the early peaks and troughs of life with Gabe and I met many people in the same boat so felt less isolated. The bonus was having a vehicle to convey some of my erratic emotions to friends and family in a way that I would never have been able to articulate face to face.

So all in all it's been a massively positive experience.
Parent blogging. 
Special needs blogging. 
Blogging in general.

But now I find myself at a cross roads.

At nine and seven, my two oldest children are reaching an age were I am reluctant to write about them. Children (pre-teen and teen) can be brutal and I am not sure I want any of their friends stumbling across this blog and having any ammunition on them. They are material rich but posting about their ups and downs with friends, schooling issues and their 'test the waters' behaviour is not fair. I think (at times in their life) the fact they have a brother that goes to a special school will be enough to raise their heads above the parapet without me providing more fodder for them on here.

If they decide to raise their own heads then all power to them. But that decision will be their own.

In the past six months I have therefore been subconsciously centering the blog more on Gabe.
Which by that definition makes it a different read. Now I'll post about a road that a lot of parents don't have to travel on. 

But that's okay, I thought. It is good to raise awareness. Share the experience so to speak. Perhaps even reassure parents starting out on this road that it's not always bumpy. Sometimes it is. You might even get whiplash. But not always.

But then I read an article by disability campaigner Carly Findlay called "Parents blogging about their children with disabilities: it is a fine line between awareness raising and shaming" and that kind of halted me in my tracks. 

Carly has a genetic skin condition called ichthyosis and in her post she said that she would be mortified if her parents publicly overshared about her condition as a child or an adult. She added that: "There’s been a recent influx of well-intentioned yet saccharine personal and mega-blogs devoted to disability stories told by parents. These sites ultimately provide support to parents and carers and medical professionals, rather than people with disabilities. writers are new parents - new to the experience of disability - conquering life one inspirational meme at a time. And most articles by parents outshine the articles by people with disabilities. Intent on educating at all times, parents have become our voice."

I have to be honest and say that initially Carly's post proper pissed me off. I thought of all the times I'd mentally applauded a post from one of those "well-intentioned yet saccharine personal and mega-blogs" and how they helped me gain much needed perspective.

I also felt like ranting how can you know? You are not a parent? Yes, you have a chronic condition? And you are awesome. You are. But how can you know what it feels like to face the prospect of caring for a forever child? The back-breaking endless turmoil that it brings? The grief? The misplaced jealously? Losing yourself and finding a new version. Most of us stronger and tougher. But sadly, some of us not.

Surely sharing our experiences honestly, the good and bad, can only be a good thing. The quicker we accept the new normal and get busy with enjoying life again will be beneficial to all including our disabled/special/additional needs child. To quote a friend, when facing a plane crash we need to put our oxygen masks on first before we can help our children.

And who better to bridge the gap and debunk the myths between the able and disabled world then the parent that sits in between the two. 

But when the initial annoyance wore off, I realised that she had a point.
And it was not her post, but the way she made me feel that pissed me off.
I felt a bit dirty - embarrassed and ashamed.
Like I had made a mistake.
That none of my reasons for writing were about Gabe - but all about me.
Because she is right. Although Gabe can't speak for himself right now (and might never be able to) his story is his and his alone.
Do I have the right to share it for him?

So after a month of not knowing what to write so writing nothing, I am grateful to Carly for making me think more about the child in this blog. About his dignity. The digital identity that I have made for him. I am grateful to her for making me question the reasons behind this blog.

Perhaps I should never have shared his name, or his photograph, never detailed his complex medical history or spoke about the bad days. Maybe it should all remain private. Left for people to wonder about. Maybe the many amazing connections I have made through writing this blog are not worth the risk that one day he would be "mortified" by this. Because even if I took the blog down, remnants would remain elsewhere. Social media casts a wide net.

But is blogging about your experience as a parent - whether your child has additional needs or not - such a terrible thing? Come on - there are much worse things that parents do. Is it any more damaging then posting pictures on Instagram or statuses on Facebook? The world is changing - who won't have a footprint as the digital revolution takes the word "privacy" and throws it into the air to land in pieces at our feet. We are all going to paste back that definition in many different evolving ways.  

I am even sure my eldest two will make many a social media faus pax in their teens all by themselves without my help.

It is such an interesting debate though and I don't have the answer.
For now though, I do think Gabe's story is a story worth sharing. 
I will keep revisiting my decision because maybe my urge to keep on writing is overshadowing my judgement in this.

He is different. And people are scared of difference. Maybe because we keep on insisting on creating this ideal world were nothing goes wrong. Where children are only worthy of discussion on their 18th birthday when you have their consent form to hand. Is it that healthy for every negative experience that shapes us to remain behind closed doors were we consume it alone? Where it is never openly discussed?

If I didn't write about him, yes his dignity and privacy would remain intact, but who would ever know the joy he brings to our lives, how we adore him, that his disability (in our humble view) is not as scary as you might think. That most days it is all bog standard run-of-the-mill.

In a society where everyone seems to want everything picture perfect, I think it is important to celebrate differences. Shout about them from the roof tops even.

Because no matter how many filters we put on our lives, we all have flaws, imperfections and foibles. Whether we are naughty over-sharing parent bloggers, earnest campaigners, social media shunners or just normal folk getting through the day the best way we can - sharing an experience, a giggle, a cry along the way -  worrying about what it will all mean in ten years when we get there.

Everyone is different. And how interesting and rich the world is for it.

Hello. Can I report a crime. My mum has been "sharenting" again. 
Please come quick. While you are there can you arrest her for her mum dancing please!

Friday, 21 August 2015

This is how you do it (disability is no big deal)

An excerpt from the early memoirs of Prime Minister Gabe, leader of the free world. Then aged 4 and three quarters. This was during his days as a hip hop music producer ripping off Katy Perry hits. 
Produced on his cousin Joe's old Casio keyboard.
Peace out.

This one is going out to all my homies... the ones that rock all those extra chromosomes, mutations, invisible disabilities or just have dude-like interesting brains...

(This is how we do, This is how we do)
Oh oh
Sipping on reflex meds, floppy muscles, coming up all lazy
(This is how we do), 
Drunk slow flow on overnight tube feeds, still up, still fresh as a daisy
Wailing sing songs all night long, everything's all neon and hazy
(This is how we do)

Piedro this, Piedro that, hell yeah
All my dudes in vintage Piedro baby

Only the finest hand made Italian leather Piedro boots
It's no big deal, it's no big deal, it's no big deal
This is no big deal

This is how we do, yeah, chilling, laid back
Taking our time' yeah we're in no rush
This is how we do, do do do do, this is how we do

This is how we do, yeah, chilling, laid back
Straight stuntin' yeah we do it like that
This is how we do, do do do do, this is how we do
Sort of Japanese-y

Chewbeads, and Lycra vests, my clique hoppin' in my WAV wagon
(This is how we do)
Brainwave, ConEd, at dietician, grabbing more meds, checking out hotties
Now we talking neuroplasticity, getting our spokes did, all Japanese-y
(This is how we do)
Day tripping at local inpatients, sucking real bad at SALT therapy-oke

It's no big deal, it's no big deal, it's no big deal
This is no big deal

This is how we do, yeah, chilling, laid back
Taking our time' yeah we're in no rush
This is how we do, do do do do, this is how we do

This is how we do, yeah, chilling, laid back
Straight stuntin' yeah we do it like that
This is how we do, do do do do, this is how we do

This one goes out to all the lads at physio pretending to be asleep
(It's how we do, straight stuntin' like that)
Uh-huh, I see you
Yo, this goes out to all you kids that have refused point blank to get on the school bus since Tuesday
(This is how we do yeah straight stuntin' like that)
Yo, shout out to all you kids, buying Mummy's wine, with your DLA money

This is how we do, yeah, chilling, laid back
Taking our time' yeah we're in no rush
This is how we do, do do do do, this is how we do

This is how we do, yeah, chilling, laid back
Straight stuntin' yeah we do it like that
This is how we do, do do do do, this is how we do

This is how we do
This goes out to all you fools being freaked when a boy aged ten behaves like two
Ha, not me

This is how we do, yeah, chilling, laid back
Straight stuntin' ya we do it like that
This is how we do, do do do do, this is how we do

What? Wait. No, no, no, no.
Bring the beat back.
That's right

(This is how we do), oh oh
(This is how we do), oh oh

Checking out the hotties. This is how we do it.

Oh okay here is the real one for those without kids that don't play it on loop in the car.

Wednesday, 22 July 2015

Parallel lives

I was half way there when I first saw him.
The gut ache of regret and loss didn’t get me that first time.
That came much later in the day.
To remind me that in the most mundane of moments, grief can sucker punch you at any time.

In an attempt to shake off the effects of sleep deprivation and soothe the wails of an over tired small boy, I had decided to tackle the two-mile walk into our town centre. This same shouting boy was the one who spent most of the evening awake for no good reason except to instigate a mini party that no one else wanted to go to – it seems he was just not cool or popular enough to pull it off.

Gabe was asleep before we rounded the first corner and with iPod in and retro summer tunes blaring, I found myself drifting into the wonderful state of dreamy musing. You know the sort of perfect detachment that happens once in a blue moon when you have three children under the age of nine, a job and a messy household that is hard to tame.

I saw him when his car paused at the traffic lights and I might have missed him except he smiled and waved. I smiled back, of course. But my smile wasn’t quite as wide as it might have been.

With his floppy, unruly white blonde hair, blue eyes and heart warming grin, he had stopped me in my tracks. 
He was without doubt beautiful.
And for the briefest of moments and the heaviest of hearts I wished he was mine.

This child, aged about three, was the image of my own son.
Except his face didn’t contain any of the unbalanced subtle wonkiness, the tell-tale sign of my boy’s genetic mismapping.

His face was perfect in its normality.
The car sped off and I shook the rising misgiving off. The moment was temporarily forgotten.

Arriving in the town centre, I tackled the list of jobs while my boy slept on. 
Within 20 minutes I saw him again.

We were in the library returning some books that my older children had once again forgotten about. He was darting from book case to book case - taking book after book back to his mum sitting patiently on a bean bag on the floor. Pausing only briefly to sit on her lap for a few seconds at a time - constantly chatting and pointing out items excitedly.

I had no reason to linger but I did. 
Gabe was stirring so I lifted him gently from the pram and sat him on my knee picking up some books. Recovering from his nap, he was still and just wanted to snuggle. The books in front of him held no interest.

Catching the mum's eye, I smiled in solidarity. Two mums, two boys, the quiet library on a school day. It was the briefest of acknowledgements as her child was calling out for her attention on the other side of the room.

Never stop talking do they, she laughed swooping him up.

At four, my boy was yet to utter a meaningful sentence.

I left then. Unable to watch this strange could-have-been Gabe twin anymore.
But today it seemed the universe was mocking me. 

We'd headed towards the park, via Starbucks, as Gabe adores the ducks. My favourite sight was watching him get excited and chuckle at the misdemeanours on the water. 

And there was the boy again.

This time he was throwing bread into the pond - jumping up and down in anticipation each time. His face alight with glee at this simple task. Once the bread was all finished he took his mum's hand and demanded "Cafe time. Now." Before hurtling across the grass.

They run everywhere don't they, the mum called over in recognition as she alighted after him.

At four, my boy could only step if a metal frame held his torso in place and helped him bear some of the weight of his body.

Reluctantly, sensing (and smelling) the need for a nappy change, we followed them over to the park cafe. Feeling slightly stalkerish, I nodded at the lady as we made our way to the toilets. On the way back I decided, on the spur of the moment, to order a cup of tea and sit on the next table to watch this boy - the fascinating Gabe double - a bit more.

He was tucking into a sandwich and negotiating artfully about when he could eat his cake. 
His mum beamed kindly when she saw us.
Hello again, cheeky little thing. They would eat cakes all day wouldn't they.

At four, my boy could manage no more than the most basic of mushed up food.

Glancing from one boy to another, I wondered if she too could see the similarity? 
If she could also see the glaring differences? 
Was this the reason why she was accounting for and dismissing my strange behaviour?
Did she sense my inner tumoil? My afflicting emotions? 
Or perhaps I was just another mum in the park on a sunny day.

Breaking my reverie, my baby reached up and touched my face with both his hands and uttered his most used phrase "Mam mam mam mam." Needing and seeking my full attention, he blew me a kiss. An angelic grin spreading across his little face as he watched me.

Some days you could send them back to the shop couldn't you, the mum joked admitting defeat and handing over the cake to her jubilant son.

At four, my boy was doing things differently.
At four, my boy was showing the world that nothing would hold him back. 
At four, he had fought harder and battled more than most kids his age. 
At four, he was inspiring and influential. He had re-shaped our lives in a good way. 
At four, he was not like a lot of his peers. He was unique. 

But he loved and was loved such a lot. 
He was incomparable. No one could come close.

Nah, I quite like him. I think I'll keep him, I grinned back.

Thursday, 9 July 2015

Game, set and match: how to win the lie-in game

Picture the scene.
It is 5am and your young child is awake and not happy.
You are now awake and not happy.
Your husband, however, is asleep. And looks far too happy.
Despite what my tee-shirt
says I am not happy.
Not a bit.

Still half comatose you wander into your child's room, ignoring the toxic assault to your nose, and plonk him in the middle of your bed. Pretending for a minute that you live in a Brady Bunch World where a toddler awake at 5am goes serenely back to sleep when snuggled between two loving parents (and a stinky poo in his pants).

Unfortunately, this is real life.
You know that there is more chance of Jamie Dornan turning up on your door step needing someone to help him practise his lines for his next movie.

Wednesday, 24 June 2015

How not to flick people in the face when your child has a feeding issue

Toddlers are fussy little monkeys when it comes to food - that is a well known fact. Apparently it's an evolution thing - an instinctive defence against eating potentially unsafe or dangerous foods or some other blah blah that means nothing when you are in the pits of dinner time doom.

I had it with my older two. The endless cajoling to get them to ingest something other than chips. The patience dredged up from the pit of the stomach as we sat down for an actual real-life home cooked meal that they refused to eat (but it's beef goulash. Really yum!) The pretend stomach ache as dinner is placed on the table that magically disappears with the mention of the word biscuit.

Monday, 15 June 2015

My Dad - growing up with a rebel

It was one of those lovely post-roast moments on a cold Sunday. The remnants of the previous evening's drunken shenanigans with friends had finally abated and the hangover hunger was sated by my mum's Yorkshire puddings.

Settling on the sofa as an old film buzzed in the background, the idea of getting packed up and heading to the train station for the three-hour journey back to London from Liverpool was galling.

"I better start making tracks", I announced to my audience of Mum, Dad and younger brother.
"Why don't you stay for another night?" Dad piped up from under his paper. It was very cosy with the fire blazing whereas outside the wind was roaring.
"I wish, but I have work in the morning."

Dad put the paper down and with stark sternness and authority stated simply:
F**k work.