It wasn’t supposed to be like this……

Well no, it wasn’t, but it is, and you will deal with it! That is what I would tell myself of two years ago if I could go back in time.

Almost two years ago today I remember I took to Google, (I seemed to spend a lot of time on there back then) worried about Matthew’s ever more evident developmental delay, confused, scared and seeking some form of validation of my fears and answers to questions which in reality I didn’t want to ask.

Is my child a…<delete>

Aut <delete>

Does my child have au <delete>

Is my child aut…<delete>

I knew what I wanted to ask, so did the Google auto predictor and it was staring me in the face in the search bar “IS MY CHILD AUTISTIC?” But I was too scared, too much in denial, too fearful of the answers to press enter, but eventually I did.

Autism is a lifelong developmental disability that affects how a person communicates with, and relates to, other peopleAs explained by the National Autistic Society on their website.

Three words stuck out. Autism! Lifelong! Disability!

I remember my heart sank, the description told me enough and I think fear of the unkown led me to close the page until my curiosity took over again a day or so later.

At the time I didn’t know much about autism, I had a clouded view of it that lay somewhere between those now frustratingly common misconceptions of “Oh, like Rain Man” to a peculiar image of a child without emotion or a smile that hides away in the corner of a room, though reading about it didn’t clarify much either, it just made me hurt.

I referred in my original article (A Dad’s view of 15q) about shattered dreams, although at seven months old Matthew would probaby have been way too young to diagnose with autism, reading about it and the difficulties the condition can create made my heart sink, I crumbled and I convinced myself that Matthew would never develop beyond a baby without a smile and we would never have that father son bond.

“It wasn’t supposed to be like this….” was what I told myself, no it wasn’t, but little did I know then that I would deal with it.

Back then, maybe it was the fear of the unknown, maybe some sort of prejudice, shame, ignorance, a combination of the above I am not sure, but I know I was terrified, just at that word, autism, though the autism was ultimately put the back of my mind for a while when Matthew  was diagnosed with epilepsy and then IDIC15 in the months that followed.

I still had no idea if Matthew had autism, although I had convinced myself that was the case and all I could imagine was that my little boy who from the day we were blessed with him I had envisaged being full of life, smiles, curiosity and energy would be taken from me by this condition, well that shows how little I actually knew about it for a start.

So, fast forward two years, and yes, Matthew is on the spectrum as confirmed by our child development specialist just this week, quite where we do not know as yet but I guess time will tell on that. Normally this would be a diagnosis that would reduce a parent to tears, but given the challenges of the past two years it didn’t.

I had already accepted the likelihood sometime ago and the diagnosis merely confirmed what we already knew, and one that would give more concrete direction to his ongoing support.

Does it scare me now? Not in the way it did, though the future is unknown and does make me wonder. Does it change anything? Well, I have changed in the two years, but does it change anything with Matthew? No! He is my little boy, the same little boy who I held with pride on the day he was born, a little boy who I am immensely proud of today.

Is he bereft of emotion, life, smiles, energy and curiosity? Definitely not, I guess if you are reading this and know autism from your own child then my ignorance and naivity of two years ago would have made you laugh, or raise a cursory eyebrow! A kid with autism without energy, character or life!? Not a jot, this kid has it in abundance!

He smiles, he laughs, he makes us smile, he makes us laugh – lots! He just does all those things in a way we never expected.

He may not establish constant eye contact but he is loving, affectionate and curious,  the eye contact he does achieve with us is so warm, genuine and melts me inside, he is everything that I imagined he would not be, he may not talk but he can communicate in a way that is so special.

We have just needed to adjust ourselves in order to accommodate him and understand him and by hell is he worth it.

I have no idea if I am stronger than I was two years ago, I suppose in a way I must be, there has been a lot of water under the bridge that we have dealt with and tackled head on.

Today, being able to tell someone Matthew has autism is likely to get a far more sensible and coherent response than what we currently get when we say he has a rare chromosome disorder. Though no doubt I will no doubt be asked “So what is his special talent?”

So to the challenges ahead, Matthew is but a dot at the moment, a toddler that has absolutely no sense of danger and a zest for life that drains energy from us both every day, but every morning that energy returns to us for another day of bringing up three kids, each one special, each one perfect.

In a few years time? I expect the challenges will grow as he does, I hope and pray each day that he spared the seizures so common with IDIC15 and the future is unknown and scary, but I will tell myself now, so I don’t need to later, “It wasn’t supposed to be like this, but you will deal with it!”

 

 

 

 

 

 

 

 

 

Three Small Words….

Love. You. Daddy. Three small words that are taken for granted by most fathers across the world, indeed they were three words that combined I too took for granted with my daughters as they grew up through their toddler years, though now they are more likely to say, “You’re embarrassing Daddy!” Though I will forgive them for that as when they are teenagers I will do my best to be super cringeworthy!

These three small words that I took for granted are now a monumental milestone that I maintain hope I will one day hear, yet with a brutal irony accept that in all reality  I may never get to.

Each morning, sometimes far too early for me, the sounds of Matthew stirring in his cot transmits through the baby monitor.

Sometimes, a deliriously happy little Matthew who is smiling ear to ear and can’t wait to be picked up from his cot, others a seriously angry little chap, annoyed and affronted that something should have stirred him from is slumber. Sometimes he stands in silence, reaching out to open his bedroom door from the cot and flicking his bedroom light on and up and down with the dimmer switch.

Each morning he is freed from his cot and his cosy sleeping bag, each morning he gladly accepts our arms and wraps his arms lovingly around either my or Debbie’s neck as he is greeted with hugs, kisses and a greeting of, “good morning”, each morning that hope remains eternal he will reply with “love you Daddy”.

Instead we are met with silence, the smell of dummy spit and are covered with dribble, but a cuddle that warms the heart and makes it all better before he wants to get down, charge around every room, banging doors and pulling their handles, opening toilets and exploring the upstairs of the house with an enthusiasm like it is an undiscovered corner of the Amazon, all the while silent except for the occasional shriek of delight or frustration.

As part of the acceptance of his IDIC15 diagnosis, I would say that the likelihood that Matthew  will be non-verbal has been one of the most conflicting and difficult to come to terms with.

In conversation about Matthew, through blissful ignorance or naivety, some have told me that must we stay positive and in his own time he will talk and those words will come. Some fail to understand how freely I accept the situation, confused that I have given up on what is the most basic of childhood skills, I have been told I am being negative for giving up on speech and that I must hope and one day it will happen.

Sometimes I will explain the logic, that by accepting the likelihood of Matthew being non-verbal it allows another part of the grieving process to be fulfilled, by accepting it doesn’t mean I do not hold hope, bloody hell, that remains constant and will never fade but a bizarre irony means I accept, yet hope, and will do everything possible to make the “impossible” happen!

If it doesn’t, I am comfortable as I have hopefully already conditioned myself and reached acceptance, if does, well at that moment I will probably explode with pride, joy and a few tears too.

Yet not speaking does not mean he does not communicate, in the relatively short time since diagnosis I feel that we as parents have become attuned to non-verbal communication in a way I never before understood possible, being led by the hand to the general area of something Matthew wants, he doesn’t point at objects so the guessing game starts there, left too long and the frustrations can so quickly take over him.

Shrieks, grunts and squeals, incoherent noise to an untrained ear yet somehow so quickly can be understood and help to decipher his complex needs and wants, preventing an inevitable melt down.

So, back to those 3 small words! Love. You. Daddy! He cannot utter those precious words, that phrase that I long for yet I accept he may never speak, so does he? The hugs and cuddles tell me de does, and that for me is worth a thousand words or more.

Too often kids are told,  to “Be quiet”, to “Shut up”, “Silence” with that old adage of children should be seen and not heard, well b***cks to that! Let’s let them be kids, to use their voice and let’s cherish every word.