IDIC15 Family Meet.

meetup

Meeting the wider IDIC15 family for the second time over the weekend was once again a brilliant day out and a fabulous opportunity to chat with families who have so much experience on this journey, it also gave the kids a fantastic facility to let loose and have fun.

No longer the “newbies” in the group, I noticed the same emotions of apprehension and also of hope when speaking with one other dad, who said he gained so much hope from our experience so far and seeing Matthew charging around with his curly blonde locks bouncing all around gave him a sense of positivity for the future and testament to how important these days are.

A day that would not have happened had it not been for Unique and their support and most definitely not but for the incredible efforts and enthusiasm of Emma who co-ordinated and arranged the day with such detail, so on behalf of my family and no doubt all others who attended a big thank you to Emma, a truly remarkable mum and a real inspiration.

We are already looking forward to the next event and catching up with people who I hope will become lifelong friends.

 

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Holiday Blues

 

So, as I type this I have recently returned from a fantastic week away in Majorca with a fading tan and a lot of bug bites and some brilliant memories of a sun drenched break with the family.

It was the second holiday abroad we have been fortunate enough to take Matthew away on, and realising that with his complex needs it may not be so simple as he grows up and is no longer just that energetic toddler as he is at the moment, but that part is for the future, so we cannot worry about that just yet.

For me the holiday was a fabulous experience, allowing me to spend quality time with my kids, allowing them all to experience new things and have a degree of freedom not afforded to them at home. It was a joy to watch the girls improve in confidence and ability at swimming, for them to try a variety of foods they would not normally touch at home and for Matthew to run us ragged with his boundless energy and dive fearlessly, head first into the pool over and over again (I was there to catch him).

As expected there were sideways glances and hushed whispers from other families, as they saw Matthew gain sensory comfort from his need to head butt us (usually gently), be it in the hotel restaurant, by the pool, in the bar, wherever. The unusual surroundings affected him quite profoundly at times, and considering the noise and bustle of a holiday resort in peak season he coped remarkably well.

It was also the first time in a while where I had been exposed to a greater extent to the wider world and children of a similar age to Matthew and seeing  this the reality hit home. I know and accept Matthew’s differences and love him just as he is, but when those timely reminders arise it is hard not to look on, even if it is just briefly without a little tinge of sadness, though definitely not bitterness.

One afternoon I was out on my daily stroll around the streets of C’an Picafort with Matthew in an attempt to put him to sleep for an hour or so  I noticed a father and son playing football on the pitches at the back of the hotel. The little lad all togged out in a Barcelona kit and of similar age to Matthew was charging up and down the pitch with boundless energy, cheering loudly when he scored a goal. I would be lying if I didn’t say I had to swallow hard at that point, something I just expected I would do with him at this age added to a list of maybe one day.

Back by the pool, children far younger than Matthew toddled around with freedom and confidence both in and at the side of the pool, we constantly hand held through fear he would trip, fall and hurt himself. Parents looked on inquisitively as Matthew shrieked with delight jumping as I pulled him through the water with an evident curiosity as to why he did not speak.

At the airport on the way home, the queue for check in was long and likely to be a good hour wait, speaking with an airline rep I asked if the pre-arranged special arrangements for priority check in etc. could be used and we were immediately ushered to the front of the queue. The gasps of disgust from those nearby were almost audible above the hustle and bustle of airport noise and the judgemental looks and face pulling was all too evident, priority being Matthew at this stage I smiled and did my best to ignore it and took it as a lesson in the world we now embrace.

So reflecting on what was a fabulous week away although I was greeted at times by people who stared, reminders that made me want shed a tear, though these things just make me stronger.

The week gave me a chance to bond with the kids and a reminder that Matthew, despite all his challenges, this amazing little chap is so determined, so funny, has a character that is adorable and can make even the brightest day on the Med even brighter. His sisters, despite their sibling squabbles are his guardian angels and Debs is just incredible for doing all she does day in day out while I am at work and still come out smiling when I get home.

 

 

 

 

 

Brief Observations Two Years On

This week is exactly two years on from that first experience of the crushing pain you feel in hospital when you get news you don’t want to hear. A lot of water has passed under the bridge since we were sat staring at the walls of the children’s ward, dazed and confused for the best part of 3 weeks and I have learnt a lot about myself in that time and a little bit about being a “special needs” parent and the stuff that crops up.

  1. Diagnosis day hurts! – More than firm kick square in the bollocks! Nothing quite prepares you for shit like that and the sheer scale of that moment. Those two days  (the initial West Syndrome diagnosis and subsequent IDIC15 a few months later) will forever be etched in my mind,  the waiting, the room, the pain and the sense of bewilderment and a million questions that follow. That initial pain does subside and a sense of “normality” does follow, it has to for the sake of your family.
  2. Don’t be afraid to ask!  –  I would rather someone be educated and aware of chromosome disorders and related topics such as autism than stand there and judge, assume or ignore what is going on around them.
  3. Don’t be embarrassed! – If you do ask and I explain, don’t be embarrassed when I answer, there is nothing to be embarrassed about! Yes, Matthew has a rare chromosome disorder, he is non-verbal, he has habits and quirks that some may find strange, but heck haven’t we all?! I have seen a grown man attempt to slyly pick his nose and eat it in a business meeting, now that is strange!  That is the way he is and we love him, we are not ashamed or embarrassed and no he is not a burden, with the journey that little superstar has been on we are mega proud of him.
  4. It is OK not to understand! Before we were parents to Matthew and thrown head first into the world of special needs parenting, I didn’t understand either and we won’t judge you if you don’t. Autism was a mystery as I have said in other blog posts, we had never enountered it and I accept you may not have either, so back to points 2 & 3.
  5. Pity at your peril! – This is as bad as a judgemental sneer, we do not ask crave nor want pity from anyone, it is patronising, offensive and quite frankly it sucks.
  6. That judgemental sneer? Don’t even think about it!
  7. Yes Matthew shows autistic traits. No he is not like Rainman – he is Matthew, nor have we found his “special talent” (Refer again to points 2 ,3 & 4).
  8. Parenting advice on Matthew? Give at will, we will probably smile politely and file in a mental bin with the statements from point 7.
  9. Our social life is dysfunctional! Yes we would love to go out for dinner, join friends for drinks and all that jazz but sometimes it is not that simple! Keep us on the invite list though, you never know, we may be able to make it! If all else fails then maybe pop in and do the social thing with us – the door is always open (well actually it’s not, as Matthew would be off down the street, but you catch my drift).
  10. You think your house is toddler proof? Matthew and your house contents will be fine if we visit!? You reckon? Five quid says he proves you wrong in the first 10 minutes! Back to point 9, sometimes it is just easier to come to us.
  11. Matthew’s hospital file! This thing is big, like really big, weighs a ton and probably requires a risk assessment for lifting and carrying to be carried out everytime it is brought out of storage.
  12. Never, ever run out of tomato ketchup!
  13. Or pitta bread, pizza, leftover and frozen lasagne/pasta, petit filou or fruit pouches!
  14. Doors, wheels, musical toys and water! A godsend (except the doors which are hazard) in their own right, each have a magnetic attraction and keep him happy for hours.
  15. That kid knows no danger! This is not just normal toddler danger, I have seen toddlers do their thing before, we have raised two and been scared to death at times, but this kid knows no bounds. (Oh, and since starting writing this blog post the little monster has discovered how to escape from his cot!)
  16. He never stops moving! A bit like point 15 in that this is not like typical toddler energy, when he is awake he is moving, exploring and trashing one or more rooms in the house.
  17. Hand dryers are the work of the devil! Seriously, although they hardly create the heat of Lucifer’s lair, the noise and roar is obviously like depths of hell! The mere sight of one will lead to thumbs thrust immovably into ears and one overloaded kid.
  18. Meltdown imminent? Give him some space. It is not that he dislikes you, nor is he being rude or naughty, he is overloaded with sensory stimulus and needs his safe place.
  19. Special siblings just get it! Our daughtersThey have a mutual bond, devotion and trust with him that cannot be broken, they see him just as their little brother, Matthew, nothing more and nothing less, the support they offer is amazing, these kids seriously rock!
  20. Little things matter! A smile, eye contact, a cuddle, a milestone met or inched towards, a new action, noise or non-verbal communication are all massive and greeted with excitement.
  21. Other special needs parents are amazing! Amazing, inspirational, welcoming strangers who have become friends.
  22. Finally – If you get attention cherish it. Now it’s not that Matthew isn’t affectionate, he is, very much so. He is just selective over who to, where and when, so don’t be offended if he avoids you like I would a plate of quiche!  If you do get those special moments, embrace them, trust me, it’s worth it.

 

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.

 

 

 

 

 

 

Our Young Carer – #superstar

I recall in a recent post I referred to the struggles of our eldest daughter and her ever willing attitude to help us as an additional carer to Matthew, a stance she still adopts and seems to take pride in.

Since we first found out about the young carers groups late last year we have attempted to get our daughter to attend but with little success, often painfully shy and fearful of the unknown she went from interested to unsure to point blank no and back again on a weekly basis.

Certain of the positive results that the groups would offer her, we constantly gave her positive vibes about the groups along with subtle encouragement to get her through the door for the first time. However with a busy schedule and her reluctance we put it on the backburner over Christmas and in the early part of New Year.

Eventually I decided to take the bull by the horns, came home from work early last Thursday and suggested I took her down there and we had a look at the fortnightly music sessions they held.

I was met with stubbornness, defiance and tears, disappointed at the wasted afternoon I resigned myself to try again another day as she came down from her room dressed in her pyjamas rather than the change of clothes I had expected. She explained that she didn’t see why she needed to go for time out away from Matthew, she enjoyed doing her bit and that was that. Very admirable I must admit, but this was for her benefit and I didn’t want to let it go.

After much persuasion and a cast iron guarantee that I would not leave the building and that she could leave at any time she finally agreed to go, step one accomplished!

Step two, getting her out of the car and inside was surprisingly easy, holding my hand tight and as quiet as a mouse we were met by staff who immediately made her feel at ease. Highlighting how incredible she was for all she does at home the carers trust worker immediately brought a shy but visible smile to her face, step 3 accomplished.

Step four, getting her to get involved was instant, already possessing a passion for music, especially the guitar she quickly  settled and was absorbed at learning new chords and the shy smile got bigger.

When she went to another room and was greeted by another staff member (again with a guitar) and invited to sit down and join in a sing song, she was in awe as she listed to her favourite Taylor Swift and Little Mix songs be sung in front of her, she even began to join albeit ever so quietly.

Next was a drum kit, going from a few nervous taps to full on Reni (Stone Roses) wannabe in a matter of minutes, she made me proud and I hoped that she was enjoying it as much as I was and that her smile was genuine and not forced, it was definitely the former.

As the session ended she was shown the room with the DJ decks where she could mix music and make her very own song, she pleaded that she be allowed to have a go, much to her disappointment that has to be reserved for the next session, but it gives her something to look forward to and a reason to go back.

Leaving the centre I felt relieved and proud as she told me that she couldn’t wait until next time, mission accomplished!

Hopefully it was the first step along the line for her to a support network that can help her in years to come, new friends and the opportunity to practice the musical instruments she loves so that she gets her own time and escape. Her practice on the guitar is usually comically interrupted my Matthew and his sensory desire for the noise it makes and the need to touch it.

Fingers crossed the carers trust groups will provide her with a much needed diversion away from the day to day life at home, she deserves it and that she will increase in confidence with every session, one thing is for sure is that the young carers groups really are invaluable resource that we are incredibly grateful to have access to.