Just like any other toddler….

matttable“Just like any other toddler”

A phrase that often crops up in conversation with others and we talk about Matthew, his progress and the behaviour he exhibits. I guess a lot of it is not knowing what to say, an awkward embarrassment or possibly an attempt at empathy as we explain his needs, his day to day, the strict routines we have become accustomed to and the evident behavioural and development differences he shows.

I get the sentiment, but we are over the delicate stage now and fully accept who he is, how he is and all that comes with it, it is not that we want to highlight those differences but we do accept them and all they entail. So there is no need to pretend that somehow he is just like yours were at that age, or are right now, we know he is different and we are immensely proud and love him just the same.

Yes, Matthew is a toddler and all toddlers have energy, a lack of fear and sometimes play up for the crowd as they know they will elicit a reaction from a parent and sometimes get their own way which has been justified by positive or negative reinforcement accordingly.

Having been through the toddler stage with our two daughters, I know how they pull strings and have a mind as sharp as a tack in order to get what they want, though with Matthew the playing field is much different and his actions seem to be based on instinct and that moment, and saying “No” doesn’t really work and is unlikely to get him to stop in his tracks as quite simply he doesn’t understand.

It is not a case of ill behaviour on his behalf and I hope it is not through failure on ours as parents, we know his mind is wired in his own unique way and that is what makes him so special and adorable.

We sometimes struggle to recall what it was like with the girls at the same age, our routine today is our norm, but looking back four years or so on Facebook serves as a reminder of just how different things truly are and seeing the activities the girls did at the same age and the milestones reached really enforces this difference from then to now.

At three, a “neuro-typical” child is well on the way to understanding the differences between right and wrong, the consequences and the dreaded naughty step. With Matthew he has a single mindedness that goes beyond this but a single mindedness of pure innocence, borne of curiosity and of impulsiveness that says that toy needs to be put down that toilet pan right now, or that bird bath full of water is more interesting than this toy, that can go in the pond! (both real life examples by the way)

He does not understand the consequences, once that trigger has been flicked it takes a quick mind and slight of hand to quickly divert his attention to something else much less dangerous, something that defiance aside could be avoided with the girls.

To say he is like any other toddler also does him a great injustice, this is a kid who cannot speak a word yet somehow manages to make his needs known, stop and think about that for a second. A toddler of three years old, a curious stage of life which is all about asking questions, finding answers and exploring yet unable to ask a single one. We do not know if he has questions to ask, we do not know exactly what his needs are at times but with guesswork and persistence we get there.

If he does have questions what are they and is he frustrated that despite all those noises he makes he can never utter those words that he hears from others all around him each day? There are times when you can see an expression of excitement etched on his face that he so wants to tell us something, mouth open ready, eyes wide with enthusiasm he will take us by the hand to show us but alas no words to explain.

He has just these past few weeks found his voice in a big way and has discovered the power of the screech. He wants it so he screeches, squeaks and squeals, a big moment for us and one for him too as he has discovered it works and that clapping his hands gets results too, we are working on him identifying a cow, pig and a sheep toy at the moment and it seems to have grabbed his attention, though this may be more down to him finding my amazing cow impression hilarious (it is pretty good).

Like many of Matthew’s “chromo brothers and sisters” he had to overcome incredible odds just to be here. They say a baby is a little miracle, so what does that make Matthew and his 15q peers? From conception and that duplication on 15q his path was set, yet he passed through those critical gestation periods carrying this duplication, defying those incredible odds and arrived in this world ready to fight and fight he did! From stopping breathing at four weeks old to seizures and high doses of medication with brutal side effects he has battled it all so far.

So no, no he isn’t like any other toddler, he (and all those other remarkable kids with a chromosome disorder) is so much more, he is a real little hero and one we are so immensely proud of.

 

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Happy Birthday to This Kid…

 

Happy birthday to this kid!

This kid, who will wake up this birthday turning three years old, yet will be oblivious to the pile of presents and that await him. It is likely he will leave them untouched and wrapped, unaware of their significance and the significance of the day, yet we hold hope that maybe next year he will.

This kid, who despite his love of cake will not get to blow out his three lit candles, but we will do that for him with the pride and enthusiasm a cheeky three year old deserves.

This kid, who will not care for a party but we will give him a small and quiet one anyway just to mark the day.

This kid, who despite the odds and battles has stuck two fingers up at medical diagnosis and come back fighting.

This kid, a curly blonde whirlwind who frightens us half to death with his fearless antics.

This kid, an affectionate little monster whose love is without motive and so genuine.

This kid, who although he cannot speak a word can light up a room with laughter and find a way to make his needs known.

This kid, our pride and joy, our Matthew.

Happy birthday to this kid, to Matthew our special little prince.

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.

 

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!”