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.