Growing up too slowly… or not

The thing about having a child with ‘the A word’ is that on the really tough days it can be hard to see beyond the things your child can’t do.

You try not to do it, you beat yourself up about it and you feel horrendously guilty for falling prey to it, but yes there are times when the fact that your lovely little person can only say a few words and phrases, still looks wobbly on their feet at the grand old age of three and will only eat meals involving either cereal or pasta (or anything beige) that are the things that you focus on.

Rather than the fact they are pointing out what they want more, will fetch a bowl or cup to tell you they’d like a snack or drink, have become confident enough to actually walk for a spell on the school run and have made a special friend at nursery.

It sounds terrible, but it’s something we all do.

With NT (neurotypical) Mini-me I absolutely felt the pressure to start and smash it with potty training when friends began turning up to play dates having ditched the nappies. So it’s not really surprising that I’m finding it hard that Blue-eyed boy shows absolutely no interest in this area whatsoever.

My more relaxed friends tell me to quit worrying and ‘let things happen when he’s ready’. All good advice, unfortunately in my over-analytical tumble dryer of a brain, it’s hard to just let things lie and pick my battles.

I find myself fretting over the fact that Blue-eyed boy is still perfectly happy sleeping in his cot, when some of his pint-sized mates from the baby days are now on their second bed.

I wonder if I should stop giving him a dummy at night time – despite the fact that some NT children I know used one until they were well past five.

I see pictures on Facebook of other children grinning into the camera and it genuinely feels like they are from a different generation to my gorgeous little man.

But down this road only heartbreak and parenting madness lies.

Recently I got chatting online with some other parents of autistic children and their experience and feedback was hugely helpful to me. As was knowing that I am far from alone with all of the above.

One thing a couple of them told me really resonated, and helped me to start looking at things from a different angle.

We all complain about our children growing up too fast, they said – well aren’t we lucky that our little ones with ASD stay in the moment for a little longer than the rest.

When I look back on those long-ago days when Mini-me was a baby I can see myself in her tiny first bedroom singing and rocking her to sleep and it’s almost like looking at a different parent.

I can remember delighting in her first sentences, seeing her cheeky sense of humour emerging almost as the words tumbled out of her mouth trying to catch up with her. But it’s hard to mentally time travel back to those precious, fleeting memories.

Now our almost six-year-old resembles a teenager sometimes more than she does a little girl, so advanced is her confidence, her rebellious streak and her wealth of witty comebacks. And that’s wonderful in its own way.

But our Blue-eyed boy still comically sticks his bum in the air when he sleeps, like they both did when they were babies.

His eyes light up and he toddles across the room to me when I pick him up from nursery.

He loves a cuddle in front of ‘vintage’ episodes of Ben and Holly.

His favourite thing to do is often to listen to me sing him nursery rhymes and then join in.

And he still finds playing peekaboo hilarious.

So when those ‘can’t do’ worries and fears enter my mind I’m going to try to instead focus on the moments that may be long gone with Mini-me, but are happily still very in the present with my beautiful Blue-eyed boy.

And be thankful.

Compare, Contrast, Combust

You might have noticed (or more likely you probably haven’t) that it’s been a fair few weeks since my last blog ramblings.

It’s been a hectic time, juggling a busy, varied and ‘just the right side of stressful’ workload, the school holidays, other mini life niggles such as a delightful infected wisdom tooth and accompanying balloon face (attractive) and what I have been referring to as ‘family health issues’.

A few posts back I hinted that Blue-eyed boy is currently battling several health and development challenges, and recently the worry surrounding these has started to ramp up. Mainly because I find myself brooding on things more.

Blue-eyed boy has always been a fighter right since his conception.

There was the miscarriage, the awful scan where we were ushered into a private room and told that he might have a chromosomal condition, possibly one that could be life threatening, the invasive tests to find out whether this was the case or whether his heart was weak, the scans at the specialist hospital department and then the ‘all clear’.

Although this was followed by the caveat that in such cases as ours there is always a slightly higher chance of the baby being born with a health issue than what they refer to as ‘the general population’.

Even after this there was the nagging worry that followed us up right the day of his birth and the sheer joy at his arrival that followed.

Now considering I know people whose children have bravely battled cancer, others who have taken rounds of IVF in their stride and others who may not be able to have kids at all, I don’t for one minute think that hubby and I had to cope with that much – but I have always privately felt that Blue-eyed boy is my miracle boy.

And this means that, I suppose, we’ve wrapped him in more virtual cotton wool than we did with Mini-me.

When he was late to sit and walk and never really crawled we worried lots.

When we realised he couldn’t hear and had suffered with bad glue ear for most of his first two years we stressed out loads.

And when he used to cling to us and sob furiously in unfamiliar social situations we were concerned he might never find his feet.

But when he finally took his first tentative, wobbly steps at 19 months we whooped furiously.

When he had grommets fitted and we were told his hearing was now, probably for the first time, back within the ‘normal range’ we celebrated.

And when he started to babble, grow in confidence and even say the odd word, we were almost beside ourselves.

I guess because he has been through a fair amount, it makes every little milestone hurdled that little bit more special.

So now he, and we, are facing the next set of challenges.

The fact that Blue-eyed boy is a fair few months behind in terms of development. The fact that there is a long road ahead when it comes to him learning listening and conversational skills and, hopefully, catching up with his speech.

And the fact that there may be something else to contend with – possibly an autism diagnosis, possible a motor or sensory deficiency…

The good news is that he is doing amazingly well, continuing to battle like he always has. In fact I couldn’t be more proud of my little boy with the big eyes and the beautiful smile.

The thing I’m struggling most with at the moment is all down to my own issues and actually a trap that many parents fall into – the curse of comparison.

I hate myself for doing it, even though it’s only human, but sometimes I can’t help brooding on the fact that other children the same age as Blue-eyed boy are toilet trained, sleeping in proper beds, no longer using high chairs and chatting away with the best of them.

I worry, even though it’s far too early, that he may never get the chance to go to mainstream school or enjoy all the opportunities that Mini-me undoubtedly will.

I wish for a clear diagnosis of his condition so we know exactly what we are dealing with, but other days I dread the thought of it.

Personally I think that no good ever comes of comparing your child or yourself as a parent to others. In my experience it only leads to negative brooding and madness.

Do my children have too much ‘screen time?’

Do my children eat enough fruit and vegetables?

Do my children behave as well as their friends?

Do they spend enough time outside?

Do I shout too much – or too little?

Am I patient enough with them?

Will I ever get the work/parenting balance right?

Blah, blah, blah, blah, bleurgghh…

What I’m going to try to do instead is focus on all the good bits, with none of the lining up against stuff. And not look too far ahead.

And also take the good advice a friend of mine gave me today…

‘Look, if they’re still alive at the end of the day and you haven’t gone insane I consider it a good sign!’

Sounds a pretty good parenting motto to me.