Let’s Hear It For The Siblings

When you have a child with additional needs, whatever condition they may have, whatever those needs might be, it soaks up a hell of a lot of your time and energy.

And that means there’s not as much of you to go around as a parent – both mentally and physically.

I’ve been thinking about this a lot recently because it’s hit me just how much Mini-me is having to cope with at just six. Sometimes this makes me sad, but mostly it just makes me really proud.

Mini-me is a chatterbox, a little diva, a performer who loves dancing around the lounge to Justin Timberlake or copying the moves on Strictly on a Saturday night. She mostly seems carefree and happy, as she absolutely should at her age – but the truth is that she copes with much more on a daily basis than many children will ever have to.

She’s loved Blue-eyed boy with a fierce protective streak since the days when she used to pat my pregnant belly. I remember the delight in her eyes when she came home from my parents’ house to find the new playmate she’d longed for had finally arrived.

Since those early days of being parents to two gorgeous children we’ve watched an unbreakable bond develop between them. They play together, squabble together, chuckle together and hold hands in the back of the car every single day.

Their personalities both completely contrast but also complement each other, and Mini-me has undoubtedly helped Blue-eyed boy more than she will ever know with his confidence, his happy character and his love of life and people that isn’t always a given when it comes to the A Word.

Mini-me is years away from being able to walk to school by herself, yet she knows and understand the word autism. She knows it means that her little brother finds it hard to speak, gets overloaded with noises, colours and people sometimes, is still in some ways more like a baby than a three year old and that he might not be able to access all of the wonderful opportunities that lie ahead of her.

If you ask her she’ll explain all this to you, not in these exact words obviously, but her compassion for and acceptance of this life-long condition that now affects all of us is truly amazing.

She also loses out because of the A Word. She doesn’t always get the best of us because Blue-eyed boy sometimes needs more time and attention, she often gets told: “In a minute…”, because we’re doing some task for her little brother and she hardly ever complains.

She is desperate for Blue-eyed boy to go to her school with her, to have her official school picture taken with her brother like many of her friends have in the past few weeks, and the plain truth is that might never happen.

In many ways having a sibling with complex needs will make life more tricky for Mini-me, but I know she’ll also gain a lot from it too. She already has compassion, kindness and understanding beyond her years, and hopefully that will aid her in her life ahead.

In the meantime we’ll just be grateful for what a remarkable little human she is growing into – and get up to dance with her to Justin for the tenth time that day, even if we don’t feel like it. After all she’s earned it.

 

 

 

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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.

#We’reStillWithHer

Last night as Mini-me and Blue-eyed boy were getting ready for bed I started having a chat with my lovely girl about what would prove to be a momentous day – for all the wrong reasons.

It went a bit like this…

“Tomorrow when you wake up hopefully something amazing will have happened?”

“What? Will it be about chocolate Mummy?!”

“Um, no, better than chocolate. If things go the way we’d like and all our friends would like you’ll be going to school with a woman having gained the most powerful job in the world. That’s really great isn’t it.”

“Why Mummy?”

“Well it means that if you work very hard and treat people with kindness and respect you can grow up to be literally anything you want to. If you wanted you could be Prime Minister of this country.”

“Um, okay… Can I have the iPad for 10 minutes before I go to sleep?!”

Well, it would be a bit hard to expect a five year old to fully grasp the importance of what was, until a few hours ago, a seemingly very real possibility.

The terribly sad thing though is that now Mini-me may not grow up knowing Hillary Clinton’s name, or body of work, or 30 years of service to the American people.

She will of course be all too familiar with a certain orange-hued idiot who whipped up the entire globe into a frenzy over joking about sexually assaulting women, made highly questionable comments about women and people of different races in general, and appeared on a national debate stage without, to my mind anyway, saying much of substance at all.

Unless of course you think the best way to defeat Isis is to have a ‘really good, effective policy plan’ but not tell anyone any of those all-important finer details because then you’ll be, what was it, giving the game away.

Oh and immediately getting rid of affordable healthcare for everyone in your country.

And building a wall to keep out ‘rapists’, and banning an entire religious people from your shores etc etc

Today I, and many, many people we know, feel as despondent and despairing as we did months back on June 24. But it’s even worse than that.

Instead of telling my girl that Hillary Clinton has achieved the near impossible, I can only tell her that it was, in fact, impossible.

I could tell her about the ‘victory’ of the politics of hate, division and fear. I could tell her that America apparently isn’t ready for a woman to run its country. I could paint the picture of a man who got into office in all probability on the basis of promises he now can’t keep and a nation of people irrevocably and violently pitted against each other.

But I’m not going to.

Instead I’ll choose to tell her that sometimes we have to take a different path than the one we hoped for and thought would happen.

I’ll tell her about the woman who, whatever your view of her, tried her best to be a symbol of hope against a vision of hate and isolationism.

I’ll show her videos of Michelle Obama speaking eloquently and with passion and pride and hope with her that maybe she will stand in four years’ time.

I’m still hopeful that when Mini-me is nine she can watch, like I did back in 2008 when Barack Obama made that amazing speech, history being made for all the right reasons.

Because yes we can, we still can, if we keep on believing.

 

 

Hairdressing – With A Side Of Honesty

Since having kids one of my favourite things to do is going to get my hair done.

Yes of course covering the ever-thickening grey strands with a healthy dollop of artificial colour is a highlight (forgive the coiffeur humour!) but actually the best bit is sitting down for an extended period of time with people bringing me magazines and hot drinks.

A rarity these days, to state the bleeding obvious.

The thing I’ve never been that keen on about the hairdressers however is the chit chat, the small talk etiquette of it all.

For some reason I get really paranoid that I’m not giving the hairdresser good value in the chinwag department. Do they want to talk? Are they sick of talking? Why do the stylist and customer over there appear to be actual besties when I can’t think of anything interesting to say?

It’s bloody ridiculous, but sometimes I get so tense about the ‘awkward silence’ that I’ve sunk as low as asking my hairdresser about their holiday plans! I know that’s supposed to be their line but there’s only so much conversation you can have about the current state of salon straighteners…

What is even worst though, and I know I’m not alone here, is dragging the kids to have their tresses trimmed. There is literally nothing so stressful – except perhaps making them have their feet measured, or getting them to stop running around in cinema.

Thankfully these days now that she’s five Mini-me has quite taken to it all. Mainly because we’ve started going to a new place where they use ‘princess glitter spray’ and because I let her watch the iPad.

Blue-eyed boy however is another story.

Not only does he HATE the hairdressers, but ‘The A Word’ means that any outing to the barbers is now fraught with even more stress and, well, just basic hideousness.

We start gearing up to it several hours (or days) before actually leaving the house and only then attempt the trip armed to the gills with snacks little man is happy to consume this week, with at least a couple of episodes of Twirlywoos downloaded onto phone in case, horrors!, the Wifi signal doesn’t work.

Once I’ve actually got him in the chair, I then have to plonk Beebies entertainment directly in his line of vision, plead with hairdresser not to obstruct view with brushes etc., have snacks open and handy just in case of need, and all this while simultaneously holding Blue-eyed boy’s arms down so the snipping can actually take place.

And god, the bit where they try to cut around his ears, or use the clippers. Let’s not talk about it or I might start getting emotional!

The sensory issues triggered by his ASD mean that Blue-eyed boy hates certain materials and the feeling of them on his skin, so trying to put on the bib protector thingy is a total non-starter and can cause him real distress.

He also hates having water sprayed onto his hair, the feel of the scissors, the hairdresser actually touching his hair, and any residual noise interfering with his enjoyment of Great Big Hoo and gang. So a fun time is guaranteed for all.

On our visit this week (put off I might add until my poor child was sporting an actual mullet) I decided to try a new tack – honesty. It’s all part of the adapting to ASD you see. I figure I’m going to have to explain Blue-eyed boy’s condition so many times in the coming months and years that I might as well start as I mean to go on.

So when the hairdresser expressed surprise that little man didn’t like the dinosaur cape that usually goes down a storm, and in fact screamed the house down when confronted with it, instead of mumbling something about him ‘having a bad day’ I told the truth.

I told her that my son has autism, that he’s been recently diagnosed so we’re all still getting used to it and that his symptoms on any given day can include: chewing his clothes, having a meltdown if a piece of fruit he ate yesterday is put on his plate, slapping away other children if he feels they get too close and using language sparingly and only when he feels like it.

I said that ASD is actually very common and could even affect up to one in 60 children. And then I apologised if all this would make her job a bit more difficult than usual on this occasion.

Not only did she not mind, she was actually interested. She took account of what I’d said and tried to make Blue-eyed boy as comfortable as possible. Working together we even managed to keep him in the chair long enough for a pretty respectable cut.

So the upshot is that I think I’ll be sticking with this new honest approach to hairdressing – and other outings.

It just probably won’t extend to not stressing out over small talk etiquette.

The New School Rules

So here we are three days into the first week of ‘back to school’ and it’s becoming abundantly clear that things aren’t what they used to be…

Forget the reception classroom home corner – the days of Mini-me playing Mummies and Daddies with some poor unsuspecting five-year-old boy could be over, or at least numbered.

You see we’ve entered the ‘grown-up’, slightly more structured world of Year One. Which could be good news for Mini-me’s male classmates, who she seems to rotate in order of who she fancies marrying on any given week.

I’m reliably informed that you instruct the ‘lucky’ recipient of your affections of your plans to get hitched – and then watch as they sprint across the playground. Which is good news for the other half bearing in mind that he says boys are not allowed until she’s 27.

Anyway, it looks like Year One is going to be a steep learning curve for us parents too.

Here’s what I’ve swotted up on so far – perhaps you’ve found the same…

 

  1. Your offspring will no longer cry as they line up at the start of the day. You in fact will be the one shedding a few stray tears, because ‘Don’t they look grown up…’ (cough, sniffle.)

 

  1. Your child will start mentioning actual proper lessons like ‘literacy’, which will weirdly remind you of the time you asked your gran to help you with your algebra homework and she just looked vaguely panicked. Is it possible your kid will soon be asking you complicated questions about verbs?!

 

  1. On the same note you will answer the question: ‘Mummy, what’s dividing’, with something that would not have satisfied Johnny Ball. (Remember him?!)

 

  1. You will be amazed that your child can not only tell you what they had for lunch but is also happy to chat for a couple of minutes about their day. You put this down to it being the first week of school and presume that by Monday it will revert to: ‘Can’t remember. Can I have another snack?’

 

  1. You are proud of the fact that you have been on time for three days in a row. Hopes that this will continue into week two are of course fruitless and soon you will be back to sprinting down the road and trying to vault the playground fence in a time of 36 seconds while towing your poor offspring behind you.

 

  1. You’ve started wondering about things like ‘mixed ability sets’ and what exactly your child will be doing in their ICT lesson while hoping that they don’t reveal to the teacher their iPad addiction to Horrid Henry.

 

  1. Talking of Horrid Henry, you’ve tried to justify the fact that you ate dinner in the same kitchen as your child last night while both plugged into your own tablets with thoughts that they ‘really need some chill out time’. (Otherwise known as parent rediscovers the Cold Feet box set.)

 

  1. Although you’re not enjoying the unseasonably humid weather you kind of hope it stays that way so you can get some wear out of Mini-me’s two new summer dresses (which don’t need ironing.)

 

  1. You feel guilty about the fact that your friend told you their house was eerily quiet and they were missing their child, while you secretly revelled in the silence…

 

  1. You enjoy looking at all the obligatory ‘kids in uniform on front step’ piccies on Facebook and remember with amusement the many years when it REALLY bored you senseless.

 

  1. You have a long and most enjoyable coffee outing with your close mum friends and thank god that ‘therapy at the school gates’ is now a daily fixture once more.

Juggling with Melted Balls

We’ve reached the ‘Holiday Hump’ in the Neat Freak Household.

As in everyone is in one and not only are some of us counting down the days until school starts, it’s now officially okay to mention this fact in hushed tones to parenting friends on the same wavelength.

After all nothing makes you feel more guilty as a mum than to hear someone say they are embracing the sheer joy of every single precious family moment, while you’re ‘cooking’ (hiding) in the kitchen furtively watching Gilmore Girls on the Kindle.

(The iPad is of course being monopolised by pint-sized family members.)

And nothing makes you feel better – or perhaps it’s just me – when another mum tells you: ‘I cannot bloody wait until September 5th!’

Anyway the mood has soured a little more this week with the arrival of soaring temperatures.

Now don’t get me wrong I like sunshine as much as the next person, but personally I prefer warm to sizzling, and slowly melting while fighting with Mini-me over the need to slather her in sunscreen at 8am isn’t my idea of a good time. Or hers.

Bless hubby though, he bought me a lovely family calendar for the kitchen – you know so I can keep on top of four peoples’ schedules like an (unpaid) PA and (most importantly) his beloved West Ham fixtures.

I may have slightly overreacted when I noticed that it was made by a company called ‘Organised Mum’, with a fetching logo of a smiling mother juggling a large number of balls.

‘FFS!’ I texted BFF. ‘Are men incapable of writing on family planners?!’

To my mind it’s the same flawed pigeon-hole thinking as those ridiculous toy manufacturers who assume that all girls like pink dolls and would never want to play with racing cars.

Now clearly men are not incapable, and the other half would probably happily take charge of the family schedule.

It’s just that I have nicer handwriting and actually know important dates that don’t involve a team of overpaid footballers doing battle with Scunthorpe United, or whoever it is they are playing this week.

No it’s the Holiday Hump coming into play.

That and the fact that hubby sent me a ‘helpful’ email itinerary for departing on our much-needed cottage holiday earlier, along with a delightful text reminder to pack everyone light layers…

All too soon I, and all the mums I know, will be back to having to stay on top off a multitude of dull daily details, such as whether there are enough clean socks to last the week, what inanimate object Mini-me has chosen to talk about in show and tell (‘No! Not another Shopkins!’) and when I need to start stapling silver foil to something for the probably quite likely occurrence of ‘Space Mufti Day’.

And that’s a good thing – after all it means we’ll all have survived the summer holidays in one piece.

It would just be nice if someone could turn down the heat a little and remember to chuck a super-sized bottle of Gin for me in the car tomorrow along with the rest of the packing.

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.