Everyday moments

Recently I read a blog that sympathised with parents of toddlers. With that relentless grind of constant attention needed day after day after day…. and it said: hang in there, this will pass, they will give back as well as receive and, one day, may even make you a cup of tea.

I had a brief ‘woe is me’ moment at that point as, whilst I can see that with Emma, with Alex… let’s be honest, it’s doubtful, we’ll always be caring for him.  This will always be a one way street.   Then I realised how unfair I was being, how far he had, in his own Alex way, changed and, well, grown up.  As only Alex can.

Breakfast, in fact every meal, used to be a huge rushed affair as, the moment he realised it might be time to eat he would SHOUT until food arrived, rushed, unloved into his mouth.  Phew.  Peace.  This was stressful every every day.  These days he’ll play quite happily till it’s ready, either in his highchair or down on the floor with his toys (and shredded magazine and socks).  We are left playing catch up with him as we still haven’t got out of the mentality of Hurry it UP! But he will wait.  This makes an enormous difference to life as stress levels come down and more interesting meals can be made. (Though mainly when Emma isn’t with us as she still prefers ‘No Sauce’ and ‘Bland as you like’, thank you Mummy…).

I don’t have to ram his rubbery limbs into clothes.  I suddenly realised he was helping.  When I take his top off, up his arms go and out his head pops ‘Ta Daah!’.  He does not fall over backwards.  Not, that is, unless he finds the whole thing incredibly funny in which case he loses his balance and over he goes.  We don’t get changed on high surfaces :-).  When I go to change his nappy, or put his trousers on, he will lift his bottom.  I only discovered this when one day, so engrossed was he in playing with a packet of wipes, that he didn’t, and I saw how much harder than usual that made the job.  He engages, anticipates… he helps.

Most importantly for us when he wakes up – at whatever hour he deems appropriate in the morning – he does not shout to be got up.  Well, occasionally he does, but this is rare.  We can hear him, giggling away, chatting with his toys, playing with the mesh on the bed board (this saved our lives by the way, thank you)… but he is happy to play by himself so we can get up at a slightly more acceptable time, in a more leisurely fashion, without hitting action stations the moment his eyes open.  This is huge.

And for Emma… we can all sit and watch a movie on a Sunday afternoon and Alex will sit and play, and be played with, whilst we do it.  I genuinely never thought this would happen.

Tiny tiny things that just make life fun again, normal again, go an incredible way to making it a happy to be in house.

The Hat Game

Hat goes on, hat goes off again…

What’s Wrong With Him?

‘So, what’s wrong with him?’

I am wrong footed for a second.  ‘Er, nothing, he’s perfect?’ I think.  But I know what they mean, understand what they are after.  A simple label to explain why Alex is the way he is.  Why he isn’t walking, why he isn’t talking, why he sits in his pram rather than trots by my side, why he flaps his arms up and down quickly when something is exciting, indicating with every fibre of his being that he is happy, why he doesn’t always look at you properly.

Why he is so interested in shiny things, why he doesn’t always play with toys appropriately… why he wakes up in the night, sometimes for up to two hours and lies there, giggling to himself, before dropping back to sleep.

Why he is who he is.

Why he is Alex.

I don’t know.

It’s not as if we haven’t tried to find an answer.  The medical profession have tried, as hard as they can, to provide one for us.  In those early days, when you probably didn’t hear from us much, Alex was having blood tests, or MRI’s or awful, awful lumbar punctures that I wish… I wish we hadn’t done… to try and find a solution.  Nothing, always nothing.  No obvious cause could be found.  So one by one we have dropped off their lists, we are down for annual reviews with opthalmology, neurology, paediatrics… they don’t know what to do with us anymore, feel they can’t help anymore and have reduced Alex to ‘interesting anomaly’ along with more children than you’d expect.  We are left with genetic testing. New genetic testing that is, everything else has been tried.  There is a study called the DDD study – Deciphering Developmental Disorders – which is delving deeper into Alex’s (and many many other children’s DNA) to try and find a reason why he hasn’t developed as we’d anticipated, as we’d hoped.  That is where we are.

In all honesty, we don’t mind.  There was a point, at the start, where we were desperate to find out how this had happened, but now… he’s who he is.  He’s just Alex.  Developing at his own pace and in his own way.  And he is a miracle to behold.  Those tiny, tiny progresses he makes I marvel at and celebrate every single day.  They are appreciated because they were never anticipated.  And we have found SWAN, a place to call home, where we can talk to other parents who are in the same situation.  And that has been a lifeline.

The co-ordinator, Lauren Roberts, has written a very good piece about the trickiness of not having a label, you can read it here:

Why do you want to label your child?

But for us, although it… would be helpful to have to tick a box, rather than give a 3 paragraph essay on the salient points… would be useful to give people a quick answer, rather than a chat over coffee… would be good to know what was coming, for all of us, just for some clarity in our future,  we’ve moved past the point of needing a diagnosis, have got used to the unpredictability of our son, and all that he is, because of all that he might become.

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Mum, I’m just a unique individual!

On defining moments… and everything after…

There is a process of grieving that you have to go through when you realise that your child will not be… as expected… as anticipated… as dreamed of…  That their life will be dramatically different from yours in ways you had never conceived of.  That they have additional needs.  And they are ‘additional’, they are not ‘special’, I’m so glad that that language has changed.

I think every parent treads slightly different boards on that journey to… I struggle to use the word ‘acceptance’ here, as it’s so incredibly passive, it implies ‘oh, alright then, I give up’… I prefer ‘accommodated’ *. Accommodated says, ‘I have slotted this thing into my life, a little more on my terms’.

It is a journey nonetheless and one I wouldn’t wish to repeat.  It is no underestimation to say that your life falls apart, our life fell apart, and we had to put it back together again, very very slowly.  Without the support of so many of you, and the amazing health professionals along the way, sometimes I’m not sure we’d be here at all.

There are words out there to make you feel better.  There is the Holland/ Italy scenario (for those of you who haven’t read it, you’ll find it here: http://www.our-kids.org/archives/Holland.html) which I struggled to gain much comfort from to be honest.  I wanted Italy, I did not want Holland.  Holland was not what we had asked for.  And then, and this is without wishing to cause anyone any offense whatsoever because everyone feels differently about this next phrase, but this is our personal journey so I hope it’s ok to be frank, we’d get ‘Ah well, special children for special parents’.  This phrase still makes me grumpy – it implies so many things….

That we are special, you are not.

I am not.

That you could not do this.

You could.

That – and here is the sticking point I think – some divine intervention brought us Alex.  I wish I could believe this, as it would make life easier, but I do not.  It was just a genetic blip, one we may never know the cause of.

Life just happens.

And so we grieved.  For a child so longed for to have turned out so so differently.  For a future so utterly unknown.  With Emma, I can map her out all the way to 21… Alex… I’m not entirely sure of next week.  We grieved for a family so utterly different from the one we had talked about.  We were broken. You try not to let it define you, to let it take over your life but for a time there it most certainly did.  How could it not?  Our marriage was pushed to its very limits – we were to be carers, not parents, neither of us had signed up to all that this could entail, and for a moment there, we weren’t sure we were strong enough to do this together.

But we did. And we do.  Every day.

What is amazing about human beings is their ability to keep going.  You can only live on adrenalin and chocolate for so long.  We started realising that we were laughing again.  With every negative test result for Alex came yes no diagnosis, but at least all the really scary stuff was being eliminated.  Hospital appointments lessened.  Alex and I managed to get out and just be.  ‘Life’ was resuming some kind of normal, a different normal no doubt, but our normal, one we could live with and positively enjoy.

We’re intrinsically private creatures but having Alex… in order for us to thrive both individually and as a family, we’ve needed to be much more open with our lives than I had ever anticipated.  This includes not only friends and family but all the healthcare professionals we’ve ever come into contact with.  Team Alex is a huge one and many many more people have the intimate details of his birth – and his life – than is usually the case.  No one ever asks about Emma’s birth anymore, but with Alex and every new healthcare person we meet, it’s their first question and, I can tell you, I’m starting to forget the details…

I don’t always like to talk about Alex, there is more to me and our family than just him, but he is a big defining factor.  By putting his wonderful self out there, my cheeky, inquisitive, beautiful little boy… who loves nothing more than sitting on the floor ripping up the weekend supplement… I hope that people feel able to ask questions and see he’s just a little boy, and we’re just a regular family, with just a little more baggage than usual.

Alex and paper

* (as beautifully put by a wonderful blogger here: http://premmeditations.wordpress.com/2014/02/06/when-did-i-become-that-person/)

Filling up the house… and everywhere else…

Without wishing to compare my sweet-smelling son to a little boy who doesn’t wash… Like Pig-Pen collects dirt in Charlie Brown, Alex has a collection of his own: equipment.  And he too cannot shake it off.

As all parents find, children bring what can only be termed ‘stuff’, or what we like to call ‘tat’, into the house.  This ranges from scooters and bikes all the way through to the annoying plastic whistle that came out of a cracker.

That they will not throw away.

Ever.

Whatever it is, and however you term it, it’s here to stay.  In true Alex fashion his stuff is bigger, more durable and a lot more likely to take up the entire room.  It is also essential to making life liveable and accessible.

Most of it I love because it brings ease to activities that would be hard at best, not worth trying at worst.

My favourite has to be his highchair.  I don’t know if it was because it was first in the door or because it almost looks ‘normal’ or because I was just so grateful for something to make mealtimes simpler but anyway… ta daah.

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The handy velcro keeps him upright (only now he’s starting to work out how to undo it…) and he can eat up at the table with everyone else.  Which is so important.  Because then we are together.

Then, there’s his buggy, the Snappi.  There’s no doubt it’s a bulky piece of kit, and sometimes I just can’t face trying to squeak it down another not-quite-wide-enough aisle (and again I think, I should complain about this, but sometimes, you know, I only have so much fight per day), but it is great in so many ways.  It is upright, so it helps maintain posture and also keeps Alex in the conversation – he’s not down at my feet, at an angle, he is there, he is present and joining in.  Also, it has the snuggliest cosy toes so we can go walking, without worrying he is frozen.  Most times, we’d just like to get in there with him it looks so inviting.

Alex pram2

Last up, the portable booster seat with extra helpful straps to keep him upright and safe – seat 2 go.  It is, you guessed it, a little unwieldy but it has got us out and about as a family.  Not only do we sit round a table at home, but with this we are able to sit round a table in a restaurant, on holiday, someone else’s house.  We do not have to use his pushchair and for that, good God I am grateful because it just pushes normal back into our lives again.  Look, I will think, we are out, doing something just the four of us, how often did you worry that wouldn’t happen?

seat2go

The list does go on, enter his great big car seat, 5 point harness, swivel base for easy access in and out of the car… the walker and specialised high/ low seat at nursery for him to access activities, and all the equipment from Brainwave to aid his physio at home (here it all is in our room):

brainwave kit

I do have moments where I think, Really?  All of this is in my life? Shouldn’t it have been getting easier at this point?  But, you know, dwelling gets me nowhere productive.  And here I am, this is where we are.  *Channels Pollyanna*.

As life moves on, as Alex (ahem) grows up, he and we will need and benefit from different equipment which is, in a sense, where I came in.  The wonderful McLaren we have is too small and I would like to get him a bigger lightweight pushchair for those smaller journeys – where we don’t need/ cannot face dis-assembling the beast that is his luxury SN machine – moving in between house/ car/ nursery/ the shops.  This may seem like a ludicrous luxury but it both makes the journey something I want to attempt (as opposed to not doing it at all) and saves my back and that, with Alex weighing in at a healthy 16.5kg, is becoming ever more important.  The trike would be amazing, just to take our children out together, cycling together as they should.  Again, it’s the small things, but the sensory benefit our little boy will get from being out there, front and centre rather than buckled in his pram, and that we will all get from being out together (there’s that normal again) is priceless.  And we are moving ever closer to needing a secure, height-adjustable bed to both keep him safe, and protect our joints.

Bulky equipment yes, but needed, necessary and life-enhancing.  Which I think is all any of us ever want to give to our children.

 

A life/ life balance

Something we don’t talk about …that having children has both its ups and its down-sides.

I’m also not just-saying-this when I say the ups far outweigh the downs.  I realise these are clichés, but they are clichés for a reason… I love the fun, the laughter, the added enjoyment that only a child’s perspective can bring to the world (‘Mummy, I’ve been thinking…’) and I would not be without them.  The downsides though – not just the lack of sleep that my already parent-ed friends dangled in front of me as I was pregnant with Emma – but the sheer miracle of getting showered and dressed in the early days, to the never reading a paper to the end like I used to, to sometimes just not being able to hear myself think… should not be forgotten, put aside as ‘they don’t matter’, because they do matter and they make you who you are.  You still need time, just sometimes, to fit these things back into your life.

The ups and downs with Alex are, unsurprisingly, a little more polarised.  The ups are monumental, not only his hard-won achievements, but also the little things from him that mean so much – his ability to put his arms up to be picked up, his hysterical giggling as you once again try to imitate a lion, the fact that he can pick up and drink from his own cup – these are all small miracles.  With Alex, these ups also extend outwards, outside of our immediate circle.  With small exceptions the NHS has been a wonder.  Until, one after the other, his appointments moved from weekly to monthly to annual as one by one everyone looked at the floor and said, ‘We have no idea what is wrong with your son, we have done all the tests we can’, they worked their hardest to figure our little boy out.  On a day to day basis his support team (who I’m fairly sure, gathered together, could turn out their own football 11) work hard with limited resources and dwindling budgets to both progress Alex and alleviate the trickier parts of our life, the parts we hadn’t expected when we said we’d try for another baby, the parts you wouldn’t normally think would be tricky.  I give you: eating out as a family outside of the house… getting him into his car seat without breaking my back…

Lastly, the kindness in people that he elicits is something I can never quite get over.  This includes you all.  You have all done it.  When Alex smiles, people smile with him, it is infectious.  People help me with doors to move his overly-large pram around, they pick up his toys and help me with his coat when we are out… people rarely stare.  People wait for us to catch up, we are not left behind.  He slows our life down, but the kindness that envelops us because of this… it goes a long way to make up for it.

However, the downsides… events this weekend have highlighted these and it would be wrong of me not to voice them.  We could all drop dead any minute, that’s a fact, but we probably won’t.  Alex… well, in my more rational moments, I don’t think he will either, he’s a robust little boy, not prone to hospital stays and good God I am grateful, so grateful for this.  But when he gets ill, he gets ill, and he takes longer to kick it than he should.   A cold that takes Emma three days to get over?  It takes Alex two weeks.  This condition he has, that makes him who he is, this genetic anomaly with no name.  Who’s to say where it will take him?  Who knows what and how long this journey will be?  And these thoughts can sideswipe me sometimes.  Most times they stay neatly in the box marked ‘Too scary to worry about’, but just occasionally they creep out, catch me unawares and when they do… my little boy cannot move for being cuddled, for being told how much I love him.  For he is who he is, a tricky little bundle, but one I can never imagine not being a part of our life.

 

Alex pram

Right Mum, where are we off to today?

Everybody needs a little space

Those of you who know me will know how much I value the respite we have.

I cannot over-emphasise the importance of respite in our lives.

We love Alex.  We love him.  But he does place limitations, restrictions, extra baggage – call it what you will –  on our life that, as we were planning our perfect little family of four, it’s fair to say Gary and I had not anticipated.  At the age of 3 Alex should be up and running, toilet trained and when we’re out and about we should be down to a Maclaren at best.  The reality – bulky takes-up-most-of-your-boot special needs buggy; changing bag showing no sign of redundancy any time soon; hills, cobbles and beaches still very much on the list of things to be avoided.  On a day to day basis, this is ok, because you take life as it runs and you are grateful for what you have but… Were our life to always look like that, well, I’ll be honest, I’d be rocking in a corner.

Enter respite.

Every other weekend Alex goes off on Sunday morning to be with his just amazing cannot-find-enough-superlatives-to-describe-her carer and her amazing family who have wholeheartedly taken him into their lives.  It’s a little like sending him to the grandparents he can’t go to though I know they’d love to have him – because he is heavy, because his needs are many – and getting that wonderful undivided attention only people who aren’t his parents can give him.

And us?  Well, we slow down.  Life becomes leisurely, meals become slower.  I get to feed just me, not me and Alex.  I don’t go to bed worried he’ll wake up in the middle of the night.  And we get to spend concentrated time with Emma.  Just the small stuff, hanging out and reading together, watching tv, going swimming or to the cinema but, for that brief window, just focussed on her, no interruptions.  Because sometimes she can get lost in the maelstrom that is our son.

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Emma and I at Lyme Regis last summer.  A beautiful day, just the three of us.

And when Alex bowls back in on Monday afternoons we have missed him, we cannot kiss him enough and we are ready to take on the world – with all that the world of Alex entails – with gusto.  And with love.

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This was at the Swannery in Abbotsbury – perfect disabled access, so all four of us had fun.

 

Mencap are currently running a campaign to highlight the importance of respite, which you can read about here:

http://www.mencap.org.uk/campaigns/take-action/breaking-point

A little independence

I sometimes feel as though people are surprised Alex attends nursery.  I don’t know if this is surprise that he could manage it or surprise that the nursery could accommodate him, but, he does and they do.

Back in the bad old days – when Alex’s needs were becoming increasingly apparent and the wheels were slipping off the wagon of life that Gary and I had so carefully planned – our wonderful Health Visitor came by with a suggestion.  If we wanted it, there was a pot of money we could access to get Alex to nursery, 6 hours a week.  Here was the first of many lifelines.  I think, had it not been offered, we would never have tried it.  We would have felt too guilty to go out there and do this ourselves, asking someone else to look after our litle boy, so dependent on people for his needs – who could do it as well as us? who would want to?  For we all think our children beautiful, wonderful, funny, but we’re aware that not everyone else sees it the same way.  So to ask someone to take on Alex with all his additional needs?

The system, in it’s wisdom, has recognised the importance of getting children with additional needs – children like Alex – out into the world.  Just because they have additional needs doesn’t mean they should stay home, rocking in a corner.  They have much to give – love, laughter, a totally different angle on every single everyday activity – and much that can be gained – being around new people, playing with new toys, meeting and making new friends.

We were wary and worried, but we needn’t have been.  It took us a while to find the right one.  The nursery that had been so good for Emma just didn’t know how to approach the world of SEN and the second one we looked at was inaccessible, dark, unappealing.  But, as with all the best stories, the third one was just right.  It was all on one level, perfect for wheeling him around; it was bright and airy and the children looked happy, engaged; they had looked after children with additional needs before, so had experience of working with them and knew how to access support.  This has been critical for us in helping us navigate the system, because it’s a complicated one.

Most importantly of all, Alex’s key worker is a woman who loves him, nurtures him and is as proud of his achievements as we are.  We’ve been so lucky to have her in our corner.

He has blossomed there.  The nursery have worked in tandem with his therapists to make sure everyone is working to the same programme.  He has access to messy play, to outside space, to other adults and other children.  He has made friends.  When I tentatively asked if we should be sending Christmas cards from him last year, I was given a list.  When the Christmas play was announced, there he was as a star with all the other nursery children.

He is actively included.

Alex goes to school this year which will be a whole new world – of holidays, shorter hours, new routines – but for now I am purely grateful for the head start nursery has given him.  And us.

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Look at me standing up!

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Loving a bit of messy play.  Mummy hates it, so I’m really glad I can do it here!