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!

Glacial steps

With Alex, unlike with Emma, his developmental curve is… unique.

With Emma we were always looking to the book to see the next milestone – crawling, walking, talking, using a spoon… you all know the ones, and we looked forward to each in turn.

Alex however plots his own path.  For a long time there, we weren’t sure anything would come.  He would lie in his own world staring at light and dark and not being amused by much else.  But slowly, glacially, our little boy has blossomed.  From enjoying the sound and feel of space blankets, to finding flashing toys funny to… oh… he’s reached out with one hand, with two, look, look he’s passing between his hands…!  We have cried with relief and delight as he moves his way forwards and finds he wants to achieve more.

The New Year always makes you take stock I think.  As I look at him and see where he is now – solidly sitting up, playing with his toys, making little sounds (a-da, a-da being a particular favourite) and now – as his core strength improves – propping and reaching across the midline which, in turn is allowing him to swivel round on his bottom… he is farther along then we ever thought he would be.  I have long stopped comparing him to other 3 year olds I see.  Alex is… who Alex is.

This is not to say we don’t worry for the future.  We do.  And these thoughts can frighten me.  But we have been helped by so many people to adapt to Alex and what his life throws at us thus far, and I have to assume and hope this will continue.   So in the day to day, the here and now, we push him as far as he will let us so he can access the world, and all it offers, as much as he is able to.

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I may be achieving lots Mummy but it still got a bit much for me over Christmas…

 

Today, I am thankful…

Christmas was interesting.

I had planned to sit here, glass of port in hand, telling you all about our festive time but instead, as is the way with our children, Alex decided to liven it up with a quick dash to A&E on Christmas Eve.  He’d come down with tonsitilis on the Friday before and every morning he seemed to get better and by the end of the day he was not… he was lethargic and getting fluids into him wasn’t always something his sore throat wanted to do.  We got worried.  The doctor we hauled out on Monday said that if after another 24 hours he’d got no better we should head for RUH.

For those of you who live further away this is our local hospital.  It’s a good one I know, but the very thought of it fills me with dread.  Every parent who has spent any amount of time in hospital with their child will understand this.  It’s where you end up if things have got bad.  And when he was little, things with Alex got bad a lot.  We spent a lot of time there and I got on first name terms with the nurses: ‘Back again?’.

So we reach A&E with Alex’s temperature high and his oxygen levels low… after two hours he’s the perkiest I’ve ever seem him and I feel like a fraud.  The little people know, don’t they?  At midnight, with promises of a return if he doesn’t improve, Gary came to get us and we raced Santa home.

And yet.  I am thankful.  Thankful that the paramedics, ambulance drivers, nurses, paediatricians, consultants (‘Your son does present as a very unusual case’) all asked sensible questions, all took me seriously, all checked Alex’s vital signs at every step of our journey through that hospital.  Thankful for the wonderful nurse who dug me out a sandwich at ten o’clock at night as every food outlet was closed.  Never has a ham sandwich tasted so good.  Thankful that they were pragmatic enough not to panic over an undiagnosed child, who doesn’t present as most children would, and trusted my judgement enough to let us home.  Thankful that we had Christmas together and that it was such a lovely day.  Thankful for Gary’s parents who came up early at a moment’s notice, looked after Emma and then looked after us so that we all had fun.  Thankful that Alex noticed and played with his presents but really thought the wrapping paper and the gold shiny bag were the Best Things Ever.

Thankful for you all for liking and sharing and promoting Alex’s page.  It means an incredible amount to know that you are all there xx

Alex xmas

We went to Brainwave this week

Alex and I went to Brainwave in Bridgwater this week for his re-assessment.  We went, for the first time, in June and now, 6 months on, we were back to see how he had progressed.  They do offer you a ‘baseline’ where they ask you questions about what your child can and cannot do and, essentially, score your child to see where they sit on the developmental curve.  I think Gary and I both feel that Alex is creating his very own curve and it can be disheartening to hear where he ‘fits’ so we never ask for these results.

As our physio was asking me questions Alex was doing his usual: sit up… lie down… sit up…. lie down and after about the fourth time, Mervin (our physio) pointed and said ‘Ooh, that’s new…!’ so our clever little boy was presented with this:

Brainwave

Sitting up independently is a huge milestone as it can potentially lead to standing and walking.  They’ve sent us home with a lot of exercises and equipment to improve his upper body strength to help him pull himself up and keep working on his weight bearing and stepping.  Our bedroom now looks like a baby gym…

brainwave kit

So now we have 6 more months to work on these exercises to hopefully bring home a new certificate in June.  We’ll keep updating you…

Starting at the start

Starting a post is always the hardest.  Where exactly is the beginning for Alex?

A potted history maybe?  But, in all honesty, this seems so long ago and Gary and I, and Emma and Alex, feel like different people to how we were then.

This is how we are now.  We have been a year now in our new house which has made the world of difference to our lives.  It’s like we breathed out, just being, and living, in a space that we owned.  The extension is – honest! – nearly finished.  Gary says January, I’d say a more conservative February, but then we are so looking forward to having people come and stay.  Having Alex has without doubt highlighted the need for a comfortable, accessible-for-all, home space.  If he’s happy, we’re happy.  And that’s important for all of our well-being.

Alex himself is a wonderful, cheeky little boy.  His latest trick is pulling himself up from lying to sitting.  He loves demonstrating this to us again and again.  He’ll put one hand down on the ground and the other will grab his trouser leg to lever himself up.  We are so proud of him.

We are fundraising for Alex because, as he gets older, specialised equipment to make his life more fun, the world more accessible and also safer… costs money.  It’s a dirty word I know, but I’ve got more used to talking about it as, in the world of disability, provision and budgets come up a lot.  The NHS have been amazing, but their resources are stretched, sometimes not there at all, and we would like, where we can, to push Alex to achieve all that he has the potential to be.

We’d like to buy him a trike so he can go out with Emma, not be stuck in his pram, because the freedom of movement it will give him – not to mention the feel of the wind in his hair – will delight him.  We want to be able to continue to visit Brainwave, a centre in Somerset, where they spend a whole day working with you and your child in order to see how you can help them reach their next developmental stage.  And, as he gets older, Alex will need a bigger, more secure bed so that he is safe to explore it with the movement he has, and we are safe in the knowledge that no harm will come to him, and we’ll be able to sleep.

We’d like to say we can afford all these things ourselves but, in truth, we can’t.  Disabilities, additional needs, call them what you will, are not unlike the word ‘wedding’ in the increased cost they add to every day items.  Alex needs these items now and so we are raising money for Alex through Tree of Hope, his Justgiving page is here:

http://www.justgiving.com/Alex-Piper

People have asked us how they can help with Alex, because people are lovely.  Donating to this pot is one way you can do this.  But please don’t feel at all obliged, financial times are tough we all know.  We’re just happy to have you with us for the journey.

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