A different viewpoint

Watch that family on the beach. The father and daughter are out swimming, the mother and their younger son are sat at the water’s edge. Their son is splashing with his legs and flapping his arms and sometimes, if his mother isn’t fast enough, eating the sand. Odd for a 4 year old, but he is happy… Everyone is happy.

Regard that family in the park. The mother and daughter have marched on ahead, exploring the undergrowth, discussing the sculptures that have been placed there. This is the first time her mother has managed to engage her in art in this way and she is delighted. Further back the father pushes their younger son in his buggy, together they are enjoying the effect of the light coming through the trees. Strange that the boy isn’t up and exploring too but he is happy… they are all happy.

See now as they all go off into the forest, the daughter darting off to discover new twigs and stones that she proudly brings back to display to the rest of her family. Surprising that their son doesn’t get out and run with her. But he is happy… they are all happy.

Laugh as, when faced with a hill, they all three pull the son in his buggy up the hill – the strength of them all needed – they sing as they pull and the boy laughs that infectious laugh and they recognise the ridiculousness of their situation and all the time the adults fight the thought at the back of their minds – will we still be able to do this next year? Will he be too big, will this be impossible?

But right now? They are each and every one of them happy. Happy in the moment of being together, of enjoying the new… Celebrating that they have once again achieved that simple yet important pleasure: a holiday.

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Mummy, no need for lunch, this sand is yummy.

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How accessible are you?

I’d initially thought I’d write this about the humble Blue Badge and its accompanying cardboard clock, and what a difference these two tiny things had made to life. They have been incredibly enabling.

There’s a slight guilt when you’re issued with one of these, at least there was for me. Not that Alex isn’t entitled to it, because he is, but because I just felt that as he was being pushed around anyway, why did we need the space?

We need the space because it’s what comes with the space. It’s that huge cross hatching that goes around your car. That means I can get the door all the way open, not just try to wriggle Alex (a long flippety floppety 4 year old boy) and me out from between two badly parked cars. It means I can open the boot and hoof out his buggy without being run over. And sometimes, those spaces that we can access right next to the park, the school, the swimming pool… just mean that we will actually do the activity. We don’t worry about how far away we have to park, how many awkward roads we’ll have to cross. We’re just there. And that makes a huge difference. And I think sometimes people don’t appreciate that when they park in a disabled spot that they shouldn’t.

A couple of months ago I came home to find someone parked in the disabled spot we usually use. Fair enough, it’s not ours, just handy for our house and so I parked behind, on the single yellow which, thankfully, we’re entitled to do. As I did so, a young woman bounced out of the car in front and looked back and caught my eye and for once I was brave…
‘I’m sorry,’ I said (sounding all of my mother years), ‘but do you have a disabled badge?’
‘No, I’m just in a hurry. Did you want me to move?’
At that moment I did that thing we all do, thinking no, no, it’s fine, I don’t want to cause a fuss. But then I remember we’re only allowed 3 hours on the single yellows, I’d have to come out later to move my car, which wouldn’t be easy if no-one else was home to mind Alex.
‘Well, yes, yes I would, as we do have a badge’.
And I know how I sounded. But there’s a reason for that space. It facilitates our life.

But accessibility is so much more than this. It’s thinking about access – the ability to Just Get In Somewhere – that we have to think about every single day. Now Alex is four, this should of course be getting easier, we should have lost the buggy and the nappies. But we haven’t, and who knows if we ever will. So these things remain important.

People who are disabled, who have disabled people in their family group, their group of friends, they all like to go out, but they have to be enabled to do this. On every level. It does involve a little more thinking, not just ticking boxes, and I suspect that can be time consuming and costly. But think of the difference it makes to people’s lives and – critically for commerce – their ability to spend money (the purple pound, apparently).

We’d love to go out for dinner…. oh, no, there are too many steps.
How about the museum for the day? No, the disabled toilet may say disabled, may have ticked the ‘inclusive’ box but actually, it only covers those in a wheelchair with limited mobility. There is a toilet. With a handrail. Those with no mobility, those who need a changing bed and hoist? No, they’re not catered for.
Where am I supposed to change Alex? On the floor? In the boot of my car?

And – and this is my personal favourite at the moment – can I drop off my dry cleaning?
No…
dry cleaners

Because I am a middle aged working mother I was ridiculously excited when a new dry cleaners opened because I cannot get Alex into the only other one in town. It’s down a narrow street with an awkward step by a very slim pavement. But this new one, being new and shiny… ticked its ‘disabled’ box..? by installing a handrail. By the not inconsiderable step.

When we needed to open a bank account for Alex… I chose the one I could get his buggy into. The one with easy access doors. Not a ramp you had to phone ahead for.

To truly include the disabled, to make them a real part of life… More thinking outside the box is needed. At every single stage. And they will reward you with custom, loyalty…and good reviews.

Alex in park

Mummy, Daddy says ‘are inclusion and accessibility really the same thing (and have you been watching 2012 again)?’

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Talking about inclusion

Life is all about inclusion. Being made to feel part of life, of society, your community.

That you matter.

This is especially important to children with disabilities… special needs… additional needs… call it what you will, because they are very easy to leave behind. On the whole they don’t make a fuss, or if they do, it’s easy to dismiss them with a ‘they won’t enjoy it’. But we have to try. Because what are we otherwise without trying to give everyone – regardless of ability – the chance to achieve, enjoy, experience.

Alex had his first taster at mainstream school this week. There was a little wrinkle with getting his chair to the school in time (the one that goes from high to low so he can access activities at different levels and no one has to break their back getting him to it) but so many people pulled together, and we got one. He’s had a lovely time. He’s been in a totally different setting and not been bothered by it. He’s had different toys to play with and loved exploring them. I got to meet some new mums and they were beautifully polite and either ignored the elephant in the room or let me introduce the topic. His teachers came and said hello. I was so nervous – would we fit? – but people were welcoming.

I feel incredibly strongly that he has this year with his peers. Otherwise, those ‘different’ children, those ‘other’ children get tucked away in their own ‘special’ school, they are not incorporated, they are not understood, and then where are we? I’m so pleased everyone is making this work for us. Alex’s needs can be a handful, but with planning they are surmountable and the rewards, the benefits, are there for all to see.

Last weekend, we met up with some old friends. 4 and a half hours away friends. Lincolnshire – like Somerset – does not believe in motorways. It was the loveliest weekend. The host family’s children are around the same age – 8 and 6 – and they took Alex under their wing. Despite both hair pulling and shoulder biting (what he’s actually biting is the material – he loves material – but, obviously, flesh is collateral damage along the way) they wanted hugs, they gave him toys… I love that he is included. They wanted to help him join in.

There was a hot tub in the garden which – as you can imagine! – caused great excitement among the kids. And my lovely friend didn’t wait for Gary to get ready, just scooped Alex up and took him in as well. I nearly cried. Because this man, he wasn’t phased by my son, he just saw him as a boy, who would enjoy a splash in the water. And he included him.

And the more this just happens, the more we all think not, ooh, this could be tricky, but OK, how can we make this work, the more everyone – all of us – enjoys life. As much as we possibly can.

Alex splash 1
Check out my splashing! What do you mean, you’re all getting out…?

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Hello trike

This is less a blog post, more an ‘I’ve got news!!’ I know a few of you don’t do Facebook so…. The trike arrive yesterday!! We took it for it’s inaugural ride round the park and managed a quick video. It’s quick because we are still trying to get to grips with the steering!

We are so so grateful to everyone who helped make this possible, especially those very lovely Wakey Cup people. You guys are truly amazing.

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Guest post from Alex

Hello Daddy! I’ve asked Mummy to do this for me as I think she might be quicker than me.  (She also said that although the fact that I can now smack the keyboard really hard with both hands is really good – a ‘developmental milestone’ she said – you might not actually be able to read what I’ve written otherwise, which would be a shame as I have had some Good Thoughts …)

You are the bestest Dad ever.

You are.

I know that when I catch your eye and give you my best Alex smile, and you smile back… you love me unconditionally.

I love the rough and tumble play fights we have.  I love that you don’t think I will break, even when Mummy says ‘Careful…!’  I know I’m safe with you.  I know I won’t get hurt.

I love that you don’t mind that I cover your shoulder in not-quite-finished toast after breakfast – you just want a cuddle.

I love that you take me out of the pram when we are out, even though I am heavy and even though sometimes it’s hard to predict which way I may want to bend my body to look at something.  You help me engage.  You put me on swings, hold me in the sandpit, swing me over your head.  Last week as Emma tried tree climbing, you balanced me on a branch too.  I wobbled, but I giggled.

Thank you for still physically pushing me and my fantabulous buggy round places that Mummy has started finding hard.  You push me up and down hills so I am included.  We saw the sea together Daddy because you were determined to push me back up that steep and windy path. That steep and winding path the lovely lady on the gate had advised against. Although I think she knew you’d try! I love being out with everyone and you make that happen.

You are funny.  You make me laugh such a lot.  Sometimes you’re so funny that I laugh so hard I forget myself and fall over backwards.  Then everyone else laughs too :-) I like it when we all join in.

You push me to try.  The reason I held my bottle – hold my cup?  You.  Night after night after never-ending night you patiently encouraged me to hold it before bedtime.  And one night – ta-daah! – I did.   You never gave up on me.  I love the freedom to choose now, when to pick it up, that I can indicate I am thirsty and actually do something about it.  That’s you Dad.  And my stepping?  That’s you too.  You were determined that I could do it, even when Mummy was a little unsure.

There is something in you that needs to push me on, try new things, won’t let me just sit there.  Wants to help me get out there and experience all that you do.  I know that Mummy sees it too, and it makes her cry a bit, but she says it’s in a good way.  And that is why you’re the best Dad ever (Emma says so too, and we both of us can’t be wrong!)

I love you Daddy.

Happy Father’s Day.

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PS Daddy, Mummy wanted me to mention how great you are at putting the bins out too, so I’m adding it here *just to keep her happy*. Women, eh?

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Hearts full of thank you…

On the last really hot day of this month, whilst Alex and his respite family went off to the beach, Emma decided she’d like to go to the cinema.  To watch Frozen.  Again.

Luckily for her, I didn’t mind.  We’ve slowly – like every other family I know – become a bit overrun by all things Frozen, and Emma has been carefully writing out the various song lyrics for friends for weeks.  For those of you who haven’t been to see it yet… go see it.  It’s the only film Emma and I have discussed in detail all the way home.  At it’s core – I think – is the love and friendship two very different sisters have for each other and how this ultimately saves the day (Elsa – unlike her sister Ana –  just happens to be able to flare out snow and ice from her hands in a fashion very similar to Spiderman and his webs) but there is so much more to it than that.  For one, there’s Disney’s first gay family, but my favourite has to be the beautiful subversion of the traditional fairytale ‘love at first sight’ idea (‘You’ve agreed to marry him, and you’ve only just met him…?’ echoes throughout the film).

Where this film really resonated with me the second time round in a way which had somehow passed me by the first time round, is in the isolation of Elsa and the affect this has both on her, and the household.  For what you can see are the best intended reasons she – and her somewhat unusual ability to create wintery conditions – are hidden away in her bedroom, out of sight, away from everyone.  She never sees her sister. Elsa’s not seen or heard from again by the outside world till her parents die and she comes of age for her own coronation.  She is scared all the time of making the wrong move, doing the wrong thing and hurting someone with these powers she has.

There’s no doubt we both do and did this with ourselves and Alex.  Sometimes it’s easier, so much less aggravation, so many less questions to answer if we maintain what we in the land of disability like to call our ‘bubble'; where our life seems normal even though we accept that to most people it looks anything but.  So the shutters come down, the doors are closed, invitations are declined and life goes on being lived, but very much within our own 4 walls and on our terms.  It’s easy… but it’s not much fun.  You resent life if it’s lived this way because you can see just how much of life you are not living, you are just exist-ing… you see how much is passing you by that you just – foolishly, oh so light-heartedly – assumed would be yours for the taking.

So we went out.  We took baby steps.  Days away from home just by ourselves.  Look, we’ve done it, we’ve had a walk, had a picnic, had an icecream.  Isn’t this what normal people do?  (Again, whatever normal is…).  Days out with close friends.  Weekends away with friends and their children which have been glorious times for us and Emma, just to be out there.  And we found… it was ok.  And just as Elsa was so much happier when her town accepted her for who she was and she could use those unusual powers for fun (How great that Olaf never has to find out what summer means for a snowman?)… How much happier are we, with our unusually put together family when we – and Alex – are out in the full glare of everyone.

Living.

Our friends, they are accepting, they ask sensible questions, they help.  Strangers… well, it would be great if those few stared a little less, but in the main they check Alex, they look at us and they grin.  It’s hard not to as all those of you who have met him can attest to – he’s a happy little boy and that’s infectious, disability or no.  And that flapping of arms, those stamping feet, you know he’s happy.  No grey areas for our little boy.

Last Saturday, we put him firmly front and centre at a local fundraiser.  Here he is, here’s our boy, thank you for helping him.  People’s generosity to The Wakey Cup was astounding.  So many people came and said hello, and so many people supported the day and the cause – in so many ways.  There is enough to buy him a trike, which we are so excited by.  We think he’ll love it.  The different movements it will allow him, the different sensations he will feel being more exposed to the air.  There is also, hopefully, amazingly, enough to get a 3 wheeler all-terrain buggy so that when Emma goes hunting for shells on the beach near her grandparents, we can all go and help.  This will all add to Alex’s exploration and enjoyment of life, thus enabling us all.

We cannot thank all of you who supported this day enough.  And to the Wakey Cup organisers a special thank you, for the time and effort you put in to making it such a success.  You’re truly amazing.

Thank you.  From all of us.

Alex & Sammy

This is me and my cousin Sammy on the bouncy castle.  We loved it.  Thank you all so so much, my Mummy says that this trike will make me quicker than Emma!

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Guest blog from Emma

I was talking to Emma about a piece I was writing for Undiagnosed Day.

‘Does it mention me? You know, you always tell me how well I’m doing?’

I laughed, and told her she was coping well with the whole ‘Alex thing’ but that this piece was more about how not having a diagnosis could be both a good and a bad thing, so it didn’t really talk about any of us in great detail.

‘Well, could I do a bit for it?’

‘Yes, but I might just put it up separately, if that’s ok?’

So this is Emma’s guest blog:

‘My bit’ by Emma

Being the sister of an diagnosed(*) child can be a bit weird because when people stop and say to mum ‘Why isn’t he walking?’ it makes me feel uncomfortable because you’re just torn between saying ‘If he could walk, he would’, or feeling quite embarrassed because he can’t do the stuff you can do.

But a good thing is that you can play with them for longer, generally mess about with them for longer.

It’s true that diagnosed siblings will take up more of your parents attention space, but you have to remember that when your parents do spend time with you they’ll be doing stuff with you that they could never do with your sibling.

When your the sibling of a diagnosed child it can be stressful at times, but overall it’s brilliant.

I cried when I read this (and not just because I was desperate to correct her punctuation).  It’s interesting what she notices in our day to day life with Alex, what sits in her head.  But I’m glad she’s able to articulate how she feels so clearly, to write it all down.

Alex and Emma

Pg 1 and 2

Pg 3

*she means undiagnosed – here, and later on – but you knew that.

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