Emma

Funny, extolling the virtues of Alex is ok, but talking about Emma feels different. She can talk for herself after all. I’m not boasting here, not saying she’s best daughter ever – we’re well aware of the foibles – but simply: here’s why we love her.

Emma. We – I – never talk about Emma.

She rocks our world.

When our lives were unravelling as we saw that Alex was not the baby we’d expected she kept us going.

She was my reason to get up in the morning when all I wanted to do was ignore this other part of my life, stay in denial, not go to yet another meeting with yet another medical professional who would say, yet again, ‘We don’t know. We can’t say. Now off you go…’

She made us stay connected to the real world. Just by existing. We had to get her to school, we had to get her to clubs, she needed feeding. If it had just been the two of us with Alex… I don’t know…

It was harder no doubt having Emma too because we had to keep her in mind… But because she needed normality, as much as we could give it, we stayed in it too. It gave us another focus.

No question, she must have changed because of Alex. All children change when they go from being ‘only’ to having siblings and so it’s hard to tell where the blurry line from ‘sibling’ to ‘sibling with disability’ lies. But whilst the focus is naturally always on the new baby, it would normally change as they grow up and, though Alex has grown up, that focus hasn’t shifted so much.

Emma was asked recently if she thought Alex had had a negative impact on her life, if she’d been prevented from doing anything… It was all I could do not to cry when she emphatically shook her head: no.

Our primary concern when we do anything is: how will this fit with Alex? As he gets bigger and doesn’t yet walk, as he gets bigger and doesn’t understand safety… it becomes more and more difficult to go away, to experience newness. So I am phenomenally grateful to our family and friends who work with us to make that happen for Emma. We can’t all of us get away, but at least – with their help – she can.

And Emma… Emma has dealt with this in very typical Emma style. She had a wobble, as we all did, but her school were amazing at helping us to help her… and she has grown into a thoughtful, funny, interesting little girl. She loves facts. Loves to *learn*. Loves space. Minecraft (*sigh*). Reading is a passion. She goes out to play with her friends. Her confidence is growing.

There is this added, disabled, side to her life but we like to think there are positives. She loves to go on the SWAN days out (she calls them ‘disabled days’), she’s recently started going to Young Carers where she can hang out with other children in similar situations, children who just ‘get it’ …when she came back from her first visit it was clear she’d enjoyed the evening (as well as the free pizza. ‘I don’t need tea before I go next time Mummy, there’s So Much Food!’).

We worried that picking Alex up from his new school would be difficult for her, we explained the other children had a variety of different disabilities – some like Alex, some not so much – ‘that’s ok Daddy, I know and I won’t stare’.

All parents are – rightly – proud of their children but we are so proud of Emma and the way she has taken this situation on and just rolls with it. I panic, occasionally, that one day she will resent her little brother but right now, the love they have for each other is a wonderful thing to witness.

Emma brings laughter and normal with a capital ‘N’ into our house. And we are grateful for it.

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Taking that next step

I meant to write this post some time ago.

In the planned ‘discounting emotion and general curveballs thrown at me by life’ world I’d hoped I’d write this in between the two life events of Finishing Nursery and Starting School.
But I didn’t.

Alex starting school, it turned out, was going to take me some time to process. In the mix were leaving somewhere safe and secure, starting somewhere new, different hours to contend with, an altered school run, less time with Emma (those afternoons after school before nursery ended – gone), and how on earth would I juggle working with school hours and (whisper it, deny them) school holidays. This was huge and I hadn’t clocked that at all.

However.

What this was supposed to be was a thankyou letter for nursery.

Thankyou.

For taking Alex in, unblinking, and working the challenge that he is and not seeing the problem that he could have been.

For including him: for wheeling him across the fields to visit the horses, pick the blackberries, join in with sports day (not at the same time, obviously).
For helping him join in.

To his friends for making him feel part of the club and accepting him for who he is.

For helping him develop – he joined nursery this timid little one year old, highly tactile defensive, super-sensitive to noise. He leaves a boisterous, inquisitive, confident little boy. I’m so proud of him and so grateful to you all for this.
And to all the amazing staff. How much you all supported him.

But especially, his key worker.

We couldn’t have wished for better. She loved – loves – him. You can tell. And so proud of his achievements. But takes no nonsense. And has stood with him every step of the way – getting him equipment, asking questions, pushed him on.
Been there for me.
Let me cry in the staff room when it all got too much. Helped me find solutions when I couldn’t see any myself. Made me realise I didn’t have to do this on my own. We – I – couldn’t have asked for more and we so hope to keep her in our life.

Thank you all. For loving him and preparing him for this next step. Because even if I wasn’t ready, Alex was.

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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…
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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.

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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.

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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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