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.

image (2)

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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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The Path to School (Part 2)

If this were a well-known hair product commercial, this would be the point at which Jennifer Aniston would give her trademark grin to the camera and tell you the science bit was coming next. You see I glibly say ‘Ooh, Alex starts school in September’ but there is a lot you don’t see – the duck’s legs kicking frantically under the water, the sheer organisation needed to get him started on time and with all the resources and support he needs.

We sorted Alex’s Statement of Educational Needs pretty early on. In the simplest of terms – this lays out what his needs will be in school and how they must be met.  Having heard some shocking tales of how they could take months to put in place we figured earlier was better. Alex, it turns out, is pretty black and white – no grey areas for our boy – and the Statement sailed through. I stopped for a moment here, Really? He’s that disabled, no one is going to argue? No, no we’re not. Here it is, signed and on time.

The annual review of his statement coincided with the first of many school entry plan meetings.

When I was pregnant with Emma, and I made Gary come to the NCT meetings, there was one session where the woman leading the group explained how it would be if one of the mothers-to-be were to have a caesarean. There was an agenda quite clearly playing out as she explained that there would be no whale music for us, but up to 15 people surrounding us as they hauled the baby out. (Emma was born C-section in the end, we had Radio 4 on I think).  Her aim, as you’ve guessed, was to show how intimidating and impersonal it could be.

Anyway… at this school entry plan meeting there were 12 people including me. The Head and SENCO (Special Educational Needs Co-ordinator) attended from the mainstream inclusion school, the Deputy Head and Alex’s potential class teacher came from what will be his main school. In addition we had: Visual Impairment Teacher, Educational Psychologist, Occupational Therapist, Alex’s Key Worker and SENCO from his nursery plus the woman who helps with his ICT input and the lovely, lovely man who comes and makes sure that hoists/ chairs/ ramps are in place and the appropriate manual handling training has been arranged. He has got a proper job title, I just can’t find it. This was with apologies from 6 others: Health Visitor, Paediatrician, Social Services Occupational Therapist, Social Worker, Physiotherapist and Speech and Language Therapist.

I promise I won’t list these people every time, but it gives you an idea of what my contacts list looks like and what we have to deal with, from many many different sources, when it comes to Alex and all that he needs. (As a by the by, the Labour Party are proposing the introduction of a point of contact co-ordinator for all these services, so that we – as a family – would only have to deal with one person in the whole system and then they, on our behalf, would then deal with everyone else. They get my vote for that alone).

We sit and politely don’t eat the biscuits. The Deputy Head kicks the meeting off – she is great and I’m so glad she’s in our corner. ‘So, we could start with Alex’s strengths. What does he like? What is he good at? Mum…?’

Pause. ‘Could you call me Helen?’

It breaks me, being called Mum. I know I’ve voiced this before. Of course I’m his mother, of course I am, but I am me in my own right too, I am not his shadow. And by not using my first name, you remove my identity.   It says: I can’t be bothered to remember your name, it says, you are not in our club. I remember everyone’s name that is related to Alex because it’s important for me to do that – who are you? What do you add? It seems only right and fair for them to accord me the same courtesy.

*climbs off soapbox*

Bless them, they all used my first name after that, and you could tell they found it weird but it made me feel so much better, so much more included in this conversation about my son.

So we sat, and discussed Alex for over an hour and at the other end we came out with a plan. There is a lot to do. Things that sound tiny, but require real thought and attention. For example, Alex will need transporting from one school to the other, how will this happen? You can’t wheel him across in his chair, it’s not meant for the outside world, he’ll need a buggy, he’ll need a chair in each school. What about a height adjustable table so he can also stand up whilst playing?

Manual handling training needs to be given to as many staff as is practicable so Alex is never stuck in one place for too long due to lack of staff with the right training.   Visits need to be made to his nursery by both schools to meet and observe Alex in his surroundings. Funding needs to be applied for for chairs, hoists at the swimming pool, ICT equipment specific to Alex’s needs. And this is just before the next meeting in May. These people, they are game, they want to make this happen and at the heart of every conversation is, is this right for Alex?

I worry that this can be seen as a vast over use of resources for one boy but thank God that society has seen fit to allocate money for these children with additional needs. He is not taking from a pot but accessing another, specific to him, and all children who need extra help. We – currently – do not differentiate between those who will be able to add to the system and those that will need more help than most, may never, in fact, add in any financial sense to any system because – and I feel strongly about this, as you’d imagine – there is more than one way to contribute to, and make a better place in, our world. Alex does this every day by being the fourth limb in our family – happy and inquisitive and having the most infectious laugh ever. And he sleeps. When he’s supposed to. This is very important too …

Alex with FT

Honestly Mum I don’t know why you’re worrying, I’m getting all the education I need right here…

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