Having a right to play?

Everyone needs systems and processes.

If only to have some words for your actions to push against.

Just to see what might happen, what could change.

Which brings me neatly to… holiday playschemes… and the intractability of county and district council borders.

I never ever thought I’d write a sentence like that. Bear with me…

When Alex was at his lovely nursery which provided cover all year round from 8-6pm it was remarkably easy for us to be working parents. When he went to school it, of course, changed markedly. As it did for all other parents who made the move that year. As it did for us when Alex’s older sister made the move as well.

But here’s the difference. When we needed cover for our daughter, we had a few options. We had a brilliant childminder round the corner from our house who would take her when we needed and bring her home three nights a week to look after her, give her a safe environment and keep her fed. During the holidays we stitched cover together through a combination of both sets of amazing grandparents and some holiday clubs. She had and has playdates with friends. She had a great choice of activities available to her: swimming, drama, t-shirt painting, football club (only the once mind, never again…).

Whereas with Alex…

No childminder can have him because they aren’t set up for wheelchair access and anyway the care ratio he would need makes him impossible to accommodate.

His grandparents couldn’t have him – and I know they would have if they could – because he comes with a ridiculous amount of equipment and… well, they are older. Less able. And Alex is more than a handful.

Holiday clubs couldn’t take him because (in no particular order and sometimes we could tick more than one of these options): someone would need to stay with him, there weren’t any toileting facilities, there were steps to navigate, there wasn’t a lift… and, lastly, it was completely impracticable for a child with Alex’s needs.

His friends cannot come and play because everyone’s needs are so different. And noone has a house as big as the school hall it would need to accommodate them.

So he is isolated.

We found one playscheme. It was 20 minutes away at another special needs school. The scheme was consistently over subscribed but they always made sure Alex got some time there. They just… got him. Messy play, painting, water play, swimming, sensory rooms, soft play… all the pictures they sent home showed Alex just having a blast.

Somewhere new.

With other children.

Not with his parents (again).

Socialisation is so important for all children but especially so for children with additional needs, just because it’s so hard for them to get any. It takes so much more effort.

So this scheme was a godsend in that it fulfilled all the above and meant we were able to continue working. It can be a bit of a taboo subject when it comes to children sometimes, especially those with additional needs, but we both want to work and it is so important for us both. Not only because we need to put food on the table but also… self worth… a sense of who we are… a different purpose.

But then, as I submitted my form for the Autumn half term, the woman running it asked me to confirm where we lived. As it turned out that, through a small administrative error, Alex should never have been allowed to go to this scheme in the first place. Whilst the scheme was in the same county as us, the county – which takes over 2 hours to drive from one end to the other – has been divided into (still with me?) 5 district councils and 2 unitary authorities and… those wiggly lines made Alex ineligible.

I’d understand it if, right from the off, they’d said, effectively, ‘No, your name’s not down, you’re not coming in’… but two years in to turn round and say, ‘Oops’…?

Whilst I don’t wish to sound 7, it’s not really fair.

I don’t have any other options. We have previously tried another – brilliant – scheme in the right part of the county but it’s an hour away. So to take him, drop him off, go and get him and bring him home would be a 4 hour round trip for me. And 2 for Alex. That’s not sensible. There is another – supposedly brilliant – scheme 20 minutes away in the other direction but… it’s again in the wrong county and again Alex is ineligible.

The woman who I’ve been emailing and whose mind I’ve tried to change suggested an evening meet up session which is an hour away. And in the evening, when Alex is in bed. Because he is only 6.

Which leaves Alex stuck at home with the same adult caring team and us unsure how we’re going to get through the holidays.

All we’re asking for is – that word again – a more ‘holistic’ approach. ‘See the boy, not the county borders’… isn’t going to win any advertising prizes but that is, essentially, it.

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Mummy, really, I don’t get to go back? But it was fuuuuuuun…

Trolley? What trolley?

Some of you may remember when I waxed lyrical here about the simple pleasures of being able to take Alex supermarket shopping. On the face of it, I appreciate, it may seem odd getting so excited about taking him food shopping. Surely it’s nicer, easier, quicker… without him? And, you’d be sort of right. When I go without him I take the ‘single person’ trolley… I fly round the aisles and can weave with abandon through the people safe in the knowledge that my usual travelling companion is safe, elsewhere, not about to try and nick someone’s shopping from their trolley. Or pull stuff off the shelves.

But shopping is something we do together. In some ways it’s obviously not the shopping itself it’s… being together, sharing an activity, sharing some time… somewhere that is, crucially, warm, dry and accessible. I think I’ve definitely said before it’s not so much Alex’s disability that limits where we go, but the accessibility of the location we’re considering. Supermarkets are winners. And whilst it wouldn’t necessarily be my first choice… you compromise a lot when you have a child with additional needs and just getting Alex out of the house, somewhere different with lights, friendly people. It’s a winner.

As part of that post I know I explained how grateful we were for the Firefly/ Cerebra trolley that Sainsbury’s had bought as it just added years to the time we can take him out. Now, thanks to tireless campaigning Asda have them in stores and Tesco are trialling them too.

We all like choice. So I decided to branch out this weekend and thought I’d try Morrisons instead. They have nicer bread (I think…). Without wishing to sound like ‘Disgusted from Tunbridge Wells…’ imagine my surprise…

‘Hi, I haven’t shopped here before, could you show me where the additional needs trolleys are?’
Pause. ‘Hmm, well, I think we’ve only got the wheelchair ones. Would that work?’
‘Not really, he’s only 6 and his wheelchair is small. You’re sure you don’t have any?’
‘Well, no, but let’s have a look…’

We look.

‘No, sorry…’
‘You don’t have any? Not even the old school ones?’
‘No. I think head office are trialling some…? Would you like someone to go round with you to help?’

Here’s what I didn’t say: ‘That’s really kind, but I don’t want someone to come shopping with me because then I will feel inhibited in every aisle… feel silently judged at every purchase… I obviously wouldn’t be able to double back if I’d forgotten anything because I’d feel like I was totally wasting their time… and I really couldn’t browse. It would be miserable. Moreover, I find our independence chipped away at every day and an additional needs trolley just puts that off a little’.

I just said: ‘No, thank you’.

She was very kind, didn’t make me feel awkward and took my details saying someone would be in touch.

And I slung a bag off the wheelchair.

I checked the website later. It says: A trolley with padding and straps for disabled children up to the age of 7 years is also available.

There wasn’t any evidence of that at the store. And it wasn’t something the staff mentioned.

Morrisons, I think you’re the last of the Big Four? It’s time to do some catching up.

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Mummy, what kind of bag is that ruining the look of my chair?? Flowers?? Leaves?? Where’s my usual trolley??

Whose blog is it anyway?

There have been a number posts and discussions over the past weeks and months about parents of disabled children and their decision to blog.

Do they invade their children’s privacy?
Do they try to speak for their child?
If their child could communicate somehow would they be happy with what their parent had shared?

Do they – really – have any right to share this much online as who, really, is it benefiting? and, shouldn’t they – we – just be content to parent? I paraphrase that last one, but you could read it that way.

I can only speak for myself.

Blogging has given me the space to think about my – our – life and how – not so much Alex himself – but how much Alex’s disability affects and shapes our lives.

Blogging has allowed me to connect with friends and family, people who don’t live our every day, and enabled me to share with them – you – how our life works. This has been so important to me because I know people don’t like to ask too many questions, but that they wondered how we’d cope, how we’d manage, what the fall-out would be and I wanted to show that it was gradual, that we changed, but that we survived, developed, grew and almost re-formed into a different family unit than that which we’d envisaged but one that functioned and thrived. That we were happy.

Blogging has given me the opportunity to talk to and connect with other parents of children with disabilities. To compare experiences… to let each of us know we weren’t alone and to support one another as we came to terms with our own feelings, with those of the people around us… and also how to deal with the strange behemoth that is The System that tries it’s best to support us and the very particular needs that our children have. And that sometimes that system is slow… as it tries to alleviate some of the pressures that our children’s situations inevitably put upon the rest of the family – however far that extends.

Before the internet… I never would have had those opportunities. I’d have been so incredibly isolated. Here I have you all to support us. And the overwhelming love that comes through to us and to Alex was something I hadn’t anticipated but is so appreciated. I don’t feel like we are walking this road on our own.

I am careful not to share too much. I barely talk about my husband. He is so involved in every aspect of Alex’s care, he advocates for him, is his champion in conversations, but he is a private person, doesn’t like social media, and I respect that. This is not his story. And Emma. Emma is at the centre of my thoughts. Will her peers read this? How will they react? And so I try to be careful not to involve her too much, though she loves to be a part of Alex’s story, always wants to know what I’m writing about and is happy to have her pictures included. And sometimes… what she says is so important because it shapes my thinking as well. Because all children make us think in a different way. Their leftfield approach is invaluable.

And Alex. What would he think?

Here, I can only guess. If one day he can tell me he’s not comfortable I would stop. But in the mean time…

I’d like to think that he knows his Mummy is happier telling our story. That by sharing it she feels a sense of cathartic release that you could see as selfish, but she knows to be overwhelmingly beneficial. By sharing she hopes she has arrested her family’s drift towards isolation… that it has helped people to understand how life is in their home. And how important it is to have people around them. He’ll know that people understand some more about not only their life’s challenges but also it’s happiness too. That by talking to other parents his Mummy has learned so much, has gained in confidence to advocate for him and, therefore, all of his family.

He’ll be glad I don’t talk about poo very much :-)

Ours is only a very small story in a very small part of the blogosphere. But it’s our story. And I’m happy telling it our way.

And if I didn’t share it I’d never be able to show you this video – look at my boy move! (and yes, those are more xmas pyjamas…)

Guest Post by Alex – on why Christmas is a bit fab

Here’s what I’ve learned about Christmas…

It’s the most fun. I really don’t want it to end.

There’s lights – so many lights! – on the houses, in Christmas trees, people’s gardens… and an awful lot in my room.
Makes note to self – stop Mummy telling people I like lights, I do but… I’ve now got a double planetarium in my bedroom…

People seem to do a lot of lovely singing. I’ve heard loads of pretty carols and Emma had the Christmas playlist on what Mummy called ‘heavy repeat’ all the way up to Christmas Day. Singing always makes me smile. Even Daddy’s.

It seems to rain a lot. Is that right?? All the cards I’ve seen have snow in them…

I get loads of very yummy food. I think Mummy and Daddy were a bit tired at the end of Christmas (they kept saying ‘never again’ anyway…) but the food just kept coming! Why don’t we have this all year round? Christmas pudding is amazing, chocolates are everyone’s favourite food and why is caramelised onion cheddar for December only??

I don’t think I’ve seen a green vegetable for days… I’m hoping that if Emma and I keep really quiet we never have to eat broccoli again.

People gave me such lovely presents. I have the coolest Wookie hat…

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… lots of books which have buttons to press (my favourite – by far – is the one where all the animals have different sounding farts!)… toys that light up, instruments to rattle and some new trucks that make extra specially loud noises (which I know we all enjoy :-)) They were all really thoughtful, thank you so much. Though, although I know Mummy will disagree, I really do have enough pyjamas now…

I have slept really well. Maybe it’s the new pyjamas?

Most importantly though everyone has slowed down. Everyone has time to play with me. Christmas is this yummy time when there is very little else to do apart from hang out with the people you find yourself with.

I have loved every minute of that.

We have played peek-a-boo with all my new bits of floaty material… my Aunt insisted on putting toy after toy down my top a lot (I wasn’t entirely sure about that game, but I humoured her as she seemed to be having fun…) and everyone has helped me interact with my toys. And with them.

I have laughed and giggled with everyone.

I love people.

They make me feel… connected… part of the world.

I am joining in.

I often see my Mummy with a bit of a happy tear in her eye when that happens. She says it makes her happy to see me play with other people.

That they want to play with me too.

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We hope you all had a very Merry Christmas too and wishing you a very happy, and peaceful, New Year…

Alex
xxx

So much more than What you see…

It’s hard to encapsulate Alex in a few words. In a nutshell, to try to sum him up, I might say, ‘Well, he doesn’t walk and he doesn’t talk and…um, he needs help with pretty much everything.’ And that person might go away thinking that Alex can’t do anything, is just a bundle of boy, unresponsive, in our house.

Which would be wrong.

If I had ten minutes I would go on to say…
‘But, hang on, here are all the things he can do!’

He knows it’s me when I go into him in the morning – he sits up, makes happy sounds and is desperate for a cuddle to say ‘hello, it’s good to see you’.

Alex gives the most amazing hugs.

He helps with getting dressed – knows when to put his arms in his sleeves, anticipates clothing going onto or off his head and, so much more excitingly for me, when we undress him he not only pulls one arm out of a sleeve but knows to use that hand to pull the sleeve off the other arm. Honestly, I nearly cried when I saw he’d understood that.

He helps with nappy changing too. He’ll pop his bottom up right when we need him to which just makes the process so much easier. And quicker.

Up go his arms in response to ‘Do you want to come up?’

He knows the sound of rustling probably means food. He’ll stop what he’s doing, turn his head and try and find the source of the noise. Then he’ll look at us, hopefully… Mummy, Daddy, Emma – what have you got…? (and where is mine??)

When he’s sat at the table and someone comes in the front door: he hears. And he cranes right around to see who it is.

He looks for the buttons on a push button book. Uses all his might to push them down, hear that noise.

When his school take him swimming they tell me he’s progressed from hanging on to his teacher for dear life, to floating with a buoyancy waistcoat and now, just hangs on to a woggle. All casual. He’s relaxed enough that that’s all he needs. He knows he’s safe.

He remembers that certain people we know always have watches, or bracelets, on their wrists. And he looks for them each time we meet. Searching for the shine.

His supported walking is amazing. You can feel, when you walk with him, how little he needs you there. How much you are simply a security blanket.

He will not stop talking! Not ‘proper’ talking… but his babbling sounds – which are grouping together nicely – are there. Every day. Shouted quite loudly over our conversation sometimes. In an ‘Oy, what about me?’ kind of a way.

Cake is one of his favourite foods.

Egg is not.

He clocks that we’re going outside when his coat goes on and once we’re there… he’ll flap his arms to tell us – and the world – how happy he is to be out. Blown by the wind. Feeling the sunshine.

He can blow the best raspberry’s I’ve ever heard.

He makes the most complicated clicking noises with his tongue that the rest of us cannot replicate.

He loves – loves! – a bath.

He’s sociable. Enjoys a crowd. Loves the noise, the light.

His smile, his infectious laugh… Make everyone else smile too.

Strangers smile at him. With him. All the time.

My boy is so much more than the sum of his parts.

It just takes me longer to tell you.

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Mummy, that’s quite enough [blushes] but check out my walking!!

Dear Secret Teacher…

Does anyone else read Secret Teacher in The Guardian? I think as a parent it’s always interesting to read – to see inside the classroom if you like.

Yesterday’s had this somewhat emotive headline:

“Either he goes, or I’m taking my daughter out of the school.”

The secret teacher on why they think mainstream inclusion for children with special educational needs is not always best for the child or their classmates.

And my heart did that sinking thing.

Reading it, it’s a broadly balanced piece. It talks about the issues faced when SEN children possibly shouldn’t be in mainstream school, that if they have extreme behaviour then this can be detrimental to everyone’s learning process and if they are simply being ‘managed’ then how is that ‘inclusive’? And I would agree that, given that set of circumstances, no-one is gaining anything from the experience.

I take issue however because no solutions are offered and the gateway is opened for people to tell us – us, the parents of children with SEN – that our children have no place in mainstream, that they should reside wholly in SEN schools, that their needs can be better met in these schools – thereby allowing the neuro-typical children to get on and, let’s face it, learn in peace. The underlying message there is this: we don’t want them here, they’re hard work, they detract from everyone else’s school experience and really, what are they adding? Let’s pack them off to different schools where we don’t have to see them or worry about them again.

And right here is a mixed message to the next generation: we talk about tolerance, we talk about inclusivity – but those children don’t count?

So I commented on the article on Facebook. I don’t usually. But I just said here was how inclusion worked for Alex: that he accessed specific lessons at his mainstream school from his SEN school and this seemed to work well both for him and the pupils in his mainstream classroom. And people engaged with my post. Many many stories of other schools where inclusion had worked, had been approached differently both now and in the past and the lasting memories this had created for both them and the mainstream children they had been alongside. I felt heartened.

Perhaps this school – every school – should take a look at the bigger picture, take a more holistic approach… do some thinking. I can’t be the only parent that, when sat in parents evening, I don’t only want to hear about my typically developing daughter’s academic achievements, I want to hear: is she making friends, is she learning empathy, to listen to the views of others – is she growing as a person? Helping all our children to grow up together would surely help to achieve this.

As a society we’ve – thank God – decided that children with disabilities, additional needs, special needs – call it what you will – are worth saving. They are no longer fed to the wolves, left outside doors, given away to institutions never to be thought of again. We keep them in our families, these beautiful children of ours, and we bring them up the best we can.

What I’ve learnt through Alex is that our family is no longer an island. We need a broad base of support and goodwill to keep us going. We need people to connect us to the world. Not to ignore us. And these children of ours will be dependent on society for the rest of their lives. They are the ‘vulnerable’ people we so often see spoken of in the news [accompanied by that head just cocked to the right to show sympathy].

They will always need help, compassion, support. They will require empathy on a grand scale as they often cannot speak up for themselves. And this has to start from the ground up. With children. Through schools. They don’t have to always sit at desks together, but that’s not all school life is. They can take art lessons together, play instruments together. Eat in the same lunch hall. Play in the same playground. Learn from each other. SEN children have much to share and teach to anyone who engages with them. Just like all children.

My son attends an SEN school, but he has inclusion for an hour most days at the mainstream school nearby. I’m so glad because the schools have found a way to include him which makes it work for all the children. We wanted to do this – for as long as it’s feasible – not to benefit him academically, but for socialisation. To keep him involved in the world. A world which is mainstream after all.

His SEN school is brilliant, I love it. They have hydrotherapy and sensory rooms and take them horse-riding… it is nurturing. The staff are so reassuringly dedicated. It has done wonders for his development.

I love his mainstream class because it is full of boisterous children. Children who say ‘Hello Alex!’ as we walk home. Children whose parents smile at him. Recognise us in the street. Make us feel part of the town. Having a child who is ‘different’ can be isolating for the whole family. Inclusion… well, it stops that from happening.

Alex loves being around other people. He finds them fascinating, and he finds them funny. Once children have got over the fact that he is different to them – that he doesn’t walk, but is in a wheelchair, that he doesn’t talk, but can communicate his needs in other very effective ways – they accept him and either play alongside him, ignore him totally or try to engage him on some level. Crucially they accept him.

The more this happens, the more – when these children are grown, and making government policy – they will remember the humanity of these children; of my child. And they will include them and they will support them. Because there isn’t – as one woman commented on the Facebook thread that followed the article – an SEN adulthood; at that point everyone comes together into the community. So those formative years – showing that these children aren’t ‘other’, aren’t ‘scary’, they’re just a little different and, if you’d just give them a chance, have a tremendous amount to offer in terms of love and sheer enjoyment of life – are critical.

When I’m no longer around to advocate for Alex I’d like to think that society – not just his sister – will have his back. A creative, sensible approach to this at school has to be where it starts.

You can see the article here:

http://www.theguardian.com/teacher-network/2015/may/23/secret-teacher-support-inclusion-but-not-at-any-cost?CMP=fb_gu

I can’t share a link to the Facebook page. Which is annoying. Or I’m just not technical enough…

Was that the post…?

Close up on the inside of a front door – specifically the letter box.
As we pull back an extremely thick A4 brown envelope is pushed through the letter box.

Switch back to close up on the letter as it drops onto the mat in slow-motion and we see the address for DWP on the back.

‘Oh good,’ we hear off camera, ‘The DLA renewal pack has arrived, I do enjoy filling that in’.

Said no parent of a child with additional needs. Ever.

DLA – for those of you new to this benefit (for it is a benefit) – stands for ‘Disability Living Allowance’ and is money to help with the care of a child whose disability means they need more looking after than a child of the same age who doesn’t have that disability. It’s divided into two parts – care and mobility – and those parts vary depending on how much care your child needs during the day and night compared to a neuro-typical child of the same age and how mobile they are when compared to… well, you get the idea.

This is a form/ pamphlet/ short story that has to be filled in because it is the gateway to be accepted as ‘disabled’ in the wider world. ‘Are you in receipt of DLA?’ is a much asked question on forms/ questionnaires/ waiting room tick lists where the answer more often than not has to be yes in order to proceed forward to the next stage of appointment/ funding/ equipment provision.

It is a soul-destroying form. For starters, it’s not a form, it’s an overlong pamphlet, or a short story. It runs to 70 odd pages and though it does have large type that doesn’t take away from the daunting feel of it. When I do Alex’s I have to steel myself. The process usually goes:

1) Letter arrives. I ignore it and put it on the pile of other paperwork I can’t deal with.
2) Because of its size, it remains quite dominant in the pile – even under school dinner money requests and free papers – and I know it’s there. Waiting.
3) With a little sleep behind me and feeling brave I open it. Then I remember how much I hate it and re-file in the ‘to do’ basket.
4) Eventually, with deadlines looming I attack it with vigour. I get maybe… half way through and decide I’ve been worn down enough for one day and leave it.
5) Repeat step 4 a week later. Realise I need a mound of paperwork photocopied in order to prove Just How Disabled my son is and take it all down to the library to get that done.
6) Pile everything into the envelope triumphantly, post it off and reward self with chocolate.

This routine is practised by thousands of parents of children with additional needs up and down the country.

Because. And this part is important. We are told to, and indeed we do, focus on the positives of our children every every day. Every tiny achievement, every miniscule step along the developmental curve, every – frankly – not bad day… it’s a winner. We celebrate, we feel our lives are working well.

But this form?

Every single question is about what they cannot do. Can they dress themselves? Can they feed themselves? Can they go to the toilet/ take a shower/ leave the house by themselves… And every time it is a ‘no’. The further into the form I get, the more I find myself writing ‘Alex is unable to do [insert activity] by himself. He needs full support from a 1:1 in order to fully access/ engage in it’. It makes for depressing reading. And, my favourite: ‘Can your child walk? No? Skip the next 30 questions’.

Before my eyes Alex transforms from my beautiful, giggly, jolly little boy… A boy who loves to explore his environment, study his toys, ride his bike… to: ‘Alex cannot…’, ‘Alex is unable…’, ‘Alex requires…’ He changes from someone who is growing and changing as a person to a huge burden on my time with no discernible upside for him or myself or the rest of my family. Once finished I have to really remind myself of all the truly great things about Alex and our life with him.

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This is a complicated post really because, don’t misunderstand me, I’m incredibly grateful for the end result, this is much needed revenue. I think I’ve mentioned before that we never talk about money but having a child with a disability is expensive. We wouldn’t be fund-raising otherwise. Everything costs more… from the big items – the bed, the tricycle, the car seat – down to the smaller every day items: twenty different sippy cups to find one they can actually hold; bigger car to accommodate enormous buggy and still leave room for everyone to get in; more petrol because you have to drive everywhere when you would possibly have walked – not to mention the hospital appointments… more washing going on because of more clothes ruined through play/ food/ *whisper it* poo – long past the age when you would have reasonably expected that to have ceased.

And. The elephant in the room: making up for lost income. That extended maternity leave when you realised where your life was headed, that part time job because full time doesn’t fit with a disabled child, that untaken better job/ promotion because you just can’t guarantee you’d be reliable and at least your current employer understands your situation.

I just wish there was an easier, more positive way of working this form. To not leave me – and countless other parents – feeling emotionally bruised at the end of it. To leave us putting off till the eleventh hour something that takes weeks to go through the system. And- election over – I worry that this system will change again. Probably not for the good.

Having filled the form in three times now during Alex’s busy nearly five years we’ve been awarded DLA till he’s 18. This is a very much silver-lined cloud. I am over joyed not to have to fill it in again till then but… oh, he really is *that* disabled? You don’t think that’s going to improve? Well, maybe not, not in your tickbox world he won’t but in mine… that boy has a long way to go yet.

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Mummy says please send wine and biscuits. And cake. Always cake.