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…)

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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

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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!!

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And what do you think Alex would like?

Christmas can be a little tricky when it comes to present-giving for our children. Not Emma, not really, she’s quite easy. She loves magic tricks, books, Lego, anything science related, anything that will make her laugh.

And yet when people ask me about Alex, what he might like, I freeze and end up suggesting Nothing, as there’s nothing he really needs, or clothes, but actually… my little boy has very definite likes. They may be the likes of a 12-24 month old child, not the 5 year old that he is, but it doesn’t make them any less legitimate.

He loves vehicles.

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He may not push them around the kitchen, I may not hear him saying ‘Brrrrrum, out of my way Mummy!’, but I see him picking them up, turning them over, rattling them to see if they make a sound… he actively seeks them out in his toy box. The tiny steamroller is a particular favourite right now.

This bring us neatly to V tech. How we have a love/ hate relationship with V tech.

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Most of you with children yourselves will, I suspect, recognise these. They come in many guises: animals, vehicles (both domestic and industrial :-)) and all of them, without fail… sing. Make a noise. Flash a light. I know that all of us in this house either turn them off, or turn them down because the songs get inside your head and won’t leave. I find myself singing about being a brave ambulance… Emma practically refuses to get into the car if Deborah the bloody zebra is there too… but Alex LOVES them. I don’t know if it’s because they are palm sized, or the repetition of the song or the lights that flash. But they are a total winner.

(Please don’t buy him any more of them though).

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Toys you can manipulate.

This has been a bit of a slow burn. We got him this for last Christmas and – apart from the odd foot chew – it just lay forlorn for about 6 months. But then suddenly Alex got it. Now he’ll pick up him and move his legs and arms around. To see him make that cognitive jump, well… you get it.

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Musical instruments. We’ve talked about this before I know but Alex loves music. He smiles at songs and notes being played. Sometimes, if he’s not too tired, we have a jam session in his room before bedtime (thereby ignoring my rule of ‘nothing exciting to happen before sleep’) – we’ll get out his drum, his bongo drums (that plays La Bamba incessantly), his xylophone (which he loves to play with his feet) and all the shakers we can find. Emma quite often joins in too. Sometimes it’s quite the cacophonous din of us all playing at once. Sometimes it’s just Alex grabbing whatever Emma and I have chosen and playing it himself. It’s just fun. And to have someting interactive to do with Alex is delightful. The pleasure on his face is just there to be seen.

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Books. Books were such an integral part of having Emma; we would read every night, a ridiculous number of stories, all tied in to: ‘brush your teeth before we read another one’. It was (still is) such a ‘together’, enjoyable activity. I was really troubled to think that we might not have that with Alex too. So with Alex… it is different, but still fun. Sometimes I read to him just because it’s a lovely story and, depending on his mood, he’ll get excited by them, squeal at me in appreciation, hit the book with happy fists or grab it to stare, positively digest, the pictures, the text on the page. Other times he’ll ignore me completely. Which is ok too.

By far the best books for Alex are the ones with sounds to listen to, flaps to open, buttons to press. He can find the button, press it down, listen to the toot of a train, the roar of a lion and, again, the grin on his face is worth those times he won’t engage. Most times now he will help turn the pages, even if it’s just some of them, when we read the board books. He uses one hand to pull the page up towards him, the other to flatten it down to reveal the new page. Just like you or I would. Such a proud Mummy.

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Clothes are always good though. Sometimes we can get through two pairs of pyjamas, a jumper and a pair of trousers by lunchtime. An ill-judged nappy change, breakfast, mud spattered up when we try a little walking in the park… all add up. I love to dress Alex in nice clothes but he needs more than perhaps his typically developing counterparts own.

So ignore my first reply when you ask me what he’d like. Don’t be afraid to try new ideas. He’d like most things really. He’s quite the typical child, liking to be distracted by a variety of playthings. Just for the younger age group.

Except the V Tech. Really, we have enough of those :-)

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A very tentative exhale…

This weekend we had respite. A short break, if you like.
Almost exactly a year after we lost it.
It’s a little hard to put into words just how unbelievably….

It’s not perfect, but it may just be the valve we need to haul us through.

Social Services, unable to find us a placement close to home, suggested a short term solution. There’s a couple in a little town about an hour from here (it’s only 20 odd miles but picture: slow roads, single carriageways and tractors, lots of tractors…). They have a lovely bungalow and a spare room to accommodate the tent bed that we use for Alex when we go away. They are lovely. It feels like he is going into a family for the weekend, not just people looking after him – does that make sense? And they ask nurturing questions: what’s his routine, what does he like best, would he like visiting this place? Everything about them makes me think he’s in good hands.

So we tried a few hours one weekend, let him stay by himself and they gave him lunch. All seemed fine.

So last weekend, with my lovely Mum looking after Emma, we dropped him on Saturday afternoon, to be picked up on the Sunday.

And we stayed – just the two of us – about half an hour away.
Just the two of us!!
And we had fun.
Remembered what we were like without the added complications our complicated child brings to our lives.
We drank beer.
We ate fish and chips.
We watched the sun go down.
We stayed in a terrible, terrible hotel… but it really didn’t matter.
Because we slowed down.
Regained our own pace for 24 hours.

And as we went to pick Alex up on the Sunday… I had a small cry.
Not because I didn’t want to see him.
Not because I didn’t want our family back together.

But because… dear God we forgot.

We forgot how much we needed that break. You push through, because you have to, because you love your child, but… I’m so glad there are people out there to care for my son again. To let us come up for air.

And I just hope they’ll stay with us for enough time to find our long term solution too.

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Mummy, why aren’t I in this picture??
Alex love, just for once, it’s just me and your Dad. And we’re camera shy.

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A quick letter to our MP – to ask for some cross party co-operation

Dear David

I know we have corresponded previously on our son, but today I am writing to you as my MP to ask you to join the All Party Parliamentary Group (APPG) on rare, genetic and undiagnosed conditions.

Rare, genetic and undiagnosed conditions are often life-long and serious, affecting multiple systems of the body. Many of them are progressive, meaning that the health and quality of life for affected individuals will continue to deteriorate throughout their lives and many of those affected will die prematurely. The vast majority of rare and genetic conditions cannot be cured and most have no effective treatments. Families like ours frequently experience delays in gaining an accurate diagnosis for their or their loved one’s condition, and can struggle to access appropriate care and support. Or simply find that no-one knows how better to help us and we get lost in the system.

My child has a genetic condition that doctors recently think they have identified – they think he may have Noonan’s Syndrome. This is quite a rare syndrome affecting between 1000 – 2,500 children worldwide per year. We are still early days in this diagnosis and there are many parts of our son’s symptoms that do not fit with typical Noonan’s children so in reality we are faced with more questions than answers. Most children with Noonan’s have mild learning and physical disabilities whereas Alex has quite severe and complex both physical and learning disabilities. I do not know what the future might hold for him – will he walk? Will he talk? Will he have a shorter life expectancy? What will happen to him when I die? It’s incredibly hard living with such uncertainty. Some days it’s ok and then something will happen, something quite small sometimes, and my world will empty over worrying about him. That’s why I’m asking you to join this APPG and to use the group to press for improved diagnosis opportunities, which in turn may unlock access to effective medical care and treatment for my family, and others like us.

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It’s unlikely that I’m your only constituent whose child is affected by a rare, genetic or undiagnosed condition. It is thought that about 50% of children with learning disabilities and 60% of children with multiple congenital problems do not have a definitive diagnosis to explain the cause of their difficulties. Rare and genetic conditions are a significant cause of illness – 1 in 17 people will be affected by a rare condition at some point in their life and 4 in 100 babies in the UK are born with a genetic condition. It is estimated that 6,000 children are born a year with a genetic condition that will remain undiagnosed. That’s a lot of children, and that’s a lot of affected family members. And lives forever changed.

The key aims of the APPG will be to increase awareness of rare, genetic and undiagnosed conditions in parliament and help to ensure that patients and their families – families like mine – who are affected by these conditions, have access to appropriate care and support.

The charity Genetic Alliance UK will be providing secretariat to the APPG, so please get in touch with them by emailing emily.muir@geneticalliance.org.uk or by calling 020 7704 3141, so that they can provide you with additional information.

I hope that you will join the APPG and dedicate a small fraction of your time to what is – to us, and many many other families like ours – an exceptionally important subject.

I look forward to your response.

Yours sincerely,

Helen (Alex’s mum)

Please note: if you require any further information about the APPG please contact Emily Muir at Genetic Alliance UK, emily.muir@geneticalliance.org.uk.

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I don’t care how important this letter is Mum, I did say if you left it with me for for than a nano-second I would have to explore it some more…

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A change in routine

Our routine is about to have a little shake up.

Emma changes schools tomorrow – goes up to big school.

It’s a big moment in the house.

She’s changing from her beloved primary – with one form per year – a quiet, nurturing, small (but not too small) school into the next level up. 5 forms per year. It’s a lot of children and a lot of places for her to get lost/ misplace her school bag etc…

But more than this.

We no longer have to walk her there and pick her up.

Well, for the first week we do – helping them (and us) find their feet, get used to getting up earlier, going somewhere new, meeting different people, but after that… they’re on their own.

And so are we.

Emma’s pretty excited about this and she and her friends have planned, and re-planned, who is picking up who when.

But… I feel a little bereft.

Much as I complain about the daily grind of the school run, I will miss it.

It’s a time to talk to Emma, talk about how her day will be, or how her day has been. Or to talk about Minecraft if I’m really, really unlucky… But it is time together. She, Alex and I bobbing along together, first dropping Emma, then dropping Alex, then me circling home.
And that won’t happen any more. It’ll just be me and Alex. And it’ll be a whole lot quieter.

I love hanging just with Alex. Just him and me. Some quiet us time. But having Emma around when we’re out and about – and more on this another time – just ‘normalises’ life. Keeps you in the mainstream. And if Alex kicks and squeals in his wheelchair whilst we’re chatting, well, that’s simply what he does and we just ruffle his hair. It feels different when it’s just him and I… almost like I have to make more of an effort, to show to the world in a very obvious way that I don’t mind that he’s disabled. Which I don’t. Well, I do but I don’t :-) and when it’s just Alex and I… I feel a little more exposed.

Emma is our shield.

So, a little selfishly I know, I will miss my grown up companion on the school run – whilst also knowing it is time for change. I am both excited and nervous for her.

She is excited and nervous too. But I think she’s ready.

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Mummy, she’s ready, I’m ready – it’s just you!!

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