Today in Westminster…

So today I went to Westminster to listen to the APPG on Rare, Genetic and Undiagnosed Conditions. They were talking today about undiagnosed conditions and the impact of DNA sequencing. As this has happened to Alex, I – somewhat nervously – talked about our family experience. This is what I said.

When I said I was happy to talk today, I hadn’t anticipated the request for a 10 minute talk. I’ve put this together in brief moments over the last few days. I’m really not a speaker, I’m a blogger, and I realise I’ve written a blog here.

I was asked to talk about being given a diagnosis, what it meant to us… but I wanted to also tell you about our son, Alex as that will give you some context and appreciation of our family and how we got to where we are today.

This is Alex. He is a beautiful, sunny little boy. He has a cheeky inquisitiveness about him that I love. He gives the best cuddles. He progresses slowly but surely. He’s crawling. I never ever – ever – thought he’d do that. I truly think one day he may walk. This both excites and frightens me in equal measure! But we push him on to develop because that’s what we as humans do. Instinctively I think. And we just hope we can manage it. And you can see how much he enjoys that independence of movement. Independence of decision.

This is Alex. He lives at home with me, his dad, and his sister, Emma. Their relationship is one to treasure. Sure he annoys her – and I love the normality of that. But they love each other. When Emma is away staying at her grandparents she always calls to’ talk’ to Alex. She sits in his room when he’s asleep and tells him her worries. She plays with him as only a sibling can – rough and tumble on the floor. She is fiercely loyal to him. She always cuddles him if he cries. She lights up his face like none of us can.

This is Alex. He has no over arching diagnosis. He cannot walk, talk, use a knife and fork or go to the toilet. He is reliant upon 1:1 – sometimes 2:1 – support for all his needs and care.

We realised pretty fast that something wasn’t right with Alex. We probably had about 8 weeks of enjoying our new baby before the doubt set in. I’m sure it would have been longer if we hadn’t already had Emma but we knew the trajectory a baby should be following and Alex just wasn’t on it. He preferred light and shade to faces, he didn’t react to smiles and crucially wouldn’t make eye contact.
‘He won’t look at me Mummy’.

Emma was 5.

Our first GP was hopeless. She diagnosed Aspergers and sent me on my way. I was so surprised – because I still couldn’t really believe that anything was actually wrong, not really, I was just asking for reassurance, to be told I wasn’t a neurotic mother – that I didn’t think to question her ability to diagnose that at 8 weeks. We went back for a second opinion. Our second GP took one look and thought neurological. He was very kind but you can’t soften that blow. When I look back at those times – at those long days of disbelief, anger, grief… I don’t actually know how we got through the days. I know I cried a lot.

We were desperate for an answer to what we were all asking: What’s wrong with him? Could we fix it? Nobody could tell us. Our paediatrician thought he was blind. It became abundantly clear almost immediately that he’d based this on absolutely nothing scientific. Just a gut instinct? Hopes raised and dashed.

Alex’s MRI came back normal. Blood tests revealed nothing. Lumbar punctures (my little boy held down shouting against his will. The one time I walked away) revealed nothing. And so we arrived – with alarming speed – at our genetics department.

We all want answers to questions. Alex was our question. With Emma our neuro typical child living proof that we could do this – what had happened? Was it something we had done? Had work been too stressful? Had I eaten the wrong food? Was our DNA out of whack? Should we want another child would it happen again? And… As and when Emma asked me if her children could be affected… Could I please have a better answer than ‘I don’t know?’

We are always amazed I think at how much ‘they’ don’t know and how much there is still to learn. Our geneticist took blood samples from everyone and sent them off for test after test after test. All came back negative. And as all the scary things were struck off the list… We were still no closer to an answer. When they suggested DDD we jumped on it. The last saloon chance if you like. We spat into our tubes, gathered spit from Alex who thought it was hilarious, and waited. And waited…

Spool forward two and a half years and you find a different family. One who’s got used to having their youngest with a disability… who have found support and comfort from both their friends, family and SWAN. One who now celebrated Alex’s achievements and worried far less about a diagnosis. Who have stopped spending their free time in hospital appointments and worrying at Google but instead are trying to build a life that works for them all. I’ve even gone back to work.

And then our letter arrived. Saturday morning. And I knew the moment I saw it what it was. I’ve thought about that moment a lot. Because I cried when I opened it. Because it changed our lives again. Blew apart our safety bubble and threw us back into all things medical. That weekend was hard because all the letter said was – we think we have something, give us a call. I couldn’t. Because it was a Saturday. Please don’t ever ever send letters out on a Friday. It just gave me two days to overthink, to try not to think about this Thing. What was it they’d found? I kissed my boy more than ever this weekend because suddenly he seemed so much more fragile than he had before.

It took me until 4pm to get hold of my geneticist. One of the longest days of my life. I rang everyone to try to get hold of her. And she was great. She talked me through what they had found – a dink in his DNA pointing to Noonan’s syndrome. And she told me what she knew whilst I googled it. A month and a half later we went in to talk to her in person. This was a very odd time as life went on as normal but this – what felt like – life changing meeting was coming. We discussed Noonan’s some more. I breathed out as it seemed remarkably benign. Although we all wondered if he fitted as Noonan’s children tended to be small for their age – Alex is not – their learning difficulties tend to be mild – Alex’s are not and – critically – there tend to be cardiac issues. Alex has none. But we like to believe data, to believe in numbers.

In the December to that initial May meeting another letter came out from our genetics department: ‘I have been approached by the DDD team to confirm that we do not feel that the CBL variant is the whole cause of his problems and they are pursuing an alternative variant about which they were not prepared to release details at the time. I am sure they will do so as soon as is possible’.

I rang and told them I didn’t feel this was an appropriate communication. It’s the equivalent to vague-booking, with the exception that even if I ask, there is no more information.

When families enter the DDD study and the like it is because there is nowhere else to go for answers. They are desperate. They are expecting a lot – and I include our family amongst those number when we joined up. We are hoping for our wizard of Oz moment. But time passes, and life moves on and we became almost afraid of a diagnosis. We liked the safety of a limbo status. And I know we aren’t the only ones. So this bundle of emotions – fear, anticipation, nervousness – all needs to be managed. Far more than it is currently. And maybe this is something that wasn’t considered when these studies were set up.

I understand the need to communicate and keep up to date… but I do feel there needs to be continual dialogue between DDD and the families it takes on. The importance of constant genetic counselling isn’t something to be underestimated. Family expectations change, needs change and this is life-changing information that’s being supplied here. It was always my ringing to ask if there were any news. Could there be a 6 monthly call, even if there is no news?

I don’t feel the needs of the family are being kept paramount. Sometimes science runs away with itself. I understand that everyone is different, and that budgets are tight but I feel that there needs to be a more tailored approach here. DDD and studies like it are on the crest of scientific waves but they aren’t operating in isolation, their results are not anonymous… they are impacting people here and now as well as improving people’s chance of a diagnosis in the future. There has to be a continuing dialogue as to how families would like information provided and also of managing expectations. That the answers – if they come – may just produce more questions. And I think that now the results are tumbling in those of us with results can help shape how the next set of parents are worked with.

This is Alex – a bundle of mixed up DNA, a conundrum. But please also remember that he’s not just a genetic problem to be solved: he’s our son, Emma’s brother, An intrinsic part of our family.

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Mummy? Did you go somewhere without me today…?

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On how life is just one big Uncertainty. Which isn’t always ok…

I think what ‘undiagnosed’ means to me is… uncertainty. Our whole life is suddenly uncertain.

When your children are born you only then realise how fragile you are and how vulnerable you have suddenly become… and yet within that you can still plot a broad path for them in your mind … first steps, first words, first days of school… right up until the day they leave home and you hope hope hope that they’ll be just fine on their own.

With disability, an undiagnosed disability, that is ripped from you. And it’s not ripped from you overnight but slowly… gradually… after you’ve all realised something is amiss, that that path will not be your path, that your child will plough their own… after you’ve held them still (held them down… walked away when you couldn’t bear it anymore) and put them through blood tests, lumber punctures, eye tests… when they have protested so much that you Will Not do Anymore… when genetics have thrown their hands up and said ‘We don’t know… We may never know…’ When that has sunk in… you have reached your no mans land.

You don’t fit anywhere.

All the support groups you have found are for individual symptoms but with no over-arching diagnosis, where can you go? It is a very lonely, very isolating place to be. You question yourself. Is it really as bad as everyone seems to think it could be? With no diagnosis perhaps my child will just catch up in time? Does everyone think I’m making this up?

And this is why SWAN UK is so important. Everyone needs a home, a tribe, and we are a tribe. A tribe of misfits if you like. Those shapes that just won’t be sorted. No child is alike but our issues, challenges, as parents are the same. We all understand the vagaries of no diagnosis. How this can affect coordination and provision of care, how it’s hard to plan for any further children without one as noone can give you odds and how life is… uncertain.

Alex, having been given a tentative diagnosis of Noonan’s Syndrome has pretty much had that withdrawn. Whilst his DNA glitch matches that of Noonan’s nothing else seems to. He is tall for his age… he is more severely physically and cognitively affected than other children with Noonan’s and, critically (though wonderfully) has no heart defects, which is a sure sign. Our consultant took one look at him and said, to all intents and purposes, that he would never have diagnosed Noonan’s. And then… DDD came back to genetics and said – and again I paraphrase – Do you think it’s Noonan’s? because we’ve found something else that might be useful, though we’re not sure what it is yet.

And back they disappeared down their scientific rabbit hole.

This was back in December. And so there we were, riding the crest of the scientific wave… dropped back into uncertainty again. Recalibrating life… again.

I have no religious leanings but, truly, every day with Alex is a blessing.

Because he is a beautiful, funny, cheeky little boy who I love with all the ferocity of a newborn.

Because we don’t know what’s coming. We may never know what’s coming. And that weighs on you.

We don’t know how he will grow and develop. We have no prognosis. I panic at every alteration in his behaviour. My heart fell when he stopped being able to bite his toast recently, I feared he was somehow regressing… a day later, his tooth dropped out. No other parent – apart from one in my situation – would have felt that. It’s not normal, I know that, but that is our reality. And ours is just one story.

Swan is a bringing together of parents.

Parents who understand one another.

Who get it.

Who support and advise one another in a way that is unique to our situation.

That’s why we want to find as many other parents with undiagnosed children as possible. 6000 children are born every year with what will turn out to be an undiagnosed syndrome. That’s a lot of families with unanswered questions. Together we re-build each other’s confidence, tell each other when we are – frankly – being daft… and sympathise in situations we fully recognise, because we have experienced them too.

It is therapy.

April 29th is Undiagnosed Children’s Day. It’s a day to highlight our beautiful children and our unique situations.

But – and here’s my ask – they need money to keep this amazing charity going. Here’s the links:

Text SWAN11 (or whatever number you can afford) to 70070 or donate here https://www.justgiving.com/swanuk/

… every little does genuinely help.

Thank you.

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This was us at Peppa Pig World recently – funded by Swan. We would never have gone otherwise. We had the most fun. Alex loved the new people (wasn’t sure about the rides!) And Emma conquered her fear of rollercoasters.
But Mummy, you didn’t!
Sssh!

This post joins a host of fabulous Swan parents who blog about their experiences. All unique.

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Boy about the house

My little boy is moving.
Properly moving.
I have to just check you heard me: He is Moving.

Things I never expected Alex to do #543: Crawl.

Maybe I just set my bar low for him.
Maybe I just didn’t want to be disappointed. Again.
Maybe… I was ok with where he’d got to.

Every new thing that Alex works out how to do is nothing short of a miracle.
I don’t use that word lightly, but…
I always think how much harder he has had to work to get to the point where we all say… ‘Wait… look… is he…?’

I remember where he started from. A little boy who could barely hold his head up starting nursery… unable to sit… hold a spoon… grab a cup… use his hands in any meaningful way.

How we cried that day I held him at, what? less than a year… and he stretched a hand over and slowly, slowly, flipped closed an egg box carton that we had in front of him.
How we made him do it again to be sure.

I sometimes don’t understand how he’s been able to get this far. How he’s blossomed into this inquisitive, happy, determined little boy.

How – by mastering crawling* – we are suddenly able to understand what he wants to do.

He demonstrates quite visibly where he wants to go in the house. His favourite parts of our kitchen are, well, all the sensory ones:
– the vegetable rack (all those rustling onion peels)
– the stereo shelf (all those wires)
– under the table (I think he likes the safe space-ness of it. And the look of the bricks on the pillar. I have to assume it’s the symmetrical lines…)
– the baking tray shelf (Noooooo, don’t pull them onto the floor…. *crash*)

If I stand away from him, show him his drink, he moves to get it from me.
If I sit facing him and open my arms to him. He comes to me.
When his father arrives home, Alex hears the door opening, recognises his voice and turns and crawls to him.

He knows what he wants to do. Can now do it. How amazing must that be?

I am suddenly toddler-proofing my house. Something I never expected to do. And I love it.

What a perverse thing to say.

Don’t get me wrong… I tiny-bit miss him staying in one place – I knew where he was, and he didn’t move the moment I put him down… and don’t think we didn’t totally panic as my overgrown toddler got on the move. We were so worried he’d be destructive but he’s not… he’s just… interested… wants a closer look and so, you know, how nice to have some normal going on.

We are shifting vases a little higher up… mitigating all the potentially-sharp things… contemplating locks on the cupboards. And whilst it may be 4+ years later than you’d usually expect it to happen (Alex will be 6 in July)… I’ve long ago stopped looking at his expected milestone dates and just focused on watching his very personal development chug forward.

Never stall.

So far so good.

Alex - veg rack
Mummy… I think these onions are out of date…!

*(I should qualify this by saying his legs don’t move yet – he drags them – so that anything and everything in his path is snow-ploughed along with him. He’s a very effective duster :-)).

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The fact that we have left the house at all…

I read one of those open letters yesterday… you know the ones where someone writes to another person – or persons – anonymously, to enable them to get something off their chest? This one was to everyone, everyone that surrounded a couple and their son, who had autism… who was different… who invited stares.

I read it thinking I’d probably cry, but read it anyway. And cried. Because emotions, they resonate. We are taught, from a very young age, how we are supposed – expected – to behave in all situations: at home, in a restaurant, at school… and as our children grow up we, as parents, nudge them – not unlike the flippers in a pinball game – to mould and shape them into acceptable members of society. Who won’t be excluded. Who won’t be laughed at. Who won’t become embarrassed by their own behaviour. But when it comes to Alex, or this other boy… the gloves are off.

We can’t reason with them. Not in the same way.

They show ‘inappropriate behaviour’.

What are his parents thinking?

Alex’s squeaks of delight are loud and can drown what you are saying.

The way Alex flaps his arms and legs to show excitement can knock cans off shelves, food from conveyor belts…

And when he wants something, he really wants something NOW – by whatever means necessary – and it’s all I can do to peel it from his hands.

Sometimes I don’t think people realise, and really why should they, how much effort it can take to get Alex out of the door. I think of – and laughed out loud at – Michael McIntyre’s sketch about getting his children to leave the house but with Alex… it’s magnified. Because unless he is provided for – for every possible need – we can’t relax.

Where is his coat/ shoes/ scarf? Alex doesn’t know and 3 different people in the house may have put them somewhere ‘sensible’.
Which wheels should we take? Buggy, wheelchair or the off-roader? No, we can’t take more than one, there isn’t room
Do we need changing bag/ spare set of clothes/ assisted seat if we’re being brave enough to eat out?
Why has no-one got Alex dressed yet?

We went away to visit family last weekend and it was lovely, and I’m so glad we went, but the military planning hurts my head sometimes. You are constantly planning for every eventuality and you need all the solutions with you as, the older he gets, mainstream solutions don’t always work.

Nappies to fit Alex aren’t sold in supermarkets as he’s past size 7 so you have to take them with you. They are bulky.

Alex can’t sleep in a normal bed as he likes to move about and has no sense of danger so the travel bed has to come with us. It takes half an hour to put up. And half an hour to put down. And Parent 2 has to watch Alex whilst Parent 1 puts it together. I love it, but really, you have to *really* want to go away.

We have to be in the right mood to go out to eat with the children because (after navigating the wheelchair through the narrow door, past people’s chairs, to a table not in the middle of the room) Alex – see earlier point – loves to grab everything in his reach. And whilst I’m delighted he has this skill, it does mean that menus, salt and pepper pots, other people’s drinks… they aren’t safe and need moving swiftly. And so when I’m presented with a small table to eat around… my heart sinks a little.

I’m aware, as I’m writing this, that lots of you will recognise these situations with your own neuro-typical babies and children. And there I think is the crux of it. They will grow and change and mature and these situations will become easier. I have no guarantee that ours will in quite the same way. With the best will in the world I think Alex’s behaviour will always be a little challenging for every day situations and he will grow taller, and his arms and legs longer. Less easy to fit into society than before.

And all of this I wanted to share with you because – and I think you get this – the fact that we have got outside the house at all is nothing short of a miracle some days. The planning that goes into it and the potential for upsets along the way… means we have to really want to do something. So please don’t stare at our little boy as he shrieks, kicks and grabs his way through the day.

We are out as a family.

Doing something ‘normal’.

We are having fun.

And Alex is expressing himself – to the world. And if you don’t get that… don’t be afraid to ask questions. To understand this boy we love. But leave the double take stare at home.

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Mummy, can they stare at this one though? Because I look cuuuuute!

This is the beautifully written letter I mentioned at the outset. George has an amazing dad:

http://www.theguardian.com/lifeandstyle/2016/feb/06/a-letter-to-the-woman-who-stared-at-our-disabled-son-autism

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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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