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.

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

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Caring is sharing… Is caring

When letters come home from school that need to be signed by Alex’s parent/ carer I could circle both.

I am his parent.

I am his carer.

Sometimes it’s difficult to know where one stops and the other begins as they do – quite seamlessly – bleed into one big role.

This is how the Carer’s Trust defines carer:

A carer is anyone who cares, unpaid, for a friend or family member who due to illness, disability, a mental health problem or an addiction cannot cope without their support.

That’s Alex.
And that’s me.

But that’s also his father, his sister, the rest of our family, our friends… we all keep more of an eye out for him than we would do for a neuro-typical boy of 5.

This week is Carer’s Week, a week to highlight the millions of carers in this country who – unpaid, or, frankly as near as dammit unpaid – look after those members of their family who can’t look after themselves.

You’ll all know the saying that it takes a village to raise a child… it takes a town, a city, to raise a child with additional needs.

I do it willingly. He’s my son and I love him unconditionally. I love him fiercely in a ‘to the ends of the world’ kind of way. We seem joined by the smallest piece of elastic. This love can be all encompassing just because he cannot look after himself. Cannot speak up for himself.

Because I am his parent, his carer and his protector.

But I couldn’t do it without so many people to buoy us up. To share the caring load. Because by sharing it, it makes it possible for all of us to care for him. It’s too much for any one person to do by themselves. I’ve tried that and I nearly broke in two.

So I want to use carer’s week to say thank you to his other carers.

To say thank you to Alex’s incredible school who look after him and nurture him and guide him to be as independent as he can, to enable him to experience new activities (tree climbing – really??), new people, whilst always keeping him safe.

To say thank you to the holiday playschemes who are all run by amazing people. Who recognise that our children – almost more than most – cannot stay in during the whole holiday. That they need to get out of the house, be surrounded by their peers, be supported in fun activities. Who give up their holidays to have what must be rewarding but exhausting days with our children.

To say thank you to Alex’s respite carers (and all those of you who have gone before). Who care for him and are genuinely fond of him. Who tell me how well he’s doing, how much he’s developing. Who allow us to recharge our lives for a couple of nights knowing he is safe.

And to everyone who has let me talk to them, just unload a little, thank you too. Because sometimes the sheer admin of his care – both on a day to day Alex level and navigating the minefield of The System – makes me want to cry.

To all of you – for letting me feel safe to share Alex with you – thank you.

By sharing him – sharing his care – we are still here, intact. Parenting and caring for both of them.


You can learn more about Carer’s Week here:

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Finding the time – and summoning the energy…

‘Was I just being a bit shit?’
‘Yeah, you were being a bit shit’.

This (perfectly good-natured) exchange occurred yesterday as a friend and I tried to work out how we hadn’t managed to meet up 3 years ago when he’d been in town. Or at least 30 minutes up the road.
3 years ago.
And prior to that I hadn’t seen him for, well, probably 10 years.
You’d think I’d have made the effort, right?

Prior to having Alex, I’d have agreed. Whilst never being known for being on time, I don’t think I’d been known for physically not turning up. I was always late, always tried to make time elastic, but I was there, roughly when I said I would be.

And I would make plans.

I loved to know what was coming down the track, who we’d be seeing and where we’d go.

And now… well, it’s a physical effort to put things in the diary. I just don’t know how all the moving parts of my family will be when the day comes around.

And the central cog is always my son.

Will Alex have slept enough – will he be in a good enough mood to be sociable?
Is the venue accessible?
Are we eating there? Is there as cafe or a restaurant? Do you reckon it’ll accommodate a wheelchair?
Will it be too noisy?
Will there be anywhere to change him?
Is it raining? If it’s raining and we’re supposed to be walking will it get muddy? Will the wheels get stuck? How to keep Alex dry? What to do with his wet things when he comes in from the dry?
How to even get the fucking wet things off?
Screw it, let’s not bother.

And so now when someone suggests something, my mind… well, it freezes.

I – me – I haven’t changed. I still love to see people, be part of a group, hear people’s news… just feel connected. I’m conscious of how much good it does me – the whole family – to get out there and do things in the real world. Not just our bubble.

But it is without doubt a monumental effort each time. And so I hate committing – pretty much right up until the last minute. I’m incredibly aware of how annoying this must be (sorry…).

And I understand that comprehending our life can be tricky because, well… how can you properly if you don’t live it? and that – ironically – just by seeing our family situation up close… people suddenly get it.
See the unpredictability.
Make allowances.

But in order to do that… I have to have been able to fit them into the diary first.
And not cancel…
And so the circle continues…
You see the conundrum.

So thank you to all of you for bearing with us and not dumping us as being a bit difficult.
For just taking my family as it is.
Not asking too many questions.
Just buying me an unnecessary glass of rose on a school night.

You need to know how much it’s appreciated.

Mummy, you are silly, who wouldn’t want to hang out with me?

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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.

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

… every little does genuinely help.

Thank you.

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!

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.

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:

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