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.


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

This is the house that…

Well, we haven’t got yet.

As Alex grows up… and gets bigger and taller and heavier… and we get older, frailer, tireder… there will come that point where… well, he will have to move out. And at that point I don’t want us to feel that we’ve failed.

Every child is supposed to move out, right? As parents you quietly help your children to gain their independence: using a spoon properly, getting yourself dressed, walking to school, managing your homework timetable, knowing how to cook a spaghetti bolognese… Emma is at homework timetable. Alex? Well, we’re still working on the spoon. And that’s ok. Because that’s where his trajectory has taken him so far. But, being realistic, he’s always going to need 24 hour care on hand. He’ll need 1 to 1, sometimes 2 to 1 support to really interact with the world. And I want to know he’ll have that. Not just from us, but from everyone who is there to take care of him. To look after him. To nurture him. Because we won’t always be here. And it just can’t all fall on Emma.

One evening, as we were talking about something quite inconsequential she blindsided me with:
Mummy, who will look after Alex when you die?

Adult care frightens me.

It frightens me even though I want to believe in the system. That it will be there for him. But all I see are successive governments who really don’t seem to want to look after their most vulnerable, who seem to feel it’s really not their responsibility and that these people can somehow support themselves… and councils who, with budgets cut, are having to make impossible choices between fixing pot holes and providing care for those in the community who need it most. It doesn’t fill me with hope.

So a friend and I had a thought. What if we created our own source of care?

Over 20 years ago, not far from us, some other parents felt the same. They wanted a home, not an institution, for their children to live in. To be as independent as they could whilst being safe.

We visited to see what they had achieved.

I was nervous. Because it was like looking into the future, and I wasn’t sure I was ready. At 5, 6 years old Alex is still such a little boy and part of me wondered if I was getting ahead of myself. But… I like to plan, it gives me a sense of calm.

And here, in lovely grounds, with plenty of space, was one large residential unit – converted from an old hotel – with smaller custom-built houses off to the side for those who were more independent. It wasn’t perfect, but it felt friendly, the staff seemed genuine and those who lived there seemed engaged. Happy. Not sad. Not rocking in a corner smelling of wee. You know?

And their staff turnover average is 8 years. That’s amazing for care homes.

What we’d like to do is slightly different. Our children need more care than those we met did. Their home would need to be more custom built to meet their needs. They’d need safe beds, secure rooms, access to a hydrotherapy pool, a sensory room, safe spaces to play and explore as they got older. Well paid carers who would help them grow and change – still get them outside into the fresh air where they all love to be. To remind the town that all sorts of people, with all sorts of needs, live here.

There are different ideas as to how this could be achieved, whether we convert a current space or buy some land and build our own. This kind of facility is lacking in the town where we live. It’s the kind of town that I think would embrace this idea. It’s a forward thinking town that really tries to look after its own. I can’t think of a more positive place to try this.

We have time, and I hope we’ll find people who will be able to help us. We’ve never done something like this before, we only know it must be possible.

Really Mummy, my own real proper home, for me and my friends? No more listening to Taylor Swift on heavy repeat? I’m in!


The day is full of sunshine. It is warm.

Our car is full. Full mainly with Alex’s stuff… huge bed… wheelchair… 3 wheeler… seat to strap him into when we go out… and in among that is crammed everything else. Again the annual ‘really need a new car’ conversation.

We navigate driving on the wrong side of the road.

A favourite song comes on and we have our perfect soundtrack. And I think Ooh, is this a Moment? And it is.


Then Alex starts to cry… he is tired. And probably bored. We are all tired and bored but he is always the one who makes himself known. Emma – because she is a beautiful person – starts to read him a story. He stops briefly then, realising he’s been had, that the car is not stopping any time soon, starts up again.

Our summer holiday.


The days are incredibly hot – 35 degrees hot, too hot for our English sensibility, and so we adopt the siesta. Well, 3 of us do, Emma just stays up watching TV as the rest of us doze but, as a result…

We are able to go out – as a family – and eat dinner. Eating at 8, 9 o’clock at home is unthinkable but here… it is normal. Alex, having slept, is energized. We giggle with the headiness of it.

Drink wine.

There is a swimming pool, and another pool and another – both inside and out. There is a whirlpool connecting the two. We find Alex a life jacket, look at each other nervously and… our family is pulled along… Alex, ever the water baby, just squeals, splashes delightedly.

There is a smaller pool where the wave machine makes the water lap at the edge. It’s shallow enough to sit down. Alex sits there, determinedly splashing. Emma, ever practical, dons goggles, splashes him back. An exclusion zone is – effectively – established… But Alex is older now, and I think it’s clearer that he’s not like the other kids so… the adults smile, they don’t mind and the children, they get it, and just work around him.

On sight seeing visits we come across accessibility everywhere we go… an old abbey has specially installed ramps that means there’s almost nowhere we can’t go… a chateau has a special avoid-the-steps disabled access door, complete with it’s own pull bell… In many restaurants waiters move chairs without being asked so Alex in his wheelchair comes up to the table… we are truly different, yet the same, and so we can all join in… do the same thing together. We are a family.

My constant fear is that this is the last year our holidays together will work… and so we take a trip via Euro Disney. I cannot say enough good things. We all loved it. There were enough scary rides for Emma, enough gentle rides for me and enough noise, lights, people for Alex that everyone, everyone enjoyed it.

And we met Spiderman.

There were not so good moments too, just so you know…

We take Alex on It’s a Smalls World – it’s a wheelchair accessible boat journey, what can go wrong? Alex – with his previously mentioned love of water – Has to Feel the Water. Longest 10 minutes of my life preventing him from getting out of the boat. Never again. After that, no more rides for him. Spectator only.

We are in a restaurant and the table we’ve been offered will not work for us, for Alex. It is tucked away in a corner, it is right up against a couple having a nice meal for two… Can we please have another table? This causes consternation, it will ruin their tables per waiter rota and as we stand there awkwardly waiting, waiting for the manager to come and be the voice of reason (and she is), Emma – who is in desperate need of food – bursts into tears, wants to know why we can’t just have One Normal Meal. She is right, we agree, and we talk about it. We know it’s difficult sometimes, but if we don’t try these things, we’ll never leave the house.

Another night, Alex and his Dad go home early and Emma and I… we have pudding… just the two of us. Quiet as you please.

This was a proper family holiday. Maybe because Alex is more mobile… he’s able to be much more a part of it… less passive… and whilst that can be… challenging… having to be properly thinking about the needs of both our children… well, that was good.


Mummy, can we go back, I liked it there – there were croissants…

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??

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:

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?

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…?