That DDD study

‘I am writing with news that the genetic tests undertaken… for your child have identified a possible cause for the developmental difficulties…’

You’ve maybe noticed I’ve been quiet with the words of late. This is why. The moment the letter arrived with the hospital postmark… well, I knew what it was. I circled it warily, opened it, cried. Stopped blogging.

It’s so hard to explain the mix of emotions you feel when you receive the letter, read those words… Many of you will know we’ve been on the DDD study for two and a half years (not including the 6 months it sat on the shelf unopened. Sorry). That’s a long time. A long time to get used to the idea that maybe there isn’t an answer, that maybe those scary answers you thought it might horrifyingly be, well, it’s not them either. So he’s undiagnosed. That’s a badge we can live with. It seems to fit. I liked not being able to explain Alex sometimes, that he was just Alex. And now… well, here came that label. I wasn’t sure I wanted it.

They don’t tell you in the letter what it might be. You have to call. So I spent a day chasing my geneticist down, feeling like That Mum again, wanting – not wanting – our answers. They tell you over the phone, no waiting for a 3 week later appointment. Bam. Here it is.

So Alex has, though it hasn’t been utterly confirmed, but they’re pretty sure: Noonan’s Sydrome.

I had a small teenage moment when she told me this: it’s an awkward to say syndrome, and not nearly enough ‘z’s or science-y letters in it. Not very flash. I know. Inappropriate.

Wiki has a good page on it here: but, essentially, the key take aways for me were:
– it’s not progressive
– it’s not hereditary. It can be but, for us, it was ‘de novo’: a mutation.

My little boy is a mutation.

There the words of science and parenting clash.

But it means the chances of Emma carrying it are incredibly slim. I cried again when I heard this. Hadn’t realised how much it weighed on me. Emma. Having children. Just regular, normal ones. Like most people want. Like most people have without thinking.

It affects between 1 in a 1000 to 1 in 2500 children so is, compared to some diagnoses SWAN children have had, pretty common. I think what threw a swerve ball to our geneticist – why she didn’t test for it, why we could have avoided all this time in the middle – was his height. Around 80% of NS children are short and Alex is anything but. But, if you look at the physical features that we think of as ‘just Alex, part of him’, (heavy lidded eyes, slightly dropped ears…) he matches. And the blip in his DNA is consistent.

They can’t tell us much more right now, so I can’t tell you. It sort of explains why he is how he is… but not where he’s going next. There is a huge spectrum of Noonans and Alex, to us anyway, is at the extreme end because of his extreme developmental delay. Most people with Noonan’s have only mild learning disabilities. I think being diagnosed via DNA first is quite new, I suspect up until now the visual clues have come first. So whilst Alex is probably just a new variant there is a thought that something else not Noonan’s related may be going on too, so more tests are imminent. Just to be sure.

I dread going back into the hospital system.
I’ve enjoyed just having our life.
Puts brave face on.

And Alex? Just carries on being Alex. When the letter came through I insisted I was giving him more cuddles – more than before – though everyone said this wasn’t possible as this boy was hugged All the Time. It was as if I was reassuring myself. About what I don’t know. Maybe that it would be alright. Maybe that having a diagnosis would be ok. When we told Emma she burst into tears: ‘So Alex isn’t a Swan anymore?’ She too felt the drawing in of parameters, wondered if this meant he wouldn’t talk now. We reassured her that though everything had changed, nothing had really changed.

And it’s taken a while for me to write it down. To share our news quite so publicly. It took a while for me to get comfortable sharing it with people at all. To say, when people asked me about Alex, ‘Actually, we’ve just had a diagnosis’. I haven’t hidden it, just not shouted it, and I hope that’s ok, that you see where my head is at. Feel free to ask questions, even though I probably can’t answer them…!

And we stay in Swan, they don’t kick us out. Which is just amazing as without them, I’d have been bereft. They supported me without a diagnosis and they’ve supported me as I came to terms with something new.

Everything… and nothing. The world shifted a little. And then it didn’t. He is still our little boy. Still loved. Still challenging. But ours.

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Hey, Mummy, forget the diagnosis, come and play…!

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Dear Secret Teacher…

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

Yesterday’s had this somewhat emotive headline:

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

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

And my heart did that sinking thing.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

You can see the article here:

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

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Was that the post…?

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

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

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

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

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

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

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

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

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

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

But this form?

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

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

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

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

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

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

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

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When slow becomes… Too slow

We were always taught, or so I remember, that if we had something we needed help with we just needed to find the right person and they would fix our problem, answer our question… and I think it’s this, more than anything else, that leaves me feeling so: frustrated/ helpless/ powerless over our continued lack of respite.

It’s been five months now. Not that I’m counting.

Not I hasten to add that I’ve been idle. I’ve complained to anyone who will listen but… so many brick walls.

This is where social services got to: a great big document got produced which sets out extremely clearly why we need respite,that it’s quite urgent and really needs putting in place. Now. Everyone agrees it’s a necessity. Everyone agrees this is the safety valve our family needs.

No-one is able to provide it in a way that is satisfactory to all sides.

We’ve been very clear all along what our respite requirement is… For one night a fortnight we’d like Alex to go to someone else’s house to stay and to sleep. This provides us with a real and proper break on so many levels that I know I’ve written about before. It’s that chance to breathe out, to have 48 hours of not quite so intensive care commitments… to eat a meal without feeding someone else too… to listen properly to Emma. To sleep easily.

No-one in our county – or the two adjoining counties – seems able to provide this to us. Varying reasons are given – the biggest sticking point? You guessed it: the bed. Ironically (am I using that word correctly?) if we wanted more respite i.e. 3 nights a week, it would be less of a problem… but this is a big bed, and for one night a fortnight no-one wants it sat in their house. So we are trying to find more portable options. Beds that pop up, beds that fold down, fold away when not used…

The alternatives to what we would like (‘Here’s what we’d like you to focus on’) are: someone comes to our house to look after Alex whilst we are here or even they pay for us to go away whilst someone looks after Alex. I really really don’t want to sound ungrateful, but these aren’t options we can accept. This doesn’t work. Not for our house. Not for us as a family.

Practically it doesn’t work – making this a hollow promise – because we don’t have the bed, the hoists, the stairlifts they say we need for any trained carer to enter our home. The bed is coming, the rest? They came before Christmas with measuring tape but we’ve seen no-one since.

Holistically it doesn’t work either… because having another new person in my house is not respite. We’ll be listening out the whole time to see what they’re doing or if Alex is distressed. This is not relaxing.

It doesn’t work because what’s in this for Alex? Same house, just different person. He’s being ‘managed’. Our little boy loves people, he loves getting out. If we could he’d be having play dates and going to visit his grandparents – start gaining some independence. But he can’t – even though I know people would have him if they could. So he needs surrogate family – someone else with the equipment to take him on, love him, nurture him, show him a different side to the world. No-one should stay in their own home all the time, everyone likes to get out to explore. Alex is no different.

So we are at stalemate. We started a formal complaints procedure before Christmas. After two chaser calls to the man in charge of my case and no information forthcoming he told me this: This may take a while Mrs X but we do have Ofsted at the moment…

In something of a Monty Python-esque fashion I’ve actually complained about our complaint (I know…). In tandem with this I’ve petitioned both our county councillor and our MP. That felt a little feudal to be honest – going cap in hand to a man I know they’d listen to when they won’t listen to me. My MP is a lovely man and I know he’s already written to them on our behalf but when I told him our predicament he said he wasn’t really surprised as they’d failed Ofsted 3 times now and were in special measures.
What hope do I have?

Finally, I have to mention advocacy services. I’ve tried to find one to help me through this. They have all turned me down on the grounds of: he’s too young/ he’s not in care/ we don’t cover your area. This included the advocacy service that our council recommends. One woman said they couldn’t help as he’d never run away from home. At this point – I’m 7 refusals in at this point you understand – I laughed and said that was hardly fair as Alex couldn’t actually run. Physically did not know how to. We moved on… Pretended I’d never said it.

I’m used to all things Alex being slow. But this is beyond slow. Beyond the machinations of government being shwonky. This feels like: ‘We don’t know. And if we keep telling you that long enough, perhaps you’ll stop asking’. Once, when our Social Worker came to tell me – yet again – that they had no solution, he said (and I paraphrase here, but the gist is correct) ‘It’s almost a pity you had respite isn’t it? because now you know what you’re missing’. I can’t have him in my house any more. The last time he left I cried down the phone to my husband who was 40 miles away and just starting a new job. I can’t keep having that wall knocked down. So I’ve stopped communicating with them because I am tired. So emotionally tired.

I don’t know who else to ask. And – whilst risking sounding like a small child throwing her toys down in disgust – that doesn’t seem fair. Life’s not fair. I know that. I tell my children that. But this feels like being pushed to the brink. To unjust.

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Dear Social Services I am giving you my best cute face – my Mummy and I would like you to cut us a break. Whaddya reckon?

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All about a trolley

Full disclosure. I like going supermarket shopping.
There, it’s out.
There’s something about an unnaturally overlit store with shiny produce I didn’t know I needed that I just enjoy.

With children it altered the experience, but in a good way.

When we first had Emma, I don’t know about you, but just physically getting out of the house became an achievement in its own right. And around about that witching hour time of day (you know, that hour before you can reasonably have the ‘well deserved’ glass of wine) I found that a trip to the local Sainsbury’s was perfect. I’d truss her up in our front carrier, where she could be up with me and see all that was going on, I had my hands free and perfect strangers could have a quick coo and… we would enjoy it. I could chat to her, stroke her head and tell her all that was going on… and as she got older I’d pop her in the trolley seat to push her round. Our new games then became ‘How many items of shopping can I hand you and how long can you hold them in your hand before you drop it dismissively?’ and ‘Ooh, I wonder if you can unwrap that babybel before I’ve finished the rest of that shopping?’

I gained company – a shopping companion – and it became a Mummy/ Emma ritual. It felt weird when I went without her.

It also reminded me of going shopping with my own mother (*waves*). Things you did with your parents come back to you when you have children of your own don’t they? I remember standing on the trolley as she pushed it round and the Friday treat of what ready meal should we choose? (oh those heady days when we knew no better. I miss them).

With Alex it has been the same, although with added layers. I’ve always taken him, ever since he was little. He fitted in the bucket seat way longer than any child would do usually but he loved to lie there and I’d chat to him whilst he stared up at the lights. When, finally, it was time to admit he was really a long way over the limit for those seats we took the step of moving to the toddler seats. Anyone who saw me trying to get him into this would have laughed at the comical nature of my trying to feed his legs through the holes. With Gary or Emma with me it was fine but if I was on my own… half the time I managed it, half the time I had to ask a passing stranger to help me thread his legs through. They were always incredibly obliging.

As first he wasn’t actually sitting up so we’d prop him up with coats, scarves, magazines and as he wobbled his way round the shop I like to think it helped his core strength! It was just important that we were able to do it. How… Didn’t really matter.

Alex – as I’ve mentioned before – really unfurled after this time. He became engaged with the world. He would flap and chat his way around the shop and people responded to him. They smiled at his antics, the staff in the shop have got to know him and they come and say hello – and he has become acclimatised to people and noise. And once he worked out what his hands were for he’d happily – in the same way his sister did – take items from me, play with them for a while then drop it without warning on the floor. Ooh sorry Mummy *grins*.

Of course, he hasn’t stopped growing and we faced quite the quandary as he got bigger and heavier. We couldn’t keep using the toddler seat forever. The idea of not taking him, of not including him in this most basic social activity (we always, without fail, meet someone we know and they’re always so lovely to Alex)… it made me sad. It marked a moment in time where the world wasn’t keeping up with him. We could go without him, online shop or just do small shops, hang a bag off the back of his pushchair. All not ideal, all not inclusive.

Hello lovely Firefly chair.

I love it. I just love it.

It looks comfy, he’s secure whilst still maintaining freedom of movement and I can talk to Alex whilst we move round the shop as he is facing me and (here’s an unusual housewife-moment bonus) because the seat eats up a little trolley space I have to be a little circumspect about shopping. Or pack it as carefully as we used to layer our salads from Pizza Hut. Far more importantly… we get to keep doing those little ‘together’ things that don’t mean a lot individually, but add themselves up to a whole family life.

Thank you for helping us maintain that.

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Mummy, Mummy, you forgot to mention the yummy chewable straps on the seat too! What do you mean, ‘Ssssh?’

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Marking those achievements

It’s always the small things isn’t it? Within the world of additional needs we don’t call them milestones, rather they are inchstones. Blink and you’ll miss them in the way of every day normal, but to us… everything. Proof positive that there is progress that, however slow, we are moving forwards. We all fear stagnation, worse, regression so these are achievements to be marked.

Always a little nervous of saying ‘Look, he is here’, it’s also good for the soul to step back for a second, see how far you’ve come and Alex… he’s come on in strides, just in the time since I started this blog. Alex is sitting up, but he is also spinning around to reach things, to react to sounds (rustling of food wrappers are without doubt the best motivator) and, by a convoluted combination of lying down, swiveling around and sitting up again, he moves – quite stealth-like – across the floor. Objects I’d thought were safely out of reach… turn out to be fair game.

There is also proper babbling. New sounds keep appearing and proper little chat sentences are delightful to listen to. We nod, mirror them back, chat along and hope that, one day… these will be proper conversations. To hear Alex’s voice – to hear it properly coming through when there were times I thought we never would – I can’t get enough of it. What I hadn’t anticipated is that Emma really enjoys joining in too. She and her brother squeak sounds at each other, most times at the same time, sometimes it’s almost a proper chat, but either way. To see them interact. Quite the thing.

This may sounds like an odd one for the ‘yay!’ list but… we can tell him off. The more Alex is able to do things, the more room there is for mischief. And he knows it. He has what we call ‘cheeky face’. He looks at me, gives me the grin, and then keeps right on doing the thing you’d asked him not to. And so, finally, we feel able to admonish him, use the stern voice, just like we did with his sister, because – in however small a way – his comprehension is growing. That’s good for Emma, as I know sometimes she feels he gets special treatment and good for us – everyone gets treated the same, if only for a moment.

I know many of you follow One of her Facebook feeds a couple of weeks ago posed the question: You’re dying, what are your regrets? I had a brief moment of not being able to thing of anything substantive beyond the fact that I would truly, dearly, like to visit the Maldives when… I remembered Alex’s first months. I still find it hard to look back at his baby pictures. I can coo over Emma’s but Alex’s… they’re so wrapped in that raw pain of What is Happening? That my eyes slip over them softly, pretending they’re not in the room.

I sometimes feel as if… You know how we would talk about our pregnancies at the end? That the babies were cooked, ready to come out? Alex came out a little under-baked. He took longer to unfurl, to show us who he was. Now, my little boy is in the room and his personality – my funny, quirky, handful of challenges boy – is there for all to see. I look at the more recent pictures and they make me laugh – I remember where we were, who we were with and I can laugh at the memory.

That he is such a complex mix of disabilities is now such an intrinsic part of who he is. Emma sometimes asks me ‘Mummy, if Alex weren’t disabled do you think he would still [insert activity here]…’ And I can’t answer her. I tell her that we have come too far, that I can’t Sliding Doors him, because he is Alex.

He is the boy who reaches up his arms when I ask if he’d like to come with me? This is the boy who taps my arm if I don’t give him food fast enough. This is the boy who helps, as much as he can, with simple every day personal care tasks… who finds his sister hysterical, his father the best rough and tumbler ever… who indicates through every swift and happy movement that Life is a game to be played. This is who he is. And that’s ok with me. [It’s ok with Emma too, she just likes posing 8 year old’s questions].

That we can celebrate him – and keep on celebrating the small achievements – is huge. It’s a turnaround that we didn’t always think we would make. It is happiness. Which I think is an achievement too…

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Mummy you forgot to tell them my feet have grown!! Finally!! After more than a year! This is huuuuuuge! I have new shoes!

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Some festive cheer

Ah Christmas. I love the lights, the smell of winter and the Thank God We’re About to Stop-ness of it. The schools make it a very special time for both children. Christmas dinners, party hats, visits to Santa… and the Christmas production.

There is a Yiddish term: Kvell. It means, for the uninitiated, to be extraordinarily proud. It’s been a little appropriated as short term for overly gushy parents, but I’m about have a little parental kvell of my own… Sorry…

As an extremely grown up Year 4 (Somerset have a pyramid system for schooling so Emma is now – finally – one of the big kids. They transfer to middle school next year) Emma’s year group did a carol service in the local church. It was just beautiful. To see these children – most of whom we’d all known since their Reception days – stand up and sing with such gusto, such confidence. Small tears all round.

And Alex? Not to be outdone on any level, Alex had two productions. As he’s a split placement boy he got involved in each school’s show. We had many conversations with his mainstream school about this. We weren’t at all sure of his getting involved. He loves singing and he loves music so we knew he’d enjoy it but we didn’t want him to be the Disabled Kid on the end. Also, we remembered his nursery performance. It had been incredibly hard for us to watch him. When Alex is at home, he’s just Alex, but seeing him with other children his own age… it’s hard sometimes. At that performance I cried for a life a little bit lost as well as for being proud of Alex. We weren’t sure we could do that again.

But I’m so glad we did. He still was the disabled kid on the end (sighs… fire regulations – access to the ramp) but he was next to his peers. And maybe I’ve grown up too. There was my little boy – disabilities to the fore – and I was so proud… proud that he was there, proud that he enjoyed it and proud of my son. And so grateful to all the members of staff who made it happen.

But I have to tell you about the performance at his additional needs school too. I was nervous about this one but for different reasons – how was a production made up of 50 children with a variety of additional needs going to be? The show was A Christmas Carol and they had adapted it to work beautifully. There was a small amount of narration but otherwise there was singing, there was dancing and there was acting out the words. And there was a lot of call and repeat – the teacher would say the words and the children would shout it back – in time. It kept them engaged. Alex got to join in by being wheeled up to steal Scrooge’s money from his table whilst he slept. There was so much love and goodwill in that room. You really felt it. And Alex loved it, the whole thing, and you knew because he flapped his way through the entire production.
(‘Does that mean he’s happy?’, ‘Oh yes!’)

I love that Alex still accesses mainstream and I want that to continue for as long as it can. It’s good for him and it’s good for the other children too. I’m conscious that we’re pushing him out there a little, but any way he can go towards showing the next generation that disabled people aren’t to be feared, they’re just different… that’s got to be a good thing. Ultimately though, as his peers move on to more academia and less of the fun stuff, the additional needs school is where he’ll end up full time. And I’m so glad that this is a kind, nurturing environment that will help him thrive. That’s all most parents want for their children. It’s not a lot, but sometimes it feels like the world.

I am proud of these two for becoming the children that they are.



Mummmmeeeee stop it. You’re soooo embarrassing…

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