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.

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

So much more than What you see…

It’s hard to encapsulate Alex in a few words. In a nutshell, to try to sum him up, I might say, ‘Well, he doesn’t walk and he doesn’t talk and…um, he needs help with pretty much everything.’ And that person might go away thinking that Alex can’t do anything, is just a bundle of boy, unresponsive, in our house.

Which would be wrong.

If I had ten minutes I would go on to say…
‘But, hang on, here are all the things he can do!’

He knows it’s me when I go into him in the morning – he sits up, makes happy sounds and is desperate for a cuddle to say ‘hello, it’s good to see you’.

Alex gives the most amazing hugs.

He helps with getting dressed – knows when to put his arms in his sleeves, anticipates clothing going onto or off his head and, so much more excitingly for me, when we undress him he not only pulls one arm out of a sleeve but knows to use that hand to pull the sleeve off the other arm. Honestly, I nearly cried when I saw he’d understood that.

He helps with nappy changing too. He’ll pop his bottom up right when we need him to which just makes the process so much easier. And quicker.

Up go his arms in response to ‘Do you want to come up?’

He knows the sound of rustling probably means food. He’ll stop what he’s doing, turn his head and try and find the source of the noise. Then he’ll look at us, hopefully… Mummy, Daddy, Emma – what have you got…? (and where is mine??)

When he’s sat at the table and someone comes in the front door: he hears. And he cranes right around to see who it is.

He looks for the buttons on a push button book. Uses all his might to push them down, hear that noise.

When his school take him swimming they tell me he’s progressed from hanging on to his teacher for dear life, to floating with a buoyancy waistcoat and now, just hangs on to a woggle. All casual. He’s relaxed enough that that’s all he needs. He knows he’s safe.

He remembers that certain people we know always have watches, or bracelets, on their wrists. And he looks for them each time we meet. Searching for the shine.

His supported walking is amazing. You can feel, when you walk with him, how little he needs you there. How much you are simply a security blanket.

He will not stop talking! Not ‘proper’ talking… but his babbling sounds – which are grouping together nicely – are there. Every day. Shouted quite loudly over our conversation sometimes. In an ‘Oy, what about me?’ kind of a way.

Cake is one of his favourite foods.

Egg is not.

He clocks that we’re going outside when his coat goes on and once we’re there… he’ll flap his arms to tell us – and the world – how happy he is to be out. Blown by the wind. Feeling the sunshine.

He can blow the best raspberry’s I’ve ever heard.

He makes the most complicated clicking noises with his tongue that the rest of us cannot replicate.

He loves – loves! – a bath.

He’s sociable. Enjoys a crowd. Loves the noise, the light.

His smile, his infectious laugh… Make everyone else smile too.

Strangers smile at him. With him. All the time.

My boy is so much more than the sum of his parts.

It just takes me longer to tell you.

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Mummy, that’s quite enough [blushes] but check out my walking!!

A very tentative exhale…

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

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

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

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

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

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

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

But because… dear God we forgot.

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

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

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

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

Dear David

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

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

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

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

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

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

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

I look forward to your response.

Yours sincerely,

Helen (Alex’s mum)

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

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

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: https://en.wikipedia.org/wiki/Noonan_syndrome 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…!

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:

http://www.theguardian.com/teacher-network/2015/may/23/secret-teacher-support-inclusion-but-not-at-any-cost?CMP=fb_gu

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

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 http://momastery.com/. 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!