Planning… always planning…

Small starts school in September.

It amazes me that he’s grown that much that here we are… on the brink of what I sometimes think is just ridiculous. He’ll be one of the babies of his year as he’s July born and, well, when Big started school she was ready – more than ready – to go. She’d outgrown nursery and all that it offered and wanted and needed to learn more, in a different setting.

If I could, I’d keep Small at nursery forever, with his wonderful, thoughtful carers.

I suspect this would be doing him a disservice.

Whilst Small cannot talk, he cannot walk, he cannot eat without assistance, the Small-ness of Small is coming through and there is much that he will benefit from at school. We had asked for a dual placement so that he can get all the benefits of an SN school with the socialisation of the mainstream school that is, quite literally, across the car park. It is also the school that Big attends and so for one year I get to fulfil my not very big dream – and yet one that every parents just assumes will happen – of my children being at the same school. Just as it should be, If only for some of the time.

His SN school has suggested a clever plan. That they create his very own, very individual timetable, that they place the very important things into the week – his two sessions of hydro, his one session of swimming, his physio, horse riding (horse riding!) and then ask the mainstream school to perhaps tailor their week so that the fun things we’d like Small to be included in – music, art, singing, hanging out with the other kids – could perhaps fall into the other parts of his week. I love them for thinking like that, and I think it would work. Small is never going to be academic, no university education for him, but he will enjoy and benefit from these activities and I’m so glad that these people, who barely know him, are thinking so intuitively about his needs.

… there is a part of me that has broken today. When Big started school we scoured ofsted reports, wanted to know about after school activities… we were excited for her. This Big Step. But today for Small we talked a lot about toileting, feeding, manual handling, hoists… So, quite reasonably – for his own safety and that of the staff – for a little moment he became a project, a logistic that needed solving which led my husband and I to wonder if it was time to move from SN buggy to wheelchair. This step that I am not ready for. I am not ready to sing ‘Disabled!’ as I take him to school. For all that he definitely is. For he is still my little boy. Who just needs pushing for longer than you’d expect.

And I still have to square that circle. That nothing we do with him can be spontaneous. It must be planned. Rigorously. So much more so than if he were ‘neuro typical’. And I have to remember to give myself a break after these meetings, these planning sessions, just to re-group, to re-orientate my brain almost because these are tiring and these are emotional conversations…

So school planning -‘Transition’- starts early. So by September, when he starts, the manual handling training will be done, the hoists will be in place, the evacuation plan will be written… all the stuff that is about my little boy, but is not my little boy, will be done… so we can concentrate on him enjoying school, benefiting from all those wonderful activities. And so I get to take that happy first day of school picture.

Just like every other parent.

On the wonderful-ness of imperfections

Nobody asks to have a disabled child. I can think of none of my contemporaries who would have sat down in their NCT class and said:
‘I’d like a child with disabilities please. I’d like to spend the first year in a state of total confusion, not knowing if they will see their first birthday. Moreover I’d like to spend all the times I’d usually have spent at baby group – discussing poo or lack of sleep – in a hospital near me, getting on first name terms with the A&E nurses. Lastly, as they grow up, I’d like to never really know if they will be able to walk or talk – I like a challenge’.

This is not what we ask for. This is not what we envision.

Society is afraid of imperfections. Our glances slide over the things, the people, we don’t wish to see, are somehow embarrassed of or embarrassed for. We fear the unknown. Would prefer to box it away in special schools and special homes. Out of sight so we are not reminded of our own frailties. But it is not so scary. There will always be imperfections, because they are what shines the light on all of us, and surely better to embrace them?

We say this with a knowing nod, we know it is a cliche, but I am a better person and my life is richer for having Small. He has taught me so much about myself and life that I would never have unearthed otherwise…

… I’ve stopped sweating so much of the small stuff. I’d be a liar to say that a messy house doesn’t bother me, or that I didn’t wish I had the energy to pick up the dropped food from the floor every single meal time. But I’ve learnt not to always do it, and that time spent with Small, just playing, cuddling, giggling, that’s what makes us both happy.

… We try to make the most of time. This isn’t as big as it sounds. We don’t do Great Big Symbolic gestures, huge presents, but we try and find a positive. Not every day, because some days are just so awful – so awful – that all I want is for them to end, but most days. What good thing happened recently? This did. Small kissed his Daddy. He asked him and he kissed him. Today was a more gallows humour moment over, should we get a stairlift, what a great way of conveying the laundry up the stairs it would be.

… I’ve stopped tolerating bureaucracy, being accepting of the easy option of It Will Do. I’ve started complaining. This most times revolves around Small, but who else will be his voice, his advocate? So I question more – why isn’t this in place? has this been thought about? who can help me do this thing? It’s wearing, but getting a result, moving a process forwards. Huzzah.

… I am more patient. Developmentally Small gets there in his own time and there’s only so much I can push him along. Getting grumpy that today he doesn’t want to practise the saving reflex over the peanut ball, that today he just wants to roll around giggling whilst I try and manhandle my slippery fish of a boy over it… that helps noone. So we stop, try something different. Or we go for a walk. Smell the fresh air. Give in a little to my little boy who’s just a boy. This also applies to simply getting out of the door. Small has so many ‘accompaniments’ that anything less than 10 minutes can’t be done. So there.

… I relish movement. Watching Small fighting against his body to turn around, reach a toy has made me appreciate my own body. The ease with which I can get dressed, walk up stairs, do up my buttons… it is a small miracle that I take notice of and am grateful for every day. And watching Big… I am not sad for Small, just happy and grateful for her ease of movement. Every day.

… I have met, and spoken to, the most wonderful group of parents that I would never have met but for Small. You all know who you are.

… I am always tired. But I think this may be just parenting.

If Small had been… not-Small, if he had been a’normal’ neuro-typical little chap my life would have been different. Less challenging maybe, less sad for sure and my back and knees in better shape. He has taught me a lot, this wise boy of mine and for that, and for the wide-eyed cheekiness that he has, for the blink-and-you’ll-miss-it wonder of his development, the motivation he now has to get that thing, THAT THING MUMMY!!!! I love him, and would have him no other way.

Working… with a disabled child

One woman stands up as the rest, 16 or so, remain seated, encouraging her to speak.
‘I’m a parent of a disabled child and… and… I’ve got a job too’.
As if a huge weight has been lifted from her shoulders, she sits down, grinning.

This, obviously, never happened, although if ‘Parents of Disabled Children who also have a job… Anonymous’ were to exist, I’d be right there, at the front, signing up.

There is an assumption amongst most people that having a disabled child must make you, the mother – for it is almost always the mother – a full-time carer. There’s that blurred line again – from mother, to carer. Mother has the lifeline mapped out – from totally dependent newborn all the way through, slowly, slowly to fully fledged independent adult. Carer tells you, immediately, that this is not going to happen.

There is guilt attached to being a working parent, and this somehow increases with a pre-school disabled child. Someone else is looking after your child for you in order for you to work. The guilt here is something that I had to work through. There is the overriding ‘will they look after him as well as I do?’ ‘If I’m not there for him every single day am I letting him down more?’ (because, at the bottom of my heart I will always feel like I let him down, just by his having been born as he is) ‘Will they understand him, love him, cherish him as much as I do?’ ‘How could they…?’ And because his needs are great, and his understanding is not, I worry, we all worry and yet… Small’s childcare provision is great. It is clear that his 1:1 loves him and with that I walk away each day safe and happy in the knowledge that he too will be happy.

‘Small goes to nursery….?’
‘Yes, yes he does. And whilst he’s there, I work.’

For many reasons, I have to work. For one, we need the money, plain and simple. For two, I love my job. I’ve had to re-arrange it since having Small. I no longer work 4 days a week, I do 2 and now that we’ve moved I work mainly from home. I can’t do the big projects anymore, I do the smaller ones, the ones that take more time and so need less days per week, but my hand is still in. I have not relinquished it.

But life with Small has not made this easy. You guessed it, there are hospital appointments, there are many therapists that both come to my house, that we also visit, who give us a program of work to be done. There are social workers to be talked to, school plans to be made… and every one of these needs an hour’s allocation at best. All during the working day. On top of this, there are people and equipment to be chased, new therapies to be researched. Nothing with disability is quick, everything takes time, and there is an innate assumption that this is ok. You’ve nothing better to do anyway.
‘I’m sorry, we can’t make that appointment, I’m working.’
‘…Oh.’

To top it off, the government, in its wisdom does not help the working parent. Does not help the working parent of a disabled child. I realise I’m late to this party but, as I blithely tried to up Small’s hours at nursery (by all of half a day a fortnight) I discovered that the additional funding he receives only funds his 1:1 15 hours per week. He does 30. The nursery had quietly been funding the other 15 out of its own pocket and had never told me. If they had not done this, I never would have got back to work. It’s that simple.

But they could not fund any more.
I could not, and cannot, believe the injustice of this.

I am not an expert on this subject by any stretch of the imagination but I’m pretty sure there are many many parents of disabled children who cannot get back to work because of this legislation. National say it’s a local issue, local say it’s national… but surely, surely this is a national issue? What is better for people’s state of mind, for their pockets and, ultimately for the tax coffers, than parents being helped back to work if they want to be? The alternative must surely be more expensive? a huge drain on those headline-grabbing benefits and a drop in self-esteem for those involved – with all that that brings. This cannot be cost-effective either fiscally or emotionally.

I will be forever grateful for Small’s nursery’s act of kindness.

The Special Educational Needs Code of Practise is currently being re-drafted. On page 46 you will see:
Local authorities must also secure sufficient childcare for working parents and must work with providers to plan and manage local provision to meet the needs of families and children in their area

I’m aware that this will be costly to implement and I wonder if it will make it to the final bill. I’d like to think that the long-term benefits will outweigh the short-term expense.
Am I being a little over-optimistic?

Two helping hands

I can’t be the only one who worries about posting about ‘achievements’.

These children of ours, the not neuro-typical ones, pull back from the norm in so many ways and Small has done this to me a couple of times now.
He’s doing this!
Oh, no, he’s stopped doing that now.
Bugger.

But I think also that all achievements are important, even if they turn out to go away again because, if only for a time, they are there. They are present.

So, watch as I get Small ready for his bath.

He is sitting on his changing mat, next to the bath, trying desperately to pat the bin because it is shiny. I am trying desperately not to let this happen because… well, because it’s a bin, and make a mental note to myself – again – to put it somewhere else. This does not happen.
‘OK, we need to take your top off now, are you ready? Jumper first’.
And I go to take his jumper off and… he puts his arms up for me to do this. He puts his arms up, he pulls them out at the right time and rights himself as it ricochets off his head. He does not fall back with the effort.
He does this again with his top and vest.
‘Well done, clever boy’.
Small looks at me, fleetingly, then taps his stomach gorilla style with both fists and claps.
I have no idea if this means well done me, but I like that it might, ‘Yes, well done you, you cheeky monkey’.

He is getting equally adept at putting clothes on. If I put his top over his head he will push his arms through.

I only really noticed how much he was helping when he got distracted one time – a label, a toy had caught his eye – and I was having to feed his arms through, rag-doll like instead.

Trousers are still beyond us though as he can’t stand independently. We do do it sometimes, just to try, and Small leans heavily on my shoulders as I wriggle his trousers down and he giggles at the oddness of it all. I think it’s important we attempt it, get him used to the idea, show him what’s next.

Again, again, it is the tiny forward-in-development accomplishments that make the most enormous difference to our lives. Every tiny achievement brings us that little bit closer to ‘ooh, that just got a bit easier, didn’t it?’

Ethans Escapades

Leaving the Smalls…

Ssh, listen, can you hear that? It’s the sound of plane tickets being booked.

Many many years ago my father, of Antipodean extraction, decided he’d had enough of the English weather and skipped off back to the country of his birth leaving my brother and I… a little bereft. I’m not sure Dad ever got it, why we felt we were being abandoned. But you’re grown up, his raised eyebrows seemed to say, you don’t really need me anymore. And the logical, 20-something side of my brain understood this, recognised this but still, you want your parents to be close, to be accessible in times of need – whether good or bad – and we lost this.

He has come back – he came for my brother’s wedding, again shortly after Big was born and again when she was 3. He has never met Small. We have visited too, but with young children for both of us, not to mention the huge expense of shipping a family of 4 by plane, and completely ignoring the fact that I am too absolutely-no-way scared to fly with Small, we haven’t seen him for 4 years. This is a long time. He’s now passed the 80 mark and, you know, ‘not getting any younger’. It’s time.

I am both exhilarated and scared out of my mind to the point of denial. This is not because I am frightened to fly. It is ‘freedom, adventure!’ versus ‘I am scared to leave my children’.

No. I am scared to leave Small.

He and I, we work in our little love bubble of two. It’s a funny world he and I inhabit, but it works and the other people in our lives, well, they fit into it, know their roles, but Small and I we are the lead actors. Our household broke into me and Small, OH and Big when Small when was born which I think is the usual order of things. When Small turned out to be… well, not what we’d anticipated, those teams never broke up.

I have never left him – either of them – for this long.

So, now, with enforced separation… I have to plan a childcare routine that will allow many, many things to happen. Big and Small still have to be got to school and nursery respectively. OH still needs to be able to work 5 days a week and these I think will be fine. But it’s the little things that I as me – mother, main carer, person-who-is-just-better-organised – do as a matter of course that now have to happen without me. Forms will need filling in, lunches will need making, clothes will need ironing… and so I am drafting in the big guns. Two lots of respite, two lots of parents will be on hand to help OH as he currently stands there trilling ‘La, la la’, with his fingers in his ears whenever I mention it.

Whilst I load up the Kindle and buy a new swimming costume. Well, it would be rude not to enjoy it a little, wouldn’t it?

466

Small is not a question to be answered

Nobody likes an information vacuum. And Small, with his un-diagnosis, is exactly that – a vacuum people feel the need to fill.

Over a period of ten days last month here are some scenese from our life:

Scene 1
We are on the school run – Big scooting on ahead with the boy from down the road, me pushing Small in his pram walking with the boy’s mum. I know her well enough to say hello to, pass the time of day with. We are not close. She is asking about Small and the results of tests we had done a while ago which had, once again, left us no further forward with answers. She asks these questions more than most people do, more than I encourage her to do, but, as we all do, I try to answer them.
But then:
‘Have they gone through his birth notes?’
‘Sorry?’
‘Have they looked back to see if this was something that had happened at birth?’
‘No, they’ve… no, it’s… we’re looking at genetic syndromes’.
‘It’s just, to me, this looks like something that happened at birth. Although, what do I know?’
And then she leaves me to tie her dog up outside the school gates and walk her son to class.

Scene 2
I am at the local playground with a new friend, her two children and Small. Small is in his pram, happily watching the other children and this woman is asking sensible, thought-out questions about Small after I’ve introduced the subject. She has even helped me get him into a swing. He loves a swing, but he’s a two-person job these days due to his dangly legs. We meet someone she has met at playgroup once, maybe twice. This woman clocks Alex in his pram, not out playing with the other children and comes over to him, takes his hand, makes baby noises to him. She does not say hello to me or ask Small’s name.
‘What’s the matter with him, is it Cerebral Palsy?’
I am dumbstruck. I take a short breath as if drowning, snatching for air. I do not want to offend her, or my new friend, but… ‘I’m sorry, have we met…?’

Scene 3
An e-mail arrives from a relative. It is 10.30 at night. At the end of it he asks, ‘Have you thought of William’s Syndrome?’
It is all I can do not to Google it. Which in the end I do the next day. It does not sound like Small. This relative has promised never, ever to do this again.

Each time someone does this, it ever-so-slightly rocks my foundations. Nudges the world I have built for me and Small and his symptoms with no name. I have to go right back to the start, convince myself that we have looked everywhere for answers, asked the right questions, made the right people delve into his very make-up for clues. We have done all we can.

These remarks are never taken lightly as on some small level we’d all like a diagnosis, a path, for our children… and I would just ask that people take a moment and ask themselves who they are trying to help when these verbal hand grenades are thrown, so very casually, out into the air.

#breakingpoint

This is a very specific blog for a very specific campaign.

Mencap are currently running a campaign to highlight the need for, and the immense benefits of, respite, or as it’s being re-named, short breaks. I have issue with the term ‘short breaks’ as it makes it sound like some kind of Bridget Jones-esque mini-break in a two seater car, which it isn’t, but I understand the need for a re-brand. Respite is defined as: ‘a short period of rest or relief from something difficult or unpleasant’ which makes it sound like a negative. Short breaks sounds a lot more positive although, I suspect, many of us don’t have the energy for the fun-sounding nature of Ooh, a break? and just, you know, catch up on the washing and some sleep. But it is true to say it is beneficial for both parties – both the carer and the care-ee. The carer gets that much needed time for themselves, the care-ee gets to spend time with someone different, somewhere different, and who doesn’t benefit from that?

Our #breakingpoint came last Easter. I’d thought we were doing fine, me, OH, Big and Small until my brother and his family came to stay. It’s true to say that it’s not the big things that break us, it’s the little things. Mine? Well, it was steps. We all went to visit a stately home nearby which was all but inaccessible to Small in his adapted buggy. There were steps to the house and there were steps in the garden which meant the part which we could get him – and us – into was pitifully small. And as I watched my brother take Big – but not me, or the rest of my family – into the house to look around I saw the rest of my life playing out. It wasn’t the big things that I wouldn’t get to do (planes, foreign travel, museums) it was the tiny every-day things that you expect to do as a family: to get down a cobbled street, up some steps or stride up a hill… that made my world implode. I suddenly saw how restricted my life was to become. This was not, and had never, been in the plan.

I cried for the next 3 days. My husband, for the first time I think, saw how things had become. We talked for the first time about how bad life had become, how we had allowed it to affect us, and Big, and could see no way out. We wanted someone to take our problem away. That problem was Small.
When I dropped Small at nursery I burst into tears all over his lovely key worker. She made me a cup of tea and let me do crying. She called our Social Worker. Critically someone offered to take Small home that night, to just give us that break. I will be eternally grateful for this one act of kindness.

Our Social Worker came out the next day and I cried over him too as we explained that our marriage, and therefore our entire family, had hit rock bottom and if they could not help us, well, we were in trouble. To their credit they helped, and they helped swiftly. We now have respite once a fortnight. I cannot over-emphasise the difference this has made to our lives. We are now able to climb steps, walk up hills, go down those cobbled inaccessible streets whilst Small goes to the park, feeds the ducks and is – wonderfully – looked after by someone else for a few hours every other week. Life slows down, Big gets some undivided attention and the washing gets done. Sometimes I go out for a coffee with a friend. I get my hair done. None of these are big things.

I have stopped crying.

And this, surely, has to be better, more inexpensive than taking children away from their families who cannot cope? Or denying that help or intervention is needed? We love these children. We love them fiercely, but they are hard work. Every person needs a break and where usually there are friends, grandparents who can provide this for us, these children are a little more challenging, harder to accommodate. This is the gap the government, our local councils, have to fill. Because the alternatives… are unpalatable and unnecessary. Social care is always an easy target in the budgets; it affects vulnerable people who don’t have the time or the energy to fight back. I’d like to think this is not the #bigsociety Dave had in mind.

http://www.mencap.org.uk/campaigns/take-action/breaking-point

When Small gets ill

Small is ill.

It’s nothing huge. He has tonsilitis and a cold on top of that. He streams snot as he has a cold. He streams dribble as he just can’t swallow very well – his throat hurts we think. After he’s been sat up for more than 40 minutes I have to change his top as it’s sodden. Every time I pick him up for a cuddle I have to change my top because, well… yuck. Thank goodness for our washer/dryer.

So far, so normal for a 3 year old you think.

But there is something else. Some tiny panic that I don’t recall having with Big.

Every time Small gets sick, a little piece of me worries he will die.

I have no reason to think this. He’s a very healthy boy, and it’s been a long time since he’s been hospitalised. That sick feeling I had? I remember that vividly. I remember the ambulance journey we took because the febrile convulsion he’d had had paniced the life out of us and made us call 999 but this was over a year ago.
These feelings stay ingrained and every time Small gets ill, and after I’ve checked Calpol stocks, I mentally run through:
Where’s the suitcase?
Is my phone charged?
Is there childcare cover for Big?

I do this because… because he is not a normal 3 year old. Because he cannot tell me where it hurts, I can only guess. Because I am never so sure it is ‘just’ anything. Just maybe, just perhaps, this is a manifestation of his swan-ness, of this syndrome he has, that is so rare noone knows what it is, maybe this will trigger something bad.

I’m sure also this is wrapped up in how much my fierce love for Small has grown. At the start of our journey with Small, when we first discovered all was not well and every single day was black, there were many days I would wake up hoping he had died, because surely that would be better for all of us? But now, now the thought of it catches my breath in my throat with the awfulness of it, the sheer panic it induces is overwhelming. And so…

And so you are right, I’m almost certainly being ridiculous, being that over-worrying mother. Yet every time this happens. Every time I have to check myself.

calpol

Two Christmas Plays

I say Christmas, as they weren’t nativities. Both my children had their end of term Christmas plays last week, and though both go to C of E schools, neither really went the whole hog for the nativity. For me, as a non-believer (sorry), this was a good thing, but it amused me nonetheless. Big’s was undoubtedly the Christmas story, but focussed on the three kings (one of whom had a birthday the same day as a new baby – guess who?) and Small’s… Small’s was an inspired story of Little Red Riding Hood, Snow White and Cinderella all going off to visit Red Riding Hood’s Granny, but being ambushed by no less than 10 break-dancing wolves (there were a lot of children needing a part), but who were saved by Granny and all her mates scooting back from bingo (picture 8 five-year-olds scooting into the hall – brilliant).

There is a Yiddish term, ‘kvell’. To those of you who don’t know it, it means to be ‘extraordinarily proud’. This is how I felt about my children last week, for very different reasons. For Big, my beautiful eldest girl, I was so proud that she had been given the lead part. We aren’t supposed to say this are we? we are supposed to self-deprecate these achievements, to say, ‘oh, well, it was probably her turn’, but oh, I was so pleased when she told me. She loves being on stage, she exudes confidence that smoothes that gap if she misses a cue, and you can tell she’s enjoying it. She had a blast that night and I was so happy to watch it, to say ‘yes, she was good wasn’t she? although your son was very good too…’ Deprecate, deflect…

And little Small. I was so proud he was able to turn up. For any other person, with any other child, you’d think that was a little harsh, but I hope you understand why I say this. At no point did anyone say it would be too loud or complicated for him, noone said it would be awkward, or that he wouldn’t last 45 minutes. He was included. All the nursery children played stars and they sat, or stood, at the front, opening and closing their hands on cue and, at one stage, walked up and sat on the stage. And Small was there too. Sometimes he didn’t sit, sometimes he threw himself back to Pam who was always there to catch him, soothe him, help him feel happy enough to sit up again. Sometimes the little boy next to him handed him a toy. Small didn’t stand the whole way through the song, he got bored half way through and sat down. But, He Stood. He stood well supported, but that boy stood. I’ll say it once more. He stood. He bore weight on those feet next to the other children and I cried. And when they walked to the stage, Small – heavily, heavily supported under the arms – walked those few steps to the stairs as well (and was then hoiked up – stairs are a way off just yet).

Without doubt my boy is disabled, and this is thrown up so much more when he is surrounded by neuro-typical kids who know the words, know the actions and wave to their parents. But Small was actively included, able to participate and I think enjoyed the experience. And I popped with pride seeing him do something every child should do – a rite of passage if you will – his Christmas play.

theatre