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 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!

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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.

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Mummmmeeeee stop it. You’re soooo embarrassing…

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I liked it how it was…

Would it be fair to say none of us like change?

I’m sure there must have been a time, an age, when I relished it, but now… now I like to know where my towel is.

There has been too much change of late. And I don’t like it. Over the past two months we have been buffeted by it from all angles and, to continue the metaphor, we are all at sea.

There has been a perfect storm of Alex starting school coupled with the loss of our respite added to a greater need for childcare.

When any child starts school there is a huge change in your life. I know this because we had Emma, so I know that half days are frustrating, there’s no way you can work that half term without considerable support and that they get tired and hysterical. Also, that school holidays are a nightmare for working parents. I get that. I am there. I am that muggle parent of one mainstream and one SN child.

It is – you’ll be unsurprised to hear – different with Alex. Whereas with Emma, there were solutions: playdates with friends to keep them occupied, childcare over the holidays can be provided by clubs/ playschemes and I’m-so-grateful-to-them grandparents and, worst case,could you just watch television for half an hour whilst Mummy writes this e-mail/ hangs out the washing/ attempts to cook some food? None of this applies to Alex. He doesn’t watch TV, we can’t do reciprocal playdates (even if he were invited I would have to go too) and noone, but noone, can look after him except for a trainer carer. Or us. Trained carers who want to do after school hours only? Are currently thin on the ground.

And then we lost our respite.
‘I’m sorry, we’ve had to terminate this placement as he’s no longer safe’.
Sorry?
Alex, little monkey that he is – little clever developing monkey that he is – has worked out that if he pulls up on something, he can go over that something. Great for development, not so great for the bed with 60cm sides at his respite carer’s house. That assessment for other options, a solution… came up with no option, no solution. And so there we were. Just hanging.

We are currently going through the mother of all assessments to get some different care in place. It’s hard sometimes for me to feel that I’ve expressed clearly enough to you all why we need this. It’s not a luxury. It’s a necessity. Without it… not great things. Alex is a lovely, delightful little boy and we want him in our lives, but he takes up so much headspace in terms of his right now needs and his next hour/ next day/ next week needs… that without a break from that. Just to stop. To exhale.

We all need a break from our children I think. And I think it makes us better people. We are not just parents we are also ‘who we were before they came along’ and I don’t think that’s something we should feel guilty about. It’s just that usually there are a lot of care options. We’re a bit more limited. And not knowing that window is there is a little suffocating.

So we have been invaded by social workers and social worker assistants, we have had phone calls with line managers all of whom have been understanding and are trying for us and… and, frankly, we are tired. Dealing with Alex related admin is, as any parent of a special needs child will tell you, a full time job – without holidays, or sick leave :-) Usually it is manageable but currently it feels relentless. And whilst I understand the process will hopefully give us the outcome we need… It is invasive. Family units are naturally private I think. Our doors? Wide opened.

And then. There is sleeping. Alex not only busted out of his respite carer’s bed but also the bed with the wonderful blow up sides that we had borrowed. So he is currently on a mattress on his floor with a sofa rammed up against the mattress on one side as that will keep him safe. But it’s not pretty. And not how I pictured my school-aged son’s bedroom. And not the easiest to pick our solid 20kg boy up from either.

We are viewing beds that will work for him. They are essentially giant cage cots. But it will keep him safe and we will sleep. Or sleep more than we do at the moment. And if we’re lucky this bed will arrive this side of Christmas.

I’m conscious this is a great big moany post. And I’m hoping you’ll allow me that indulgence. Chatting with a friend today we agreed there was nothing better than a good whinge. Just to get it out there. Normally – and probably tomorrow – we’re in a pretty positive place. Today, just for a moment, I needed to share the other side.

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Mummy, now that you’ve had a great fat whine, would you like some cake? That solves everything. Apart from wine. Definitely wine.

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Emma

Funny, extolling the virtues of Alex is ok, but talking about Emma feels different. She can talk for herself after all. I’m not boasting here, not saying she’s best daughter ever – we’re well aware of the foibles – but simply: here’s why we love her.

Emma. We – I – never talk about Emma.

She rocks our world.

When our lives were unravelling as we saw that Alex was not the baby we’d expected she kept us going.

She was my reason to get up in the morning when all I wanted to do was ignore this other part of my life, stay in denial, not go to yet another meeting with yet another medical professional who would say, yet again, ‘We don’t know. We can’t say. Now off you go…’

She made us stay connected to the real world. Just by existing. We had to get her to school, we had to get her to clubs, she needed feeding. If it had just been the two of us with Alex… I don’t know…

It was harder no doubt having Emma too because we had to keep her in mind… But because she needed normality, as much as we could give it, we stayed in it too. It gave us another focus.

No question, she must have changed because of Alex. All children change when they go from being ‘only’ to having siblings and so it’s hard to tell where the blurry line from ‘sibling’ to ‘sibling with disability’ lies. But whilst the focus is naturally always on the new baby, it would normally change as they grow up and, though Alex has grown up, that focus hasn’t shifted so much.

Emma was asked recently if she thought Alex had had a negative impact on her life, if she’d been prevented from doing anything… It was all I could do not to cry when she emphatically shook her head: no.

Our primary concern when we do anything is: how will this fit with Alex? As he gets bigger and doesn’t yet walk, as he gets bigger and doesn’t understand safety… it becomes more and more difficult to go away, to experience newness. So I am phenomenally grateful to our family and friends who work with us to make that happen for Emma. We can’t all of us get away, but at least – with their help – she can.

And Emma… Emma has dealt with this in very typical Emma style. She had a wobble, as we all did, but her school were amazing at helping us to help her… and she has grown into a thoughtful, funny, interesting little girl. She loves facts. Loves to *learn*. Loves space. Minecraft (*sigh*). Reading is a passion. She goes out to play with her friends. Her confidence is growing.

There is this added, disabled, side to her life but we like to think there are positives. She loves to go on the SWAN days out (she calls them ‘disabled days’), she’s recently started going to Young Carers where she can hang out with other children in similar situations, children who just ‘get it’ …when she came back from her first visit it was clear she’d enjoyed the evening (as well as the free pizza. ‘I don’t need tea before I go next time Mummy, there’s So Much Food!’).

We worried that picking Alex up from his new school would be difficult for her, we explained the other children had a variety of different disabilities – some like Alex, some not so much – ‘that’s ok Daddy, I know and I won’t stare’.

All parents are – rightly – proud of their children but we are so proud of Emma and the way she has taken this situation on and just rolls with it. I panic, occasionally, that one day she will resent her little brother but right now, the love they have for each other is a wonderful thing to witness.

Emma brings laughter and normal with a capital ‘N’ into our house. And we are grateful for it.

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Taking that next step

I meant to write this post some time ago.

In the planned ‘discounting emotion and general curveballs thrown at me by life’ world I’d hoped I’d write this in between the two life events of Finishing Nursery and Starting School.
But I didn’t.

Alex starting school, it turned out, was going to take me some time to process. In the mix were leaving somewhere safe and secure, starting somewhere new, different hours to contend with, an altered school run, less time with Emma (those afternoons after school before nursery ended – gone), and how on earth would I juggle working with school hours and (whisper it, deny them) school holidays. This was huge and I hadn’t clocked that at all.

However.

What this was supposed to be was a thankyou letter for nursery.

Thankyou.

For taking Alex in, unblinking, and working the challenge that he is and not seeing the problem that he could have been.

For including him: for wheeling him across the fields to visit the horses, pick the blackberries, join in with sports day (not at the same time, obviously).
For helping him join in.

To his friends for making him feel part of the club and accepting him for who he is.

For helping him develop – he joined nursery this timid little one year old, highly tactile defensive, super-sensitive to noise. He leaves a boisterous, inquisitive, confident little boy. I’m so proud of him and so grateful to you all for this.
And to all the amazing staff. How much you all supported him.

But especially, his key worker.

We couldn’t have wished for better. She loved – loves – him. You can tell. And so proud of his achievements. But takes no nonsense. And has stood with him every step of the way – getting him equipment, asking questions, pushed him on.
Been there for me.
Let me cry in the staff room when it all got too much. Helped me find solutions when I couldn’t see any myself. Made me realise I didn’t have to do this on my own. We – I – couldn’t have asked for more and we so hope to keep her in our life.

Thank you all. For loving him and preparing him for this next step. Because even if I wasn’t ready, Alex was.

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