A walk home with Big

On Fridays I don’t work and Small is at nursery so I get to pick up Big from school and walk home with her. Just us two. It’s only 15 minutes, but I just like it. The Us of it.

There is another whole post for this topic, but, for now, it’s enough to say that some quite wonderful people in our town are organising a fundraising event for Small which quite blows me away in its generosity. I’m starting to talk to more people about this so I feel it’s about time to tell Big.

‘Big?’
‘Yes Mummy?’
‘I just wanted you to know that some very lovely people organise a fundraising event every year and next year they want to give the money to Small, isn’t that nice? It means we can buy him a trike so that when you go on your bike, instead of him being stuck in his pram, he can cycle with you.’
Pause. I turn to look at Big and see she’s having a think.
‘Are you ok?’
‘Yes’.
‘Are you thinking?’
‘Yes’.
‘What are you thunking?’
‘I was thinking that there used to be a time when I would wish that Small wasn’t disabled. I’d look at him and wish he was just like everybody else. But now, I like that he’s disabled. I just like Small how he is. I love him’.
‘We all love him. Just like he is.’
‘Yes, although Mummy I think really I’d rather scoot than cycle with him…?’
‘OK’.

Aylesbury Vale-20120725-00378

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A little piece of ‘normal’

We went away as a family this weekend. This, to most people I know, would not have been a big deal, but for us, with Small, it was huge. Paramount in our heads was WILL HE SLEEP? But it was also: will he cope with new surroundings and all those shouting children all the way down to…. have you brought his cups, his booster chair and enough warm clothes? For Small, with his inability to move about, gets chilly when we go for those bracing winter walks. Big, within 10 minutes of running around tells me she’s hot, hands me her carefully-thought-through-by-me layers and disappears. Small loves being outside, but his nose goes red, his feet and hands go cold so he needs careful watching.

This weekend is something that we have done every year for as long as I can remember. First we went in couples, just the 10 of us, then slowly, slowly, children appeared until as of two years ago we all had 2 a pair. 20 people descend every year on some unsuspecting holiday rental. Until we had Small, it was always an unequivocal yes, but then, well, a little more trepidation. Not just the above, but also how will we cope with other people asking questions, with the children wanting information on this little boy, who is not a baby, but acts like one, with the adults voicing more guarded, more searching, more sympathetic thoughts.

We talk a lot about our Bubble. The world we inhabit where we know just where everything is if we need it, just where we can go if things bcome too stressful. It is, if you like, our safe place. But goodness, we have to break out of it sometimes.

We had the best two days. Big was in her element, running around with 8 other kids, round the house, round the park, in the cafe. She has her own little mate in that group, a boy a year younger. There is a post for Big, all in her own right, coming… but Big is not a girlie girl and sometimes she finds it hard to find a level with her girl friends at school who do still like fairies, and with the boys who won’t always play with her because she’s a girl… but this little boy and her bonded. They swapped facts on Harry Potter and space and dinosaurs… they were inseperable. And Small, he had a blast. New children to watch, new toys to play with and all these grown ups who wanted to make him laugh! And we… we relaxed because our children were happy and these friends who had known us since before Small just accept him.

Small slept and with that came two days of talking very little about disability but just chat, about people’s lives, and where we’d been on holiday and how we were all arranging Christmas. And we ate good food and drank good wine and OH and I remembered that we have to push ourselves – push ourselves out of the house, into different environments, with different people because otherwise there’s the danger that we’ll forget how life is outside our Bubble. And I can’t think of anything more debilitating for our whole family than that.

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All change… again…

I don’t know if I have always hated change. I like to think that in my younger, more carefree days, I was open to doing things on a whim, dropping everything at the sound of something fun, looking forward to something different…. I’m not sure though.

I do know that having had Big, and certainly since having Small, OH and I have revelled, thrived on routine. We like to know what’s happening, and on what day, well in advance of its advent. Woe betide any – any – new thing that rears its head.

And yet change is coming. I see it coming, I have time to plan for it, yet I cannot look it in the eye.

Respite.

I love our current set up. Every other Sunday Small goes off – bag packed, buggy folded – to stay overnight with his carer. Here is what I like about her:
– She is lovely
– Her family is lovely and they are clearly very fond of Small. Her two boys are older and Small adores them.
– They do such nice things together. They go swimming, or to feed the ducks, see the animals in the nature park. Sometimes, they visit her mum, who is local, and she has a dog. Small loves dogs. He thinks they’re hilarious.
– We know her.

But Small, pulling to sitting though he is, still has to be carried about from place to place, and weighing in at 17kg of boy, he’s not exactly light. As his parents, we are happy to carry him, happy to risk our backs, our knees, our ankles as we are just not ready to allow hoists into our house. We hope (and hope is something we haven’t allowed ourselves to do for a long long time) that in a year or so he will weight bear enough to transfer himself from bed to chair to car. But we cannot ask someone else to do this, to risk their health for our boy, and Pam has always been clear that she doesn’t want equipment in her house.

So back to Social Services we go. They have found someone who they think will be able to look after Small, although she is half an hour away. Half an hour – down country roads. She will have the right equipment in her house, her car can accommodate Small’s new buggy. I am meeting her this week. And good God the mess of emotions. Will I like her? Will she be right for Small? What will they do together? Will she love him, take good care of him, comfort him when he cries? Will he be ok sleeping here, in this house, without anyone he knows? Am I allowed to say no, this person is not right?

This ought to be a positive. We are hopefully finding someone with whom we can build a relationship for a long time. Someone who will be able to provide our much-needed respite for years to come, without the need for change again. But we fear change, especially in relation to our children, and this is the biggest change we have had to face so far.

A particular anniversary

It’s this time last year that we moved house. We moved from our rental home that had served us well to our house that we had bought, renovated (goodness, still renovating…) and were desperate to get into, to start making a life. So it’s also about a year since we submitted our saliva pods for the DDD study. I know this because…

Well, to go back to the beginning…

When we realised that Small wasn’t developing as he should be we – like every other set of parents before us – ran the gamut of testing available to try to find out what was going on. There was an MRI (my tiny, tiny boy in that big machine), blood tests (he shouted his way through these) and lumber punctures (didn’t like these either). Not to mention much prodding and discussion by a variety of consultants all of whom, without exception, need to learn a better way of saying: ‘Sorry, we don’t know what it is, but we think you’re stuck with this situation for life’. At the end of these appointments is Genetics, the last-chance-saloon of answers. We duly got more blood out of our little boy but still nothing. At this stage, DDD was mentioned. It stands for Deciphering Developmental Disorders and is, in essence, an in depth study of the DNA of children like Small, to try to find answers. We agreed to join without hesitation.

However, when the test arrived – it’s one you do at home by spitting into a tube – we looked at it sideways, our eyes sort of slid over it as if it wasn’t there and, as if by magic, it ended up on the top most shelf in the lounge. Staring at us. We could not do it. Somehow by the three of us submitting our samples it was turning Small into a project and making the whole surreal, never-imagined situation – testing for a Thing – very real.

It was moving house that gave us the impetus to complete it. The thought of taking this package to our new house, unfeterred by those awful early months’ memories, was worse than finally just getting on and doing it. As it turned out, not so tough. OH decided to make it a competition (who could fill their spit tube quickest…) and Small co-operated wonderfully. Off it went in the post. Shazamm, out of my life. We won’t talk about it, it Never Happened.

But occasionally I am side-swiped by it as I see other people wishing for results or receiving them and being assaulted by all sorts of new or buried emotions and I wonder if we really want a diagnosis at all? I know it would be useful for box ticking, a handy short cut to answer ‘What’s his condition?’ and give us that prognosis that would, no question, make life more plan-able, not to mention help future parents but, in a funny sort of way, I quite like that Small is an anomaly. I like that he can surprise us, I like that there are no boundaries, no expectations. So although I am now wondering if our call will come, I don’t mind if there isn’t an answer.

What’s his condition? Small has…. Well, Small has ‘Small’. Where’s the box for that?

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I’m outside, on a boat? Brilliant.

More information on the DDD study is here: http://www.ddduk.org/intro.html

New tricks

Small has been sneaking a new trick for a couple of weeks. You know the ones? You see it coming, but you’re not sure it will ever, actually, happen? He has been trying, and trying to sit up by himself. He would, as he’s been shown, put down one hand on one side and push himself up whilst flailing with his other limbs to try and tip himself… enough… to get to sitting… and as he would try we would all be cheering from the sidelines, ‘Come on, you can do it, come on!’… and then he’d fall back down again, grinning, knowing we’d all been watching little Small, centre of attention. Big would desperately jump in to help, push his elbow, grab his hand and we’d have to say No, he has to learn to do this by himself, just as we don’t always want to help you with, say, cutting up your food? as we can’t come with you to restaurants when you’re older to do it can we? (Cue: blank look of incomprehension about future life).

Then one day, when I went to pick him up from his lovely lovely nursery, his key worker asks if he’s been sitting up this weekend? No…..? And she turns to Small and says, let’s show Mummy. And she lay him down ever so gently and asked him to sit up. And he put one hand down on the floor to push himself up, grabbed his trouser leg with the other hand and he pushed, and pulled, and pushed and pulled and… ha ha Mummy, look! Small was sat up. All by himself.

And this is now all he wants to do. And by doing it, he does, weirdly, move himself across the floor. I will put him down sat up, he will play for a while and then very carefully lower himself back down to the floor where he will do his favourite playing: flapping every single part of his body. No physio here Mummy, just pure loving moving me. Then he will roll, play with a toy and then he will sit himself up and so, like his sister before him, he will move across the floor not unlike the knight in a game of chess. You can tell he gets a lot of enjoyment from – finally – a little independent movement and, what I love, is that now he will sit himself up and look expectantly round as he gives himself a round of applause – as we have done all too often to him, to show how well he is doing. And every every time, we join in.

Hand

Ethans Escapades

About that equipment

When Big grew out of her Stage 1 carseat (you remember, the rear-facing one that you were forever stopping the car and running round to make sure she wasn’t dead – no? Ssh then or you’ll wake her!) we went to Mothercare and bought her a nice forward facing one. When she grew out of that one, we went to Halfords and bought the cheapest booster seat we could find. Job done.

When Small started to grow out of the Stage 2 seat we suspected the next one wasn’t going to come from Halfords. He can’t go into a booster as, although his muscles are growing stronger every day, we can’t trust him to sit up unsupported as at any minute he might decide it would be much more fun to lie sideways, or lean his head on the window. Funny? Yes. Safe? No…

So my first port of call was my lovely OT. Car seats…? I asked, tentatively. I love the peculiar sense of logic that the current system has. All children have to have a carseat, it’s the law. Not to mention that all kids with additional needs have a multitude of appointments to get to that they need transport for. Are they funded? Absoutely not, no. I wouldn’t mind if they were £30 but, as with the word ‘wedding’, mention the words ‘additional needs’, and you can add on some zeroes. The cheapest ones start at £600 and just keep on rising. OK, I said, how do I find the one that’s right for Small? And this is where the system falls over. She didn’t know. Despite the fact that every child needs one, and I can’t have been the first person to ask, she didn’t know. My OT is good, she really tries for us, but she could give us no pointers. I don’t understand why there is this gap in the system.

Thank goodness for the online community. I love that people are free with their knowledge. We were recommended carseats and we were recommended suppliers. Having made appointments with 3 different suppliers we found one we and Small liked. You could tell he liked it as he just sat there grinning. And flapping. Then – how can we fund this? Because it’s £600+ and we don’t really have that just knocking about?

There are, wonderfully, charities out there whose sole purpose is to fund equipment for disabled children. We looked at Newlife, who are amazing in what they achieve and saw they would fund a carseat. I dithered as we also need a bed funded for Small, and these are *really* expensive, but the carseat was becoming urgent. But really? I must sell my soul for this basic piece of equipment? To fill in the grant application you must tell them diagnoses, what your income is, what benefits you receive and if you are funded will you help by sending pictures of your child using the equipment. Without wishing to bite the hand that feeds… these are all very invasive questions/ requests into what would normally be our very insular world and they do grate. But you learn, with a child with additional needs, that you are no longer insular and that, really, pretty much whatever it takes to get recognised, listened to and funded is ok by you.

Thank you Newlife, we love it.

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Newlife is here:

http://www.newlifecharity.co.uk/

Mick from Windmill Special Needs Co supplied our carseat. He drives round the whole country so will go wherever you are:

http://www.windmillspecialneeds.co.uk/home/html/car_seats.html