Putting down a marker

I think sometimes it’s worth putting a marker in the sand. To say ‘We are here’ in case, later on, we forget how far we have come. We forget sometimes, OH and I, just how far Small has come on his long and hard-won developmental journey. There was a time when we marvelled over the fact that he was able, with great concentration, to close an egg box. We cried, he and I, in the kitchen as we made Small do this again and again. We had worried he would never use his hands. Or his eyes. Or his legs. Yes, we set that bar low, because we just couldn’t cope with any more disappointment.

Small has come a long way since then.

He picks up toys with great dexterity for a boy with no pincer grip and CVI. He is all about grabbing. But he grabs with thought and direction. He picks up toys, keys, everything and turns them over, examines them like a watchmaker, passes them from hand to hand, before dropping them down to start on the next item that’s caught his eye.

He understands pushing buttons. My mother, on more than one occasion, has noted that he has more noisy toys than any other child she knows and she’s probably right. Small loves cause and effect toys and we love giving him the opportunity to show this to us. The noisier the better. When he and Big are in full flow…. actually, it’s lovely. I’m sure if he were a regular 3 year old I’d be telling them to stop it as they were making too much din but we are just grateful there is noise in our house from both our children when we were so scared, for such a long time, that this would not happen.

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He will finger feed. I’ve touched on this in previous posts but I’m just going to mention this here too. I can give him bread, raisins, cheese, pasta bits…. and he will pick them up and he will eat them. He does not play with them, he does not spit them out. He understands that this is food, not poison, and pops it in his chops. For two reasons, this is amazing. First, he never used to do this, he used to pick it up, squish it in his fingers and drop it. If I then put it on a spoon and fed it to him he’d eat it no problem. Go figure. Secondly, it frees up my hands. I can make a pile of food chunks and hand them over bit by bit thereby enabling me to help Big with the more complicated parts of eating like cutting up toast and avoiding putting your freshly washed and ironed cardigan in the butter. Again.

Small sits up. Properly. The straightness of his back varies as to how long he’s been there, so we do still sit him on his lovely wedge just to remind him, but he does sitting. Once again, for those of you at the back who may not have heard, he does sitting!!! This has, no underestimation here, revolutionalised life. Small is quite a tall chap, and lying him down for a kick was starting to take up a lot of floor space. Now he sits it a) makes him look a bit more age appropriate b) allows him to play and interact with people and toys in a whole new way and c) makes it a whole lot less likely someone will trip over him. I cannot tell you what pleasure it gives me to put him down to sit, not put him down to lie. Something I rarely mention to anyone is that, back at the start of our medical journeying, our geneticist said ‘If they sit, they will walk’. He weight bears. He will step. This is done with considerable support, but he will take a couple of steps.

Wonderfully, comprehension is coming too. When we say to him, ‘would you like some breakfast?’ Small will say ‘More’. Small has made the link between breakfast/ lunch/ tea/ all the words relating to food and the word ‘More’. Food is a big motivator for Small. Unsurprisingly, chocolate is possibly the biggest motivator of all…

Don’t get me wrong. Small has a set of severe and complex disabilities that mean he will need lifelong care. No doubt. Every day is a new challenge in terms of what that will mean for him individually and us as a family. But Small is striving and his brain is trying and that, as with all our children’s developments, that has to be marked.

We are all amazing

When I sat in my first NCT meeting all those years ago we talked about the things we’d like to do with our babies. ‘Take them cycling’… ‘go to the cinema’…’explain the stars’. And we did, and we do, do these things with Big. Nowhere in those conversations did we say: ‘Spend endless hours in hospital’… ‘Use Google to untangle the reports full of medical language we don’t understand’… ‘Fill our spare time researching the equipment our children need because Social Services is so woefully underfunded’. And yet this has been our life with Small. Not just us, hundreds and hundreds of other parents are in the same boat.

I think sometimes we underestimate quite how amazing we are. It’s true that when you sign up to parenting you have no idea how much your life will change. I remember friends doing that knowing chuckle about how we’d never lie in or read the paper again. This and many other truisms came along with Big. She was a shocking sleeper at first (colic? reflux? teething??) and needed constant attention, as all newborns do and I remember the total relief of going back to work and being able to have my lunch by myself and, ooh, read a book.

But when your child has disabilities, you are no longer simply his or her parent. You are their carer, their advocate and the constant educator of the world on both disabilities as a whole and your beautiful child in particular. It can be more tiring than you’ll ever know. But we all do it. We fit these things in around the rest of our lives, our work, our partners, our other children… the never-ending needs of our households just to stand still, never mind advance forwards. And we do it with a sense of humour because, frankly, that’s all that stands between us and a vodka bottle sometimes.

We know this isn’t normal, but, to us and all SN families, it is. It’s only when you stand back and look at what you do, how you do it and the extent to which you push yourself forwards Every Single Day to advance your child that the sheer enormity of it hits you.

We are all amazing.

The Staff of Life

I suspect we’re not the only family where food, and what’s going to be in the next meal, features highly in our everyday conversations. I’m not proud to admit that one of my first waking thoughts – along with ‘Where’s My Coffee?’ – is ‘Oh God, what are we going to have for tea?’ Tea time is that end of the day, just before we can tumble the kids into bath and pyjamas and bed time, when sugar levels are at their lowest and tempers are, shall we say, short?

Many many articles have been written about children’s mealtimes… how to keep them at regular times of the day, how to get them to eat properly, use their knives and forks appropriately and I have lost count of the abundance of cookery books that tell us how to cook for our children. None of these I notice have ever addressed the thorny issue of HOW TO GIVE MY CHILD LUNCH WHEN HE WON’T EAT BREAD. (now there’s a niche market waiting to be tapped…)

For Small… the texture of bread just didn’t do it for him. He would take it out of my hands, knead it until it had the look and feel of raw dough and then…. He’d look away from me in disgust and drop it. If I managed to trick him into opening his mouth long enough for me to pop a piece in… he’d scrunch up his face like I was trying to poison him, lift up his tongue and force this rogue thing out. This was not food. Where is my lunch?? So, unlike every other family where you can just fly in from the morning’s activities and make sandwiches I’d be boiling up pasta… vegetables… the old favourite, the sweet potato, just to tempt his lordship’s tastebuds. Or, whisper it, in desperation I’d pop open a jar of Hipp’s finest. It’s definitely organic. And better than crisps.

And then something magical happened. Of course it happened at nursery, which is where almost all the new things happen. They push him harder than we do, as they’re not trying to fit in ten other things at once and, also, when he whines that it is outside his Small-ville comfort zone, that maternal guilt thing doesn’t kick in and they see if he will do it anyway. I can’t tell you how great nursery has been.
‘What did he have for tea?’
‘Well, he wouldn’t eat the scrambled egg’ (texture again), ‘so we gave him cheese sandwiches’.

I can’t quite describe the miracle that is eating of food as, unless you’ve started as far back as we have, it can be impossible to comprehend. Our OT says that once they have core stability, and aren’t spending all their brain power working out sitting, they start working on chewing. I thought this was ridiculous but it is true that now Small has worked out sitting (Small-style you understand, but he is there, and he is stable) he has started chewing. We have officially moved past mush. He has toast for breakfast, sandwiches for lunch – whipped up in 5 minutes! – and, well, he doesn’t have bread for tea, unless it’s emergency beans on toast, but you get the idea. It enables him to join in that most simple of things – eating the same food as everyone else, albeit in smaller chunks. He trusts me now that when I give him some food, it’s something he will eat, he doesn’t play with it, he’ll just eat it. It’s a small step indeed, but a huge one in terms of Small doing something just like the rest of us.

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That’s why I’m linking up to Small Steps Amazing Achievements this week.

Ethans Escapades

How did all this stuff get in my house?

It’s an accepted part of life I think that once we have kids we, as parents, are fighting that incoming tide of very-very-important-to-me-mummy stuff. The lovely wooden toys we had anticipated in our heady pregnancy days are, in actuality, cheap plastic rockets, horses… actually-I-don’t-know-what-that-is? that our children adore and make us promise (Promise!) not to throw them away.

With Big this started with plastic tat and has now graduated to larger items of must-have pieces of kit – scooter, bike, rollerboots – that clutter my hallway and under stairs cupboard. But this is how she rolls, and I see how much pleasure they give her. Small… well, Small has brought other kit into the house, not so much for enjoyment, more to ease life. These fall into different categories. Some I will eulogise about at great length for the change they have made. His highchair is one of these:

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Where once he used to slump and be uncomfortable now he is upright, at the table and joining in.

His pushchair is enormous, and makes some shops impenetrable, but we love it. He loves it. It’s straight-backed. It’s comfy and easy to push which means it’s possible to get him out of the house and joining in with everyone else. He so loves being outside that it’s invaluable.

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Lastly, hurrah for his Seat 2 go. I never ever thought I’d say this as, when we first got it, it was useless. He’d slump so easily that he couldn’t sit up at the table and we avoided any meals out of the house. But the pommel changed everything. Small likes to kick and wriggle, but even the might of his little body cannot shift the pommel and upright and at the table he stays. We have eaten out. At restaurants. And felt like a real family.

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But then there is the stuff that I don’t like to champion. Equipment that is supposed to help, but does not. I give you the standing frame. It’s behind this door:

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We all hate it. Small hates it the most. He hates going in it and shouts at me, so I’ve stopped using it. We did use it as somewhere for the post for a while, but it made for a big shelf 🙂 A friend has finally given me the strength to ask to give it back. I am liberated.

The bath seat my OT tried to give me in a budget-saving exercise is here, in the loft:
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This time, it was totally impractical. We took one look at it and stored it. it’s big and bulky, would have to stay in the bathroom at all times and I have two children to bathe, not just one. We are finally going to look at a smaller, more portable one, next week.

And then there’s the bed. Good God, the bed:

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This arrived on Friday and I don’t know what I was expecting, but it wasn’t this. Without wishing to offend anyone, this is a bed of convenience. It’s not the kind of bed a small, jolly little boy of 3 sleeps in. It has wheels for moving down corridors. It smells of plastic, of hospital, and this smell has permeated my house. I cried like I haven’t cried when it arrived for all it represented and for all I didn’t want it to represent me, us. It has to go back. I called the delivery people in desperation to get it returned the same day.

‘Sorry, why did you want to send it back?’
‘Because it’s horrible, and I don’t want it in my house.’ Pause. ‘There’s not a tick box for that is there?’

Just because he is disabled does not mean he should have unpleasant looking equipment in his life. In many ways, surely that’s all the more reason to work on the aesthetics? To make a condition, a situation, a little more bearable? Not so grim you can’t look at it? Won’t use it? Would rather go without?

So this week we go hunting for a high bed, onto which we can attach side bars because I want my boy to have a boy’s room, a child’s room, not a quick answer to a problem from our support team. There has to be a more holistic approach to aid and equipment, not just, does it do the job? but is it pleasing to look at, does it have form as well as function? Because this equipment – unlike the bike, the scooter, the roller boots – was not anticipated, was not wanted, so the least it could do when it comes knocking is have a friendly smile on it’s face.

We’re all going on a….

You know the rest, right? ‘… Summer Holiday, / no more working for a week or two. / Fun and laughter on our summer holiday, / no more worries for me or you’…

Well, off we were going on our first Big Trip with Small, and I’ve never been so concerned about the lack of fun/ laughter/ no more worries. It should be fun we know this, to get away, get a change of scene, go somewhere new and lose the old routine for a while. But that’s when you don’t have a child with disabilities. Small thrives on the opposite of all of these, he likes what he knows, and loves a bit of routine. Hell, so do I, and that was before I had kids, but you get the idea. However, Big has been desperate for a proper summer holiday and OH and I felt we needed a break, so book it we did.

We opted for France, a small gite complex where there would be other people for us to talk to and other children for Big to play with and Small to watch. There were definitely some expected and unexpected downsides to this trip. All holidays are expensive, and we’re lucky that we can afford to do it, but Small did his very own best to aid the French economy. We took the ferry over, but booked a berth there and back, just to give us all a little space, and Small somewhere to lie down and have a wriggle as we didn’t want to keep him in his buggy for four hours. Once in France, we had to break the journey there and back as he was never going to manage 6 hours in the car. We booked two rooms in the hotel, not one, so at least someone got a good night’s sleep. Small, generally, sleeps well, but if he wakes up he’ll either chat and thump his feet for hours, or shout and we couldn’t face that with all of us in one room. And the gite we booked had three rooms, not two, as for the same reason, the kids could not share.

And the sleeping…. Small is an ok sleeper. Generally he’ll go to sleep around 7-8pm and get up anywhere between 5 and 7 with possibly a small wake up in the night, but he’ll often just play and go back to sleep. But in the last few weeks this has turned. He’ll either not go to sleep for hours or go to sleep fine, but wake up in the middle of the night and shout. This was exacerbated on holiday. Our neighbours swore they heard nothing, but we felt bad, and often took him out for a drive along the darkest roads in France in the dead of night just to calm him down.

However. We had a wonderful time. I relaxed. OH relaxed. I haven’t seen OH that relaxed in a long long time. Big went feral. It was so lovely to see. And Small thought everything was wonderful. He loved croissants, especially the chocolate ones (that was definitely a ‘more’) and when Big went off splashing in the pool it was very clear he wanted to go too, though my God it was cold! He was happy. We were all happy. Exept at 3 in the morning… driving round French roads… in the dark… without those things you’re supposed to have on the headlights that we’d forgotten…

We’re going to go again next year.