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.