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.’

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?