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This much I’ve learned…

Some days I don’t want to get out of bed. Some days I’d like to pretend none of this has happened and that myself and my husband had decided to stop at our beautiful daughter, be satisfied with the one child.

Not that I don’t love my little boy, but sometimes…. Good god the effort of looking after him… it overwhelms me.

The constant, constant daily care. The constant care that you would give a newborn; knowing that at some point it would let up, get that little bit easier by degrees.

With Alex, it’s probably going to get harder as he continues to grow, get more mobile and more wriggly and I get, well… older, less patient and more cranky.

But I do it because I do it. Because he is my son. Because I love him unconditionally.

Because he fills my heart. Don’t set me apart. I’m just a parent doing what I can for my child. And you would do it too.

I wasn’t chosen to do this. There is no divine plan. No one ‘up there’ said ‘Ooh, look, she’d cope pretty well with a disabled child – throw Alex to her’.

Sometimes genetics just doesn’t quite work out. We didn’t ask for this, and though I can’t imagine life without Alex in it… honestly, I’m not sure we’d ask for it again. This is hard hard work. Everyday.

We don’t need sympathy anymore. We had it in bucket loads right at the start of our journey with Alex. At that point where our world tumbled down.

When we realised, at 8 weeks, that something just wasn’t right and that those in the medical profession had ceased telling us to stop worrying and took us far too seriously couldn’t give us a diagnosis.

We needed it then. We needed support, time to grieve, food to eat, to readjust our lives.

Now we are a family. In many ways more tightly knit than most. And we don’t need ‘Ooh, bless him’, or ‘At least he’s happy’ because what you are really doing is patting us both on the head, even if it’s meant well.

Don’t ask me about Alex, ask me how he’s doing at school, what his favourite things are… I am bursting to tell you because I have so much pride in my little boy that I want to shout his achievements. Just like any other parent. And if you take the time, to say hello to him, to allow him the moment to register you and decide whether or not you are deserving of a smile… you will see what I mean.

Language becomes incredibly important. It always has for me, but with Alex, even more so.

Can we leave behind: ‘mentally handicapped’, ‘a little backwards’, ‘slow’. Alex has ‘severe and profound learning and physical disabilities’. Say that.

I know it’s longer, sounds a little more medical, but this is my child we’re talking about. Those words tell you where he’s at and still maintains his dignity. Whilst we’re here, Alex – and all the other children – they don’t have ‘special needs’, they are ‘additional needs’.

The needs he has – personal care, help to play, more time to learn – they aren’t special, they are additional, above and beyond what a neuro-typical child his age would need. The word special has become so synonymous with kids with additional needs – and not often in a good way - that it’s time we stopped using it. Let’s use these new, better, words.

The disabled sign can be a bit disabling. The sign of someone in a wheelchair is such good shorthand for ‘disabled’ but what does it make you think of?

Before having Alex, if I’m honest, it made me think of an old person in a wheelchair. I realise a picture of, for example, a child having a meltdown in Sainsbury’s because it’s just too loud would be a little fiddly, but somehow we need to tell people that disabled is so much more than ‘not being able to walk’.

We need to integrate this huge minority into society. This means more inclusion in the world, more visibility.

We worry sometimes I think that by highlighting our children we open them to ridicule. And I worry about that as much as anyone. I have a fierce love for Alex and for protecting him. But by putting them out there, we normalise them and we normalise their conditions.

They cease to be ‘other’, ‘different’ and just become themselves. (Alex, by the way, needs a symbol that means: can’t walk, can’t talk, can’t go to the toilet by himself, but is exceptionally cute).

Weirdly, in many ways, I’m a better person. Going through the experience of having Alex, and all the possible outcomes we could have had… has made me incredibly thankful. I’m not a spiritual person, but I am constantly surprised by how much small things give me immense joy.

I think our initial worry and concern about how our life could be was so great, that every day that goes by without event becomes worthy of celebration. And a glass of wine with dinner? I thank you.

Alex’s disability isn’t the problem, the world just needs to catch up.

Just going out for the day takes immense planning. How level access is it where we are going? Are there narrow paths? Will there be anywhere to change him? Is there a good café stop so that when we’ve walked we can eat without re-loading the car to go somewhere else? Can we still be bothered?

We want to get out as a family but our destination has to cater for us all: we need ramps, we need accessible paths, no stiles, wide pavements, wide aisles and we need lifts and disabled changing areas that have both hoists and big changing tables.

The world is catching up but I’d like it a lot quicker, please.

We wouldn’t change him for the world. We love him. Just as he is.

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

As Alex Grows Up

Meet Our Blogger

This is, primarily, a blog about our little boy, Alex. He has an undiagnosed genetic condition which has resulted in global developmental delay with a visual impairment. In reality what this means is that although he’ll be 4 in July, he’s non-verbal, he learnt to sit up properly only within the last 6 months and is now a whizz at spinning round on his bottom to reach things and grabs at anything in his reach – safe or not… He needs help with every single every day activity and sometimes his hand/ eye co-ordination is off. It’s bang on, however, should you offer him a chocolate biscuit… He’s a mystery, an enigma and utterly utterly gorgeous. He’s also cheeky. And funny. We've started this page for you to keep up to date with him, watch his progress and track our fundraising efforts.

View Helen’s Profile

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