Tag Archives: Firefly

Space to Change

Two weeks ago, Boo had an opthamology appointment. He is quite long sighted, which has given him a double squint. He wears glasses most of the time to correct this. Who am I kidding: he is supposed to wear glasses most of the time but spends most of his time throwing them around the room for attention. It doesn’t bother him much and his glasses are adorable. He looks like a mini-Professor. But we hope he will outgrow it so he doesn’t need surgery.

There was good news at the last appointment. The glasses are doing a good, if not perfect, job in correcting the squint and his vision is improving. And in other good news, we went in on time! Usually opthamology runs 90 (yeah, count ’em, 90) minutes late.

So it was a good appointment all round really. Well, nearly.

Well actually, not at all.

You see, Boo, expecting to go in 90 minutes late, decided to fill his nappy 5 minutes before we were due to go in. So we had a problem I dread when I go to appointments with Boo: the problem of finding somewhere clean and safe to change him.

You see, Boo is 2. And he’s a large 2. His Dad is 6′ 4” and Boo has never really understood he was born prematurely. So I can’t put him on a baby change table. He is too big. I asked where the nearest disabled toilet was. I was directed to it.

Fortunately, it was in the new wing of the hospital. It would be fine, I thought.

It wasn’t. Not. At. All.

First, I struggled to get me and Boo’s adapted buggy through the supposedly wheelchair accessible door. After much breathing in we got in there. When we got there, we were greeted with a new but unsanitary room, with urine and dirt on the floor. There was nowhere to put Boo except on the undersized change mat I carry about with me on the floor. Since the mat is too small for his body length, I put it under his bottom and legs. I took off my cardigan and put it under his head, knowing I could wash it when I got home. And let me tell you, it didn’t go in on a 30 degree wash!

The process was unhygienic and frankly degrading.

Thankfully, Boo is too young to feel that yet. But I did. And he will feel that way in the future. Because Boo is very aware of what’s going on around him. He is only going to get bigger and potty training is not going to happen any time soon. He may be in nappies for years.

And this was a hospital. Not a village church hall. A hospital. A place where a good number of disabled children can be found every single day. And they had no suitable changing facilities. And the best alternative they had was unclean.

This is wrong. Plainly wrong as well as posing health risks to our little ones. This is a question of health and of dignity.

I was going to blog about this experience straight after it happened, but delayed things when I learned of the ‘Space to Change’ campaign that Firefly are launching. They have lots of exciting plans in the pipeline, but for now, they are interested in collating as much feedback from parents and carers as they can about how we toilet or change our children when you’re out and about. What are the issues we face? And what examples of good practice have you seen? It’s an issue I feel passionately about and am happy to support Firefly in their efforts.

If you have experiences you would like to share, there is a quick and easy survey you can fill out here.

Please do take a few minutes to complete this and share the link (https://www.surveymonkey.com/s/YLNV2ZV) as widely as possible.

Yesterday, I was at the Houses of Parliament giving evidence to an Inquiry into disabled childcare (blog post to follow!). One of the many things I learned was how invisible our problems are to other people who lead more typical lives if we don’t make ourselves heard. I also learned how shocked people can be by things we all know and have come to accept as our everyday reality. I have learned that people might want to help us change things. So here’s another opening for us to be heard. Please take it.

And in the meantime, I will dreaming about this bathroom.

 

 

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GoTo it Boo!

Few words, in my experience, offer a more stinging (if metaphorical) slap in the face to parents of children with developmental or physical or cognitive challenges than ‘normal’. Soon after our lives have changed forever, we are encouraged by well-meaning friends and family to embrace the ‘new normal’ that is prematurity or additional needs. We can call it Holland, if that makes us feel better. It doesn’t always. But the ‘new normal’ gets accepted because frankly, what choice do we have?

Then after a while, if you’re anything like me that is, you find you can’t utter the word ‘normal’ any more at all (‘neurotypical’ is my current word of choice). ‘Normal’ sticks in your throat and if you manage to expel the word from your diaphragm you feel this instinctive urge to move your fingers in that ‘air quote’ kind of way, even though instinctively you throw up a little bit in your mouth when anyone else uses air quotes in your company.

Because you realise that the word ‘normal’ is a sham, a lie that attempts to cover up the beautiful complexity and messiness of life. And it’s not a white lie. It’s a big, dark, vicious lie that those who lay claim to being ‘normal’ use as a weapon against those who just happen to have bodies and minds that don’t conform to rules arbitrarily created in the mists of history.

I despise ‘normal’. But all the same, sometimes, all I want is a little piece of it. I’m not saying I want Boo to be anything other than the amazing, funny, beautiful and smart little boy he is. But I would like a bit of normality in our life. The ability to do things others take for granted but that are very difficult for us. Like shopping in a supermarket without crippling my arm by crooking it through a handbasket and trying to steer an impossible heavy buggy with a mind of its own at the same time.

Or going to a coffee shop, cafe or pub, or just to a friend’s house for a cup of tea. You see, Boo can sit for only very short periods independently, but not reliably. And even so, to do this, he needs to sit cross legged or with legs at a 90/90 angle. I haven’t found a single commercial highchair he can sit in. (I have tried lots.) A brave attempt to have a family meal out on New Year’s Eve involved much staring as we tried to wedge Boo in the lovely wooden highchair provided with rolled up and strategically placed picnic blankets. When after 5 minutes, he inevitably slumped and we put him on our laps, indigestion and more than usual back pain ensured. Dining out has become contact sport for us.

The easiest thing for us to do is not to do things like this. To give up on these things. The little things in life. The things that are sometimes not even all that exciting (online grocery shopping will always come close to the top of my list of the world’s single greatest achievements- really, I hate supermarkets) but which become impossibly seductive when you can’t do them any more.

But now, we can.

Last week, after much deliberation and consulting folks on Twitter and the blog’s Facebook page, I ordered Leckey’s Firefly GoTo! seat, which promises a life where normal activities become possible.

The seat is a liner, which is strapped to the back and bottom of dining room chairs, trolley seats or even certain playground swings. The child is secured in it by a five-point harness, which, when tightened, also brings the low sides round the child’s pelvis and fixes it.

I have tried a seat liner/insert before. It was made by a different manufacturer. It cost a fortune, but I would have got the money together to buy one if it worked. But it didn’t. I was sure it would. But Boo’s trunk was too wibbly. It couldn’t support him. Thank goodness I didn’t buy it. Thank goodness a friend had one and kindly let me borrow it before I parted with Boo’s precious DLA money.

I didn’t want to make the same mistake with this seat, but ever since I saw a description of it on Special Needs Jungle and then in Cerebra‘s newsletter (Cerebra receives 7% from all sales) I wanted one for Boo. I wanted it to work for Boo. I wanted it to make things possible that were a pain before. I saw it as our ticket to a piece of normal. To visits to friends’ houses and the High Street. The fabulous videos on the website looked so good. Too good to be true. Surely this couldn’t work. It looks so simple. So slight. Since having Boo, I’ve come to think that every piece of effective equipment needs its own house extension.

But tweeps and Facebookers said that they had heard that this might work and maybe I should try it. And so I contacted our OT to ask if she could get me one to try. She had never heard of it. She says reps don’t visit our hospital routinely. That it would be difficult. I gave up. And then I contacted Leckey (who were incredibly prompt and helpful in their reply to my email) and after expressing my concerns, they told me of their ‘unsuitable goods’ policy. If it didn’t work for Boo, as long as we sent it back in the original condition, we would be refunded. I couldn’t pass up on that.

And this is what happened.

Image

This is Boo, sat on on of our dining room chairs. His hands are blurred because he can move them. Because the seat gives him enough support in his marshmallow trunk (a trunk so low tone that Lycra garments have been recommended) to use his often very stiff upper limbs.

This isn’t the best photo in the world. I have others. Lots of them, and they are lovely, but this is the only one I could crop so his anonymity could be retained. The lighting isn’t right and the focus and composition leave lots to be desired.

But this, for me, is a photo to treasure. Because it isn’t just a blurry picture taken on an Iphone. It’s a little glimpse of normal.

Watch out High Street. Here we come!

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