Monday, 13 April 2015

What can I tell you?

On Friday 24th April the third Undiagnosed Children's Day takes place. The aim is to raise awareness of undiagnosed genetic conditions and SWAN UK (syndromes without a name), the charity that offers support and information to families of children affected by these conditions.

What could I tell you about this awareness day and the children it supports? What could I write that would give you a sense of what it is like to have a child living in the unknown? Why is it important? 

What could I tell you that would make a small impression on your heart? That would make you stand still for a second in your busy day and hear about our children? A day that is already overflowing with the demands of your own children, jobs, and your own hopes and fears.

What could I tell you about my boy - just one of the 6,000 disabled children that are born each year with a genetic condition that will remain undiagnosed?

I could tell you about the waiting. The horrific, terrifying waiting. Living in limbo as test results for diseases that are life limiting and life destroying chug through the system. That to become "undiagnosed" these diseases have to be ruled out first. That this can take years.

I could tell you that even when the tests come back negative that doesn't mean that the prognosis is now favourable, that we have dodged a bullet - it just means that the doctors can not find what is wrong.

I could tell you that hundreds are starting to get a diagnosis each year as genetic testing becomes more sophisticated, but in most cases this is meaningless as the genetic break points and mutations are so rare that there is no collective to garner knowledge from. 

I could tell you that these children are writing the medical books for the future. That because of them generations to come will not have to face a future so uncertain.

I could tell you about the fear. A fear that bubbles every time they are ill. A fear that surfaces every time you look too far ahead. A fear of your own mortality - as who will care for them the way that you do. Or worse, a fear of a time to come that does not include them.

I could tell you that most of these children are so medically complex that the doctors don't know which way to turn. That because of this they miss stuff. That everyday common conditions that would transform their quality of life can go untreated for years.

I could tell you that a simple milk protein allergy was killing my child. He wouldn't be here now if one doctor hadn't decided to think outside the box.

I could tell you of the brutal things we have to do to our babies - the many, many blood tests, feeding tubes, how we have to decide whether to subject them to painful operations that we are not sure will work.

I could tell you that sometimes they are deemed unworthy of these medical procedures - that they are a waste as they are "the least of their problems." Yet any good doctor would tell you that small things can make a big difference.

I could tell you about the everyday stuff for us. About how galling it still is to pin down my son every single night and inject him with a hormone so that he can grow.

I could tell you that he wakes in the night from a hunger he doesn't understand.

I could tell you about the feeding issues. The soul destroying feeding issues. How each meal of baby mush can take over an hour. That to start we need to hold down his arms and force in the first few mouthfuls as each time he is afraid.

I could tell you that he will not eat anywhere apart from home and school (sometimes). That he currently will not take his milk - the nutritionally complete formula that keeps him alive - from anyone else but me. That if I am not there, he does not drink.

I could tell you that he eats just enough and is gaining weight, albeit slowly, so his doctor is reluctant to intervene at this stage. That this is just watchful waiting. That a feeding tube into the stomach is eventually inevitable.

I could tell you about how hard it is to get out and about. The long lingering looks from people that turn away quickly as soon as you look back. People who wonder about a four year old being nursed still with a bottle, who flaps his hands and makes funny noises, how he moves across dirty floors with his hands as this is his only mobility.

I could tell you that I feel sometimes that they judge.

I could tell you that I can't even tell them what is wrong.

I could tell you that pity and "feeling so bad for us" for us is almost as bad as people not giving a crap. 

I could tell you that with no diagnosis it is harder to access support. That most of our families have to battle to receive respite and basic services.

I could tell you that without a name for his condition we were turned down to start the process for house adaptions (a process that takes years). That we were told to call back when things get so bad that we can hardly lift him - to wait to start this process when our backs are literally breaking from lifting and carrying a heavy non-mobile child.

I could tell you that walking (if ever) is years away. And when it comes he will still tire easy and probably always require a wheelchair. That climbing stairs may be a bridge too far.

I could tell you that we often feel like we are getting it wrong - that we don't do enough. That we did something to make this happen.

I could tell you that we struggle emotionally at times, take it out on the wrong people. That I use emotional overeating as a coping mechanism and that makes me feel worse about myself.

I could tell you that it is hard for his brother and sister to explain him to friends - what can they say except that he doesn't work very well. That they have to miss out on things because of him, that they take this all in their stride.

I could tell you that every time there is an issue with their friends, school or their behaviour that we panic that this is related to the world we live in that is different from their peers. That they are struggling and we are too busy to see it. 

I could tell you that with no diagnosis we have no idea whether it will affect their children.

I could tell you that we don't know what tomorrow will bring. That it may all get worse before it begins to get better. 

I could tell you all of this.
So you can have a glimpse of life with an undiagnosed child.
But there is more.

I will tell you that I wouldn't now change a hair on his head.
I will tell you that he makes us smile every day. That we are proud of him. Of all of us.
I will tell you that together we are a strong team.
I will tell you that he has given us so much more than he has ever taken away.

I will tell you all of this.
But most importantly I need to tell you this.
He is a little boy. The person he is supposed to be. 
Just like you and just like me.

This is me telling you about one undiagnosed child. 
There are many. We are legion.
Each with their own medical battles.
Many are in pain, lots are plagued with seizures, a good number struggle with behavioural problems. With no diagnosis - they are viewed by the world as naughty.

Please share to spread awareness of Undiagnosed Children's Day. Further information can be found on the SWAN UK website or Facebook page.

Are you a parent with an undiagnosed child? What would you want to tell people? I'd love you to list them in the comments below,

Tuesday, 7 April 2015

8 ways Facebook turns me into a bloody brat

Facebook I do love you. How else would I know that my third cousin removed had couscous for the first time on Wednesday, or that Lynne from two roads up is in potty training hell. I like a good nose at people's lives - I really do - but listen you are starting to send me crackers. You make me regress into a teenager (sometimes a toddler) - and no one wants to go back there.

Here's how:

1. I (sometimes) become Veruca Salt
You know the spoilt rich one in Charlie and the Chocolate Factory. The one we tut at but would so love to be. Everything she sees, she now wants and absolutely now needs. And her Dad will probably get it for her. Lucky cow.
  • Kerry Simpson from school has new wardrobes: My wardrobes are now rubbish and I need new ones. Right now.
  • Stephanie Keele (who I met on holiday I think) is relaxing in her garden after her husband has finished the gravel path: I have no gravel path in my garden. Why?! I need a gravel path otherwise my life is crap. Let's go to B&Q now.
  • Helen Travis is in the park with a picnic and all her children are smiling. Come on, let's go. Put the iPad down, stop moaning about the rain - just smile for the bloody camera.
  • Julie Barton has a new baby... hang on perhaps the coveting thing doesn't always work...

2. It is the cause of lots of arguments in our house
If Facebook drives me crackers, it turns my long-suffering husband into Mr Jacob.
Him: Are you on Facebook again?
Me: Are you watching football again?
Him: You're a nark.
Me: No you're a nark
Him: You're a nutcase.
Me: You smell of poo
Him: You smell of wee and poo.

Perhaps we should both do something better with our time.

3. Messenger keeps grassing me up
You see I am a bit of lazy cow and with three children and a job, sometimes I am a wee bit wiped out of an evening. If a friend texts and I can't even summon up the energy to reply then that's all cool as I can reply days an hour later and say "hey just saw this now. How's you?" But no, with bloody sanctimonious messenger it tells people when you have read the message. Therefore you kind of have three options: do not look at the message and kill yourself with curiosity wondering what you are missing out on; click into it and have to reply perhaps causing point number 2; or look at it, ignore it and know that your mate knows you have just ignored her and she is currently flicking Vs at the phone.

4. It turns me into a crazy person
Someone recently defriended me on Facebook and I was so outraged I may have sent her a crazy message saying: "hey why have you defriended me?" It was one of those friends that end up on your list, but you don't really know them in real life (thus significantly reducing the chance of you actually annoying them). When faced with such a message I would have blocked the person but she was all lovely. She patiently explained she was culling her friends' list so she could, you know, catch up with actual friends! She then added me back on. I am such a loser. How can I be all rational in real life and then get in a huff if someone I knew four years ago does not tag me in a joke. I think my primary school children behave better on the playground.

5. It shows my life in all its sad glory
My timeline is pretty depressing - the equivalent of a supermodel's fridge - completely sparse. It amounts to three tagged pictures of the kids and a message off my sister asking me if I am going to my Mum's house. I keep thinking I'll take more pics of me doing cool, trendy stuff but then I realise that ship has sailed along with my stomach muscles. I did go on a blogger meet up recently and there were tons of photographs floating about social media the next day. Great I thought - now is my chance to add a picture so people don't think I sit in my house every night (which I do). But when I looked at my phone, there was only one picture as a memento of the whole day and it was this:

What a night. This is me snogging Bradley Cooper

6. It can make a bad day worse
Guaranteed if you have just eaten a pack of some Jaffa Cakes, there will be a picture of your cousin glowing after a run; if the children are driving you insane and you are wondering if you need a parenting course, your old neighbour will flash up with snaps of her making mini fairy castles with her brood; just argued with your man, your mate is on an ace date night. Like a warped game of opposites you can find anything you need to make you feel worse if you are in that frame of mind.

7. Is that passive-aggressive meme about moi?
As sleep deprivation, general grumpiness and a touch of paranoia come with the parenting territory, we may have all at some point wondered if one of those narky memes from a friend is aimed at us. You know the ones saying: "My mate is sh*t as she never replies to my texts" and "Some crazy loon emailed me yesterday asking why I had defriended her. Does she really need to ask!"

But she has time to send crazy emails

Obviously I am so marv that none can be aimed at me. Also that would be really conceited to think anyone would be bothered to shame you on Facebook. So it's not about me. Phew. Or is it?

Are you trying to say that my arse is like an ark?

8. What is it with all the death threats?
Hey you - if you do not like and share this picture of a beautiful flower within five seconds you are going to die a horrific death RIGHT NOW.
Erm.. feff off.
My sister (yes my own flesh and blood) sent me the scariest one about a bullied girl that fell into a well and then came back and killed all her school friends. It said that if I didn't share her story then that night she was coming for me and she would kill me (I think my sister loves me). I was all big deal O'Neil and clicked it off without a care in the world. THEN that night when the baby woke and needed milk I couldn't go downstairs on my own as I thought she would be waiting for me (she probably was but after two hours of my boy wailing and me and the husband arguing about who was getting up she probably climbed back in her well for a bit of peace). The next day I shared her story big time.

So as well as the three tagged pictures and a message from the sis, I have left a death threat on my timeline for all to see. I wonder why that lovely lady felt the need to defriend me.

So perhaps the moral of the tale is to maybe leave Facebook alone for a while - try and restore some sanity in my life. Stop being so crackers about everything.

Therefore I shouldn't post this on my Facebook page, engage in any comments or even ask people to like or share my post. That would be all shades of stupid. Time to be a grown up and call a halt to all this foolishness. For all our sakes.

You Baby Me Mummy

Monday, 30 March 2015

Where can I scream in peace?

Raising a child with additional needs can be very frustrating at times.
There I have said it.

It can be so frustrating, maddening, annoying, aggravating and infuriating that you will want to scream this fact from the top of a mountain.

To anyone. Everyone. Just one person who will listen.

You’ll want to grab them by the lapels and say: “this is damn hard. I don’t want to do this anymore. It’s not fair. Do you hear me? DO YOU?"

Stamp your foot if you will. Kick the dustbin. Holler at the world.

Then at other times - you won’t.
Just won’t.

Life will be dandy. All will be fine and you’ll just go about your business like the next man worrying about how many calories a much-craved chicken tikka masala has in it and whether that small hole in your boot will last until the spring transition to ballet shoes.

Wednesday, 25 March 2015

Life in the slow lane

A couple of years ago a lovely lady gave me a nudge and suggested I start writing a blog about life with my little boy and his day-to-day trials with development delay. Before this I had no real idea about the world of blogging and how vast it is.

Fast forward two years and I have probably read more blog posts than books and I am slightly hooked - losing hours at a time of an evening as much loved TV programmes now play unwatched in the background.

It kind of drives my husband slightly hugely insane.

But I am forever grateful that I found my way into this world.
I have one regret though.

Tuesday, 17 March 2015

OMG Mum you are just so cringe!

There was a period of time when I was such a cool dude. Amazingly awesome. A big cheese.

It was a sliver of a window though. If you blinked you might have missed it. The planets for the briefest moment all aligned in my favour.

Not only did it not matter that my shoes were so last year or that I hadn't cut my hair for six months. That was not expected. My husband loved me if I smiled for half a second instead of sticking pins in voodoo dolls of him. Minimum effort was needed there. In addition, there was no pressure from the peer groups surrounding me - knackered Mums whose bar was set so low that we agreed style was a snot-free jumper. If I wore lipstick I was basically on a par with Beyonce.

Tuesday, 3 March 2015

The sound of silence

“Today I stood on a sandwich, and my mummy said I could go to Little Bo Peep Land later.”
“I am a bit not full up.”
“I want Santa to bring me a doll and doors for Christmas.”
“I don’t like dreams about monkeys. I like dreams about chocolate buttons.”
“I saw the Moon smile and my daddy said we can do skipping when he cooks the dinner.”

I take my three-year-old niece to pre-school every Monday and hand in hand we have a little chat as we meander slowly down the long path to the door from the car park. Well, when I say we have a chat - she chats, I listen. And I love it. She just babbles about whatever is in her brain and it is brilliant stuff that makes perfect sense in her little world.

My two older children are chatter boxes too and it brings back wonderful memories. They are still full of non-stop natter, but their conversation is more coherent and sophisticated nowadays occasionally littered with the odd malapropism. An example is a recent discussion about whether my mum should get a dog or not that prompted my seven year old to say: “she should get a small dog like a Cockapoo.”

Kids, they do say the funniest things. It is very true.

That is why it is such a marked contrast when you have a non-verbal child. Gabe is four years old, globally delayed across the board, currently has no unifying diagnosis and can’t yet walk or talk.

The lack of walking you can almost get your head around and we are lucky that he bum shuffles so he has some independent mobility, but the lack of speech can often be hard.

The silence at times can be deafening.
  • No banter about what to have for lunch.
  • No loud tantrums about choice of TV programme.
  • No excited chatter about the day's forthcoming events.
  • No stream of consciousness as you push him through the streets.
  • No retelling of an incident at school.
  • No berating a brother or telling tales on a sister who has annoyed him.
If you have a house filled daily with toddler tears and sibling squabbles you might think this sounds like a dream. I hear you. Sometimes I admit it is nice that there is one less to fill the noisy airwaves. But mostly when the shouting or singing is at its loudest in my house and my ears feel like they are about to pop, then these are the times when I'll scoop up my littlest man and whisper a promise: 

"One day my son you'll be joining in the fun and I'll never, ever tell you to be quiet."

I don’t work on a Friday and this is my special day with Gabe. It is cherished time together as the date that he starts full time school and reception year looms ever closer.

We do lovely things (amid the chores) – swimming, long walks if the weather is nice, staying in and literally throwing the toy boxes over the floors and playing together. There are giggles and smiles aplenty, but if I let them these days could go by in a complete hush.

He does have a number of words. We’ve heard him utter: “Mummy”, “Daddy”, “Nana” and my favourite when he’s just had enough: “let’s go” (something I myself must say 23 times a day to shepherd three children and a husband). And when the mood takes him he will repeat what you’ve just said – the best being “I love you.” But the moments of noise are infrequent and they take you by surprise. The initial euphoria replaced all too quickly by the tinge of sadness that comes with knowing this is a rare event.

Maybe his little head is full of dialogue and one day soon we’ll get to hear it all. But for now we keep going with the speech therapists’ advice:
  • Repeating back any noises he makes.
  • Talking to him like he understands.
  • Not leaving him out of dinner time games and talking.
  • Using Makaton signs wherever we can.
  • Making sure we say the word and back it up with an object of reference where appropriate.
  • Keeping eye contact when I talk to him, pausing to give him chance to make his own reply.
  • Using songs bags and photographs to drive home meaning.

It doesn’t feel like therapy really anymore – not four years in – and there is a chance that it will never make a difference.

Maybe this will be as good as it gets. I hope not as I want, like all parents, to know everything about this child –his thoughts, his hopes and dreams! But more poignant than that I want to stop having to guess the basics - do you like this? Are you cold? Thirsty? Hungry? Where do you hurt?

Silence is not always golden.

But it’s okay. We’ll get by.

Because it is true that a smile can tell a million words.

Thursday, 5 February 2015

Things you do when you are on a diet

I am on a diet.

That's one of the first things you do. You tell everyone you're on a diet.
No I can't finish off your half-chewed Smiley Face, darling. I am on a diet
A sweetener in my tea please pet instead of sugar. I am on a diet.
I can't have a French Fancy mum. I am on a diet.
Listen shop keeper I don't care if your sales of Twirls are down 400%. I am on a diet.

I must have been on 6,286 diets in my time so I am a bit of an expert. Well when I say expert, I mean it in the loosest sense. I haven't actually managed to get rid of that half stone of weight each of my children left behind when they invaded my body like graffiti tag artists marking their turf. Bless them - so creative!