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.

It is a yo-yo sort of existence that you live when your child is breaking the mold and trying to be all "hey look at me I'm one of a kind". Angelina Jolie did recently say "different is good" after all.

Parenting itself is like that too with its highs and lows, but throw a complex child into the mix and it is like the hammed up version of the movie. Our children tend to over egg their parts, sometimes things are a bit more theatrical (the divas). Why have a cold when you can have pneumonia. Let’s not even get started on their entourages!

Children aside, there are many other scenarios that make us want to scream and weep (or both at the same time). It could be marriage troubles, money worries, illnesses (ours or a loved one) or just a general sense that your life is not matching up to your expectations.  

Our current coping and attitude to the hand we've been dealt will depend on a host of external factors. Our mood can be interchangeable in a single day. It just takes one tiny straw that can break the camel's back. And often we don't know it until all the crap scatters across the floor. Once the straw is all swept up and the camel is taken to the vet to be glued, put down, sent to the dog food factory (bah I am giving up on this analogy) then we may feel ready to crack on again with a smile on our face.

This often leaves us in a difficult situation with friends and family. In the four years since my little boy with global development delay was born, I have led them all on a bit of a merry dance. What bothered me yesterday is of no concern today. What I said was fine last week, is now a worry. How can people keep up?

In the early days when my boy was a baby and things looked bleak, my Mum called many a time asking if I was okay. I’d immediately feel guilty for letting off a bit of steam with the person that knows me best because, more often than not, I probably felt better the moment I had finished my tirade. The last thing I wanted was for her to keep on worrying - especially if the biggest thing on my mind since was what to wear to a cousin’s christening.

With friends it is the same. I might have once got tearful at the end of a night out about what the future held. Now I’m conscious that they might be watching me warily as a gathering draws to a close in case I break down again (or maybe the feckers are just wondering where is open to get chips).

The point is we all need, at some point in our lives, to let go of pent up emotion - whether it is bubbling fear, overwhelming sadness or rising anxiety.  It is healthy. However, as much as we need to do this we might not want to show our nearest and dearest how deep we sometimes fall because I don’t think they realise how good we are at scrabbling back up.

So how do we scream in peace? Without frightening those we love, without leaving dents on their hearts, without having to convince them over and over that we now feel okay when we do inevitably feel okay again?

That these falls are just blips on our journey to strengthening, healing, equanimity or whatever.

I have been a big fan of internet support groups for a while. Through them I have met loads of families in similar situations to my own. Friends who get it when I say "this is horrible" one day but moan about something mundane the next (like there were no Toastie loaves left in Tesco. Outrage). 

Patient support groups have come a long way from the days when people just debated side effects. There are huge communities sharing stories - the positive and the negatives - and bonding over shared experiences.

And for parents you can raise any topic - no matter how bizarre (do you dunk your penis anyone?) on groups like Mumsnet and you'll have a swarm of people offering a helping hand or a shoulder to cry on.

Sometimes the urge to reach out in the dark to someone and say "I am hurting over here" or "I am fed up of this” can be overwhelming and terrifying. Sometimes it is hard to articulate or even put a finger on what is hurting. Sometimes you might be embarrassed or even scathing of weirdos in the computer knowing your business. But I say it's sometimes worth a punt. Because sometimes you will feel better. Sometimes you will connect. Sometimes it will give you chance to off load some of the pressure without worrying family and friends who might watch you with misgiving for weeks afterwards.

Other things can help with these urges to scream that we all have in our lifetime - exercise, wine, chocolate, flicking two fingers at the annoying fart in the post office. Go, try anything that might help you claw back some happiness in any shape and form.

But for me the biggest thing by far that has helped is time. Time to process. Time to accept. Time to heal. Time to learn how to handle the extremes of emotions. And time to become wise enough to know that I need to scream. That by screaming I become stronger.

So now when I do scream, I know I’ll find that much needed peace.

Gabe says: "I am screaming internally as this is a golden egg
and I specifically asked for silver."

P.S. Note to self: just go and buy some new shoes you lazy scruff bag.

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!

Tuesday, 27 January 2015

What are we so scared of?

I paid it absolutely no heed at first. I didn't even click into the story when I saw the article floating around Facebook about the adults with learning problems being refused entry into the Legoland Discovery Centre in Manchester.

At the time I gave it a passing 'Oh that's a shame' and then went on to nose at some random posts about someone's dinner or to giggle at the photo of my mate's pile of mismatched socks. To be fair I was probably more outraged by the mismatched sock mystery than I was about these men.

Then a blog post was shared on a support group I access asking What does the future now hold? by the marvellous Innocent Charms Chats that made me stop short and think.

The gist of the story is that a 40-year-old man with a mental age of seven was turned away from the attraction due to a policy of refusing entry to adults without children. Also in another case, a 20-year-old man with learning disabilities and his carer were also refused entry.

I then read the comments on the blog post. 
I then read the news story in the Manchester Evening News
I then read the comments on the news story itself. 
I then read The Mail online version of the story.
I then read the comments on that news story.
I then read the thread on Mumsnet.

I then thought oh sh*t Crikey!

Tuesday, 20 January 2015

Kids, things that are just not on

Dear children,

I once had to write Daddy a letter to remind him of the rules, which he was flouting far too frequently for my liking. It is with sad regret that I now feel that I have no choice but to also remind you three of your contractual obligations as well. When I signed up to be your parent I did so with certain caveats. A simple ruling system was set up to be adhered to at all times. Lack of understanding and generally being small children are not deemed to be suitable reasons for non adherence.

As previously stated:
  • These rules are communicated telepathically.
  • They are also subject to change at any given whim.
  • The list will be ever growing and infinite.
  • They can be made up on the spot.