Wednesday, 9 July 2014

The very angry foot (that stamps on caterpillars)

In the light of the moon an angry foot lay on a bed.

One Sunday morning the warm sun came up 
and – pop!- out of the bed came the tiny big
and very angry foot.
It started to walk around its home.

On Monday it stood on one broken book.
And it was still angry.

On Tuesday it stood on two Barbies in a car. 
And it was still angry.

On Wednesday it stood on three half built Lego bits.
And it was still angry.

On Thursday it stood on four coloured bricks. 
And it was still angry.

On Friday it stood on five different discarded shoes.
And it was still angry.

On Saturday it stood on one baby, one sensory ball, one set of bells, one pushed over baby stage (with mirror) 

One Pritstick, one dirty nappy, one bath toy and one charger.

That night it had footache! 

The next day was Sunday again. The foot got a binbag and threw in everything left discarded on the floor and after that it felt much better.

Now it didn't feel like a foot any more - and it wasn´t a foot any more. It was a big, fat swollen sore foot!

It wrapped a bandage, like a cocoon, around itself. It stayed on for more than two weeks. Then it placed all the bin-bagged items and more besides on Ebay and made a small fortune. 

Then it made a hole in the cocoon bandage, pushed its way out

into some designer beautiful shoes.

@Sophia Webster 2014 Butterfly Shoes. Expensive like.

Post Comment Love

Tuesday, 1 July 2014

Maintaining your mental health when your life isn't mainstream

In 2001 an unimaginable event happened. My father was murdered. The feelings of raw anguish, sadness and anger were at times all consuming, but they lessened over time and are more like a dull ache today interspersed with random waves of loss. What took much longer to deal with and what surprised me the most in its intensity was the fear.

I was frightened.

I was frightened a lot of the time.
Scared to be alone. Scared to be in a raucous crowd. Scared to talk and think about it. Scared to not talk and think about it. Scared to get up each day and face not just a world where my dad didn't exist anymore, but one where things like that could happen.

The rug had been pulled out from under me.  It was a massive thing. Too big sometimes for my own head. I was either going to sink or I needed to find a way to swim. In our own different ways my family learnt to swim and keep on swimming.

Years later, although a different set of circumstances, I am in a sink or swim situation again. But there is one brutal difference. This time around there are many more things conspiring to drown us.

I use my dad's death as a comparison to highlight just how arduous the battleground of raising a child with special needs can be. I'm quite adept now at swimming and although some days I am just treading water, I am mostly making my way towards dry land. What breaks my heart is that all around me heaps of my SEN sisters (and brothers) are sinking.

Sinking fast.

And they don't need to.

It is no mystery that depression is rife among special needs parents. According to a report by the National Family Caregivers Association between 40-70% of family caregivers show clinically significant symptoms of depression with approximately a quarter to half of these caregivers meeting the diagnostic criteria for major depression. It attributes the feelings of "struggling to make sense of a foreign, chaotic and often lonely world" as a source of the depressive symptoms.

When the causes of stress in special needs parenting were examined in a study in the Journal of Pediatric Psychology, high on the list were doctor or therapy appointments, medical treatments, hospitalisations, school issues, integrating the child's needs into the family routine, watching their child in pain, worrying about the child's vulnerability and explaining the health problems to those outside the family.

The researchers also cited that this stress could be intervened upon with supportive measures. 

This study made no mention of sleep. Sleep is often scant when a child has additional needs due to a mixture of medical, behavioural and psychological reasons. Studies have shown that even partial sleep deprivation has a significant effect on mood. University of Pennsylvania researchers found that subjects who were limited to only 4.5 hours of sleep a night for one week reported feeling more stressed, angry, sad, and mentally exhausted.

When the subjects resumed normal sleep, they reported a dramatic improvement in mood.

Antidepressants are too often handed out as a "cure all". Yet writing a prescription is not enough. It is like sticking a plaster on a gunshot wound. Special needs parents want to be able to manage, they want to be able to cope, they want to be empowered to do this.

They want to swim not sink.

Alas too often the system fails to buoy us up and instead conspires to add some concrete boots into the mix.

Why? Cost issues? The belief that we are looking to swindle the state out of vital pennies from the central pot? That there is only so much to go around and these children are getting more than their fair share?

Carers UK says that people providing high levels of care are twice as likely to become permanently sick or disabled than the general population, with 625,000 people suffering mental and physical ill health as a direct consequence of the stress and physical demands of caring.

It also estimates that carers save the UK economy 119 billion each year - an average of £18,473 per carer. 

Many families have to reach a crisis or breaking point before any care packages are put in place.

But isn't prevention better than cure?

The priority for Public Health England, the agency set up by the Department of Health to protect and improve the nation’s health and to address inequalities, is to reduce the burden of disease and disability in life by focusing on preventing and recovering from the conditions with the greatest impact, including anxiety and depression.

Do special needs parents count? 

I know each family copes in different ways and every child is different but nearly four years in, I believe the following is key in helping to prevent depression and mental illness among our ranks (and I suspect this list is the mere tip of the iceberg):
  • We need one healthcare professional overseeing and advocating for the family's well being. Support does exist in different guises from the social worker and health visitor to Portage and the community nursing team. Yet their job is to put out fires once they have started in their own little rooms of the house, not to help you navigate through without the fires starting in the first place.
  • We need access to the right information. This would help dispel the myths surrounding the educational statementing process. There are many horror stories about statementing and SEN reform that make parents anxious before the process has even begun. Most of the time it is seamless and there is a good system in place. More information on new reforms can be found here
  • Other aspects of the system need to be simplified. Local authority social services departments have a duty under the Children Act to assess a 'child in need', including children who are disabled. Yet getting assessed does not mean any of your needs will actually be met. There are too many stories of families not being able to access respite/short breaks unless they can prove they are in "emotional turmoil" and "emotional distress". Wouldn't it be better to offer these services to prevent this distress in the first place. Stop making us jump through hoops.
  • Lifting and back pain needs to be addressed. This is a massive issue for special needs parents. The charity Backcare says that back pain "doesn't kill but it tortures". At the very least carers should have access to lifting advice and physiotherapy exercises for core strength training as they are going to need it. There is a Disabled Facilities Grant that carers can apply for to make their home more accessible yet just one occupational therapist makes the decision (whereas a statement involves numerous healthcare reports) in a one-hour assessment. It is a long drawn out process that is not for the fainthearted.
  • Families should be helped to get back to a "new normal" as soon as possible. Many parents cannot work as there is no adequate childcare out there for their complex children. Many lose their jobs and houses as a result. A group of bloggers are now involved in a Parliamentary Inquiry on the subject and more information can be found here
  • More support groups like SWAN UK should exist to help families learn how to cope, share information and not feel so alone.
The best swimmers are those that can relax and feel in control in the water. We lose our buoyancy once we panic. Adjusting to life with a child with additional needs is like trying to swim when you are scared of the water. It is not being able to see land for the obstacles. It is about every day trying to not give up and go under. 

Add to all of this the fact that when we do get to the edge of the water, instead of finding a helping hand we are all too often greeted by a big fat palm in our face pushing us back in.

It shouldn't be sink or swim. We too want the chance to float for a bit and enjoy the water.

Gabe says: "Let's get swimming"

Monday, 23 June 2014

The me before we

It is not very often that I watch something on TV that makes me stop in my tracks and evaluate my life (probably because I like dirge like Revenge and 90210), but this actually happened to me last week. I can't even remember the programme nor the character. Just what the character did.

They pottered downstairs mid morning and announced that they were going back to bed with their cup of tea to watch telly?
How? What? WHAT? 

It made me remember that I once could do this. Hell I could stay in bed and watch a DVD, read four magazines, half a book, roll into the bath and back out into a bar.

To have an extra hour in bed in the morning now requires artful negotiation not beyond the likes of Obama in a Chinese trade meeting. You see there are now three small people that own and control me more masterfully than any parent, teacher or boss before them.

Yes - I still get to do "me" things but there is a rigid premeditated aura about them. There is no spontaneous "I think today I'll nip and have a mooch around Harrods" or "I think I'll catch that new band in Camden Lock". It's more "Yay, I'm in Tesco by myself."

Most days you don't care that you have become a watered down version of yourself, that you've took your foot of the gas career-wise, but then other days it smarts like hell.

I was once me and I managed to remain a me whilst marrying the he.
As delicious as motherhood is, the whole master of your destiny thing ends the minute that tiny hand wraps itself around your finger and just can't let go. Destinies are then as tightly entwined as those little digits. You can't make any decision no matter how trivial without thinking about the ramifications on them. Even if it's as mundane was taking them out in the rain as you've ran out of loo roll.

All three come with their own individual needs and they can be legion. Days can blur into packed lunch-making, baby-feeding, nappy-changing chaos. I wouldn't have it any other way. It's a beautiful, annoying, knackering, fulfilling sort of busy.

But things are slowly starting to change. Liam and Erin are getting older and with it more independent and Gabriel starts his special school for four days in September (and full time the year after). It is a mark in the sand the day your youngest starts school as the next chapter of your life is allowed to begin. But I guess many flounder and ponder on what words this new chapter will hold.

And I will be the same. Where once I juggled and muddled through, there will be time. The house could be clean, there might be clean towels on loop and I guess there is no excuse to not make it to the gym every now and again.

But I don't want to waste this new chapter of life either. I want to make my days count somehow if that is not too cheesy.

Yet where to begin?

This weekend I found a little bit of that me again - she's been there all along - a bit squashed amid the wife, the mummy, the special needs parent, the part-time worker, the therapist, shopper, the cleaner, the load the washing machine-dryer-repeat magician.

Did I mention the conference was
sponsored by a wine company?
You see I attended the Britmums Live Conference. A place were 700 "social influencers" got together to debate issues like feminism, blogging, social media. the evolving role of technology and why little babies are like little pissed people. I knew no one, but I felt like I knew plenty - just from reading their blogs, magazine pieces and "chatting" on Twitter. I wasn't Liam, Erin and Gabriel's mum. I was Alison. Me.

Each of the women (and the daddy bloggers) I met at Britmums were brimming with ideas, ideals and plans for the future. Whether it was finishing that book this summer, starting a new business, going back to work, taking a year off. I met and heard from people who were bereaved, juggling special children, battling illnesses or watching loved ones fight diseases.

All had their individual crosses to bear, but they were trying to not let them weigh them down. No one was resting on their laurels and waiting for life to give them a break. Instead, they were pulling on their boxing gloves and punching it in the face.

I want to punch some faces too and remember again that there is a me behind the we.

Thanks to the lovely and amazing bloggers who made me feel like a new friend. Check these out if you get a chance:

Thursday, 12 June 2014

How to turn the World Cup to your advantage

And so it has begun. The date we have all been waiting for with bated breath. That we have been dreaming about since Euro 2012.
Okay.. yes... I am being sarcastic.

I mean I like football I really do. I grew up in a house where football wasn't just a matter of life and death - it was much more important than that. My dad toured Europe with Liverpool in its hey day and I've lived and breathed the highs and lows of the beautiful game.

Yet anything in excess tends to turn my stomach (even Double Deckers).
So once I've got over the novelty of cold beer and a BBQ mid-week I have a feeling the tournament is going to leave me feeling a bit tormented.

Ever the resourceful person, I've come with some ways I can turn this around to my advantage (sssh don't tell the husband).

This is how the World Cup is going to work in my favour this year....

More sleep

If the baby wakes just as we are going to sleep - I will not fret. If he wakes with the larks - I won't sweat it. I'll just whisper the words: "what games you got saved on Tivo?" and my man will be up like a shot. The distant roar of a football crowd can be my lullaby back to sleep. Aces.

Catch up on crap TV

Before we had kids we wouldn't think twice about watching TV in separate rooms for long periods of the night. We would have got to chat over dinner or before we turned the lights off. Now if we don't sit on a sofa together for some of the time between 8-10pm we would literally be like Norris and Emily Bishop. The downside is that it is really rare we watch something we both like. How can this man not like Grey's Anatomy, Revenge and Made in Chelsea. I mean really! But now it is guilt-free Orange is the New Black catch up (and yes I am a genius for saving it). I am a-coming Binky - all will be fine now I am here.

Father's day taken care of

I'm not a big fan of Father's Day as the husband is hard enough to buy for. There is only so much Molten Brown bubble bath and Percy Pigs this man can take. This year though I can offer to cook a roast dinner and then take the kids out so he can gorge himself on foreign finishes.

You can eat crap food

Two words people BAR SNACKS. Hell yes snacks galore. I might be watching Secret Eaters in the t'other room but man I am doing it in style - pass me the Doritos baby and save me some Onion Rings. Another beer - oh okay why not. It is the World Cup afterall.

Spook them out for fun

Swallow some key facts and randomly throw them into conversation - especially when his mates are around. You will amaze. Stuff like at last we have goal line technology and getting them to guess who the most expensive player in the World Cup is (Gabe's growth hormone mate Lionel Messi with a market value of 139,6 million euros). High five guys. I am a cool wife (who is just nicking a beer and going to watch Kramer versus Kramer - less weeping!)

There will be some thrills and spills

I actually love to hate it when I get sucked into the football frenzy. It is quite tense. I end up pacing. And swearing. And having mini heart attacks. Penalties are like horror films - you just can't watch but watch you do. I still remember the euphoria of Euro 2000 and beating the Netherlands and the epic Germany qualifier game a year later. But you know I am getting too old for all this hoo ha these days.

*What's that Mr Gorg - there is a great goal? No I'm busy. There is a penalty in the box? I'm really not interested. Who's arguing with the ref? I'm watching Marrying Harry. Rooney is about to score... oh man, okay. Budge up....I guess Piper will have to wait another 4 weeks*

Gabe says: "So me and you are hiding in the garden for the next four weeks. Cool.
One thing why is Daddy crying?"

Wednesday, 11 June 2014

What makes the man (and the woman)?

Can you just watch the baby a second?
Will you just get him that toy?
Can you push him on the swing?
Watch he doesn't roll off the bed while I run his bath?
Yes I'll read with you in a minute after the baby is fed.
Can you pass me that cream?
Can you run and get the wipes?
Would you mind distracting him to see if he'll stop crying?
I'm sorry I shouted I was really tired because the baby was up all night.
What did you say again?
Sorry you can't sit on my lap as I am holding the baby and he's asleep.
Will you just play with him a minute while I make a quick call?
Yes we'll finish that game when he has settled a bit.

When you have a baby these are the things you may say all too often to the older siblings. It is all part and parcel of life with young children - the youngest can take centre stage for a while. Yet in a blink of an eye they are holding their own, getting their own toys, making their own mischief - becoming a little person in their own right. The playing fields level out once more.

Not so when that sibling has additional needs. The playing fields are always going to remain skewed. And three and a half years on we are still asking the above of them, often neglecting their requirements, relying on their help at times, and needing them to be patient. All the time praying they understand.

I know we have worked hard (so so hard) to try and make sure that Gabriel's needs do not eclipse that of his older brother and sister. We go to great lengths to ensure all three have their moment in the sun.

But being the fallible creatures that we are - we can sometimes get it wrong.

At just seven and six years old, we know we ask a lot of them. Stuff that is above and beyond. We have no choice.

This week is Carers Week.

Meet two of the cutest, most caring, carers in town. They pitch in of their accord, run numerous errands with the merest of grumbles and the biggest of smiles. They pick up the book for the 400th time off the floor and laugh as it's thrown at their head once more. They sing him songs when he is too tired to eat but eat he must. They take a step back from their own demands when things are getting stressful, when they know he has cried long into the night. There is always a grin, a high five, tickle or a rub of his head.

This boy is beyond lucky. In them he has his biggest champions, his shining knights. They see his world as wonderful - full of trips on a bus, swimming pools, days out, cuddles and play aplenty. They are proud of his achievements and although they acknowledge he is different and his path ahead is unknown, they only see the adventures and triumphs to come.

They believe in him. They believe one day all his battles will be won.

They are not alone. There are hundreds of thousands of siblings just like them. Brothers and sisters that have to grow up that little bit faster, are expected to do more for themselves whilst also offering a helping hand at the drop of a hat to a member of their family less able than them.

If you asked me about caring, I would say it was this: to adore without seeking acknowledgement; to toil without needing reward; to focus on all the magnificent minutiae and try and pay no heed to the glaring bleak. Also to keep seeing that bigger picture when you feel like shouting "hey, what about me?"

It is not always going to be so innocent in this house. There will be times when they will rally, rage and roar "it's not fair". But we'll cross that bridge when we get there. For now, my children know what it feels like to carry an innocent smile in their pocket cherished like a first kiss. And that adversity, affliction and suffering is only a part of a story that is also spilling with encouragement, pleasure, cheer and success.

If you can fill the unforgiving minute
    With sixty seconds’ worth of distance run,   
Yours is the Earth and everything that’s in it,   
    And—which is more—you’ll be a Man, my son!
Rudyard Kipling 1865–1936

Gabe says: "Okay which jokers thought dressing me like a sugar puff was good fun.
Don't you know nets do nothing for my hair."  
Related posts:
Dear Teacher
He ain't heavy

3 Children and It

Wednesday, 4 June 2014

Yo, it's fine

This motherhood malarkey is tough at times. You long for a cute little baby to dress up and take for walks in sunny parks - then before you know it you are exhausted from all that they need. They kind of need feeding, washing, educating (stuff like that!). I am almost eight years in so I now consider myself an expert, qualified, someone who wings it on a daily basis. So in my advice-giving mode I would just like to say:

Yo, it's fine...
  • accidentally forget to change the baby's nappy for five hours so it looks like a blow up pillow
  • be a bit (a lot) bored pushing the children on the swing
  • say you have a work deadline so your man has to do bath time and then get a bit lost in Facebook
  • remember a school party ten minutes before it starts and have to nip to Tesco for a card and ten pounds cash back
  • serve beans on toast every once and a while 
  • laugh when the children jump on your husband as he walks through the door begging him to play on the trampoline *so long sucker*
  • Febreze the uniforms after you forgot to get them out of the washing basket all weekend
  • say "yes that's fine" when they have eaten one pea and half a boiled potato because you just can't be bothered with the argument sometimes
  • hide the My Little fecking Pony DVD in the bin
  • start counting down the minutes to bedtime from 3.30pm tea time
  • do the school run in your gym gear and then change your mind and go home and eat jam on toast
  • let them watch back to back Scooby Doo while you watch Made in Chelsea in the other room
  • secretly check out Twitter whilst listening to them read before bed
  • borrow money from their piggy bank to pay for your take away/the window cleaner
  • bribe the children with chocolate buttons so they don't tell daddy that you swore in the car (again!)
  • bribe the children with chocolate buttons so they don't tell daddy that you gave them beans on toast (again!)
  • finish off their homework at 8.35am the morning it's due in
  • ensure you get the Friday feeling by cracking open a beer tinnie at six o'clock - makes bath time way more fun
  • totally rip this off from Glamour's Hey, it's okay *ssh no one tell them - can't face another scandal. I've only just recovered from the Robbie stalker claims*

Me relaxing before children

Me now relaxing with little friends (or something like it)*

* This was after I started the bicycle pump therapy where someone comes in every day and pumps you up a little bit more - highly recommended if you want feel like poo and to look at old clothes and weep for fun like. All is aces.


Friday, 30 May 2014

Bloggers are just gegs

Word of the week is geg.

I am holding my hands up in the air.
And I'm waving them like I just don't care.
Because I couldn't care less in fact that I am one of the biggest gegs in the history of gegdom.

What the hell is she going on about you may ask?
Has she been midday drinking again you may wonder?
And if you are from Liverpool you are probably nodding your head and saying: Yes love you are indeed one mega geg alright!

Geg is one of those wondrous words that only exist within the boundaries of the city I grew up in. Words such as boss, sound and antwacky that you inherit as part of your language as easily as the lyrics to I Will Survive and We are Family.

It is also one of those words that you can't explain to normal non-Scouse people. Some of the hilarious attempts from Urban Dictionary include:
  • Meaning to rudely interrupt/join in a conversation without being invited. Originates from Liverpool, England. "Geg out, you geg-in." "Do I smell geg-fried rice?"
  • Someone who goes to something they weren't actually invited to. Someone who butts into, or who is listening to a conversation. Someone who tags along. Can be used as a noun or verb- "gegging in" "Is it okay if I geg with you at that party tonight?" "Tony was definitely gegging into our conversation before" "Jess is such a geg"
  • When a person butts into a conversation uninvited or follows a group without being asked they are a "geg". "Geg out!" is often used to tell someone to leave the conversation/group.
    Geg Out Damien!, Can You Smell Geg?
But believe me when I tell you that if you are a blogger you are a gegger. Fact. Why?

1. We are always gegging in on twitter

If you are a blogger, you have to use social media otherwise no poor fool would read your stuff apart from your mum and sister (and sometimes they beg you to stop. Ally, give it a rest. I'd rather watch Corrie). Twitter seems to be the easiest way to build up followers but man you have to work it. You have to engage and as you don't really know anyone at first you basically just have to butt into all manner of conversations and yes you do feel like a dick.

Twitter person #1: So yeah I'm having a dinner party shall I serve salmon or sushi?
Twitter person #2: I always order in - gives more time to prepare the wine and dress the house.
Twitter person #1: Of course I am ordering in. The Butter Posh Buffet looks homemade. Think I'll go for lobster.
Me: Could just order McDonalds hahaha
Me: Haha
Me: Ha
*end of twitter conversation*
Over time though you needle out the other gegs that enjoy a good geg and don't mind you gegging in at all.
2. We like a geg at people's houses
Or children, clothes, days out, dinner, inside of cupboards and the coffee that someone drank last Tuesday. We just love gegging at all aspects of someone else's life. It is ace. You went for a walk in the park and saw dog poo in the shape of a magical mirror. Awesome. Let me make a brew and I'll have a read - I hope you took pictures. Bloggers (and I include myself) just love gegging in on your daughter's first birthday, that date night that went so wrong (but was so funny) and how your attempts at potty training are reducing you to tears (chin up; have some gin).
3. We geg in at events
Would you turn up to an event where you know no one, spend weeks thinking about what to wear to look casual and look forward to "meeting" hundreds of people you actually know more about than your own friends. You won't be arrested for knowing that some stranger has three children called Polly, Penny and Peter and she loves eating Pot Noodle whilst listening to Pet Shop Boys. In fact you will be applauded for remembering as many random facts about people as possible.
You: Hello, what's your name?
Random person at Britmums: It's Mummy Does Dancing in Devon
You: Oh yes! Lovely to meet you. How is the cat now after she swallowed that Peppa pig head? And the twins? Have they settled into pre-school? It was terrible that you and your husband had that row about whether Gogglebox is good or bad or we watch it as there is basically sh*t all on TV anymore. Go on tell more about your sister's new husband? Do you want a Snowball? I know that's your fav drink especially when the moon is three quarters high in the sky.
4. We like knowing all the geg
There was another name for bloggers back in the day and they used to spend too long hanging out their washing and leaning over fences. We are basically nosey holes. We like to know stuff. And we like to tell people stuff. I don't care if you'd rather change sixteen nappies in a row than read about my child's latest antics because I am going to tell you anyway.
Me: Guess what my little girl can nearly do the splits.
Blogger #1: Amaze. My little boy can nearly do a forward roll.
Blogger #2: I wrote a similar piece about how nearly doing stuff is better than doing stuff. Makes them more rounded.
Blogger #3: Epic. Look at my new cushions.
Me: Guess what my little girl can nearly do the splits a bit more.
So there you have it. All the latest geg on the word geg. I am now going to share this post on geg everywhere so other people can geg in on it too.
Gabe says: "Mum come and sit here. I can't believe my eyeballs.
This is a boss place to sit and get all the geg!"