Month: Jun 2012

Just over a week ago my husband and I separated.  It was my decision (hence my previous posts about making changes in my life) and it was a long time coming, but this didn’t make it any less upsetting.  And following the day our marriage ended I had the difficult task of telling my immediate family and closest friends what had happened.  I dreaded these conversations, which were heavy with emotion … but little did I know this was the easy part.

Over the next few days it occurred to me that I needed to start telling people beyond my close circle.  But I had no idea how to bring it up.  It’s one hell of a conversation-stopper.  And that’s when I started considering the possibility of announcing my separation on Facebook.

I have read and heard a lot of negative opinions about people who live their lives through Facebook – those who document their lives in photos and status updates.  But for me Facebook has always been a lifeline.  I love sharing the hilarious things my children do and say.  I love that I have a whole community of friends who can pool their knowledge and wisdom on any problem I have, from what to do when my children are ill, to how to fix my laptop keyboard.  I love seeing photos of my friends’ families.  I love enjoying reading about the good things that happen in my friends’ lives.  Mostly I love the fact that, no matter how lonely I might feel, or no matter how difficult it is to get a babysitter so I can go out, real friends are only a click away.

So in a way it felt natural to let my Facebook friends know that I had ended my marriage.  It felt almost deceitful to continue chatting with them online and posting comments to their status updates whilst pretending everything in my world was normal.  I agonised over my decision for a couple of days.  Announcing the end of a marriage on Facebook was not something to rush into.  But I knew what I wanted to do.  It was important to me that my wider circle of friends knew how dramatically my world had changed, and this was the easiest way to do it.  My final decision came one evening when I was feeling tearful and low, and feeling the need to talk about what I was going through.

In the end I chose an indirect way of telling people.  A status saying “I’ve ended my marriage” seemed too callous.  So instead I wrote a status update saying “Think it’s just hit me how much harder life is going to become”.  Usually I am irritated by people who write statuses clearly designed to make others respond with “What’s wrong?  What’s happened?” but in this case I felt it was justified.  The friends who cared enough to ask were the friends I wanted to tell.  The inevitable questions came quickly, and so I replied with the truth.  And it was done.  I had announced the end of my marriage on Facebook.

And how pleased I am that I did.  The messages of support and love were completely overwhelming.  Each time someone sent me an encouraging message I felt a bit stronger and a bit more able to cope with my new reality.  I’m sure not many of these people knew the true impact of the few minutes they had spent sending me their good wishes, but the cumulative effect was tremendous.  Maybe you’ll see what I mean if I show you just a selection of the comments I received:

We are all here for you.

You’re such a strong person.

I’m here if you need any advice.

You know where to find me.

You are such an amazing person.

I have found it easier on my own.

It does get easier.

You’re stronger than you think.

Big hugs.

Let me know if you need to talk.

Really praying life gives you a break.

Your two beautiful children will keep you strong.

You deserve to be happy.

I think you are incredibly courageous.

I’m always on the end of a phone.

The hardest part is over.

I hope you’re OK.

Sending lots of love.

Been thinking of you.

You are amazing.

You will be the best Momma there ever was.

Sweetie, always here for you.

You’ve kicked the arse of adversity in the past.

The comments above are all genuine quotes from messages I have received on Facebook in the last few days, and each of these comments was sent by a different person.  Some are from friends I speak to daily, some from people I haven’t seen for 15 years.  Alone, each message is kind and gives me a boost.  Cumulatively they make me feel I can take on the world.  If this many people have faith in me and my ability to cope; if this many people think I’ve got what it takes to be a great Mum; if this many people are only a click away when I’m feeling low – how can I possibly fail?

So.  To Status Or Not To Status?  My answer to this question is clear.  As another wise friend also commented on Facebook: “Week One is the hardest”.  Well if that’s the case, I’m laughing.  Because I have survived Week One in tact, thanks to the love, kindness and support I received after one little status update.  Thank G-d for Facebook.

Grant me the serenity to accept the things I cannot change;
Courage to change the things I can;
And wisdom to know the difference.

(Serenity Prayer by Reinhold Niebuhr, 1934)

I’m going to use today’s post to tell you about some really nice things that have happened to me.

Firstly, to put it into context, I’m currently going through what I guess could be described as A Difficult Time.  Health, work, money – it’s just all a bit stressful right now.  So when A Nice Thing happens, it means a lot.

Nice Thing No 1.

As I’ve mentioned in a previous post, my son J is obsessed with shop logos.  Same goes for adverts on TV.  He has a few that he loves (can’t get enough of those meerkats) but his absolute favourite is the advert for the insurance company Direct Line.  So deep is his love that for his third birthday in March the only cake he would even consider having was a Direct Line cake.  My very talented friend V made a beautiful edible replica of the red Direct Line telephone which was almost too brilliant to eat.  Almost.

Now, when J is feeling stressed or anxious, one of the things that calms him down is sitting at the laptop together and doing a Google image search for Direct Line. On one of these occasions, a few weeks ago, we came across a photo of a little boy holding a copy of the Direct Line phone that looked just like the real thing.  We clicked on the photo and found ourselves looking at a website made by a man about his family.  The little boy was his son.  I clicked the “email me” button and apologetically asked the man where he had found this wonderful toy.

A few days later I received a reply.  The photo was, he said, over ten years old and the phone was long gone.  However – surprise – the man told me he actually works for Direct Line, and would ask whether there were any more of the phones around.  Nearly a month went by and I heard nothing.  Quite frankly I’d forgotten about him. Then out of the blue I received another email: “Hi there!  Good news!  We’ve finally tracked down one of the phones!  Can you give me your address so we can send it to J?”

I had confirmation that the phone was posted today and will arrive tomorrow.  I can’t wait to see J’s face.  Of course the cynical amongst you will comment that Direct Line are obviously good at public relations.  But I choose to see this as the kindness of a stranger.  The man didn’t have a big box of the phones under his desk, waiting to be posted out to anyone that asked.  It took him weeks to track the phone down.  The email trail shows me that he went from department to department – asking, nagging, expressing a wish to provide a treat for a little boy with autism.  He didn’t need to do it, but he did.  So there we have it: Nice Thing No 1.

Nice Thing No 2.

I have come across an excellent charity who provide iPads for autistic children and schools in return for old mobile phones.  iPads have been shown to be wonderful resources for children on the autistic spectrum, helping them to develop their communication skills, their co-ordination, their language … and *all* I need to do is send them 165 old mobile phones.  So last week I duly sent an email to everyone I know, and posted a plea on my Facebook.  Lots of people have pledged phones to me and are asking in their workplaces, so I’m hopeful, though so far I’ve only received four.

Out of the blue, I received a Facebook message from a friend.  She had been speaking to her Mum (who I know well) and another mutual friend about how much they would love to help.  She asked whether I would object to them organising a fund-raising event to buy J his own iPad?  Would I object??  How could I possibly object?  It was one of the kindest, most selfless offers I’ve ever received.  Rather than object though, I did ask whether I could change the focus.  Whilst it would be fantastic for J to have an iPad, what I really want is to turn his bedroom into a calm, welcoming sensory space, tailored specifically to his needs.  I asked how they would feel about raising funds for this instead, as it would be completely beyond my means without some financial assistance.  Very quickly I received a reply from my friend – and she didn’t only readily agree to the suggestion but had even taken the time to do some preliminary research into suppliers of sensory equipment.

They will be discussing what the fundraising event will be in due course (watch this space!) but I am just so incredibly grateful for these three people who wanted to do something nice for my little boy.  The kindness of friends should never be underestimated.

I once knew someone who had a fridge magnet that said “It’s nice to be important but it’s more important to be nice”.  I secretly scorned these words.  At the time I was embarking on a new career, had just bought a house, and was moving up in the world.  Now, quite a few years later, I understand exactly how true those words are.  The kindness of friends and the kindness of a stranger have been more important to me than they could ever know.

Right now I am feeling limited, frustrated, irritated – downright pissed off, to be honest – by the incompetence of others.  You’re going to need to read my previous post “Accepting Limits” to know what I’m talking about in this one.

So having spent a painful couple of hours on the phone to the nincompoop (great word huh?) at Job Centre Plus on Wednesday, yesterday I received a letter from them which I’ve only just got around to opening.  In it is a 26-page document, which details all the answers I gave the nincompoop.  It states that I have until 6th July to check the answers and provide the missing information.

Hang on … missing information?  How can anything be missing?  I answered every question in detail: explaining, spelling, explaining again.

So here’s the source of my pissed-offness.  It’s full of mistakes.  Why ask me a question if you’re going to totally ignore my answer?  I specifically told Mr N C Poop that I bought my house on 13th August 2006, so why did he type in 21st April 2009?  I took the time to spell the name of my GP, so why is it spelled wrong on the form?  The form agrees that I am caring for someone with a disability, but why does it say he does not receive DLA when I clearly said that he does?  The list goes on.  He’s typed in the wrong start date for my own DLA.  He’s spelled another name wrong.  After asking me who my mortgage lender is, he’s chosen not to enter it in to the form (which is information I am now being told to provide by 6th July OR ELSE).  And worst of all – after the whole discussion about my Primary Immune Deficiency and the weekly antibody replacement therapy I receive, without which I’d probably die – I am stunned to read “Specialist treatment: None”.

Aaaaaaaaargh.

So now I have to type a response, providing the”missing information”, trying to explain yet again what my condition is and what specialist treatment I receive.  I feel about ready to give up.

And here’s the thing.  Without wanting to brag (for more on bragging see my previous post “Embracing Limits?”) I am of above-average intelligence.  I went to an excellent school and achieved First Class Honours in my degree.  I am a qualified teacher, and have post-graduate qualifications.  I have an abundance of common sense.  So if I’m struggling, how on earth is Jane Average supposed to manage?  I asked myself the same question when I was filling in the 40-page form to claim Disability Living Allowance for my son.  The questions were complex and confusing, and the form took me three weeks to complete.

I am not trying to claim anything to which I am not fully entitled, yet I am meeting barriers and difficulties at every stage.  It doesn’t only take intelligence to answer the questions and complete the forms – it also takes confidence in one’s own ability to challenge supposed authorities, for whom it is in the job description to speak in a patronising tone and make people feel guilty for wanting what’s rightfully theirs.

So to any Sun and Daily Mail readers who like to wax lyrical about chavs “sponging off the state” I have this to say: TRY IT.  Do you have any idea how difficult it is to sponge??  Believe me, I wouldn’t be forcing myself to see this through if I felt I had any other option.

So far in this fledgling blog I’ve written about accepting our own limitations whilst supporting and encouraging others.  But today my right to claim what’s mine, and my chance to support my family, have very nearly been limited by one person’s complete incompetence.

OK rant over.  I’d better get on with writing my response to be sure they receive it by 6th July.

Dear Mr Poop …

I wonder why it’s OK for me to point out my children’s limitations but not the ways they excel?

When I tell people that my son, J is autistic, or that my daughter, L, is tiny for her age and was very slow to start walking, this is OK.  It’s allowed.  The usual response is for the listener to then try to make me feel better (about something that didn’t actually make me feel bad in the first place) by saying you’d never know there was anything “wrong” with J; that L knows the best things come in small packages.  This conversation is socially acceptable – no-one is left feeling threatened by my children’s supposed shortcomings, and the other person can be happy they have done a Good Thing by telling me I don’t need to worry.

However, my children are both also exceptional in their abilities.  J can identify 15 different shapes and can tell you the difference between a pentagon, hexagon and octagon.  He flummoxed his cousin when he asked her to draw a rhombus.  He recognises all numbers and letters, and can name every planet in the solar system.  He is obsessed with shop signs and logos and recognises dozens, if not hundreds of them.  A drive down the High Street is J’s perfect trip out: “I see McDonalds, I see B&Q, I see Sainsbury’s, I see Pizza Hut …” is the running commentary from the back seat.  How people react to me telling them this depends on the context in which I present it.  Am I telling them one of J’s autistic traits, or am I telling them my son is gifted and highly intelligent?  The former is acceptable.  The latter seems to make others, especially other parents, feel uncomfortable.*

But it seems to be with L that I am most expected to stay quiet about her incredible gifts.  She has absolutely extraordinary conversational abilities.  Her vocabulary is outstanding, and she sounds more like a 6-year-old than a 3-year-old in her sentence structure and topics of conversation.  And sometimes it’s more like talking to an 80-year-old!  The other day she proudly told me she’d done a wee on her potty: “… and I didn’t even need to hold your hand, even though I was a bit anxious.  Do you think Daddy will be proud of me?”  She has a sophisticated and mature sense-of-humour, has an interest in what is happening in the world around her, and asks insightful and thought-provoking questions.  In fact she meets most of the criteria on Mensa’s “gifted child checklist” (http://www.mensa.org.uk/cgi-bin/item.cgi?id=525)

Just as I am concerned about J’s needs being met when he starts school, I am equally concerned about L.  I want her to be stretched and challenged and supported to be the best she can be.  I am worried that she may struggle socially as children her own age baffle her when they do not reply to her complex conversation.  But mostly I stay quiet about this.  I know that when, on occasion, I have broached the subject, the unspoken reaction has usually been “Pushy parent.  Jewish mother.  Biased.”  I’ve even had to restrain myself from typing apologies and justifications for the way I have spoken about L here.*

Why is it seen as simply stating facts for me to point out my children’s limitations, but bragging for me to explain the ways they excel?  And isn’t this utterly representative of a much wider picture?  Too often we’re too quick to point out our own failings and those of others.  We get so caught up in our limitations that they become all we see.  So many of us struggle to know how to accept a compliment.

I once taught a group of teenagers and asked them to write their name at the top of a sheet of paper, followed by three things they liked about themselves.  They then passed the papers around and had to each write something they liked about the person named at the top.  They got their own papers back, complete with a list of compliments written underneath.  The experience was a revelation for some of them.  They had never had their strengths pointed out by their peers and I could see them visibly growing with pride and pleasure.  Even more telling was the difficulty many of them had in writing the things they liked about themselves – some simply could not think of three things.  If I’d asked them to write three things they disliked, I have a feeling it would have been a different story.

It’s indisputable that we need to accept our own and others’ limits, and be kind and tolerant and supportive of them.  But we also need to embrace our strengths.  Encourage your friends to talk about the great things they, and their children can do.  My children are an example of the limits and strengths within all of us.  It isn’t until we accept, and yes, embrace, both ends of the scale that we can be truly happy.

* I would like to point out that I also have many wonderful friends, who are parents themselves, and who accept J & L for who they are, gifts and talents included!

My condition (CVID) is disabling.

I have a disability.

I am disabled.

Why is there such a stigma around saying this?  “Disabled” isn’t a dirty word, and it isn’t an insult, it’s just a fact.  My ability to do some things has been reduced, therefore I am dis-abled.  I have some official recognition of this fact – I receive Disability Living Allowance and used to have a blue parking badge.

For the first few years after my diagnosis (and for many years before) I was obsessed with proving to others that I really was ill.  My problem was that I never really look ill.  There’s a reason for this: when YOU get a bug your antibodies recognise it and create new antibodies that are specifically designed to fight that particular bug.  Once the bug has been killed, different parts of your immune system march in and effectively consume the bug.  This “warfare” going on inside you is what makes you look and feel ill.  However, I’m different.  I don’t make antibodies, so I can walk around with a serious infection whilst looking absolutely fine – no warfare going on in my body.*

The problem I always had was that I didn’t look ill or “disabled” and so no-one knew I had limitations unless I specifically told them.  I remember once parking in a disabled parking space at the station (having displayed my blue badge) and as I was walking from my car a man from the minicab office came out.  “Oi!” he shouted at me.  “You’ve got to be disabled to park there!”  I replied “I am disabled actually” and carried on walking.  “Oh really?” came the reply.  “Yeah, you bloody look it”.  Thank G-d my Mum was with me: “Wait here” she hissed through gritted teeth, and went marching up to the cab office.  I have no idea what she said to the man, but I do know that my Mum is a force to be reckoned with when she’s pushed!

It’s now 13 years since I was diagnosed and I still struggle with balancing the need to be treated equally with the need for acceptance of my limitations.  Only last week I had a coughing fit at the checkout in Sainsbury’s.  My coughing fits are a sight to behold – a deafening, hacking cough that leaves me breathless, doubled over and bright red in the face.  Oh and usually coughing up yellow stuff.  Sorry – too graphic?  Anyway, I am well used to being given a wide berth when these start, but during the Sainsbury’s incident a mother actually moved her child away from me.  Everyone in the line behind me started muttering and shuffling backwards, but I didn’t have any breath left to tell them they weren’t going to catch anything from me and I don’t smoke 40 a day.  I was left embarassed, apologetic, and feeling like I couldn’t get back to the sanctuary of my car quickly enough.

And as chance would have it, it turns out my son also has a hidden disability.  My 3-year-old little boy, J, has autism.  We are still waiting for the formal diagnosis to say exactly where he is on the spectrum, but my suspicion is that it will probably turn out to be Aspergers.  He looks just like any other boy his age, and at first glance usually behaves like others his age too.  So when he suddenly has a meltdown in the supermarket (they just adore my family in Sainsbury’s!) it is very galling for me to have people glaring and tutting at us.  I am desperate to explain to people that he is screaming hysterically on the floor because last time we were here I bought him a magazine, so he has come to expect that as we walk through the door, and can’t understand why things didn’t happen as he’d planned.  Or that he is spinning in circles with his hands over his ears bumping into people because he has gone into sensory overload and can’t take the tills beeping, people talking, babies crying, fluorescent lights buzzing, trollies squeaking, phones ringing noise.  “Don’t judge my little boy” I want to say.  “He’s not being naughty.  He has a disability“.  But I don’t.  Instead I sit down on the floor next to him in the middle of the cheese aisle, and I hold him close to me and put my hands over his ears, and get his favourite laminated picture out of my bag so he has something else to focus on.  And then we carry on shopping.

I once had a conversation with a man who had Multiple Sclerosis and used a wheelchair.  He described his experience of feeling invisible, and of people seeing the wheelchair and nothing else.  No-one expected anything of him, and people were constantly surprised at his abilities.  We compared it to my experience (and now J’s experience too) of people being surprised at our limitations.  We pondered whether it was better to have a visible disability or a hidden one, but ended our conversation none the wiser.

My condition (CVID) is disabling.

I have a disability.

I am disabled.

But sometimes I think I’d be much more able, less limited, with just a little patience and acceptance from strangers.

* Thank you to my fellow CVID friend L.M. for her explanation of why I don’t look ill when I am ill!