It’s a matter of taste…..

There has been a spate of comedians mocking disabled children in the last few months. Easy targets or is it something more?

The red-top tabloids seem determined to name and shame benefit cheats, headlines screaming “lotto winners still claiming £xx benefits” and “off work for xx years with a bad back and filmed running a marathon” and then you have the stories of the families with children in double figures, the stories are written in such a way that it implies the parents are proud to receive £xx from the state.
I can understand how these examples can and do annoy people.

But to mock disabled children? What have they done wrong? Being told that your beautiful child has a life-long disability is heart-breaking – literally – and then you pick yourself up and realise if you don’t help your child and “watch their back” there isn’t a great deal of practical help offered, you have to seek it.

Yes, there is a Disability Living Allowance benefit and a Carers Allowance benefit but this does not begin to cover the fact that weighted items (which help regulate sensory issues), SN buggies (which are vital if your child has severe anxiety issues) and other SN items are very very expensive. Employment is scarce anyway so to find a position which would enable you to only work school hours, take time off repeatedly for medical appointments and include emergency time off for illness and anxieties around schooling etc would be miraculous. Many SN children are schooled at home because either the system cannot incorporate them or anxieties are such that they cannot go into school.

I’m digressing and anyone who mocks disabled children is not going to be interested in the day-to-day existence of parenting a SN child, they are looking for a quick and easy laugh.

Then they go home to their families. Do they feel regret for their words as they look in on their sleeping children? Do they consider that the people who have laughed at their “jokes” now have an opinion based on what they have heard? Yes, talk is cheap but words stick.

No matter if there is an apology for any jokes (and there rarely is) the words are already out there.

There is a saying “walk in my shoes” but I’m not offering that to anyone who mocks SN children, they’d only mock further and I don’t want to swap and live their ignorant lives anyway.

An example from a magazine 9/12/2012, it continues…

Letting the mask slip..

From the age of about 12 years old, I’ve worn a “mask”, initially influenced by peer pressure, music and people in the public eye.

Every day, without fail, the mask goes on – the mascara, the eye liner, the lipstick. Concealer too but not foundation so the “mask” has never been a thick one.

When you become a parent, the “mask” is done more rapidly, it becomes lower down on your morning routine but is still accomplished.

When you found out that one of your children has special needs, the “mask” has an addition – sunglasses. They cover up any tears from meetings with health/school professionals. You can put them on and no-one can tell what’s happening underneath.

Last Friday the morning routine was not going well. D was not co-operating and little things that she would do at the first request were taking four or five requests. She was tired, it was the end of her week but it made those few minutes before we had to leave quite frantic. Eventually we left for two school
drop offs and I went to town to pick up some shopping.

It was only when I glanced in a mirror in Starbucks, that I realised that the “mask” was not complete, no eyeliner! Cue inward thoughts similar to that of “The Scream” portrait:

Initial panic thoughts were replaced with “I didn’t bring anything with me” and then I realised no-one had run away screaming, no-one had looked at me as if to say “how dare she be out like that”, my “mask” had slipped in public and it was…okay.

I sat and drank my coffee, then headed off for a nursery pick-up feeling liberated, I could have gone and bought another eye-liner and put it on, but didn’t feel the need to.

The eyeliner was firmly put on before the school runs later though!

Thanks for reading Jx 😘

Wisteria….wisteria

Isn’t it funny how the sight of something can unexpectedly transport you back in time?

In my case, wisteria. I saw this on the school run this morning, all draped gracefully over the front of someone’s house.

Don’t know why I hadn’t noticed it before but …..whoosh! In a flash, my brain took me back to being a nine year old, the summer before my parents split up.

Our house in Epsom was covered in wisteria. I was taken back to a house where a room had been taken over by furniture that my mum was getting together for her new life. Another room where I used to sit on the sofa and be asked separately by my parents who I wanted to live with, a room where – being nine and not really understanding the implications of any answer – I’d tell each of them that I wanted to live with them.

Another room where I used to hear them arguing and then where I’d hear my mum crying.

In the end my dad was awarded custody and he became a single dad with three young daughters. I only found out why he got custody much later.

How strange, that all that came back from seeing one plant. Makes me wonder if subconsciously we furnish our homes and gardens with bits and pieces that remind us of times passed.

Will I have wisteria in my garden? Not sure at the moment..

Music makes my life colourful

This title is borrowed from the motif on one of D’s t-shirts.

Music plays a big part in my life, always has done.

From my teenage years spent taping the Top 40 on Sunday nights, editing out the DJs monologue and the
weekly ritual of TOTP, waiting to see your favourite group – albeit miming – secretly wanting to be in the audience but knowing that the waiting list for tickets was YEARS long!

The school discos, the song you have your first “snog” to, the song that will always remind you of your first relationship break-up.

I was too young to see my favourite group when they were “big” and by the time I was old enough, they’d disbanded *sob* so when they reunited for concerts a couple of years ago, it was a dream come true. We took D (with sound proof headphones!) and because it was the music that she was used to hearing in the house, she was fine. We had seats in the front row so she spent a lot of time drawing!

The children have grown up to enjoy music as much as I do and music lessons play a big part in D’s school – see my blog post “here comes the sun” and T is learning the trumpet – we have strange noises whilst he practices sometimes. I always wanted to learn the saxophone – maybe one day…

The past couple of weeks have been very hard, trying to sort out the referral fiasco, acting as a go-between between GP and paediatric department when all someone had to do what take ownership and do their job!

I hadn’t been sleeping and was throwing up with the anxiety of it all. I did consider going to the doctor for myself and all they would have said is rest and reduce stress, bet you. Practically impossible to do when you are a SN parent.

The one thing I did find helpful was music. I’ve always got my ear worms in en route to pick up D and I found myself listening to the lyrics more and empathising more. I guess the songwriters draw on their own experiences of life, relationships, family etc. It helped.

Hopefully we have now turned a corner in terms of starting to get the additional support that D needs and for me, as long as I’ve got my music and a full battery, I’m okay. Well, more than okay because the group are releasing a new – brand new – album in May and the first song from it is “Brilliant” – and that’s what it’s called too.

Thanks for reading, comments/RTs as ever welcomed Jx 

Expressing her feelings…

I wanted to share this separately to a diary post as I felt it warranted it…

Last year, over the Royal Wedding weekend, my mum was in hospital and for various reasons I was the only daughter available to visit. I spent a large proportion of that weekend hopping on and off buses, being at mum’s bedside and dealing with the aftermath that this change of routine at home brought.

Hubbie was at home with T and D during these times and when I got back from one visit he said that she had been in her room a lot and quite agitated. I went up to see her and noticed that she’d pulled one of her toenails off. She didn’t seem fussed about it and picking and pulling at her finger/ toe nails is one of her anxiety things. She also has a very high pain threshold so I presumed she hadn’t registered quite what she’d done. I put a plaster on it, without making a fuss and it soon grew back.

Whilst she was helping me paint the trellis yesterday, we were both getting paint spots on our feet and whilst I was wiping them off I said to her “oh, your toenail grew back nicely, which one was it?” and she remembered and showed me. I then asked her if she remembered why she’d done it and she said “I missed you, I’m only happy when I’m with you”.

The other day, she was able to say how being called a “baby” because she’s in a SN buggy affected her too. It made her feel cross. Generally though I don’t think she notices the stares, the whispers, the pointing.

It’s times like that, when she’s relaxed and I feel I can broach something like the buggy incident or the toe nail, that I realise how quickly she is maturing. It doesn’t make me quite so worried for the future knowing that as long as she has someone who will listen and she’s willing to talk about things, she can.

Thanks for reading, comments/RTs as ever welcomed Jx 😘

“Touch” and inter-connections

I watched the first episode of “Touch” last night, new episodes in UK are Tuesday evenings, on Sky One.

I was interested in seeing it from the previews, which described the child, Jake, as mute and having been misdiagnosed with severe autism.

Kiefer Sutherland plays the father of Jake and his character’s love for Jake and frustrations at not being able to communicate shine through. As the Mumma of an autistic child who is verbal (apart from moments of extreme anxiety or stress), I cannot imagine how parenting a non-verbal child is. Anyone that does – in fact every special need parent – has my admiration and respect.

I became fascinated by the inter-connection of numbers during last night’s programme, cannot wait for the next episode. Really interested to see how this is carried forward with the grumpy speech therapist character.

The whole programme set me thinking last night and I remembered something which had been dormant for years.

When I was first married to C’s father (first husband) before we had C, we saw a fortune teller on a beachside pier. All crystal ball and reading your palms, paying with notes not coins though!

I went in, not giving anything away but obviously as I was wearing a wedding ring, she spoke of “one child, maybe two more” and also that “within 18 months you would be living in a cul de sac”.

For my (then) husband, she spoke of eventually having his own business.

By the time we were married, I had already had one miscarriage and went on to have another one before successfully carrying C so I always presumed that was the “one child, maybe two more”. Little did I know!!

I didn’t move into a cul de sac but we have a curvy service road at the back of the house. I guess it depends what you want to believe. I spent 16 years in my house before moving – just before D came along.

I do know of someone who went to see a fortune teller whilst she was married to husband number two, who got told she would marry for the third time! I guess if you’re told something like that and unhappy anyway, it might influence your thinking. She didn’t marry again by the way – as yet!

So.. Yes, I did have the one plus two and I’m sort of in a cul de sac and very happily married to Hubbie (number two) – long may it continue!

Whatever influences who we are, how we do things, I don’t know but really interested to see how the “Touch” series progresses.

I perceive the “Touch” title not to be about Jake not wanting to be “touched” but more about the “butterfly effect” – how one small event can set off a chain of other events and all the people effected are inter-connected and touched by an invisible link.

Comments/RTs as ever welcomed Jx 

A tune stuck in my head…

I’ve had a tune dancing around my head for most of the day – a Howard Jones one. One of my sisters was the Howard fan – not me – in fact her first boyfriend and subsequent husband had a Howard haircut – spikes, mullet and all.

This particular section of words was bugging me so much, I decided to find and download the track.

Found out it was “Hide & Seek” and the lyrics dancing around were:

“so she had built her elaborate home, with it’s ups and it’s downs,
It’s rain and it’s sun
She decided that her work, it was done,
Time to have fun.
And found a game to play.

Then as part of the game,
She completely forgot where she’d hidden herself,
And she spent the rest of her life,
trying to find the parts.

Hope you find it in everything, everything that you see”.

Wow! If that is not a subconscious need for me to put on “my oxygen mask” and make more “me” time, I don’t know what is!

And then I listened to another one of his songs “New Song” and found those lyrics quite deep too:

“I’ve been waiting for so long
To come here now and sing this song.
Don’t be fooled by what you see,
Don’t be fooled by what you hear.

This is a song to all my friends,
They take the challenge to their hearts.
Challenging preconceived ideas,
Saying good-bye to long standing fears.

Don’t crack up,
Bend your brain.
See both sides,
Throw off your mental chains.

I don’t wanna be hip and cool,
I don’t wanna play by the rules.
Not under the thumb of the cynical few,
Or laden down by the doom crew.”

That song could be an anthem for me, trying to get awareness for autism out there, against prejudice, discrimination and Government cuts.

New listening experience today, new vigour, thanks Mr Jones!

As ever, happy for comments/RTs etc Jx 

And then I read today’s horoscope (twilight zone time):

Friday, March 23, 2012 – You may be feeling nervous today because things seem to be simultaneously speeding up and slowing down. Naturally, you like the excitement of so much going on, which encourages you to move faster than the legal limit. Even if you enjoy the pace, give your adrenals an opportunity to replenish your energy. Don’t overdraw on your reserves. Breathe deeply and stop what you’re doing for a moment. You’ll feel better once you relax.

You can’t disguise the food…

As is usual, the menfolk came back from their football match (T’s team unfortunately lost 1:0 away) with a mocha for me and something for D.

They normally bring her back what she calls a “doughball cake”, it’s a Costa Rocky Road cupcake and she’ll give away the marshmallows on the top and really enjoy the rest – that’s what baby wipes are made for, after all!

There weren’t any of the cupcakes in today so Hubbie brought her back a chocolate nest cake – choc covered cornflakes with mini eggs on. Yum yum or so you’d think.

D likes cornflakes, she likes chocolate and she likes mini eggs so… shouldn’t be a problem? Wrong. The combination was not right and it did not look right, therefore she wasn’t going to try it.

It made me remember all those programmes and cooking suggestions where you try to get your toddler to try new food by disguising it as a boat or an animal. “Big cook, little cook” was always making food like that. None of that worked for D because it did not LOOK right…why would she want to try a sandwich that looked like a snail? To D, a sandwich is meant to look like a sandwich!

For years she would not eat broken up Easter egg chocolate because the shapes were wrong, she would only eat round chocolate – ie buttons.

So much of D’s food likes and dislikes are based on the sensory aspect of it – for instance, just the sight of jelly will make her physically sick. Interesting to say the least in experiments with cooking at school.

She is happiest eating her foods, that look like …well…food!

Comments/RTs as ever welcomed Jx 

I’m putting on my Oxygen Mask this year…

I don’t know if you are already aware of the “Oxygen Mask Project” and the hashtag #yearoftheoxygenmask?

If not, let me elaborate a bit. It’s a project being run to encourage us all to take a little bit of time out for ourselves, or doing something for ourselves.

Parenting a special needs child is exhausting, I can sometimes spend a whole day running from one thing to other, never actually achieving a great deal but getting through it because the school runs have to be done, the routines need to be kept to and once your children are in bed, that’s when you start thinking about what else needs to be done, and so it goes on.

I’ve had flu this week and I spent the weekend on the sofa, either snuggled up under covers or throwing them off because I was hot or cold and then because Hubbie had to be at work Sunday and football coaching Saturday, it was still me doing the chores, the cooking and everything else albeit at a much slower pace.

It makes you think about just how much of your day is taken up caring for others.

I’ve put on my “oxygen mask” this week and I’m thinking of ways I can take more time for me, or at least enhance the free time that I currently have.

I made time to have a haircut today – nothing radical – but it was “me” time and instead of looking in the mirror and chopping my fringe myself, I let someone else do it.

One of my resolves this year is to stop the childminding from July, this will be a natural end then as one child will leave to start Reception in September – his mother is a school teacher so she has the summer holidays off. I need to think about either something I can do from home during school hours or find a suitable job. Suggestions for the home element would be welcomed please.

I need to make more time for reading – books, blog posts, those weekly magazines that end up at the side of the bed. You can immerse yourself into a well written book and whether you come out of it feeling happy or sad at the end, it’s that time that you’ve taken for you. Reading is so relaxing, I’m so glad my children all enjoy it.

I need to take up those coffee offers when they come in, otherwise they’ll stop.
But at the same time…
I removed a negative element from my life yesterday. The comments, the voicemails dictating what I should not blog about finally got to me. No more.

Little things but they are going to enhance my life and keep me on track.

Comments/RTs as ever welcomed, thanks for reading J x 😘

An Enlightened Society…

Firstly, I want to emphasise that today’s blog post is not about me. For one thing, I’m not old enough and the second point is I would have done something about it. I’m a stronger character – or would I have been if it had happened to me? – and the third being, nowadays there are helplines and organisations that will assist.

I’m going to take you back to the mid-1950′s – “Call the Midwife” and “Darling Buds of May” era. Imagine the hairstyles, the fashions, the elegance. The Second World War had been over for nearly ten years and that community spirit would still have been much in evidence – children playing in the street, everyone knowing and helping each other.

And then imagine the other side of the coin – a generation of women who have seen their husbands, brothers, fathers, uncles, cousins going off to war. Many not returning and no graveside to mourn by. Many returned but severely affected. I don’t think post traumatic stress disorder was recognised in those days. It was stiff upper lip time, be proud to be British and get on with the rest of your life.

In the midst of all of this, we must also remember that anyone who did not “fit in” was sent away, dismissed from public life. Anyone who we would now recognise as having a learning disability would have been institutionalised. Unmarried mothers were sent away to give birth and the authorities were very quick to take babies for adoption if there were doubts that the mother could cope. Family scandals were “swept under the carpet”.

I know this because something happened to a relative of mine. She was raped, aged 12. During this euphoric post-war era. Was it a shell-shocked soldier? Was it a relative? Was it a stranger? I don’t know…but what I do know is that this single shocking event has shaped the rest of her life. And we’re talking 60 years ago.

It was bound to…that feeling of being unclean, having her innocence taken away. Could she have done anything to prevent it? Who could she tell? There was no Childline, no victims support. If she had reported whoever it was, what would have happened? She may have been branded a liar, told she’d led the attacker on and if it had been a family member…who would have believed who?

She has never discussed this and I’m never going to discuss it with her either, it would stir up too many emotions, too many deep-seated feelings that would be potentially dangerous if they surfaced – to her mental state. Her attacker is either long dead or extremely frail now and what evidence would there be?

Knowing that this has happened to her explains a great deal about the way she is, the way she interacts, the way she doesn’t deal with problems but buries them, the way she comfort eats – to such an extent it has seriously endangered her health.

If I could change anything – apart from it never having happened, obviously – I would have changed the fact that she never told anyone. That single brave act may have changed her life so much.

This goes part way to explaining why I refer to my daughter as D, I very rarely publish photos of her and as she approaches puberty, I am so going to be watching out for her.

Comments as ever welcomed. This post was written as part of The Blog Dare but I can assure you, it’s not a dare, it’s a very real event.