Friday, April 24, 2015

Undiagnosed children grow up to be undiagnosed adults

And sometimes they live happily ever after. They really do. Because undiagnosed may not mean complex medical problems or disabilities. Sometimes all an undiagnosed child needs is love and a little extra support and they will grow up to lead independent fulfilling lives. For others the future is more uncertain. Tragically some children have such severe difficulties that they never make it to adulthood, and on undiagnosed children's day, we should also remember those families and their enduring grief.


In between there are the children like my daughter who overcome the worst of their medical problems and make it to 18, but with their differences intact. What now? Smiley has been at the best school in the world for more than ten years: she has been given as much time, care, attention, effort, expertise and genuine affection as she needed to give her the best chance to fulfil her potential.



And she has done that. In spades. Despite her severe physical and intellectual difficulties. But in the eyes of the system she is a burden, a drain on tax payers.

I don't see it like that. My daughter spreads joy wherever she goes, and she supports the economy by creating jobs: for carers, for speech therapists, nurses, doctors, psychologists, teachers, administrators, occupational therapists, equipment manufacturers. A whole army of people are employed and contributing to the economy because of her.

Yet no-one sees that. In Ireland there is no statutory obligation on the State to support an adult with additional needs, so families are back to fighting once again to get the services that are essential for their children. But now parents are older and tired. Years of caring often has serious health consequences, made worse by lack of interest from society, and a patronising attitude from many of those who should be helping.

Being an undiagnosed adult means that my daughter is stared at wherever she goes. Young children wonder why she is in a buggy or wheelchair. Adults turn when she shrieks and smiles with delight . Often they smile back, and those are the good times.

Being an undiagnosed adult means that families have few places to go to for support. There is nothing in Ireland. There is the wonderful SWAN UK, but it mostly focuses on children.



Being an undiagnosed adult in a wheelchair means that activities and trips out are difficult. Many buildings are inaccessible, including our dentist, orthodontist, and part of the GP surgery, not to mention many cafes, shops, beaches and country walks. My daughter loves swimming, but it is so difficult and tiring for me that we rarely go. If she needs the toilet, we find that many disabled toilets are too small, too dirty, locked, or used as storage. And even if we can get in, almost none in Ireland have Changing Places with the proper hoists and trolleys that many adults need to be able to use them.

Being an undiagnosed adult means that your parents will be thinking about the future and what will happen after they die, and hoping that they won't, as the options are all pretty depressing.

Being an undiagnosed adult means that you deserve as rewarding and fulfilling a life as everyone else. And I will be fighting for exactly that for my wonderful daughter.




Written for Undiagnosed Children's Day, on Friday 24th April.


Thursday, April 23, 2015

Treats for me and other reasons to be cheerful

Life continues on, it's not always fun, and going sober has not improved things very much. So even though I'm stupidly busy, I'm still going to do my reasons to be cheerful and probably another post tomorrow too. Because I promised.

A change of plan


Sadly my dance class was cancelled, so a trip to the supermarket and a brisk walk in the Botanic Gardens with my 'camera' was the order of the day instead, especially as it's due to rain tomorrow. More like this on instagram.


Symmetry


I love the contrast between the sculpture and the real ferns

Temptation in the gym


Back to temptation again, and not being able to resist it. All it took was another class to be relocated to an actual school gym, and a few spare minutes. I was transported back 40 years, when being in a gym meant doing gymnastics. So with no hesitation I sidled to the back and over onto my hands I went. And discovered that I can still do a handstand! I was quite impressed.

Another bag


Perhaps it's my version of a mid-life crisis, because I never really cared about bags before. Yet here I am, with a whole collection, and all from the same company. You see I always hated bags where you have to root around to find anything, and stuff gets dirty and damaged or wet. Not with Mia Tui bags though, and so I found myself buying another one last week when I saw that it was being discontinued and sold off at a 40% discount.


It's really soft, it has a bottle holder, the zip closes fully over, and it has a choice of short or long straps for different wearing options. Possibly my favourite so far. And a real treat for me.

More reasons to be cheerful below.


Ojos World



Wednesday, April 22, 2015

Alcohol and I: a trial separation

We're had a long relationship, alcohol and I, with lots of ups and downs. But today I have to announce that we're going for a trial separation.

Nothing to do with the health police who have been out in force this week targeting middle aged women like me, who previously enjoyed a glass of wine or two in the evenings.

No, it just feels as though we're no longer compatible and, *whispers*, we may have fallen out of love.

I never expected this to happen: I presumed that I would sail through the grim menopausal years with a glass of Chardonnay in hand, and sip Merlot on a balcony somewhere warm through a golden retirement. But it's all gone wrong. And it started so well. Well, kinda.

You see the demon drink and I go way back. Probably before most of you were born. As a teenager, alcohol was the magic wand that transformed me from a shy, gawky, unpopular, self-conscious young girl to someone who was, well, not. Or so I thought.

Life took on a rosy angostura hue. Occasionally alcohol did cause a few problems, but I didn't like that, and over time I drank less. Then I had kids, and cut back even more, especially when I began to see the harm that excessive drinking could cause in others.

But I still liked a drop of wine once the kids were in bed. Even this time last year, I thought I'd be be dancing glass in hand down the byways of my life forever.

I was wrong.

In the last six months or so, I've lost the taste for it. Even when I'm sipping something special in front of the fire, I no longer feel relaxed. I no longer feel good. The next morning it makes me tired and grumpy. And it gives me heartburn. And I want to set a good example for my teenage son: I really really don't want him to think that alcohol is the solution to any of his problems.

So since Christmas, I've gradually been cutting down, and now I've stopped completely. Our trial separation has begun. I don't know how long it will last, or whether we'll get back together for special occasions. I've no rules like that. Because it's hard, you see, it's not like giving up smoking.

Smoking? What was that?

I barely remember the existence of cigarettes now. There are very few reminders. I rarely see people smoke, there are no ads, no packets on display in the shops. Nothing apart from the occasional furtive light up in shop doorways.

But alcohol is everywhere. Not just the ads, but #winetime on twitter, Movies and Booze on Friday afternoon radio, billboards, people talk about drinking, write about drinking, it's still everywhere.

So we'll see.

It's not as though I feel transformed either. I don't feel any happier and I still have bad days. I've put on weight as well, because chocolate has more calories than wine. But I am coping better with the children. The trial separation is working for them. So I may have to make it permanent.





NOTE: After I wrote this, I found a very similar piece in this Saturday's Irish Independent, reprinted from the Daily Telegraph. But I didn't copy it, honest!



Monday, April 20, 2015

Lithium

Trapped

Isolated

Miserable

Exploited

Ignored

Exhausted

Angry

Hopeless

Desperate

Useless

Ungrateful

Pathetic

Guilty

I've taken to calling myself the Care Bot, because that is my role now. If only I could get rid of those pesky feelings and paste on that happy face all the time and just keep functioning. Especially as so many families are dealing with so much more. I just wish the upcoming referendum was about putting lithium in the water. Because I'd be voting yes.

Sunday, April 19, 2015

What to do with your gym ball

I cheered when I found a new page on Facebook with free exercise videos today. And it made me happy. Another way to avoid getting hideously fat and flabby over the long summer staycation.

But a lot of them feature gym balls. And I have a past with gym balls. I have owned them. I've even used them with Smiley. And when you work out what to do with them, they seem quite effective.

But I have a problem with gym balls. They're large, round and slippery. So when you've finished your little fitness routine, what then? Where do you put them for all those hours when you're not actually using them?

Put them on the floor and they slide everywhere.

Put them on a shelf and they roll down.

Pu them in the attic and they get covered in dust.

Put them in the garage and you forget all about them.

So how do you store them?

Are there giant boxes that keep them tidy? And take up half a room...

Are there rapid inflate/deflate balls that can be squashed flat and shoved in a drawer.

Or do you just stick a very large pin in them, and chuck them in the bin?

Sorry ball, you had it coming.




Friday, April 17, 2015

How a 15 year old actress with Dyspraxia and Dyslexia became a film screenwriter

Author Diney B was one of the first people that I 'met' on-line through her then blog, and we've kept in touch ever since on twitter. So I was thrilled to read about her 15 year old daughter Ellie, and the film that she's trying to make. I really wanted to support it, so this is Ellie's story by her Mum, and it features dyspraxia, dyslexia and a bit of autism on the side.



Ellie has said from a very young age that she felt ‘different’. She was sure that something ‘had happened’ to her at birth because she ‘felt like an odd piece of a jig saw puzzle’. She just knew. 

And we all, yes all denied her that perfectly valid personal insight by thinking AND telling her that she was being awkward, difficult, challenging, spoilt, emotional and ridiculous, always feeling something wasn’t ‘right’ with her wiring indeed! What a little diva! I feel emotional now even admitting that I lost my temper with her at times. When she had so many friendship fallouts over the years I once said to her that it must be her who indeed WAS weird. I blush in that knowledge, now that I know.

She has always been a performer, and loved appearing on stage from age 3 where she played No 1 pumpkin at the harvest festival then progressing to the eponymous Little Angel nativity play when she was 5. Her drama teacher advised us, after that stellar performance, that we just had to ensure she carried on performing, either musically or acting, as she had an immense natural stage presence. We just knew that this was going to be her path, perhaps more than her hobby. We could see that this was where she was happiest and most confident – and talented. That epiphany was to guide us forwards into the world of film and theatre. (And near financial ruin!)

She felt bullied. I’ve felt she was being bullied on many occasions, but now I realise that, although many incidents were totally nasty and uncalled for, most of the incidents in her life were the normal cut and thrust of lippy or confident children jostling and shoving for a pivotal place in the pecking order of the classroom. I now realise that very often it was actually Ellie’s perception of what the girls (some boys too) were saying or doing that was causing the feeling of being bullied and made fun of. I’ve ended that sentence on a preposition but I’m writing as I feel!

All Ellie wanted was to have a ‘best friend’ who would love her like she loved them, and she did love quite a few friends from the age of 3 onwards. She wanted them to show loyalty and not to suddenly be nasty, ignore her, turn away from her, to be someone she could trust wouldn’t let her down when she needed a friend in that chaotic, stressful world of growing up. Sadly, that isn’t real life and she was hurt time and time again. 

Now I realise that she didn’t have the ability to get over the hurt she felt, it cut her right to the heart and she has sobbed so many rivers over the years. The only times Ellie has been truly happy and not felt threatened by the capriciousness of other children has been at home secure with us, or on stage or film, playing a role usually with adults who always like and respect her, as she is a very enchanting, funny, bright and talented young lady. 

This is my beautiful and loving daughter, Ellie. She was (in January, 2015, at the age of 15) diagnosed as severely Dyspraxic and Dyslexic. And you know what? She was delighted, liberated from the fears and turmoil of just knowing that there was something not quite right in her ‘wiring,’ as she put it. It’s something she can’t help, something that she, and we, have to work with and through and around. Together we are doing just that and her future seems even brighter now that we all understand it’s ok if she doesn’t like tight skinny jeans (she looks amazing in them too!!), can’t read or spell as well as she would like, will only eat a selection of (mostly healthy) foods, doesn’t see her untidy bedroom (that could be a teenage vision also, but hers is definitely a vision that just doesn’t register the mess), whose motor skills are such that she can’t process what she has heard quickly enough to write it down in her Year 10 GCSE classes.  Her short term memory is diabolical but……so what! I’m so cool with that now. And now that she understands herself, her confidence with friends has gone through the roof and she is working on being tolerant and accepting that not everyone has to be the same as her (hating smoking, drinking, the usual teenage rebellious acts are not for her – now I’m proud of her taking that stance!)

My annoyance is why the hell did no-one flag this up before now?!!! She has changed schools a number of times, but that isn’t a valid excuse for the professionals who indeed said to me on many occasions ‘are you sure it’s not just Ellie’s perception that she is being ignored/left out/made to feel so alone?’

 Surely that is one of the signs of a child with Dyspraxia? Then my girl would have been saved years of stress worrying that she was a disappointment to us, worrying daily that friends were going to be nasty to her, worrying that she couldn’t read as much as she wanted…… and yet her school reports have always been excellent. It’s now that the workload has cranked up for GCSE that she started to have a meltdown over the work, but her school have now been wonderful and educational support is all there.

So, Ellie, aged 15, shortly after her diagnoses, wrote a short film. It’s called ‘Taciturn’ and I think it’s moving, heart felt and bloody marvellous!  It is about being a teen, trying to fit in, trying to be moral and standing up for others (in this film it’s her sister and a girl in her class who are autistic and being picked on). I decided that it deserved to be brought to life and I’m co producing it, the first I’ve ever done, but I’ve been on so many film sets with Ellie that I’ve made great contacts and picked up what needs to be done, plus my background is in events management. We are shooting on July 27th 2015 for 4 days!!

I’d love you to take a look at our Indiegogo campaign, where you will meet Ellie herself and she will tell you all about her film. After all, it’s her work - and boy does it come from her heart.

I think that this is an amazing story, and if you'd like to find out more and see Ellie talk about her film project, and perhaps support it, please click on the link below. 



Thursday, April 16, 2015

Reasons to be cheerful 16.4.15

Just a short post today, I'm hoping that the weather is helping everyone to feel cheerful, despite the desperately sad news from Scotland.

I appear to be healthy


Recent blood tests failed to find anything wrong with me, and even my cholesterol is now within safe limits for the first time in about 5 years. That's down to the dreaded statins, which I resisted taking for ages, especially as thought they were causing my vertigo, but it seems the culprit for that is probably the even more dreaded menopause. So I've given in, and they've been added to the growing pile of pills I apparently need to keep going...

A first


Smiley grabbed my arm as I sat next to her, and I worked out that it was because she wanted me to change her video. Since then the school has reported the same thing. I'm delighted that she is getting more proactively demanding.

School


The return to school has gone much more smoothly than I expected, and I've been enjoying an empty house some mornings.

The Tax Return


Even more dreaded in this house than the menopause. But today I got stuck in, and I have most of it completed. I couldn't have done it without a break from all the stress of the past few months.


Ojos World