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?


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

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.



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.

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.




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. 



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



Ode to an empty house

You love your kids, but still.

As the front door opens to let the last child out, the peace and freedom gently breezes in.

As the front door closes, you let out a sigh. Your time is now your own. For a few hours at least.

There are things to do, but will it really matter if they don't get done today? Or at all?

Seize the hours and cherish them. Because this is their gift to you.

The chance to dance, without embarrassment, theirs, not yours.

A time to sing, while no-one's listening.

No requests, no demands, nothing that they have to tell you right now, no hunger, no thirst, no loo roll shortages, no bug extermination crises, no weird noises that require immediate investigation, no DVDs to be changed, no worrying smells.

An exploration of rooms uncluttered by children, carefully treading in teen territory too. Who knows what you will find?

A chance to cry, with no-one asking why.

A time to talk, without interruption. To write, when the inspiration takes you. To clean, cook, create or craft.

To leave the house with one bag, and return with many, and all will still be in place.



But after a few hours, it seems too quiet and empty. And you start to listen for the bell or the knock on the door. And welcome them home with a big smile and a hug. And the house is no longer empty, it's full of life, and so it goes until tomorrow.




Today

At one point today I lost the ability to speak. At least in recognisable English. I was trying to talk on the phone at the time to a potential babysitter (hurrah!). I was also burning the latest batch of Brownies (aka reinforcers), looking for chocolate buttons for Smiley, attempting sign language with my son and peering over Angel's shoulder to help with her latest Econometrics assignment. So naturally an assortment of jumbled up words came out together.

BurChocBrentSigmaYes or something like that.

It was a day when I really needed to be a Duracell Bunny.

You may remember that I have decided to desert my station at the kitchen sink, abandon the dishes and go out and fight for my disabled daughter's right to adult services in September. Of course she doesn't actually have a constitutional or legal right to them, but I'm working on that too. Today the ground work started to pay off, with phone calls and emails from representatives from three political parties. All of whom have promised to ask questions in the Irish Parliament for me, on behalf of my daughter and other school leavers.

Result.

Well it's a good start anyway. I'm not stupid enough to think that I'm done already.

Today there was also housework, cooking, the usual 5.30am start, helping Smiley with her toileting, feeding and entertainment, attempting to explain the whole crisis in adult services in one succinct email, making campaign notes, trying to encourage more people to get involved (PLEASE?), talking to my son about his worries, talking to my daughter about hers, collecting him from school, supervising the homework (helped by the Brownies, even though they had that little mishap), oh and an hour of that bendy shit yoga too!

Dinner was spent on here, rewinding the same ten minute Teletubby clip for Smiley, resetting the water plants reminder on my phone every ten minutes, and discussing something (what was it?) about my son's latest game every time he popped in the kitchen.

And I still have the bedtime routines to do. But it felt like a productive day, at least if don't look too hard at the kitchen sink.



To read Parts 1 and 2 of this series, click here.




He's only happy when it rains

It's beautiful day, Mum, he says, as he opens the curtains to reveal a grey sky and teeming rain. I actually don't mind the rain that much, I'd take it over cold weather any time. But still, every time he says that, it presses the big red button in my head marked annoying. I've told him so. But he still does it. Is he just being contrary? I don't think so, his happiness when it's raining seems to be genuine, and he just can't hold back his enthusiasm.



I decided to ask him. And he told me that it's because rain is...

...Life-giving
...Beautiful
...Less bright
...Feels nice
...Sounds good

But best of all my home-loving son likes going out when it's raining. Since I am always keen to leave the house, how could I not love it too! Even if it does mean ruined hair, and gently steaming clothes and equipment on every radiator.

So I'll be praying for a little rain over the long summer holidays, as he'll be happier, and we'll all be able to enjoy a few splashy walks. Whatever works, eh?


My Top 10 Spring Songs for 2015

It's quiet on the blog at the moment, so permit me a little self-indulgence... Every year I make a playlist of songs that I've heard and liked over the past 12 months and Angel puts them on a CD for me to play loudly in the car when I think that no-one's listening. This year she's very busy with her Final Exams and her work as a gymnastics coach, so I will be waiting awhile. In the meantime I thought I'd put them on here instead. Handy for me, and I do love sharing all my favourite finds. And here's a useful guide to the stuff I like, in case you don't want to venture any further down the post:

What I like
Guitar bands
Indie music
Songs that make me feel something

What I don't really like
Obvious auto tuning
Misogynistic lyrics
Rap, house and anything like it

So here's my selection for Spring 2015

1. George Ezra - Blame It on Me




2. Little Green Cars: The John Wayne




3. Sinead O'Connor - Take Me To Church




4. Family of the Year - Hero




5. Joan As Police Woman - Holy City



6. Kasabian - stevie




7. Chris Staples - Dark Side of the Moon




8. Bastille - Flaws




9. St Vincent - Bad Believer




10. Pins - Too Little Too Late



This post was brought to you via dancing around the kitchen,TXFM, Dublin City FM DriveTime, and the need to find something to make housework tolerable. It worked.

Feeling cheerful about the Easter break

I was dreading the thought of the Easter break and two weeks stuck indoors, but luckily it didn't happen like that, and I was able to bring Smiley out almost every day, and watch Netflix or films with my son in the evenings. There were appointments to attend, meetings to go to, bag packing and Zumba to raise funds for Smiley's Club, a trip to Newry, and a visit to an Easter event at Farmleigh, a State-owned period house and garden, on the fringe of Dublin's Phoenix Park. I had to park some way from the house and so discovered a new (to me) and stunning corner of the Park:



There was plenty of giggling as I pushed Smiley along the busy backroads in the Park, but eventually we arrived at Farmleigh. It was mobbed, which is exactly as my daughter likes things: lots going on, lots of people to smile at and beautiful surroundings too.




And best of all there was music, and plenty of it. This duo was our favourite because we could get right up close and see and hear everything.



The day was finished off to perfection with the sharing of a giant sticky chocolate muffin. I am so glad that my daughter loves cake too.

Then today I got a real taste of that holiday feeling when we headed down the country to visit a special needs optician.

It was lovely and calm and quiet, the air was clean, a fresh breeze was blowing across the Curragh plain and sky was this colour.



And there was lots of it.

It was also a day to feel competent. For the first time in about a year, I helped Smiley to use a toilet away from home. Everything went to plan: she let me know that she needed to go, I found a disabled toilet, worked out how to manage in the small space without a hoist, she did the business and I got her off and tidied up without damaging my back. Am proud of both of us.

We even had time for a quick picnic lunch before heading back to the city.

So my reasons to be cheerful are:

  • A successful Easter break with two contented teenagers.
  • A lot achieved.
  • Perfect weather: some rain for my son and some sunshine for my daughter.

How was Easter for you?


Ojos World


Tell me why I don't like meetings

I never really did. During my working life, they always annoyed me, they seemed to exist only to suck valuable time out of the day, and give a captive audience to those who like the sound of their own voice.

But sometimes you spot one that looks interesting and useful.

It being the Easter 'holidays', there was no pressure on me to get children up for school in the mornings and Angel was available to babysit, so when I heard of this local meeting about the future for people with a disability, I decided to go, just to see.  Especially as it had been a week of depressing disability news, neatly summarised in this post by Musings and Chatterings.




I was hoping to learn something new, and I did, from the excellent speaker from Inclusion Ireland, though it wasn't exactly good news. It was all about the Government trying to find ways to save money from the disability sector and force everyone to live their lives according to the latest big idea, instead of looking at people as individuals and trying to meet their individual needs.

There was also an inspirational speech from a friend of mine who helped establish the DCA Warriors Facebook page that helps families to claim an allowance from the Irish State for their children with special needs. This should be easy, given that those families have enough to be doing already, but instead families are forced to complete mountains of paperwork, which often gets 'lost' and then they usually face several refusals and a tortuous appeals process.

The meeting had been called by one our elected representatives, who has a strong interest in disability, and my respect for him grew as the meeting went on and the audience was invited to contribute. You know those events you go to where they ask for questions and there is an embarrassing silence? Well it wasn't like that at all. Hands were raised all over the packed room, including mine, but sadly I had to leave before I could speak. But plenty of other people did, and it was not comfortable listening. There were people there who wanted to complain, offload, make political points, who just wanted to be heard by someone. There was a depressing edge of quiet dignified desperation to many of voices. Though I did identify with one woman who put her point across in less than a minute and received spontaneous applause for it too.

Even though I left early, it was almost midnight before the both teenagers were asleep and I woke on Friday with hair and dishes unwashed, and in a foul mood that lasted for days. It's a long time since I've been in an room so charged with anger, fear, desperation, disappointment and frustration, and I found it emotionally exhausting and frightening. The negativity really sucked me down. Perhaps I too will feel this way in 10 or 20 years time, but I hope not, I can't bear to dwell on it, even though I really felt for all the other families who were there.

What is the future in Ireland for people with a disability? Pretty bleak was the verdict of the people at this meeting. I have to hope that they are wrong.



When your teenage son discovers Netflix

It only took about 6 months, but finally my teenage son is making good use of our year's free supply of Netflix as part of the StreamTeam.

Avatar


Recent research shows that teenagers need and want to spend quality time with their parents - something I've always believed. But it can be difficult when you have very different interests. So I was a bit dubious when my son asked me would I watch the Avatar series with him, especially when I learned that there were 54 episodes. But actually it's become a pleasant nightly routine to sit down with him for a half hour or so. It's easy on the eye, a bit like a Japanese-style Teletubbies for teenagers, but with more exciting adventures, interesting characters, special powers, and a moral undercurrent.



Documentaries


Did you know that Netflix includes access to some of the best nature documentaries ever? I certainly didn't, until my children found them. My son has always been interested in nature - just like his Mammy - but the days of the family gathering around the telly on a Sunday night to see the latest from David Attenborough seem to be long gone, so I was delighted that my son had been seeking out and enjoying many of his best shows, plus some others too, like these:



Films


This is where we are struggling a bit. He wants me to recommend a Morgan Freeman film for the holidays and Netflix has come up with this (fairly limited selection). Now we just need to choose. Would any of you like to suggest which would be the most suitable for a 13 year old boy?



However Netflix hasn't managed to suggest any great films that would help my son improve his attempts at an Australian accent. My first thought was Crocodile Dundee, but sadly it's not there...

Marvel Daredevil


Whatever about the lack of good films on Netflix, the choice of TV series is getting better and better, even for a fussy family like this one. I'm really loving Unbreakable Kimmy Schmidt, it's my go to programme when I'm feeling down, and then there's this.



We're huge Marvel fans in this house and having watched the trailer, I can tell you that if you’re a Marvel fan, you’re going to LOVE this series. It has all the Marvel ingredients that you'd expect: special powers, great action sequences, and the never-ending battle between good and evil.

The date is circled on the calendar and we can't wait!

Disclosure: I have received free Netflix streaming, and a streaming device as part of my membership of the Netflix Stream Team. All opinions expressed in this post are my own. 


Feeling cheerful about World Autism Day



So far my Easter Holidays has been like this:



Rather than this:



That was Easter 2010. The year before our lives changed forever as my son's autism really kicked in in the weeks leading up to his 10th birthday.

You see I believe that autism changes lives in a more fundamental way than other special needs.  And remember I have an 18 year old with severe physical and intellectual difficulties, who also had many complex medical needs when she was small. But I got on with it, and after a tricky start, normal life resumed after a fashion. Everything had to be carefully planned, but with a bit of research and imagination, most things were doable.  But autism is different. And one of the big differences that I see between autism and other special needs is this:

Special needs means you adapt the environment to suit your child.

Autism means you change your life to suit your child.

Take going to the beach as an example.

Wheelchairs and beaches don't mix well: they are very hard to pull across the sand, which also wrecks the moving parts. But you could use an old buggy or use/buy a special beach buggy. Keeping medication and food dry and sand free is another challenge, but it can be done. Perhaps you will only be able to stay for a couple of hours - between toilet breaks - but you can still do it.

A child with autism may simply refuse to go, even if they appeared to it enjoy it previously.  And sometimes no amount of therapy, rewards, threats, persuasion or bribes will change their mind. Push them, force them and you are likely to send them over the edge into meltdown, which is horrible for child and family alike. The autistic child is NOT being difficult. Like all children, they are doing the best that they can. But they experience the world in a very different way, so something about the beach is overwhelming them so much that they cannot cope.

The beach could be...

...too bright in the sun.
...too unpredictable, with children, animals and beach toys hurtling in every direction.
...too uncomfortable underfoot for a child with sensory issues.
...too noisy, with the waves, the gulls and all the sounds made by adults and children.
...too strange, scary and anxiety-inducing.
...too smelly, with the aroma of seaweed and salt.

Whether your autistic child can speak or not, they may be unable to explain what is bothering them. And even if they can, you may not be able to fix it: ear defenders (they block out sound) and sunglasses may not be enough. With other special needs, you can usually spot the problem, and work on a solution.

Even if you do manage to get your unwilling child to the beach they are likely to be miserable, so why would you go. The result? Trips to the beach are no more.

Back to where this post began: the 2015 Easter break so far has been very productive, with lots of phone calls, trips to the supermarket to keep Smiley happy, appointments made - and kept - which means more items crossed off the 'to do' list.  But a holiday it is not.

So I'm glad that World Autism Awareness Day exists, because it just might make more people sit up and listen and suspend judgement on autistic children and adults, and be understating and supportive towards them and their families.  And that's my reason to be cheerful for this week.


Ojos World