Counting down! Sun 19th May 2013

Oh my giddy-whatnots! I don’t think D could be more excited about her birthday tomorrow!

It’s lovely. For so many years, May 20th was just another day to her but that’s no longer the case. She knows she’s still 8 today and 9 from tomorrow. How early she’ll surface tomorrow I’m not sure, recently *yawn* it’s been virtually as soon as the birds start chirruping so…dawn onwards!

Bless her, she has NO idea of what her presents contain, fingers and toes tightly crossed that she’ll like them.

It’s been a day in which I’ve been proud of D and T and how they handled themselves in a busy town, whilst at the same time conscious of just how intolerant other people can be, just because they don’t know or wish to know about autism.

Maybe I noticed it more today because we were going for a meal – at the usual restaurant, usual booth, usual meal choices for T and D – and I wanted everything to be as nice as possible because it was a pre-birthday meal for D. They both did extremely well, despite the (very) rowdy booth next to us, who were very critical of anyone who…wasn’t them basically. T had a few tears but D seemed oblivious to it all, she was there to eat and she definitely enjoyed her food!

It was a relief to get home. T immediately seeking his de-stress area (the trampoline, with a ball), D eager to try out Prism Break (yes, we found it).

The downside to it being Sunday was that homework needed completing. Whereas T is “bash-bish-bosh, lets get this done and out of the way” and usually completes it in very fast time, D is more reluctant, it’s all “too hard work”. We agreed at parents evening that she would write a sentence for her News each week covering what she’d done at the weekend and even though it was started with “On Saturday/Sunday I…”, it still took a good half hour for her to write four words for each day. With protests, with some sounding assistance. It was very difficult to watch how frustrating it was for her, but at the same time, she is doing so well with the reading, it’s knowing that we need to persevere with the writing aspect.

So, homework has eventually been done and the soon-to-be 9 year old has been tucked in. So much has happened in the first 9 years of her life, I wonder what the next 9 will bring?

I hope everyone’s had a good day, comments/RTs/shares welcomed, thanks for reading Jx 😘

Silent Sunday

The beach came to us! Sat 18th May 2013

For ages now, D has been saying “Mumma, when you’ve passed your driving test, we’re going to the beach”. It’s been her focus and unfortunately I’ve had to halt lessons as they’re too expensive. Anyway..

The beach came to us today! It’s taken D most of the day. She loves crafting and the beach has been made with plasticine, Playmobil figures and a sylvanian families chair from a set that she barely plays with. The base is the lid from her plasticine tub so it’s very portable, just the way she likes her toys.

It’s been played with inside and outside, spot the cat in the background!

Tomorrow we’re heading out for a pre-birthday lunch for D, at the restaurant we usually go to, where T and D feel very comfortable. She already knows what she’ll be eating – her “usuals” – and has been rattling off verbatim exactly what she’ll be having every time it’s mentioned. It should be good.

T’s team won 8-2 this morning and he scored a goal! He’s normally in a midfield/defender position (lol, me and the terminology!) but he scored from “first touch”, whatever that meant. Anyway, a tired but happy boy tonight.

Wish I could say the same for D. I started drafting the blog whilst Hubbie took over the evening routine. He slipped over in the bath (he’s ok) but D was very shocked and traumatised. We had about half an hour of wailing and deep hugs before she calmed and she’s still awake, next to me. We’ve talked about happy things to try and take her mind off it but I think it’s going to be a while before she’s comfortable enough to settle. Hopefully this won’t impact on her sleep too much when it arrives *fingers crossed*.

So…an uncertain night ahead, bless her. I hope everyone’s had a good day, comments/RTs/shares as ever welcomed, thanks for reading Jx 😘

“Push For Action” with @Autism

As the Mumma of two children with autism, my thoughts turn to the future daily.

My children aren’t going to be “cured” of autism, their coping strategies will hopefully develop and mature but – as we don’t live in Neverland with Peter Pan – my children will autism will grow up to become adults with autism.

It worries me, it REALLY worries me. As I know it does everyone else. The Government is ever-cutting funding to local services, which means the local councils are having to viciously cut their services and invisible disabilities are invariably suffering because they aren’t necessarily understood and cannot be seen.

This is why I’ve signed up to join the National Autistic Society’s Push For Action campaign and I’d very actively encourage everyone within the autism community to do the same.

Here’s some details of the campaign (taken from an email I received, I’ve removed references to our council for privacy reasons):

“As the perpetual fight to protect our benefits in this country continues, we also need to make sure that support for adults with autism exists outside of the benefits system.

With a law in place – The Autism Act – your local council must do certain things so that everyday support, whether that’s help with laundry, cooking a meal or being diagnosed, is there for those adults when they need it.

Sign up here to see if your local council is doing what it’s supposed to do.

From what I’ve seen, most councils have not done enough. That’s why we’re launching Push For Action.

I caught up with our local campaigns officer, Anna, as the parallels between Who Benefits and our new campaign became clear.
Anna takes a sip of coffee and sighs. I’m used to encountering this kind of frustration when we discuss the impact of Government policy on people with autism.

In the nine years Anna has been supporting people with autism she has seen many changes, and not all of them positive. But I know that her dissatisfaction is mixed with hope – she knows campaigning works.

Our conversation turns to the support some adults need, and a lady called Sally who took part in the Government’s trial assessments for PIP.

“When the assessor asked Sally if she can make her own meals, she said ‘yes’. But she can only make pasta with butter! Sally’s sister had taken more than six weeks to teach her this one meal and she still needs to be prompted and supervised. She’d obviously misinterpreted the question but ended up scoring no points –no wonder people with autism were so worried about those assessments!” The couple beside us turn around as Anna’s voice gets louder.

Anna finishes her coffee, and says she’s off to plan how she will be supporting campaigners push for action across the country.

Anna’s energy is infectious. She gives me hope for change, too.
This year the Government will review whether they, local councils and the NHS are doing enough to turn the Autism Act into action for people in your area. Click here to end the wait..

Thank you

Tom Madders
Head of Campaigns”

Photo reproduced below with permission from the National Autistic Society.

A positive change to routine Fri 17th May 2013

Despite the inner thoughts knocking around in my head today, we have adhered to the routines today, we have to, with two children who rely on these for regulation and reassurance.

With one exception, one that I’m very pleased and proud about.

I picked up a flappy, happy, bouncy D from school (SO excited about her birthday, she’s been telling the lollipop lady, other parents we exchange “good mornings” with etc) and then we went off to meet T.

T had a request, he wanted to meet up with a classmate after school at the shops. We would literally have time to get home, him get changed and then we’d be walking off again.

D was (surprisingly) okay with the chance, she is a girl governed by her belly and the clock but reassurances that she’d eat as soon as we got back and, back in the buggy for her and off we toodled.

On the way, T was asking me when I thought he’d be able to make the walk by himself, his road awareness is generally good (unlike D) but it’s not so much the road that I feel he’s too young for, more the fact that his moods can change at the flick of a switch and he can be too trusting. I’m not ready for that and nor is he…for a while yet.

Fortunately the other child turned up, with his mum and little brother, I did wonder if they would as this was an arrangement the boys had made between themselves at the end of the day. The mum and I hadn’t met before as D finds the mainstream playground environment far too stressful, not to mention the stares that an SN buggy invariably attracts, so drop-offs are strictly at the gates, with T speeding in quickly.

The boys played football together, D mostly sat with the little brother (side-by-side, so cute!) and watched. The child T was meeting is also on the autistic spectrum and his brother is potentially too so his mum and I had plenty to chat about, in between reassuring relevant children at relevant times that all was okay.

T and the other child do seem to have gravitated together since T’s diagnosis, whether intentionally or unintentionally. It was very nice to see.

Obviously this meant that there was another walk home, T by now very tired and hitching a ride on the buggy footplate, much to D’s annoyance!

This evening has been mildly rushed, trying to speed routines up but, luckily, D is buoyed up by her birthday and T on a trophy induced-high so moods – on the whole – have remained positive.

Another week has absolutely flown by, a busy one, hopefully a calmer weekend beckons with elements of bouncy, flappy excitement and someone counts down to her birthday!

I hope everyone’s had a good day, comments/RTs/shares as ever welcomed, thanks for reading Jx 😘

Blogging and personal boundaries

Sometimes I feel constricted by my blog. At other times I’ve grateful for it.

I’ve chosen to blog relatively anonymously for my children. I include pictures to demonstrate that autism cannot be seen, one of my first and favourite posts is The Camera DOES lie, it demonstrates that point effectively (even though I say so myself!). I refer to them by their initials to protect their privacy, as they are growing up, I’m limiting the pictures I do use to mostly head and shoulders shots.

And even though I do so relatively anonymously I received feedback early on from people I knew saying I shouldn’t be including pictures of the children etc, etc. People who might know us but didn’t understand autism. I chose to ignore.

Sometimes there are situations I want to blog, but don’t. Sometimes I feel I NEED to blog, to get that therapeutic release, I don’t. Because it’s not appropriate. I know my personal boundaries.

We received the news late yesterday that a family member is ill, very ill. It’s occupied my thoughts tonight and today. I can’t go into details primarily because it’s early days and also because I’m respecting their privacy.

I’ve been thinking today of implications and timescales, something you automatically do when news like this reaches you. I know I’m being vague but it’s intentional.

Please bear with me Jx

Happiness is… Thurs 16th May 2013

…in our house tonight.

I’m happy because we had a brilliant parents evening meeting for D. Such a difference to the last two years. D has absolutely flourished with the right support and a very empathetic teacher. I honestly cannot praise her enough. The only thing she came up with was asking D to write more at home, something D’s never keen on but she’s agreed to try. From my viewpoint, my priority is that old chestnut of managing her anxieties but I know I’m fortunate that she will tell me…eventually..a lot of the time it is second-guessing though.

D is happy because it’s her birthday on Monday, she is counting down and is so excited. For years, she didn’t connect 20th May as being anything special and the day was just any other to her.

She’s very specific about what she’d like for her birthday, including a lightcore Skylander figure called Shrimp Break. She was very sure this morning, on the way to school that that was its name. I googled it after dropping her off…nothing, I googled once home…nothing. I racked my (tired) brain cells and then looked in T’s Skylander manual. It’s PRISM BREAK!
So now my task (and I have chosen to accept it) is to find one for Monday *whistling the Mission Impossible theme*.

T is still (very) happy about his trophy, watching the Europa League final last night and he’s gone to another game tonight. Football is his life and as long as I get cuddles here and there, it’s okay, that’s his obsession.

Here’s a picture from Tuesday, taken by another parent. If I remove the red eye, T ends up with black marks on his face for some silly reason, so…one proud, sweaty, warm T:

And Hubbie will be happy cos we’re happy. He’ll be soaked, watching the match with T but it’s what they both enjoy and it’s that dad-son time that they both need.

It may all change tomorrow of course, and it probably will. Life feels like a constant game of dominoes, they’re all stacked up and named, but if one falls, they all do. For now, they’re all standing straight and I’ve got to find this little fellow:

I compared myself to a lilac tree in the garden earlier (!),here it is, if anyone would like a read.

I hope everyone’s had a good day, comments/RTs/shares as ever welcomed, thanks for reading Jx 😘

#Prose4T I am a lilac tree..

Today’s #Prose4T (linking up with vevivos.com)is full of metaphors. Full!

To give a bit of background, I am a bit of a purple addict..handbag, FitFlops, sofa, towels…oh yes, purple magpie.

I bought our lilac tree two years ago and the first year obviously it was finding its bearings and rooting down, last year it didn’t do much, what with the near-drought conditions for 5 months and then monsoon-like weather for the next 3, but this year, it’s starting to flower and it’s beautiful, just a stunning colour.

I am a Lilac Tree

See me swaying, gently in the breeze.
Nodding, turning to face the sun.
I am a lilac tree.

The children bounce and play,
Safe in their garden,
I watch over them, happily.
I am a lilac tree.

My blossoms open, rich and fragrant,
Beautiful but just for a while.
See my branches, reaching out.
Watch my leaves grow, see me smile.
I am a lilac tree.

My roots grow underneath, out of sight.
Ever reaching, looking for nurture.
So much of my activity is beneath the surface,
Ever thinking, ever searching for answers to questions unasked.
I am a lilac tree.

The winds batter me, the rains soak me,
I stand my position, tall and strong.
I’ve found my home, my place in the garden,
I’m always here, ever protecting against any wrong.
I am a lilac tree.

Thanks for reading Jx

Back to “our” normal and @Aspiewriter book review Weds 15th May 2013

Sometimes I describe living with autism as being “unpredictably predictable” and it certainly is!

After yesterday’s out-of-routine noisy, busy evening, I wasn’t sure how or even whether D would sleep, but she did sleep, far better than the previous four nights.

After I mentioned the lack of sleep in last night’s blog, a couple of very helpful comments helped me to realise that D’s unsettledness was (probably) due to the changes in the classroom and not related to anything she may have inadvertently viewed, which was a relief.

It seemed to back this theory up as she was back in class yesterday, back into routine and she could see that the class carried on without the child that had left last week. The environment remained positive and it was all ok.

It’s reinforced further to me how much she relies on routine – T is the same – and it’s definitely made me more aware for the future.

And we seem to have our happy D back. The school run this morning was accompanied with Joseph songs and she positively bounced into class.

All fine at pick-up too, she hasn’t chatted that much about her day, apart from to say she’s tired. Settled happily tonight after a bit of arguing with T, they are too alike at times!

T’s had a good day too, he’s still very chuffed about his trophy and slept with it on his pillow last night, it’s remained close by when he’s been sitting down relaxing as well.

I’m including a Bookworm Wednesday recommendation in tonight’s post, a book I’ve enjoyed reading over the last few weeks.

The author is Jeannie Davide-Rivera, who may be familiar on Twitter as @AspieWriter.

I’ve always found Jeannie’s blog posts very insightful and the book was no exception.

Here’s the Amazon link and some information about the book (from Amazon):

Jeannie grew up with autism, but no one around here knew it. Twirling Naked in the Streets will take you on a journey into the mind of a child on the autism spectrum; a child who grows into an adolescent, an adult, and becomes a wife, mother, student, and writer with autism.

This is a gripping memoir of a quirky, weird, but gifted child who grows up never quite finding her niche only to discover at the age of 38 that all the issues, problems, and weirdness she experienced were because she had Asperger’s Syndrome (AS), a form of high-functioning autism.

The tale begins at age three and takes us all the way through her diagnosis. Along the way she explains autism in a way that will have fellow “Aspies” crying tears of joy at being understood, and “neuro-typical” people really starting to grasp the challenges that autistic people face every moment of every day.

I took a few weeks to read the book as I wanted to digest the information and I found it very enlightening. I have always preferred reading real-life experiences rather than a standard text book about the autistic spectrum far more helpful and the fact I already knew of Jeannie made it all the more interesting.

A recommendation from me and a lot of admiration for the woman, wife and mother she is now, her journey has not been easy at times.

This book will appeal to anyone wanting to know more about the autistic spectrum as well as Jeannie’s experiences of growing up without a diagnosis.

So, that’s us, comments/RTs/shares as ever welcomed, thanks for reading Jx 😘

Pettiness amongst proudness

As regular readers will know, last night the family attended a presentation evening hosted by the East Berkshire Football League, in honour of the season just ended.

It was a busy, packed room – as you can imagine – with 7 divisions in the Under 10′s age group to be honoured, Champions, Runners Up and Fair Play awards for each division.

For every player attending last night, it must have been very exciting. Certainly T has been counting down ever since his team were announced as Champions in their league, and even beforehand, as he’d been working out the permutations of every game. A time for pride, a time for players, managers, coaches and players families to enjoy the evening.

The vice-chairman opened the evening and after an intro detailing the numbers of teams and players involved, he mentioned the Respect code of conduct.. Aimed at the children, he emphasised that anyone boo-ing would be asked to leave, some parents would have been wise to take heed.

They didn’t boo, oh no, they weren’t that obvious but the ones sitting behind us made little petty remarks and digs at all the other teams.

On just a player and manager going up to get a Fair Play award…”haha, couldn’t anyone else be bothered to turn up then”.

On a team who had made the decision to all attend dressed in shirts, trousers and club ties (they looked very smart)…”haha, look at them, some have short sleeves, some have long sleeves, they couldn’t even get that right”.

On a team who had very bright kits…”haha, look at the colour of that”.

Now, maybe they’d “enjoyed” themselves too much in the bar beforehand, maybe they were tired, maybe the dreadful weather outside was annoying them but was that showing Respect and Fair Play? I don’t think so.

All those players were deservedly there for a reason, they’d played in the snow, wind and rain, often Sunday and weekend games to complete the fixtures and they earnt every smile, every round of applause, every trophy.

My little man had his trophy next to him on his pillow last night, it stayed with him on the sofa until the school run and they’ll be reunited at the end of end day. He’s proud and justifiably so. I’m proud of him too and every little man who stood on that stage last night. Wish others felt the same.