“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.

What’s in a number…

Numbers….we’re surrounded by them. They dictate our lives, even before we’re born:
“your baby is due on….”, “at 32 weeks of pregnancy, your baby should be xx length” and at the ultrasound scans the head is measured etc.

Once your baby is born, there are more numbers: the birth weight, the length, the head circumference. And then the pressure starts: is your baby growing to his/her line on the growth chart? Are they holding their head unsupported at the right age? Rolling over? Crawling? Pulling themselves up? Babbling?
Boom! Pressure to keep up, to conform to the norm.

Your child starts nursery (having had those Health Visitor checks between birth and now) with the boxes ticked for the “milestones”. You are given some forms before nursery starts to complete: is your child potty trained? Drinking from a cup or beaker? Can they dress themselves? Can they count from 1 to 3?

And then someone notices something isn’t “right” at nursery. Your child is not “conforming” – they prefer to play by themselves, almost obsessively: they lack social skills: their speech is delayed. You start the “process” to a potential diagnosis, not quite understanding where it will lead.

You reach your destination: A diagnosis of Autism. You are told that your child’s social skills and awareness are YEARS below their actual age.

You mentally tear up that bit of paper that says what your child should be doing by now, you start again.

You accept that whilst your child might be taller and older looking for their age, their awareness of the world around them is far far less. You start to worry like you have never worried before about the future.

You learn to ignore the “averages”, the “stats”, the numbers.

You realise that you will always love your child with Autism no matter what.

You take pride in their accomplishments that other people would simply brush aside (for my D, this can be as simple a thing as taking a trip to the shops without bolting and remaining nicely in her SN buggy – her “safe” place, her sanctuary).

You look forward to your child’s birthday and try not to compare, to think what might have been.

You remain determined to raise Autism awareness for each and every person and their loved ones.

You forget about conforming to the numbers.

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

Contamination alert! Fri 24th May 2013

Our half term break started a day early today, unintentionally, with both T and D off school. T with a very sore throat, D’s with the snuffles that have been threatening all week.

Her school are very particular about students not being in if they have coughs or colds, due to the fact that germs can be so easily spread. I always remember during D’s first term in her SN school, one of the TA’s told me that one day in a previous term they’d had 7 children off from class with stomach upsets…in a class of 8!

It’s not been all bad though, they do seem to have been sensitive with each other, I guess because they’ve both felt poorly and without enough energy to fester at each other as they would normally.

D took to her crafts, as she does when she needs to self-soothe and self-regulate and made some dolls, partly using a kit she’d been given for her birthday:

Hopefully their restful (ish) day has given them both a head start in banishing the germs sooner. They were both so unbelievably tired this week that I’m not surprised they surcumbed.

I shared some Family Days Out money-saving ideas earlier from MoneySupermarket.com click here to read. Worth a look if any excursions are planned during the break.

So, that’s us. A week of highs and lows, of fun and tears. Yes please to half term!

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

Family Days Out offers with MoneySupermarket.com

Another Bank Holiday and half term break is looming and, like many parents, I’m thinking where and how to amuse the children next week.

An important aspect, in this current economic climate, is cost and this is why I was pleased to receive this information from MoneySupermarket.com which contains details of money saving offers for Family Days Out all over the country.

Here’s some information:

With the Spring bank holiday weekend looming, it can be hard to make your mind up how to keep the family entertained for that extra day with an exciting trip.

With family budgets stretched further than ever, it can be expensive taking the family out for the day, so we’ve come up with some great offers to help you make the most of Spring bank holiday without breaking the bank!

In the below infographic you’ll find a variety of suggestions for great days out all over the country to help you find somewhere for that perfect family day out. We’ve also revealed the results of a survey we carried out in which we asked over 70 parenting bloggers about their family habits for days out.

To get the great deals featured in the infographic below, or for further information, visit our Deals and Vouchers channel (click here).

Obviously, as a special needs family, we are limited to where my children will feel comfortable going – their ideal scenario is an attraction with zero queuing and not many people – but the money-saving information was too useful not to share!

Enjoy the bank holiday!

“Close Every Door…” Thurs 23rd May 2013

Ever since D took part in her school’s Joseph production nearly a month ago she has been using the songs to express her emotions. It’s been appropriate use of echolalia or learnt script. Something that’s been very apparent from approximately the age of 4years and can produce a reaction from people who don’t know that because she has made an appropriate response they assume she has understood, which is definitely not the case.

(For example, ask D when her birthday is and she will say 20th May because that’s what she’s been told and had been working towards. But then ask her what the date is the day before/the day after and she won’t be able to answer. The question is too complicated for her. This really concerns me for the future once she’s deemed an adult and subject to assessments.)

Anyway, it was an extremely tired and bolting D I collected from school. They’d had a change to routine and she’d also be inadvertently bashed into by one of her classmates so she’d bottled up all that emotion until she saw me.

We had our wander through The Deep Dark Woods but, unlike Tuesday (click to read), our journey was accompanied by D singing a very sad song from Joseph – Close Every Door – and saying that she wanted to destroy herself. All a reaction to her day. It was heartbreaking to hear and despite bear hugs and gentle prompts, she wasn’t comfortable until we were at home, in her safe place.

A very fragile D this evening too, Bunny (aka @AutismBunny) has not left her side. She really needs the half term break next week. She’s also very snuffly, poor thing.

In contrast, bouncy T has had a great day. The celebration day at his school – in honour of a brilliant Ofsted report – has meant that it’s been a non-uniform day (so, football kit) and exploration of a circus big top and trying out circus skills in the school grounds! “Epic” as T said. Couple that with his computing after-school club and football training tonight and I think he’s had the ideal school day! He’s tired but very happy.

So, a definite TGIF from us as Friday looms. I hope everyone’s had a good day, comments/RTs/shares as ever welcomed, thanks for reading Jx 😘

Ecover sending out a “Message In Our Bottle”

Recycling is something we participate in actively in the Bluecrisps household. Plastics, tins, foil, paper, cardboard are all sorted and left out each week for the council workers to collect. Glass goes to the bottle banks. Plastic food wrapping and carrier bags are taken to the container in the supermarket and we attempt to re-use and up-cycle as much as possible. But however hard we try, we’re all responsible. Our materialistic chuck-it-away-and-get-another-one lifestyle isn’t helping the planet.

It’s frustrating when we walk past other houses on rubbish/recycling collection day and you can see the cardboard, the tins, the glass and the paper through their flimsy bin bags. Walk past the area near the local secondary school and the plastic bottles and rubbish are discarded carelessly, even though there are bins nearby and no doubt recycling facilities within school.

Our planet is so beautiful and we all need to preserve and nurture it for future generations. Any initiative that a household name commits to can only be a benefit, which is why I’m supporting wholeheartedly the Message In Our Bottle campaign with Ecover.

The information contained in the image below speaks for itself.

Cleaning the seas, one bottle at a time. Visit The-Splash for more information and to read our pledge.

I’ll be supporting Ecover’s aim to “clean the seas, one bottle at a time”, please join me, for all our sakes.

#Prose4T I’m in love with…

I’m linking up with Vic Welton at vevivos.com for #Prose4T today.

Apologies, this poem seems a bit crass in light of the truly sickening events in Woolwich yesterday.

To give a little bit of background, we have a S*ny V*io laptop, which has been renamed cr*ptop! It’s incredibly slow and just about manages to power up, spluttering away. It would take all day to do anything blog-related so I don’t attempt that.

Every so often there’s sleazily-portrayed stories in a weekly magazine I buy about people becoming so attached to their cars of trucks that they marry them, this isn’t one of those attractions, just a major case of computer envy!

“I’m in love with…

Goodness me, I’m in love with an iMac.
A 27″ screen if you please.
This isn’t a smutty story in a magazine,
I don’t want to marry it, it’s not sleaze.

I always stroll into the Apple store
And load up my blog.
It looks all shiny and gorgeous,
Well worth the job.

But look out the window,
Are those piggies flying by?
It’s a heck of a lot of money,
I’ll save up to do it, I will try.

Wait for me, you shiny big iMac,
Wait for me please,
I’ll compute with you one day,
But I’ve already said, no sleaze!!”

Thank you if you voted.. Weds 22nd May 2013

…for me in the Brilliance In Blogging awards, unfortunately I’m not a BiBs finalist, but I was incredibly chuffed that my blog made the shortlists amongst such inspirational blogs.

This badge is one that will stay on the blog with pride:

It hasn’t been a great day for T and D, both tired, both needing the half term break next week.

T, in particular, was very tired and a little bit forgetful, which made him quite irritable this morning as his obsessive need for everything to be correct set in.

We soon got him smiling on the school run though, there’s a new app called Bobo Explores Light which they are both fascinated by. Explains about how light is so important with the help of cute little robot, very informative and interactive.

Two exhausted children at the end of the school day and D shot upstairs to wail as soon as we got back, drained by her day with “those annoying boys”. Half term can’t come too quickly.

T took himself out to self-regulate on the trampoline whilst D calmed down, it feels like life is a constant risk assessment process at times.

T is excited about his school day tomorrow though, it’s a celebration day as his school got Outstanding grades in their recent Ofsted report. There will be a circus tent in the grounds apparently.

All calmer tonight and D is settling, singing Joseph songs to herself, T happily reading his football magazine.

One day closer to the much-needed half term break, I hope everyone’s had a good one, comments/RTs/shares as ever welcomed, thanks for reading Jx 😘

Bounce, bounce, bounce!

I’m joining in with the Mark Warner Active Family Month with this post today.

The theme for this month is “Get Sporty” and you honestly cannot get more sporty than this little lad:

T loves his sports, I mean really LOVES them. He strives to do the very best he can in every sporting activity and met quite a challenge when he found that he wasn’t as good at swimming as everything else. D loves swimming and it’s something we’ll be doing as a family during half term next week.

Another thing we enjoy as a family is the trampoline. It’s a great stress-reliever to get outside and just bounce!

The children bounce on it, they use their space hoppers on it and we all enjoy bouncing, hair flying everywhere, laughing as the bounces take us higher and higher.

The trampoline is a godsend as my children get anxious in public places with lots of people, public parks – if they’re occupied – are usually a no-go area as strangers in close proximity will invariably cause a bolt from the area, which then creates looks, stares and comments from other parents.

T also uses our trampoline as his calming mechanism. If he needs to self-regulate, his best way is on the trampoline, with a ball. He’ll commentate as he’s doing it, as he’s heard football commentators do. Quite often he’ll be watching a football match on the TV, the pressure will be on his team and he’ll suddenly feel the need to have a bounce, returning more regulated and calmer ten minutes or so later.

Couldn’t be without it! I’m considering getting one of those trampoline circus tents so that he can bounce in all weathers, a must for the UK!

Knight D of The Deep Dark Woods! Tues 21st May 2013

A journey is never just a journey with D, there is always something she’ll spot and leap out of the buggy to take a closer look. It’s normally a tiny bit of plastic/strip of wrapping paper/discarded ribbon/funny shaped stone. It’s all pondered over, picked up and then placed in my bag – no wonder it’s heavy by the end of the week!

Today’s journey home was a journey with a difference. Because T was an after school club (and Hubbie was picking him up) we could go home via The Deep Dark Woods, D’s favourite route and named after the Gruffalo books.

There were flowers to look at, pebbles to admire and go “plop” in the secret lake en route and dandelions, lots of dandelions!

Unlike previously when my hair would take a hit of dandelion clocks, D decided she was a knight and the dandelions needed to be stopped “from getting my Mumma!”

She was also fascinated by a wood louse going on a journey, it’s just by the twig in the picture:

D’s quest continued even when we were out of the woods and the dandelions on the verges were admonished (just those though). I guess this what comes of being the only girl in a class of lively boys.

Lovely to see her so animated and happy, the journey did take ages but it was fun.

She’s remained in a happy, settled mood tonight. Still some birthday cake left over so we’ve had candles and singing again, all good fun and I think we’ve enough for tomorrow too.

T’s had a good day too, his after school club was football so that’s virtually guaranteed that he’ll enjoy that and Hus football magazine arrived on time.

They were a bit anti with each other this morning but all seems forgotten now. Both looking forward to half term next week.

So, a good one from us. I hope everyone’s had similar, comments/RTs/shares as ever welcomed, thanks for reading Jx 😘

Happy Birthday to D! Mon 20th May 2013

A very happy, smiley girl is settling to sleep tonight, she’s had a great Birthday.

The whole day has felt like a Magic Moment (click here to read my earlier post and see some pictures), it’s been lovely.

She’s had a fab day at school, we’d taken in some M and S chocolate cake for a little party they were having this afternoon, complete with party games and singing. She rushed out delighted to see me and told practically every parent also collecting their child that it was her birthday. She had fallen over at lunchtime and bruised her knee, normally that would have meant a bolt as soon as she see me (from built-up anxieties) but not today.

We popped over to get her an ice-cream from the van and because it was her birthday, the vendor gave it to her for free! One very happy girl!

Her cake with candles (sort of) in the shape of a Number 9, they twinkled and sizzled and took a lot of puffing to blow out!

I can’t deny that T’s been a bit jealous today, I’ve tried to combat that by him receiving a couple of books (all about weird science facts, with b u r p and f a r t s in the titles) and we’ve talked about when his birthday is etc. So, it was lovely to see this, the two of them sharing and playing on D’s main present:

Moments like the one above don’t happen much and very often moods can change certainly as if a switch has been flicked, but today, all was good.

She’s been overjoyed with her presents, played with them and been a joy to be with, roll on next year!!

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

#MagicMoments – The Birthday Girl

I’m linking up with Jaime and Magic Moments today, for a very current one, it’s happening today, it’s D’s birthday.

As regular readers will know, D didn’t recognise her birthday as being anything special up until a couple of years ago. It was just another day. That’s all changed!

She’s been counting down ever since the start of May and who can blame her? She’s got six or seven years worth of excitement to make up for.

Ever since the day she was born, 12.27pm 9 years ago, she’s made me proud. I’ve cried more tears than I ever knew I had in me, both of joy/pride and sorrow. Sorrow only because when she was diagnosed I knew very little about autism, they were more tears of fear and grief for the child I wouldn’t have, rather than the gorgeous child I do.

Ever since we started on our new journey as autism parents, my mantra has been “focus on what she CAN do, not what she can’t” and it’s the best way to be.

Anyway, back to today, this lovely girl’s birthday:

She burst into our room early this morning, a happy, smiley 9year old, told us that she loved us and then fell back to sleep! When she woke up for the second time, it was present time, amidst the giggles.

Everything was greeted with enthusiasm, her cards were “the best” and she wanted me to share these cards because she loved them:

Her presents were speed unwrapped and received enthusiastically. For someone who likes unicorns, cuddly soft toys and My Little Pony, these fitted the bill perfectly.

And this was her main present. I’d wrapped it already in its case so she opened it and said “pink, that’s lovely, what is it?”. Overjoyed completely when told it was her own iPad mini, loaded up with her favourite apps but NOT automatically connecting to wifi, emails or anything like that. Even though she’ll be using it for set times and within sight, I have to enforce boundaries.

She’s absolutely delighted with it, obviously very familiar with her favourite apps and how to work it and she let T have a go on it too, which was lovely. He has to wait until November for his but it will be worth the wait.

A happy girl dropped off at school, complete with an M&S chocolate cake for afternoon snack time, she’s going to have a good day.

When I think of everything D has achieved in her first 9 years, I couldn’t be prouder. She has made me a better person for sure. I’m not that self-absorbed career woman I was – even though I miss it sometimes – I’m happy with my children, my man, my home and that’s the magical part.

Thanks for reading Jx