Me and my girl and boy, raising awareness and acceptance of autism

Archive for the ‘Life lessons’ Category

The A-Z of me

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I enjoy meme’s both from a reading-other-people’s answers and a what-would-I-say view point.

Recently one popped into my email inbox from Donna at MummyCentral and it looked like it might be fun to join in with. No obligation for anyone else to join in, but if you do, leave a comment below and I’ll pop over and take a peep at the answers.

Here goes:


ANORAK….do you have a sad side?

I don’t think I do really. I prefer 80’s music over any other era just ‘cos it brings back so many great memories. The majority of my “Music Mondays” are probably (okay, definitely) 80’s tracks. And I’m passionate about getting autism awareness and acceptance raised, as a parent I owe it to my children.

BODY…What physical attribute would you most like to change?

I have “junk in my trunk”, “child bearing hips”, “booty” – whatever you want to call it. I know that however much weight I lose, I will still be curvy and pear-shaped *shrugs*.

CELEBRITY…Which one would you most like to date and why?

This one made me think, it wouldn’t necessarily be my obvious choice of a crush.
Not a date, but I think I’d like to have a coffee with George Osborne (he can pay) and have him promise that he’d sit there for an hour and listen to a special needs parent/wife of a self-employed person tell him how it feels to be living within this current economic climate.

DEBUT…Tell us about your first ever blog post. What made you start blogging?

I have two blogs, my autism blog and my lifestyle blog, both arising from a therapeutic point of view. First posts on both were introductory.

ERROR…What’s been your biggest regret?

My maternal grandparents lived through WW2, he was in the RAF, she was a practising midwife. Life must have been very frightening and difficult. They were both very proud people, not wishing to dwell, I wish they’d opened up about life a bit more but memories were painful.

FUNNY…Who’s making you laugh?

I can watch endless showings of Miranda and still laugh. Mr Bean is a favourite in our house and the Carry On films, I guess it’s gentle innuendo and slapstick everytime.

GRAND…If we gave you one right now what would you spend it on?

I’d like to say I’d take the family on a long weekend to DisneyLand Paris, creating wonderful memories for the children but realistically it would go on gas/electric/council tax bills etc.

HOLIDAY…What’s your favourite destination?

We married in Jersey so that holds special memories but I’d love a sunshine break. Somewhere with idyllic beaches, clear blue sea and skies etc.

IRRITATE…What’s your most annoying habit?

Hubbie would definitely say my stubbornness and my need to have the last word in an argument (not that we argue that much, we’re too similar!).

JOKER…What’s your favourite joke (the one that makes you laugh everytime you hear it)?

It would be:
I went to the doctors and said “have you got anything for wind?” He gave me a kite.

Silly but gentle toilet humour every time.

KENNEL…Do you have any pets?

Oh yes! We have three guinea pig brothers – George, Bungle and Zippy – who’s primary hobby seems to be …eating! Also, two tabby cat sisters – Itsey and Bitsey – Itsey bounces around like a springy squirrel, Bitsey is more of a guard cat. Both enjoy cuddles in their own ways.

LOVE…Are you single, married, engaged, living with a long term partner?

I’ve been married to Mr Bluecrisps aka Hubbie for 11 years this year and we’ve been together for 13. A disastrous first marriage left me a single parent with a 3-year old for a couple of years before we met Hubbie.

MEAL…What’s your ultimate starter, main and dessert?

A chance to look but not touch as I’m “Losing It For Autism”, I think it would be (stuff the calories):
Starter: Stuffed mushrooms
Main: A (very) well-done steak, horseradish mash, broccoli and some more mushrooms
Dessert: I doubt I’d have room but a macaroon.

NOW…If you could be anywhere right now, where would you be and who with?

I’d be with my family, watching the children building sandcastles on a warm beach.

OFF DUTY…What do you do in your spare time?

I don’t have that much spare time but I’m trying to make more “me” time. An interrupted bubble bath with a magazine would be bliss!


PROUD MOMENTS…What are you most proud of?

My family, without a doubt. I didn’t have the easiest of childhoods and, in contrast, Mr Bluecrisps, had an extremely stable one. We met each other at the right time for both of us, any earlier and it wouldn’t have worked.

QUEASY…What turns your stomach?

Bullying. Live and let live.

RELAX…how do you relax?

It would be either afore-mentioned bubble-bath or – something I haven’t done for ages – having a facial.

SONG…What’s your favourite song of all time?

The Communards “Don’t Leave Me This Way”. I can never listen to this sitting down, brings back great memories.

TIME…If you could do back in time and relive it again, when would you choose?

I don’t think I’d relive any specific moments, life happens for a reason. If my first husband hadn’t left me, I wouldn’t have met Mr Bluecrisps and T and D wouldn’t be around.

UNKNOWN…Tell us something about yourself that no one else knows?

I share quite a bit on the blogs, I think I’m an open book. I find it difficult to trust people.

I don’t drive, that can cause logistical issues but everything I need is within walking distance/town is a bus ride away. I’d be terrified of my daughter bolting in a busy car park too, which she is prone to do if anxieties overtake her.


VOCAL.. Who is your favourite artist?

Simple. Midge Ure. Love his vocal range, saw Ultravox live for the first time a couple of years ago. Unforgettable.


WORK…What is your dream job, and are you doing it now?

Having had two home births, I’d have loved to have been a birthing assistant. Giving birth at home (assuming everything goes okay) is a completely different experience to a hospital birth.

I really enjoy writing and I have a book inside me, it’s finding the time to let it out.

X-RAY…any broken bones?

I broke my collar bone at primary school, running into a telephone on the wall apparently. I don’t remember anything about it.

YIKES…What’s been your most embarrassing moment?

Ummm…probably not realising beforehand that the b o w e l s empty during labour.

ZOO…If you were an animal, which one would you be?

A tigress, protecting my young.

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A Rant for Friday – Hacked!

My email got hacked overnight and since 4am this morning I’ve been receiving messages of non-delivery – the first indication I’d been hacked.

I never click on dodgy-looking links in DMs or emails, a regular amount of email goes to “Junk” and “Junk” it indeed is: banks I don’t bank with telling me to click on the link and verify my details, “diplomats” or “secret agents” asking if I’d receive some money for them; diet pills (oi!) and links to photos apparently taken of me. Delete delete delete.

But, despite all this, someone managed to hack my email at 2.18am this morning and send dodgy links to EVERYONE we’ve ever emailed. Hubbie’s customers, people I’m liaising with to write/review for, personal contacts, schools, ex employers everyone.

I think it know how it happened, and it’s not by clicking on a link. My email was public in a tweet I sent, because I was tired, not feeling that great and basically I let my guard down and slipped up. 4 hours later (accordingly to the report issued by my service provider) I was hacked.

So, lessons to be learnt:
Don’t EVER put your email in a tweet
Don’t click on links in DMs/emails if you’re either not expecting them or they look dodgy (the hacked emails from “me”, for example, have letters added onto the end of my surname)
Query with whoever who you think sent it if you’re still unsure but DON’T open the link.

If you do find that you’ve been hacked:
Change your password immediately
And
Delete the account if email/app if twitter from your phone/tablet and then reinstall.

I hope this helps. I’m furious with whoever did this for a laugh but it’s taught me a lesson.

And if you’ve received a dodgy email from “me”. I can only apologise.

Thanks for reading Jx

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Coping strategies…not “growing out of Autism”

Sometimes an article is published that you read and think “did anyone actually research this properly?” and “oh dear, this really isn’t going to help”.

Yesterday was such a time. An article published by BBC Health Children may “outgrow” Autism.
(Click on the link to read) but below is a sample from the article:

“While not conclusive, the study, in the Journal of Child Psychology and Psychiatry, suggests some children might possibly outgrow autism.

But experts urge caution.

Much more work is needed to find out what might explain the findings.

Dr Deborah Fein and her team at the University of Connecticut studied 34 children who had been diagnosed with autism in early childhood but went on to function as well as 34 other children in their classes at school.

“Although the diagnosis of autism is not usually lost over time, the findings suggest that there is a very wide range of possible outcomes”

Dr Thomas Insel
Director of the National Institute of Mental Health
On tests – cognitive and observational, as well as reports from the children’s parents and school – they were indistinguishable from their classroom peers. They now showed no sign of problems with language, face recognition, communication or social interaction.”

As the parent of one (possible two) child(ren) on the – extremely wide – spectrum, this article concerns me. Again, this is people trying to “cure” autism. I wonder if its motives are monetary.

My daughter is in a special needs school, with a statement, because she needs to be. She could not cope with elements of mainstream school – the sheer number of children in class with its associated sensory overload, the class itself (she did most of her work at a desk in the corridor) and the play times – children running past her, shrieking, playing, doing what NT children do in a playground. She could not access the curriculum at all at times – despite a full-time TA allocation – and this meant that emotionally, mentally and socially she was further and further back from her peers.

I used to childmind a girl in D’s class and the differences between their levels were extremely vast, and not just the obvious. Occasionally the girl would do homework at my house and hers set was many levels above D, it used to make me feel very sad for D. It was an immense relief when she was statemented and we had the choice of a special needs school for her.

That was the best decision ever. It was a hard decision to make, Hubbie and I had to look beyond her immediate needs and consider long-term. Did we want her to be in an environment where she would ultimately get GCSE qualifications, but would she be physically and emotionally able to access mainstream? Or did we want her to be happier in a more autism-friendly environment, not necessarily leading to qualifications but gaining life skills? It was a no-brainer really, we had to consider D’s happiness.

And she is happy, on the whole. There are days when she doesn’t want to go into school, there are days when I pick her up and she’s absolutely furious that, many hours before, someone had brushed past her lightly and it hurt her and she’ll store up that emotion she felt at the time (hurt, anger and frustration) and let me have it! Sometimes physically.

So, does this mean she has “outgrown autism” or will in the future?
No. She is coping. Smaller class sizes, a higher ratio of staff to children and a very (on the whole) low sensory environment have meant that she copes. Brilliantly enough at times to participate in a school play (whereas in mainstream she wouldn’t even manage to go into the hall, let alone perform).

Contrast that happy, confident girl at her school performance in December (click here to read) to when we’re in town shopping. The sheer volume of people bustling past, the music blaring out from the shops, the smells etc and she is an extremely anxious child, she is overloaded sensory-wise. Something I tried so hard to explain in my meeting this week, something that just wasn’t being taken in.

I am so proud of her every day, but I worry for the future. Worry that articles with their inflammatory headlines do not help recognise that autism is a life-long condition.

Thanks for reading Jx 😘

I found a thread on Mumsnet which was interesting regarding this topic, to view it click here.

It’s Good To Talk…

Or tweet, text, blog, connect on Facebook …

The death of Jacintha Saldanha was a shocking end to a “prank”, even more so was the way some elements of social media reacted to the news.

“It’s only a mistake at work” said one tweet. Not many people can say that a “mistake” at work is broadcast around the world, no doubt listened to by millions and the instigators of that “mistake” openly proud of themselves (at the time) for the publicity they’ve generated for their radio station.

Unless you’re Nick Leeson (for example) most mistakes are minor and not really discussed again. I guess poor Jacintha found it impossible to move on from the anxiety she felt.

Suicide is final, there is no going back from that. There was a very good post this week on the Tots100 this week regarding suicide and how we should discuss mental health issues more openly.

Unfortunately I know from very recent experience that suicide in the family is not an easy topic to discuss, especially with children. It was extremely hard to try and explain to our ten year old why someone would feel so low, so unable to discuss what was wrong that that was the only way out for them, but it was necessary.

There are various stages through coming to terms with a suicide – shock, anger and then a profound sadness. I hope that the various media elements will allow Jacintha’s family, friends and colleagues the necessary space to enable them to come to terms with her death.

If you, or anyone you know are feeling so low that you cannot see a way forward, reach out – talk, tweet but please tell people. Two people a day commit suicide, that is two too many.

These organisations can help you SAMH and The Samaritans if you would prefer to talk to an impartial individual you don’t know, but please tell someone.

Thanks for reading.

Twitter and how it’s helped me – one year on

I can’t remember the exact date I joined Twitter but it was sometime after Children In Need last year (2011).

My sister-in-law (bless her) was my first follower and up until then, I had only pottered around on it. Had a look to see what my favourite writer and singer were up to and that was it.

And then I thought I’d have a little search under #autism and I’m so glad I did! The #youmightbeanautismparentif hashtag was just starting up and very soon I realised that this was a way of connecting with other parents/carers of individuals on the autistic spectrum.

My post below – which I wrote in February – is still as relevant, if not more so now:

“PENNY FOR YOUR THOUGHTS: (Feb 2012):
In a pensive frame of mind today. Now that I’ve been part of the twitter community for three months or so, it’s take stock time.

When I first signed up on twitter, I started off by following my favourite singer (and teenage crush lol) – no I’m not naming! Then a writer who’s work I always enjoyed reading. Left it like that for a while. Made one reply to a celeb’s tweet and when I didn’t get a reply, thought “humph, bit rude” it’s only when you look at their profile and follower numbers that you realise they are probably
absolutely bombarded by replies every time they tweet. Even if it’s something like “run out of milk”.

And then you get a bit more confident, you start searching for people who share the same interests or, in my case, have a child with autism. You reach out to them and they respond.

The first time I started have a twitter conversation with someone who also had an autistic child, I remember thinking “is this for real, how does she know how I’m feeling – how scared I am for D’s future, how much pride I take in the little achievements that she makes, how does she know?” You swap photos of your children and think “wow, I’ve found a kindred spirit here”.

And then leads on to following more people, having more people following back. People that make you laugh with their antidotes and jokes, people who make you cry with their life stories, people (bless their souls) who aren’t around any more due to the cruel and non-discriminating disease called cancer.

I changed my user name from Bluecrisps to reflect more of why I’m on twitter, I started blogging and am so pleased when someone comes back and reads it and says “yes, I identify” or “we’ve been through that and this is what we did”.

None of us know what the future holds for our children and, if I’m being honest, the way the Government is trying to cut and disregard the disabled community really really scares me. Any parent of a special needs child has enough to worry about. We need to take notice of the Welfare Reform Bill and DMS5 proposals as it will affect a lot of our special needs community. Sign up for Pats Petition if you haven’t already, singularly we aren’t powerful, put us together and we have a voice demanding to be heard.

I’ve unfollowed quite a few celebrities, I’m not interested if they’ve run out of milk anymore.

My only regret is that I miss out on the tweets from America, Australia etc because I’m asleep (if D let’s me sleep that is).

So, to every one of you that reads this, thank you.”

And one year on…it’s amazing, the special needs community is wonderfully supportive. There is always somebody around, of course it’s not telepathic, you have to reach out/reply but advice/support/virtual hugs, it’s all there and available if you want it.

If someone had said to me this time last year “you’re going to start blogging and eventually you’ll have a website”, I would have said they were joking. Because I am incredibly un-technical but the beauty of my little phone is that there is a WordPress app so I can literally blog “on the move”. There have been some great people who have advised on the best blogging platform to use; given their feedback on the theme chosen: added widgets when I couldn’t (I said I was un technical!) and assisted me greatly in setting up the website. Very very grateful.

There’s been a couple of low points: trolling, both very unexpected occurrences – see The Dark Side Of Twitterand Spam, ham and rotten eggs – but I’ve learnt now to “block and ignore” if necessary.

I have some more plans for the website and, potentially another one. I can see the need for the second one, it’s putting it into practice. Watch this space!

I have come to realise that autism awareness isn’t enough for me anymore, acceptance is what’s needed and with one diagnosed, one in process child at differing ends of the spectrum that need isn’t going to disappear any time soon.

I am very appreciative of every mention/RT/blog comment and I try to thank each one.

So, *blows out candle* thank you Jx 😘

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Comments/RTs/shares as ever welcomed, thank you for reading.

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Spam, ham and rotten eggs

I try to clear out my “spam” folder at least once a week, it’s usually quite an experience. Comments which have nothing to do with what I’ve written about, links to all manner of “dodgy” sites – I never click on them, just wonder occasionally how they’ve found me.

There was a spam comment a couple of weeks back that I decided to reply to. It was personal, it referenced the blog title, made derogatory remarks and ended with they wished they hadn’t bothered reading – an opportunity to reply with an explanation and get some awareness raised I thought. I didn’t hear anything further from them.

This week has seen more comments from within the autism community. I’m going to reference this post United we stand, divided we fall and leave it at that, apart from to say I hope my blog is helping to raise autism awareness and acceptance. I blog honestly and openly about bringing up special needs children (I’m saying children even though T is currently undiagnosed) and related topics. People have the option to read or move on, I’ve been doing this diary blog since March so the content is familiar.

Those comments aren’t going to make me stop blogging, but they have the option to stop reading.

Thank YOU for reading.

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Realising something from my doodles

For as long as I can remember I’ve doodled the same sorts of things.

Treble clefs have always been a favourite. I could fill a whole page with them. Large ones, small ones, some with very elaborate swirls, others quite small and simple. We have a blackboard wall in our hall and I can happily cover it with treble clefs.

Flowers as well, specifically daisy shapes, ending in a heart at the bottom.

Speaking of bottoms (ahem), I like to start with a “w” and turn it into the back of a person. I remember doing this at primary school and being really worried that the teacher would think I was being rude, when I wasn’t I was just turning it into a person.

And cats, rounded cat shapes.

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It was when I was looking online idly this afternoon for doodles and their meanings that I realised that my doodles are always rounded, there’s very rarely any sharp corners or angles.

This is the meaning for circles and rounded shapes:
“Circles represent a need to find unity and peace. They can indicate someone who is struggling to draw everything together and make sense of it. It can also indicate a strong intuitive sense that things are coming together to form a whole, whether that refers to relationships, or life in general.”

I can clearly remember starting doodling before my parents divorced and I guess, looking back, it was one of my ways of dealing with a very anxious, stressful time.

I also look at D’s fantastic drawings (see my Artwork by D post) and they are completely transparent to me. She draws what she feels and I’m pleased to say they are 99.9% positive images.

It’s funny how researching something you’ve always wondered about suddenly makes sense.

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