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

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(Not) Fickle – Sat 30th April 2016

From the moment she wakes up and is “served” breakfast, D knows exactly what she’s eating/drinking/wearing that day.  She most definitely is not Fickle.

Unlike her mum (me), on the rare occasions I go into town and (even rarer) if I pop into Prets and choose a sandwich, I differ and debate in my head the various filings (ham and cheese? Ooh yummy, but that’s a bit calorific.  Chicken and salad? Healthier but not too keen on Mayo.  Egg? Nope, just nope) and that’s before I consider white or brown bread, granary or gluten-free.

Nope, there’s nothing fickle about D, she knows exactly what she does and doesn’t like, same as her brother.

What she does like, though and what’s made her smile today are these:


And this:


Because she absolutely LOVES the Mr Men and Little Miss books and can quote verbatim vast amounts from the stories, she has an amazing memory for detail, but if you asked her “what’s 5 plus 10?” she’d struggle, unless it was written down.

Why the sausages?  Well, they were in our shopping delivery, extremely nice they are too and D is always very helpful when it comes to putting the freezer stuff and crisps away (bless her).

She spied the sausages (now there’s something I never thought I’d write) and was instantly reminded of these two pages:


Her absolutely favourite part of the Little Miss Fickle story and, every time we see sausages in the shops (especially at the fresh meat counter), out comes the “beef sausages or pork sausages? PORK sausages” saying.

Something that’s made us all smile today.

#ThisIsMyChild MumsNet Special Needs campaign

Special Needs Jungle

Tania writes…

MumsNet have today launched a new “myth-busting and awareness-raising” campaign called #ThisIsMyChild.

thisismychild-250It’s been launched in response to requests from MumsNetters and supported by input from some of the leading charities in the field.

Its aim is to support parents of children with additional needs, inform everyone else, and open up a conversation about how we can all act to make life easier for everyone caring for children with additional needs.

I am delighted and very excited to have been asked to support the campaign and will be picking my favourite posts from a Linky being launched on Tuesday – so standby for that.

Debs and I will  also mention some of the posts here on SNJ as the campaign progresses.

For this campaign to be a success MumsNet need it to reach far and wide, so please share as widely as possible – via Twitter (

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AutismMumma is moving ….. Please join me

*sniffs* this feels like a massive change but I’ll no longer be blogging with wordpress for either my autism or lifestyle blogs.

The autism blog will now be found at http://www.autismmumma.com, please click on the link to sign up and continue to receive email updates.

The lifestyle blog has moved to http://www.ditchflabgetfab.com.

Thank you so much for supporting me, I hope you’ll like the new sites.

Jeannette xx

Putting anxieties into a “Worry Bag” – Best £1.99 spent EVER!

First day back at school for D today, like many other children.

She didn’t sleep well last night – despite her melatonin – and anxieties overtook her at 3am. Cuddles, reassurance, back to a sleep which-wasn’t-really-a-sleep, a one-eyed-open sleep waiting for her to come back in.

A tired girl this morning, an anxious girl. Not wanting school, a particular anxiety around a fellow classmate overtaking her.

Then I remembered I’d bought this:

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A “worry bag” from eBay, the seller and I exchanged messages afterwards and she’s a mum to an autistic daughter too. Her website has some great visual ideas on here – asdbrightideas.co.uk – and it’s somewhere I’ll be returning to.

But in the meantime, we had a Worry Bag to try out. D was scared at first, she didn’t understand what we were doing but I wrote her anxieties down on a piece of paper, we read them, we folded them and placed them into the bag. Then we decided where we’d put the bag.

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Literally from that moment on, she relaxed. I got my girl back and the journey to school was fine. I got a big hug before my smiling girl went in too.
A complete contrast to half an hour before.

If only that worked for bigger issues as well…

Written in the hope that our experience helps, I didn’t expect such a positive result the first time we used it…but it worked.

Like the title says….best £1.99 spent EVER!!

Autism .. The Guessing Game – April is Autism Awareness Month – Day 8 of 30

As before, tonight’s diary post is at the end of the blog.

The post I’m revisiting today is one from March 2012, I don’t think it’s one that will ever have an answer despite the headlines from time to time.

Since I’ve been active on Twitter – about 15 months – there have been numerous causes banded around for autism, here’s just a few that I remember:

Flu in the mother
Elderly father
Weight issues in the mother
Chemicals in disposable nappies
Salt
Toxins

These are just a few examples and I don’t think these types of headlines are particularly helpful to parents/carers and individuals already wondering “Why?”, it just adds to the guilt that every parent feels.

Here’s the post:

Autism – The Guessing Game

Because there is no known cause or cure for autism, you receive your child’s diagnosis and wonder …. how did it happen and why? I blogged about this in my Looking Backwards, Moving Forwards post (click to read).

And then, you can’t help it….you look within yourself and your partner. You play a guessing game.

Hubbie, for example, has always been quoting virtually whole scenes from Fawlty Towers or Jasper Carrott sketches. Something will remind him, and off he goes….it’s endearing at first, but after ten years, I’ve heard them countless times. He always has to be early for everything, he’ll say he’s leaving at, say, 9.15am and then leave 10 minutes before. To be fair, he’s got his own business and is extremely self-disciplined.

And my family…Dad and three of my sisters are all accountants. Not for me, way too boring (not that I am knocking anyone who does accountancy, it just wasn’t for me). I check the back door is locked before we go out and then re-check it. Always drink my water in gulp multiples of 2!

And we are both extremely stubborn, but then that is a bonus, it will also stem into determination to get things done.

I guess when the genes balls were juggling for my beautiful D, they just collided a bit more, or fitted together a bit too closely.

Not that I would change her for anything. She’s my daughter who happens to have autism.

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Our day:

It’s been a bit of a roller-coaster, either T and D have been happily occupying themselves (T writing out his scores on his league tables from playing FIFA 13, D drawing and cutting out teeny tiny shapes endlessly) or they’ve been squabbling.

Squabbling over the smallest of things like we’re running low on crisps – D loves crisps, she’d eat them all day if I let her, but I don’t! So running low is a BIG thing for her – she said we’d have to get some tomorrow, T replied we can’t because we’re out, D gets over-anxious and we have a meltdown situation. Over crisps, which can easily be bought virtually anywhere.

The situation escalated too quickly for me to intervene until it was too late, but that is how it is sometimes.

So yes, we are out tomorrow but crisps will be purchased and popped in the shopping basket under D’s buggy. Obviously their purchase will have to be factored into the timetable for T.

That might seem like a boring example but sometimes situations do escalate quickly and without warning, especially if the issue is important to the child – in D’s case, making sure that there were crisps in the cupboard.

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

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#MagicMoments – Seeing Things More Clearly..


It’s Monday morning again and I’m linking up with Jaime at theoliversmadhouse for another Magic Moment. To read Jaime’s post for Joshua – click here.

Today’s Magic Moment is a bit different from one of my usual ones but it’s magic to me.

I’ve always used my sunglasses as a mask, these together with eyeliner and mascara. The sunglasses are a necessity with special needs parenting – you never know when tears will suddenly come – and the eyeliner/mascara needed because I’m so fair. Click here to read a post from last year when I let the mask slip.

For some reason T has been blessed with the longest thickest eyelashes ever, whilst his sister (D) and mother (me) have short, stubbly fair lashes. I did try eyelash extensions once and they were AMAZING until they started to grow out and then I looked like I had spiders legs above my eyes.

Anyway…digressing madly.

I found out about 3 weeks ago that I needed glasses, no great surprise and I would have been astounded if they’d said I didn’t.

Part of me felt a bit disappointed though, I always felt that the eyes were the window to your soul and wondered if I’d be perceived any differently.

T took the news very badly, he couldn’t understand why I needed glasses if I could see/read and he got very very upset. He admitted he didn’t want me to look any different. D, on the other hand, was delighted, as she’s been wearing glasses for a year.

T’s reaction made choosing frames very difficult, did I go for obviously kooky frames or something more subtle?

We had to wait until the school holidays to go into an opticians and just hope that T would be comfortable enough to accept frame suggestions that he was happy with.

In the meantime, I bought some frames from ebay and I had a blog review to do for a lenses re-glazing company (click to read) so I sent off the frames and waited for their return. Anticipating that T wouldn’t be terribly happy but it would get him used to me in glasses.

When they (the frames) arrived back, I was very apprehensive. Did I copy down the prescription correctly? Would they have read the numbers correctly? Would T be ok? Would I notice a difference?

The answer is yes! Finally here’s the magic moment you cry!

Subtitled programmes – which I have on at night if Mr Bluecrisps is doing his best impression of a warthog next to me – are clearer to read, it’s like everything is more defined. My eyes don’t feel so tired at the end of the day either.

Here are my current frames:
T doesn’t like the pink bit at the the top but we’ve now been and chosen some rimless frames so these will be spares.

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Here’s the rimless ones, they have an obligatory bit of purple in the frame arms and T is happy with them.

Free sunglasses too in the deal from Boots.

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A good example of the improvement is my front door, from a distance it’s now more defined. All the . Subtle but noticeable difference.

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Because I only need them for distance – not reading – I can do the glasses-half-down-the-nose bit and wag my finger, pretend to be stern and look quite daft!

So, purse lighter but eyes happier, I’ve joined the glasses brigade, but as I said in my Boots Feel Good Forum post – click to read – age is just a number”, it’s what’s inside that counts..me, wife and Mumma.

Silent Sunday

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Penny for your thoughts – April is @Autism Awareness Month – Day 6 of 30

As before, today’s diary post is at the end of the blog.

Today’s revisited post is below, Penny for your thoughts, I don’t know what made me join twitter in November 2011 but I’m so glad I did. Written in February last year, everything still rings so true.

Here it is:

Penny for your thoughts:

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 children with autism. You reach out to them and they respond.

The first time I started have a twitter conversation with someone in the same boat, 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 (now closed) 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.

I am so grateful for every share, every RT, every comment. Truly.

Our day:

Poor D’s been getting a bit confused as to what day of the week it is, in the last few days. I guess the long bank holiday weekend, together with the school holidays, have really thrown her.

We go through what day it is and what we’re doing every morning but she’s needed reassurance throughout the day.

It’s been a good one though, a relaxed morning at home and then a trip to the shops this afternoon when it’s always quieter.

We had to pop to the opticians to order my glasses. For some daft reason, even though it’s a small shopping area, there are three opticians! I guess it’s whoever can afford the rent. We luckily were the only customers and therefore D was very relaxed, happy to chat to the assistants and tell them all about her chick, Elizabeth (which she named after the Queen).

She was delighted therefore that little Easter chick decorations were reduced in the supermarket and got some “babies” for Elizabeth as a treat. The only downside was that the supermarket was quite busy, people just don’t seem to notice her buggy or any attempts to get past the trollies they leave everywhere – I always say “excuse me”. I don’t know, little ones in buggies are always cooed and smiled at, everybody older seems invisible/an object for stares, will it always be like that?

Elizabeth “met” her chicks when we got home and is, according to D, very pleased to be a mother!

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T did well today, his team winning 4:3 at home today, which is apparently 7 wins on the trot. It must have made a change not to be playing in the wind and rain today, well…it is April and Spring might finally be coming!

A good day therefore for us, now if I can just get rid of this cold…

Hope everyone’s had a good day too, comments/RTs/shares welcomed. Thanks for reading Jx 😘

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Definitely moving forwards – Autism Awareness Month – Day 3 of 30

I’ve set myself a challenge this next year, you can read about it here, anyone who wishes to join in is more than welcome.

Today started early with a distressed D, when I asked her what she’d like for breakfast, she replied “lots of hugs”, which is most unlike her, if D doesn’t have an appetite you know there’s something wrong!

She regulated herself with lots of fine motor skills work this morning, colouring stones that she’d gathered and scrunching up tiny bits of Easter egg wrappers into little balls. The latter always seems to calm her (picture at end of some very pretty stones).

Unfortunately we had to venture out to the shops this afternoon, like Old Mrs Hubbard the cupboards were bare (ish).

There was a result today though, T has been very very negative about the fact his Mumma now has to wear glasses and so, he’s had some input into the frames I’ll be getting. As expected, he prefers the rim-less frames (and so do I) I think he felt slightly better for being involved.

Supermarket shop and …oh, the stares and comments don’t stop do they? It was a relief to get what we needed to and get out. The cashier was nice though but her voice-as-if-she-was-talking-to-a-baby to D was very evident.

Next our sanctuary – Costa – very familiar place, staff all know us, a nice quiet spot found and they both immediately went onto JetPack.

Tonight D’s got very tired, very quickly and hopefully she’ll sleep better.

The post I’m revisiting below is another early one that just poured out one day. There are so many theories and ideas around the “cause” of autism, I don’t want to “blame” anything or anyone, life is too short and I have my children to raise acceptance levels for.

Here it is:

Looking Backwards, Moving Forwards:

We have a couple of canvas prints of the children on the wall in our living room, one of the three of them and one of T and D together, I love the latter one especially as he has his arm around her (you can just about see this) and they were both looking at the camera. I then noticed the difference in facial expressions on the first one and it made me look through some more pictures.

I noticed that in the majority of them D wasn’t smiling and in a lot of them, she was squinting at the camera – anticipating that flash as the camera look the picture. This was evident in a lot of the pictures and from an early age.

Got me thinking. Was she born with autism or did it develop? Let’s go back a while…

D was born at home, in my bedroom – a planned home birth – 6 days early. I had had a fall the week before (fell up my back step) and there had been a chance that she would have been an emergency caesarian, her heart rate was very high for a few hours but it settled and I was allowed home and gave birth 6 days later – would that distressed state in the womb have contributed?

Labour was manageable, with just gas and air. I had dreadful sciatica in my legs throughout but that was the same in my previous two labours. There was no pushing time. Once she was ready, she was out! Much to the amazement of the midwives. 6lb 12oz birth weight.

First few days, she mostly slept and fed. Wasn’t able to feed her myself as I had to be on antibiotics as soon as she was born, I had grazed one of my legs in the fall and needed some medicine to combat the infection that was building up.

The first few months went by in a haze. But we did notice that it was only me that she would tolerate having a bottle from, going in to do the night feeds or pushing the buggy. Anyone else – even Hubbie – would be screamed at.

Later on, she would always have to have a certain toy with her when we went out. It was plastic peas and a plastic asparagus stick from ELC, always had to be held, always had to go with us, terrible trouble if they were dropped or lost. We would always have to go to the shops the same way too, she did not like anyone walking behind, alongside or in front of the buggy – apart from me.

It was exhausting caring for a young baby and T – there’s only 18 months between them – especially as D would not tolerate anyone else caring for her.

Nothing was picked up at 6 month check, in fact the health visitor was more fascinated by the fact that T could tell her all the football team’s badges at 2 years old.

D didn’t crawl, she used to propel herself along with her arms, with her legs in a yoga position. She walked the day before her first birthday.

Her 2.5 year check didn’t highlight anything. The doctor almost used a tick box and if he heard her say one word, it was “she can talk, tick”. By then, I was childminding too and had a girl to look after who was a month younger than D, her speech was far more advanced – D’s was very stilted – and I remember thinking “I hope she catches up soon”.

And then something happened which I think brought her autism out more prominently. D started having febrile convulsions, absolutely terrifying to watch and a completely powerless feeling as a parent. Her body didn’t seem to be able to cope with a raise in temperature, such as the beginning of a virus and she would black out. We were experiencing one every two weeks at one point. Quite a few overnight hospital stays. The most serious one started in the supermarket, the staff took us around to the surgery and she was unconscious for 30 minutes. The doctor calling her, trying to resusitate her. I remember the ambulance trip, feeling absolutely terrified of the implications of a half hour blackout. The hospital wouldn’t MRI scan her though, just sent us home the next day. I’m sure that episode didn’t help. The only advice we were given was calpol and ibuprofen as soon as her temperature was raised, and any further blackouts, bring her in if they lasted over 5 minutes.

She started at mainstream nursery and very quickly they picked up on the fact that she preferred solo play and her speech was stilted. They referred us to a speech and language therapist who not only asked about family background etc but questions related to her habits, favourite toys etc. I came out of there thinking “why was she asking about toys, why asking if she liked to carry things around with her”.

Started googling some of her questions the next day and “autism” kept coming up in the answers. It was as if a lightbulb went off in my head, suddenly the flapping hands when she was excited or anxious made sense, the pigeon-toed walking, the solo unimaginative repetitive play, the lack of empathy if anyone else was upset – it all added up.

I phoned the speech and language lady to ask her opinion, she was very non-committal and said she was referring us to a paediatric doctor. This was all during the school summer holidays so hubbie and I discussed it at length, cried, grieved and knew that we had to talk to nursery as soon as term started. Which I did, through tears.

D was officially diagnosed three months later, at the age of 4.5 years with autism, delayed motor skills and heightened sensory awareness. It took a further year to get her statemented, at the second attempt.

So, I don’t know…. What I do know is, she’s my girl, and I love her to bits.

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

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I’m “Losing it for Autism” – join me/sponsor me!

It’s April, it’s Autism Awareness month and I’m upping the stakes.

I’ve been joining in with #WobblesWednesday weekly since the New Year, weight loss so far 1stone and 3lbs and it’s time to link my weight loss journey with my wish to make some money for @Autism (The National Autistic Society).

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I’ve set up a JustGiving account and I’ll be matching lbs for £. My target is £500, not that I have 500 lbs to lose but it seemed a reasonable target for the next year (until World Autism Day, 2nd April 2014).

If you’re a parent/carer of someone on the spectrum, why not join me? Every £ raised is really going to help with the work that @Autism do, providing support and information.

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Timing-wise I wish I was starting this next week as I’ve stayed the same, no loss and no gain. I’m surprised there wasn’t a gain what with Easter goodies and having the weekend off…but, it’s back to it from today. Focussing on what-I-know-works-for-me, upping the protein and veg intake, trying to resist the chocolate goodies.

We had a lovely day out at Legoland on Saturday, I packed plenty of food for the children as they like their own food, their own plates etc, unwisely thinking I’d be able to find a healthy option on sale. Wrong! I ended up chomping a cheeseburger (nice though it was) but so expensive too. £5.95 for a children’s meal as I wanted the smaller portion.

Renewed vigour from me. I’ll be updating my this blog every month on the 3rd and continuing with #WobblesWednesday weekly – I need to, things have gone a bit more public!

Linking up with Kate on thin ice and the other ladies, without their weekly support I wouldn’t even be contemplating this.

Good luck for the week ahead, below are my children, take a look at this post to read why photos can be deceptive.

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Thanks for reading, here’s a quick plug:
“I’m fundraising 4 National Autistic Society & I’d love yr support! Text AMUM76 £1 to 70070 to sponsor me today. Thnx. Here’s the link JustGiving.com/autism-mumma