Category Archives: Uncategorized

Big Competition Time – Design me a costume!

If you follow me on Facebook you’ll know that this weekend I went to Em-Con.  For those that don’t know Em-Con is a Sci-Fi geek-fest in Nottingham and it was lovely to let my inner-geek run free for the day.  



It set me thinking that, although rare, I do go to several events throughout the year where I could spread autism awareness by donning my Autism Amazon persona for the day ………… but, what to wear? 

It has to be EYE CATCHING, fit the AUTISM and AMAZON characteristics and it has to be suitable for a lady with AMPLE CURVES!  Which is where I’d like your help – or more correctly, I’d like your child’s help. 

I would just love to make and wear a costume designed for me by one of your children (NT sibling or ASD, I don’t discriminate) AND I’ll also organise a secret, special one-of-a-kind prize for the winner!

I’ve sourced some wonderful realistic templates from the amazing people over at Tracing Real Body Models for your children to use.

Step one – save one or more of the templates to your computer, phone, tablet, thingy-ma–jig

Step two – print onto A4 White paper

Step three – allow your child to be as creative as they like – paint, crayons, fabric scraps, glitter, dry pasta….remember I want to make people approach me and ask who I am and why I’m wearing the costume!

Step four – scan or photograph your child’s masterpiece and post it to my Facebook page Autism Amazon

Step five – (well, this is my step) I will post them to my main wall and ask my followers to help me choose which design I should make into my OFFICIAL AUTISM AMAZON costume.





I cannot wait to see what you all think an Autism Amazon should look like!

Forced onto my knees to beg for support

Re blogging this from Faithmummy.wordpress.com
This is the reality for the majority of families with autistic children, every department passes the buck to the next, years on each waiting list just to be told you ‘don’t meet the criteria’ and laughably little support or respite.

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I try to stay positive. I try my best to work within the system and I am very grateful for each and every professional involved with my children. But right now I am forced onto my knees to beg just for basic support and it is disgusting.

Here are some examples:

My six year old child is non verbal. He has complex medical and developmental needs. He has a diagnosis of classic autism, neurofibromatosis type 1, global developmental delay, severe learning disability, vision impairment and pica. He attends a specialist school miles away from our home. Yes despite the fact he can not jump, balance on one leg, speak a single word, dress himself, is not toilet trained and his understanding is very limited, he is not able to receive any physiotherapy or speech therapy! You see apparently they would not ‘add value’ to what he already receives, which in…

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Supporting my local Autism group

We all know that autism services are being slashed to the bone, it’s being left to charities and other autism parents to fill the gaps left behind. I’ve been lucky that we have a really fantastic local group Awareness For Autism who provide help and support ranging from monthly coffee mornings, autism specific soft play mornings at the local soft play centre, children’s parties at Christmas, Easter etc. and many other opportunities for the autism community to get together.

This year they are also fundraising to provide local schools with iPads to use with autistic students and I’m hoping to help by offering the Amazons a chance to win this wonderful necklace designed and made for me by Sparkle Studio.

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For every £1 you donate through this GoFundMe I will allocate a ticket number then at the end of February all numbers will go into a hat (or tin, or pot – depends on what’s to hand!) and Whirlwind will pick a number out to receive the necklace.

Honesty and Heartbreak

Read this article, look into Emelie’s eyes and I bet you’ll NEVER use the R word again

Emelie's Voice

I am late to this game but I’ve taken time to figure out my own views on this. Just when I thought I knew what I was going to write, I wanted to talk to Emelie and get her viewpoint. I wanted to see if this has ever affected her. What she had to say broke my heart as a mother, made me angry as a human being, and it makes me want to protect her all the more. Her words and mine make up this blog.

Let’s end the use of the “R” word. For those of you who are looking at that “R” going what word exactly is that, it’s retard. The dictionary definition of it is: retard 1. a slowing down, diminution, or hindrance or Slang, Disparaging and Offensive reflecting 1. a contemptuous term used to refer to a person who is cognitively impaired or 2. a…

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YOUR PDA QUESTIONS ANSWERED (part 1)

The lovely Julia at Me Myself and PDA gives us an insight into living with PDA

Me, Myself and PDA

Over the past few months many of you have submitted questions to me and in this post I’m going to try and answer them as best and as honestly as I can. I hope that my answers will give you a little bit more of an insight into PDA, and in turn your own children, but most importantly offer that ‘ray of hope’ that we all seek, so here goes nothing….. 🙂

Carolyn – How does your attitude to being told to do something differ from when you were a child?

My reaction depends on so many different factors like my mood at the time, who is demanding something of me, why they are doing it and how often they’ve made demands of me before. All these factors, and more, play a role so this is a difficult question to answer. If it’s a ‘needed’ demand like hospital staff telling…

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Another Statistic to the New Taboo

Another statistic, Susan Dunne, 56, who shared her home with 19 year old autistic son Patrick, lived in the rural heart of North Kerry, Ireland and was found dead in her home.

Autism Activist found dead

Whilst there is very little information currently released the fact that her son’s age and the matching age of the suspect arrested are the same the report appears to hint at a meltdown too far ending in the most terrible of ways. I hope I am proved wrong but anyone who has read The New Taboo will know that this is one of my big worries for The Whirlwind. A child who has violent meltdowns can grow into an adult with no concept of the damage they can do. If my worst fears around this tragic death are proved right I can only hope that the courts are lenient and understanding with Patrick, that it leads to more people admitting that they are victims of parent abuse and that this new taboo is taken seriously at last.

UPDATE: whilst writing this post it has been announced that the man arrested was Patrick Dunne, how I wish my initial suspicions had been proved wrong.

Son Charged Over Death

UPDATE: Further details released.

Impromptu Autism Awareness Demonstration…..coming soon to any crowded place near you!!!

Just a quickie folks but it struck me this at the dentist this afternoon how far I’ve come, mentally and emotionally, in just four months.

The Whirlwind was on form in the waiting room, running up and downstairs, singing opera to the other patients, hiding and crawling under sofas, being a werewolf and attempting to abscond all interspersed with the kicking, hair pulling and punching mum routine. The old me would’ve been frantically apologising whilst struggling to contain this writhing, seething mass of teeth, feet and fists whilst only managing to cause him further anxiety and an escalation in the behaviour. The new me kept a smile on her face and a calm soothing voice whilst simultaneously keeping everyone safe and The Whirlwind reasonably contained and ignoring ‘those stares’.

I also took the opportunity to raise a smile AND awareness in the waiting room by announcing to all, as we corralled The Whirlwind into the dentist’s room, “It’s ok folks, I’m not charging for today’s autism awareness demonstration!” I’m pleased to say that the majority of the other patients did indeed give me a smile at this!

If you find yourself in a similar position try it, they’re staring anyway so it’s not like you’ll suddenly BECOME the centre of attention – you already are, so go with it and use it as a way to educate others about these invisible disabilities, maybe then one day we WON’T be the centre of attention when our child melts down in public!

NT/ASD – Daily Routines, part one – Making The Bed

NT – remove linens from the bed and place in wash basket, remove clean linens from cupboard, fit bottom sheet onto mattress, place quilt into quilt cover and pillows into pillowcases, arrange pleasingly on the bed, scatter cushions optional. Take wash basket downstairs, place linens in washer, wash, dry and iron linens, fold and place in cupboard until needed.

ASD – remove bedding from the floor of whatever room the quilt and cover has been dragged to, ensuring child is not wrapped within it cocoon-like, return to bedroom and remove what remains of the bottom sheet from the bed, if you are lucky this will be dry and free of suspicious marks and may even have been fully or partially removed for you during the night. Search the house for the pillows, not forgetting the dog bed, under the stairs and the little cupboard he has appropriated as his ‘den’. Remove pillowcases, search for pillowcases that had already been removed, make mental note to buy new pillows, throw the suspiciously stained ones away. Go to cupboard for clean linen, realise from hand prints that you are not the first to do this, search again for the what-was-once-clean linen whilst hoping it is still reasonably clean, find linen – breathe sigh of relief that while a little dusty and extremely crumpled it is clean enough, think “it’ll do, it’s not like anybody else will see it!”. Place bottom sheet on bed, place quilt into quilt cover, remove quilt from quilt cover and remove Lego pieces from quilt cover, replace quilt in quilt cover, check pillowcases for Lego pieces, place pillows in covers, throw quilt and pillows haphazardly on bed – knowing that by lunchtime they’ll all be on the floor again anyway. Sit on bed for a breather, realise something doesn’t feel quite right and remove all bedding from the bed again. Check mattress, no not that, raise mattress tentatively, drop mattress, find toolbox and retrieve hammer, nails etc. return to bed and remove mattress, repair and replace bed slats that have been broken – wish you could blame it on the adult style of bed gymnastics but knowing THAT’s just wishful thinking, make mental note to have the talk that starts “Mummy’s bed is NOT a trampoline” again. Replace mattress and bottom sheet, decide to save time and leave quilt and pillows on the floor anyway. Realise in the evening that you forgot to put the linen in the washer and make mental note to make that your first job in the morning…….hopefully………