I don’t have the words …… Please pop over and lend some Amazon strength to Sky x
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.
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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Still Taboo
I try to stay positive and light hearted for you guys, I really do but sometimes reality sucks. Only day three back at school after half term and this is just part of the aftermath of his school refusal. Somehow, alone I managed to get him into the taxi (still in his pyjamas as he’s past the age of me being able to physically force clothing onto him, with his clothes and shoes in a bag) only for his taxi to return less than five minutes later as he’s attacking his escort and it’s ‘unsafe’ for them to continue! Nobody in ‘authority’ seems to care about whether it’s safe for me or Whirlwind while they all continue to pass the buck about who can or will provide services and support. I’m sorry if I offend anyone but on days like this I really can’t ‘see the positives of autism’, today I hate autism and what it’s doing to me and Whirlwind.
I’ve written in more depth previously about the abuse some autism/PDA parents suffer at the hands of their child, The New Taboo , and about the tragedies that can, and do occur when those who should be helping don’t, There But For The Grace Of God and Another Statistic to the New Taboo but authorities still refuse to accept that this is happening, all over the world to hundreds, if not thousands, of parents right at this very minute.
UPDATE 20/2/15
Knowing that Whirlwind’s violent outbursts are predominantly triggered by “fight or flight” and that his preferred response is “flight” I was determined that I would not be pressured (either by school, taxi or bystanders) to force the issue today. The result was that the second I opened the door to take him to the taxi he bolted! Trying to follow him or ‘drag’ him back only leads to “fight” taking over so I tried persuasion and lowering demands, whilst we didn’t get a violent meltdown neither did I manage to get him into the taxi! So, another day of school refusal from him and another day of house arrest for me!
A Week of Firsts and Feels
Well, like many autism parents I approach school holidays with dread. The change in routine, being almost housebound for the duration and the fact it’s just me and Whirlwind for most of it – it’s not surprising sleep patterns are disturbed, snappiness takes over and meltdowns are a daily event…….and that’s just me!
When Whirlwind was at our local infant school I’d got the holiday planning down to a fine art – for the month beforehand I’d stock up on non-perishable groceries and household essentials leaving fresher items to be bought online and delivered once a week, various low-stress activities planned and organised and one day of respite for me each week and despite it not being perfectly calm we’d manage the holidays without either of us being hospitalised or arrested so I’ll take that as a win in my parenting box!
Obviously this routine and planning went out the window during the two years that Whirlwind was without education, there was little difference for us whether it was term-time or school holiday time as he was at home 24/7 for the whole 24 months and since he started at his new school I’ve been struggling to create a new routine for myself.
This half-term I decided that we’d be a little more organised and, due to the progress he’s made since starting at the autism specific school, we’d try a couple of small things out of his comfort zone. Everything was put on his calendar and discussed with him and I can only say that it’s been a resounding success.
Monday – a quiet day at home, mummy needed to do housework in the morning but we had a movie date in the afternoon with a DVD and goodies. Obviously this was always going to be a winner as he was able to entertain himself with Minecraft in the morning and curling up together on the sofa to watch a film is a nice, low stress activity. Success Rating 8/10 (we lost two points here as I let myself get stressed over the fact he is unable to watch a movie without providing a running commentary but this was a fail on my part not his)
Tuesday – another stay at home day BUT with a visit from my daughter-in-law and grandson built in. Again, staying home kept the activity low stress but Whirlwind plus Little Pea (grandson) can lead to hyperactive play from both of them, luckily on this occasion Whirlwind worked really hard to regulate himself with minimal prompting and did a great job of remembering Little Pea is half his age. Success Rating 9/10 – one point lost due to over excitement at the return of The Flash on TV which led to a small meltdown.
Wednesday – today was my respite day and Whirlwind’s 1:1 took him to Wheelgate and I caught up on some bits around the house. Due to the cold Whirlwind asked to come home early (I don’t blame him!) and they played Minecraft in his room for the final hour. Success Rating 9/10.
Thursday – today was one of our ‘experiments in trying something new – a play date with a friend from school. Up until now the only play dates Whirlwind has managed are the ones with Little Pea or Sonic (my best friend’s son, also ASD) and these are only successful as we’ve built them up over several years. Anyway, one of his school friends lives around the corner and, buoyed by the reports of their good friendship at school, I decided it would be nice to try a play date at home for them. Well, what can I say both boys surpassed my expectations for a first visit – there were huge smiles, giggles, co-operative play and turn taking, a true 10/10 success. When school friend’s mum collected him we realised that I’d forgotten that this coming Monday is an INSET day…..oops forgetful mummy moment, thinking that Whirlwind’s taxi and escort may not know this fact I sent a quick text to the escort to let her know, her reply cemented in my mind the fact that she is perfect for her job “hope you have had a nice week and our boy is feeling better, 31 cuddles from me xx”. OUR boy, not your boy but OUR BOY – if I had any remaining doubts about her trustworthiness or caring then they were most certainly laid to rest at that moment, well at least once I’d mopped up my happy tears from reading her reply! 10/10 twice over!
And so we come to Friday and the day of the ‘Big Experiment’ – the dreaded grocery shop (da-da-DAHHHHH). A few weeks previously I’d visited the new Morrisons that’s just opened in our town, impressed by the layout (wide, well organised aisles), lighting and noise level etc I’d decided that HERE was a supermarket that Whirlwind MIGHT just tolerate. So I started dropping little bits of information to Whirlwind and over the weeks we formulated a workable plan, we’d get there early before it got too busy, we’d have a breakfast in the cafe and then we’d have a pootle round the aisles but if/when he’d had enough we could leave. So we got the bus to the shop and made our way straight to the cafe part, Whirlwind was most impressed with the food available (I was most impressed with the ‘bottomless coffee’ on offer!) and completely devoured (in his words) “the best bacon sandwich EVER”.
Buoyed by this huge success (I can’t remember the last time I managed a cafe visit with him) we found the disabled children’s trolley with the big comfy seat (note to Morrisons, even though it was early there only appeared to be one of these trolleys available but they are ESSENTIAL for children like Whirlwind, please consider providing more), Whirlwind strapped himself in and off we went – did I get everything I needed? Probably not but then again I don’t manage that when I shop without him, did we get everything we wanted? Yes, EVEN A NEW TOP THAT WHIRLWIND HAS PUT STRAIGHT ON!!! Whilst queuing to pay things got a bit much and he put my coat over his head to create his ‘safe space’ and block things out but we managed a shopping trip with NO MELTDOWN. The staff there are definitely autism aware and were ready and willing to help in any way they could, even down to checking if he was ok when the door alarm went off nearby and he was clutching his ears! I haven’t managed a supermarket shop with Whirlwind since he was still a toddler and I could hoist him over my shoulder in a meltdown situation but I know that my Amazons can ‘get’ just how huge of a step this is…..in fact, he’s now added to his calendar “Monday – INSET Day, lunch at Morrisons”! Success Rating – off the charts.
In summary this half-term has been one of firsts and feels, it’s proved that being in the right school is making a difference to his stress levels, it’s proved that he now has ‘professionals’ around him who actually care, it’s proved that with planning he is now ready and able to at least attempt things outside his comfort zone and it’s proved that he continues to amaze me with the progress he is making. I’m off to sob happy tears now while he de-stresses with Minecraft – catch you later Amazons x
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.
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.
Backhanded Praise
Every parent of an autistic child has, at least once, been on the receiving end of judgemental comments and I think, over time, we all develop a thick skin and some choice responses to those. They don’t hurt any less but we don’t waste time crying over them anymore. No, the comments that bring us to our knees are the sweet, well-meaning ones, the ones from family and friends who are trying to understand, help and support us but just don’t quite ‘get’ it! Those compliments that, to us, just don’t feel like compliments but more like a reminder that we live a different type of reality to them.
“I don’t know how you cope, I could never do what you do” – really, like there’s an option? What do you expect me to do, send him back for a refund??? We cope because we have to, there’s very little help or support out there for autism families as the “criteria” state they aren’t disabled “enough”. So, we soldier on and we cope and do you know what, if you had a child like mine you’d do exactly the same – we weren’t created/born any differently to you, we haven’t had any special training, there is no “How To Be An Exceptional Parent” book that is only given out to the parents of Special Needs children – we’ve muddled through, made mistakes, learnt through trial and error and accepted a ‘new normal’ for our lives.
“It must be so hard, you’re doing an amazing job” – my answer to number 1 also applies here but I’d also add a “No shit, Sherlock” to it – yes it’s hard, we’ve had to completely change our expectations and our view of normal but until you pointed out how hard it must be I’d almost been able to forget that my life isn’t the same as yours! See, that’s what I mean about our ‘new normal’ – it IS normal to us, we don’t think about the fact that nine times out of ten we’re only reasonably functioning human beings thanks to caffeine…..lots and lots of caffeine, we’ve forgotten what it’s like to fall asleep before midnight and wake barely two hours later – it’s amazing how little sleep your body can become accustomed to, it’s become second nature to only leave the house during school hours (school being the only ‘respite’ most of us get).
“It’s great that he can speak” – yes, I get your point but there’s a difference between your version of verbal and ours. He has a vast vocabulary – hell, at four he could explain in great detail about how Doctor Who’s regenerations worked and the name “Raxacoricofallapitorious” rolled off his tongue like your four year old saying “Teletubbies” but hold a reciprocal conversation? Tell me what he’s done at school? Explain how he’s feeling? Then no, in those important ways he’s NOT verbal and have you ever tried watching a film with a child who has to pick apart, examine and question EVERY SINGLE SCENE? Let’s just say cinema visits are now a no-no unless gags are made socially acceptable!
Trust me there are loads more I could bore you with but it’s half-term here and I’ve been summoned for a conversation about Minecraft – this won’t be an actual conversation as you’d recognise it though, it will consist of Whirlwind repeating the names of the Pokemon in his world and listing the attributes and powers of each one, variety may be added with little snippets about when Dan TDM, Stampy or GMob played a similar world – aren’t you just a teeny bit jealous of my exciting life? No? Not just a little bit? Oh, ok then – catch you later Amazons xx
Why being an autism parent is akin to being a house elf!
In common with most autism parents the extent of my ‘social life’ is conducted through social media, most notably good old Facebook! Over the past couple of years I’ve made some fantastic friends who I view as surrogate family, we’ve laughed together, cried together, made plans to kidnap male hotties for our very own island getaway if one of us wins the lottery.……well, you get the idea! Today one of my surrogate sisters (and fellow matriarch of our group – don’t worry we keep the younger members in check….yeah, right, I think you all know me better than that by now!) posted one of the most hilarious (and true!) daily round ups I’ve ever read and she has very kindly agreed to let me share it with you Amazons.
So, without further ado I turn the page over to Mrs Dobbie, the house elf …
“Been wondering recently how I’m always exhausted and thought back to what I’ve done today.
6.30am rise and shine! Get The Queen of Sheba (ASD) up. Give her breakfast, then get her washed, clean her teeth, hair brushed, dressed etc.
7.20am she’s off to school. Yippee! Freedom! But first….put the washing on, have breakfast, have verbal intercourse with Mr Dobbie, even though I hate talking to ANYONE in the morning. Quick shower, get dressed for work. Hang washing out.
9.15am leave early as I have a 9.30 appointment with the case worker at Community Care. Lucky it’s in the same building as my work because at 10.20 I had to excuse myself or I’d be late for my shift. Further meeting organised for 9.30am next Monday.
10.28 signed into work. Remind myself not to make eye contact with any customers while I’m on the shop floor, therefore keeping verbal intercourse to a minimum!
1pm time for my 15 minute break. Yahoo! Me time! Oh, but first I have to go to the bank to ask them why they have deducted a $395 admin fee from my account. Have had to make an appointment to see my personal banker (WTF) on Wednesday.
1.20pm have gone over my official break time, but f@€k it I NEED A COFFEE. Am starving so decide to add a nutritious and healthy cream bun to my order.
1.25pm managed to stuff cream bun in my gob in two bites. Gulped the coffee down. Thankfully the barista doesn’t believe in making hot coffee so there was no chance of me scalding myself!
2.05pm Daughter Dobbie calls me with some drama or other. Have to be a bad mum and tell her I’m at work, the place I am at that time every Monday, but she never seems to remember that, so can’t talk to her. Promise to phone her back later on when I get home.
3.30pm knock off time! But first, better buy some groceries, after all I’m in the store anyway.
4.05pm Mr Dobbie calls me while I’m walking home, with 4 quite heavy bags. “Where are you? What’s taking you so long?”. Aww, bless his heart, he’s missing me. I’m hoping by this stage my pretties that you can all hear the sarcasm dripping from me!
4.15pm home sweet home, and if he dares even hint at the thought of a quick ‘naughty’ before the school bus arrives I will f@€king deck him!
4.30pm sitting on my a*$e having a cup of tea and a boiled egg on toast because a gal can’t get too much of the good life!
5pm well enough of being a lazy git. Time to run around like a blue a*$ed fly making sure everything is to the high standards expected of the Queen of Sheba.
5.20pm bring the washing in while Mr Dobbie puts the finishing touches to the queens nightly feast.
5.29pm there goes the school bus horn. No more shilly shallying. It’s all systems go now. She does a once over quick inspection while Mr and Mrs Dobbie anxiously wring their hands in fear of having misplaced something. All good and queenie allows herself to be enticed upstairs for a bath.
6pm bath finished. No time wasters allowed in this house! Back downstairs for a scrummy calorie dense dinner provided by the ever subservient (but only to queenie) Mr Dobbie.
6.30pm the boss has taken herself off to her room. At last! That promised Me Time! Not so fast! Off to the kitchen to cook a huge batch of bolognese. While that’s cooking I decide to make Son Dobbie some corn fritters for his breakfast. Talk of the….in comes Son Dobbie who then proceeds to devour half the bolognese. Oh, and yes the fritters will do nicely for his breakfast. How do I know this? Because he also ate half of them!
7.50pm F@€k the dishes! I’m going to watch an episode of The Killing while working my way through a family bar of chocolate! I know how to show myself a good time!
8.05pm phone rings. Don’t answer, don’t answer, don’t answer. Too late! My melted chocolate covered fingers went onto autopilot and picked the f@€king phone up. Traitorous little b@$tards! F*€k me, it’s Daughter Dobbie! I truly am a despicable mother!
9.40pm unfortunately had to end call as battery on phone was ready to die.
9.41pm get Queen of Sheba’s clothes and schoolbag ready for the morning.
9.47pm that’s it! I’m calling it a day. Pass the kitchen on the way to the peace and sanctity of my bedroom. Kitchen looks like Ragnar and his gang have taken a wooden spoon to it. I’m very tempted, but decide I’ll only hate myself in the morning, so in I go to clean up the debris.
10.25pm. I really need a shower. Nope! My ablutions consist of cleaning my teeth. That’s it! I’m done in!
10.30pm I think I’ll tell the girls all about my relaxing yet fun filled day ”
Honesty and Heartbreak
Read this article, look into Emelie’s eyes and I bet you’ll NEVER use the R word again
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
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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AutismAmazon 