Disabilities

April was Autism Awareness Month

To round off this very important month

The Importance of Mr Potato Head’s Glasses.

 by Laura Henretty

‘Where are the glasses? Where ARE they?’  7 words. 7 little words. 7 words that strike terror into the heart of the Henretty household. I can picture you sitting reading this, screwing your face up and wondering who, other than Mr Potato Head, cares about Mr Potato Head’s glasses? A little boy, aged 3 and a half, that’s who! Our little boy.

Caidan, the 3 and a half year old in question, was diagnosed with Autism when he was 24 months old. We always knew something was a little quirky about him, even when he was only 6 months old. He would stare at his hands in front of his face, or constantly wave them about in front of his eyes. He was never still. He would lie on his back and kick both legs in the air and smack them down on the floor with an almighty clatter, over and over again. It must have hurt, but he never flinched. 

When he was 11 months old, we decided we needed to see someone as Caidan had missed all his major milestones. He only learned to roll over at 10 months old and even at 11 months he couldn’t sit up unsupported for any length of time. So, we did the GP thing and were referred to a Paediatrician. The word Autism was never mentioned and never entered our head. But we had a follow up appointment booked for 6 months later and at that appointment I walked in and told her that my son had Autism. In those preceding 6 months, Caidan had regressed in his development. He had stopped being able to eat solid food and he was unable to walk. He had lost his speech and he completely ignored us when we called his name. He had no idea how to play with toys and had no interest in interacting with any of us. 

Now, my best friend goes by the name of Google and after much researching on his various ‘symptoms’ the word Autism just kept rearing its head, hence me telling the Paediatrician what I did! Anyway, long story short, he was assessed by the specialist team at our Children’s Hospital and was formally diagnosed with Autism on 8^th July 2011.

‘But what about the Mr Potato Head glasses??’ I hear you cry!! Well, often, people with Autism can have an attachment to a particular object. It’s like their comfort. It makes them feel safe and secure and without it they get frustrated and anxious. Mr Potato Head’s glasses are Caidan’s ‘comfort.’ He rarely has them out of his hands when at home. I don’t think I have a photograph of him without these little yellow glasses in his hand! We have ‘a pair and a spare’ at home, in the hope that we will not have a glasses emergency. But it has happened. For 3 days last month we hunted the house, high and low, with no sign of either pair, thus resulting in one very unhappy little boy! Thankfully the lovely lady selling a Mr Potato Head on Ebay was very understanding and she posted it out almost immediately. Then another lovely young lady on Facebook, also with autism, found a pair in her bedroom and promptly sent them to Caidan. So we are back to having a pair and a spare again, and somewhere in the house there are 2 pairs of Mr Potato Head glasses, which may or may not be found!! So, you can see why, when we hear those 7 little words, that we all jump up and start searching, hoping against hope that the glasses are under the footstool, or in his bedroom, or in his toybox. Caidan is not the world’s best at remembering where he has thrown something, so he is absolutely no help!
So now you can see the importance of Mr Potato Head’s glasses. If anyone has any that they don’t want, all contributions are gratefully received!!

As far as Caidan is concerned now, a year and a half after his diagnosis, things are hugely different! His speech is fantastic; he can eat the same food as any other 3 year old. I say ‘can’ because he can, but chooses not to, although he eats lots of fruit, he prefers pizza and chocolate buttons above all else!! His Autism still presents and always will present many difficulties. His social skills are pretty poor, his independent skills are not great, but in every way, every day, we see improvements. We are hopeful that in the next couple of years he will be doing many more things for himself. Autism has also given him an amazing memory and capacity for learning. He could recite and recognise the numbers 0-100 by the time he was 2 and a half. He can say and recognise the whole alphabet AND tell you words that begin with each letter. He can name you almost any animal that walks this planet from a picture. 

Caidan has Autism but Autism does not have Caidan. It is only a part of who he is. He has his own personality, his likes and dislikes and a very strong will!! He loves cuddles, gives great eye contact, he can now start a game or a conversation, he initiates play and loves to interact with adults especially. In many ways he is just a typical 3 year old boy. In other ways, he is so much more than that! He is our pride and our joy. Our little warrior. And we wouldn’t change a thing about him. Not for anything.
Except maybe the reliance on those damn Mr Potato Head glasses! 

A massive thank you to everyone who contributed to this page throughout April. Between us, we have touched many people and helped some understand a little more about autism. There is a very long way to go and autism awareness is continuous. 

National Autistic Society 

If you'd like to contribute a guest post for this page to raise awareness for autism, please send it to me at crystal.jigsaw7@btinternet.com

New or old posts, previously published or not. Would love to feature you if you're passionate about autism. Thank you

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A few posts for you to read written by autism parents:-


Nixdminx
The Sibling's Perspective


It's a crazy world 
What Autism Means to Us


Aspie in the Family
Reflections on Autism Awareness Month


Savette
Give Autism a Chance

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Post No. 5

Wake Up and Accept
a very powerful post this week by Nicola, mum and autism advocate

I'm usually a positive person, but I have to say my piece. It’s 2013 and yet there are still some people in this world who genuinely believe that ADHD and Autism don't exist! That there’s no such thing, that it's an excuse for bad parenting, that our children are "brats", and the latest one I came across ... that it's over diagnosed so that parents can medicate their children because they are too lazy to be a parent. I’ve personally come across these comments, and I’ve seen endless comments like this over the internet. 

First of all, ADHD and Autism do exist, they are not some modern made up “excuse" for bad parenting. Also, in terms of them being "over diagnosed for medication purposes" because we are "lazy parents" ... do the people who think this actually believe it's that easy to have your child diagnosed with ADHD and/or Autism? ... it can take years, years of waiting, reports, observations, tests ... not forgetting years of heartache, not knowing for sure, wanting desperately to help and support your child ... do these people have any idea how devastating it is, how heart breaking it is to learn that your child has Autism or ADHD? How it feels to have people who have no idea call you "lazy" or "a bad parent" or your child a "brat"? ... do these people think we just drag our kids to the nearest doctors and after 10 minutes we get handed a certificate declaring "congratulations! your child has ADHD or Autism! here's your excuse to be a lazy parent, and here's some pills!!!" 

ADHD and Autism impacts hugely on peoples' lives, on their families' lives, every single day. I don't understand why some people are so intent on offending and hurting people with ADHD or Autism and their families with their "there's no such thing, it's bad parenting" opinions. Is it because they can't "see" Autism or ADHD? Possibly, but just because you can't "see" it, that does NOT mean they are not real! I wish people who genuinely believe this would wake up, open their eyes, and try to comprehend how challenging living with ADHD and Autism is. I know they will never truly understand, I don't expect them to, but like I said, it's 2013, and whether people can acknowledge and accept it or not, ADHD and Autism are very real, they exist. I just wish these people would stop labeling us parents as "bad parents" and our children as "brats" and try instead to acknowledge our world, try to accept and try to understand as best they can. I don't think that's asking too much is it?

You can find Nicola on her blog Looking In/Looking Out

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Post No. 4

My Son, Max
by Marylin Gilmour

My awareness to what autism is was thrust upon me nearly three years ago, along with Max’s diagnosis. And since then, I’ve learned more than I ever thought I’d need to about it.

I’m here to explain to you what autism means for my son Max, who is considered severely autistic, his older brother who is what we autie parents call neuro-typical (i.e. with genetics and synapses firing at the statistical norm, for lack of another way of putting it), and me, his mama, carer, and number one fan.

Max has always been different. He screamed *all* the time as a baby. But it wasn’t colic.

Now, as I look back, I recognise the signs of being in total sensory overwhelm. Max is particularly sensitive to sound, certain touches, and bright lights. He hates sunny days unless he has sunglasses on. On the other hand, when he needs to calm down, he needs to over-stimulate his touch and proprioception, to the point that he will throw himself around at the furniture. It’s like he needs to thwack his hands onto his jaw and head really hard just to know he’s there.

These days the act of hitting himself and throwing himself at furniture/toys/me is usually when he’s upset, melting down, seeing red. It’s his way of trying to calm himself down. Like when you’re absolutely SICK to the back teeth of the works going on outside your home for the last month and have to blast your music really loud just to drown it out. Mostly so you won’t end up going out there and screaming at them to just bugger off so you can think. That’s how I interpret it anyway. And that’s Max’s other main difficulty.

He’s 5 and a half years old, and non-verbal. We use visuals called the Picture Exchange Communication System (PECS) to communicate with each other. I can set up routines to show what’s coming next, and he uses them to have to ask (and attempt to verbalise) for what he’d like. This is a HUGE step forward from him having to point and me guess what it is he’s asking for, let me tell you! In fact, over the last two months since we’ve fully integrated the PECS at home as well as nursery, the difference in Max has been amazing.

You know he finally called me “Ummy” IN CONTEXT the other weekend for the first time ever? Yes, the FIRST TIME It took 5 years and nearly 6 months for me to hear my baby boy call my name. And oh my I did cry, I can tell you that! You see, it’s all these little things that are the most wonderful breakthroughs.

The things that I took for granted with Zack are the same things that Max can find really difficult.

You can find Marylin and her lovely family on her blog, Softhistle

and on her Facebook page

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Post No. 3

The Signs
by Kathryn Brown

Children can be diagnosed with autism at a very young age, depending on their severity. But many parents and professionals alike still struggle to recognise when a child might need intervention such as assessments to determine a possible condition. No two people with autism are the same – just like no two people on the planet are the same. We may portray similar traits, expressions, little quirks that others can easily relate to, especially other family members, but autism is an incredibly complex condition to diagnose mainly because there are so many different symptoms to recognise.

For example, when Amy (my daughter) was two, she showed signs of behaviour that was perceived as ‘odd’. To me she was simply Amy, but to others she was a child who did things differently. I didn’t have any other children to compare her to though there were aspects of her character that made me think. One of the first traits Amy developed was to pretend she was a dog and hide under the table at nursery, barking at people as they walked past. At first it was funny and used to make us smile, until we realised this was the only way she felt confident enough to communicate. Then one day she became obsessed with flooding the toilets; she would (and often still does) watch the water flow, fascinated by it, until it overflowed onto the floor making her laugh. Hardly a day went by when I wasn’t told “Amy’s flooded the toilets again.” There were so many other signs that had passed me by in those early days but I was lucky because staff at the nursery were experienced with special needs children and knew what to look for. They’d had their suspicions for some time but apparently it wasn’t their place to tell me she might be autistic. Whether that’s changed now I don’t know, but as the staff were personal friends of mine, they did speak to me in confidence, expressing their concerns, and the word ‘autism’ was mentioned. Back then I had no idea what autism meant. It didn’t scare me. What scared me was that my baby had been showing signs of having a possible condition and I’d missed them, or maybe I’d just brushed them under the carpet.

If you’re worried about your child and they are demonstrating some, or all, of these signs, my advice is to consult your GP and insist you see a specialist. GP’s don’t know enough about autism and even though ours is a wonderful doctor, he wasn’t clued up enough to give us any advice. We saw several specialists, professionals, psychologists, special needs assessors and the process went on for eighteen months before Amy was finally diagnosed with autism. She was three and a half. We were lucky because Amy was young enough to receive maximum intervention and this has held her in good stead – now she attends an amazing special school. Many parents aren’t so lucky; they don’t have the support or the professionals to back them up, they don’t have someone to help them determine the signs to look out for, nor do they feel confident insisting they are referred to a specialist. Sometimes we need second and third opinions and we need to fight for them. I don’t want anyone to fight for a diagnosis and if you have enough information beforehand, i.e. you’ve done adequate research, then you will most likely be heard. Should you just walk into the surgery and say you think there might be something wrong with your child, won’t give the doctor enough information to go on. I know people who have children aged 8 upwards whose child doesn’t have a statement and therefore doesn’t receive support, simply because they don’t think they will be heard by a so-called professional.

Please study the poster. Like I say, every single one of these traits is in Amy. 

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Guest Post No.2

Can You "See" Autism?
by Steph Curtis 

So what does autism ‘look’ like? A difficult question to answer really, being as it is generally labelled a ‘hidden disability’. Our daughter Sasha was diagnosed with autism, or ASD (Autistic Spectrum Disorder) as it is also known, when she was just 2 and a half years old. She is now nearly six and I’d like to share with you what autism means with regards to Sasha.

Sasha's speech was delayed, and that was the reason we were first referred to a paediatrician. We didn't have many worries about her behaviour back then - we knew she was strong-willed, but so are many toddlers, right? Now she has pretty much caught up to her peers in terms of speech. She can have a conversation with you, although she is prone to going off at a tangent or steering the conversation round to what she actually wants to talk about. Her sounds are not totally clear - she struggles with 'S' and 'f' for example, and her grammar can be a little unusual - most past tenses have extra 'd's on the end, like gonded instead of gone, sitted instead of sat and 'I maded it happen'. Gone are the days though, when she used to call Tamsin 'Gah-woo' (probably due to her difficulty with 'T' at that time!), and when she constantly mixed up 'he' and 'she'. Recently she has taken to saying inappropriate things a little too loudly at inopportune moments - like 'look, there's a little mummy!' within earshot of a fully grown woman who just happens to be slightly shorter than most; or my personal favourite, when she was in the pool changing rooms with daddy, and standing next to a boy her own age with no clothes on, 'look, there's something popping out of his bottom!' with her finger pointed directly at and only centimetres away from said object. For more of Sasha's funny expressions, see my previous posts Sasha-isms, Sasha-isms part deux and Sasha-isms Part 3.

Sasha's strong will is probably what sets her apart most from other children. It's an extreme of behaviour that can be really difficult to cope with. Often her reactions are driven by sensory issues - too much noise, too many people, physically uncomfortable places or clothes will all cause her to withdraw herself or meltdown. Fortunately, the meltdowns happen much less frequently these days, and we believe that Sasha is becoming more aware of issues which will cause her problems. A lot of the time though, it is either her fear of a situation or the lack of control which drives the extreme reactions. Her inability to be like all the other children and just join in with group requests is definitely the autism in practice.

She is sociable, but doesn't understand the rules of being social. In the playground she is happy if she is leading the game and others are following her rules, but she is not happy to be directed or led by others - 'give and take' is still an ongoing lesson for her. Likewise, in the classroom, she is happy to stand up at the front of class and give the other children orders, like 'put your coats on children, and remember to do the zips up', but she is not happy to be one of the pack and listen to others giving orders. Yes, there may be other children in the class who are not happy with that either, but the difference is that Sasha will noticeably refuse, or withdraw, or become agitated. She likes routine - but only if it is of her choosing, and on a good day she is fine even with unexpected change, if it is explained to her. She has been described as having 'subtle control' in the classroom.

Sasha is our bundle of joy - quite a big one these days! For breakfast she has a mini pepperami, followed by Weetabix then 'mummy toast' (toast with just butter as opposed to marmite like daddy has!), then a banana (which has to be green, not yellow). Then she'll follow that up with her lunch of 'four cheese sandwiches, 10 crisps and chocolate please' at about 10am when at home - I've no idea how she manages to hold out for school dinner. For the rest of the day she will declare she's hungry at regular intervals but rarely eats any hot food other than chips. She is definitely a creature of habit as far as food goes and it's a long struggle to get her to try anything new - although, in a 'typical child' kind of way, she will eat brown bread or all the crusts on her sandwiches if at someone else's house or a party. Still, her food inflexibility at home doesn't seem to be doing her any harm!

She is happy nearly all of the time, she is very loving, she is always polite and helpful, she is curious, she is not materialistic, she has lots of energy, she loves using different languages, she is caring and she is often extremely funny. We never have a dull moment with her around and we love her to pieces. Autism is not a bad thing, it's just different. Different, not less.

You can find Steph Curtis and her lovely family at her blog Steph's Two Girls

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Guest Post No.1

What is ‘normal’ anyway?

by Laura Henretty

So, we are into April. You know what April is right? April is Autism Awareness month. But you are aware of Autism, aren’t you? You have all heard of it. Some of you will think, ‘Yeah, I watched Rainman, I know all about Autism..’ Some will think ‘Yeah, that’s when they are in a world of their own, and you can’t get through to them.’ Well, technically, you are not wrong in either of those assumptions. However and it’s a big ‘however,’ those are only a very tiny part of the picture. There is a saying in the Autism community which goes ‘If you have met one person with Autism, you have met one person with Autism.’ 

Every person with Autism is different. They all have their own personality (yes, people with Autism have personalities!) They all have their own likes and dislikes and fears and hopes and dreams. Just like you and I. Just like everyone. The main difference they have compared to those without Autism, is that they have to fight to be accepted, as they are, by those without Autism. Sounds really unfair, doesn’t it?

Can you imagine, all your life, people trying to change who you are because you don’t fit in with ‘Society’s’ image of ‘normal?’ Imagine going through life being laughed at and mocked because you are, according to many ‘normal’ people – weird. Yet all you are doing is being yourself but everyone acts like that is not good enough and you must change and be ‘normal.’ Be like everybody else. So, as I asked in the title, what exactly IS ‘normal.’ Who decides?? 

Society as a whole seems to have a real problem with people who are different.  Someone walking along who is covered in tattoos and piercings, is pretty much guaranteed to strike fear into the heart of most people because the image is something that is not considered ‘normal’ therefore this person is very probably about to steal someone’s handbag or eat someone’s pet poodle. Why is that the case though?? Why is different always equated to bad? So someone who has Autism, someone who thinks differently to the majority, whose brain makes them see the world differently, has a life often filled with bullying and mockery and being told they must conform and fit in. Why? Why do they have to fit in? Why do THEY have to change just so that ‘normal’ people can feel comfortable? Because that is all it is, at the heart of it. It’s people who consider themselves this ‘normal’ that demand everyone should be the same, so they don’t feel threatened. Well, perhaps if this ‘normal’ part of Society educated themselves a little more then they wouldn’t feel so threatened by different. Different is good. Different does not mean dangerous. Different does not mean worthless and different most certainly does not mean, in the words of the wonderful Temple Grandin, less.

There are many people, people everyone has heard of that if they were alive today would very probably have been given a diagnosis of Autism. Einstein, Mozart and Isaac Newton, to name only 3. Then there are those still with us who are rumoured to be on the Autism Spectrum. Bill Gates and Mark Zuckerberg (creator of Facebook, if you aren’t aware!) are 2 of them. So Autism has given us many important things in our lives, has it not?? Why would we want to change that? 

I guess the purpose of this ramble is to try and get the message across that just because someone is different in some way, it doesn’t mean they are to be feared or that they are imperfect or abnormal. The world needs different. No two people are the same, regardless of whether they have Autism or not or are tattooed from head to foot or whatever. Everyone is different. Everyone has strengths and talents that are different to other people. You are not the same as me, I am not the same as you. So who says what ‘normal’ is?? Normal is living and breathing and being yourself. Normal is allowing others to be themselves without mockery or bullying or tuts and sighs and stares. Normal is not being the same as the person next to you. So surely then, we are ALL normal, but with differences?

I am not having a go at anyone, because I too was once like that. I used the word ‘weird’ to describe people who were that bit different, who stood out from others, who behaved differently. But since my son Caidan was diagnosed with Autism at the age of 2 (he is 3 and a half now) I have viewed the world in a new way. I no longer have a fear of ‘different’ because I know that it can be wonderful and amazing and inspiring and I now know that they are just like everyone else, with their own quirks and their own personality, just as you and I have! I see my child fighting to make sense of this world every day and I can only admire him for it. But we can all help people fighting to be accepted for who they are, by simply allowing them to be so. It’s easy really, don’t you think? Don’t be afraid of what you might perceive as different. Don’t look down on different; educate yourself about different. Remember, EVERYONE is different and that is how it should be. Different is ok. Different can educate others. Different is inspiring. If you allow it to be. Different. Not less. Never less. You can make a difference to those with Autism and many other special needs, by realising that they ARE ‘normal,’ they are just different from you.

Start today. Don’t be the person that makes it hard for someone else to be themself.

Be aware. Accept. Educate.