This is autism. A response to Autism Speaks.

By now, you have probably heard and read the latest controversy surrounding Autism Speaks. I refuse to give their particular brand of venom any creedence so I shall not link to it.

Here, I am going to tell Autism Speaks what autism really is, to our family anyway, as I cannot speak for anyone else.
It's a pity Autism Speaks don't subscribe to that philosophy also.



This is autism

There is a 4 year old boy that lights up a room with his smile. His laughter is infectious, his hugs are tight and his kisses are wet!

There is a 4 year old boy that loves to jump. He loves to go on a swing. He loves to go swimming and splash about in the water.

There is a 4 year old boy who has big blue eyes that twinkle when you read him a story. He hears it twice and can then tell me the story back. He knows his alphabet, his numbers, his colours and the name of all the planets in the solar system. He knows that a pterodactyl is a flying dinosaur. He can tell the difference between an ostrich and a flamingo.

There is a 4 year old boy that adores nature. He sees every petal on every flower. He sees the beauty of the rain. He loves the wind on his face. He loves being warm in the sun.

There is a 4 year old boy that loves his family and shows that love. He shows it in his eyes. He tells us 'I love you.' Yes, he can speak too. And he is toilet trained.

There is a 4 year old boy that loves watching Disney films. He loves pizza. He loves grapes. He loves chocolate. He loves crisps.

There is a 4 year old boy that sees the beauty in life. Things that others ignore or take for granted.

There is a 4 year old boy that is a human being. He breathes. He bleeds. He laughs. He cries. He hiccups. He runs. He plays. He eats. He sleeps. He loves. He imagines. He lives.

Yes. He LIVES. He does not merely 'exist.' He has a life and he lives it. Noisily, happily and fully.
It may not be the life others expect, but it is just as happy and just as fulfilling.

You see, this 4 year old boy is my son. He is autistic. He fights every day to understand this world which refuses to accept him. A world that refuses to acknowledge that he has so much to offer. He has as much potential as any other 4 year old. In fact, maybe even more, as his brain can hold so much information. Who knows, he may even be the one to find the cure for cancer. Will the world refuse to accept that cure because it was discovered by someone who may have difficulty making friends? Or because he may need help to get across the city on a bus?

There is a 4 year old boy. He holds my heart. He is my pride and my joy.
 I am his mother. I am not broken and exhausted. I am blessed. Blessed to have this sunshine in my life. Fortunate to see the things he accomplishes. Proud of the beautiful, clever and funny young child I helped create.

He amazes us every day. If we listen to you, Autism Speaks, he might as well not be here.
Try telling that to all the people whose lives he touches daily. Try telling that to him.
He has as much right to be here as anyone else. He has as much right to enjoy life as anyone else.
He is not a burden. He is not lost. He is right here, with his family, where he is meant to be. He will never be lost, because he knows just who he is and how precious and wonderful he is. He knows he is loved and accepted by those who matter most. He is not a burden. He is not diseased. He is not hopeless.
He is autistic. He is my son. He is autism.



So, Autism Speaks, you are very, very wrong. So very hurtfully, nastily and sadly wrong.

An open letter to 'Society.'

Dear Society

My son, Caidan, is autistic. I have long since accepted this and embraced it. His autism is as much a part of him as his brown hair. As much a part of him as his laugh. As much a part of him as his little toe which has no nail on it. Yes, there are other facets to Caidan that are not autism, but without autism he would be an entirely different child. I don't want an entirely different child, I want Caidan as Caidan is supposed to be and he is supposed to be autistic.
I really do not care whether Caidan's stimming is deemed as not 'socially acceptable.' I really do not care if his squealing in Morrison's bothers other people. I really do not care if his hand flapping and jumping up and down in Matalan bothers other people. Caidan is autistic, it is what he does.
What I do bother about is the fact that society (in general and not necessarily individually) expects my son to change his behaviours so that society doesn't feel uncomfortable. That bothers me a lot.
My son is autistic. 1 in 100 people in the UK are autistic. I say it is time SOCIETY changed it's behaviour.
Difference should not be frowned upon, nor mocked and it is certainly nothing to be scared of.
Everyone is different. Who says what 'normal' is supposed to be anyway? I have my own quirks and little idiosyncrasies, just as everyone has, and mine are not the same as yours, are they? So that means we are ALL different. So what is this 'normal' that society expects my son to conform to?

My son is autistic. I am determined that he fulfils his huge potential and I will do all I can to help him do so. What I WILL NOT do, is try and 'normalise' him just so society can feel better. Society sucks, let me tell you. Society is exclusive and inward looking. Society needs to buck up it's ideas and move into the 21st Century.

My son is autistic. I will not change him just to accommodate others feelings and sensitivity.
My son is autistic and society is just going to have to learn to deal with that.

I am not going to change my son for the world, but I am sure as hell going to try and change the world for my son and I will continue to do so until my last breath.

And you, Society,  are just going to have to learn to deal with that too.

Yours determinedly

Laura Henretty

Special?? Not me.

Often times, when you tell people you have a child who has been diagnosed as autistic, people will say to you 'Well, special children are only given to special people.'

I'm not having a go here at all, please don't think that. Had the roles been reversed, perhaps I might say the same thing too, who knows?? I know they mean well. I know they are trying to encourage me. I know there is absolutely no malice intended. But why say it?

I am not special, I have never been special. My life has always been fairly unspectacular. Just an ordinary person, in an ordinary home, with an ordinary life. But, now, because I have a child with autism, it appears I was actually special?? It's news to me!
It goes hand in hand with  'I couldn't do what you do' and the 'I admire you so much, I could never do that on so little sleep...'  etc,etc.
I find it is particularly other parents, parents of typical children, who say this.
Couldn't do what I do?? So, we better hope their children are never diagnosed with autism or some other disorder or illness then. Of course they could do what I do. Because they have no choice if they want to do the best for their child. That is all I am doing. I am not some sort of superwoman who should be admired. I am simply a mum, doing what her child needs her to do! I am often tired, I am often stressed, I am often running on empty. Does that sound like superwoman to you?? But if I don't do it (whatever it actually is!) then who will??  Am I not just doing what all good and loving parents would do?

Why does that make me special? It doesn't. It makes me a loving mum who will do everything she can to give her child the best from life he can get and who will fight for his right to fulfil his potential.

Now, if you want to tell me how amazing my child is, that is a different matter. He is the one who is part of a world that is puzzling to him. People are puzzling to him. A language that is puzzling (at times) to him. Yet, he gets through each day. I can see him trying to piece it all together, to try and understand it in a way that makes sense to him. Trying to communicate his needs, his feelings when he really doesn't know how, yet he tries anyway, and often succeeds. Now THAT is amazing. THAT is special.
I am merely his sidekick. He guides me. He teaches me. Not always the other way round.
He is worthy of praise and awe.
I am not, I am merely doing my job as a mother. Nurturing, protecting, loving and fighting for my child.
I am no different from any other loving parent.

Except maybe a bit more tired, a bit more stressed, a bit more worried about the future and a bit more judged by others.
But no more special.

10 promises I will make to my child with autism.

1. I will always fight for you.

I may not always be the most confident person, but when it comes to you, my child, I will take on anyone I have to, no matter how much more educated or knowledgeable they think they are, or how powerful they might be. I will fight for you and your needs. Always.

2. I will always believe in you.

I believe that you can achieve so many things. They may not seem much to others but to us, they are things worth celebrating. I believe in your ability to learn if you are taught the correct way. I believe you will shine in your own way and in your own time.

3. I will always be your safe place.

When things get too much and you feel anxious and alone, I will always be your safe place. Somewhere familiar and comforting to you. Whether you want a hug from me or whether you just want to be in the same room. When you need somewhere that is safe and secure, that place is me.

4. I will always love you for who you are.

 How could I do anything else? You have never changed, you have always been you, just the way you are and I will always love you for you. Anyone else would be a total stranger to me. I love you for you, always have and always will.

5. When I am told you will never do something, I will take that as a challenge.

Unless they are issuing crystal balls with qualifications now, then no one can tell me what you can't do. It will never stop us trying together and we will prove them wrong in many things.

6. I will always embrace your autism, and never be ashamed of it.

I want YOU to be proud of who you are and to be as happy as you can be in your own skin. That means you have to embrace who you are and I have to teach you by example. Autism is a part of who you are and we need to embrace it and accept it. Fighting it is no good to you, we have to work with it.

7. I will show you the patience you need.

I promise I will always be patient with you, even in those times I get frustrated for you. I will help you try and communicate your needs, I will listen to you with my heart. I will always give you the time you need to say or do what it is you want to say or do.

8. I will let go of any guilt I may feel.

No one knows for sure what causes autism, but I will not feel guilty. To my knowledge, I did not cause your autism and even if it transpires that something I did contributed to it, then what good would it do you if I torture myself about it? You need me to focus and if I am busy blaming myself, then it is me I am focusing on and not you. Guilt would only hold me back from being everything you need me to be.

9. I will always go with my instinct.

When it comes to you, no one knows you better than I do. I will never be told what is best for you by anyone. I will listen to what others have to say but I will always be guided by the fact that I know you best.
 A mother's instinct should never be ignored and I promise I will never ignore it.

10. I promise I will always be filled with pride and amazement for you.

Every mother has pride in her children. But with you, knowing how hard you have to fight just to get through one day unscathed, that pride is somehow even stronger. I marvel at the way you navigate through life in what must seem like a foreign place to you.
You are amazing and I promise you always will be and I promise to try and make you understand how amazing you are. Someday.

All my love

Your Mama

A response to 'Pissed off Mother' in Newcastle, Ontario.

Dear 'Pissed off Mother.'

Firstly, my apologies for not addressing you by name, but seeing as you did not have the courage to sign the nasty letter that you sent to one of your neighbours recently, I have no choice.

There is a woman in your street, a Grandmother, who looks after her autistic grandson sometimes. A Grandmother doing what millions of Grandmothers around the world do. Looking after her grandchild. I am sure you will do the same for your grandchildren one day.
However, this Grandmother had her heart broken by words. Words that YOU wrote to her.

Her grandson has autism. He didn't choose to have it, nor did his family choose for him to have it, it just happens. To 1 in 88 people. Autism happens. You have no idea what it is like having autism in the family.
It is sleep deprivation, it is fear for the future, it is having to put up with judgements on your parenting skills and seeing stares, head shakes and hearing comments like 'Why can't you control your child' or 'You should just keep him locked up at home.' But, it is also sheer amazement at how our loved one with autism navigates through this world which is so strange and crazy to them. It is the celebration of the achievements, things that we were told our loved ones would never do. It is watching them beat the odds and fulfilling potentials. It is love, patience and wonder.

You wished that child dead. A child. You wished a child dead. What kind of place must your mind be? What hope do your own children have with a mother who would wish another child to be 'euthanised' simply because they have special needs?? That takes a special kind of evil. But to actually write that to a member of that child's family? What kind of person could ever do that?

I feel sorry for the family who you hurt so badly with your cruel, heartless words, but I feel more sorry for you. That child did not choose to have autism, but YOU chose to be unbelievably callous and write that letter. I feel such pity for you. Imagine having  to live with that kind of evil in you. I am so sorry, really I am. Your heart must be such a black and dark place.

No, that child did not choose to have autism, but I bet, given the choice of that or being the kind of person you are, most of us would choose autism. I cannot imagine anything worse than having a soul so devoid of compassion that you would wish a child be euthanised simply because they have special needs.

I also feel sorry for your children. What kind of morals are you instilling into them?? Are they going to grow up lacking any compassion and empathy for anyone who isn't, as you put it 'normal??'

If you are the poster girl for 'normal' then I'll pass, thanks. But I think you will find that most 'normal' people are appalled by your actions. It is you that is the scourge of our world, not people with autism, or any special needs or disabilities.
You say that we families with special needs children want special treatment. Actually, all we want is to be able to get on with our lives without us or our loved ones being judged or frowned upon or laughed at or mocked. Is that REALLY too much to ask?  You let us get on with our lives and we will do the same for you. Sounds like a good way forward, doesn't it?

I sincerely hope your life is never touched by autism or any special needs. I say that because I would hate for any child with those needs to have to put up with you in their life. It is hard enough for them without having a family member who has your sickening attitude.

I fear that the end result of this will be that it will be YOU who has to move out of your neighbourhood. From the news reports I have read, you are not the only 'pissed off' person there, but it is YOU they are pissed off at. I guess you never really thought this through, did you?

Karma, they tell me, can be a real bitch. I hope for your sake that she is lenient on you. It is punishment enough for you to have to go through life with such a nasty, cruel heart.

I wish you no ill, but I wish you enlightenment. Educate yourself about autism. Go and meet some people with autism. See how wonderful and inspiring they are. God knows you could do with some inspiration right now.

Yours

Laura Henretty - A mother of a child with autism, who has every right to be pissed off at you and who is not afraid to sign her name.

Lessons being an autism parent have taught me - a lighthearted look at autism parenting.

When you look on the internet, on Facebook especially, there are no shortage of inspirational memes and poems about autism. They tell us how it has made us as parents better people, or how we are blessed to have someone with autism in our lives. You know the ones I mean. Now, I love these inspirational postings, heck, I have even made memes along those lines myself, BUT, sometimes, it does the soul much good to take a step back and look at the lighter side of autism parenting. The side we live every day. The side we can all  identify with but sometimes feel guilty at smiling about. Well, I don't feel guilty and neither should you. This is our life, and if we want to have a laugh about it at times, well, that's our right.
I made a meme the other day, in a tongue in cheek, lighthearted way, and it went down a storm. People were reading it and nodding their heads and smiling, knowing that  the person who made it, just 'got it.' They live the same life. They know it's not all rainbows and butterflies. And they wouldn't change it. But they can laugh about it.

So, I decided to write this post in the same vein about some of the lessons being an autism parent has taught me. Not the ones where I am a better person, or less judgemental, they are a given. These are the REAL everyday lessons. I hope you smile and nod your head when you read some of them.

Lessons being an Autism parent has taught me.

1. Sleep is for wimps.

2. Never buy anything for the house without first considering how much it would hurt were it to be thrown at my head.

3. Disney films are incredibly well made. So much so, that they don't get boring, even on the 6 trillionth watch in any given week.

4. I am perfectly capable of running at Olympic sprint speed should the need arise. It is amazing how fast you can run when you need to catch up with your child.

5. I do actually have eyes in the back of my head.

6. Poo is even messier than I realised. A little goes a long way...

7. Be careful what you say around your child if they are a 'scripter.' Grandma really doesn't appreciate being told by her 4 year old grandson that she is a pain in the ass.

8. Clean furniture is vastly overrated.

9. All those years when I was able to pee in private, I wish I had appreciated them more.

10. People who make seemingly 'crass' comments like 'Oh, but he might grow out of it' actually mean well and don't deserve the slap you are giving  them in your head. Sometimes, people with no connection to autism just don't know what to say.

11. Random strangers don't like to be sprayed with apple and blackcurrant  flavoured water when they are innocently meandering around Tesco doing their grocery shopping.

12. 'Old MacDonald had a farm' is an incredibly annoying song.

13. Mr Potato Head glasses cannot be bought on their own. They only come with the whole Mr Potato Head set.

14. Having to buy 4 Mr Potato Heads just to get 4 pairs of spare glasses is expensive.

15. Venetian blinds look better when they are all bent in the middle.

16. Fingerprints on the windows only really show up in the sunlight.

17. Always check the knobs on the oven/washing machine/dishwasher/tumble dryer before you switch them on. They aren't always at the setting you left them at.

18. Pizza does burn quickly when in the oven at 240. Even though you put it in at 170.

19. Just because someone asks for grapes, doesn't mean they want grapes.

20. Asking Caidan to do something 'quietly' will result in him running around screaming the word 'quietly' at the top of his voice.

21. I still have so many more lessons to learn. And I am looking forward to learning them.

Please feel free to add any of your own 'lessons' learned in the comments.

Thank you for reading!

In our autism home.

I know some of you will identify with many of these and many of you will identify with some of these, but here are just some of the things that make it 'our autism home.'

In our autism home, autism speaks. Well, actually, it either mumbles incoherently or it screams at the top of it's lungs. Either way, it takes several goes before we understand what is being said.

In our autism home, it is decorated with juice spills, milk spills and fingerprints. No amount of cleaning them away keeps them away. I have become accustomed to the pretty patterns they make on the walls.

In our autism home, we can tell how much he has grown by the height of the aforementioned fingerprints on the wall.

In our autism home, poo is a hot topic of conversation. Consistency, colour, frequency, we have poo conversations as often as others talk about what they did all day. Probably because poo is a big part of what Caidan did all day, or didn't do, depending on the poo situation at that time.

In our autism home, our kitchen cupboard is full of melatonin and Movicol (for the poo situation!) and some Imigran for mummy's stress induced migraines.

In our autism home, a 'day out' consists of no more than 2 hours. It is always a visit to somewhere very open, like the Botanic Gardens or a country park. Open spaces and nature are a winner. Anything else or any longer a time will pretty much guarantee a meltdown that evening.

In our autism home, sleep is not a right, it is a privilege. A good nights sleep consists of 5 hours unbroken.

In our autism home, we have a constant supply of pork pies, melon, strawberries and fruit smoothie drinks. Life would be hell if we ran out  of any of them!

In our autism home, we watch every video of Old Macdonald Had a Farm ever uploaded to You Tube. One after the other. Have you any idea how many videos of Old Mac have been uploaded to You Tube?

In our autism home, we get to watch lots of Disney films. Never all the way through though as we are told to change it after 10 minutes. We have so many films we are now desperate to watch all the way through, but it seems a bit silly to watch  Cars of an evening when Caidan might be asleep rather than say, Sherlock or Luther. You know, that thing called 'adult tv.'

In our autism home, we feel sorry for our neighbours who get woken up by screaming at 3am. The only thing I can say is, at least our neighbours can stick earplugs in and go back to sleep. Trust me, we aren't fans of the 3am wake ups either. Especially when daddy has to be up at 6am for an 11 hour shift at work.

In our autism home, people are always welcome. For ten minutes. Usually by that time Caidan is standing in front of them constantly telling them 'Bye bye, it's time to go.' Over and over until they get the hint. When they do decide to leave, they are often given a shove towards the front door. He is nothing if not helpful, my son.

In our autism home, we laugh. We laugh a lot. Without laughter, it would be so much harder to get through. We try and find humour in every situation. Even when it involves poo in the carpet or on the toys or all over Caidan. You have to find the humour. Somehow.

In our autism home, toys are not for playing with. Toys are lethal weapons to be thrown at the head of whoever has displeased Caidan at that time. You would be surprised how much a Mr Men book can hurt if it catches you in the right , or wrong place.
I feel in the last year our reflexes have really improved and we can get ourselves out of the way 7 times out of 10. The windows however, aren't so lucky.

In our autism home, it is normal for mummy and daddy to be hit and kicked. We are thankful that as yet, we have not been bitten. A 4 year old has a lot of strength when he is being stopped from doing something he wants to do, even if it IS dangerous and could involve a trip to the local Children's hospital accident and emergency dept.

In our autism home, we are used to being 'stroked.' By that I mean, I get my left temple stroked and daddy gets his nose stroked. It's a sensory thing, it seems to calm Caidan down. The fact that to us, it is akin to Chinese water torture is irrelevant. Caidan's sensory needs are more important.

In our autism home, we have love and patience and strength in abundance. Autism has made us better people and Caidan teaches us every day. Sometimes they are not lessons we want  to learn, but we take the good with the bad. Autism can be heartbreaking but it is also amazing. We celebrate things that to others may seem small and insignificant, but to us and to Caidan, they are the equivalent of climbing Everest! We have learned to appreciate the moments, for they are more important than the milestones where autism is concerned. Our autism home is a happy one, mostly. Yes, there are tears, Caidan's and ours, but for the most part, we are a happy, joyful home. We work hard at it, it could so easily go the other way, but that achieves nothing. We focus on Caidan's strengths whilst working on his weaknesses.

In our autism home, we are doing the best we can to do what's right for Caidan and for us all as a family. And I think we are doing a damn good job of it!

The Importance of Mr Potato Head's Glasses!

‘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 4, that’s who! Our little boy.

Caidan, the 4 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 it’s 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 and 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!!

                                                  Caidan with THOSE glasses!!


As far as Caidan is concerned now, 2 years after his diagnosis, things are hugely different! His speech is fantastic, he can eat the same food as any other 4 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 4 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!

When is a disability not a disability?

Recently, I seem to have read quite a few things from people who state categorically that autism is NOT a disability. It kind of got me thinking, where do I stand on this? I know that I don't look at Caidan and think 'disabled.' But then I don't look at him and think 'autistic' either, but he is.

Many people have invisible disabilities. Mental illness, arthritis, fybromyalgia etc. But people can't tell just by looking at them. It seems that in order to be considered disabled, you have to have a physical disability, an obvious one. In fact at times, it appears that only those who use a wheelchair are considered disabled.

Well, I call bullshit on that. Any condition that prevents someone doing everything a person without any illness can do, has a condition that is disabling.  They are not able to do things others take for granted. Take my son for instance. Other 4 year olds, with no disability or invisible disorder, can take their own jackets off, put them back on, can eat with a fork, they are (mostly) toilet trained, they can tell you when they are hungry, they can tell you when they are thirsty, or when they are feeling ill, or when they don't want to do something or when the do want to do something. They can tell you if they want juice or milk, or what particular cereal they want or whether they want pizza or chicken nuggets. My son can do NONE of those things. Autism makes him NOT ABLE to do them. Therefore, it stands to reason that he is disabled, surely?
Now, I get and understand that many people with autism don't consider themselves disabled and that's fine. Many who are higher functioning and many with Asperger's, they can grow up, get a job, get married, have kids and put their own jackets on, so I guess I can see why they wouldn't consider themselves as disabled. They may have social difficulties and maybe some communication difficulties, but they can generally live an independent life. So yes, I get that they would be a bit miffed at being called disabled. But for many, many more people with autism, or mental illness or other invisible conditions, life isn't like that. They may be non verbal, they may need support for the rest of their lives, they may have no hope of living an independent life or getting married or getting a job or of ever putting their own jacket on. How can they NOT be considered disabled?
More to the point, why do some people see the word 'disabled' as an insult? Some of the most intelligent, inspiring people I know are disabled. It  is in no way an insult nor should it ever be taken to mean that someone is worthless or fit for the scrapheap. That is so far from the truth it can't be put into words. Disabled people have a spirit that is amazing. All the obstacles they have to overcome to do things others do easily. That takes strength, courage and commitment. In no way is the word disabled an insult to anyone.

There is far too much judgement goes on in this world. Far too much finger pointing without thinking. Next time you see someone walk out their car into the supermarket, don't automatically assume they are not disabled. Most likely, they have a blue badge, which is not easy to get, believe me. Chances are they have an invisible disability. So think before you judge. In fact, why judge at all? Everyone has a story and it's not always visible to everyone. Think first, think 'invisible disability.'
Think that one day, it might be you that someone is judging wrongly. Think how that would make YOU feel.

Yes, I detest autism sometimes. So sue me!

Autism. It's an integral part of the people who have it. But it's not all of them. They are not only autism.

So why is it so frowned upon for us parents living with autism, to sometimes feel and, heaven forbid, say out loud, that sometimes, we hate autism??
I have read a couple of excellent blogs on this subject  recently so I thought I would get my tuppence worth in.

About 70% of the time, autism and I get along just fine. It's there and I am acutely aware of it, it's a bit noisier and messier than I'd like it to be and it doesn't understand as much as I would like it to, but that's fine, we can work on that. It belongs in our house, with our child and we make it welcome, we embrace it, we accept it as part of Caidan's and our lives. We work with it and we notice all the small and huge steps forward it takes and we celebrate every one!
However, that leaves 30%. Yes, about 30% of the time, I hate autism. I detest it with a passion. I wish it would leave our house and never come back. Those times when my son is in meltdown, kicking, hitting, screaming, hurting himself and unable to tell me why. I detest autism at those times. Those times when he wants to do something, like take his own jacket off and he can't, which gets him upset and frustrated. I detest autism at those times. Those times when he can't join in with other kids even though it is obvious he wants to, but he just doesn't know how to do it, and he gets frustrated and angry. I detest autism at those times. Those times when he is ill but he is unable to tell me what hurts or what is making him feel unwell, which gets him frustrated and angry and upset. I detest autism at those times. All of those times, I am unable to perform my primary function as a mother and help my child. Mainly because he either doesn't want me to or I don't know how to. That makes me detest autism too.

But let me make this clear. I detest AUTISM at those times. I do NOT detest my son. My son is so much more than just autism. It is not all he is. But it is autism that is making those times so hard for him.
No one would judge me if I said I hate my NT daughter's temper. They wouldn't think that meant I hate my daughter. But her temper is just a facet of her personality in the same way as autism is a facet of my son's.
So why shouldn't I detest autism sometimes?? Would you not detest something that makes your child frustrated and angry and upset, regularly?
Don't get me wrong, autism can be amazing and wonderful and downright awe inspiring, but it can also be painful, heartbreaking and isolating. I am blessed and truly thankful that it is 'only' autism Caidan has and that he does not have a life threatening illness, and for the most part, we are hugely positive about his autism, we embrace it, we want him to embrace it and to be proud of who he is, and we accept it. 100%. But that doesn't mean we have to love it all the time. Autism is not all rainbows and butterflies. Sometimes, autism sucks. It sucks big time. It can involve physical pain, both for Caidan and for us. It is horrible and heartbreaking to have to stand by and watch your child having a meltdown, not being able to help him or calm him, watching him kick, hit, scream and hitting his head. Most times, my husband and I still cry when it is over. It is the most helpless we have ever felt as parents. Plus, we have most likely been kicked and punched and we are hurting, both physically and emotionally.

So tell me, am I supposed to do anything else other than love my son and detest autism for what it does to him at those times? Because if I am, then I have failed as a mum.

Worry? Of course I do, I'm a mum!

Worrying. We all do it, all us mums. It's a major part of being a mum. Those of us with children with autism or other special needs, well, we live on a constant merry-go round of worry, don't we? We worry about the future and what it might hold for our children, we worry about if they are ok at nursery or school, we worry about whether they will ever stop hitting and lashing out, we worry about whether our planned trip to Tesco will result in a meltdown (and that's just from us, never mind the kiddos!! ) We just worry about them, constantly. NT children bring their own set of worries too, obviously. Entirely different ones for the most part, but worries all the same.

I have 2 children, Caidan is my almost 4 year old, handsome, amazing son who happens to have autism. Kirsty is my beautiful, intelligent and funny 17 year old daughter who is NT. Funny thing is, it's the latter who is causing me most  of my worry at the moment. Not for any bad reasons, she is an amazing girl and I am so proud of her. But there are good reasons for my worrying about her right now.

First off, yesterday, Kirsty passed her driving test. For those of you who have been there with your children, you will understand my worry!! Knowing she is out there driving and I can't protect her from the idiots on the road that should never have gotten a licence in the first place is really hard to take!! I am not worried about her driving, my husband assures me she is a very good and careful yet confident driver. But I can't control the others on the road, can I, so I have all these daft scenarios in my head involving police showing up at the door......I know these will fade in time but I can't help the worry at the moment!!
Then on Tuesday, she goes abroad to Magaluf for 2 weeks! All her school year are going (well, they have all officially left school now, which is what they are celebrating) and it will be a great experience for her. She has worked so hard this year, she deserves the break. But I am going to be a quivering wreck, drooling in the corner by the time she gets home!!
Then there is the worry of whether she will get the last exam pass she needs to get into her chosen University course. What if she doesn't? Is she going to be devastated? Will she just shrug her shoulders and find another course?? I don't know.
What I do know is that all these things are totally outwith my control, hence the worry!! It's a mum's instinct to protect her children and in circumstances where you just can't, well, I don't know about you, but it fills me with dread!! It's not about controlling her, I don't want or need to do that, but I have no control over protecting her. It makes me feel like I am failing her as a mum, which is really stupid, I know that, but it does!!

I doubt the worrying is going to stop anytime soon, if it ever will!! As I said to her, it doesn't matter how old she gets, she will ALWAYS be my baby girl and I will ALWAYS worry about her.
I am a mum, it's in my job description.

Yet despite all the worry involved, being a mum is the best thing I ever did, by a country mile. I am so proud of both my children. I am a very lucky lady. If not a huge, big worry wort!

Middle aged?? When does it happen?

I am contemplating a birthday in the next 4 months that will finally see me nearer 50 years of age than 40. It got me wondering (those who know me are now facepalming themselves!) but yes, it got me wondering, when exactly do you become 'middle aged?'

It seems to me there are 3 categories of age. Young, middle aged and elderly. So when do we cross from one into the next? Is there some sort of transition period where you dip your toe in the water so to speak? 5 years grace before you fully graduate from one to the next? Or do you just wake up one morning having shifted from one to the other? If we go by the old 'three score and ten' adage, then middle age must begin at 35 years old? But it doesn't does it? So when then?

What about a dress code? Is there one? When you are in the 'young' category, you can wear whatever you like, no one thinks you are too old to be dressed in mini skirts or leather trousers (does anyone wear leather trousers these days?)  But when we graduate into middle age, are we supposed to have some sort of uniform? Are leggings or jeans the acceptable way to dress? What about when we become elderly? Are we all to run/hobble out to buy crimplene trousers and sensible shoes and stock up on rainmates? Do we book in straight away for our blue rinse or can we wait a while?
All these questions running through my mind, but the main one being 'Am I actually now middle aged?'  Do young girls in their 20's look at me in my denim mini and leggings and boots and think 'Why is that middle aged codger wearing youngsters clothes?'  Do other people look at us 40 somethings and consider us middle aged?
I know when I was in my teens, I would have considered a 40 something as middle aged, but things have changed have they not? Apparently 40 is the new 30 and 50 is the new 40 etc. So has the cut off for middle age shifted as well? Are we looking at people in their 60's now and considering them middle aged instead of elderly? I look at my mum, who is 70, and I don't see an elderly woman. I see my mum, who has very few wrinkles and dresses in nice, modern yet tasteful clothes. So is 70 no longer elderly?

There is the train of thought of course that it is an individual thing. Some people look older than others of the same age, they dress older, they have older hairstyles. Perhaps it's how you look that determines when middle age begins?  I just have no answer to my question.
What I do know though, is that I don't consider myself middle aged. I don't consider myself young either. I suppose I consider myself as a 40 something mum of 2 who is comfortable being the age she is and who dresses how she wants to, has her hair how she likes it and wears make up because she feels better with it on.

So I say 'Middle age? Move along, nothing to see here.'

What do you think? How do you feel about what determines middle age? Or perhaps you think these stereotypes no longer exist? I'd love to know your thoughts, so let me know in the comments.

I look forward to reading!

What is 'normal' anyway?

We autism parents are all about raising autism awareness. We want the world to know about autism. We want to change the world for the better for those with autism.
But those of you whose lives are not touched by it are all still 'aware' of autism. You have all heard of it. Some may think, ‘Yeah, I watched Rainman, I know people with autism are genuises.’ Others may think ‘Yeah, that’s when they are in a world of their own, and you can’t get through to them.’ Well, technically, those assumptions aren't wrong. However and it’s a big ‘however,’ those are only a very tiny part of the spectrum of autism. 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. Some are non verbal, some are verbal. Some are geniuses with a special talent, some are not. Some give no eye contact, others give great eye contact. They all have their own personality (yes, people with autism have personalities!) They all have their own strengths and weaknesses. They all have their own unique challenges.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 people without autism, is that they have to fight to be accepted, as they are, by those same people 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 it seems 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, someone 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?? Surely normal is living and breathing and being yourself? Surely normal is allowing others to be themselves without mockery or bullying or tuts and sighs and stares? Surely 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 almost 4 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 personalites, 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 who they are. 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 and try and 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 others to be themselves.

I hope this post has made you think a bit more about autism and made you ask yourself  'Just how aware am I?' 

1 in every 100 people in the UK are diagnosed with autism and that figure is rising. Is it really too much to ask people to learn a wee bit about something which has a high chance of touching the lives of someone in their close circle of family and friends at some point? I don't think it is. I hope you don't either.

Be aware. Accept. Educate.

To blog or not to blog....

.....that is the question.

I enjoy reading blogs, especially well written ones. I like to read what others have to say about all sorts of things. Other peoples thoughts on life are interesting to me.

I have a lot to say about many things (not all of it educated, informed or even interesting and a lot of it involving a wide range of swear words!) but I have a lot to say. I guess that's why one of the words most commonly used to describe me is 'gobby.'
I'm not sure if it's meant as an insult but I don't take it as such. I have opinions and I am not shy of telling people what they are, as my long suffering husband will testify. I do like to think that I am willing to listen to others opinions too, especially those which have been researched and carefully considered. So when a few people suggested I start a blog, I thought 'yeah, why not, how hard can it be? I can say what I want to say, when I want to say it.' That's like a version of Heaven to me!!
Only problem is, when I actually sat down to start writing, my mind went blank. What can I write about? What makes me think anyone is going to be interested in what I have to say? Heck, what do I even HAVE to say? This blogging thing isn't easy, trust me!
 I am sure in time that a gobby cow like me will find rants and ramblings actually do come easy. Look at all the fodder I have. Autism, politicians, welfare reforms, wilful ignorance about disability, rude people, nice people, global warming, Boyzone ( only joking!!, Well, I might mention them once or twice!) teenagers, social media, the list is endless.

So if you are interested in reading the ramblings of a 40 something autism mum, I'm your blogger!
I hope you will join me, because if no one does, it's akin to me having a conversation with myself sitting on my sofa. Scarily, I do that often, although much of the time the conversation is actually with my 17 year old or my nearly 4 year old, but I might as well be conversing with myself for all the response I get! Unless of course the words 'pizza' or 'chocolate' are mentioned then suddenly they are all ears.

Back to the original question though, to blog or not to blog. In a conversation with myself on the sofa last night we unanimously decided to give it a go. So here I am, and I hope you are here too. If you are, then thank you for your company and if you aren't, well, I can say what I like about you because you won't see it anyway! Unless someone tells you. But the first rule of being a blog reader is 'What happens on the blog stays on the blog.'  At least I think that's what it was. Maybe it was 'Don't talk about anyone in case someone tells them and you get into hot water.'

I think I need to have a conversation with myself about it.






Until next time.....