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!