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Friday, 27 March 2015

Judger no judging!




Today marks the start of Autism awareness week.
Personally, I am after acceptance, because let's face it, everyone is 'aware' of autism. It is now time, with at least 1 in 88 people in the UK having been diagnosed as autistic, for society to at least TRY to catch up. It's no good society telling everyone 'be yourself' for it to then say 'but just not like that.....'
Everyone is different. All of us. We are not the same as each other. Some are that little bit more different. What's wrong with that?
Do those people not also have the right to go about their lives without being mocked or bullied or laughed at or called weird or even worse, retards??
Tell me, who is the one with the problem really? The one who is born with a neurological disorder that makes them see the world differently, or the one who abuses said person because of this?? Who is the one that needs to change?
There is no 'one size fits all' in society. No little boxes that we all fit into. We all deserve the freedom to be ourselves as long as that is not harming anyone else. Sure, my child can be loud at times, he can have meltdowns when he is out in public, but really, does that deserve condemnation and ridicule? If that is the worst he does, then who is he really hurting other than himself and us, because we hurt watching him when he gets so anxious about a noise or a smell that he can't cope with, that all he can do is explode to get that anxiety to go away. Should I just keep him locked in a cage just so he doesn't bother anyone else for 5 minutes out of their lives??
Why does that meltdown deserve the disparaging looks, or the tuts of disgust or the shakes of the head that are given in our direction?
The ones with such a lack of compassion are the ones that deserve those looks and tuts and sighs, not my child.
Just because he has no outward sign of disability does not mean people should judge. Why are people so quick to judge anyway? It must be wonderful to be so damn perfect that you can judge someone else without even knowing any of the background. Really, what is it like to be so perfect?? I'd really love to know!!
Don't judge people. Be kind. Be nice. Be compassionate. Everyone is fighting their own battle. Just because it is not immediately apparent to you what that battle might be, doesn't mean you should pass judgement.
Above all, understand that everyone is different, and that some are more different than others, but that everyone still deserves the respect you expect to be shown yourself.
Autism is not a disease, it is not contagious, it is not bad nor is it something to be ashamed of. Autism has many, many challenges. Those who live with it every day have enough to deal with, be it trying to make sense of the world, or trying to communicate feelings or wants and needs (something most of us reading this take for granted) or trying to overcome anxieties to do something as simple as travel on a bus or go to a restaurant. Or whether it be someone like me, a parent who is trying her best to help her child do these things, sometimes unsuccessfully, a parent who's heart breaks when her child tries so hard to do something he should be doing at his age, but can't. A parent who doesn't intentionally want to annoy you when you are out shopping or eating out, and who tries to keep her child meltdown free by planning each outing with military precision, but then something she can't control happens and all hell breaks loose.
Do you think the stares and the tuts help? Don't you think me and my child have enough to cope with already in our lives without society judging us too?
Just stop. Just think. Just keep the tuts, stares and judgements to yourself.
They say more about society than they ever could about me and my child.

Monday, 5 May 2014

The journey



I'm not a great traveller, not really. However, this journey called autism, it's a bit different isn't it?
We have been almost 3 years on the journey now. Wow, nearly 3 years. My son is only 4, almost 5.
We are only a tiny bit into it, compared to how long we still have to go. Yet, I consider myself a pretty seasoned traveller now.
Oh, don't get me wrong, the road isn't always smooth, sometimes, there is a pothole that you twist your ankle in, or a sharp corner you didn't see coming. And those curveballs that keep getting thrown at your head from out of left field?? What is that all about?? But we deal with everything as it happens, and we move on, further down the road, with a little more experience.

It wasn't always that way. At the start of the journey, I didn't want to go. I was dragged, kicking and screaming. But my son was going and I was damn sure he wasn't going on his own. He needed me there with him, every step, to teach him, to keep him safe, to help him. Thing is, it turns out that half the time, it's him teaching and helping me. How cool is that?
At the beginning, I had no clue where we were going. We needed some help to get our bearings. People who maybe hadn't been on the journey personally, but knew a bit about it helped us, taught us the best ways to move forward and to help my boy navigate his way through. Then I met a whole load of people who lived in my computer, people who were on the same journey as us. People who were much more experienced travellers than us. People who wanted to help those just starting out, to pass on their tips and 'places to visit.'
That was one of the defining moments. Hearing from those people that the journey can get better.  Often because we got more used to travelling and doing what needed to be done to make the journey as smooth as we could. It still got really hard sometimes, I was told, but you are not alone, because there are so many others travelling with you. Some far ahead, some you will catch up to and some just starting out. Others hadn't started yet and didn't even know about it, but they would soon be on the road with us too.

Sometimes, the journey is fun. Sometimes we have to walk oh so slowly, sometimes we even have to retrace our steps. But sometimes, just sometimes, we get to walk quickly and even run! Those are great times.
We laugh a lot, we cry on occasion, and we get real tired and frustrated sometimes. But we never stop. Stopping is one thing that is not an option. We keep going, no matter how small the steps, we always keep going.

But you know the best thing about this journey? My travelling companion. He is so good looking. He is funny, smart, loving and has these huge blue eyes with eyelashes that go on forever! Whenever I get lost, he shows me the way I need to go. I love him, with every fibre of my being. I love him, I love travelling with him. Sure, sometimes I wish he would sleep more but what can you do??

Our autism journey. Full of surprises. Full of love. Full of hope.

Wednesday, 2 April 2014

Teach your children well. Please.



Happy World Autism Day!! 
Caidan is off to nursery as usual, not dressed in blue or multi colours or red, just dressed as he normally is. My reasoning behind that? Why mark him out as being any more different than he already is? It is patently obvious to anyone who cares to watch him with the other children that he is different. Whether the children notice that or not, I doubt it, they are so young yet. But there will come a day in the not too distant future when they will notice. Then, they will either accept it and see him as just Caidan, or they will mock and ridicule him. It could go either way. At the end of the day, it is down to those children's parents which way it goes. If they are taught to accept people who are a bit different and to treat them like they treat everyone else, then he will be just Caidan. If they are not taught this, and they pick up the vibe that is is ok to bully and laugh at others, then he will be mocked. So, I ask all parents, teach your children well. Don't allow your children to be the cause of someone else's unhappiness, don't let someone else's child be the object of ridicule from your child. Children pick up vibes from their parents. Be a good example to them. If you as a parent teach your children through your actions that it is ok to bully and mock, then your child will do the same thing. Don't be that parent, please. Think. Think how you would feel if it were YOUR child who was autistic, or different in any way, be it colour, race, religion or any type of additional needs, or because they may be heavier than other children, or because they wear glasses, or can't hear as well as their peers. Think how YOU would feel and how you would want other parents to take action. Well, it IS my child and I am pleading with you. Be accepting, teach your children well.
Don't make life harder than it already is for my child and others like him, adults included.
Be the change. Encourage others to be the change. You know it's the right thing.

Thank you. 

Tuesday, 1 April 2014

Awareness is not enough!


So, today marks the start of 'Autism Awareness Month.' Tomorrow is officially World Autism Awareness Day. 

Awareness. Awareness is a good thing, it's the first step in the ladder really. However, most people are 'aware' of autism, you all know it exists. Does it do any good just to be 'aware?' After all, I am 'aware' of rocket science, but what good does that really do? 


Awareness is good, but in reality, all Autism Awareness Day does is draw attention to the fact that autistic people are different. It focuses on them for everyone to see. But what does it TEACH people?? What does lighting a building up blue actually do for autistic people? 
Nothing, is the short answer.
What autistic people need is acceptance. Pure, unadulterated acceptance. Acceptance of the fact that sometimes their behaviours are different. Acceptance of the fact that autistic people are forthright with their words. Acceptance of the fact that their brains are, to put it simply, wired differently.
You cannot try and change this, autism has no cure. But 1 in around 68 people are autistic. That's a lot of people. Yet still autistic people, children and adults alike, are bullied, ridiculed, mocked and laughed at because they think differently. No amount of autism awareness is going to change that. These people who bully are usually aware that they are bullying an autistic person, it doesn't stop them.
However, a shift in the way that people think and view autistic people WOULD make a difference. A shift to ACCEPTING that autistic people are still people, people who live, love, laugh, cry, bleed, hurt and breathe just the same as all of us, but they just are a little different in their thinking and behaviour. Accepting that and allowing autistic people to be themselves, THAT is what is needed.
Awareness is good, but only if it leads to acceptance. Otherwise, it is just a waste of time.
Don't just be 'aware' of autism. Be accepting of it, of how it manifests itself, of how it makes autistic people think a bit differently. Most of all, remember, it makes autistic people DIFFERENT, NOT LESS. Never less.
Autistic people are not stupid. Just because some may be non verbal, it does not mean they are stupid. Far from it. Just because some autistic people flap their hands, it does not mean they are stupid. Far from it.
Autistic people have as much right as anyone to be who they are. But they cannot comfortably do that until the world accepts who they are AND what they have to offer.
It is the 21st Century. Things need to change and change now. You can all help with that change.
People are too quick to judge anyone who is not 'ordinary.' The fault lies with those who judge, not with those who are being judged.
Autistic people do not need to change, the world needs to change. It is not impossible, if the world wants to do it.

Autism Awareness is good, Autism Acceptance is a necessity. Total acceptance, not just token. Total acceptance. Nothing less will do.

Tuesday, 18 March 2014

Waiting.....

Waiting. Yes, waiting. If you are an autism parent, you know that feeling well. All we seem to do is wait. Mainly, we are waiting for someone else to make the big decisions in our children's lives. Not because we don't want to make those decisions, but because we are not allowed to.
First off, the wait for the actual diagnosis. That can be a looooooong wait for many. You know your child is autistic but you have to wait to have that confirmed. Often times, you have no access to any support until it is.
Then finally, the waiting is over and you get the diagnosis. Yippee!! All that support is gonna come flooding in now. So you wait. And wait. You wait for someone to decide whether they think your child actually needs support. Then they say 'okay!' Then, you wait until someone else decides what support your child will get, and how much. Waiting, all this waiting, waiting on someone else deciding these massive things for your child.

Then, and this is the biggy for me, as it is where I am at just now, you wait for someone else to decide where your child goes to school. Yes, you do!! Unless of course you are confident in the local mainstream school, where you are happy to send them. That's great, no waiting or decisions to be made by someone else there. Except, oh yeah, someone else decides if they need support, someone else decides how much support and what kind. I think I may be having dej√° vu here.......
But, back to the waiting on the school decision. We, as parents, know our children best, yeah? So, when we as parents know that the best place for our children is a certain school, be that a special school or autism specific school, it would be great to just apply for a place and get them started.
But no. This has to be decided by someone else, or a whole lot of someone elses. Many of whom have never met your child and never will. They decide whether your child is actually 'autistic enough' (yes, I know, absolutely ridiculous!!) to warrant a place at these schools. So you wait. And wait. Always waiting.

I don't know about you, but it often feels like I do all the hard work, being the parent, yet someone else gets to make all the big decisions about my child. That kinda sucks, doesn't it? I maybe wouldn't mind so much if I thought they were going to make the correct decisions, but let's not even go there, let's just not!

Then there is DLA. The dreaded DLA.
For those of you outside of the UK, this is a 'welfare' benefit that you can apply for if your child 'needs more care and support than another typical child of the same age.' The DWP description by the way, not mine. So, you fill out this form, this HUGE form, detailing every single thing that your child needs extra care/support/encouragement with. You spend a week having to think about your child's weaknesses and documenting it all. Then you send it off and, you guessed it, you WAIT. Wait for some unqualified person who knows nothing about autism to decide if your child actually does need this help and support or if you are just plain making it up and they are getting nothing, not a penny. So, you wait. You wait. And you wait some more because your paediatrician is a busy woman and doesn't have the time to drop everything and fill out a report for the DWP, even though you already sent reports from the Ed Psych, the Speech and Language therapist and the nursery confirming pretty much all you wrote. I guess if it doesn't come from the paed, it didn't happen!

So, here I am, waiting. Waiting on one of the biggest decisions of my child's life being made by people who don't know him. Will they give him a place at the school he needs to go to? Who knows. Here I am, waiting, waiting to see if the Department of Work and Pensions will renew my son's DLA or will they decide that actually, he doesn't need all that care and support and I should stop kidding myself that he is autistic and get on with it.
You know it all too well, don't you? Because you have been there too. Waiting. Waiting on someone else making the decisions. Because we have to let them.

If you need me, I'll be over in the corner. Just waiting.

Sunday, 9 February 2014

Autism Sunday - What I beg you to pray for.

Today is 'Autism Sunday.'
What is Autism Sunday?? Well, it is the day where people around the world are encouraged to pray for those with autism. It's a nice idea, I guess. However, I'd like to give you my view, and it is just that. I don't speak for anyone but my own family. Others may have differing opinions and that is their choice and I fully respect that.

But I want to say this:-

If anyone feels they want to pray for my son, then I would be delighted.
But please DO NOT pray for a cure for him, he is not diseased, he does not need a cure.
Please, DO NOT pray for him to be fixed. He is not broken, he is perfect to me and does not need fixing.
Please DO NOT pray and ask that sympathy is given to my son or my family. We do not need sympathy. We live our life here as it needs to be lived for the security and well being of our child. Just like any loving family does. Sure, it might seem like an odd or boring or chaotic or even exhausting life to many, and yes, it can be, but it's OUR life and it's what we are used to. We need no sympathy.
If you are going to pray for my son, I beg you, pray for ACCEPTANCE AND UNDERSTANDING about autism. Pray that my son can grow up in a world where he is accepted for who he is. Pray for a world where everyone accepts diversity. Pray for a world that will not laugh, ridicule and bully my son because he is not what is considered the norm. Pray that people will see the beauty and innocence of my son. Pray that people will see his strengths before his weaknesses. Pray that people will stop being so judgmental of my son and of my parenting skills. Trust me, since becoming an autism parent, my parenting skills have become well honed and are second to none|!

So again, I say, feel free to pray for my son, but pray that the WORLD will change, not my child.

Thank you.

Sunday, 5 January 2014

Dear Parents of the newly diagnosed



Getting a diagnosis of autism for your child can be a scary time for many. For others, it is a relief, a vindication even. There is no right or wrong way to deal with your own feelings, as a parent. You must do what you must do. But, having been an autism parent for 2 and a half years now, I would like to tell you something, which may or may not be of help to you, if you are struggling to come to terms with your child's autism diagnosis.

The first thing I have to tell you is, you won't always feel this way. I promise you that!! It's all new, it's all uncertain, you read a lot of doom and gloom about autism, you fear for your child's future.
But you know what? Before you even realise it, autism will become a way of life for your family. You WILL cope, you will do MORE than cope.  You will help your child fulfill their potential. How will you do it?? I don't know, because I don't know you or your child, but I do know you will do it, because that is what you do as a parent, it's what you do because you love your child more than anything else in the world. It's what you do because it's what your heart and your head drive you to do.
I am not here to tell you it's going to be a walk in the park. Far from it. It will be tough, heartbreaking, frustrating and some days you will feel like the fight has gone out of you. But then, all of a sudden, something your child does, or says, or a milestone reached will make your heart fly in a way you never thought possible!! It's not easy, but hell, it is so worth it!!
I want to share what I have learned so far and I really do hope you find it helpful.

An autism diagnosis does not change anything about your child. They are STILL your child, the same beautiful, funny, amazing child they have always been. They had autism the day before the diagnosis, and the day before that and the day before that!! Autism is not the end of the world, it is just a journey into a new world. A whole different world, full of wonder, frustration, joy, sadness, patience and love. It won't be easy but it will be worth it.
When your child learns a new skill, or says mama for the first time, or learns to put on his own jacket or tie her own shoes, or makes their first friend, the joy you will feel cannot be put into words.
This new world is about the moments, not the milestones. Cherish those moments, those victories, because whilst they may seem small to others, for your child, they are huge and they deserve to be celebrated.
When times seem bad, remember that you cannot have a rainbow without first having rain. Rest assured that the good times will outweigh the bad.
Your child will teach you to be the person you always wanted to be, with more love, strength and patience than you could ever have imagined.

So, buckle up and roll with the punches. Autism is a life like no other. Embrace it. Love your child for who they are, not for who you thought they would be. Don't try to change them to please the rest of the world. Your child is exactly how they are meant to be. By all means do what you feel is necessary to benefit your child, but do it for THEM, not so that others can feel comfortable.
You need to learn to accept that autism is a part of your child and you have to enable your child with the knowledge that you accept them as they are, because you have to allow your child to be comfortable with who they are, and to know that they are loved just as they are. They need to know it is fine to love themselves and to embrace who they are. They need to know that those who don't accept them are the ones that are wrong, not them.
Be prepared to develop a thick skin, as your child will be judged, your parenting skills will be judged. But know this. Those who judge are the ones with the problem. They know nothing of your life or of your child's amazing ability to be able to function in a world that is completely alien to them. Those judgemental, intolerant people are the ones who need to change, not you and certainly not your child.

Finally, the single most important piece of advice I want to give you is this :-

No one knows your child better than you do. There may be many professionals involved with your child and you. This is not a bad thing at all, but you must remember that they do not know everything. Your child's autism is unique to your child. Never allow your child or yourself to be pushed into doing something your instincts tell you is not what you should be doing. You are your child's advocate, you are your child's voice. You know your child better than anyone. There is no 'one size fits all' approach. Do only what you think will be good for your child. Use your voice, never be afraid to be heard.

Welcome to the rollercoaster ride that is autism. Together, you and your child will find your own way of navigating the journey. You have got this. You and your child are strong. You and your child are fighters. You and your child are determined.

Your child is autistic.

You are an autism parent.

Welcome to the club! We've got your back.