Today, 2nd April, is World Autism Day. It is a day to raise awareness of a condition that affects a huge section of society.
It seems every other day charities are asking us to dig into our pockets for one cause or another, and if like us, in the times we live, money is not freely available to donate to everyone, but this is something dear to our hearts and therefore we support the National Autistic Society – http://www.autism.org.uk/ They are an amazing life line to people who are living with autism, be it themselves, their families, or people that people with autism come into their lives. When M was first diagnosed, we were left in mid-air. After months of support through the process of diagnosis, we were basically handed a piece of paper and told have the best lives you can. There was no help to understand what we were told, nobody to hold your hand as you get your head around the idea your child is different, and this is where the NAS became a life line. The information they offer is amazing and they can point you in the direction of help that might be available. Their website is a mind of information that can help with just a basic piece of information to details of the latest research. Without them, I don’t know that we would have coped as well as we did in those first few months while we were trying to work out what to do. Many areas have local branches where you can meet up with other parents for information share, or just some time with others who understand. Unfortunately the local club we went to closed as their just weren’t enough volunteers to help out, and the nearest one is 40 miles so not a resource for us, but for those who have access to it then it can be a great help, as there is nothing more helpful than talking to someone who has been in a similar position to you – I think that is far more helpful than all the qualified experts put together!
What does today mean to us?
Well like all the other families across the world that live with a person with autism, for us every day is autism awareness day, because we are living it. Today though means the condition is put more into the public forum. Like many people, before M was diagnosed I knew very little about autism. I just hadn’t come into contact with it, so just had the attitude it doesn’t affect my life so why bother? I think this is a mind set many of us have, and I am certainly not judging, because we have so much going on in our lives that we can’t possibly worry about everything. However when it does become part of your life, then you just cant understand why everyone doesn’t get the importance of understanding the way you do!
We have always been open with the boys about them being different. They need to grow up knowing why some people treat them as if they have a deadly diesese! We bought M a book when he was at the stage to talk to him about it. The book is called Morty the Meerkat has Autism – http://www.amazon.co.uk/Morty-Meerkat-Autism-Avis-2011/dp/B00E320O8O/ref=sr_1_2?ie=UTF8&qid=1396433906&sr=8-2&keywords=morty+the+meerkat+has+autism It is a fabulous book that just tells the story of a meerkat who is a little different, and how his peers learned to accept the things he did as just being part of who he is. M has taken this book into school on more than one occasion and teachers have shared it with the class. The first time his teacher came out afterwards and said after reading the book, he stood up and said he had a special brain. I cried, and the teacher said she did when he said it! It was amazing how he was able to do that. D has also read the book many times, and asked questions about special brains. When D was diagnosed, I asked him if he had understood what the doctor had said, and he said not really, so I told him, that he had a special brain as well, and he very casually said, “so I have autism too!” We then explained to him about aspergers being a special kind of autism. He was so accepting!
We have said to the school to be honest with children who comment on M’s oddities – D rarely shows signs at school, but it is hard for them to know what to say, and I do understand that, but it doesn’t help with helping others to understand when the situation is hurried away and not talked about. If the school just said M is flapping because its his way of shutting down to process information then those around him wouldn’t be so upset by it.
Today though, people affected by the condition are making a public voice to say we don’t want much, just some understanding and people to stop before they judge. Is that really too much to ask for? It seems it is most of the time!
I would not change my boys for the world. They are who they are. I would however change the world around them. D needs to know he is safe to let it all out when he needs to, and he certainly does when he is at home. M though needs more understanding. He needs people to stop thinking he is odd, and to just get to know him for who he is. This can only come from education, and I don’t mean sitting down in a classroom, but learning who the person is and what their needs are – just like we should be doing with all people!
The gimmick for this years Autism Awareness Day is to wear a onsie. I didnt think the boys would be up for this, but both wanted to wear them. I explained that not many at school would be doing so, and they might get questions asked. They still wanted to do it, but only if I wore mine, so I agreed. M wanted me to go into his class before school to explain to his teacher, and she was already onto the idea, and was fine with him being in it. I did say that if he was feeling stressed by it later in the day, to let him change into his gym joggers. D’s teacher was shocked she didn’t know about it, and said she would write it in her diary so next year she would be on top of it. She was however fine with him wearing his.
We will send our text to donate our £3 for the cause. “ONES14 £3” to 70070 if you at all interested.
What I ask of you is that next time you see a mother stressed dealing with a child in meltdown, don’t tut and stare, but ask if you can help, because maybe the parent needs someone to be understanding of what they are going through. Not all people want to talk about whats going on, so be respectful, but if I am asked about my childrens behaviour, I will happily say about autism, and what it means to them – I prefer this approach rather than people believing my children are badly behaviour because I am a bad parent!