Finding a cure...

20/5/15

I got a little bored today and did some research about ASD and I came across the sciency people trying to find a cure for autism. Now, baring in mind that no one is sure what causes autism, how can they find a cure? And quite frankly why focus on finding a cure for it when diseases like cancer are still very much at large?
I don't know if it's just me (seeing as I don't know or speak to anyone else who's children are autisc), but I don't think my boy needs a cure. He doesn't have an illness, he isn't going to die from Autism. It's just part of who he is. We don't know if he was born with it or if he developed it, or if he got it from when he had the meningitis. We don't know, and we probably never will, but it doesn't matter. We love and cherish him just the way he is. Don't get me wrong there are days when I want to give him away because he's too loud or won't stop running around or won't walk down the street without screaming and people thinking he's being kidnapped! But that's part of the joys of having children.
I, as an autism parent, don't believe that a cure is really necessary. I understand that some people will disagree and after all everyone is entitled to their opinion. I appreciate that there are varying degrees of autism and some are "worse" than others. I don't mean worse in a nasty way but I can't think of the right word to use... anyway, I understand that some have it better than others. We're quite lucky that Luke is in the moderate to severe category. But my boy is still the light of my life. The only thing I would change about him if I could would be to add a volume button somewhere!

This may sound a little crazy, but I sort of think that Autism may be the next step in our evolution. Almost every great person to have lived has been somehwere on the autism spectrum, whether is be autusm or Aspergers - Mozart, Amanda Baggs (advocate of rights for autistic people), Marty Balin (singer and songwriter), Jessica-Jane Applegate (Paralympic swimmer),Todd Hodgetts (Paralympic shot putter), James Hobley, British dancer and 2011 (Britain's Got Talent finalist), Bhumi Jensen (grandson of Bhumibol Adulyadej, King of Thailand), Christopher Knowles (American poet), 50 Tyson (rapper and autism activist), Stephen Wiltshire (British architectural artist), Temple Grandin (food animal handling systems designer and author), Courtney Love (frontwoman of Hole), Dylan Scott Pierce (wildlife illustrator). Plus Mozart, Newton and Einstein. So without them having autism, our world would be boring. We wouldn't understand maths, or have musical masterpieces. We wouldn't be able to see beautiful works of art or have music we can relate to. So yeah, I think autism may be the next step in our evolution, why would anyone want to stop that? Look how far we've come as a species, why would people want to stop all that progress? Mother nature may not have it all worked out just yet, and she needs to iron the kinks out a little bit.
All I know is that more and more people are being diagnosed with autism. Some say that's because it's easier than facing that you're child is naughty. Some say it's because doctors are too lazy to work what the issue really is and so they loosely group them all together. I'm not a medical professional, or a scientist so I really don't know. But to think that my baby is part of evolution kinda makes the bad days worth it, you know?

So, the very long answer to the original question... no, I don't think that Autism needs a cure.

Funny People

11/5/14

So, it still astounds me how people can be so ignorant of the world and the things in it.
Luke and I went to the shop earlier on today and he had a bit of meltdown. Not a massive one but big enough to cause a scene. One particular lady wouldn't stop staring at him and I calmly said, "don't worry, he's autistic. He'll stop when he's ready." And this is the bit that really got me. This very ignorant lady said "Autism is an American thing, so he can't possibly have it. You should be ashamed of yourself for wishing a disability on your child!" After I'd finished laughing (because of the sheer stupidity of that statement) I quite calmly said, "oh, I hadn't realised that. Next time I'll try and pick something a bit more British." And walked out, without getting what we needed.
I was truly shocked that apparently autism is just for the Americans. Does that make us honorary Americans? I know he can't have caught it from an American because we haven't been to America and we haven't met anybody from America. So in that case, how did an American disease/disability get its claws into my son?! How dare it attack my baby? Call the police, the FBI, interpol, the military! Raise the alarm, there is some kind of autism flu or something.
Oh wait, I just realised... Autism isn't racist, or country-ist (I know that's not a word but you know what I mean). It doesn't care where you live, or how rich or poor your family is. It doesn't care if you're from Britain, America or Africa. It doesn't care if you are black, white or green. AUTISM DOESN'T CARE!

It amazes me that even with the rise in autism spectrum diagnosis people still don't know all that much about it. People seem to only know about autism if they know somebody with it, or somebody's child has it. On the one hand, I'm truly grateful that only one other person I know has an autistic child (not counting Luke's nursery friends) but also saddened that just because it's not affecting them personally, doesn't mean the ignorance is ok. 
There are varying types and severities of Autism, like with most things. Compared to some Luke has a pretty bum deal, compared to others he's been pretty lucky. Many have ASD as well as some other problem, so we have been relatively  lucky. Still, I wouldn't wish Autism on anybody - even my worst enemy. It is a cruel and horrible disability. It separates you from other people.
Most people don't understand how I can get so excited about the little things that Luke does. Most people will see something I've put on Facebook and think 'he's 4, he should have been doing that a long time ago', but Luke has never been like other children - but that was bound to happen with me as his mother!!
Actually, I wish Autism on everybody. Not in a nasty way. Not permanently. Just for a day, or a week, so that people can see how difficult yet rewarding it truly is.
Luke and I have a bond that I think is pretty unique. And I think that his Autism is the reason behind it. Luke knows (as he has seen it first hand) that I will always champion his cause. I will always stick up for him and love him unconditionally as all parents do. But this goes beyond that. All parents will say the same things that I just have, but their children aren't under constant scrutiny for the way they behave or the way they talk or the way that they have a meltdown because there's a strange smell or too much noise, or too many people. I am always aware of the people around us, I've gotten pretty good at judging a situation and working out whether all of my attention needs to go on Luke or whether I need to get my guard up because someone will start. I always give my all to Luke, and I think he knows this.
I was asked the other day if I regretted having a child at 18, and honestly the answer is no. I'm not missing out on anything. The 'normal' people my age are going out drinking, and learning to drive and have just finished university... but Luke has given me an education like no other. He has taught me the meaning of true, unconditional love and loyalty. Then, I was asked if I regretted having a disabled child. As it was a friend, I didn't automatically go on destroyer mode - any one who knows me, knows that I turn into a big angry mama bear defending her cubs when people say things like that. Again, the answer is no. I don't regret Luke being 'disabled'. I don't really see him as disabled, a pain in the arse yes, but not disabled as such. Compared to other children he may be 'the special one', or 'that naughty child'. To me he isn't disabled, he is differently abled. He can do things that other children his age can't. Does that make them disabled? No, it just means that they have different strengths and weaknesses.

Even the 'normal' children have different strengths and weaknesses from the other 'normal' children, it's just the way of the world. Let's face it, the world would be pretty boring if we were all good at the same things.

Getting better (hopefully)

27/04/14

Things seem to be improving with Luke since we moved. His behaviour has improved because he's not having to fight for attention, it's easier to stick to routine because there's no one else to worry about. It's taken him a week or so to settle in and get used to it just being the two of us, but so far it's looking good. I feel silly for worrying about it all now!
It gets quite lonely though, when Luke's in bed. I try to phone or text people, but they're either asleep, don't have time to talk or too busy with other people. Again, I guess that's something I'll get used to.
Don't get me wrong, it's not all brilliant but it's not all doom and gloom either. I have bad days and good days emotionally, but as long as there are more good days I can't really complain too much. I need to get used to relying on myself and not others. I need to find my own ways to deal with stress and upset because now I have no one to complain to.
It's quite a strange thing, going from a proper family to having just two people. I used to be able to turn around say something that just popped into my head, and now I can't. I miss that. I miss the constant company.
I find myself rattling round the house trying to find things to do just to keep me busy, where as before I never did. I was quite content just to sit and watch a film because I wasn't on my own. It's strange and it'll take some getting used to, but I guess we'll get there eventually.
It's also hard seeing people's true opinions of you. When we lived with Luke's dad, there was me and Luke, Daz (his dad) and Lauren (Luke's half sister). And the dog! And Daz's sister and neice next door. There was always somebody coming or going, we used to stand and talk over the wall to each other like old people, putting the world to rights. It's hard going from having people, to having no people.
I've moved to a new area. It's not really new, I used to hang out here as a teenager all the time. But I don't know those people anymore. The people I went to school with, even though we went through the whole "let's stay in touch" BS,  all drifted away. Some of them I haven't spoken since the last day of school and that was 6 years ago. Some of them I didn't like, and some of them didn't like me. So I can't exactly go knocking on their door for a friend.
It'll probably get easier when Luke starts school as there will be parents to talk to in the playground and what have you.
I'm trying my hardest to stay optimistic.

It would be easier if people kept their promises though, and showed that they truly care.

So, my point is that Luke is doing well! Yay! He's back at nursery tomorrow (thank God!) And hopefully the routine will be easier then.

From Bad To Worse...

20/04/14

Happy Easter!

We're in the new house, and it's ok. It'll take some getting used to though. Luke seems to like it which is a bonus, and he's doing well so far.
However, everything seems to be going wrong! I had a man come out to look at the boiler and it worked for a couple of days and it died last night. A man came to look at it today and the fan is broken! So I have no hot water and no heating! Which doesn't help when Luke doesn't like to wear clothes in the house. I've spent 2 hours following him around trying to get him to keep his clothes on.
I know it sounds like I'm being a bit dramatic and you're sat there thinking 'it's only a boiler', but it's just another thing to add to list of crap. 
I always try to stick to autism and not vent too much about everything else, but sometimes that's hard.
I've been thinking today, and I've come to the conclusion that if there is a god, or karma, or some other mystical and magical force at play in the world, then he/she/it hates me. I must have been really bad in a previous life!
I'm tired of having no choices, or having them taken from me. I'm tired of being dealt the bad hand.

Anyway, I've met some of the neighbours. The man next door lent me his lawn mower when my friend that came to do it broke his. Which was a really kind thing to do. There is a lady in the corner who knows one of my friends. So it may not be that bad here. They've all seen Luke kick off and none of them seem to be all that bothered by him (more the behaviour than Luke himself) which is good. At least I don't have to be on my guard at all times which will be a welcome break.
People say that you get the life you were meant to live. God doesn't give you any more than he thinks you can handle. Well, either god is a total moron and needs to check his crystal ball, or I'm secretly a stronger person than I thought. I'm leaning towards option one!
I try to be an optimist, I try to have faith (not in religion or anything, but in life, in other people, in 'everything happens for a reason'), but it's getting really hard to keep doing that.
People are cruel, heartless and callous.  Life is what it is, there is no purpose, no meaning. You're born, you live, you die.
I find it hard to believe that everything happens for a reason, because some stuff is messed up. I can't think of a reason behind the horrors in this world. I don't just mean my crappy crap, people have it a lot harder and in other ways. I'm having trouble with my optimisation.
It'll come back eventually I guess.

So, my point today, rather than being about autism itself, is that you will never know the answers. The big questions in life will probably never be answered, I guess that's why they are the big questions. People should try to be optimistic,  even when there isn't really anything to be optimistic about. People should try to be kind and think of others. Smile at a stranger in the street, it could make someone's day. All we can do in life is try our best. So try. I understand that it's a bit of a contradictory thing to say after all my moaning, but maybe one day I'll follow my own advice.
Stay safe guys :)

Changes

12/4/14

Changes in life are inevitable, some are brilliant changes - some not so much. Whether it be a relationship break down, a death of a loved one, an unforseen event. Sometimes it can be a new job, an unexpected thing that turns out to be amazing. I've had a few changes throughout my life, both good and bad.
For the majority of people changes are fine, you do what you can with the hand you've been dealt and move on. With children and adults with autism and many other disabilities, changes are horrendous. They complicate everything.
Routine is a big thing for us. Not so much in a regimented time schedule, but we have to do the same things in the same order. I guess I'm lucky that Luke hasn't yet developed a sense of time. At the minute we just have to follow the same pattern. So, we'll get up, go to the toilet, wash hands, brush teeth, have breakfast, go to nursery, come home, have lunch, watch some TV, do some drawing, play outside, have a dance party (great fun and good for exercise, also gets the good old endorphins flowing!), have dinner, have a bath, go to bed. And repeat the following day. My life is a little like the song "eat, sleep, rave, repeat", but without the going out clubbing.
We are going to be having lots of changes in the near future. Luke and I are moving out on our own! We have a lovely little 2 bedroom house, in a nice area. It's over the road from a beautiful park, a Mcdonalds and around the corner from a retail park.
I'm not really sure how Luke will cope with all of these changes as it will be totally different. Rather than it being 4 of us, there will only be 2. We'll be in a strange house, in a strange neighbourhood, trying to unpack and settle in. It will be hard. And Luke will probably have more meltdowns than usual because it's all new and breaks his routine. But eventually we'll get there.

I found something on the Internet yesterday, that whilst has nothing to do with what I'm talking about now is still relevant. Kind of. In my head it works!

People are stupid.

8/4/14

Ok, so people are stupid, rude and clearly weren't brought up with respect for other people's feelings and thoughts.
So there's this one person in particular who is seriously getting on my nerves just recently. I'll leave personal issues out of this but let's just say she's not nice. Anyway, so she comes to my house, interacts with family and says 'is Luke always like this?' 'I feel really sorry for you' 'I couldn't cope with him all the time'. So, it's quite simple - if you don't like, or can't handle my child, don't come round. If you want to criticise my child, just don't. I know we everyone is entitled to their opinion, but seriously?
My first priority is my son. He's not "less" than other children, he's just different. Unique. In some ways he is more, because he is so querky.
I just think it's bizarre. I wouldn't dream of going into someone's house and disrespecting their child, nor would I voice my opinion in front of the child! Just because Luke doesn't communicate well with people, it doesn't mean he's thick, or a 'retard', 'spaz', 'window licker' or 'the lights are on but nobody is home'.  (Yes, those are things people have said)
Luke understands to a certain extent what is being said, but he is really good at picking up on tension. He knows when something is wrong, he knows when you are happy or sad or angry even if you don't tell him or show it in your face.

It amazes me that in today's day and age people can be so heartless and void of compassion.
As a curious child, if I saw someone who was 'different', I was obviously interested. I'd stare and ask my mum and dad questions as most children do. It's not the children that bother me, it's the adults who quite frankly should know better.

I've overheard some of the children at luke's nursery saying "that's luke mum, he's naughty". And the parents don't know how to explain why luke is the way he is, but from a child's point of view luke is just naughty. He's not disabled to them, he's just another child. Perhaps we should all look at the world the way children do. Everything was so much simpler when I was a child. Children aren't racist, anti gay, cruel and vindictive. They are accepting of everything until someone changes them. We aren't born racist. We aren't born selfish. People make people the way they turn out, people make people believe what they believe. Society teaches us our parents are always right - but we aren't. I've probably made a million mistakes with luke. Not intentionally but sometimes you think you're doing the right thing when you aren't. I'm not suggesting you tell your kids when your are wrong because that would just open a huge can of worms, but how many people can say that they honestly, 100%, look back and say they did everything perfectly? No one can be right all the time.

I believe that things aren't always black and white,  right or wrong. There is a grey area with some things, the is a space between right and wrong. You can't view the world that way. People do wrong things, but believe they do them for the right reasons. Parenting is a grey area. I assume it is the same for the 'normal' children. For example we teach children that fighting is wrong. I teach mine that fighting is only on if someone hits you first. Those were the rules I had when I was growing up. If someone hits you, you hit them back. That's the way I teach Luke. It's not ok to go around hitting people, but there exceptions.

As far as I am aware, the majority of people want better for their children. They want them to live a comfortable life, have a good work ethic, be the first in the family to go to university. Why does that stop with opinions and views? Surely if you want your children to have a better life, you wouldn't force your uneducated and bigoted views on them... This is why the world is the way it is. Be it through religion, parenting, schooling or brainwashing. People seem to be less and less tolerant of things. And it's not fair. It's not a world I want my child to grow up in. To be mocked and ridiculed when we leave the house because he is different, because he struggles in social situations, with crowds, with loud noises. I know it sounds cheesy and childish but I truly don't understand why we as a species can't be more understanding and loving towards others.

April

1/4/14

April is autism awareness month. Which is great, let's get the word out and all that. But before I had autism in my life I didn't know much about it, and sadly that is the case with most people. It's the same for most illnesses and diseases.
The invisible illnesses seem to be the ones no one knows about - because they aren't in your face. Everybody knows about down syndrome, because it is obvious when someone has it. People are aware of it, what it means, the usual things that come with it like heart conditions. But with autism no one really knows what it is like until you have to deal with all the time.
Society tells people what is 'normal'. Most people want to be normal and have a normal life. You are 'normal' is you are a certain size, if you behave a certain way, if you live a 'normal' life with 2.5 kids and a dog. But society is wrong. People are 'normal' the way they are. Luke's autism is normal to me because he's always been this way. I've been given the option to medicate him when he is 6, but then he won't be 'normal', or at least his own kind of normal.

I'm getting off track... April is autism awareness month. But people aren't aware of what autism is, how it presents, how it affects people. People's lives, people's relationships.
People see Luke having a meltdown and they either look at you with annoyance or pity. It shouldn't be like that. People should know and understand the signs of autism and recognise that the child in front them, making a scene, isn't a spoilt brat or a badly behaved child, but a child with autism who is overwhelmed either by a social situation or by a sensory overload.
An adult who is 'odd', may be an adult with autism. They may have trouble assessing people's emotions, have trouble in crowded places.
We've all seen the 'crazy bag lady', or the guy that's weird, or the teenager who is constantly by themselves.
I implore everyone who reads this, just for one month, to think things through before you judge a person. Autism doesn't just go away when these children reach a certain age, it is with them throughout their entire life. They're families are constantly affected by autism and the way that people see it, and the person who has it. People aren't always what they seem to be.
Remember what we were all taught as children - "never judge a book by its cover", and my personal favourite "if you have nothing nice to say, don't say anything".