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".

New Beggining.

28/03/14


Hey guys :)


Sorry, I know it's been a while. I've been dealing with some stuff, but it's all good now.


I want to talk about new beginnings today.
I've been on facebook today and seen that lots and lots of people are having babies! Congratulations to you all!


When I found out I was pregnant with Luke I was scared. And I mean really scared. I was 17 years old and my partners was 14 and a half years my senior (Pausing for shocked and disgusted gasps). I had a life plan, not really a plan - more of a general idea of what and who I wanted to be. I wanted to be an English teacher, get married and have babies. That will probably never happen now, but I'm still happy with my life the way it is.
When I told people that I was pregnant, I got mixed reactions. One of my very best and closest friends told me I was a stupid cow, literally those were her words!
A very lovely lady with 3 very beautiful daughters discussed options with me. Personally, I don't think I could of had an abortion, although at 17 I really wasn't sure that I wanted a baby (I don't need a safe sex lecture, I was actually on the pill when I fell pregnant), but abortion wasn't something that I felt comfortable with. I'm not judging anyone that does have one though.
Life has been a drama with Luke since before he was born. Since my 3rd or 4th scan I was told that Luke was a girl and was told the same all the way through my pregnancy. And out he comes after 42 weeks of pregnancy, 2 days in hospital being induced, 18 hours of labour, gas and air and an epidural, a man with big hands and sharp scissors and 15 stitches. And he's not a she! We'd chosen the name Lily, and then we had to sit and think of boys names. So it's always been drama after drama with Luke.
At 2 weeks old he urinated in his own during a nappy change and got conjunctivitis. At 5 months old he contracted meningococcal septicaemia and nearly died, spending a week in isolation at the hospital. We were told that he could have permanent brain damage. But thankfully he seemed to come through really well. He was different though, I cant really explain it without it sounding stupid. Those of you with children will understand. Even Luke was only nearly 6 months old, he had his own personality. He reacted to each of us in different ways. After the meningitis he didn't know who any of us were, and it broke my heart. It was almost as if my baby had died and we'd brought home a different one. Luke still looked like Luke, but wasn't... It was hard, but we got through it and Luke learnt everything all over again and he did really well. He's always been a clever boy.
When Luke was about 18 months old we realised that he didn't quite match other children his age. The neighbours have a daughter who is only a few weeks older than Luke and she was talking reasonably well, and Luke was still babbling. She could play well with other children and Luke couldn't. I made excuses - girls are faster than boys intellectually, she has 3 older siblings so of course she has to play well with them. But now, looking back I can see that it was all signs of autism.
I never took Luke to soft play or the mother and baby groups because I always worked, I was a passenger assistant, taking disabled children to school, and then with adults to day centres. I worked at McDonald's for a while. I was a carer for the elderly and disabled. So I never had time to do these things with Luke - and I never thought it mattered, I loved him and I made as much time as possible for him whilst also providing for him. Now though, I think that if I had taken him to those things then we would have seen this earlier. Don't take me wrong, I love Luke exactly the way his and there is no 'cure' for autism. But early intervention is key, and the majority of people who have had adequate early intervention go on to lead a relatively normal life.
We missed Luke's 2 and a half year review due to a bereavement in the family and we were never sent another appointment. I should have been on top of it all, but due to distractions at the time it completely slipped my mind.
It wasn't until Luke started nursery that it was blatantly obvious that he wasn't like the other children of his own age, and this time I couldn't make excuses for it.


My point is that a lot of things happen and we never see our lives going in that direction. I had planned to have a baby girl, and then my baby was a boy. I wasn't particularly bothered about the sex of the baby, I just wanted it be happy and healthy. I never planned for my child to have autism or any disability - not that anybody really plans for a disability, but you know what I mean. I had a general plan for him, as all parents do. We imagine the kind of life that we would like our children to have. To be healthy both physically and mental throughout their lives except for silly colds. We plan where they will go to school, and college and university. We think about their wedding and their children and pray that we like their choice of partner!
I have been told by a few professionals that Luke will never lead a normal life. He will never cope in most social situations, he will never cope in a mainstream schooling environment, he will never become a doctor or a lawyer. He will probably need a high level of care throughout his entire life. And yet my dreams for him haven't changed. My son is clever, and I don't mean it how people who have really thick children say "but they're good at such and such". I mean he truly is clever. OK, so his speech isn't great, but he learnt makaton signs with amazing ease and we can effectively communicate 9 times out of 10. He's not great at socialising with others, but if you show him how to do something that no 4 year old should be able to do, he can. So I still believe that Luke has an incredibly bright future ahead of him and I will gently push and encourage him throughout his whole life.
I saw a quote a while ago, I can't remember if I told you it in a previous blog. I'll say it again anyway.
Albert Einstein, one of the greatest ever mathematicians the world has and probably will ever see, had autism. And he once said, "Everyone is a genius, but if you judge a fish by it's ability to climb a tree then it will spend it's entire life believing it is stupid."
Einstein was right. Some people are academically intelligent, they go on to be lawyers, doctors, scientists. Others are better at the 'artsy fartsy' stuff. They go on to become painters, writers, actors. And others are happy to be reasonably good at everything and become the 'normal' people. But if you judge one person against another, of course one will fall short in some way and spend his or her life believing that they are not as good as other people.


So, back to my title of "New beginnings", I have had some things fall into place that I'm quite excited about. And I have been challenged to do the '100 days of happiness' - where even on really bad days you have to find something to be happy about. Even something stupid, like you had a lovely cup of tea or the local shop had the chocolate you like... I was challenged because I can tell people I'm happy and that I'm OK even when I'm not. When I'm having a pretty bad day and I can still smile and go on like everything is fine. So today is day number 1.
Today, I am happy that I have 4 particularly wonderful friends, who I love dearly. I wish you all the love and happiness in the world.
So my new beginning starts with finding things to be happy with, even when life sucks.


I think everyone should do the 100 days of happiness challenge because there are far too many miserable people in the world.

School Holidays

20/2/14


So, it's been a while. I didn't forget, I've just been running out of time. I usually try to blog whilst Luke is in bed, but just recently he's either been going to bed late because he's been having quite a few bad nights, or I've been that tired that I've been following him to the land of nod shortly after him.


This week is half term, and Luke has been particularly difficult, because he's not in his usual routine. He loves nursery, and having time off for any reason really messes him up. He's hard to entertain at the best of times due to his short attention span, but when he's at home all day he really hates it. There's only so much you can do to entertain him. The weather has been pretty awful too, mainly rainy and windy, so unfortunately I haven't been able to take him to the park.


School holidays are usually quite difficult for Luke, and subsequently for me also. The summer holidays aren't too bad, after a week or two he sort forgets that he's supposed to be at nursery and calms down pretty quickly, gets into a new routine. The half terms and the two weeks at Christmas and Easter are a problem for Luke though, just as he's settling into a new routine it's time to go back to nursery. Holidays are difficult for every family, trying to juggle child care and activities and such like, but with an autistic child is so much more than that.


I don't recall if I've mentioned routines before, but they are a huge part of our lives. Not so much with set times, but in terms of first we're doing this and then that, and then... so on, so forth. Everything has to be structured to a certain extent. People coming and going also disrupts him, people pop up into our lives for a few weeks and then disappear, it's not fair to either of us.


People think I'm rude when I say things like that, but at the end of the day Luke is my main priority, and if you can't make time for us on a regular basis, then I'm sorry but I don't have room for you in our lives. Not only is a nightmare whilst people are there, he is the same for hours after you've gone. It doesn't stop as soon as you walk out of the door.




My boy is a genius. I know a lot of you will have preconceived ideas of what Autism is. Some will have heard of Asperger's Autism and some will only see the worst end of the scale. I'm truly lucky to be roughly in the middle.
Asperger's Autism includes the likes of Einstein, Temple Grandin (a very interesting woman who changed the way most of the world treat cattle), Mozart and even Bill Gates. It is said that every person who ever did anything that changed the world has Asperger's Autism. Aspie's are super clever. I don't mean necessarily they're are academically exceptional but in one particular field they will know everything there is to know. At the other end of the scale there are people (both children and adults) who can barely function properly. They usually have another illness or disability along side it, but it's still really sad.
But, back to Luke. I'm not saying this just because he's my baby, he really is super clever. He can hoover, he can work the washing machine and tumble dryer, he can load the dishwasher, he can feed the dog... All the things that 4 year olds can't necessarily do, Luke seems to be able to do. The usual things like dressing himself, eating a full meal without having to be prompted to take every mouthful, he's not so good at. Generally, he only has to be shown something once and he can do it. He hovered my front room for me today - it'll need doing again because it wasn't done properly, but at least he tried.


We're ok ish at the minute. We're having more difficulties with him being off nursery, but we're also having a lot more fun and achievements at home too.


Be grateful for what each of you have, don't dwell on what you don't :)