School.

16/12/14

Ok,  so this is going to be a bit ranty.  I apologise in advance.

School are being very unhelpful, uncooperative and quite frankly a wee bit rude.
They wanted like to be assessed/diagnosed with ADHD to better understand his behaviour before they would even consider taking him for full days. I did that. I took him to the paediatrician, got him diagnosed and agreed to medicate him during school hours so that he could meet his full potential. And they still won't take him for full time hours!! What more do they want me to do?! He has his statement and is supposed to get a minimum of 20 hours per week with additional support. They are actually breaking the law! A statement of special educational needs is a legally binding document.
I have asked on numerous occasions to revisit the conversation about Luke attending school for full time hours and they keep ignoring it. So I've had to take things even further - I have involved the Parent Partnership. For those who want to know more about the Parent Partnership you do, here. They are fantastic and deal with all kinds of things. It's really worth looking at if you have a special needs child.
So, the case worker is setting up a meeting with myself, her, the senco (special educational needs coordinator) and possibly the head. Hopefully we'll get to the end of it and Luke will be in full time hours shortly after Christmas. Fingers crossed!

I hope you have a very merry Christmas and a happy new year!

Good News & Bad News

3/12/14

So we have been given both good news and bad news. I suppose really the good/bad thing is how you view it. It's about perspective. Anyway, we have a new paediatrician and I kind of love her. We've only seen her once so far, although we have another appointment next week.
Luke was diagnosed with Autism Spectrum Disorder (ASD) in August 2013 and we received an additional diagnosis of Attention Deficit Hyperactive Disorder (ADHD) last week. This is the good news. Finally we have an explanation for why Luke is constantly on the go, why he finds it hard to concentrate, finds it hard to socialise and play with others. For those who want to read more about ADHD you can do this here.
Luke's school were the first to really bring this to our attention, although it had been briefly mentioned before.
So the bad (again it's about perspective) news is that we have been given the choice to medicate Luke. And I am unsure how I feel about this. School would prefer his to be medicated because he is better with the other children, his concentration is good and he is more eager to learn. They've said when he is his 'normal' self he wants to learn but finds it hard to focus and always needs to be moving or making some sound. But to me, my baby is only 5 and that is a very young age to be medicated. I don't want to change him, which some people will see as a silly thing to say. I don't want him to change. Luke is my normal. I have never spent a great deal of time around young children, aside from babysitting - although my girls were about 7, 8 and 10 when I started to babysit them.
After voicing my concerns to the paediatrician we were given a weeks worth of medication to try it, see what difference it makes and make a decision. The medication is fantastic, it calms him down, he is settled, more focused and more sociable. He is nice to the other children and school, he is helpful and shares.
We spoke about alternative choices/therapies but Luke is at the extreme end of the scale and sadly it is unlikely that the would work. We spoke about behavioural therapy, a controlled diet and a specialist health visitor. Specialist health visitors are there to help with routine, sleeping habits, hygiene (toileting, bathing etc) - but we have all of that kind of sorted.
So I am now faced with a tough choice, and I have to decide what is best for Luke.

So the good news is we now have a solid reason for Luke being Luke. ASD and ADHD.

The Challenge.

30/10/14

Happy nearly Halloween! :)

Luke and I love Halloween. I love the decorations and the costumes and the chorus of "Trick or Treat" at the door. Luke is going to be a werewolf this year! Which breaks the tradition of superheroes - last year he was Batman and the year before he was The Hulk. But it should be super fun!

This week is half term and Luke hates it! He wakes up every morning and wants to get ready for school and then cries because I'm keeping him at home!
Last week I had a meeting with two of his teachers because Luke is finding school a bit of a struggle. He's fabulous with his lessons, he's really keen to learn. His teachers said he's a joy to have and he's a wonderfully bright boy which is fantastic. However, he is seriously struggling to cope with the other children. He tries to make friends but due to him being so boisterous and 'in your face' the other children don't like it. The majority of the children in Luke's unit are quite quiet and need their own space and Luke just doesn't seem to understand that.
He came home with scratches on his face from another child - school said that Luke had provoked the other child... I think that everybody needs some time to get used to everyone else before they start pointing fingers. Luke can be super annoying but attacking a child is not acceptable.
They also think there is a high possibility that he has ADHD as well as autism - which means another diagnosis process! They won't take him for full days until his behaviour improves, which will probably take a while. They're worried about his social skills and yet are keeping him from socialising - is it just me or does that make no sense? I'm not criticising, I just can't seem to understand it.

I have been challenged by my dear friend Tanya to name a few things that I am grateful for. Challenged probably isn't the right word, but I am finding it rather challenging! So here goes -

1. Luke. As ever I am grateful for my beautiful boy. He is intelligent, handsome, playful and loving - his own kind of loving! He brings light to my life and will always be my baby, even when he's 70.

2. Lauren. Whilst my step daughter is a GIANT pain in the butt, life would not be the same without her. She's annoying and enjoys to blast loud screamy music seemingly just to bother me (it makes me want to gouge at my ear drums with the sharpest, rustiest object available). She is also kind, loving, beautiful, funny and weird. You know, that kind of weird that is both strange yet enchanting at the same time? Lauren has that. And it's great.

(It has just crossed my mind that I could have grouped the kids together... but then I'd have an extra thing to think of!)

3. The record button on Sky. I love Greys Anatomy. I have 9 seasons on DVD,  I'm waiting for 10 to come out and season 11 has just started on Sky Living. I love it. The drama, the romance, the medical jargon. I love it! Love it, love it, love it! Also, The Walking Dead. I am crazily in love with The Walking Dead. The zombies, the way they live and cope in the aftermath, the rival 'gangs'. I would gladly commit bigamy for Rick and Darryl ;)
My point is, with Luke being highly unpredictable it is a God send having the option to record.

4. eBay. Hi, my name is Kirsty and I'm an eBay addict. Need I say more?

5. KA. Have you ever tried KA? If not I suggest you hunt it down and buy it in bulk. It's a fizzy drink, although you can get it in a still option. It's a black grape flavoured drink from the Caribbean. It's a lovely purple colour and so super yummy that I would glady drink it forever. It's also quite sugary so is fab for when you're feeling a bit drained and don't have time to eat.

6. Books. Any and all books. All the books I can get my hands on. I have quite a thing for a good book series. I've read the Divergent trilogy, the vampire academy books, the mortal instruments, the hunger games, twilight,  fifty shades of grey and I have the beautiful creatures box set on the way. I'm also partial to a good murder mystery and the Karen Rose books have everything you could want - murder, mystery, romance, betrayal. She does this thing where all her books are connected but don't really qualify as a series. Characters from different books pop up and their story kind of continues. One particular couple got married and a few books down are now having a baby and I think that's great, I always wonder what happens next for them. Remember kids, a book is a dream you hold in your hands.

7. Bed time! Let's have a show of hands. Who here doesn't like bed time? As I thought, none. Everybody loves bed time. Getting your jammies on, that immediate relief when you take your bra off (you know what I'm talking about ladies), getting all snug as a bug in a rug. Especially now we're officially heading in to winter. I'll be honest, I'm craving my bed already.

8. Cake. I love cake. Any kind of cake. Except coffee cake. And angel cake. I love to bake cake, buy cake, eat cake. Mmmm cake. I find the process of baking to be quite therapeutic. It takes my mind off my problems for a short while, which probably explains why I bake in bulk. Cake, flapjack, coconut biscuits, anzac biscuits, oat and raisin cookies, marble cake, lemon drizzle cake... The list goes on. And it kind of explains why I'm a little on the large side. I can't help it, it's just so yummy!

9. Hair dye. Hair dye has been a necessary companion in my life since I got an abundance of grey hair when I was 14. I'm naturally a brunette although I've been almost every other colour. I've been red, black, bleached blonde (wasn't a good look!), blue, pink, purple, green and orange. It's back to brown now though, bright colours are hard work to keep bright and I don't have the energy.

10. Google. I would marry Google if it was possible. It knows everything! I'm one of those people who knows a wee bit about everything rather than a whole lot about one thing. So for me, Google is necessary for me to live. If there was to be some form of apocalypse and we lost the Internet then my life would not be worth living! Ok,  I'm being dramatic, but you get my point.

11. Disney. It is a little sad that at almost 23 (3 more sleeps and counting!) I am still madly in love with Disney. Everything from The Lion King to Frozen. I love the classics, Beauty and the Beast, Snow White, The Little Mermaid - I'm actually wearing a little mermaid tshirt! I also love the newer ones, The Princess And The Frog, Tangled and of course, Frozen. I love that they inspire hope for love, adventure and loyalty. I love that they are beautiful and magical and musical. I love that I now have an excuse to watch to watch them! Thank you Luke :)

12. Food. There is something wonderful about food - apart from the fact that we need good to live! Food brings people together. Dinner time is family time, the time when you sit to the table, with a meal in front of you, with the people you love, and are forced to talk to each other. No Lauren with her head in her phone, or her headphones in her head. No running around like a lunatic. You can just sit, converse with your family and enjoy a meal. Food is good.

13. Knee length socks. I have rekindled my passion for knee length socks. I had thing for them in my teens, but would always wear them odd. I had a rainbow pair and a pink/purple/white pair. I loved these socks. I bought some off eBay recently and I have found my love of knee length socks again. They're warm and cosy and look cute too. I wear them to bed and they keep my feet toasty warm.

14. Boots. They're warm, sturdy and go with almost anything - jeans, dresses, shorts and skirts. I love boots. Especially the rock chick/biker type boots.

15. I'm grateful for thinking of things to be grateful for. Does that make sense? It's sad that people forget how much they have to be grateful for, no matter what it is. Life gets in the way, you begin to take things for granted and you forget just how lucky you are. I think that people seem to remember the saying "no matter what you do in life, there will always be someone better than you". Whether that means better at a job, have a better life - I don't know. Whilst this is true, people should also remember that there will always be someone who is worse off than you. Be grateful for what you have and forget about everyone else. You and yours come first.

The photos are of me and Luke at the seaside and the other is Lauren and Luke. I'm not entirely sure why they're pulling faces though.

School.

17/9/14

My baby boy had his first day at school yesterday! I'll be completely honest and tell you that I cried like a baby. He looked super smart in his uniform ❤
When we got to school I was expecting him to be a little clingy, and as silly as it sounds I was heartbroken when he just waltzed in like he owned the place and got on with it. That sounds quite bad, but I'm so used to him needing me there for support and to make sure he's ok and he didn't need me. I didn't even get a kiss!

I spoke to one of his teachers today and they said that he was a little more active today, he's been testing the boundaries. He's been playing with the other children which is great, that was a worry of mine. He had a little meltdown when I went to pick him up because the other children had gone for lunch and he had to come home.
They're easing him into it, although honestly I don't think he needs it. He's already ready to stay for lunch, he doesn't want to come home. Hopefully it won't be long until he's doing full days.

Which is fabulous news for me because it means that I can go back to work! Yay!

So smiles all round :) it looks like this may actually be a good week!

Hi :)

13/09/14

Hey guys.
How're you?
It's been a while since I wrote anything. I read back through some of my old posts and realised that I'd deviated from the whole point of this blog. It turned into a rant about completely irrelevant things - well not completely irrelevant... but it wasn't what I wanted it to be.
I think that my general attitude (due to personal circumstances) had changed at the time and that was clearly coming through on my posts. I've cheered up a wee bit though, so we should be alright :)

My baby boy starts  big school next week!
He's going into a special unit at a mainstream (normal) school, which I think should suit him well. They mix the classes. So for example, if he's super good at maths they'll put him in the mainstream lessons with the 'normal' children. I'm hoping that he'll settle in well and come on in leaps and bounds. 
I must confess that I'm not doing very well with it all though. When buying his uniform last week I got very, very emotional. In the car on the way home I was having a crying/hyperventilation fit! No one could understand me saying "What if he doesn't like school, or the other kids, or what if they don't like him? What if he can't cope and we have to pull him out and home school him?!" while bawling my eyes out and struggling to breathe. Let's just say that Luke's meltdowns have nothing on mine!
We went in to town today and gotten his school shoes and pumps from Clarks. So he's all set to go and learn something.

Those who have followed our story since the start will be pleased to know that Luke is doing well. His speech is amazing - not quite as good as other children his age but almost everyone can understand him 8 times out of 10 now. 
His behaviour is still pretty hit and miss but hopefully once he's at school he'll improve. Fingers crossed.

I know that I usually preach something about judging people or staying positive or something similar. Today I'm not going to. Today, I'm going to tell you a story about a man. A lovely man that we met in town a few weeks ago. He was one of those charity collectors that stand in the middle of town. We donated, I believe it was Help for Heroes and he looked at Luke and said "I've got one like him at home." We had a conversation about Luke and schools and Autism. It was so nice to be able to speak to someone that you don't know, that you're likely to never meet again, but have them completely understand what you're going through and how hard, yet rewarding it is.

So, if you see someone that you can relate to, no matter in what way, talk to them. Share your success stories in the hope that they'll try it and it'll work. It doesn't matter if it's about children, elderly parents, clothes... absolutely anything. You have no idea how much that little conversation will help somebody.

Stay safe guys ❤

Appreciation

17/6/14

Your children come first. That's the way it's supposed to be and rightly so. And yet I see so many people posting on Facebook "going out tonight" or whatever. And these are people with children and it happens almost every weekend. Don't get me wrong parents deserve to go out and have a good time but not every weekend when they have beautiful, precious children to look after.
My thing is that with "normal" children it is easy to find either a babysitter or a friend or family member to look after your child/ren when you want to go out.
I don't have that luxury. No one is willing to watch Luke because he is such a handful. Finding a babysitter who is able to understand the needs of an autistic child and to be able to cope with him and keep him active is difficult. I don't go out without Luke. Ever. I don't mean that in a partying way, I mean I never leave the house without Luke. Where I go, he goes. I can't set up a date night with my partner because there is no one to watch Luke. Date night for us turns into a dvd that we've probably watched 10 times already.
I love my son, more than anything or anyone, but it makes me so angry to see people that don't understand how good their lives are. I think it is so sad to see these people who don't appreciate the little things in life. They don't appreciate the small things that their children do, or they get a sticker at school and it's no big deal to them. Luke came home from nursery with a smiley face sticker for exceptionally good behaviour and my heart nearly burst with pride.
Perhaps I'm the lucky one? Perhaps the fact that Luke is different makes me appreciate even his smallest  achievements that much more.

Do you know what annoys me? How some people say "you're like a super mum!" when I'm not. I'm not the best mum in the world. I do my best and sometimes I make mistakes. Yes, Luke has different everyday needs from other children his age but I do what I have to do. And others who don't know Luke or his diagnosis have nothing nice to say at all. I'm a bad parent because I'm young or his behaviour is bad because he is a naughty child. This isn't fair either. I do what most parents do, which is my best. Surely that's all that can be asked of me? Of any of us?

Going back to my original point, children come first. That's the way it should be. For example, the day before you get paid and you don't have enough food to feed everybody - you feed your kids and skip a meal yourself. That's the way it should be. You need hair dye because your gray hairs are getting beyond bad, but that £6 buys your child a pair of jeans that they need. So you continue to walk around looking like a grandma rather than the 22 year old that you are. 
I don't know if it's just the way I was brought up, or my morals. I don't know what it is that makes me think this way when many of the people I went to school with don't. It really bothers me. Not all parents are like this, and I apologise if I offend anyone by saying it, that isn't my intention at all. As I said, parents deserve to go out, let their hair down and have a good time but not at the expense of their child. Not every single Friday and Saturday night. Everything has a middle ground, a compromise. For example I would like a date night. Just once a month to go the cinema or out for a meal with my partner. A few hours with no Luke, once a month. Is that too much to ask for? To have a small break from routines and meltdowns?

People should be more appreciative of what they have whilst they have it. Things can change in an instant. Nobody knows the 'grand plan'. We don't know what will happen or when we will die, or when our loved ones will. So people should try whilst it is still an option. People should be considerate and think of others as often as possible. If you do something wrong you should apologise, but only if you mean it. Tell the people you love that you love them. But you have to show it too. Sometimes words are empty and people need to feel loved as well as be told that they are.
Nothing is guaranteed in life. You can't know 100% that you'll wake up tomorrow. So appreciate what and who you have before its too late.

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".

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 :)

Bumps and Bruises

29/01/14






Luke is an extremely active little boy - sometimes a little too active! Luke went back to nursery today after having 2 days off due to a sickness bug that's doing the rounds at the minute, and I had to list all the bumps and bruises he has.
He has a bruise on his cheek because he decided swinging on my curtains was super fun, and the curtain pole came down and smacked him in the face! He has a blister on his hand after touching the glass dish that had just come out of the oven! He has a graze all down one thigh after running outside with no shoes on, running on a mossy patch and sliding across the patio... Bumps and bruises are a regular occurrence for Luke.
Luke has a ridiculously high pain threshold, that quite often he is a danger to himself. We have a gas fire in our front room and he sits really close to it, and quite often doesn't realise just how hot he is getting. He touches hot things and doesn't immediately feel that they are burning him, and so he holds it for 5 or 6 seconds before letting go.
He also has no safety awareness and no sense of fear. In a lot of ways he is a danger to himself and others around him. I've had to start filming him when he's doing things, so that when I have to take him to A&E I can show them what he does (the way he's going it will only be a matter of time!). He has currently taken to climbing up on the furniture and jumping off it...


Bumps and bruises are inevitable with any child, but having an autistic child who is active and a bit of a daredevil, means that you have to be super vigilant at all times. You know how some people say "You're making me tired just watching you"? That actually happens with Luke. You get so physically and mentally tired watching him constantly. You can't even leave him alone long enough to go to the toilet without him doing something. But his safety and well being are my highest priority. I hope that one day I'll be able to pee in peace, but until then I'll always be watching him like a hawk.




Lukey is an escape artist. I call him my little Houdini. I always lock the door when we come in, but Luke can work the keys. I take the keys out, but he knows which key goes in which lock. So I made his dad put chains on the doors so that he wouldn't be able to get out. So all he does now drag something up to the doors and takes the chains off. Sometimes people forget to re-lock or re-chain the door when they get in and Luke runs off. So it can be very tiring some days.
Luke is also quite the naturist. He hates wearing clothes, particularly trousers, pants and socks. He's OK wearing them in public, but as soon as he gets home they come straight off. He has sensory processing disorder as well as the autism and it's a little too much for him. He doesn't like to feel confined in his clothes, and sometimes he doesn't like the texture of his trousers, or the way the clothes touch his skin... Some days he keeps his t-shirts or jumpers on, but most days they come off too and he ends up running round as naked as the day he was born. So, for anyone who has or will be visiting us at home, Luke's nakedness is a common occurrence for us and we don't think anything of it. I understand that it can be quite as shock for new people to see a 4 year old running around with no clothes on, but that's what Luke needs and if he's happy then I'm happy. 


We have very good days and very bad days. However, thankfully majority of our days are mixture of good and bad.


Some of the comments I've been getting about my blog are fantastic, and I really appreciate the support, the encouragement and even the fact that any of you bother to read it! I only really started this as a vent for myself - sometimes a girl just needs to rant and rave about things, and writing it down seems to help. But I just wanted you all to know that I'm not writing this for recognition, or sympathy or anything, this is purely for myself, my one selfish thing. If I can educate a few people along the way then that's an added bonus. If someone reads this who has autistic child with any similar traits to Luke and it helps them to know that they aren't alone, then that is also an added bonus.


Take care guys :)

Everything Is Different

28/01/14


When I was at school, I wasn't what you would call one of the popular crowd. However, I had plenty of friends. I had the ability to find something in common with everyone, and therefore was quite easy to get along with. I'm not saying it was a walk in the park - I could be nasty, I could be a bitch, according to a few boys I was friends with I had quite a temper and that usually ended up with painful private areas for them.
I always tried to make people feel comfortable and accepted for who they were. I would fight for anybody who needed it, both figuratively and literally.
My point is, I had friends. I had my inner circle of 4 or 5 people, and I had the outer circle who I always made time for too.
I left school 6 years ago, and I find myself with 3 friends. 3 real friends that I speak to regularly and see occasionally.


I got pregnant with Luke when I was 17 years old, and he was born 2 weeks after I turned 18. A healthy, happy, 8lb 13oz little boy. And then the friends started to dwindle. No one wants to be accompanied by a baby everywhere they go. The invitations to go out stopped, the offers to come round to my house stopped. At this point I had 3 friends. One tried to get with my partner behind my back, so she soon got kicked to the curb! One disappeared into thin air, but one I still see on a semi-regular basis. She has a life, I have Luke and we try to work around each others schedules.


I have 2 friends that have come back in to my life just recently. Well, one was about 18 months go... One is a lovely, lovely person. My bestie :) He works down the road from where I live and so we see each other kind of regularly, it just depends what shifts he's working. I've known my bestie since I was about 7, through a school holiday play scheme. We went because both of ours parents worked for the local council. We lost touch for a few years, but when we started talking again it was like we'd only seen each other yesterday. He's a true friend, and I wish for every happiness for you in the future. Will, your friendship, wisdom and loving advice mean the world to me.


My other friend is Jay. He came to see us last Friday, and is coming again this Friday. He is lovely, funny and he likes my boy. He is patient, and playful with Luke, which I amazing as not people like to be around him for any length of time. I've not seen Jay for about 6 years and it's so nice to be back in contact with him.
So, after people a semi popular girl at school, I am now down to 3 friends. And it's lonely. My days are lonely, with only Luke for company. I love Luke very much, but sometimes it would be nice to have some adult conversation.
People don't like to see us, because majority of them don't understand Luke. They doesn't understand his autism or why he behaves the way that he does. They become uncomfortable and 9 times out of 10 are never to be seen again.
When I try to explain, they think I'm talking about him too much and that also makes them uncomfortable.
On the bright side, people know and understand that Luke is my life. He is my main priority. So perhaps that is why they don't invite me/us anywhere... Who knows. I also don't want to put people on the spot by asking them, and quite frankly I'm not really sure that I want to hear the answer.
Other people who have children don't understand why I was so excited and proud of the little things that Luke accomplishes. Luke finally came out of nappies 6 weeks ago. He is now completely dry at night time!! YAY!! But other parents don't understand why that is such an achievement for us. But it is! We were told that Luke would be severely behind everyone else, even our paediatrician is amazed that he is toilet trained. Luke's achievements may seem like small things for the people whose children have already accomplished it or did it long before. But everything is an achievement for us, when he doesn't manage to do something I don't see it as a failure - it is merely a stepping stone towards an achievement.


People often ask me how I'm so optimistic all the time. I'm not. I have days where I don't want to get out of bed (not just because it's warm and super comfy!). I have days where I need to beg somebody else to watch Luke because he's having a bad day and I can't take any more. But I always put a smile on my face, I always try and tolerate the vast majority of people who decide to judge Luke's behaviour and come up with the wrong answer. If they catch me on a bad day I usually rip their heads off like a mama bear protecting her cubs (hence the name).
I've had this thing, almost a mantra, since I was about 11. It's really quite simple, and not all that unique. Many people have the same one. 


Mess with one of my people, and I will mess with you.


This has applied to both my friends and my family, and still does now. If any of my friends needed me, I would be there. I almost get something going on that resembles Liam Neeson in Taken. You know the whole "If you are looking for ransom, I can tell you I don't have any money. But what I do have is a particular set of skills, skills that I have acquired over a long career... Let (insert name here) go now, that will be the end of it. I will not look for you, I will not pursue you. But if you don't, I will find you and I will kill you".


So, I haven't acquired skills over a long career, but I have acquired skills from martial arts. I wouldn't literally kill someone, but I'd kick their ass. Both of my kids know this, I will always have their back.


We had a bit of a strange weekend. Luke has been super sensitive to everything this weekend, and had a few meltdowns over Saturday and Sunday, so my Liam Neeson/Mama Bear thing came into play a few times.
I've found something amazing though. On eBay, I've little cards (business card size) to hand out to people who feel the need to stare and comment about Luke's behaviour. They explain that he has autism and why he's behaving the way he is and then very politely says that I am happy to answer questions, but rude comments and stares aren't very helpful. I have some on order!
Anyway, it turned out that Luke hasn't been feeling very well. He was sick yesterday morning before nursery, and so has had to have 2 days off. Luke is verbal, but not very much. He has limited vocabulary and struggles to communicate his wants and needs to us - but majority of people can't understand a word he's saying. So he couldn't tell us that he didn't feel very well - and I was dragging him round the supermarket and such like as normal.




Just because people can't speak, doesn't mean that they have nothing to say.

Stupid People

We seem to be having nothing but bad days this week.
So far today Luke has had 2 meltdowns.
We went into the city centre today to meet my mum for lunch, which meant getting the bus. Luke is a bit hit and miss on a bus anyway, but he always sits at the very back of the us on the right hand side. Someone was in 'his' seat so he obviously couldn't sit there and then proceeded to do nothing but scream the whole way into town - thankfully its only a 15 minute journey!
 
Some of you will be thinking 'he's a toddler, he's bound to have tantrums'. You have obviously never been near a child having a meltdown. A meltdown can last anywhere from 5 minutes to 2 hours with Luke.

So this is the difference between a tantrum and a meltdown.

Temper TantrumsA temper tantrum is very straightforward. A child does not get his or her own way and "pitches a fit." This is not to discount the temper tantrum. They are not fun for anyone.
Tantrums have several qualities that distinguish them from meltdowns.
* A child having a tantrum will look occasionally to see if his or her behaviour is getting a reaction.
* A child in the middle of a tantrum will take precautions to be sure they won't get hurt.
* A child who throws a tantrum will attempt to use the social situation to his or her benefit.
* When the situation is resolved, the tantrum will end as suddenly as it began.
* A tantrum will give you the feeling that the child is in control, although he would like you to think he is not.
* A tantrum is thrown to achieve a specific goal and once the goal is met, things return to normal.

MeltdownsIf the tantrum is straightforward, the meltdown is every known form of manipulation, anger, and loss of control that the child can muster up to demonstrate. The problem is that the loss of control soon overtakes the child. He needs you to recognize this behaviour and rein him back in, as he is unable to do so. A child with autism in the middle of a meltdown desperately needs help to gain control.
* During a meltdown, a child with autism does not look, nor care, if those around him are reacting to his behaviour.
* A child in the middle of a meltdown does not consider her own safety.
* A child in a meltdown has no interest or involvement in the social situation.
* Meltdowns will usually continue as though they are moving under their own power and wind down slowly.
* A meltdown conveys the feeling that no one is in control.
* A meltdown usually occurs because a specific want has not been permitted and after that point has been reached, nothing can satisfy the child until the situation is over.
Unlike tantrums, meltdowns can leave even experienced parents at their wit's end, unsure of what to do. When you think of a tantrum, the classic image of a child lying on the floor with kicking feet, swinging arms, and a lot of screaming is probably what comes to mind. This is not even close to a meltdown. A meltdown is best defined by saying it is a total loss of behavioural control. It is loud, risky at times, frustrating, and exhausting.ESSENTIALWhen your child launches into a meltdown, remove him from any areas that could harm him or he could harm. Glass shelving and doors may become the target of an angry foot, and avoiding injury is the top priority during a meltdown.

On a good week, we get one meltdown. On a bad week, we get between 4 and 10.


So on Facebook today, I've seen a picture posted by a Christian group that says "God controls the weather and has out tornadoes and diseases such as autism and dementia on Earth as punishment for gay rights and legalised abortions". I've tried to upload it, but it won't let me.
Needless to say I hit the roof and got in to a full on argument with them!
I said that I am not gay (although fully support those who are), and have never had an abortion. I don't do drugs nor have I ever gone into prostitution. So why would God be punishing me or my child? The answer I got was because I do support gay people, I condone abortion in the right circumstances and our country allows (to a certain extent) the use of drugs, I live in sin (I'm not married and live with my partner) and because I had a child out of wedlock. Oh, and because I'm an atheist. What a bunch of absolute morons!
If that is their God then we need to have some serious words! Their God needs to grow up and catch up with the times!
I'm not anti-religion - I think people have the right to believe in whatever they like, even if it's pink unicorns or aliens. I, personally, need some solid proof before I commit to anything.
So, after a lengthy argument, it was decided that I'm going to burn in hell for my sins. So much for all sins being forgiven. So I rocked the boat a little and said "SMITE ME, MIGHTY SMITER!"


Rant over for today guys :)
Please just bare in mind that people are not always what they seem.

One Of Those Days

21/1/14


Sometimes, you have to put on a brave face. You have to smile, you have to pretend that your child went to sleep at a reasonable time the night before, you have to try and not complain too much because quite frankly, not many people are interested. You have to try not to be offended when people say 'you look tired today', or 'Luke doesn't seem very happy today'. You have try not jump down people's throats when they ask, what seems to me, stupid questions. "Is he like this often?", "You've got your hands full with that one".
 You have to listen to everybody else's troubles and try and give them advice, but when you want someone to talk to there seems to nobody there.
Just today, I've had 3 people telling me their life stories and their problems. A lovely old lady at the bus stop was telling me about her grandchildren and how she's got to have an operation...
A friend of mine is telling me all the woes or her life - I care, don't get me wrong, but when I want to talk to her about my woes she's always busy.
The only person I can really vent to is the ever wonderful Fiona at Luke's nursery. As ever, I am extremely grateful to you - as are the other parents you see.


For those who don't know, I also have a 15 year old stepdaughter - Lauren. The rule seems to be that a teenager's life is full of drama. So on top of an autistic 4 year old, I have a drama filled 15 year old to contend with too! Problems with school, with friends, with teachers, with hormones, with boys... It's all very tiring! I would like to take a moment to sincerely apologize to my mum and dad if I was ever that bad - truly, I'm sorry.
So my point about Lauren is, she says no one has time for her. Luke gets all the attention, so on so forth. To a certain extent, he does. You can't leave him alone for more than 30 seconds before he goes into destructive mode, screaming, throwing things etc. But, I thought I always made time for her, I always listen when she is saying something, I send her silly pictures that I find to make her laugh, I make her favourite food as often as I can so that she knows she is being thought of and not being neglected. Apparently I was very wrong. If anybody has any tips on how to juggle a hormonal teenager and a special needs child, I would be very grateful to hear them.


I have stolen a fantastic idea from a dear friend and I have made a 'Happy Jar'. Whenever something happens that is good, I scribble it down on a piece of paper and put it inside. On a bad day, I can look at one or two and remember that that whilst the life is bumpy sometimes, they are really just little pot holes in the road.


I saw a picture the other day on the Autism Facebook page, and I was quite offended. It said "It's ok to be a glow stick, sometimes we have to break before we can shine". Luke is not broken, nor is any other child with or without disabilities. Luke is different, and let's face it, if everyone was the same life would be so dull. To imply that, is rude and disrespectful - and yet shows the lack of understanding for what is becoming a more frequently diagnosed disorder.
10 years ago, 1 in 1000 people were diagnosed with ASD. 5 years ago, 1 in every 500. Today, 1 in 100 people are diagnosed  with some form of Autism Spectrum Disorder.


Autism is one of those things that isn't heard of, unless someone you know has an autistic relative, or a child at your child's school has it. I think that because autism is becoming more and more common, that awareness needs to be raised so that everyone knows about it. 
No one really knows for sure what causes autism. Some say it's the vaccines that you give your children as babies, some say it's all the chemicals that are in the food that we eat and the air that we breathe. In Luke's case it could have been the meningitis he had at 5 months or any number of things. But regardless of what cause it, I think that people need to know about it.
No person with autism is the same as another person with autism. Some may share common traits, but they are never identical in behaviour. Some are quiet, some are loud, some are genius', some a mentally limited.
As always, I am grateful for my child as he is :)
No one will ever love you as much as I do Lukey, never ever xx




Sorry for the rambling - it's been one of those days!

Bad Days and Good Days.

17/01/14


Today has been a bad day. Bad days are expected to a certain extent with all children, but with an autistic child it isn't once a month as it is with 'normal' children (I use the term normal very loosely, if everyone was the same it'd be super boring!). Luke has roughly 3-4 bad days per week. This can be anything from screaming fits, to meltdowns, to violent tantrums. He throws his toys in people's faces, hits, bites, kicks and spits.
So today, Luke has thrown a die cast train in my face (Ouch!!), trashed the front room twice (once after I cleaned up the first time) and screamed pretty much all day for no apparent reason.


Luke has a lot of bad days, and bad nights too. His sleeping patterns are hit and miss. He's usually in bed between 8pm and 9pm, but quite often is still awake in the early hours of the morning - which means I am too. He's not been to bad for the last week, but it'll go back to normal soon enough.
As I've said before, we're not as bad off as some people are, and my heart goes out to those people. So if you see me, and I look like death warmed up and more bags under my eyes than East Midlands Airport, please don't say how tired I look, or comment on the fact that I have no makeup on and haven't done my hair.


We've been given the choice to medicate Luke when he turns 6, which isn't for another 2 years, but at the minute I don't want to. Life is difficult at the minute, but I don't want Luke to end up like a zombie. He's my baby and I love him just the way he is. Although if I call him my baby he says "No baby, I Luke".


 His speech isn't great, before he started nursery his vocabulary had about 5 words in it. The speech and language therapist has put his speech and understanding at the same level as a 2 year old. We both try our best to understand each other, but if Luke can't understand what people are saying to him he shuts down, and the same if you can't understand him. We have a few tricks to get around it - sometimes if it's clear he wants something but not what it is we'll ask him to show us and that seems to help. I think the key (for me anyway) is to just accept your child for who they are, and try your best. No one can ask more than that.
 Plus, I've started to teach him makaton signs. Which are brilliant! He can now sign, car, bus, tree, aeroplane, bird, drink, toilet, food, please and thank you.

We've been remarkably lucky with the professional side of things. Luke only started nursery in January 2013, and no one knew he had special needs. He's been this way since he had meningococcal septicaemia at 5 months old, so I didn't even know. Having never had much contact with babies or small children (babysitting jobs and hobbies all had children over 8 years old), I didn't really notice that he was different. We missed his 2 and half year review with the health visitor because of a bereavement in the family and never had another appointment, so when he went to nursery they weren't prepared for his additional needs. On day 2 of being at nursery the SENCo (Special Educational Needs Coordinator) took me to one side and said "There's something not quite right with your son", which immediately got my back up. I don't know how I'd begin to tell someone that I think there child is 'different', but that would definitely not be the way!
I phoned our GP and made an appointment for the following day, we were then referred to the paediatrician and health visitor.
Luke needed 2:1 support at this point, but at the minute he seems to be doing well and has 1:1 support and is in a group at singing and story time.
Within 3 months, we had an appointment with the paediatrician and he was going to get reports from other professionals before making a diagnosis. Skip forward another 3 months, after having blood test (in case it was a genetic thing), seeing speech and language therapists, the educational psychologist and the health visitor, we had a diagnosis of ASD (Autism Spectrum Disorder). We now have a statement of educational needs (which is needed to get into special schools) and a placement at an extremely good school which specialises in autism, and he starts in September. Other people haven't even had their statement yet, so we are incredibly lucky that it has all been moving so quickly.


The school we have chosen is a mainstream school, but has incredible special needs programme. They try to put the 'special' children in with the mainstream children where possible so that they are pushed to achieve - but in a nice way. So, if Luke is particularly good at maths, he will be in the mainstream classes with the mainstream children, but will be in The Arc for the other lessons.
Luke is a bright boy, and so I think he needs the firmer route of education. When we were looking at schools for him we went to our chosen school and another which was purely for disabled children. Whilst the other school was amazing, it had a higher budget, more resources etc. the lady that we saw said that a good day for them is when the children acknowledge they are in the same room as them. So that wasn't a fit for Luke.


I am truly grateful for the help Luke has received, and also as ever to Fiona for all you have done for us both.


Please, remember that people aren't always what they seem on the outside. An age old lesson we were all taught as children - never judge a book by it's cover. And 'if you have nothing nice to say, don't say anything' seems pretty appropriate too.