Autism Awareness Day

31/03/16

It's been about eighteen months since my post but I've decided to try and get back in to it. I hope you don't mind me waffling on again.

So, it's Autism Awareness Day on the 2nd of April. On the one hand, I think 'Yay, awareness' but on the other hand I think 'wow, one day. You people have no idea how much we struggle for the other 364 days of the year'. I'm completely aware that that makes me sound like an awful person but hey, it is what it is.
I wouldn't wish autism on anybody. It's a horrible thing to have to go through as a parent, never mind actually having it. On top of ASD, Luke also has ADHD and was recently diagnosed with SPD. SPD is Sensory Processing Disorder but I'll talk about that another time.
We've been on an emotional rollercoaster with Luke and whilst it's been educational, it's also been exhausting. We've been on courses, had countless appointments with professionals and teachers, we've researched, we've tried new techniques - most of which failed miserably. We've had sleepless nights; either because we've been worrying or we've been up with Luke at all hours of the morning. We've cried, we've laughed, we've pulled our hair out and we've counted to 10 a million times.
So far, it's all been worth it. Luke will be 7 in November. He'll be going up to junior school in 2017 and before I know it, he'll be a fully grown man. It's been a journey but I know that that journey will never end. I just hope that everything we're trying to do for him will make a difference.
It's not just Luke though. My step-daughter, Lauren, had a rough few years as she hit puberty and then turned in to an almost adult. She's 17 at the moment and is currently going through the process of being diagnosed, too. She's left home and moved in with her boyfriend a million miles away, so she's got to be on the high-functioning end of the scale but it looks like she's got it as well. Hopefully, she won't have the extras that Luke has though. I'm keeping my fingers crossed.
Still, I know that we've been lucky. Some children have more complex needs than Luke and I can honestly say that I'm happy that we're in the middle. It could be better but it could also be a whole lot worse.

Luke really is an amazing child. I know that I'm probably being biased but seriously, the progress that he's made is unbelievable. This time last year, Luke could barely speak and when he did it was rarely understood by someone that wasn't family. Now, he can talk in full sentences and most of the time, people understand him. His social skills have come on in leaps and bounds - sometimes I think he's more social than I am. Through speech and language therapy, medication and perseverance, Luke is almost a completely different child.
We still have days when I want to rip my hair out, sometimes those days are more often than not, but I know that one day it will all have been worth it. I suppose I don't really know it but I hope it and hope is a pretty powerful thing.
Without hope, I don't think that we would have made it this far. Without hope, I don't think that I'd be able to keep moving forward.
Whatever you believe, be it religion or science, keep the faith and keep hoping for the best. Work for it. Push yourselves and your loved ones to be the best versions of themselves that they can possibly be. Life is about perspective, so keep seeing that glass as half full.

Autism, in my opinion, should be widely recognised. One day of awareness just isn't enough for the children and adults that have to live with it everyday or for those that have to help their loved ones through it. One day isn't enough for people to understand. One day isn't enough for people to learn and understand that my son isn't worth less than their 'perfect' child. It isn't enough but for now, it will have to do.
On this year's Autism Awareness Day, I hope that those of you with autism, or those of you that care for someone with autism, know that you're not alone. Know that their are people out there that understand the trials that you face every day. There are people out there that are more than willing to be an sounding board, a shoulder to cry on or to just make the dark days less dark.

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.