Appreciate what you have

I haven't wrote anything for a while, mainly because I have been so busy and I find it hard to ever have any free time to write on the blog. We moved house this summer which even though was stressful, went considerably well and L has taken well to the new house and his new surroundings. He does still ask about his old house and says he misses it but overall things have been good and I'm very happy with how well he has adapted to the move. I've reduced my hours at work and S has started a new job which has made for a happier household all round.  L started back at school last month and all reports so far have been great. The head of the support centre says he seems more confident this year and they have saw really positive changes in him so I'm delighted with how well he is doing considering he has had a house move to deal with also.

So overall things are going well for us. I was chatting to my (newish) neighbour a few weeks after we moved into our house. They didn't seem to be around when we first moved and he said they were on holiday and asked if we had any holidays planned. I said we didn't but were hopeful of maybe going away in October. We were talking about possible destinations and he asked if I had ever been to Turkey and I said I hadn't and also said I would never go there. He said they had been a few times and liked it and said it didn't live up to the bad reputation it had. I said I wasn't really bothered about its reputation but I would never go there for 2 reasons. Firstly I can't help but think there is bound to be a terrorist attack there at some point and secondly I could never laze by the pool or on the beach, eating and drinking all day knowing what is going on over the border.  Which brings me to write about something that has disturbed me massively this week as I know it has done to many more people - the body of 3 year old Syrian toddler Aylan Kurdi washed up on a Turkish beach. I cried when I saw his picture on Facebook and read about his families plight. I hugged my daughter tightly as I thought of the desperation Aylan's mother must have felt. How terrified she must have been to bundle her 2 boys on to the boat whilst smiling to them to try and hide her fear. How cold and dark the night would have been. Her terror as they fell in to the water and she knew their fate was sealed. And Aylans little body lying there washed up on the sand as if he was asleep. On a beach where people go on holiday. How many more Aylan Kurdis has there been? And amongst all of this the outrage of Ukip candidate Peter Bucklitsch tweeting that Aylan's family were greedy for the good life. Well Peter why don't you move you and your family to Syria and see how greedy you become.

The reason I am writing about this is simple. People moan daily about their lives. About how hard they are. You work too many hours. Your children won't do as they're told. You can't afford a holiday. Your house is too small. You can't find an outfit to wear to a party. You're unhappy in your relationship. You don't have enough cash. You want a new job. The list goes on.  No one ever seems to stop and think just how lucky they are. My son has autism. Big deal. It can be stressful at times. So what? We have a lovely life. We are so lucky to firstly have a life at all, and secondly to be born and live where we are. So the next time you want to moan about your kids, your home, your lives in general....just don't.  Think about how privileged you actually are.  Your children are tucked up in their cosy beds in their nice homes. They are not running for their lives in the middle of the night.  The image of Aylan's little body will haunt me for a long time. A 3 year old should be allowed to be a 3 year old regardless of where they live. Sleep tight little man. You and your brother and your mum are at peace now and you don't have to run anymore.

I hate autism - part 2

A mummy blogging friend wrote something on Facebook recently about Welcome to Holland which I have previously blogged about here:

http://autismandallofus.blogspot.co.uk/2013/11/welcome-to-holland.html

I have mixed feelings about Welcome to Holland. I didn't like it when I first read it but the pain of learning L had autism was still very raw and at that stage I don't think anything regarding autism would make me feel better. Then, in time, as the shock wore off and the pain eased I took comfort in it, and I liked the way it gently explained what it can feel like to be in my position. The part that still puts a lump in my throat is the part which talks of all the other people coming and going from Italy and talking of what a wonderful place it is and how I will always feel like Italy was where I was supposed to go. It still makes me cry when I read it because if I'm really honest, the pain of L having autism hasn't ever really went away. After almost 6 years it still hurts and I still cry about it.

It's one of the reasons I started this blog. So I could have somewhere to put my feelings and get some things out of my head. As a parent I believe the worst thing that you could probably experience is losing a child and I am in no way comparing my situation to that. But sometimes the way I feel is that I am grieving for a child. For the child who I thought we were going to have and the life we were going to have with them. All the hopes and dreams and even the type of parent I thought I would be. And as time passes it gets easier to accept and easier to live with but the pain never really goes away, because autism will never go away.

My dad commented recently about how he was worried about me, how thin I was now, how tired I looked (thanks dad!) and how I had to start taking better care of myself. He looked at a wedding picture I have in my house where I was standing with my new husband beaming for the camera. He asked me where the girl was in the picture. I replied she was gone - autism had stole her away. And that is how I feel sometimes. I'm not the person I was. I may look similar, and talk the same but the old me is gone and won't ever come back. Although the new me is maybe suffering a bit sometimes, overall it's a nicer, more kinder me in its place. Someone who views the world and life very differently now. Who really truly knows what is important - as cliche as that might sound. I've never been one for sweating the small stuff, and even more so now. And I have autism to thank for that. For opening my eyes to the real world and making me appreciate even more what I have.

And what I do have is two amazing children, who drive me to the brink sometimes but who can make me laugh and cry at the same time. A husband who is supportive of me and our family and who always sees the bright side. Someone who doesn't get down about autism and only sees the good in all situations. Someone who loves me for who I am and puts up with me whatever mood I'm in. And one person in particular who I couldn't survive without - my mum. Who is there practically on call 24/7 and who loves my two babies just as much as me. And for all the people that autism has brought into my life, some wonderful friends who I could never live without. Who just get it because they live the same life as me. And for all my old friends who I know understand why I maybe have become distant, that it's just the journey I am on and even though I have maybe drifted away from them I know it's ok because like the stars in the daytime, I know they are still there.

So I carry on with my journey. Helping my son to make sense of the world. And me, 6 years on, still trying to make sense of all of this. Accepting that our lives are different to what we thought they would be. And hoping for some love and understanding along the way. And if you ask me how I am, I will smile and say I'm fine because really I am. And I will carry on being fine and living with the exquisite pain that comes from raising a child with autism.

Autism Awareness Day - April 2nd

April is autism awareness month and today in particular is autism awareness day. People from the autism communities are "lighting it up blue" today as part of the Autism Speaks campaign to help raise awareness. I'm not 100% sure what the point is of wearing blue clothes or lighting up monuments but I guess if it gets people thinking a little about autism then it is a good thing. But for some people like me, we don't just think about autism, we eat, sleep and breathe it every day.

Today was the last day of school before the Easter break. L was happy to 'dress down' in his own clothes, a welcome change from the nightmare of 'onesie day'. We got up this morning and all was good until about 2 minutes before we left the house as L decided to blow some bubbles but saw the bubble wand was missing from the bottle. There was no time to look for it as school beckoned so cue L screaming all the way to school and me trying to distract him and calm him down. Fifteen mites later, with him still cry and shouting,  we turned the corner into school. A little girl was crying standing next to the lollipop lady and that was the switch to instantly stop L's upset as he asked me what had happened and why she was crying. And that was it. Upset over and away into school happy. And my nerves were shattered. Again.

Autism is such a funny thing, one minute everything is great and it just takes the smallest thing to turn it all upside down. And then another tiny thing to turn it all back again. Quite often with L, he can flip out and be screaming and shouting for a length of time (I've had HOURS before) and then such a strange random thing can stop him in his tracks. He is all happy and smiles and playful and I'm still reeling and shaking from the meltdown. A roller coaster is indeed a good word to sum it up.

Today 1 in 68 children is diagnosed with autism and it is thought that by 2025, half of all children born will have autism. That's only ten years from now. It is the fastest growing developmental disorder. So raising awareness can only be a good thing but tomorrow when autism awareness day is over and everyone is carrying on with their daily lives, there are people like me who never stop thinking about it. People like me who live with it day in, day out. And lighting up in blue the Eiffel Tower or the Empire State Building doesn't take away or help the challenges that my child or other children like him face every day.

I hate autism.

Every now and then a time will come where autism and me don't really get along. I'm quite a laid back person and can deal with the day to day anxieties that come along hand in hand with my child with autism, but occasionally there will be an odd day where I could easily punch autism right in the face. I was faced with one of those days this week.

This week we had 'onesie' and 'crazy hair' day at school. A fun day organised by some older school children to raise some money for charity. At least it should be a fun day. But for some children days like this are not so fun. These are the days where I hate autism. The day started out well. L had picked what onesie he was wearing to school. He didn't want his hair made 'crazy' - no surprises there, he has never liked having his hair touched. Had his usual bath, got dressed in some casual clothes, had breakfast and then it was time to go to school....so time to put his onesie on. I could see his face change but I stayed with it, reminding him of the fun day and how all the boys and girls would have their onesies on at school. He started to put it on , it was almost all the way on and then his face changed again. I could see the upset starting, he started to cry, he didn't want to wear it. He wanted his school clothes on. Then everything was wrong - he didn't want a snack for school, didn't want any lunch, he didn't want any juice, he couldn't go to school - I could see his mind going a million miles an hour, trying to figure out what was happening that day and why he was wearing something different to his usual school clothes. I quickly took the onesie off and ran upstairs and brought down school trousers and a school jumper and quickly put them on him. Once in the car he calmed down but I could see the anxiety etched on his little face. He kept saying he couldn't go to school but I managed to distract him and got a few smiles before I dropped him off. Then it was my turn to feel anxious. I felt nervous as I drove off, worrying about my little man, hoping that he settled into the day. This little boy with his school clothes on in amongst all the onesies.  Driving away thinking of how much I hate autism. How a day that should be fun for a 5 year old boy was actually full of anxiety, stress and worry. And now I was having to go to work full of the same anxiety, stress and worry. On this day I hated autism and how it controls L.

How it affects so many little parts of all of our lives. How I have to get L dressed the same way every day (left sock first, then right, pants, trousers, vest then top). How he likes his food served on the same plate, how he likes to wear tops with a pocket but with no buttons. How he likes me to make his breakfast but if he has toast with sausages and beans his dad has to make it. If we eat out and he has sausages and chips he must have 2 sausages or he won't eat any of it. How all seat belts must be fastened in the car at all times. When we are in the supermarket we must always use the self service check out (I keep the big shop for when L is at school.) How the washing machine door must always be open. How I can never hoover if L is at home. How I have to drive the same way even if it means being stuck in traffic and taking longer to get home. How he has to be first to walk out the door when we go out. How he only likes the buttons done up on his jacket, never the zip. How I have to always buy him the same shoes. How every day whilst driving to school I have to take a slight detour so he can see a No Entry sign. How I have to read the same bedtime story night after night after night after night. I could go on.

All of these things are fine. I'm so used to them and they are harmless. I do them on autopilot without even thinking. They keep L happy which keeps all of us happy. But when things cause him to get upset, that's not ok and that's when I hate autism. That's when autism sucks. But even though it might win a small battle now and then, it will never win the war. I will make sure of it.

Merry Christmas!

It's Christmas time! I know people say this all the time, but really, where does the time go?? How can it be Christmas?! It feels like L started school a week ago. To think he has completed a full term at school is crazy. I'm starting to feel panicked - as if I'm going to blink and it will be summer and he will be finished P1 and getting ready for P2. I love how much L loves his teacher so the thought of him moving on is a little unsettling. And even though I know it's still a long way off, the frightening realisation is that it really isn't. L is still coming on leaps and bounds at school. He recently asked if he could have a friend from school come to his house to play. I almost keeled over as it was so unexpected but another example of how good an influence school is having on him and how much he is growing and changing. I contacted school about it and they in turn contacted the boys mum who seemed happy to have her number passed on to me so I'm going to call her through the week and see if we can arrange something. L is notoriously bad for sharing his toys but hopefully all will go well!

So back to Christmas! L was super excited last night and I thought I was going to have to scrape him off the ceiling at times. After finally getting him to bed he slept until 8am and then rushed downstairs to see what Santa had brought. His face was a picture (as was R's!) when they saw all the new toys and at bedtime tonight he said he had "a nice day" and then asked me if I had a nice day. He was very lovely opening presents, remembering to say thank you to everyone and when his grandparents left he said "thanks for coming" which made me smile. I'm so used to prompting him to say these things so it's nice when he says them by himself. My little man is maturing all the time.

I've been keeping a close eye on R over the last few months. She is now a year and a half and still isn't really talking yet. She has one 'real' word - no - and she uses this often and in context but other than sounds and lots of babbles she has no other real speech. For a child of this age with an older sibling with autism I fear it doesn't bode well for us. But of course autism is a lot more than just not talking - it's communication as a whole. And she does communicate quite well, but I'm starting to see it as a bit one sided. Lots of what she wants rather than shared appreciation as such. I've heard before that autism is very difficult to spot in girls as the classic signs that show in boys are rarely there so at this stage I'm still not quite sure but I'm beginning to get that same feeling and I know it all to well not to ignore it. When L was her age I knew he had autism and I had already been to the GP to have him referred but with R I'm not as certain but alarm bells are starting to ring so I will keep a close eye on her. L is due a review with his paediatrician so my intention is to take R along to L's next appointment and cut out the middle man so to speak. I feel like I already know what the outcome of this is going to be - my instinct is rarely wrong - but I actually feel ok about it. What will be will be for all of us so I'm not going to waste my time worrying about it. R is who she is and will be who she will be. I just need to look at L to know that she will be just fine.

School

So L started school just about a month ago and I'm delighted to say that all is going well so far. I don't mind admitting that in the run up to him starting I had huge anxiety and many, many sleepless nights. I was desperately worried that I had made the wrong choice of where to send him to school and if he would buckle under the pressure of mainstream. Going from a nursery class of 6 to a school class of 25 wouldn't be easy for any child but I trusted my instincts and went against nurseries advice to school him in a smaller, more supported environment. And I'm pleased to say L has done me proud and in 4 short weeks has shown everyone what I already knew - that he could do it. He could stand among the rest of the children and hold his own.

In fairness, a lot of that is down to the school itself. A mainstream primary with a language and communication support centre which can nourish children with autism and allow them to blossom. L is one of 3 boys with autism in his class and they all spend 80% of their time in the mainstream classroom doing their abc's and 123's with the other children and the other 20% of their time is spent in the language and communication centre where they get speech therapy and lessons in social skills and other areas where children with autism can struggle.  L seems to have a soft spot for his teacher and always wants to sit next to her when they do any floor time. He also really likes one of the additional support needs assistants but doesn't seem so keen on the second one! The support staff in the centre are amazing and everyone is happy with how well L has settled in and his progress at school already. It's the little things about the school that I really like. Things like having a coned off area on the playground with toys in it so if any children with autism are struggling in the big noisy playground they can go off to a quieter area to play. There is also a sensory room in the school where they can go to chill out if things are getting too much. L hasn't needed either of these areas so far and seems to be having a blast in the playground. I am in regular contact with staff at school through email so I can contact them whenever I need to. Needless to say there were a lot of emails firing back and forth the first couple of weeks! I love that whatever I'm doing, if I remember something I want to mention to the support staff, I can just take my phone out of my pocket and drop them a quick line. It definitely helps put my mind at ease.

I was also concerned that L would be fine at school but meltdown when he got home, as if he would be holding in all his struggles with the social demands he was faced with all day at school. Like a bottle of coke being shaken all day only to explode as soon as the lid was off. But I'm happy to report it's not the case and so far he has been a happy little boy after school with a huge smile when he sees me at home time! I get lots of "I can't go to school, I don't like it, I need a day off..." etc but I think L is enjoying school more than he realises. He has been showing off his writing skills, which, for a boy who couldn't even hold a pencil properly a month ago is absolutely amazing.

It's true sometimes that you just have to have faith and believe things will work out but as a mum it's only natural to worry about your children. It's still early days with school but if things continue as they are I will be one very happy mummy. Well done Logie Bear, I knew you could do it!

Letting Go

As you lie here sleeping beside me

And I look at your beautiful face

I can't stop my mind from thinking

How we ended up in this place


Was it something I did?

Or was it just meant to be

Maybe it was written in the stars

That you were the one for me


My heart bursts with love for you

To the point where it's hard to bare

The emotions I feel every day

It's true my heart on my sleeve I wear


I know I don't always get it right

I know sometimes I have been wrong

But I'm trying my very best

As we try to stumble along


I will always be in your corner

Of that you must always know

And as you enter the world of school

It will be so hard to let you go


How can you go to school?!

How can so much time have passed?!

I'm really not ready for this

It's all going so very fast


Leaving you there without me

Will heighten all of my fears

I hope I can hold it together

I dont want you to see my tears


I wish I could be there with you

As you figure out this foreign land

I wish I could stay by your side

I wish I could hold your hand


I hope your teacher understands

If you don't know what to say

I hope the children understand

When you don't want to play


I will wonder what you are doing

Every minute of the day

I will wonder what you are thinking

I will wonder if you are ok


I will count down the time til I see you

And I know that you are alright

I will smother you in kisses

And squeeze you so very tight


But I guess you are growing up now

And even though it hurts me so

I guess there's not much I can do

But try to let you go


Love you so much Logie Bear, have a great first day at school. xxx