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

Time for school!

This last year has without a doubt been the fastest of my life. Sometimes I wish I could just press the pause button while I try and catch my breath once in a while.  L has his last day at nursery tomorrow. His very last day. How on earth did that creep up so quickly?! My little man is growing up and will soon be venturing into the big world of school. I have such mixed emotions about it all. I'm a bit frightened and anxious about how he will cope in such a big environment. I see him as a tiny little fish in a big huge pond. I visualise him at lunchtime in the dinner hall buying his lunch and carrying his tray to a table to sit down. It makes me want to cry. Imagining him in a crowded, noisy room, without me to help and guide him. It makes me very nervous. On the other hand I'm excited for him to start this new chapter in his life. He is ready for school and ready to learn a lot more. He is interested in things and starting to ask questions about things and I'm sure school is going to be fantastic for him. It will be me who has to get used to the change, not him. He will take it all in his stride while I worry quietly at home.

My baby girl had her first birthday last month. It really does feel like she was just born yesterday. She is becoming such a big girl and I love watching her grow and develop. We got some good news at the hospital regarding her tests at Yorkhill. Everything is looking healthy and normal so just need to get her MRI done and assuming all is ok with that then we will be discharged from the consultant and just under the care of the eye clinic for them to monitor her vision as she grows. She is such a little character and you can see she dotes on her big brother. She gets excited when L enters the room and follows him around grabbing at him. They take toys from each other which is quite funny at times! L can be very sweet when R is trying to grab his lego and he often goes to get her some 'baby toys' so she leaves his toys alone! It's taken a while but there is a sibling bond being forged and it's beautiful to see.

Apparently life is what happens while you are busy making other plans. It just happens. It passes us by without ever truly appreciating it. In the whirlwind of work, running a home, being a wife and raising 2 children you kind of get lost in time and the days quickly roll into weeks which roll into months. Before you know it another year has passed. Then 2, then 5... I remember being pregnant with L and having all of these lovely ideas of what he was going to be like and how I would parent him - not realising that it was really out of my hands and life was going to take a turn a road I wasn't expecting. That was 5 years ago. Five years have passed in the blink of an eye. I hope the next 5 years don't pass by so quickly. Life is precious and painfully short. It's very scary how fast this roller coaster can travel. All anyone can really do is hold on and enjoy the ride!

Would I change him?

Things have been ticking along with not much happening at the minute. L has still been suffering with catching a sickness bug again and unfortunately passed it on to R and S so there have been a lot of sleepless nights while everyone has been under the weather. Miraculously, I seem to have escaped it although I have felt on the verge of it several times but I'm not sure if I've been feeling ill or just insanely tired! We haven't been out much because of it and while the 3 invalids have been in their sick beds I have been chilling out and spending some time online. I am a member of a few online autism groups and it's a good way for parents to share tips and stories and have a moan if necessary to an audience who understands.

Whilst on the forum recently, someone asked the question; if someone could take your child's autism away would you accept? And then they answered their own question by saying no way because they love their child just the way they are. Very quickly many parents were echoing this sentiment. All saying the same thing. You could almost hear the sound of their fists banging on their chests as they shouted that they would never take a cure for their child's autism. It didn't matter to them and they loved their children regardless. I read through the many replies and felt a bit of a knot appear in my stomach. I felt uncomfortable reading the words in front of me because I knew if I was really honest I didn't share their thoughts. I was undecided if I should reply and go against the grain of what was being said but I believe in staying true to yourself and speaking your mind when necessary so I typed my reply. I stated that yes I would accept - I would take away L's autism. In a heartbeat.

Does that make me a bad person? A bad mother?

You see for me, it has nothing to do with love. We all love our children. It's embedded in us from the second we get a positive result on a pregnancy test. We already love this group of cells multiplying ferociously into something that will become our baby. And that love grows deeper and deeper until your baby is born and it continues to grow every day after. It doesn't stop when you find out your child isn't developing in a typical way. It doesn't switch off when you find out your child has a disability. And autism is a disability. You can dress it up whichever way you want but it is still a disability. And what mother wouldn't take away their child's disability if they could? If your child was in a wheelchair and would never walk and someone said I can fix this - I can make them walk. Would you say "No thanks, I love them just the way they are".

You see my point?

I love L. This goes without saying but if I could wave a magic wand and take autism away, I would. L is 4 years old. He has no idea he has autism but at some point probably in the not too distant future L will start to realise that he is different and I don't know what that will be like for him or what that will feel like. S said recently that in a few years you won't be able to tell that L has autism. This statement makes me sad. As if L's autism should be hidden - as if he can't be himself. I don't want him to ever feel like that. I don't want him to think he can't be himself and he has to hide his autism and who he is.

I read a lot of blogs and I read one a while ago about a mother with twin boys - one on the spectrum and one not. One day at the park, the boy with autism was watching his sibling run around with a friend. They were tickling each other and in amongst the laughter the boy shouted "stop, get off". His brother with autism jumped from the park bench and ran to his brothers aid. He pushed his friend over and sat on his chest, pinning him to the ground. The mother who was watching horrified, ran over and asked her son what he was doing. He replied "he was telling him to stop and he wouldn't". People with autism take things literally and don't always understand facial expressions or tones of voice. Her son with autism couldn't see how much fun the boys were having from the smiles on their faces or the squeals of delight in their voices. He only heard the words and interpreted them literally.

Can you imagine trying to navigate through the world this way? Trying to understand the social rules that are so easy for so many of us? Would I take this away from L if I could and make his life a million times easier? Would you, if it were your child?

All of this of course is hypothetical. There is no cure for autism and most adults with autism claim they wouldn't take a cure anyway because they are happy just as they are. Part of me wonders if this is because they don't know any different than the life they have. My view on this may also change as L grows older, but I don't see why it would. If I could do anything to make his life easier in any way then I would.

And to reiterate - it has nothing to do with how I feel about L. I love him for exactly who he is - autism and all. And that is something that will never change.

Time out

I haven't been feeling great recently and I'm wondering if everything is finally getting on top of me. I've had varying symptoms including headaches and palpitations as well as nausea and anxiety. I wonder how much a human brain and mind can take before it buckles under the pressure. R had her neurology appointment with the paediatrician and she agreed with R's consultant that an MRI scan would be the next stage which requires R to be sedated which I'm not looking forward to but needs must I suppose. At this stage we have every reason to remain positive but I just feel a bit fed up with it all at the moment and probably a bit sorry for myself and then I feel bad for feeling that way because I know a lot of parents are going through a lot more with their babies and children. I'm sure there is a life lesson in all of this somewhere. I'm just not sure what it is yet.

L has been ill over the last few days with a high temperature and vomiting but he seems to be over the worst of it now. He has also been up and down recently and is still upset with the taxi bringing him home. Every night is becoming a bit stressful with the crying starting as soon as he gets out of the taxi and continuing for up to an hour, sometimes longer. Nursery have said to ride it out and he will soon get used to the taxi routine again but this just angers me because he was used to it until the taxi started messing things around. S and I hate seeing him so miserable and it's starting to take its toll on the household so I have decided to pick him up from now on. I just want my happy little boy back and I'm sure this will make a big difference to L and as I've mentioned before, when L is happy mummy is happy.

I've noticed changes in the way L speaks recently. He normally refers to himself in the third person so he would say "L wants a drink" etc but more recently he has been saying "I want" etc and using "I" instead of his name. It's very common for children with autism to refer to their self  in the third person so for L to be moving on from this is a big step for him in terms of speaking and understanding language. He has also started calling me by my first name which is quite surreal! He doesn't do it all the time but switches from my name to mummy which I don't really like to be honest! I'm trying not to draw much attention to it because I've definitely found with L the more you try to get him to stop something, the more he does it so I'm hoping it's a phase that will pass by.  He is incredibly stubborn, sometimes to a worrying degree (I have saw him throw toys in the bin rather than do something he didn't want to) so I feel if I consciously ask him not to do it, he will just do it all the more. His conversation skills are also getting better and as I watched him and his gran together recently I was actually surprised with how well he was conversing with her. I think sometimes I don't notice a lot of the subtle changes in him as he grows since I am around him all the time and sometimes when I take a step back I can see just how much all the extra input at nursery is paying off.

In other news this week, the hubster and I are going away for dinner and an overnight stay at a nice hotel. I'm really looking forward to it as I need to just relax for a while and as much as I adore my 2 babies and the anxiety is already creeping in with the thought of leaving them, I need to just have a little window of time to just be me and enjoy some much needed quality time with my other half. It's important for any parent to be able to have some time out once in a while and when the stats say that 80% of parents to children with autism will divorce then I think it's even more important for S and I to make time for each other. Relationships and marriages don't just happen. They don't flourish by magic. They take work and effort and commitment from both sides. And luckily for us, our children have wonderful grandparents on both sides who are willing to step in when we need to step out. Without them any time out would be impossible and I don't think I ever thank them enough for what they do for us - especially my mum.

Thanks mum. You are amazing.

The early bird catches the worm

This week has been L's third week back at nursery and he finally seems to be settling back in and getting in the swing of things with the taxi again. Unfortunately his taxi broke down yesterday which resulted in S having to collect L from nursery so cue tears this morning for daddy to pick him up again. Apart from that, L seems more relaxed in general and when he is feeling like that the whole house is happier and less stressed. Like any parent - if your child is unhappy it has a knock on effect to how you feel so I definitely feel better now I know L is getting back to his old self.

R had her eye appointment at hospital this week and I'm pleased to say it was quite positive with the consultant saying her eyes looked healthy and now we just have to wait on her next appointments at two other hospitals before meeting back with the consultant to discuss the findings and how we move forward from here. When an appointment drops through the door for R, I get that stomach churning feeling I used to get when L's appointments would come in. It's a reminder that all is not well somewhere and always ignites the flames of anxiety deep down in me. I'm trying not to worry but when the most important things in your life are involved, it's hard not to stress.

Towards the end of last year I was lucky enough to take part in an autism course called Earlybird which is for parents and carers of children with autism.  The course was over a few months and involved group sessions with other parents, as well as home visits where videos were taken of each of us interacting with our child and then shown to the rest of the group at the next meeting. The course is to help parents to understand their child's autism and how to handle and cope with problem behaviours as well as learning to communicate more effectively with your child. The main reason I wanted to do the course was to meet other parents in our situation. While I have a lot of support in family and friends, and also online communities, I really wanted to meet more people who could relate to the every day challenges in raising a child with autism. During the first group video session I noticed one of the other mums start to cry when the video of her son came on. I sat across the room and instantly felt myself well up and put my head down as I wiped away a silent tear. I wished at that moment I was sat beside her so I could put my arms around her. I wanted to tell her that I knew. I knew how she was feeling because I felt it too. And there in that moment I was so glad I was on the course because no one knew how I felt as much as the people in this room. No one quite understands the exquisite pain of raising a special little person. We have all taken the same journey. We all landed in Holland. I felt a sadness when the course finished as it almost felt like a weekly therapy session and I knew I would miss seeing everyone and would definitely miss our chats. I have a desperate need and want to keep these people in our lives, to travel our journeys together, to share our tips and stories, and to just generally be there for each other. So this post is for you, my earlybird mums (and dads!) Here's hoping it's the start of some beautiful friendships.

What not to say

I have been looking through a lot of R's baby photos recently and it made me feel a bit nostalgic and I got out one of L's baby albums to flick through. Looking at his gorgeous smile and his eyes shining at the camera you would never know this was a baby who was going to grow into a child with autism. Sometimes it's very confusing and I can't quite see how it happened. When I look at a picture of him on my knee and him copying me while I stick my tongue out at the camera, it doesn't make sense that this baby in the picture has autism. For quite a long time, I couldn't actually look at L's baby pictures. It's hard to explain but it was painful to look at them. The pictures were of a time before autism hit us and the biggest worry I had was whether or not I was going to get a full nights sleep. They were of a much happier and carefree time.

It's been a strange journey with regards to how people react to L's autism. For some people it's almost a bit of a taboo subject. They will talk about anything but autism and will keep the conversation going so the 'A' word never gets a chance to creep in. What some people fail to understand is that my children are the biggest part of my life and autism is part of all of our lives through L and I would rather people acknowledged that than awkwardly skip past the subject. I would never be embarrassed or offended by someone showing an interest - after all, talking about autism and spreading awareness is only a good thing. If I was speaking to a friend I would always ask after their children. It's common courtesy if nothing else.

Some people try and give advice which can be hugely irritating when it becomes clear within 5 seconds that they know as much about autism as I know about quantum physics (which is zilch by the way). Parents have an almost uncontrollable urge to give advice to other parents, they just can't help themselves. I'm a dignified person and have smiled through gritted teeth while I've listened to people telling me that L just needs a 'firmer hand'. I've learned to just shake these little nuggets of parenting advice off while at the same time imagining slapping the person in the face.

And there are always people who don't really know what to say so throw cliches at you. What doesn't kill you makes you stronger and What's for you won't go by you. The religious amongst us say things like "it's all part of Gods plan" and "God doesn't give you more than you can handle".  These ones make me laugh the most as I don't believe in God so when people start throwing that at me it does get my back up. Was the Holocaust part of Gods plan? I know these people mean well and it's more because they don't know what to say but that's the thing - it's ok to not know what to say sometimes.

Probably the worst is the sympathy responses. People who tell me they're sorry etc. Here's a thought - don't be sorry! Of course I know people mean well and they just don't know what to say but there is no sympathy required unless there is a corpse present. Sorry is insulting. So if you are tempted to give someone in my position some pity, just don't. I doubt it would be well received. Give them understanding instead. And most of all just be a friend - to me and my son - and I promise I will do the same for you.

Not Fair

L has been back at nursery a week and seems to be having some issues regarding his taxi transport to and from nursery. L normally gets dropped off first on the way home, but before Christmas, the driver and escort started taking the other boy L shares the taxi with home first a couple of days a week and this was upsetting L so I got nursery involved and they spoke to the taxi and told them to change it back to L getting dropped off  first but they didn't so me and S collected him on these days to save him from getting upset. I think the whole thing has confused L and he got upset several times last week and didn't want to go in the taxi at all. There have been lots of other niggles with the taxi since L started at nursery and over the weekend any mention of the taxi has got him upset so it looks like I might have to start taking him to and from nursery. I hate seeing my little man unhappy and this seems to be causing him a lot of anxiety and I will do what I can to make him more comfortable. It angers me so much that the taxi has this contract yet the people involved know nothing about autism, and how important it is to keep the children's routines the same. I've spoke to them several times about L and autism and I'm sure they think I'm exaggerating and actually making things up because L is very good at keeping quiet and appearing to be fine on the outside and then exploding once he is home and in his comfort zone.  It's just a massive inconvenience we could all do without. And the reason they started dropping the other boy off first was because it was 'fairer' that way. Yeah right. Them trying to be fair has caused my son some major upset which I'm now having to try and fix. I have no idea what is going to happen now regarding it but I think I need to have another talk with nursery and if nothing changes we will just scrap the taxi altogether. I hope this week is a better one.