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.