Today I was trying to dig out an old photo of me as a child for my 40th birthday next year. I got lost in the nostalgic process of browsing through pictures. Inevitably, 98% were of my children from babies to toddlers. That is when we seem to all go crazy with a camera, and in time we decide we might just rely on our memory. I came across one photo of Alex which every time I see brings a huge smile to my face. For no apparent reason this just captures his spirit for me. It got me thinking about what has happened between when this photo was taken in May 2007, and now. And then I started to wonder, what would I have liked to have known then that I know now.
Hindsight is great, and we can all look back and beat ourselves up about the things we got wrong, but the reality is we make the best decision with the information we had at the time. So what have I learned over the last five years that I wish I knew back in May 2007?.... I decided to make a list of things I have picked up, both emotional and practical that has helped me be a better parent today. I separate these lists as they are quite different. Today I want to write about my emotional milestones, and then I will do the strategic practical things on a separate post. So here we go, hang on for the ride, we are taking another leap into my obscure mind!
Love your child just the way they are - it may seem obvious but with a child with difficulties it is easy to always be looking for something else. Love them not how you wanted them to be, how you you thought they could or should have been, but just for who they are. It can be an easy trap to spend our lives trying to change/help/improve our children, but if we don't stop and love what is in front of us we are missing the journey. These kids are not scientific experiments who constantly need fixing. They are just kids who need to play, love, and be children.
It is what it is - accept the strangeness of autism without going crazy looking for answers. We will never understand the autistic brain first hand, so some things we just have to look at and say 'I don't know why he does what he does, but he does, so lets move on'. Answers don't always bring clarity.
Our children don't read textbooks - I have a whole bookshelf of dusty brand new never touched books on autism. (Sorry to all those people who have so kindly thought of me and bought me a book on the subject). But for two reasons I rarely delve into books. Firstly I have to be in the right emotional state to handle it, and so far I've not been there!!, and secondly most of the information you need is absolute logic and sitting right in front of you. Of course there are tonnes of brilliant books that can give support, advice, guidance etc. and I have indulged in the bits I can handle, like on toilet training disabled children, or dietary advice, and there is a wealth of information if and when you can face it. But our children are not reading these books. They do not do a textbook version of autism, or behave like someone else's child. They have their own unique brand, entwined with their own unique personality. And now when my children don't fulfill the textbook version of autism, I remind myself, they haven't read the book yet on how they should be!!
Change happens at a different pace in our world. Every new parent seems to go through a phase, me included, of desperately looking around for older children to get an idea of what your child may be like as they grow up. This is both scary and self destructive, and heart warming and optimistic. Change and improvements in our children can be at a very slow incremental pace, so we can forget in time where progress has been made, but looking at older children reminds us, it does come in time. One key motivation for me to write this blog has been to keep a diary of events. I sometimes feel we are going in ever decreasing circles, then I am reminded how things used to be and I realise change has happened but I was too close to notice it at the time.
Autism can be really cool!! Don't get me wrong, I am of the school of thought if my children could have a regular life without these challenges, then I would grab the chance with every limb. But with disability sometimes I have felt (and especially they way we are assessed by Social Services, NHS etc) that it should all be negative. Somehow I feel a pang of guilt when we are all happy, giggling and having wonderful experiences. Surely disability is synonymous with suffering, pain and anguish! So now I can allow myself to enjoy, celebrate and realise happy families and disability can go hand in hand. I have learned over the years to be fascinated by autism, the brain, our development, and there are times I look at my children, and think 'there is nothing wrong with you, but the world around you sucks!'
Its okay to hate your life. As a parent (and a favourite conversation among my friends with special needs children is comparing silly things people say to us!) you are told to approach your life in a certain way. Oo - I have a lovely long list of cliches we hear -, 'It takes a special person to have a child like yours', 'You must have been chosen for these special children', and so on. Well while we all scrub our halos to shining - no - . Anyone could have a child with additional needs, there is no recruitment process for it. And it is a tough call. So for me adapting to this new journey has been challenging, and I am not sure putting on a brave face and saying its all cool is being honest with yourself. Why would you love a life where you have to watch your children struggle every day doing things everyone else takes for granted, where your relationship with your partner is so down on your list of priorities, as well as taking time to do things you enjoy? Why is it I should like this life where I cannot work, earn money, create a stable secure future for my children. No, I may not like it, but finally accepting it has been the beginning of change and a more positive outlook. Realising its okay to not like what you have is the first step in working out a more productive relationship with your lifestyle, and finding good things within it. It has been a big step to ditch the idea I must always smile and pretend everything is fine. Now I admit it is not, it is quite liberating, and it is starting to feel a whole lot more fine!! And if you understand that you must be in my world!!!!
Perspective - keep it real! This is singularly the biggest thing that keeps me going and gives me the strength to shake it all down and bounce back. We are so obsessed in modern times with the here and now, but really amazing things are happening if we take time to stand back and gain perspective. I often think - what would autism have been like 200 years ago? What is it like to have a child with autism in a third world country? How did parents cope with autism before TV's and computers were invented :) Even sitting in (not so sunny) Lancashire, it is easy to moan and gripe about services and support, but really we are blessed. My children are spoilt with the help they receive. And yes, there is always a long road ahead, and we should never give up pushing those barriers forward, but looking at our lives in perspective, we are doing a pretty grand job of things, and I often take time to appreciate what a great country I live in.
I heard a story once, and it goes round in my head. I am sure it is an apocryphal tale, and been adapted with artistic license, but the key point remains clear for me. It is a story of a bank robbery. A bank manager was working in his office when three armed gunmen entered and told him to open the safe. Scared beyond belief, he feared for his life. In that moment trying to keep his composure and not get him or anyone else killed he had a realisation. He realised at that moment in time he had a choice. And his choice was that either this event would haunt him, fill him with fear and consume his life, or he would make the conscious decision that it would not. He worked out it was his decision whether the traumatic events of the day would continue to have a negative impact. He survived the robbery, and on being interviewed some time after was asked how he had managed to go back to work with what had happened. And he answered, 'every day I wake up. And I tell myself, today I have a choice. I can choose today will be good, or I can choose to let those things get to me. And it doesn't always work. Some days things still get to me. But in telling myself I always have a choice, consciously I am working at making things better until that becomes the habit.'
A strange tale you may think. But so many mornings I wake up now, and just think - I can choose how I feel about today. I can choose whether it gets the better of me, or whether I rise above it. And like the bank manager, it doesn't always work, but if being aware that the responsibility of how I feel about events lies within me, then I am already empowered to have a better day.
And so that is my philosophical mind dump!! Later I will be a whole lot less 'female brain', and will start talking practical sensible stuff (hah!! dream on) :)