‘Yesterday morning I felt scared. By afternoon I felt a strange sense of relief. Then in the evening I felt scared again, like I’m staring in to a fog and I don’t know what’s in it. I guess that’s how it’s going to be for a while’. This is an extract from a diary I kept the following day after the ‘A’ bomb was dropped on us and we began on this unexpected journey.
When I say the ‘A’ bomb, what I really mean is the day the autism bomb was dropped on us and we were told that our youngest daughter, Anna, may have autism.
Autism. It’s not something I’d really ever thought about before; I don’t think I know anyone with it and I certainly don’t know anyone who has a child with autism. The only person I had ever come across before that had autism was Dustin Hoffman in Rainman. So although Anna couldn’t say ‘Mama’ or follow any instructions would she be able to tell me, instinctively, how many matchsticks were on the floor if I emptied the box out right now!? Of course not.
So the ‘A’ bomb had been dropped and here we now are on this most unexpected journey. Over the last 6 months google has been my best friend and my worst enemy; I’ve googled all the signs of autism to all the things I can do to help and everything in between. Two things have been astoundingly clear to me; far more boys appear to be diagnosed with autism than girls and the future for a child with autism is not always rosy. In fact, if I believed lots of things that I read, which thankfully I don’t, all that awaits Anna is a lifetime of social exclusion, bullying, anxiety and never having any friends. Thankfully I know in my heart that that doesn’t need to be the case, but I also know it’s not going to be easy.
You see, having a child with autism was something that happened to other people, and although Anna had a speech delay, I can honestly say that I didn’t think it was anything else. 6 months have passed since the dropping of the ‘A’ bomb and we’re still here, fighting the good fight and yes, sometimes I still find myself wondering where we’ll be in 5 years from now, but I don’t do that as much now and whilst there are difficult and challenging days, the dark days have thankfully left us. And when I say dark days, I mean my over imaginative mind conjuring up worse case scenarios and leaving me feeling that it would be easier to push custard up a hill than it would be to come to terms with my the fact that my wonderful Anna may have autism.
There was no way I was prepared for the chaos which life has thrown at me over the last 6 months, but I quickly realised that I had to dig deep to find the courage to get my head together, stop feeling sorry for myself, for Anna, our whole family. It wasn’t easy by any stretch of the imagination, but I had to find a way to pick myself up and just get on with it. I realised it was OK to feel thoroughly and utterly hacked off, I had no reason to feel guilty, or feel ashamed for feeling sad. I realise now that I need to turn this extraordinary scenario that I find myself in in to something positive because I’m not prepared for life to pass me by whilst I’m looking the other way, or for my children to grow up surrounded by negativity. My family deserve so much more than that. Because it is only then that I could start to see clearly and when the fog started to lift it felt better. The fact is, Anna is still Anna, regardless of what her diagnosis may eventually be.
I’ve learnt a lot over the last 6 months on this unexpected journey; there are good days that feel like walking along warm sand bare foot. And there are other days that feel like climbing Everest, with a hangover, whilst wearing stilettos and completely forgetting your map and a warm coat.
There are wonderful days when everything seems to go well and Anna says a new word, or she suddenly does something she’s never done before, like taking her coat off all by herself, and in that moment you feel like running naked through the local high street because you’re so absolutely proud, elated and crying happy tears. And then there are dark days where everything seems hopeless and you feel like falling on your knees and weeping. But you don’t because you can’t. Because there are two little people watching your every move and learning from your actions, so there is very little time to fall apart; maybe behind the fridge door for a split second whilst preparing their tea, or whilst you stand in the shower knowing that nobody can hear you then, but it’s only for a split second as you quickly need to change character and put on your my best Oscar winning performance.
Like any journey I’ve discovered it’s important to pack carefully and it’s especially important to pack light. I only keep the really important stuff with me, the things that matter. I’ve found the need to stockpile my humour, energy and positivity, preferably right near the top of my suitcase because when I need those things I need to access them quickly and I don’t want to be rooting about trying to find them and there’s absolutely no room for excess baggage.
I have no idea where this journey will take us, what stops we’ll make along the way, and goodness only knows what our destination will be. But I do know it’ll be a very long journey with plenty of bumps in the road and I expect at times I’m going to have to get out and push.
If you’re reading this then maybe you are in my position, perhaps you have a son or daughter with learning challenges, already have a diagnosis, or are going through it at the moment. Perhaps you’re a friend, a parent, a brother or sister, a grandparent of somebody like me, with a daughter like Anna. I hope that somehow you’ll find something helpful here and most of all take comfort in the fact that you’re not alone.
When the initial chaos began following the dropping of ‘A’ bomb, I don’t think I’ve ever felt so lost. Lost, alone and scared. And even in the darkest of times I think it’s important to keep your sense of humour. Of course having a child with autism is a serious subject, but life isn’t always serious, thank goodness, and quite frankly the days can be extremely entertaining at times.
For me, first and foremost though, it’s important to remember that right now, Anna is 3 years and 3 months old. Nobody can say at this stage what diagnosis Anna will definitely end up with and what progress Anna will make, but I will ensure that no limits are ever placed on her current or future abilities.
We very much love Anna, not because of or in spite of her abilities, but because she is our wonderful and extraordinary Anna. She is, like all of us, perfectly imperfect.
Photo source: Pixabay