Like many girls, from a young age I had a fairytale vision of how I wanted my life to pan out. When I looked to the future the chapters to my happily ever after story looked something like this in my minds eye (as a very quick, rough guide!):
- Children leave home
- Children marry
- Children care for parents if needed
As I got older I started ticking off some of the major chapters of my story. Life was good. I had the main ingredients for my happily ever after but then out of the blue the story changed forever.
So just how much can your child’s autism diagnosis change the story so much? Truth be told, we don’t know how much it will change. He is only three years old. Many, many things could change with his developments, but this doesn’t stop my mind wandering.
Until D-Day (Diagnosis Day), I had been very short sighted with what impact autism could have on our lives. I was very much focused on the short term looking no further ahead than primary school. Now, I have considered as far into the future as my headspace will let me. These are some of the things that hang over me like a huge grey cloud, they are some of the chapters we don’t yet know about:
- Will The Monster ever talk? – I have (I think) accepted he may not and if he does, is likely to not have the same level of speech as a typical person. The thought of never hearing my child’s voice (actual words) makes me want to weep. The thought of the frustration getting worse for him makes me want to wrap him in cotton wool and always be his voice. Obviously I can’t do this indefinitely. Even now people probably wonder why I answer for him when strangers ask him questions.
- What type of school will he go to? – this is work in progress. Check out some of my other blogs for information on where we are at. When we have a child we never imagine they will need a specialist school and they may need 1:1 support.
- Will The Monster be able to lead an independent life? Will he live with us permanently, will he require sheltered acomodation? This is one of the biggest concerns for me and it is very much the waiting game to see what the outcome will be. When we have children we teach them and raise them to be independent. We are doing this from a real young age, without probably realizing it. For example, dressing, eating etc. We are basically training them to be able to live without depending on us. So we can pack them off to university, downsize and get our lives back. Will this ever be the case for us?
- We know that autism is a life long condition. There is no cure. When we’re long gone, who is going to be around to care for him? Another one that makes me feel sick to my stomach. How will he deal with anything happening to us and what provisions can we put in place to know that he will be OK in the event that we are no longer around? Typically you leave your children your legacy, your estate etc but this won’t be enough for The Monster. What if he doesn’t need bricks and mortar but requires the same structured routine. Who is going to know him and all his quirks like we do?
- It dawned on me very recently that my career is over. Or as I’ve told a few people, my life is over. Sounds dramatic but it’s hit me hard and I am struggling with this at the moment. I am ambitious. I am driven. I have so much to give. I want to be successful. I want to work. I want to provide for my family. I want a comfortable lifestyle. I don’t want to be just mum (albeit the most difficult job on the planet). I don’t want to be reliant on the state. But how can I juggle this when wrap around care / after school club likely won’t be an option. Even if it is, will The Monster cope with such a long day? When we have no support network to lean on for regular help and when a holiday club / play scheme won’t be appropriate for the school holidays. Any jobs out there that cater for people like me? I can start at 9.30am (provided we have had no meltdown at school and the traffic allows me to get to work on time), I need to finish by 14.30 (to get to the school pick-up for 15.00, based on a job being local enough to school), I will need all school holidays off. Oh, and I will probably need a fair bit of time off for appointments, therapy sessions etc.
- Me time / us time. Will we ever get the chance to travel as a couple again, will we ever get to enjoy just a few nights taking time out. Will we be able to retire (probably not based on the above!).
- There is a ridiculously scary statistic that 80% of couples with special needs children split up. They don’t make it. I couldn’t do this without my sidekick. I’m determined not to be part of that statistic but this puts into perspective the added pressure we’re under on a daily basis.
Our story so far has taught me that you’re only ever a chapter away from your story changing forever. Having a child with autism changed ours. It is going to be full of adventures, trials and tribulations but ee by gum it’s gonna be the best book ever.