I am a mum of two boys, my eldest is 5 and autistic. Although I was not sad, upset or angry when C was diagnosed I have found since that it is all to easy to let autism consume you. Before you know it you are drowning in the day to day issues, the meltdowns, obsessions, ridged routines, paperwork and the endless battles with the outside world. You forget to smile, laugh and have fun. You feel like you are treading mud, stuck on a roller-coaster with no exit, no brakes, no way off and no safety bars. Your stress levels seem forever on the raise and you feel at times that you can not breath.
But you must! You have no choice but to carry on. You must look and find the positive in every situation. However impossible this may seem at times, it is vital that you do! Things can get all too heavy and all too quickly if you let them. You can’t remember when you last properly slept. When you managed to have 10 minutes on your own when you mind wasn’t racing; worrying about something or thinking about what you should be doing. And you certainly feel you should not be sitting down on the sofa for a minute and enjoying a hot coffee, rather than hiding in the loo to get that much needed minute to yourself.
I am not one to talk, I struggle to enjoy things like I used too. I am on constant alert. I really cannot remember the last time I came close to a good night sleep. In-between the worrying, the thinking and my two children who either won’t or can’t sleep. Topped off with my body being filled to its limit with coffee so that I can try and keep functioning during the day. I know that I all to easily forget to smile and laugh. However I have started to try and make myself think about the positives; trying to find one in every situation. I am trying to find the funny side to life again. If you look into my little world at times it really is quite funny and most certainly a little crazy. The problem is that when it is happening to you, all day, every day, its very easy to stop seeing the funny side. BUT as long as you still have it in you to laugh at yourself and see see quite how crazy things have become you will begin to feel better!
So I thought I would share the ‘positives’ and ‘funny moments’ I have had this week. You will need to bare with me here, I am pretty tired and still a little dazed from falling down the stairs so my sense of humour might be a little wonky….
Routine is so important; never dare stray from the routine. Its far too risky and dangerous. I have made the same pack lunch for the past 225 days, and counting. I know each week what I need to get in, I never need to think what C might like today, I already know. Ham sandwich, white bread, cut into 4 squares with no crusts. A handful of salt & vinegar crisps; made ONLY by Walkers. An apple juice, a Petits Filous and a home-made biscuit. BOOM that is lunch done, and I have not even had a coffee yet.
We have three different variations of tea. I have either done chicken nuggets, bread, cheese and dip dip (tomato ketchup). Sausages, bread, cheese and dip dip or home-made pizza with dip dip, everyday for the last 3 years. Seriously you would think that maybe something different for a change would be nice but NO. No two foods must touch on the plate. Dip dip must be well away from everything, although everything will be covered in the stuff any second now. I HATE dip dip; it smells horrid, it is horrid. But I now have packets in my handbag and in my car. The thought of running out in my head must be more scary, than the thought of dip dip exploring over the entire contents of my handbag. If this ever happened the whole handbag and everything inside would be in the bin before you could count to 10!
Every Saturday we go swimming and then go to Granny and Grandpa’s for lunch. Even if they are not there, we still have to go! We have the same lunch, sausage rolls (Hot dogs) with dip dip every time. Seriously we really do have to go when they aren’t there. Crazy you see, but kind of funny….
C is a wanderer. He will happily let himself out of the house and disappear. He also would climb out of any window, irrelevant on which floor he happened to be on. This means every window in our house have super window locks. You can open them but not even a small child could get their head through the gap. This results in our house being extremely secure. I’m fairly sure more secure than many prisons.
We never have an issue on non uniform days. No panic about what to wear and C trying to fit in with his friends. He will not go in home clothes. He never normally does, so why today… Thankfully as I can’t remember my name most days, I am never going to be the ‘bad mother’ who forget and sent their child to school with uniform on when all their friends were in jeans and T-shirts. Quite the opposite, the one time I sent him in home clothes he wouldn’t get out the car and then it took his teacher an hour to talk him into the classroom.
We save a fortune on holidays. I once dreamed about going on amazing family holidays. Saving up to take both boys to Disneyland or Legoland. But we are lucky if we get to go and stay with the in-laws for 5 days. We will save a fortune on holidays. My dream holiday now is a night away with T without the boys. Chance would be a fine thing but one can still dream….
Family outings aren’t common. The planning and stress to go out for the day is extreme. And then when we get there, we have about an hour maybe two if we are lucky and then have to go. Leaving a trail of destruction behind us. So again we are saving a small fortune. Whoop whoop – I told you every cloud has a silver lining. C is as happy being outside in the middle of nowhere, surrounded by no one, climbing a tree or a rock. Pretty stressful for me to watch but he could not be happier.
C has a lot of sensory issues. He is not a fan of wearing clothes. As the stress levels raise so the clothes come off. Not only does this mean I have a warning that things need to calm down, demands massively reduced and he needs to be left on his own But also during the holidays and weekends unlike most mothers who’s loads of washing increases, mine massively decreases! We also save a fortune in coats. When C was little we used to have massive battles putting coats on him. T would go crazy at him. We could quite easily ruin an outing before we even got out the car over a coat. But C runs hot. He cannot control his temperature like most people. The hotter he gets, the harder it is for him to control himself. So unless it is raining or he wants a coat, we just don’t bother. He doesn’t need one so why put one on.
C truly hates change. He finds this extremely hard. I once made the mistake of moving the kettle in the kitchen, and when he realised he had a massive meltdown. A lot of people find this hard to believe but small things can cause massive problems We need new carpets in our house. I hate our carpets. But we can’t change them because C will go mad. I can put a kettle back, I can’t and will not put old carpets back. So as much as I hate them, and seriously want to change them, I have a very good reason not to. This makes T very happy because, do you know how much new carpets cost?!
T and I never go out. I honestly think we have been out 3 times together in the last 5 years. The main issue being is, how many people would you trust to look after a child who is as unpredictable as C? Very few, if any! If he has a meltdown when we are not about, I am not sure anyone else could cope. He does not sleep well, he is very prone to night terrors and he is a wander. So this does mean finding a babysitter is a little tricky. We had a wedding during the summer that T and I both really wanted to go to together. My mother in-law drove 7 hours to come and babysit for us! It also means that people have to come to us for supper. T and I can always have a drink, and boy do I need a glass of wine by 6pm. There is never any pressure on T to take me out for dinner which is a good job, because he would be rubbish at remembering and I would get mad at him. Us not being able to go out, saves endless arguments.
I am fairly sure between T and myself we almost single handedly keep coffee growers in business. As with many parents of autistic children we consume far to much coffee than is healthy but without it I would be even more rubbish than I already am. I think we also do a pretty good job at supporting the wine industry.
I have come to realise that C comes out with the funniest things. He watches a lot of documentary about Dinosaurs. So he has developed a fairly adult vocabulary. This means that he uses what he has learnt but when it comes out of a 5 years old’s month, it can be extremely funny. I got told the other day “Mummy you are so full of hot air that you might just take off”. I had to leave the room because I was laughing so much. Last weekend we spent 2 hours outside with our real camera taking photos of a T-Rex, a Brachiosaurus and a Diplodocus. I had to go a different way to school for two weeks because it was the only way we could see dinosaurs as they were migrating.
I have worried a lot about G. I have often worried if he also has ASD. But I think it is all leant behaviour. He at times does not have the best role model. When my 2 year old tells say “go away mummy, I need my space”. Then cries 30 seconds later because you have left the room. You have to laugh.
I have discovered that I am a much stronger person than I ever thought possible. I have come to realise how important the small things are and that people worry about the stupidest things. I certainly know who my friends are and although I might not see them often, I know how important they are. Life is short, unpredictable and you never know what is around the corner. But however shit life seems to get at times, there is always someone else having a rougher time than you.
So you see, if you look hard you can always find a positive, even if only small. And I promise you that having a laugh about stuff will always makes you feel a little better. So have a look and see what positives have happened today – I bet you’ll find at least one!