It’s 7pm and both my boys are in bed because I need it to be bedtime. I know it’s pretty early and this is earlier than they would normally be in bed but for tonight I need it to be bedtime. One of my boys is watching tv in bed and the other is watching his tablet – I’m very aware I’m probably breaking every super nanny rule of a good bedtime routine but tonight I don’t care about any rules I just need them to be in bed!
I’ve heard “mum” being shouted, screamed, whispered about 1 million times today and the demands keep coming. The demands never really end; I’m up 3 or 4 times in the night to do position changes, 12am, 2am, 3.30am, 5am, 6am. Has my day started? Did the night before ever end? And so there’s only ever a few hours break until someone needs me again. “Mum I need a drink”, “mum I need the toilet”, “mum where’s my dot-to-dot book”, “mum can you help me”, “mum I’m not comfortable”, “mum write me sums”, “mum my legs need moved”, “mum where’s my car?”, “mum mum MUM!!!” They rely on me for so much – one needs physical help for mostly everything and the other demands so much mentally.
I’ve spent all day sorting food & feeds; one of my boys has a tummy button so is mainly tube fed and these feeds need connected on & off throughout the day & night to ensure he’s getting the correct amount of calories and nutrition, the other needs major encouragement and negotiation to sit down at the table and eat “yes I know that sauce is a deeper colour but it’s the same”, “the pasta isn’t bigger it’s just the same”, “let’s use the timer”, “a few more spoonfuls please”, “yes I know you wish it was just fish fingers”. I need to cook my own dinner but there’s a car race going on around my bunker; moving any of these cars or demanding that the race is finished will result in a meltdown – I do not have the energy to deal with a meltdown so I will work in between these strategically placed cars. The race gets louder and louder, the wheels running over the work top in a repetitive motion. I can no longer hear my music playing, I can’t hear anything.
Autism means facts have been thrown at me all day: “mum did you know it’s 37 degrees in Egypt right now”, “the time in Australia right now is…”, planet Jupiter is this big…”, “this movie is 102 minutes long”, “2 years ago today this happened”………..
Sma means I have a son who is a master at communicating – it’s the only way he can get what he needs or wants so his little voice chatters all day “mummy can I talk”, “mummy I’ve got something to say”, “mummy I need to tell you something”.
We went out for a bit today and going outside of the house is like a marathon operation. Just getting the boys ready and into the car is exhausting – lots of lifting then planning about where we’re going, what we’re going to do. Then there’s the bags of stuff we need and wheelchair to sort. It’s hard work physically pushing a wheelchair around and transferring to the car. We all need a rest by the time we get home.
I love my two boys, I love their differences, I love their quirks, I love being their mummy – I wouldn’t want anyone else running around after them – it’s my job and I love it!! But right now I’m tired and I need them to be in bed so I can breathe for a while, so I can hear myself think, so I can have a rest. If there’s any other parents in this position right now – I’m with you – here’s to a few hours of quiet before it all starts up again in our different kind of normal.