As most parents of a child with Autism would be aware, every day is always a surprise and you never know what you are going to get. Every morning I hear Jesse’s little feet pitter patter down the hallway towards my room and I snuggle further down into my bed. I savour the last few moments of peace and hope like hell that it will be a good morning.
When Jesse was little, before the constant chatter had begun, he used to put the Weetbix box beside my bed and quietly wait for me to roll and step on it. The bottle of milk would be set up beside it and he would wait, staring at me, holding up his spoon. Today its a completely different story, before I have even opened my eyes, Jesse will jump straight into reprimanding me for things like;
- Lawrence his teddy fell out of bed during the night and why didn’t I save him
- Daddy didn’t let him finish watching his show from the night before
- I hadn’t bought him the toy he saw on TV 2 months earlier
- I wasn’t already awake getting his breakfast
- Why wasn’t it Christmas
- Why wasn’t it his birthday
- Why had I slept with Daddy and not him – and the list goes on but you get the picture.
Another way he likes to wake me up is by scripting. He jumps straight into character and recites dialogue and sound effects, demanding that I sit up and watch. This is a talent of Jesse’s, he can re-enact most scenes of his favourite movies or shows almost perfectly and it can be quite entertaining but never at 6am. And then there are those rare special mornings where my little boy will softly say “good morning mummy”, snuggle in next to me and tell me it’s time to get up.
Jesse has an amazing memory and never forgets a thing; his little mind fascinates us all the time. He can have moments of brilliant clarity where he will construct a beautiful, thoughtful sentence that is relevant to the situation. And, other times, not even putting my brain into ‘asd mode’ can help me understand what he is trying to communicate. You want so badly to help them when they struggle, you look into their little face and know that they know what they are trying to say but they just can’t get it out. In our house this situation can end up being a panicked game of Charades/Pictionary, where I offer suggestions and actions to help Jesse, knowing that I have a limited amount of time before the ‘meltdown’.
These moments are frustrating and intense for both parent and child and a calm situation can easily spin out of control. I have learnt the importance of staying cool and not showing too much emotion, no matter how late, how busy or how tired I am. With Jesse I try to follow these simple principles;
- Squat down and get on his level
- Try to engage and keep eye his contact
- Talk slowly and softly
- Use short, simple language, nothing that can have a double meaning
- Avoid all negative words or instructions
- Ask ‘lead in’ questions in relation to whatever the situation is, and if possible relate it back to his interests
- And never interrupt or cut him off, I allow him time to respond.
Recently Jesse has started to identify these moments of frustration when communicating and he starts to instigate some of the above principles on his own. Not all the time, and definitely not in a heightened sensory environment like school or out in public. But at home you can see his little brain try to figure out a different pathway to get his point across. I’m extremely proud of him when he does this and it just melts my heart.
I understand communication and expression will always be something that Jesse will struggle with and be working on. Unlike neurotypical kids, these things just don’t come naturally or easily to Jesse which is hard for a parent to watch. Random comments and scripting is an everyday occurrence with Jesse and is usually just confusing but when he gets the timing right it can be pure comic gold. For example, we were travelling along in the car one day and we were nearing home. It was completely quiet and Jesse yells out “Carpets back, carpets back, carpets back!” I turned to Kerry and we looked at each other for a few seconds and I said “Geez babe, we shouldn’t have tiled the new house – carpets back”. We both laughed so hard we were crying, much to Jesse’s disgust. Jess doesn’t compute humour so he interprets our laughing as mocking which is a whole other issue we are working on. It wasn’t until days later that it all made sense. Jesse had been watching a movie about a dog that had run away and returned home … his name was Carper.
Kerry and I still like to remind each other that carpets back and have a giggle. We have learnt to embrace the funny moments and enjoy it for what it is. Pick your battles and don’t sweat the small stuff because we have more than our fair share to worry about parenting a child with autism.