I gave a speech the other night

I gave a speech the other night. Learning for Life Autism Centre provides our Batsman's ABA therapy program and their director asked me to speak at a staff social night. They wanted me to try to give the (mostly young) staff team a glimpse of what it's like as a parent. A glimpse of the world where therapists come in and out of your home every day and work with your precious child in the most intense of therapy programs. There was a dad who spoke too. This is what I said.


"When I was asked to come along tonight and talk to you from the parent’s perspective, initially I was a bit unsure about what I could say that might be useful. And also I was terrified of boring you all to death! Being the mum of a child with autism, being the mum of a little boy in a Learning for Life program is kind of hard to explain to someone else, it’s hard to help anyone “get” what it’s like, unless they’ve been there.
Since the Batsman was diagnosed with autism almost a year ago, one of the things that has happened to me on a personal level is a sensation where it feels like my brain never, ever stops. And I mean never. Even when I am asleep, it’s still grinding. There’s not a whole lot of peace. I have to consciously work at it to slow it down, to breathe. The thoughts flow from all angles, from the tiny minutiae of domestic stuff with small children to the profound, deep thinking about my Batsman, my 18 month old Bowler and my family. So I thought that one way I could try to give you a picture is through a snapshot of “what’s in my brain” in a normal day, in a normal week, where you all come in and out of the lives of L4L families as therapists working with our children.
So here goes....
Is the bathroom clean? Must stock up on toilet paper.
Oh my goodness the house is a mess. Quick run around and pick up the food/toys/crap off the floor.
The Batsman seems a bit anxious this morning. I hope he’s ok.
How am I going to entertain toddler this morning while the Batsman has his session? Should go to the gym but I am so tired I feel like curling up on the couch.
Bowler, what’s that in your mouth? You don’t eat Lego.
I feel awful leaving him and I would love to be here more but it’s too hard to be in the therapy session and shepherd toddler around too.
We have no food in the fridge for lunch/dinner. Again.
I need to write those notes for the kinder teacher. Really want to help her to get to know him quickly, all those little quirks and things he can do that will help him settle in quickly.
I WILL stay awake tonight past 9pm and do some paperwork.
I hope the Batsman doesn’t have any meltdowns during the session today. It’s so hard to watch him struggle through being upset, knowing that he has to work through it and come out the other side. It’s hard to watch it when it’s tough for the therapists too.
Make sure he’s got sunscreen and a hat on.
I hope the therapists like working here. The consistency is so important for the Batsman.
I wish the Batsman would eat more good food. Note to self: if there is no crappy food in the cupboard, he can’t ask for it.
Oh no, the session finishes at 10:30. I thought it finished at 11:30. Quick. Drive home. Heart racing.
I’m so exhausted from running around and in and out of the car with toddler all day.
I must remember to talk to someone/anyone about ways to support the Batsman with anxious behaviour.
I might start looking at primary schools for the Batsman during the next few weeks....now there is a terrifying thought. Will they care for him as well as I do? As well as the therapy team do? Will they keep him safe?
My mobile is ringing again.
It’s the Captain’s mum’s birthday and I forgot to buy a present.....again. Second year in a row.
Bowler....please stop screeching at me. Lunch is coming.
I feel guilty about the disruption to Bowler’s day because of Batsman’s program but Learning for Life and autism is part of his world now too.
It’s so nice to be sitting in the gym cafe for a few minutes on my own. Remember to breathe. Finish your coffee.
I hope we can get through this toilet training stage with the Batsman without too much stress.
My phone is ringing. Who on earth is calling now? It’s the fifth phone call for the morning.
I must remember to change over the toys/materials in the program room so the therapists and the Batsman have new and interesting stuff to play with.
Would it be bad to have take-away for the second night this week?
Time to sort out those appointments with the OT/paediatrician/speech therapist. Is what the OT is doing really helping? Is it worth the big amount of money it costs?
I really need a break. If I get exhausted from our schedule, how must it be for the Batsman? Is it too much for him?
Would love to arrange to catch up with my friend Deb. But we can’t find a time that doesn’t clash with kinder, child care, therapy, meetings and appointments. Sigh.
I wish Bowler would sleep for 2 hours in the afternoon instead of 40 minutes.
Need to keep things calm today. The Batsman really picks up on my anxiety levels and it translates into how he manages himself.
Sometimes I wish we could just be a “normal” family with a “normal” schedule and just wake up in the morning and decide to go to the park or the zoo.
My beautiful big boy....so proud of him, he’s achieving so much.
Is he going to be ok in life? Really?
Oh god, the house is a mess!


So there you go. A snapshot. And that’s probably just the thoughts I’m really conscious of.
So what’s my message here. There isn’t one really. I just wanted to let you into my world a little. It’s a crazy life we “autism” parents lead. It can make you cry one minute and have your heart singing the next. These kids are so utterly amazing. Anything is possible. Keep doing what you do. You all do an amazing job with these kids. Keep building warm, good, working relationships with the families you work with. It will make the biggest difference to them if they know you “get it”, even just a little bit."

Image from We Heart It