In this month that is Autism Awareness month I share a poem that captures some of the journey that is Autism.
Mum, what will I eat, why are the cornflakes that colour,
I don’t like how you looked at me and do you know the name of that fella,
Percy is green Thomas the Tank engine is blue,
And what is the drivers name Mum, do you know who?
The traffic lights change to green and the arrow stays red,
Mum, I don’t like you and don’t like my bed,
Get lost Mum and go away he says to Jack,
I try to be grateful and not focus on lack…
He then screams at the dog,
As I hurry to leave for my jog,
Looking for feathers is always a sign for sure,
It helps give me strength to walk back through that door.
Because then I will have questions fired at me one after the other,
I am supposed to know all the answers, because I am his Mother.
Be grateful he talks even if nonstop about all the same things,
You think it would be a relief when the phone rings,
It could be a client, maybe some work,
As I talk on the phone he calls me a jerk,
So I walk around pretending it is all good,
How do I explain this and it’s not like I should.
So Thomas let’s do something, did you look at your chart,
Mum, why do boys laugh at me when I do a fart,
Oh Thomas I don’t know now let’s go do something,
And then some relief when he starts to sing..
And then Mum, why does my head hurt
And I really hate this new itchy shirt,
My armpits are sweaty and smelly,
And my new teachers name is Mr Kelly.
Mum, my dad died and it makes me feel sad,
And why do you make me say naughty things and be bad
How do I do that Thomas, please tell me,
So I can help you to feel happy and free.
Oh, I don’t know and just shut up Mum,
And what does it mean, when they tell you, that you are dumb.
I don’t want to go to a new school I will miss Petrie State,
It is ok Thomas you will get used to it and make a new mate.
Fuck off Mummy,it is not OK.. you made me say that,
Perhaps it was the way I said it or the way that I sat.
I don’t know why I throw things, I don’t know why Mum,
And now it is itchy can you please scratch my bum
Oh some of it is simply behaviour, I do get that stat
When dealing with grief I let things slip, no doubt about that
And he is not trying to mess with my head and my heart
It is grief, language, communication and sensory issues, just for a start…
So to all those families that live with Autism,
Those families that deal with judgement and criticism,
Know for sure that you are not alone on this road,
There are people that can support you as you carry the load,
The gifts on the journey will be embraced,
And we will find them after each new challenged is faced!
Flashback… you are allowed to find the joy and laughter in the journey!
Mum, why does Jack wear a hair net at Domino’s? To keep the hair out of the food Thomas. And I walked into then kitchen and saw Thomas preparing his breakfast!!
5 years ago and we were in the midst of broken walls and windows and bad behaviour… we had a chat about what good behaviour looked like and the rewards and consequences and then he typed this and I knew something was being processed in that amazing, full, confused mind of his… and that his heart was feeling and knowing through the grief, confusion and uncertainty …. you just have to hang on to any hope that comes along… and sometimes it is typed beautifully like this!!
He amazed me this on this day and I chose to celebrate progress.
In true Thomas style he went and bought his cake, made, decorated it and bought his candles for it… he bought his birthday balloons too and we celebrated with him.
If you had told me when Tom was 2 or 3 or 9 that Thomas would be achieving what he is today at 17 I would have had a lot of trouble believing it… but here he is doing so much more than I could have imagined… so if you are at the beginning of the journey that is Autism, please know there is hope!
And of course the irony is not lost on me that Thomas’s birthday coincides with Autism Awareness Day!
And I am not sure what he has done to that bit of hair in the front !
Thomas needed to reschedule his work this week so he could go to school for the last day of the term so I said I would ring and sort it out, well before I could sort it out I get a phone call and he said this…
“Well Mum, I just want you to know that I have already rang the number for the man at Epic and told him that I can not work on Thursday… because you see I can do these things for myself now because I am learning to be an adult!”
And he hung up the phone and that was that!
Winning as he progresses to independence!
Well I had put it off and today we had to really get started…so first official driving lesson… and the reason I went as well was not just to make sure I was saying the right things to him… because you see we know with Autism, what they hear they remember and remember and remember, so I need to be saying the right thing…. but I also go because I need to make sure he understands what is being asked of him… because language is Thomas’s challenge and too much language and too many words all at once is overwhelming…
So, as she said, “Use the joy stick to adjust the mirrors’, I say… ‘Thomas that is your joystick there… as I point to it’… and when she says, ‘You put that eraser stuck there on the dashboard on the white line’… ‘I say, that is the blue rubber there Thomas stuck to the dashboard in front of you’… and then as she says, ‘Thomas you need to use your indicator now’… I say, ‘Thomas that is your blinker’… Oh ok, I know… and then she says, ‘Just let your foot hover over the brake’… I say, “Thomas just put your foot over the break without touching it’…
And it went on…
And she was fabulous and none of these observations have anything to do with her and her style because she really did an amazing job… these are simply the observations have how Autism can present and how difficult language is and how as parents we have to be so aware of our kids and how they communicate with others and in the world…
And now I drink scotch!
And yes he did a great job despite of how much their was to process and think about and to actual have to drive through traffic lights and not stop and observe, well that was big in itself!
And when Debbie told him he did a good job he said, ‘Yes, well my Mum did tell me I will be a good driver one day!’