My Experience with Autism
Close your eyes for a moment.
Actually, open them again, silly me, you won’t be able to read!
Anxiety, pressure, stress, panic.
Now imagine being so overwhelmed that the only thing that calms you down is humming with your mouth for hours- feeling the sensation of tingles across your tongue and the sound of the hum blocking out the outside terror that you are experiencing.
Imagine not being able to tell anyone how you are feeling, what you want or need, or to ask a simple question. Not being able to connect the message from your brain to go to your mouth to form words.
Imagine the thought of someone coming close to you, wanting to hug you; invading your personal space, touching you to be like razor blades been run across your body.
This is what I imagine Autism is for my son Ethan. I know this. Because he can tell me now. But for many, many years Ethan did not speak, grunted at best, screamed and had meltdowns for up to 8 hours a day and bashed his head against the wall to block out any human contact of communication.
He said “mum” when he was 4 years old. That took months and months to teach him that word.
Ethan will be turning 12 this year. I was 20 years old when I had him. I was a baby having a baby. We have gone through so much together – at times, I don’t know how I/we did it. There is no manual to talk you through how to deal with Autism. Each person with Autism is so different and the spectrum scale can be huge. And the early years; f*** me, the early years were soo hard. I mean, heartbreaking, bawl your eyes out, have not f***ing idea what I’m doing hard.
For both of us.
I was shunned upon and stared at when I had to deal with a meltdown in the middle of a shopping centre.
I was told I was a bad mother and I had no control over my kid
I was made out to be an idiot when I went to my local GP, then another one asking “what’s wrong with my baby”, until I finally received a diagnosis when Ethan was 2 years old.
There is so much unknown that I worry about for Ethan.
Will he be able to get a job one day?
Form lasting relationships?
I had a meeting with Ethan’s school regarding his funding for his transition into high school next year – for a Special Education High School. WHEN DID THAT HAPPEN??
We talked funding, psychological assessment reports; schooling needs, safety needs, extra assistance etc…
And I came home yesterday after work and that meeting and had a “blurt” session to Steve about it. My concern and fears of the unknown for the future overwhelmed me. All we want is the best for our kids. I want the best for Ethan.
There are still daily struggles, obsessions, routine issues, ticks, sensory problems that we have to deal with as a family But I look at my boy, on the edge of entering his teen years and I am AMAZED.
He is AMAZING.
My boy, this beautiful, gentle soul, with all of his challenges that he has to deal with on a minute basis every single day to function in the world is a f***ing superstar.
And I made him.