First born son is turning 13 this month.

My 5lb 7oz prem surviving twin is going to be a teen.

Born by emergency c-section, 5-10 minutes away from not having the opportunity to grow up.

Always walking to his own tune.

Diagnosed as moderately Autistic and always needing support to function in this world. We were told he would probably never grow to be an independant adult. Those words haunting me again and again. I remember so clearly sitting on the floor of the Assessment Teams office as we were told and wondering what kind of life my son would have.

I remember the tears I cried over and over, again and again, as I worried about who would love him and see the beauty that he carried. I worried about who would see past the label, the quirks and see the precious miracle I saw.

I raged when seeing people wanting a cure, which would in effect CHANGE part of who my son is, yet at the same time wishing he could just be an average kid. I felt guilt when I read about people’s opinions that it was abusive parenting that caused these traumas in the epidemic that was sweeping our world called Autism. I read and absorbed all I could in the attempt to understand my son’s world and thinking, looking for ways that would help him intergrate into our world.

Whilst I wanted to let him be him, I also knew that he had to learn about this world that was so foreign and frightening to him. I created an Autistic world in our home and learned to think Autistically in order to give him the calm and peace he so desparately looked for.

I indulged him his obsessions and stims, all things the professionals said not to do. I spoke to a lad on the Spectrum who said stims were calming and if I didn’t allow them, one of two things would happen: A new stim would emerge or the frustration of not stimming could cause him to self harm.

I never forced him to make eye contact. The same lad on the Spectrum told me the eyes were scary for him and the blacks of the eyes looked like some scary void. So I encouraged looking at the nose or shoulder and we would practice that.

Order, strict order, nothing changing. Robotic routine, same thing, different day. The consequences if we didn’t follow this would be a 45 minute meltdown that had me holding him tight, restraining his hands, so he couldn’t savagely claw at his face. A behaviour that showed the fear and confusion of a wee lad whose world would would collapse if he was overwhelmed.

Slowly introducing change, and allowing time for the change to be processed. I took down all the clocks so the lad didn’t know that we had morning tea at 10.05am on a particular day and not 10am as scheduled. In fact, the schedule had no time frames to eliminate the torturous decision of whether to not finish something in order to eat which would leave something unfinished (unthinkable) or finish the project and eat later than planned. (unthinkable)

While other kids were learning the capital of France, I was teaching my son about feelings and emotions and what they were. While other kids were on field trips to Museums, my son was learning about society rules, which, by the way, are really weird.  Even to this NT mother.

I slowly developed a network of friends with similar children. Birds of a feather and all that. I slowly developed a thick skin to shut out the critics who would voice their opinions so loudly.

My pre-teen, the boy they said would never grow up to be an independant adult can cook a meal, clean dishes, do washing, peg it out, bring it in, iron (YES, I am raising a man who will iron !!!) He knows what my face looks like when it is sad or angry and will ask if I need a hug or if he can do something to help. He has performed on stage twice in Gang Show, working and being committed to countless hours of practice and shows. Acting out a script and knowing what is happening is comforting as opposed to the unscripted show of life. His obsession has moved onto music and he plays the piano for 3 hours at least a day. Music has order as does maths which he is very proficient at and is leaving me for dead (and I was quite the maths whizz, I can tell you)

He is polite, and yes, a little formal. He calls me Mother, not Mum or Mummy, “Mother”.

After all the years of worry, sleepless nights, tears and fears, I must say I can see he is going to be ok.

I showed my son this post before pushing ‘publish’. He does not remember most of what I have written, but loves my paragraph which says where he is now. He thinks it is an accurate description of him, and then went on to tell me that the word ‘robot’ come from the Czech word ‘robota’ which means forced labour. You all needed to know that.


1 Comment »

  1. God bless him and I hope he has a happy, happy birthday. I know he has a twin looking out for him that will always be a part of your lives. I hope this year as he becomes the young man of the house that he grows and changes in great ways you never imagined. 🙂

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