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My ASD Princess

A family helping a girl explore her world through the lens of autism

Month

January 2015

Routine – A blessed thing

First day back at school for our princess, for that matter 3/4 of the tribe. Although this year has proven a bit trickier, more thought-out and planned the day itself was uneventful. The day started for Jenna at 5am and she was dressed and packed by 5:30am, breakfast at 6am and then the next 2 hours was a painfully long countdown until the we left for school. There was one spanner in the works, Miss 12 started her first day a high school. Not one to share the spotlight Jenna was a little puzzled why our normal 30 second drive to school (those green friendly friends out there I’m sorry, it’s just easier to drive) had to be detoured 5km and 15 mins to wave good-bye and comfort some “high school nerves.”

Miss 12 ready for high school

So the 8am drop of deadline passed, (mind you still 50mins early for school)  I tried to explain that it was not going to be met, and the nerves, brotherly love was not helping her pass the time.

This was the 6am Instagram post by my “big grade 5” princess .

But we made it to school, found her brothers classroom, then Jen’s.  Then came what I was waiting for, a nervous but ‘cool’ wave good-by gave me the cue to get out of there. The hard work paid off…. Jenna’s teacher already knew her name, triggers already aware because of a impromptu meeting days before and a ‘magic’ letter handed to school to gain extra supports. 3pm came around quickly and I got stuck at the traffic lights (2mins 15seconds late) almost , almost done…… Quick diversion to her special interest and back in track, quick chat and change clothes x2 and headed to gymnastics Jenna’s world has gone back to some kind of normality. Just to prove it, it’s 8:15pm and the first time in 6weeks I have a beverage in hand, TV show on and a sleeping princess. Routine, it’s true bliss.

My Princess (insert label) ASD + ADHD girl

This week we received a diagnosis of Autism for our princess. Last year it was ADHD, the year before ear problems and before this hearing issues.

This has been a 5 year journey of experimentation, failings, labels, and stereotypical comments. She’s  “naughty , loud, weird” , we were constantly being told by school “you need to get her checked out” “there is something wrong with her” “have you considered testing?”

Glasses prescribed, grommets inserted, hearing tested, IQ testing, and behavioural optometrist sort for advice. Each specialist sending detailed reports on how to help her.

But still the label “naughty, misfit, failure, loud.”  were how people viewed her.

We just know her as Jenna.

This week as I sat and pondered what this diagnosis means to us as a family and to me as a dad, I was at a loss.

Getting it wrong for the past 5 years I asked myself these questions:

  • Did that lesson my abilities as a Dad?
  • I missed the signs for Jen, what else have I missed?
  • What did I do wrong?
  • Why did I miss all the signals?

I soon got over myself and came to the understanding that the girl I know as Jenna is still the girl I adore.

As I began the road of discovery I began asking myself and for that matter anyone who would listen these questions:

  •  Where does she fit on the spectrum?
  • What have I missed?
  • What treatment is needed?
  • What do I need to change?
  • Have I made the problem worse?
  • How do I shut up the skeptics?
  • How do I embrace her uniqueness?
  • Does she need “the label”?

Putting all the rules, diagnosis, stigma, and people’s comment aside, I can come to a conclusion.

Jenna is Jenna and Jenna can be Jenna and no label will change that I love my Jenna.

She is unique, different and honesty will find it difficult to fit into cultural norms for a very long time.

That diagnosis of ASD can’t change.

I can’t change that my daughter can’t read social cues correctly.

I can’t change that creating friends will continue to be a challenge for her.

I can’t even change that she is the most literal person I have ever met.

But…….

Jenna is Jenna and Jenna can be Jenna and no label will change that I love my Jenna.

If I could make a wish, dream big for Jenna it would be very simple; I want people to value her, laugh with her, and embrace her uniqueness.

Just like every one of my 4 children they have the potential for greatness. A potential to change the world. I just pray that like myself I see the greatness that is my 9-year-old ASD kid, as we know her at home Jenna.

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