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.
January 24, 2015 at 1:25 pm
If anybody is capable of seeing this particular journey through its you guys! Not sure how much help well be but we are here for the ride too. Ox
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January 25, 2015 at 1:36 am
Great post, and yes, our children would be better off just being uniquely themselves without labeling or name calling. Can’t begin to imagine what you have really been through.
Being a nutrition and health coach, I cannot help wondering if you have adjusted Jenna’s diet at all? Some foods (or non foods) and additives are just poison to the body. Just wondering…..
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January 25, 2015 at 2:24 am
No diets tried, we have enough trouble
At this stage to get our princess just eating any
type of food.
We are exploring speachies and OT’s this
Coming month as a starting point
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January 25, 2015 at 3:06 am
Wonderful post Jeramy! Jenna is a unique and awesome kid! You guys are doing great!
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January 25, 2015 at 9:15 am
Hello a friend sent me this link to your page. We also have a princess on the spectrum. She is 5 years old. Like u when we got diagnosis I asked my self all the same questions and came to the same answer. I have also started writing about our journey http://www.facebook.com/autismandtheprincess. If you would like to follow our journey please have a look. We do OT speech and see a psychologist and found our OT and psychologist to be the best help her OT for her and the psychologist is my go to person to help me through the journey. Good luck with everything your daughter looks adorable.
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