Additional Needs

Autism: Diagnosis Day

Posted by Zowie Kaye on 19th January 2016 Additional Needs, Advice & Support, Disabilities

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My husband chose a pre prepared sandwich, very average and I ordered a latte.

My 4 year old son Cameron never ate out anywhere - he barely ate at home.

I was meticulously prepared with, “red crisps”, and, “green juice”; maybe today he will try the yogurt that we have been working on for the past ten days, maybe without a meltdown.

Our return time fast approached and we made our way back to that colourful waiting room, I always think how much more of an effort they make in the children’s departments compared to everywhere else in the hospital.

The wonderful smiley Doctor came and called us through whilst instructing a nurse to take my son to play next door, “Don’t worry,” he reassured, “He will be fine they have trains”.

I remembered the salmon coloured curtains and the teal plastic covered chairs as we were invited to join the group of professionals.

Their chairs set out in a semi circle, but still had a board meeting feel about them.

“Mr & Mrs Kaye, thank you for taking the time today for us to complete the ADOS assessment. We can confirm that Cameron score places him on the autistic spectrum.”

I don’t recall much of what was said following that, something about follow up appointments, indications that help will be put in place...SUPPORT…any questions?

• You see at that moment the following happened; I entered the initial stages on the grief cycle -
• LOSS
• SHOCK
• DENIAL

Even though as a pragmatist, this diagnosis was exactly what I needed to go forward, to learn, to grow; to get to the final grief cycle stage…acceptance.

12 months on from D Day…

“He’s had a wee in the toilet, he just went by himself!!”

I was calling EVERYONE to share this news, sending pictures; I mean really who sends pictures of poo to their friends/relatives – any autism parent!!

I could have burst with pride at the fact that, at age 5, he is now toilet trained!!

Yes it took us much longer than a typical child but you see this is not just a transition from nappy to toilet.

For us, as a family, this is no longer a worry that I have to frantically get in touch with someone to make their way to school, to change his soiled nappy because I’m stuck in a meeting in work. I was so pleased cancelling the incontinence team referral.

That he can now go to the toilet as other children in his class do.

One less thing that makes him stand out for the wrong reasons.

24 months on from D Day…

Cameron is a bright child with an ability to adapt; loving, kind, well mannered and comical but does struggle in social situations and can be stubborn!

This was the most prominent sentence of Cameron’s school report.

“He gets his stubbornness from his Dad.”

I piped up whilst looking at my husband, we all laughed.

Yes!!!

My autistic child is coping in mainstream school, they are fully able and managing his needs exceptionally well.

The statement/EHC document is in now in place along with his 20 hours one-to-one support!

Present day…

Cameron is much more able to work independently, but still has a long way to go.

He is polite, loving and likeable.

This was stated in the most recent school report at the end of year 2:

"He excels in technology and the sciences. Last year he was below the national average and his effort minimal."

Now he is working at the expected national average and his effort is exceptional!

My baby is trying.

So you see although I started this blog post with the intricate details of the diagnosis day; which are there because of the pain that is still etched in my mind and heart, we made it past those final grief stages though – optimism, acceptance…... hope!

We will never forget but we will learn to cope and will never stop looking forward and beyond.