Life first, then happiness

22 November 2016 – TWO YEARS AGO I knew nothing about autism spectrum disorder and then my son Felix turned 14 and the whole world changed for us as a family.

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By Carleen Gilbert

He was depressed, unfriendly and unmotivated.

He couldn’t get out of bed and couldn’t do his school work. Shutdowns daily and meltdowns too were becoming a problem.

Both him and I looked at ourselves and did internet research which pointed us to a strong suspicion of Asperger syndrome.

I self-referred to the Bay of Plenty Child and Adolescent Mental Health Service and the intake nurse asked immediately if we’d heard of Asperger’s.

A diagnosis and pills came next but neither helped and he got to breaking point and we both were very frightened.

There seemed to be no practical help.

I had to change my perspective entirely on what was right for my child.

I took him out of school at 15 and stopped all pressure and allowed him time to recover but not hibernate in his room and gave him small bite-sized programmes of activities.

My priorities are now life first, then happiness and mainstream education comes a long way down the list.

By sheer chance, a small group of Tauranga people were looking at forming a social support group for atypical kids. I heard about this through the wonderful Dorothy at Asperger’s Connections in Tauranga.

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MOCKING BIRD GET TOGETHER: L-r Back row: Alex Berkett, Robyn McLeod, Ella McLeod, Sophie Turner, Bridget Tippett, Carleen Gilbert, Felix Fowler, Sheila Tippett. Front row: Leanne Tschumy, Lochie Tschumy, Hannah Fairweather, Ezra Fairweather, Ashleigh Poad, Malachi Turner and Conner McLeod. Photo: Alisha Taylor Photography, Tauranga.

I went to the initial meeting at Parent to Parent Tauranga which was standing room only and both Felix and myself left knowing this was for us. We were desperate to be involved.

We formed Mockingbird in February 2016.

It is now an incorporated society of which I am the president and I am there to help on most of the three days a week that we are open from 9.30am to 2.30pm.

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MOTHER AND SON: Carleen Gilbert and Felix Fowler.

Even holidays we still open with reduced times because no one wants to leave.

Our approach acknowledges Autism Spectrum Disorder (ASD), Tourette’s, Obsessive Compulsive Disorder (OCD), Attention deficit hyperactivity disorder (ADHD) and other atypical kids as differently-abled not disabled.

We are a judgement-free zone in a cosy home-like environment.

Grab a sofa and chill.

We cater to sensory needs like light, sound and space. We are totally relaxed about time and food.

No bells ring here, no lines, no exams, no bullies.

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HANDS ON: Lochie Tschumy gets to grips with telephone wiring. Photo: Alisha Taylor Photography, Tauranga.

We minimise stress to enable kids to get below the hyper-arousal line which allows them to be relaxed as their true selves.

 

Humour and kindness with understanding and compassion is how we work.

These kids who have seemed difficult and oppositional in the mainstream setting are now a delightful and caring bunch of kids who just hum together.

Adults with Asperger’s are a valuable resource for our kids.

Amazing mentors and role models.

We have Jason Edgecombe and behavioural consultant, Ross Barker, as part of our team.

Their input has been a big part of us getting it right.

Ross has volunteered help with layout and day to day dynamics of our group. His intuitive knowledge is widely respected in our community and many parents have come to him after a long and unsuccessful journey trying to help their kids.

My son and I have been going to Mockingbird Inc since February and he is a different kid.

Much calmer and I see smiles now.

He is able to express himself far more and understand his responses to situations clearly.

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PET RAT: Sophie Turner

He comes out of his room and I get cuddles again.

For me it has meant new life-long friendships and support from other people who totally get it.

Some parents asked me for private mentoring for their daughters. I had seen the work Jason Edgecombe has done with his Dungeons and Dragons programme, which my son goes to.

I decided there was also a need for a separate teen girls group. A place where they could make friends and feel safe to talk about their personal thoughts and feelings. Along the way I would include some chats and activities such as grooming, friendships, body image, safety and other topics parents suggested.

This has become a small business for myself which I can run from home and sometimes kids just take it better from someone else.

It might seem high hopes but my dream for the future is to see these kids right through to adulthood and a comfortable and stress-free retirement.

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BOYS’ TIME: Ashleigh Poad, Ezra Fairweather, Malachi Turner and Conner McLeod.

The other families and myself are working towards the goal of having a co-op, community place where young and old can perhaps share training, work and sustainable living.

Often anxieties make full time employment difficult for us and therefore money and housing is often an issue.

As a group we are now looking at leasing a property in Tauranga to get this going.

Our chances may be slim but we have to try and make this happen.
It is my goal for my son to be happy, have a safe community and a reason to get out of bed long after I’m gone.

If he can help some other people as well to save suffering and hardship, then I will feel I have done my job.

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GIRLS’ FUN: Ella McLeod, Sophie Turner and Bridget Tippett. Photos by Alisha Taylor Photography, Tauranga.

This article was first published in Altogether Autism Journal Issue 4, November 2016 read the latest edition.