Living with and letting go: A parent’s story on autism
21st November 2018
By Brendan Dunphy, BLD Communication
In this blog, we are delighted to provide a real-life story of a family and their trials, tribulations, successes, failures, emotional challenges and ultimately, an unrequited joy of raising an autistic child to adulthood.
In the beginning
Louise and her husband David brought three beautiful children into the world – Isabella (Bella) Andrew (Andy) and Jonathan (Jonty). All under the age of four, it became clear – early on – that Andy’s development – both intellectual and social – was very different to that of Bella and Jonty.
Andy was subsequently diagnosed with Autism – Moderate Intellectual Disability.
As part of our story, we have avoided putting labels or IQ quotients on what this diagnosis is or means, rather focus on the impact this diagnosis has meant for Andy and Andy’s family.
The early years
With three children under the age of four, family life is going to be busy, indeed chaotic. Adding to this was the challenge of Andy’s disability and the impact this was having on the family. Frequent meltdowns and fundamental communication challenges created chaos in the home and, as a result, limited social interaction for Andy as well as Jonty and Bella. Play dates, date nights and community outings were rare.
“We essentially had to retreat from society during this period,” says Louisa. “This had an enormous impact on all the family. It was made worse by Andy being in mainstream schooling, although at the time we didn’t realise the level of this impact.”
It became clear that Andy was actually regressing in mainstream education with systemic issues at multiple levels and after four attempts at four schools, it was clear it was not working.
“This was in Year 5 and we decided as a family that we would home-school Andy. This was not a decision we made lightly,” explains Louise. “I had to give up working which put us under enormous financial strain and we were unsure if it would be the right fit for Andy.”
As it turned out, it was the best decision the family made regarding Andy and his on-going development.
“At the beginning, it was sink or swim as I had to learn how to be a teacher,” explains Louise. “I wrote the learning programs for Andy myself and established a daily learning routine I hoped would keep Andy engaged and moving forward.”
Over the intervening years, Andy thrived in this more cloistered education environment. As important, family relationships improved and the community and indeed, the wider world began to open up for the family.
“The great thing about homeschooling was that I could immediately address Andy’s intellectual and emotional needs, whereas in mainstream education these were never addressed leaving him extremely troubled, frustrated and emotional – a veritable time bomb by the time he came home,” says Louise.
A young man
For seven years, Louise home schooled Andy and now at 17, he has, in Louise’s own words, achieved ‘huge developmental gains.’ Combined with additional support programs including Occupational Therapy (OT) and psychological support, Andy is now a young man keen for greater independence.
“The other key lesson we learned is that there are ‘phases of development,’” notes Louise. “There is also no seamless move from one phase to another and each throws up its own unique challenges. So just when you think you have established a pattern or behaviour that is consistent, another phase – generally more challenging and intense – presents itself and you need to re-invent your approach to meet the new needs!”
The family network has also proven itself as important as the homeschooling.
“The collective support of our family has had a massive impact on the success of Andy’s development. Many families, for many reasons, may not be able to offer the level of support needed for those with a disability,” explains Louise. “Andy has been blessed with siblings and parents that are not only supportive but proactive with his wants and needs. To me, this has been fundamental to his successful development.”
Now at the end of the secondary schooling phase, Louise has applied for and been successful in securing post-school funding via the NDIS. This funding now provides for a mentoring and caring program as well as ‘capacity building’ – both designed to help Andy integrate into the community.
These programs focus on developing key life skills from simple communication approaches and work experience, to resume development and more prosaic activities such as using public transport.
A time to move on
As a young man, Andy is now pushing the boundaries in regard to expanding his own place in the world.
“What has become (recently) apparent to us is Andy’s very clear insights into not only his capabilities and needs but his disability itself,” explains Louise. “We have found we now need to keep up with his rapidly expanding abilities and his sense of the world.”
Andy is also now following long-held and very specific areas of interest that he sees for his future.
“Andy still holds an interest in areas that, at least to us ‘neuro-typicals,’ may seem unrealistic – such as becoming a WWF World Championship wrestler! What is important, however, is his level of interest and with this, we can (hopefully) guide him to a place or role he is happy and engaged with,” explains Louise.
“What is really hard for the family is that our once little boy is seeking his own place in the world and while we are extremely proud of what he has achieved, we are also very sad that we do need to let him go – at least a little,” says Louise.
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