The Story so far!

 

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2014 Rothesay Castle

 

Inspired by Autism bio.

My name is Duncan F MacGillivray and I am an autism parent living in Dunoon with my wife, three children and Bailey our pup. My middle son Andy is 10 years old and was diagnosed with childhood autism and a globalised developmental delay when he was 3 years old. He is a handsome, healthy, smart and loving child who has many classic autism traits. Andy is non verbal and has social difficulties relating to others at times. He has ridged and repetitive behaviours and can struggle with changes to routine. Andy has a complex sensory profile which means that he can have difficulties processing sensory input like bright lights, tastes, textures, hot and cold etc. He displays sensory seeking behaviours like touching and mouthing objects and seeking movement through spinning, on his garden swing or drives in the car. He can be a poor sleeper and is prone to regular bouts of severe hyperactivity and frustration. Andy has no sense of danger and requires supervision and support at all times. His sense of fun can be wonderful and his beautiful smile and laugh brightens all our lives. Andy has a big brother David and a little sister Helen, both of whom compromise many aspects of their young lives to accommodate Andy’s needs and behaviours. They provide a care and support for their brother that is beyond their years. Bailey the pup is a new addition to our family. He is a Golden Labrador – a family pet – that we hope may bond with Andy and help him interact more.
Family dynamics can be interesting but my wonderful wife Jenny keeps us all in line with a mixture of love, tolerance and organisational skills! Family life with autism can be demanding and difficult but also wonderful and inspiring.

Inspired by Autism is a social enterprise that started life around 3 years ago, as a blog and social media page to raise autism awareness. It was also a therapeutic outlet for the many, many emotions that I have experienced since my son was diagnosed with autism 7 years ago now. By sharing my feelings and experiences it has helped break down some of the isolation for families and validate the feelings that arise for them. From an uncertain start where I used I.B.A. (inspired by Autism) as a pseudonym, I was encouraged by the positive feedback and wide interest in my blogs to become comfortable enough to put my name to it and increase the frequency of writing.
I have worked all my days in social care and social work and gradually the connection between my professional training and my family life began to cross over more and more. I have knowledge and experience in the care system, policies and legislation. I gather and read as much as I can about all aspects of autism and I have recently added a post graduate autism certificate to my professional qualifications.
Gradually an increasing percentage of my blog feedback became carers and parents looking for advice as well as support. Around 18 months ago I decided to attempt to set up a parent’s support group – Dunoon Autism Support Group – to offer peer support and share experiences. Living with autism is very unpredictable and at times it has been problematic for us to get together but through online feedback I knew the need was out there. We kept going and now have a more established,
though still developing group.
Last year a social enterprise mentoring organisation, Vital Spark, came to Dunoon. Social Enterprise I learned was about providing not for profit services or supports within communities. At the same time services and supports for families and individuals living with autism across Cowal and Bute continued to be cut back. We lost our specialist social worker and statutory supports became harder and harder to even find out about, never mind access. Though constantly busy with Andy’s care and supporting my family I felt that there was a much needed opportunity to provide some help to individuals and families like ourselves. I embarked on the social enterprise program with Vital Spark and have never regretted doing so. I am still exploring different avenues of the venture but in essence Inspired by Autism aims to be a multifaceted and flexible autism support. Currently I am running our parent’s support group once a month. It has enabled informal chat and support between carers and parents, a platform for engaging with other potential service providers, a friendly cuppa and an opportunity for some holistic therapies. The advocacy, advice and support side of the service has become very busy indeed with parents contacting me regularly for advice about statutory services, problems around assessments and school. I have been attempting to provide one to one support where possible and endeavour to never leave any plea for assistance unanswered.
I have recently been successful in being awarded a start up grant and am developing income streams through providing social care training and giving talks and presentations to a wide range of audiences. My initial efforts have been very well received but it is essential to keep getting at least a small amount of work to fund our activities. I am not running the venture as my employment and have still a day job.
I hope the next steps will be to establish Inspired by Autism as a registered organisation with the relevant authorities to allow us to provide activities for our children for a few hours a week and in doing so give parents a little bit of “me” time now and again. Training / student placements for people interested in working in the ASD field would be another potential goal along with the involvement of adults and young people with autism, providing opportunities for work experience in an understanding environment. I hope to be able to continue raising autism awareness and acceptance and supporting those living with autism to make the world a better place for Andy and others like him.

 

I.B.A.

3 thoughts on “The Story so far!

  1. Great photo. I remember wee Andy(I am sure you introduced him to me as Andrew, am I wrong?) on the boat from Gourock. Keep up the good work I haven’t got you that coffee yet but will at some point. Honest ! Regardless of all the trials and tribulations its so clear your son is surrounded by lots of love and care he is most definitely flourishing as he gets older.

    • Thanks Gordon. Possibly was using his Sunday name Gordon, but Andy it is! He is a special boy and like all children with disability is so worthy of our support and love.

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