The Journey so far!

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My second son Andy was born in 2006 in Paisley. He was a beautiful wee red headed boy who from an early stage bonded strongly with me. Like all parents I was so proud of him and pledged that I would always do everything I could to cherish, love and support him. I have tried to do this for my three beautiful children but for Andy the challenges have been that bit greater. In 2009 he was diagnosed with childhood autism and a globalised developmental delay after missing crucial milestones. Although not a huge surprise the confirmation was upsetting. As a family we regrouped after the diagnosis however and came to realise that in some ways nothing had changed. Andy was still Andy, still our son and still loved with all our hearts. Andy just required more help and support. He didn’t sleep well. He was a fussy eater. He required very close supervision. He could not talk. His frustrations became the family’s frustrations. His sleepless nights became ours. The care needs were more demanding than with our first child, who was now an infant with his own demands. Oh and we had a beautiful baby girl too!
We engaged with various professionals regarding Andy’s needs. Some were great and sadly some were not. We became aware of the limitations of living in a small and relatively isolated town. Essential specialist services were limited due to geography and limited budgets. There was a lack of understanding of A.S.D. generally and specifically.
Statutory support services required to be pursued. The complexity of Andy’s condition often made us feel like over fussy parents when we pursued support. Resources seemed hidden away behind an overgrown jungle of red tape, rules, assessments and waiting lists. We felt judged as parents rather than supported as carers. Throughout this difficult time I remembered my pledge to Andy and kept going. My wife and I became stressed and exhausted as we struggled to provide care for all our children while attempting to secure vital resources for Andy. We faced up to the need for respite, pursued and fought hard to achieve a basic service and went through the emotional agony of preparing our son and ourselves for letting him go to allow us to survive. Our health suffered, our esteem plummeted, we faced almost constant conflict with officialdom. We became tired beyond anything previously experienced, depressed and isolated. We stuck with it though – not because we are special or super human! – but because you have to. Gradually things have slowly improved to a level that is by no means perfect but usually manageable. Good things happen on our journey and we have learned about the nature of autism, services and surviving in a small and remote town. We are hopefully getting close now to finally achieving essential adaptations to our home environment that will help us care more adequately for all our children.
Andy has made some great leaps and overall I believe that all the effort put in and support provided has brought us to a position that has maximised his overall wellbeing and happiness to this point in his young life.

I.B.A.

2 thoughts on “The Journey so far!

  1. Goodness, Duncan – your story is so incredibly similar to ours, although you tell it far better than I ever could. Andy struck lucky when he was born, getting such devoted parents.

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