A Carer’s Struggles!

Duncan F MacGillivray is an autism parent and social worker who felt compelled to set up an autism support charity to help the ever increasing number seeking advice and advocacy. Based in Argyll, ‘Inspired by Autism ‘ is run voluntarily in his ‘spare time’ and aims to offer independent support to the many autistic people and families who have been cast adrift by a failing support system.
In this short piece Duncan expresses his rising disillusionment at the current system and it’s treatment of those who attempt to make a stand.

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Sometimes it seems that everyone whose role can significantly impact on those living with disability, require to be rewarded in one way or another before they will act.
After another tough night as an unpaid carer this sentiment feels strong today as I begin to review some of the current cases at ‘Inspired by Autism.’

Personal and financial gain seem to dominate the goals of so many we encounter on the journey of pursuing the wellbeing of people living with autism and disability. I say this with due respect to the many poorly paid and highly motivated professionals who constantly do their best in a crumbling system.

Offers of support can often materialise as symbiotic in nature – you scratch my back , I’ll scratch yours – and that is nearly always a demoralising experience for those in need.

This week it has been an M.P. who wants his picture in the paper in return for a template letter of support to the DWP from his office staff. (Is that not their job?) Push them for a little more to try and tip the balance in favour of those barely surviving in a system with impossible odds and watch them withdraw. Challenge their party’s policy or ask them to stick their neck out and they will disappear quicker than the humanity of a newly appointed cabinet minister.

Policy makers at government and council level often need autistic people and their families to support their ideas and cost saving schemes but I have long grown wary of ‘free lunches,’ for there are none. Here the currency of choice is again career enhancing publicity backed by dodgy stats as they move on up the ladder without a glance backwards at the chaos and misery left in their wake.

The list goes on – G.P.’s wanting to charge those in poverty for endorsing a legitimate claim for benefits, councillors looking to be associated with grassroots initiatives, principally to score points from their rivals, local authorities whose reputation is the only thing that really matters.

At our charity I guarantee that the only goal and motivation is to act in the best interests of those who seek support. I will challenge and advocate for the wishes and legal entitlements of those affected by autism and disability. Our services will always be free of charge and will not be shaped by funding application’s criteria, nepotism, politics or any ulterior motives, regardless of who attempts to thwart or discredit us.
That’s a promise!

I.B.A.

The Gift that keeps giving.

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A year and a bit into our dog adventures as a family, I remain absolutely smitten with my love for our Labrador, Bailey. This weekend we have had my good friend Barry’s dog staying for a few nights. Skye is a beautiful wee Dalmatian cross and a sweeter wee dog you’d struggle to find.
As autism parents we have something of a stressful life and recently it has been particularly difficult for us all as Andy’s sensory processing differences continue to plague him.
For a while yesterday afternoon things really started to get to me. Like so many others, I too, am prone to bouts of anxiety and depression and yesterday the pressure and worry about Andy had me in a downward spiral. Experience teaches us though, that as George Harrison sang, all things must pass and this sentiment often helps me through this type of difficulty.
This morning I took Bailey and Skye for our usual walk in the woods behind our home. The sun streamed through the deep greens of the foliage and the woods and trails were quiet. I walked slowly but steadily and became engrossed in the surroundings and my canine companions, happily bounding around . My thoughts slowed and my anxieties dissipated as I stole an hour to myself with these beautiful dogs. My mood lifted and things seemed better as I returned to family life.
I don’t know how I managed without a dog for so long.

I.B.A.

Fighting on all fronts.

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Lots going on this week in the quest for services, support and understanding for ASD. Some day it all needs to be documented publicly because much of what goes on is scandalous and can get me down. The brutal cuts that are coming are going to have a devastating effect on many vulnerable people who deserve so much better in a civilised society. For many families living with disability there are cuts on a number of fronts. I was informed this week that the local authority I work for will be imposing a substantial pay cut on me and many others. We will oppose these actions as vigorously as possible but last week’s election results have given something of a mandate for these types of cuts.
However there were some positives this week too. Today I found out I had scraped a pass in my second module of a post graduate certificate in autism. That’s two down one to go! Given what’s going on in our lives I was happy with the pass and the fact that my feedback stated ” The student does meet the basic criteria well and the content of the information meets the necessary standard. It is the presentation which reduces the grade of the submission.” Well I guess sometimes your presentation just goes out the window when you are an autism parent 😳
Now that the exams are over and I don’t start back till September I am looking forward to a long summer of partying 😄. Well maybe not! I remember my final exams nearly a quarter of a century ago and the crazy celebrations. Actually I don’t but I have it on good authority it was a wild night!
We also had another local autism support group this week and it is starting to take shape I feel. Slowly our numbers are building and it is great to have a chat and cuppa with other parents and carers. It is incredible the experience and knowledge that emerges at such events and I am proud to be part of it all. We hope to make a very positive contribution to the lives of those living with A.S.D.
Let me end by reflecting on and acknowledging the amazing things achieved every day by those with autism and their parents and carers. It is not always easy and the challenges are often great but the effort is easily worth it when we succeed. Whether that is securing a service or resource, overcoming a sensory or social difficulty or just getting through another day. I salute you all even if our authorities and politicians so often do not!

I.B.A.

The Journey.

I remember the diagnosis day so well
Three severe faces with bad news to tell
The tears we shed for what might have been
Now, several years later into a life unforeseen
How are we doing? What can I say?
Like others we’re surviving, finding a way.
Now life is not easy, but is not short on joy
Thanks to my gorgeous and precious boy
There are challenges and difficulties every day
Resources to fight for, but we’re now up for that fray
To care for my son is now our main role in life
The trials and tests, the upset and strife
The laughter and happiness, the way we adapt
To this winding journey that will not be mapped
But each milestone he reaches in his own special way
Brings pride and happiness that words can’t portray.
True friends we have found who have shown they care
But many others not willing, our troubles to share.
We follow a path impossible to know,
Trying our hardest, and learning as we go.
Looking ahead we hope for a future that’s bright
For our precious wee boy who has every right
To live in a world without discrimination and pain
For this to happen would be society’s gain!
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