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.

Keep the faith!

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This past few days and weeks at Inspired by Autism have produced some of the most disappointing situations and responses to these situations, that I can remember.
Across a range of disabilities, situations and age ranges the one constant has been the fact that all responses have been simply from a resource / service perspective. The system is broken and even the pretence of meeting needs seems to have vanished. The systems are bursting with insulting and poorly thought out ‘ strategies ‘ that deliver nothing beyond their fancy names. Over paid professionals play the game and take the money from the public purse without a care.
Our local government structure is broken also and even the well meaning who want to serve their electorate are powerless due to unholy and political alliances.
It also appears that our government have quietly decided to scrap the Carers Parliament- not the best forum admittedly- but a small token of recognition , a day for Carers to experience a little of the life and perks that our MSP’s and FM have every day.
These events and facts lay me low. I fight these battles for those with no voice, driven by a hope of finding some justice, some small improvements. If I lose hope however, what message does that send to our families? So I must keep the faith but my faith is not in local authorities, councils, policy makers or politicians. No, my faith is in the commitment and resilience, dedication and love that unpaid Carers, spouses and parents show every day of their journeys.

I.B.A.

Upwards and onwards!

IMG_0994Well it’s been a long and eventful summer holidays but we have survived! After some difficult weeks when Andy struggled with sensory issues and mood swings that we think arise from hormonal changes, he has been much more like his old self – giggly and mischievous! This week routine should be returning and although Andy does not attend school a sense of normality will hopefully help him.

At Inspired by Autism things are starting to pick up too. Today I delivered my first autism training event of the new session to the wonderful classroom assistants at Dunoon Grammar School.  My input was received very positively and I learned also about their role and challenges. I hope it is the start of a productive relationship with our local high school.

It was also nice to receive some recognition from our MP and I will most certainly be thinking how we can use Brendan’s kind offer of support in the near future!

 

I.B.A.

We should all care.

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Today I was privileged to witness a partner displaying that deep commitment and love that characterises the role filled by so many Carers every day. It is a humbling and life affirming experience and such is the emotion and warmth it generates, I always find it deeply touching.
This display of selflessness happens in many different circumstances but the degree and intensity of course varies.
For so many Carers, in so many almost impossible and never ending situations, it is the reward of pure reciprocal love experienced by giving of themselves unconditionally, that keeps life going.

“If we affirm one single moment, we thus affirm not only ourselves but all existence. For nothing is self-sufficient, neither in us ourselves nor in things; and if our soul has trembled with happiness and sounded like a harp string just once, all eternity was needed to produce this one event—and in this single moment of affirmation all eternity was called good, redeemed, justified, and affirmed.” Nietzsche

I.B.A.

IMG_1809What a week the first one of the school holidays turned out to be!
Given Andy’s recent difficulties with sensory processing we had already taken the decision not to risk him handling the planned family break to a caravan, and on balance this was probably the correct choice. It is always a case of balancing what we think he would enjoy versus the challenges a new environment will bring and we always give this much thought and consideration. It was however difficult to have to split up at what should be a family time. I went with Andy’s brother and sister for the first couple of days, leaving Jen at home with Andy. His hyperactivity through the night is continuing and it is definitely better managed at home.
On the Tuesday Jen and I had been invited to the Royal Garden Party in Edinburgh and with the help of Nuala, Andy’s Carer and my brother and his family, we were able to attend. It was great to have our role as Carers and the work of Inspired by Autism recognised in this way.
Jen then spent the remainder of the week at the caravan with our other two, while I went home and looked after Andy for a few days.
While Jen and the kids had a great time away, Andy and I had a happy and eventful couple of days. Among other things we went to the supermarket where Andy had a go on a mobility scooter before purchasing a rather large Birthday cake that he devoured with the help of our Labrador, Bailey! Again my sister and her husband visited to give me a few hours off and make sure I managed to cope with the lack of sleep.
It was great to all be united again at the weekend and despite all our travels and excitement of the week I felt most contented back in our garden , enjoying the sunshine with Andy and Bailey yesterday. We had all got through the practical and emotional challenges of the last week and that was a good feeling.

I.B.A.

Carer’s week.

Carer’s week.

I’ve been trying to comment on this annual phenomenon all week but have simply been too busy being a Carer. So before it’s shoved on the shelf for another year by those who have enough time and energy to celebrate it, perhaps I can make one or two observations? Ask a few straightforward questions?
Why are proper and legal Carer’s assessments so rarely carried out AND delivered on by local authorities?

Will the (delayed) Carer’s Act actually be robust enough to deliver any real change for those in the Carer’s role?

Will proper emergency and future plans be put in place with this Act?

Will adequate respite services be promoted, extended and provided to give every Carer a chance to recharge even once a month?

Everything else is window dressing and insult to a group of people who save the public purse an estimated £10.8 billion per year.

I.B.A.

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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.

Partial Awakenings.

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Andy’s period of hibernation from the world has largely continued this week. He has been mostly still confined to his room or on an odd occasion ventured downstairs.
The best it got was a late evening of hyperactivity where he made it into the garden. It was something of a false dawn ( or dusk !) however as he resorted to type the following day. It was a lovely sight though to see him burst into the garden and reconnect with the outside world with excited stims. (See pic!)
One of the problems seems to be the interaction between Andy’s various autistic traits. Like a domino effect the hyper sensitivity to bright light, that confines him to his darkened room, eventually becomes the routine. The need for repetition and rigidity then conspires to make this the ‘ norm’. The same way this rigidity can be utilised in a positive way to reinforce helpful routines around everyday activities e.g. Personal care, it can also trap Andy in less positive situations.
We will keep observing, supporting, loving and encouraging Andy, but it is taking time that the outside world often fails to understand and accept.

I.B.A.

Trapped in a sense.

IMG_1744Andy is having a bit of a miserable time just now. Once again it appears that his sensory processing differences and the bright weather we are experiencing are combining badly for him.
For nearly a fortnight he has been largely confined to the perceived safety of his bedroom, eyes crinkled against the light, wrapped in a duvet. The few times we have been out it has been like smuggling a hostage out, with hoods up and blankets over his head.
Of course Andy cannot tell us , so as always we are making educated guesses, while monitoring him closely. He has not been eating much though has been drinking, but even making his way to the bathroom in his own home, is appearing to be a challenge for him. This ‘ micro transitioning ‘ from one environment to another makes life very difficult. Getting in and out of the car or buildings or into the garden can all prove highly challenging. The unpredictability of it all makes plans virtually impossible.
I love my precious boy with every ounce of my being, but seeing him like this is awful. It’s also why I would take this aspect of his autism away in a heartbeat if I could.
I.B.A.

IMG_1708 Some weeks the up and down nature of life as an autism parent leaves you feeling a little drained.
The week started with a follow up meeting to a complaint about desperately poor practice that affected my precious boy and my disappointment at realising that what was considered unacceptable previously is now become just the way it is. Suck it up innocent young people with disabilities your life chances just got fewer because things are getting so bad that we have changed the goalposts again.
My involvement in the local health care policy forum saw me attend a meeting that was considered positive by some, but involved more talk of cuts in budget and provision. We are fighting not for the services, but rather the right to simply have our views heard.
The local initiative for autism services has resorted to type as the ineffectual private members entity it previously was.
Finally our failing education system sticks with the ‘ every thing is fine here’ mantra.
The daily struggle of supporting Andy bookends every encounter with authority and I’m tired of the dishonesty that affects my precious boy and so many others like him.
I.B.A.