Hinterland.

A99FEDAB-3329-49A0-ADFB-611295831F52

I’ve been running Inspired by Autism for almost 5 years now. I enjoy the challenge and the modest success achieved. I love talking to people and audiences about autism and I love the peer support that has developed among a wonderful group of people living with autism in Cowal. I do it simply because I believe in small ways I can improve life now and in future for my precious boy and others like him. It’s preferable to the feeling of helplessness and failure that all parents of disabled children experience much of the time.

Lots of my time and effort is spent in another darker place though. That place is a hinterland that exists between the artificial world of government and regional policy, adorned with wonderful titles, half truths and plain lies, and the daily lives of people and families who live with challenges that the privileged could not imagine. These challenges often occur in the pursuit of very basic human rights. The stench of hypocrisy lingers in the hinterland, as opportunistic individuals seek to further their reputation and that of their masters. Devious but weak legislation and policy give a veneer of respectability that covers the real agenda of remaining in power and enjoyment of privileges. It’s a dangerous place to make a challenge as reputations are staunchly and robustly protected by the power that governments, politicians and local authorities are able to wield. The unleashing of such power ruins lives and crushes those who are not prepared to tow the party line or to go along with the pretence that all is rosy in the garden. It’s frequently a lonely and arduous place to be. It is a place that regularly drains you of hope and belief in your fellow man and in the creation of a society in which we actually care about each other. It is a place where you cannot win and where you measure success in terms of damage limitation and incremental improvements for people.
This hinterland is not a place that is good for your health and wellbeing. I choose to come and go from it as I see necessary but for so many these days there is no revolving door.

I.B.A.

Time to speak up?

FFFDD22B-9866-49D7-B2B5-4CA0C5B9D750

This post is a little different. Tonight I am asking for support for a petition calling for our government here in Scotland to do more for autistic people and families. It’s not an easy post to make in the sense that I have contacts – some of whom I might even class as friends or people I respect that work with or for the Scottish Government. Similarly I have many friends who are political supporters of the current Scottish Government. While I respect other views on the Scottish Autism Strategy, I certainly don’t agree with them all.
If you work with the strategy I don’t expect you to agree but I would ask you to reflect on the difference between your position and that of people who rely on autism support services. The goals set out are loose and vague and fail to be demonstrable beyond isolated examples of small , sporadic improvements in resources that are proving to be unsustainable (One stop shops) and underused (much of the menu of interventions). There has been no major change as to how we deliver services to those living with autism or improvements in the numbers receiving adequate or any support. The post code lottery still exists across our authorities and in many cases the situation is worse , not better than when the strategy was launched in 2011. E.G. reduction and scrapping of specialist disability social workers, the emphasis of assessments being transferred to already overwhelmed education professionals, the reduction in respite services. I am unaware of specific improvements for any particular age groups and the absolute failure to provide services for young adults/ adults on the autistic spectrum remains as it was. Of course a strategy approach is (conveniently) much less likely to have influence than a legislative change and in that respect many feel they were short changed. The strategy has been heavily involved in guidance for professionals employed in autism services but sadly light in meaningful, measurable and practical improvements in support services and resources.
I believe that the needs of autistic people are far too important to simply say nothing. I have serious doubts that the current request for feedback from ‘stakeholders ‘ from the Scottish Government is a process capable of objectivity and proper critical analysis. I believe that 7 years into a 10 year failing plan we are at the last stage possible of salvaging anything of serious worth in making real impact and improvements for those living with autism.
Please consider reading, signing and sharing my petition.

https://www.change.org/p/scottish-goverment-let-s-make-real-change-happen-for-autistic-people-and-families-in-scotland?recruiter=45827484&utm_source=share_petition&utm_medium=copylink&utm_campaign=share_petition&utm_term=share_email_responsive


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.

AC00E193-651C-4033-BE54-4A088F434420

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.

Best Friends Reunited!

2C8D3DB0-9CBC-40CF-A1A5-F2D25C244598
Andy has been at respite this week and by all accounts had a great time. We had a wonderful rest with the other two in Crieff. I spent most of the week walking with Bailey in the woods and hills. It has certainly done me some good I feel.
We are now all back home and the house is quiet tonight, apart from the happy chuckles coming from Andy’s room, where he and Bailey are catching up and re establishing their close bond. These wonderful sounds quite simply make our house a happy home with Andy and Bailey’s deep bond right at the centre of it.
They have been interacting for the last hour or so and the process has really helped Andy transition back into his home after his time away. Wherever one goes the other is usually close behind. It’s nice to be home!

I.B.A.

A heavenly sound!

IMG_1003I have rarely been able to find time for writing recently due to the volume of work at Inspired by Autism but really wanted to share a beautiful and insightful interaction from last night. As most will know Andy now has a constant companion in our Labrador Bailey. Like every other facet of his life however his interactions with Bailey had reduced during the spring / summer months when he experienced a catatonic sensory breakdown. Thankfully we seemed to have moved on as the days turn autumnal.
Andy has no conventional speech although his verbalisations certainly have meaning and emotion in them. His happy contented sounds are for Jen and I probably the most uplifting sounds in our lives. Andy tends to limit these to one or two outbursts with people and then he tends to move on or away. He is so often constantly on the move!
Last night as I was attempting to get some sleep, Andy’s happy sounds could be heard. They appeared to be ongoing. A continuous mmmm and occasional aaaahhhhh!
The pitch of the sound rising and ending in whooping as he ran out of breath before starting the next. Andy was in his bedroom with Bailey and enjoying the dogs full attention and close proximity due to the large lump of homemade bread they were sharing.
Now I realise this might all sound a bit strange to those not in our position but this is Andy’s voice, his happy, contented child voice. It is a sound that for us is simply the best sound in our world!

I.B.A.

Keep the faith!

IMG_0693.JPG

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.

IMG_0921

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.

IMG_1747