A beautiful family day in the sun at Sense Scotland’s Caravan in Roseneath, was a great way to spend World Autism Awareness Day. I spend every day trying to raise awareness and acceptance in some form or other but today we just enjoyed a lovely day.
It’s a beautiful November evening as I sit at Gourock waiting for my ferry home. My view across and up the Clyde is of Helensburgh where my precious boy is at respite.
I picture him over there stimming and buzzing about the respite unit. I am looking forward to a rest tonight- it’s been after 3 am the last few nights before our home has been settled. I miss my precious boy though and send love and hugs across the water to him. Jen and I want to be able to care for Andy for a good few years yet and this is an essential part of this process.
Thank you to those who make this all possible. Sense Scotland and their staff provide a very good quality service. We are fortunate indeed.
In recent times I have written about Andy’s chronic hyperactivity and the impact that this has had both on him and the rest of our family.
This week has witnessed a change in Andy’s behaviour and activity level. He has been calmer generally I suppose you would say. Calmer and more sedentary and settled. His sleep has improved and he has been less agitated.
Whilst this is a change we have seen before, it is rather rare. Theories abound regarding why this change has happened. Perhaps he is ‘ under the weather’ or simply worn out by the level of activity and lack of sleep over the last weeks. While these are possible reasons I also think the change of season is linked in some way or other. Looking back over the years this type of change has probably been more common in autumn and winter months.
Currently Andy is happy enough but simply seems more comfortable in and around his bedroom and home. He has been snuggling up with us on the settee and watching TV or interacting with Bailey. I think we are all benefiting from both the rest and relative normality of family life.
Like all autism households we just have to go with the flow, stay on the rollercoaster ride, enjoy the good bits and cope with the challenges.
The inconsistencies in the provision of services and supports across local authorities and indeed the whole country are simply wrong in my opinion.
Allowing autism carers and parents to come together and share experiences is crucial in attempting to challenge this post code lottery.
Sharing experiences on line also has an important role in trying to address this issue.
I received the following message from a fellow autism dad who requested I pass this on for the information of other autism families. I am happy to do this as currently LA’s are simply not reaching out to people living with autism.
I hear statements every week from professionals that are at best their interpretation of policy but are driven more by the limits of the service rather than being helpful or inclusive in nature. At very least we require to ask the questions and query a service based interpretation of policy and legislation.
“Duncan. My son attends a school by virtue of a placing request. We drive him there. South Lanarkshire Council refused travel costs as it was a placing request. They maintained this refusal for 18 months. Please point out to people that the Council is responsible for any and all costs involving a disabled child’s attendance at school, even if it is as a result of a placement request..”
Thank you for this Frank. I hope it allows others to ask and challenge service providers and education authorities.
The picture is from a letter of apology from an education head of service. I decided to spare naming and shaming this time.
I have never been busier at Inspired by Autism. The 10 hours I have pledged to the project are getting stretched way beyond this nearly every week. Sometimes it is a bit much and yet I still feel the desire and drive to do my best. I could and would never want to let down any person or family struggling with the lack of awareness and injustice that seems to characterise so many authorities and services these days. The small but significant improvements that I can make to people’s lives are however a great reward. I feel at home with the social enterprise model.
Health and Social Care Partnerships and their governors, the Integrated Joint Boards are flawed. They are flawed because any perceived benefits of joint working are overshadowed by the reduction in budget and the need for cuts. They are flawed because of how they have been set up and structured and how there is a lack of accountability of their actions. Indeed the politicians and policy behind them are flawed because their prime objective is the saving of budgets. Those extolling the virtues are selling snake oil. They know the cost of everything and the value of nothing.
The challenges for people living with autism have never been greater and the need for independent support and representation have become virtually essential to a positive outcome today.
At a personal level the HSCP I work for have decided that social care training is now reduced in importance. Proof of this is the 10% plus pay reduction that has been imposed on me and my family while my workload has increased greatly.
To be honest sometimes I think I should be trying to earn more money for my family but I take much pleasure in the knowledge that social enterprise is different. It is about benefitting the community and improving life for the people who live there.
The impact of social enterprise is measured not solely in monetary terms but also on the positive change to the community. Local authorities, health boards and HSCP’s are simply about money these days. From the massive salaries and expenses politicians, senior managers and heads of service take and their desperate struggle for self preservation, to throwing their weight behind poorly thought out and untested initiatives that sound and are too good to be true, there is a complete lack of consideration for the wellbeing of the individuals their posts exist to serve.
If those in positions of influence could adopt a little of the social enterprise ethos perhaps the situation locally and nationally would be a little less grim.
I am delighted to announce that Inspired by Autism – a social enterprise – has been awarded the Scottish Rural Parliament’s Innovators Award for Health and Social Care.
Many, many thanks to all who voted for I.B.A. after we were shortlisted.
The award is dedicated to my precious boy and I will use the platform and recognition to further promote autism awareness and the support needs of all who live with autism. The journey is not always easy but continues to inspire me.
Inspired by Autism was short listed for a national award this week. It now comes down to how many internet votes you get and can all seem a bit false in that respect.
I have been asking for your support so I thought I might set out my reasons for this.
Inspired by Autism is one autism dad’s attempt to provide support, advice and advocacy to people living with autism and to raise awareness at all levels of our community. It was born from both my frustration and passion to challenge the barriers to a full life that autistic people face today in Argyll and indeed across Scotland.
My knowledge comes from a career in social care and social work, self funded study but most importantly living with Andy’s quite extreme autism every day of my life and through my voluntary work helping others with similar issues.
So far I have tried to campaign through legitimate democratic channels. I have set up a proper legal company. I have paid for and achieved post graduate qualifications.
I pay for professional registration in social work. I have put hours and hours of my precious time into Inspired by Autism.
Sadly I can’t seem to even give away my hard won expertise in autism to those senior professionals who take a comfortable living from autism, such is their determination to protect their positions, to maintain the boundaries.
I have offered my input to untrained and under valued workers. I have sourced ‘approved’ resources. I have written training programs. I have put my time and money, my heart and soul into Inspired by Autism. I believe in it and know more than I know anything that I have a positive contribution to make at a variety of levels.
New policies talk of a meaningful partnership with parents sadly something I have seen little evidence of.
This award would give me and my social enterprise some form of recognition and acceptance of the work and care I carry out each and every single day to the very best of my ability.
This award would recognise the struggle that drives my work , a struggle faced by so many – the fight to make people autism aware at all levels of our society, particularly at policy making level – nationally and locally where it is perhaps needed most.
This award would give a voice to those who cannot speak and whose needs are overlooked because I promise to use any opportunity I can to make those voices heard, no matter how hard it is and who falls out with me for telling the truth.
If I do not get enough votes to win however I will still be here quietly doing what I believe to be right for my son and others like him.
It is a struggle I can’t and won’t ever walk away from.
If you want to vote for IBA click on the link, scroll down to Health and Social Care Award, select IBA by clicking on it and press blue vote button at the bottom of page.
The kids are playing at the park on this finest of July evenings. Andy is happy and content buzzing about doing his own thing around the caravan. I sit outside and enjoy the view of the loch, Bailey asleep at my feet, as I take stock of my life and surroundings. The last year has been so challenging. Jen and I are almost constantly tired. My life is essentially good though and we have so much to be thankful for. I try to grasp the moment knowing it is important to savour these times. Andy has made great progress in coping with the challenges he faces everyday and we are rightly proud of him and the fact that we support him to the very best of our abilities to do so. I dwell on these thoughts as I enjoy the peace, tranquility and beauty of our surroundings attempting to build a deep resolve for the difficult times we are sure to face on our journey.
Many thanks to our friends at Sense Scotland for making this possible.