At the recent Carers Parliament we were informed that all Health and Social Care Partnerships would be required to sign up to the Scottish Government’s Carer Positive scheme. If I picked it up correctly this is a policy aligned with the forth coming Carers Act Scotland. The policies of the Act won’t come into play until 2018 now and it is not entirely clear how much benefit it will provide. The legislation is badly designed and this means there is likely to be far too much wiggle room for local authorities to actually feel compelled to respond. It does help to raise the profile of Carers Issues however and that may very well be as much as we are going to get.
The Carer Positive scheme for employers will require some basic recognition of Carers rights and awareness of some of the difficulties experienced by working Carers.
People who care for a family member should still be able to pursue some degree of freedom to exercise the legal rights most take for granted. This includes being able to have interests and past times and some semblance of a social life and perhaps a relationship. It also means having ambitions and the chance to realise them in a career or by pursuing academic qualifications.
Despite the fact I work for a local authority and have done for over 25 years I have not fared well since my Carer responsibilities have intensified. Yes I have flexi working but this suits the job I currently do. It is incredible how many people in a social work setting appear to grudge me this. Last year my job role of over a decade was downgraded and my family have faced a very significant drop in income. I was encouraged to go for another post to preserve my earnings but knew this would tip my life work balance and have been unfair to both parties. In a local authority hierarchy is everything and I feel that both my skills and experience are regularly disregarded and over looked.
Sadly it is simply another disadvantage faced by unpaid Carers.
You can find out more about the Carer Positive scheme at the link below.
Today I received my Post Graduate Certificate in Autism. I have one or two other modest academic awards but I am proud of this because it was achieved while carrying out my role as an autism parent and father. It cost me time and money I never really had and in that respect I am pleased to have managed. At times the situations I tried to study in were .. well unconventional!
Life as an autism parent and providing support for others is however a much greater and ongoing challenge. While studying the academics I met along the way generally showed little understanding of life with autism however and in recent times I have finally realised the gulf between those who live with autism and those who earn a living from it.
To all the people living with autism who struggle daily due to a lack of awareness and understanding, and all the families that have no fit for purpose supports but are trying their best to manage while being short changed by those who should know better, that is a remarkable achievement. Everything else is academic.
Sometimes I just need my blog to let me vent. This isn’t a post that will be widely responded to or that seeks to raise awareness ( beyond the plight of an autism family at least). No it’s just some stuff I need to off load. That ok? Thanks.
There has been a few low points since I last wrote here. The kind of moments when you realise that lots of folk simply don’t give a fuck about autism and disabilities. It can be very hard not to see it as a snub, a disrespect, an ignorance of my son’s life and of our lives as Carers. I see a lack of the ability to care from folk who really should. We all should but the ones that are paid to care really, really should. Even if it’s just a charade, they should still go through the motions. I insist.
This week has witnessed the rejection of 6 months of work and effort that I have put in to try and contribute to making the world a better place for children with autism.
A combination of apathy, red tape and well just nastiness based on ignorance and insecurity has sunk my attempts to try and have a voice and a little influence at a local level. In a system whose rhetoric extols the desire to and greatness of embracing partnership working with autistic people and their families the truth is the opposite sadly. It appears that a parents perspective has no place in our local schools sadly.
The local screening of an acclaimed and powerful film about autism shown as part of a film festival in our town and some discussion thereafter attracted only a handful of folk . I understand entirely that those living with autism often can’t get away, Jen covered to let me attend and contribute but it would have been nice to see some of the councillors or our MSP , perhaps some of those highly paid professionals who dictate policy come along and support it. Even if they were simply going through the motions.
The poor treatment of autistic people in an often failing or completely failed system continues and without awareness and acceptance it won’t get better.
The onset of winter is hard and the short dark days affect me more than I care to admit sometimes but the hardest thing of all is the lack of respect or worth shown towards my precious boy.
p.s. Thanks to Ken Clark for picture. http://www.kenclarkphotography.co.uk/
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.
When you are a parent to a child without speech it can be difficult.
Glimpses and guesses allow us to have a degree of understanding about our precious boy. Gestures, expressions, reactions and behaviour shape our limited understanding, as does hearing firsthand accounts from autistic people who share their experiences.
I rarely stop wondering about how Andy experiences the world and trying to enhance my ability to support him.
A rare visit to a football game had me reflecting once again. As I sat in the stadium listening to the shouts from fans it struck me how conflicting, confusing and startling the commands were.
” Hold it” “Send it long” ” Carry it” ” Give him it” “Shoot ” ” Don’t dive in ” ” Hit him”
The assault on the ears and the contradictions were ridiculous. Of course everyone is an expert at the football ! Being able to filter it out and concentrate on the game is manageable for most of us and the players couldn’t hear it on the pitch but it was perhaps another wee glimpse for me into how Andy experiences the world. Loud , invasive, confusing and unsettling is how I imagine my precious boy experiences busy environments and social situations. This insight also informs of course. It prompts me to speak slowly and clearly and to allow time for communication to be processed. Andy’s comprehension can at times be very good , especially if some thought is given to how you speak to him.
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.
As I write today we are nearing the end of a short break in Perthshire. Andy is at respite and has been on my mind on and off. The normal guilt around going away has been dulled somewhat by sheer tiredness and Jen and I have been spelling each other to allow plenty of additional naps.
I had just awoke after another short afternoon snooze and as I made a cuppa I felt a little disoriented. I am a little ashamed to say I was experiencing mixed feelings about coming to the end of our break. Tomorrow life would return to normal and normal has been hard of recent much as I miss my precious boy.
As the lodge was quiet I took my cup of tea through to the television – a novelty to be honest. Today’s day time offering featured Aled Jones hosting a show about a family who had four beautiful girls, one of whom had quite severe disabilities. The other girls and mum were clearly very devoted to their family and specifically their sisters needs. The young woman with the disability had the most beautiful smile and was so clearly happy and secure despite the challenges she faced. As I sipped my tea I realised that the program was actually about a philanthropist who wanted to help the family. Mum explained that her daughter had really benefited from having a loan of a day chair that could be moved and allowed her to relax with her sisters in front on their television or to participate in social occasions. The cost of this essential piece of furniture? Less than £2000 and happily the good soul purchased it for the family. It never helped my conflicted emotions about living with disability though. It felt bittersweet. The family and young woman in particular were clearly delighted but why were these inspiring people having to rely on charity for such an essential piece of equipment? How much would the type of care being provided cost a health authority ? Why was there no state provision for equipment that allowed this young woman a basic human right to ordinary family life?
These feelings drive me to want to keep challenging. As carers we accept life is different in many ways. The desire to ensure the powers that be keep their end of the bargain will always be a struggle. These thoughts I realise have strengthened my resolve and I can’t wait to see my precious boy tomorrow.
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.
When I was a wee boy we used to go catching bees and wasps in jars. I’m not entirely sure why we did it but we generally released them a short time later. I remember the wasps used to get very agitated at being trapped.
It’s after midnight now and Andy is displaying frenetic behaviour around our home once again. I am desperately tired and have a big day tomorrow but sleep is still a long way off I think.
Andy has been in the wet room for most of the past 3 hours running the warm water over his hands and arms. I attempted to prompt him to bed a little while ago and he did go to his room. He has a sliding door with a little window in it. He repeatedly opened and shut the door and as I observed him he stimmed furiously behind the glass panel on his door.
He is back in the wet room now and is very animated and hyperactive. He stamps up and down the stairs, puts lights on and off and opens and shuts doors. Now he is back to the taps and water . I am writing this with one eye shut as I struggle to stay awake.
Unlike those angry wasps sadly I cannot free Andy.
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.