Jen and I have just returned from a short break with David and Helen. This trip however marked several milestones.
It was the first time we had went over seas leaving our precious boy at home in Scotland. We spent 4 nights in Germany at my best friend’s home. It was a challenge for all of us and had been a long time in coming. As a family we have arrived at this point through a slow and careful process of Andy becoming more and more comfortable at respite and of us being able to overcome our anxieties and build trust in our Carers. Dealing with our emotions, our guilt, sadness and anxieties and recognising our responsibility to give Helen and David new and exciting experiences takes time and effort. They finally got to fly in an aeroplane and go to Europe. Andy was happy and relaxed at respite. Our Carers stepped up to the challenge too, and kept Andy safe and happy.
Jen and I are immensely grateful to everyone who helped make this happen.
Feeling quite disappointed and disillusioned with the Autism Strategy in Argyll. Today’s meeting was cancelled and they have not met since November. The next meeting is the end of March. A year ago they relaunched the strategy with promises of real action. Nationally we were 5 years into a 10 year strategy. The Scottish Government then decided to reframe the goals ( that they had failed to achieve) into very vague outcomes. So far it has produced another written plan and well nothing really. Taking a four month break sends out all the wrong messages to people living with autism regardless of the reasons.
Today an advert for this event by Autism Network Scotland has been circulated. The people at ANS are very good people and in my opinion very knowledgeable people. It is extremely difficult to cater for the geographic challenges of Argyll and the limitations and lack of freedom that people living with autism experience but for most people from Dunoon – apart from the professionals- this event is almost impossible to participate in. With respect to make the sacrifices in cost, time and organisation to attend this event to be told about national ” progress ” that has failed to impact on our lives here in Argyll along with spin about the ” progress ” locally, that NONE of us have experienced is a big ask. While I don’t have the answers I could and previously have stated goals that would be meaningful and life changing for those living with autism in Argyll but I feel I am wasting my breath much of the time.
I have tried to be constructive and I have tried to participate and contribute while being heavily involved in caring for my precious boy, trying to help others and hold down a day job.
My offers of input to training staff have been rejected by our authority’s education department and I am tired and very disillusioned with the situation.
It would be much easier just to play along and say positive, nice things about these matters but this is not just a job for me. This is our lives and the life of my precious son and so many others like him. I implore you to interpret these comments in that spirit. I beg for no more ” window dressing” but rather real , if modest improvements that can be experienced by those affected in the short term who have waited so long.
No offence is meant but nationally and particularly locally here in Argyll the Autism Strategy is still failing to deliver.
On my way back to work today after a period at home and I’m in a reflective mood.
During my time off I have been involved in several DLA applications and appeals for children with autism. Returning to the ” normal” world of work immediately removes me from the constant duties of supervision and Care that are the daily responsibility of Carers.
It is hard to accept why the DWP are so reluctant to acknowledge or believe the extreme nature of autism and the tireless support Carers and parents provide.
Andy has been constant in his needs for support as well as wondrous in his beautiful autistic way of being. I am physically absolutely shattered but also as motivated as ever to respect and support his way of being in this world. We had some lovely moments over the last few days together. At a local leisure centre that we frequent Andy simply wanted to sit on a child’s horse ride and observe the world around him. I sat with him and watched him take in and process the sensory stimuli and activity around him. With understanding he copes in a world that is difficult and highly challenging to him. Awareness and acceptance are crucial to his wellbeing.
I will never stop fighting for this.
This is my first blog of 2017 and the intervening time since I last wrote probably represents my longest break since starting putting my feelings on paper. I have realised that I need to blog but have simply been busy.
I’ve been busy supporting my son and others at Inspired by Autism and I’ve become involved in representing the public view in the brave new world of Health and Social Care Partnerships ( HSCP). This is proving to be a minefield of new terminology, graphs and figures. I attended a very good Autism conference recently too and found lots of these ideas and terminology there also.
A major problem for me is the tendency to consider services and those who use them as commodities and consumers instead of HUMAN BEINGS getting the help and support that has to be the very foundation of a civilised society.
So we talk of hubs, business meetings, system enablers and pathways for high resource individuals! ( or HRI’s – snappy eh?)
When I listened to a presentation recently about HRI’s I realised that we had lost a PERSON who met this description a while back. He was one of the kindest, gentlest and most beautiful of people. He had worked very hard his whole life to raise and provide for his family. He had been struck by personal tragedy during his life and in his final years had endured multiple and complex ill health. It would be far too simplistic to pick out a reason for his ill health. He wasn’t an HRI, no he was my children’s grandfather. Those who promote this new shiny world of health and social care would do well to remember that.
An end to austerity that punishes the poor.
A new fit for purpose ferry for Dunoon.
World peace and respect for all peoples, faiths and cultures.
That more people experience the joy of sharing their life with a dog.
Frank’s Law to be adopted by the Scottish Government.
A recognition of the problems in mainstream school for disabled children.
More (some?) honesty, listening and integrity from our politicians, councillors and heads of service.
A wide spread social model approach to disability.
Greenock Morton to win the Scottish Cup.
Lots of new local councillors in Argyll.
Night 4 of Andy being unsettled. It’s got steadily worse and tonight he is currently bouncing off the walls. Notions of Christmas holidays relaxing at home seem to have evaporated before they have even begun and all of a sudden a couple of weeks is looking like a long, long time when yesterday I thought I was looking forward to it!
Here are my tips for unpaid Carers at Christmas and other holiday periods.
NEVER get seduced by thoughts of holidays and relaxing because that experience generally doesn’t exist for you. Keep your head down and your expectations set at your normal level. Avoid mainstream images of celebrations and festivities.
Do not let your guard or indeed your hair down. Stay work ready and alert at all times. Look after yourself and never make plans. Never complain it only makes you look bad and feel even worse.
Never, ever underestimate the lack of awareness or desire to even try and understand your life by the majority of those around you- particularly those who make a living from disabilities. Always be polite and remember your manners when seeking basic supports and remember despite the massive savings you make to the public purse , despite the fact you are a massive net contributor, other more able and responsible people will decide your worthiness for help.
Remember also that these very folk will avoid direct contact with people with disability at all costs and would struggle to last ‘ a shift’ doing what they demand of you everyday.
This post is dedicated to out of touch social workers, professionals, policy makers and politicians – you know who you are! Do try to open your eyes and seek some exposure to the lives of those you claim to act for.
Now before I am accused of being all bah humbug and putting a damper on your festive let me quickly say that is not my intention.
I generally love our family life with autism but as always simply want to raise awareness of how autistic people and families can experience Christmas.
The loss of routine and the sensory bombardment of the many distinctive and unique elements of the festive can prove problematic for autistic people. Lights, decorations, loud music, crowds, social events, fancy food, unfamiliar faces, changes to television listings, homes overloaded with new and strange presents, waiting for taxis, loud fireworks, awkward questions from seldom seen relatives , new social demands -this list of potential problems is not exhaustive. For some autistic people however the whole heady mix can leave them on a knife edge of fight or flight leading to missing out on events and disruption and unhappiness for families.
So what can we do to provide a more autism friendly Christmas experience?
Well in general we try to celebrate but also keep things as normal as possible.
If you have guests by all means look after them but this does not mean it is impossible to provide familiar foods at the usual times for an autistic person.
We also try to always have an alternative from any problematic stimuli or situations.
In a relatives home that could be a bedroom or quiet space being available to seek calming refuge in. Runs in the car also help but obviously require the driver to avoid wine with a meal. We try not to stop Andy being exposed to things he might like ( and he has often surprised us) but always on his own terms and with a safe option to avoid anything troubling.
The unpredictability of autism can make planning and organisation difficult. A degree of flexibility around times for meals or visiting is helpful and an understanding that if an autism family has to cancel at short notice this is not as ignorant as it may initially seem.
Andy’s reactions to receiving gifts used to embarrass us but now we explain that it often takes him time to assimilate an new object and the expected social response is just not in his makeup. It does not mean he is unappreciative of the kindness offered to him.
Most people want to enjoy the happiness and fun of Christmas and autistic people are no different in that respect.
With a little thought, preparation, flexibility and understanding this is entirely possible and can make the season of goodwill extend across neurodiversity.
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/