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.
Well 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!
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
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.
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.
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.
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.
Andy’s birthday was in May, a distant memory now that Autumn is almost upon us.
As always it was so hard to think of anything he would truly and definitely like for a present. In her usual thoughtful way Jenny attempted to buy him gifts that he might enjoy. Andy tends to go for small things he can carry about that tick some boxes for him in a sensory manner. The attachment is normally short lived and the object is either discarded, destroyed or removed if it is dangerous or becomes upsetting.
Some examples were kitchen implements – large spoons or spatulas, straws, watches, perfume bottles, pens, plastic bottles of sauce, condiment sachets in cafes and measuring tapes – the cloth ones and the retractable ones and a large variety of lids. Each object has a significance to his sensory processing – stimming with stick like objects, smell and taste of perfumes and food products, flapping with objects and running water over lids. Arranging condiment sachets on a table and then putting them back seems to show his need for sameness and repetitive actions. Interesting maybe but hardly birthday presents!
When Jen purchased a hammock swing in May for Andy’s birthday I had my doubts. He spent the summer on his conventional swing again ticking a regular sensory need that seems to calm him. Everyone else enjoyed the hammock right enough!
Clearly Andy was watching us all use the hammock but he merely laughed when we encouraged him to have a go. Well this afternoon four months after his birthday he finally found his way on to the hammock. It takes Andy time to assimilate anything new. His preference usually being for sameness and routine. In his own time however he finally took the step to try the hammock and clearly found it to his liking.
Jenny’s knowledge of Andy’s way of being and what he enjoys paid off once again. We just required to be patient.
“All these people dislike being seen as ‘challenging’. They feel that their actions are often misunderstood and are the result of living in environments that can often lead to an overload of stress and anxiety.”
This is based on the feelings of autistic people after being labelled unfairly and negatively for simply being who they are.
It encourages reflection on the diversity of our world, to think rather than judge, to be aware rather than ignorant, to accept rather than criticise. I like it.
This statement is from an excellent NAS e-learn course that I am testing with a view to using as part of a training program pilot, subject to final agreement with our local authority. Hope I get the chance to have some input!
I felt sad this week when Andy became very interested in our landline phone and was constantly lifting it and listening to the dialling tone until it went to that continuous beep. I reflected with Jen on why he was doing it and realise it was probably another example of the repetitive behaviours that are a characteristic of his autism. I could not help thinking about how he can’t say hello or speak to someone on the phone though. Maybe he was wanting to speak but just couldn’t do it. Maybe he thought if you pick up the phone you can speak like everyone else and tell us all about his life, his hopes and wishes…….. The more I watched him the more it bothered me and left me thinking fuck autism it really sucks sometimes. I want to hear my precious boy speak to me, to call me daddy just once.
Sometimes you just have to let the emotion wash over you. I was fine a short while later.
Apologies to all my autistic friends. I love you all and mean no disrespect.