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.
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.
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.
What a strange life we are living at the moment! Due to the latest bout of Andy’s hyperactivity we have all regularly been up through the night over the past while.
Last night was particularly difficult for us all. Andy appeared distressed and agitated for long periods and his only distraction was the water running from the taps in the bathroom, shower room and kitchen. Jen and I fell into our usual pattern of sharing the responsibility by taking turns at supervising and dozing throughout the night. By the time it was light again Andy had calmed a little but simply could not resist the urge to keep playing with the taps. I decided to take a chance on encouraging him to go to bed by putting the water supply off. It could have produced more agitation but in fact it seemed to be more of a relief to Andy and although he never settled to sleep until after 9am it appeared to help.
We all spent most of today sleeping but by early evening were all on the go again. Body clocks out of synch with the world around us, the day was over before we began our waking hours. Andy’s anxiety was a slow burner but by 8.30pm he was stomping around clearly distressed. I took him out in the car dressed in pyjamas and when he indicated he wished to go to a local holiday village for a milkshake I just drove up without thinking much about it. It was a little strange then to see families on holiday having meals and drinks and generally enjoying themselves. The place was very busy – oh yeh it’s August – and we endured quite a few stares as Andy ran about the place still very hyperactive and overwhelmed. I realised I was quite dishevelled myself and we must have made quite a pair as we struggled to fit in to this parallel universe. After we managed to get back to the car I reflected on how I felt – fuzzy headed, out of step and different from those around us. I wonder if that is how Andy experiences life most of the time?
We are facing another potentially long night and as I write this it is way past midnight. Andy is dashing around in and out to the garden carrying a piece of pizza and playing with a rather bemused puppy. His life is driven by such different goals and yet he is in a world that fails to recognise or accommodate him as he is.
Our wee pup is now 6 months old and his positive contribution to all our lives just keeps growing, just like him!
One of our main hopes for Bailey was the potential for a constructive relationship with our 10 year old autistic son Andy. We have been at times simply stunned at their interactions. Andy’s desire to touch, explore and lark about with his new friend has been wonderful to see. Bailey’s tolerance, gentleness and enthusiasm for their relationship is testimony to his beautiful nature.
Where human interaction – eye contact, social contexts and verbal commands – are so often overwhelming for Andy, with Bailey interactions are much less so. In fact it is Andy who very often initiates their “conversations” and as befits the interactions between a child and puppy the context is generally one of fun and frolics!
On Andy’s recent return from a respite visit the often problematic transition back into our home and family was eased greatly by his immediate happy reunion with Bailey. The pressure to face all the human contact that characterises our reaction to his return was simply deflected as he went straight to our beloved puppy, smiling and laughing as he put his head onto Baileys in greeting. They had their usual dance of mutual affection up and down the hall, a mass of stims and a vigorously wagging tail.
It was another great moment from the gifts this wee dog brings to family life.
I have been trying to take on too much recently in the role of autism advocate and have in turn been less able in my carer / dad role. The fact that Andy has had a cold and has required lots of love and reassurance has been a “heads up” for me. With his increased needs comes a chance to be reminded of the rewards Andy gives back in his joy, happiness and love. My dedication to him and love for him is the most important thing in my life I was reminded. He is the reason for everything I do and I would not have it any other way. I have therefore taken the decision to try and take a step back from the futile business of trying to influence those at the policy making level.
The facts are there if they were truly interested. I don’t believe they are.
And so my priorities will be immediate and local issues from here on.
Round about Andy’s care this week I was privileged enough to be asked to speak at a local launch of part of a new piece of forthcoming Carer’s rights legislation. It was well attended and received though sadly NOT ONE invited councillor, politician or social work professional found it important enough to attend. I will let you draw your own conclusions!
We also had another very busy drop in event for local autism families. It went well – informative, relaxed and comfortable. We try to support each other emotionally and practically. The need for our group had never been more pertinent.
Unlike the chicken and the egg there is no dubiety over what should come first when considering resources for the vulnerable in our society. Our local authority is about to embark on a “consultation” with the public over what services to cut. Unfortunately the proposals put forward by the council leaders will have an unfair affect on children with Additional Support Needs (ASN.) Many other groups could be similarly affected it has to be acknowledged. The proposed axing of a large percentage (45%) of ASN classroom assistants will impact on vulnerable children at a crucial point in their lives. Presumably the powers that be have decided that these children may just have to manage without and yet the lack of adequate classroom support is already a hot topic at our local support group and beyond. There is a legal requirement surely that such needs must be met? Just what was the rational in the closed committee that justifies potentially ignoring children’s Additional Support Needs for education? What message does this give to children, parents and professionals about the validity of these needs? We are talking here about serious life long conditions like Asperger’s Syndrome, Dyslexia, ADHD, Tourette’s Syndrome, Down’s Syndrome, Sensory Impairments and Physical Disabilities. The small amount of Educational Psychology input is also facing a a proposed cut. So much energy and effort has went into raising awareness about disability and the issue of ASN that it seems incredible that this is even being considered. Surely senior management posts should be stripped to the bone before considering removing this essential support?
Perhaps to expect a truly ‘needs led’ service puts you in fantasy land in these days of brutal cuts to welfare and the wellbeing of the most vulnerable. In all my years in social work, social care and as a parent I have never came across a service that fully merits that description but some reasonable compromise must be strived for surely? To fail to acknowledge that ASN needs exist or that every child has a right to suitable education is morally indefensible.
I watch from the window, as my precious boy bounces on his trampoline in the garden.
His stims appear like an art form – a mime of excitement that seem to celebrate his surroundings. He looks upwards to the blue summer sky that forms the background to the branches of the trees blowing in the wind. He is delighted by the summer breeze on his naked body. The feeling of warm air and the energy in the trees intensified by his own movement as he bounces and stims and laughs and smiles. He rejoices in his solitude using his senses to explore the environment around him. Care free, happy and without inhibitions. He pees in an arc laughing joyfully. He giggles and jumps and for now all is fine in his world. Contentment and joy abound as his sensory receptors seem to be over flowing with only good things for now at least. No demands for uncomfortable social interactions or confusing behaviours or the harsh lights and sounds of a modern and complex world. Only the natural sounds, sights, smells and feelings from the garden. Unthreatening and beautiful. Just like my precious boy, at one with the world. I watch and learn.
My precious boy has spent so much time in and around water this week we think he might dissolve! His sensory seeking behaviour has been on overdrive and the desire to play with or immerse himself in water has been overwhelming for him. My understanding of this is that the water is providing both tactile and visual stimulation. Sensory integration issues are very much a part of Andy’s autism. For those who are not sure about this let me explain it the way it was best explained to me – simply! If you think of the brain as a processing system for sensory stimulus like visual, tactile or from any of the other sensory systems then these signals are interpreted and sorted to allow our body to produce the correct response e.g. Scratching an itch. If the signals or stimuli are poorly or weakly received this affects how they are interpreted leading to the body failing to produce an action or response e.g. keeping your hand under a hot tap. This is referred to as a hypo sensitivity. The opposite of this is hypersensitivity. e.g. Andy struggles with bright lights at times and I believe this arises from a hypersensitivity to this stimuli. His brain processing system causes him to experience a light that most of us can cope with, in an extreme way, causing distress and difficulties for him. These hypo and hyper sensitivities can be unpredictable and have a very debilitating affect on an individual’s ability to function. Ok end of amateur lecture on sensory integration!
Andy has been drawn to all sources of water almost continuously over the last week or more. This has involved bath after bath and shower after shower. In between times he has been playing with water from taps, washing up bowels and drinking bottles. He soaks floors, clothes, towels and carpets. He loves to spray water by putting his hand over taps and to pour water from bottles, cups and jugs. He clearly enjoys the feel of water on his body, tactile stimulation, and watching water moving and shimmering, visual stimulation. This sensory seeking behaviour is at times completely overwhelming for Andy and makes it so difficult for him to process any other information like verbal instructions. If he cannot get what he desperately needs and craves we can experience tantrums and difficult behaviour. An example of this just now is getting him out of the bath or shower. Many behavioural problems experienced by people with autism are poorly understood and cause disappointing responses often from people who should perhaps know better. Understanding the behaviour promotes tolerance and helps find solutions or coping strategies. A good example of this is the ” tornado tubes” we have used to help with Andy’s water fascination. This is simply a plastic double sided screw top that allows two bottles to be joined. With water inside the device Andy is able to turn the bottles over and watch the water flow inside.
Many unusual behaviours displayed by people on the autistic spectrum can have a very logical reason behind them if properly understood. Perhaps we all need to learn more about autism before we judge or comment.