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.
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.
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.