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.
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.
Jen and I are as hard working and committed as the next carers but we are only human and get tired and worn out sometimes. The constant ups and downs, the demands of Andy’s care needs and all the usual stresses and strains of family life can leave us feeling flat and worn out sometimes. Even with us both pulling our weight and help from family, carers need help and support. The school holidays can be particularly difficult and often we feel greatly stretched at this time of year. We are feeling it just now even with hard won supports like respite, sibling and young carer support, shared care and the support of Andy’s wonderful carer Nuala.
I spend a lot of time helping other carers to find out about and access these types of supports. They are essential to the survival of many families in similar circumstances. They are not perks or privileges but rather the crucial support that allows carers to do what they do best while saving the public purse millions of pounds each year.
Many thanks to Sense Scotland respite and sibling support services, Crossroad’s Young Carer support, Shared carers , our Nuala and family for helping us manage.
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.
This is an old blog that had resurfaced on FB and was attracting a little interest again. I had been attempting to give different family perspectives on Andy’s autism.
Continuing with family dynamics this is dad’s perspective.
Andy was named for Big Andy Ritchie, the best ever footballer to play for my beloved Morton. Jen went along with it because we liked the name, but for me it was all about Big Andy. He was a magician with a football and brought the most incredible joy and excitement into our lives. I played a wee bit myself and when my kids came along I had a notion that one of them would be a footballer. Things have not worked out that way however. We knew before Andy was diagnosed that he had autism. We delayed putting the wheels in motion because Jen’s mum was battling cancer and we were having another baby. Life was so busy. Andy was in many ways a good baby and really bonded to me and I wasn’t sure (still am not sure) what difference a label makes. Many around us however doubted what we told them about Andy and I suppose it was as much about them to a degree.
The diagnosis was a formality in a lot of ways but also a confirmation. I cried at the diagnosis. I cried because it officially confirmed what we already knew. I cried for what might have been, but most of all I cried because I loved Andy so, so much and it was not the life I wanted for him. To me he is and always will be perfect in every way and this seemed to be saying he wasn’t.
Life as Andy’s dad is both a privilege and hard, hard work. His support needs to live in a neurotypical world are high and this affects most aspects of our lives. We are learning constantly about him and his autistic world and it is a very interesting world! It is demanding of time and has no awareness of, or respect for the “normal” world we neurotypicals live in. He experiences the world differently and has little interest in our world most of the time. I guess the secret is to accept and embrace Andy’s autism and support him to live as full and as joyful a life as possible. Mostly I feel we do this but at a cost of limiting our own life. Generally this is fine but I regret the times I let my other children down by not being there or by not having the energy to support them as much as I would like. The privilege and rewards are in the connections we make with Andy and at these points in life the joy is over-whelming and as a parent and a family there can be few better things. Even though he doesn’t speak (yet) he conveys his love for his mum and dad and brother and sister in his own way.
As his dad I sometimes feel guilty about the amount of time and effort I put in with him. It is frequently more than for my other two beloved children but I have come to realise that as a parent you respond to your children’s needs intuitively. Often that need is greater for Andy and although there is risk (of neglecting the others) it is a risk I have to take because he needs the support. As a family we are a strong unit and Andy is at the centre of that. Andy’s care needs also affects the amount of time Jen and I get to do anything together. Fortunately we are both completely devoted to the care of our children. When I consider Andy’s autism and its impact on our family I am not sad as I know that he is very special. Wee Andy provides a joy and awe in our lives similar to and beyond that provided by Big Andy on a football park and for me it couldn’t get any better than that!
Warning this blog could be interpreted as political ! It is not intended as such. I am simply offering some observations that I believe are in the best interests of my autistic son and many others.
Today the UK Supreme Court ordered the Scottish Government to revise a part of their flagship universal child protection/ wellbeing policy – GIRFEC / NP (Getting it Right for Every Child and the Named Person. ) The contentious part that was flagged up by the court concerned the sharing of information about families between different agencies. In this the legislation was perceived as an infringement of Article 8 of the ECHR that is concerned with a person’s right to respect of their private and family life.
Depending on where you read or hear about this ruling it is either a fatal blow to the policy or an endorsement of the main aims of the policy! Everyone is entitled to their interpretation but I have to say that making any political capital from the wellbeing of our children is completely unacceptable to me.
I believe then that as a stakeholder in this both as a parent and advocate to other families living with autism I am entitled to give an opinion.
Here are some of the key points I would like to make based on experience of this policy that despite the court hearing has already been adopted by most local authorities throughout Scotland.
1. Without major SIGNIFICANT additional investment in services no major improvement will be forthcoming. In this respect GIRFEC and NP ( as well as the Scottish Autism Strategy) are more akin to rearranging the deckchairs on a sinking ship, regardless of the flowery acronyms and laudable aims.
2. Appointing teaching staff to be NP and take a lead role in coordinating the wellbeing of children is flawed on several levels in practical terms. My principal concern being that I want teachers to do what they are trained to do – educate our children. To expect that they will now effectively manage a large caseload of children, many with complex needs while continuing in their role as teachers (or most commonly head teachers )while still working the same hours and without specialist training in for example autism, is simply ludicrous. I have lots of respect for teachers and the wonderful jobs they do but to ask them to become NP on top is simply not viable.
3. The concepts in the GIRFEC system are spurious, vague and will lead to massive variations in application. Eg one families character building past time like climbing could be interpreted as placing a child in danger by a NP, a family home where the hygiene standards are vastly different from the NP’s could be seen as not conducive to nurturing and so on. While such judgements have always been necessary at times the Shanarri Wheel and My World Triangle simply add more complexity and dubiety in my opinion. This part of the policy raises many concerns around privacy for families and young people.
4. In nearly all child abuse tragedies in recent times children have somehow been found to slip through the net. The bulging caseloads of child protection Social Workers have often meant that supervision has not been as frequent as would have been appropriate. While of course every professional has responsibilities and must be both aware and vigilant to potential abuse the insufficient numbers of SW staff must be one of the biggest problems. The universal application of the policy is potentially a waste of already inadequate resources. Recently after the axing of a specialist SW for disabilities a senior SW manager glibly informed us that the NP would now provide such assessment! In reality the NP has neither the time nor the knowledge of disability to carry out such a crucial task.
5. The new protocols around GIRFEC meetings and the NP are time consuming and confusing for professionals and families. In the case of children with disabilities these protocols often delay the crucial assessment needed while working through less relevant aspects of their lives. The structure of the GIRFEC model maintains the same multidisciplinary meeting structure that young people and their parents often find so intrusive and intimidating due to the power imbalance.
While the aims might be well meant the practical problems and lack of significant extra funding will mean that it is unlikely that this policy will serve any of our children better in future and that for me is the only thing that matters.