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.
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.
A Family Outing!
Last week I read a great blog by a wonderful autism mum about the difficulties autism families have simply leaving the security and safety of their own homes.
We often have the same problem here. It tends to mean you are forever weighing up the pros and cons of attempting even simply outings. We are fortunate to have a car and this helps as it almost acts like a mobile extension of a familiar and safe place for Andy and can avoid major problems in the community. He often refuses to get out of our car when we arrive at a planned destination though.
I was thinking about all of this today when we decided to try a short family outing to Benmore Botanic Gardens. It was our first outing of the holidays with the whole family, including our new addition, Labrador pup Bailey.
The sun was shining by the time we all piled into the car and it felt great to be at least trying a family excursion. We were all aware however that as always we might require to change our plans at short notice.
Today was a success though and Andy was happy to get out of the car and into the gardens for a walk. It felt lovely to be strolling through this beautiful place with all our children and the dog. We were a real family doing a “normal” activity. We even managed an ice cream in the cafe afterwards.
As many other families head off on holidays abroad or embark on a program of activities with their kids it can be difficult for autism families to simply survive school holidays at home. As a parent it felt good today to be doing even a small thing as a family.
It is 3am. Andy has not slept with any regularity for quite some time now. A horrible combination of hyperactivity, compulsive checking of his home environment, repetitive behaviour and anxiety seem to be fuelling his unhappy state. He stomps around the house angry, then laughing – in and out of the bathroom where he is constantly seeking the sensory comfort of the water from the tap. Up and down the stairs hundreds of times in a seemingly endless pursuit of some peace from his torments he runs.
I lie wide awake. The anxiety ebbing and flowing as I feel his pain then momentary relief as he becomes quiet. I am hoping and praying that this will be the last cycle of his distress and then my world is again shattered by his torment. My chances of functioning effectively tomorrow dissipating with the growing light outside. Another day filled with worry only bearable due to the numbing tiredness as we attempt to go about our business.
We do not seek sympathy but rather an awareness of how autism affects our lives and perhaps a lessening of the judgemental attitudes that so often surround child and carer.
Another week with autism. Jen and I have provided our normal support to Andy all week. Early mornings, late nights. Daily covering 50 miles in the car to help calm Andy down. With the support of our wonderful carer the time off has been largely spent supporting other autism parents, attending social enterprise training and preparing for autism presentations (me) and doing the ground work to set up an activity and social club for young people with disabilities (Jen).
Helen my daughter turned 8 this week also and I hardly saw her until late evening. Once the children are settled I try and turn my attention to lobbying for disability rights any way I can. This week I have been in contact with two MP’s, a councillor and a journalist.
I received a reply from an unknown Scottish Government worker to my correspondence with our First Minister (sent in January) about the failure of the current policy to achieve anything on the front line since it came into force in 2011. ( in Argyll things have got significantly worse actually.) Here is part of the reply;
“I am sorry that you feel the autism strategy is not delivering to many families throughout Scotland. As you are aware from previous correspondence, the Scottish Government is committed to improving the lives of people with autism. We are nearly halfway through the implementation of the Scottish Strategy for autism and whilst much has been achieved, we are aware much work still needs to be done. The reframing of the strategy into an outcomes framework in 2015-2017 is designed to streamline the strategy into four key outcomes; choice and control, independence, a Healthy life and Active Citizenship. “…………….. Sad to see our ‘progressive’ government using these vague and unmeasurable terms.
Meaningless ‘care speak’ is just insulting at this stage.
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.
Lots going on this week in the quest for services, support and understanding for ASD. Some day it all needs to be documented publicly because much of what goes on is scandalous and can get me down. The brutal cuts that are coming are going to have a devastating effect on many vulnerable people who deserve so much better in a civilised society. For many families living with disability there are cuts on a number of fronts. I was informed this week that the local authority I work for will be imposing a substantial pay cut on me and many others. We will oppose these actions as vigorously as possible but last week’s election results have given something of a mandate for these types of cuts.
However there were some positives this week too. Today I found out I had scraped a pass in my second module of a post graduate certificate in autism. That’s two down one to go! Given what’s going on in our lives I was happy with the pass and the fact that my feedback stated ” The student does meet the basic criteria well and the content of the information meets the necessary standard. It is the presentation which reduces the grade of the submission.” Well I guess sometimes your presentation just goes out the window when you are an autism parent 😳
Now that the exams are over and I don’t start back till September I am looking forward to a long summer of partying 😄. Well maybe not! I remember my final exams nearly a quarter of a century ago and the crazy celebrations. Actually I don’t but I have it on good authority it was a wild night!
We also had another local autism support group this week and it is starting to take shape I feel. Slowly our numbers are building and it is great to have a chat and cuppa with other parents and carers. It is incredible the experience and knowledge that emerges at such events and I am proud to be part of it all. We hope to make a very positive contribution to the lives of those living with A.S.D.
Let me end by reflecting on and acknowledging the amazing things achieved every day by those with autism and their parents and carers. It is not always easy and the challenges are often great but the effort is easily worth it when we succeed. Whether that is securing a service or resource, overcoming a sensory or social difficulty or just getting through another day. I salute you all even if our authorities and politicians so often do not!