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!
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.
My second son Andy was born in 2006 in Paisley. He was a beautiful wee red headed boy who from an early stage bonded strongly with me. Like all parents I was so proud of him and pledged that I would always do everything I could to cherish, love and support him. I have tried to do this for my three beautiful children but for Andy the challenges have been that bit greater. In 2009 he was diagnosed with childhood autism and a globalised developmental delay after missing crucial milestones. Although not a huge surprise the confirmation was upsetting. As a family we regrouped after the diagnosis however and came to realise that in some ways nothing had changed. Andy was still Andy, still our son and still loved with all our hearts. Andy just required more help and support. He didn’t sleep well. He was a fussy eater. He required very close supervision. He could not talk. His frustrations became the family’s frustrations. His sleepless nights became ours. The care needs were more demanding than with our first child, who was now an infant with his own demands. Oh and we had a beautiful baby girl too!
We engaged with various professionals regarding Andy’s needs. Some were great and sadly some were not. We became aware of the limitations of living in a small and relatively isolated town. Essential specialist services were limited due to geography and limited budgets. There was a lack of understanding of A.S.D. generally and specifically.
Statutory support services required to be pursued. The complexity of Andy’s condition often made us feel like over fussy parents when we pursued support. Resources seemed hidden away behind an overgrown jungle of red tape, rules, assessments and waiting lists. We felt judged as parents rather than supported as carers. Throughout this difficult time I remembered my pledge to Andy and kept going. My wife and I became stressed and exhausted as we struggled to provide care for all our children while attempting to secure vital resources for Andy. We faced up to the need for respite, pursued and fought hard to achieve a basic service and went through the emotional agony of preparing our son and ourselves for letting him go to allow us to survive. Our health suffered, our esteem plummeted, we faced almost constant conflict with officialdom. We became tired beyond anything previously experienced, depressed and isolated. We stuck with it though – not because we are special or super human! – but because you have to. Gradually things have slowly improved to a level that is by no means perfect but usually manageable. Good things happen on our journey and we have learned about the nature of autism, services and surviving in a small and remote town. We are hopefully getting close now to finally achieving essential adaptations to our home environment that will help us care more adequately for all our children.
Andy has made some great leaps and overall I believe that all the effort put in and support provided has brought us to a position that has maximised his overall wellbeing and happiness to this point in his young life.
I attended a workshop this week on the topic of emergency planning for the care of my precious boy. This was part of a Scottish Government initiative being piloted by Enable Scotland and will hopefully be part of the forthcoming Carer’s Bill.
Although we were focussing on emergency situations, a broader dimension of future planning is also being considered. The workshop was very thought provoking and as an autism parent I welcome the whole idea, although for us and many like us the future can be a disturbing prospect. Contingency planning has become part of our lives on a day to day basis and I would say helps considerably but A.S.D. still has the capacity to throw up unforeseen challenges. Things are seldom dull!
The trainer mentioned a pivotal moment for her when an elderly carer had remarked that she often felt it would be better if her loved one died the day before her. Sadly that sentiment resonates with many carer’s. It raises the question I have contemplated often – who would care for Andy like we would? This whole issue is compounded by the difficult times we live in and the ideologies imposed on us by governments and media. My son’s future in the hands of the current Westminster administration fills me with dread frankly. When I have the energy and will to face our future I often prefer to see it through the fantasy of becoming wealthy. The other thoughts are often about the horror of my precious boy ending up drugged in some medical unit. The latter gives me all the encouragement I need to keep fighting for his rights and wellbeing.
So yes indeed I am very much in favour of having planning discussions now while I am fit and able. Frankly I hope vital services like social work and education will engage in this type of process but the signs have not been encouraging thus far in our journey.
A statutory obligation will be needed I fear to even bring some to the table. There are none so blind as those who will not see – for whatever reason!
The complex care needs of so many vulnerable groups is so often underplayed. The value and worth of the carer’s contribution to society is often both taken for granted and undervalued. And yes a plan is only that but at least it allows the will of carer’s and family to be recorded and a process where some of our fears might be addressed. For me personally it would help enormously.
Parents’ love for their children evoke the most powerful of emotions both positive and negative. Children with special needs can engender even stronger emotions I think.
While I certainly do love all my children equally my instincts towards Andy’s needs are heightened simply because that is the way things have to be most of the time at least. To use a football analogy ” I kick every ball with him.” I strongly identify with every one of his experiences – good or bad. I worry about how he experiences every aspect of his life and I strive with all my heart and mind to understand and facilitate his wellbeing.
Recently we have experienced extremes – great understanding and support and sadly treatment that falls beneath an acceptable standard.
Positives have been the beautiful responses recently from staff at our favourite leisure centre at Hunter’s Quay, (each and everyone of you lovely people in the cafe, on reception and at the pool) Coast Coffee where Andy loves to get a banana milkshake – Jamie, Martin and Jessica thank you- and the wonderful Christine at the local Co op -always helping out and so kind! And so many others that just make life that bit better, thank you all! In treating our precious son with such understanding and respect you encourage us in a journey that is never easy!
Where things have not been so good I will not name and shame here but hope that by pursuing an agenda of advocacy for Andy and promoting awareness and acceptance of A.S.D. improvements will happen. I hope also you will understand why we require to stand up for our vulnerable child, who is without a voice.
To those involved in enforcing an austerity agenda on people whose life is dominated by disability and who fail to recognise or attempt to understand the worth of those with disabilities and their carer’s ; to those who act in bad faith and without a democratic right to do so, who protect the powerful and ensure our society is rife with injustice and inequality ; I truly believe you are heartless, inhumane and evil.
After a busy weekend Jen and I were looking forward to the start of the week.
Andy was going out with his carer to swim and our other two were back at school. The possibility of “me time” dissipated before our eyes however as we turned ourselves to paper work relating to various aspects of Andy’s care. This is another major role demanded of carers and it can be difficult on various levels. While Jen worked on checking schedules and details for adaptations to our home to ensure this project progresses I tackled the Blue Badge Renewal and the Direct Payments Audit.
The form for the Blue Badge stretched to the best part of 30 pages and what should have been a simple renewal started to get complicated. With Andy’s lifelong disability it should be recognised that the need for this resource is ongoing but because the form takes no account of cognitive disability and the difficulties and dangers arising I had to wade through a largely irrelevant assessment form. The only contact details on the renewal letter was for the council call centre where calls are filtered by people without any knowledge of the process. I had to visit our local council offices for the form because autism is not recognised as a condition that the Blue Badge can be automatically renewed online for. I persevered and completed the form as best I could and take it back to the office. The woman there was sympathetic but bound by rules that are aimed at “tightening up” the process. How recent is the photograph? How do we know Andy stays at that address? I ended up feeling the need to explain a bit about autism to the now busy waiting room. The morning ticked on. It costs £20 to apply for a Blue Badge – admin costs apparently. I made a third trip to the office with a letter to prove that Andy stays with us. We need the Badge to give us better odds on successfully keeping our precious boy safe from road traffic – a deadly threat that he has no inclination of. I submitted the form that cannot be looked at before Thursday because of another rule stating that the application cannot be made earlier than 8 weeks before the expiry of the old one. A reassessment might take 8 weeks the guidance notes inform me. Not much room for slip ups. I hope nobody is off sick or on holiday. It’s taken most of my morning to get this far.
Over lunchtime I began to tackle the Direct Payment Audit. This involves accounting for every penny that is provided to assist with Andy’s care. We are allocated 14 hours per week and this facilitates a break for a few hours a few days a week to let us catch up with the ever present laundry, housework, garden, shopping and well application forms and audits too I guess. There is no suitable school provision for Andy in our town and so these few hours are our only down time from the care role during the week and we could use them many times over. I have a new bike to put together for my other son and a trampoline to assemble for the garden that all our kids want to use. Hopefully I will get to these tasks before the summer’s past but my fishing tackle will spend yet another year in the loft.
Andy was 9 last Friday and although normally birthdays are times of celebration for families of children with a disability it can be a bitter sweet time. It can bring home the impact of developmental delay and often leads to making comparisons with other children. It is very difficult to buy presents for a child with no conventional interest in material things. Jen and I are getting better in this regard however and do our best to see things in context.
This year was possibly the best birthday yet thanks to Jen’s careful planning and the kindness of so many family and local people. As a parent you just want to give your child extra happiness and love on their birthday and we are no different in that respect. For the first time we invited some of Andy’s friends to our wee gathering and it went really well. Andy was so pleased to see his friends as well as family and Jen was a relieved mum having put so much into it. The fear of no one making an appearance is a very real concern for autism families. Deficits in social skills can make it so very difficult for children with autism to make friends.
On Andy’s birthday itself I had the day off work and got to spend the day with Andy Jenny and my mum also. I prefer to keep things simple and familiar for Andy on special days as it increases the chances of avoiding difficulties. We had a lovely day playing with Andy in the garden on his swing and gently exploring his gifts at his own pace. In the afternoon we visited Benmore Gardens cafe for juice and coffees and cakes. Andy did really well and when the manager discovered it was our special boy’s birthday she presented him with a gift! It really was a lovely touch and makes us all feel accepted in one of Andy’s favourite places. We drove home in good spirits and on arrival discovered Sergeant John Forrest of Dunoon Police at our front door. As soon as Andy saw him he became very animated, waving his hands in excitement. Sergeant John had come by to wish his number one fan Happy Birthday. Andy got out the car and greeted Sergeant John by smiling and tapping at his radio and vest and Police hat. Sergeant John presented Andy with a card from all the Police Officers at the station. Then he asked Andy if he would like to see the Police car. I have rarely saw my precious boy so excited as he climbed straight in to have a look around the Police car. When Andy eventually let Sergeant John get back to his duties we were all feeling great. Andy rounded off his day enjoying some water play with the hose in the back garden . Later as we reflected on the events of the day I realised that not only had the kind folk of our town made Andy’s day a memorable one, they had also left his parents feeling a lot better about a birthday with autism.
We are looking forward to next year already!
Sent from my iPad
Every time I see Andy struggle or when people don’t listen or respond to his needs I hear this question coming from his mouth.
How hard will you fight for me dad?
With every ounce of my being son,
I’ll question everything that is not right.
I’ll challenge the cuts and campaign for you.
On your behalf I will seek support and services.
Friends and family I will ask to help,
On authorities I will make demands.
To get supports and improve your life
And make it the best I possibly can.
I will strive to understand your needs,
To become well informed and able.
Attempt to raise others’ awareness,
And make your world a better place.
Get to know how the systems work,
And how to get your voice heard.
I will give up other things for you,
And try not to moan too much about it.
When you are failed I will raise the issue,
Challenge and complain on your behalf.
Those awkward moments I will meet for you,
And take the consequences they bring.
I will care for you, look after you, appreciate you,
Especially when things get tough.
And when my body gets too old I’ll use my wits
To make the best case for you I can,
And to secure the best life for you my son,
Because you deserve that precious boy.
Not excuses, half measures and lies.
I promise to give you everything and more.
And when my light is fading I’ll plan
To make provision and ensure you have someone there
Making sure you are content and safe and happy.
That is how hard I’ll fight son,
I hope it is enough to give you the life you deserve.