“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!
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.
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.
People on the payroll often seem to be much more comfortable and understanding about the front line cuts, waiting lists, poor and shoddy services endured by people with disabilities and their families -go figure!
I have come to the firm conclusion that there is no substitute for personal involvement to engender a position of true understanding or empathy. I watch people glaze over if I go on too much about the injustices displayed towards the vulnerable in our society. A work colleague who talks the talk regarding equality issues recently began yawning in my face after asking about my disabled son. Many of the “professionals” that we have encountered thus far on our journey come with baggage in the form of thinly disguised contempt for the position of the clients they are paid handsomely to serve. They are non committal about massive deficits in service – I know, it’s called being professional – and are economic with the truth. Defending the indefensible in my opinion does more harm than good to our society however I guess it depends on who you see as the important people in the system. Far too often professionals are looking upwards on the ever popular hierarchical models that local authorities seem to like so much instead of across the table at the people services are supposed to be about.
Recently I have been having extra correspondence with several agencies involved in providing services to my children. I regularly have to advocate on behalf of Andy to try and secure very basic resources and services for him. It is not something I particularly want to spend my precious down time on but I often feel I have no choice in the matter.
My commitment to my kids and Andy in particular, given his needs and vulnerability, will just not let me do anything else. I have to strive for the very best I can for him.
This week I had been having something of a crisis of confidence such is the lack of interest and support from some quarters for actually caring about services and how families living with disability are treated. The more I considered it though and spent time either with Andy or reflecting on his needs afterwards the more my resolve strengthened. I am determined to keep challenging poor service and inequality. I will not be put off by insulting behaviour, posturing and half truths. Through our new parent support group we are seeking seats at the committee tables where the voice of our children will be heard. We will be engaging with other advocacy groups and projects and asking questions. We will be spreading sound information about legal entitlements and how to challenge decisions. Our precious children deserve nothing less.
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.
This Charming Man!
In the interests of balance I thought I would relate another wee tale from our break in Crieff last week. We may have had to endure some subtle discrimination in the Co-op but I am not suggesting for one moment that this was typical of this beautiful town. There are small minded people everywhere! I have spoken before about the wonderful kid’s park and cafe in Crieff. My kids all love it and if the weather allows we always visit it. (If you are in Crieff with kids you have to go!) We were there a few times last week and back at our cottage I had mentioned to Jen that the guy in the cafe “got it” regarding Andy’s autism. As a parent you tend to be receptive to these things and when someone takes the time and effort to engage with Andy I am always impressed. I had entered the cafe behind my precious boy as he explored the place. This involved circling the outside of the building and touching the walls and trying the side doors before finally entering. The mapping of the cafe continued as he walked around inside touching walls and tables before touching and licking the glass display cabinet. The man that ran the cafe was busy stocking the ice cream cabinet and as I tried to direct Andy to indicate what he would like I was immediately aware of a calm and relaxed attitude in the place. Andy started raking his way through the ice cream cabinet with no regard for the man. Again there was no problem only understanding shown to my son. When he selected an ice cream the cafe owner engaged Andy on his own terms giving him time and space and using simple clear language. He never forced eye contact. He used Andy’s name (overheard from me) and the double high five gesture that Andy uses to confirm his choices. This short interaction illustrated perfectly how an open and unthreatening approach to communicating with Andy can make a connection with him. On the final day we were again at the park with Andy. He took us in to the cafe again no doubt encouraged by his treatment the previous day, as well as the ice cream! We got talking to the kind man again and he told us that his son was also autistic. We shared experiences for a bit and I happened to mention Andy’s fascination with the receipt machine that had caused all the nasty stares and comment in the Co-op. As we were leaving the cafe owner invited Andy up to have a look at his till. Andy was a little unsure at first but when he realised he was allowed to press the button and produce a receipt he was over the moon. The man carefully and gently showed him what button to press and what ones not to! Andy related to this kind man who had made the effort to engage with him in an activity interesting to him. Andy had several goes and stimmed away excitedly. After a hard week it was a small but lovely moment for us as parents. It was also a reminder on how to engage with Andy appropriately and meaningfully. Thank you.