A Carer’s Struggles!

Duncan F MacGillivray is an autism parent and social worker who felt compelled to set up an autism support charity to help the ever increasing number seeking advice and advocacy. Based in Argyll, ‘Inspired by Autism ‘ is run voluntarily in his ‘spare time’ and aims to offer independent support to the many autistic people and families who have been cast adrift by a failing support system.
In this short piece Duncan expresses his rising disillusionment at the current system and it’s treatment of those who attempt to make a stand.

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Sometimes it seems that everyone whose role can significantly impact on those living with disability, require to be rewarded in one way or another before they will act.
After another tough night as an unpaid carer this sentiment feels strong today as I begin to review some of the current cases at ‘Inspired by Autism.’

Personal and financial gain seem to dominate the goals of so many we encounter on the journey of pursuing the wellbeing of people living with autism and disability. I say this with due respect to the many poorly paid and highly motivated professionals who constantly do their best in a crumbling system.

Offers of support can often materialise as symbiotic in nature – you scratch my back , I’ll scratch yours – and that is nearly always a demoralising experience for those in need.

This week it has been an M.P. who wants his picture in the paper in return for a template letter of support to the DWP from his office staff. (Is that not their job?) Push them for a little more to try and tip the balance in favour of those barely surviving in a system with impossible odds and watch them withdraw. Challenge their party’s policy or ask them to stick their neck out and they will disappear quicker than the humanity of a newly appointed cabinet minister.

Policy makers at government and council level often need autistic people and their families to support their ideas and cost saving schemes but I have long grown wary of ‘free lunches,’ for there are none. Here the currency of choice is again career enhancing publicity backed by dodgy stats as they move on up the ladder without a glance backwards at the chaos and misery left in their wake.

The list goes on – G.P.’s wanting to charge those in poverty for endorsing a legitimate claim for benefits, councillors looking to be associated with grassroots initiatives, principally to score points from their rivals, local authorities whose reputation is the only thing that really matters.

At our charity I guarantee that the only goal and motivation is to act in the best interests of those who seek support. I will challenge and advocate for the wishes and legal entitlements of those affected by autism and disability. Our services will always be free of charge and will not be shaped by funding application’s criteria, nepotism, politics or any ulterior motives, regardless of who attempts to thwart or discredit us.
That’s a promise!

I.B.A.

Home truths.

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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.B.A.

A Fair Deal ?

imageI was talking with a fellow carer this week.  The young person she cares for has a serious illness and very complex needs and I admire her and her family greatly. Sadly our conversation inevitably drifted towards the lack of suitable support for Carers and services for those whom we care for. We agreed on the fact that much of the problem stems from the undervaluing of the Carer’s role. If somehow it could be given a higher profile in our society the understanding would surely be raised generally and momentum might build towards better supports? The worrying trend for not offering statutory assessments and services by many local authorities does the exact opposite sadly. Raising the contribution of Carers could and should be done at different levels. I have found that involving people in any aspect of the care giver’s role or even just spending some time around a family of Carers is very helpful way to increase understanding.( It also speaks volumes about the individuals in our recent experience who have sought to avoid this type of engagement.) Policy makers, council officials and senior managers perhaps prefer concepts like “best value,” “restructuring” and fancy new “initiatives”. This can be carried out safely from their Ivory Towers backed by “consultations” that could tell you that black is white. For those of us who would prefer to deal in hard facts rather than spurious interpretations I welcomed a finding reported ( though not widely) in the media this week. A study carried out by the University’s of Leeds and Sheffield in conjunction with CIRCLE ( Centre for International research on Care, Labour and Equalities) has estimated that unpaid Carers in Scotland are worth as much as £10.8 billion per year. (There was actually a fair amount of research that corroborates this type of figure when I did a little digging.) That is a serious amount of money by any means and should easily justify a sound case for proper assessments and provision of support.
It has helped me counter some of the feelings of guilt engendered by the attitude of some involved in our recent quest for fit for purpose facilities.
I.B.A.

Good and Evil!

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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.

I.B.A.

Understanding?

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.image
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.
I.B.A.

A very special birthday!

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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!
I.B.A.
Sent from my iPad

How hard will you fight for me dad ?

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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!

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.

I.B.A.
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