The Bailey Record- July 2016

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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.
I.B.A.

A Family Outing.

imageA 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.
I.B.A.

Another long night.

imageIt 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.

I.B.A.

Love over Fear.

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An early post today and a plea to consider the future well being of the vulnerable in our society. Those who are at the mercy of state funded support and services and do not have a voice to speak up for themselves are at a pivotal point for their future wellbeing. As a civilised and decent society we are at a similar junction. This is an issue that will affect and touch every life and every family, with the exception of those with extreme wealth, at some point now or in future. Robust human rights protection is needed more now than ever. As the gap between those who have and have not grows the most vulnerable need the safety net of a welfare state and NHS more than ever. This support has never been at more risk and already the cuts are brutal and real.
Without a legal protection and accountability this situation is set to become so much worse. Someday the health and wellbeing of us all will wane and despite seeming distant now it is almost certain we will require these very supports. This help is the very essence of humanity and if removed through greed, hate and discrimination we will have lost our very soul.
Please consider prioritising all our human rights today.

I.B.A.

A Deeper Love!

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It’s the thing that drives me most and yet conversely can be my Achilles Heel. The intense love and desire to nurture, protect and advocate for a child with a disability can be something of a double edged sword. A couple of times recently while on duty giving autism presentations I have experienced a little of the raw emotion that can so affect my functioning. Hearing the first person account of a wonderful autistic woman provided an insight into some of the challenges in the life of an autistic child. It was a chance to catch a glimpse of the experiences usually masked by the limitations of autism and as such I was spell bound. I was also trying hard to hold my feelings together. The chance to gain a degree of this type of understanding is so very valuable. To hear it first hand can evoke powerful emotions. The price of feeling a little wobbly was on reflection worth paying.
These emotions, whether triggered intentionally or not can be a great disadvantage in formal care reviews for parents and carers and is something that requires to be acknowledged and avoided where possible. Whether it be losing your temper, becoming upset or simply being intensely uncomfortable showing vulnerability in the headlights of a gathering of professionals it is one of the most common difficulties faced by parents and carers. It is a structural inequality in a system set up for professionals by professionals.

This week I have upgraded my page into more of a website.(inspiredbyautism.org) I have started to include further information that I hope is helpful. Under the Carer’s Resources menu you will find some tips for negotiating reviews. Stay strong and remember that displays of emotion arise from your deep love and care.

I.B.A.

You Got to have Faith!

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In my frequent discussions regarding all things autism I hear lots and lots of vague, unhelpful and ambiguous language that does nothing to forward either awareness or the rights of those living with autism. My dislike of ” care speak” has been well documented in my blogs. This type of language is not just disrespectful in its meaninglessness and ambiguity, it could also be considered to be quite calculated to fit in with a duplicitous agenda that is about being seen to make improvements as budgets are cut. Anyone who has been around disability and social care for any length of time will have numerous examples sadly.
Now and then I hear very accurate language from switched on individuals. You see good communication is straightforward and very simple. There is no need to use the cosy sound bites and concepts, complicated acronyms and jargon loved by councils and health boards or HSCP’s as they are known by those who like this sort of thing. This leads me on to one of the turns of phrase I liked from a man with high functioning autism who was addressing a gathering heavy on professionals. He referred to his audience and many around him as the “autism industry.” I think this needs no further comment because it’s clear and plain. Blunt even? The other phrase that has kept coming into my head in my autism work this week was the concept of whether someone is a believer or a non believer when it comes to ASD. Let’s just say my work here is not yet done. Sadly people ( even those in the industry )often have to see something to believe it.

I.B.A.

A New Addition

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A short and cuddly blog this week to welcome Bailey our new Golden Labrador pup who came to stay with us on Tuesday. As well as a family pet we are hoping that his presence will be positive for Andy.
Andy has been a little bemused thus far and it has created a welcome distraction from his recent frustrations. He has had a wee pat and is certainly watching as events unravel for Bailey in his new home.
Before settling for bed last Andy came through to our room where Bailey is sleeping in a small crate on the floor. He had a quick look before returning to his own bed and repeated this a few times over the next half hour or so.

When reflecting on events on my way to work today I realised that Andy seems quite content about our new addition. I feel he has almost been showing relief at not been the focus of attention for a change. He has always been quite observant and this watching role is perhaps taking some degree of pressure off him socially.
Andy seems happy enough to share the garden space and his home with wee Bailey. We hope it will be a relationship that will blossom and be mutually beneficial to their future development.

I.B.A.

Pledges and Waffle.

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As the election approaches and I start to look around at what is out there to tempt voters into putting their cross in the box there is realistically very little choice for me.
Social justice and disability issues are as always the most important issues for me but for “democracy” to work best I would like a bit more choice. Election time is when political parties have to try a little harder normally and there exists at least the possibility of voters trying to influence policy through getting pledges made in public.
This time round we are in a very unusual position in Scotland where there is no real possibility of a change of government and that leaves very little chance of any pledges being made publicly or otherwise beyond their safe manifesto.
The pledge I make to my voiceless, precious boy and others like him is to speak up for him and to challenge (failing) policies. To seek fairness for him and never ever allow his needs to be overlooked. I have been working every hour I possibly can to further these goals, sadly without success.
Here are some conclusions I have arrived at through my representations for Andy and people with autism.

Being better than the rest doesn’t make you great but politics is not about being great, it’s about winning and retaining power.

Honest politics. This is an oxymoron.

Conviction politicians are a rare breed.

Professional politicians are 10 a penny.

The hopes and needs of a minority or vulnerable group depending solely on one party is a risky strategy.

If you ask searching questions don’t expect a straight answer (duh!)

Take NOTHING at face value from any politician.

Finally it’s a brutal business where survival of the fittest and strongest wins out.
It could not be further removed from the beauty, innocence and honesty of my precious boy.
Vive la revolution!

I.B.A.

Disillusionment.

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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.B.A.

For all of our languages, we can’t communicate.

IMG_0520 I attended an interesting course this week run by Sense Scotland. It was another approach to the pictorial communication systems often favoured for communicating with non verbal people on the autistic spectrum. For me it was good from a few different perspectives. This particular system was set up as a social enterprise and appears to have found a level of success. Secondly I could see the possible benefits and strengths of this system. It appeared fairly straightforward and simple and that is always a good thing. Whether Andy would use it or not I am not entirely sure but we will certainly explore it. Like most of the other systems I have looked at I think there may be aspects of it that could be useful for Andy.
The day before I had visited a school for children with disabilities where I noticed evidence of several different communication systems around the place. I observed some lovely interactions but also it has to be said I observed some more complex communications. They were characterised by children displaying not particularly “challenging” behaviour but rather behaviour that signalled they did not wish to conform at that time and in the way expected. The staff all seemed very good at attempting to manage the children in an appropriate fashion. For a school to function in its primary objective of education of large groups of children there must be rules and systems I realise.
As a parent I always tend to think why is Andy dong this? He can’t speak but he is communicating his wishes and needs constantly but to truly understand his behaviour it is crucial to set it within his very different and I believe very complex world. Without a cultural context communication can be problematic. That is why I believe that some understanding of an individual’s autism and arising behaviours is so very important. Without knowledge of autistic people’s way of being it does not matter how many languages or systems we develop. We have to observe, learn, be aware of different ways of being and show a level of acceptance before we can communicate in a respectful and meaningful way with people who have autism.

I.B.A.