Parallel Universes.

Sometimes it feels that there is little left to say about our lives with autism. Perhaps in previous times, I have been too prolific in my constant thinking, reflecting, blogging and sharing of experiences. Recently I’ve had little positive to say about autism policy in Scotland. I’ve grown tired of professionals putting a positive spin on the state of play. I very rarely experience autistic people or families agreeing with those who draw a salary from the ‘autism industry’. Politicians generally have the status of snake oil salesmen for people living with autism and not without good reason sadly.
For us, we remain as anxious as ever about the future for our precious boy. In recent times we have had an unwarranted social worker allocated with no experience of autism, being ignored or passed from pillar to post by our MSPs when support has been sought and discovered just how poor CAHM’s services continue to be. A petition with a powerful message from over 2000 people affected by Autism has been buried by our Scottish Parliament who clearly doesn’t want public opinion unless it can be used for political gain.
Like so many though we just keep on doing our best to keep challenging inequality and providing support, to keep trying to raise awareness, understanding and acceptance.
Inspired by Autism had a busy and productive drop in this week. It is so therapeutic to be among people who truly understand and who are willing to offer practical and emotional support to each other.
Engaging with ‘professionals ‘ and policymakers has so often produced such disillusionment and disappointment I feel inclined to keep my distance these days.
Until there are indications of change that reflects those living with autism’s needs and wishes we will remain in parallel universes.Dad, Andy & Bailey

I.B.A.

A heavenly sound!

IMG_1003I have rarely been able to find time for writing recently due to the volume of work at Inspired by Autism but really wanted to share a beautiful and insightful interaction from last night. As most will know Andy now has a constant companion in our Labrador Bailey. Like every other facet of his life however his interactions with Bailey had reduced during the spring / summer months when he experienced a catatonic sensory breakdown. Thankfully we seemed to have moved on as the days turn autumnal.
Andy has no conventional speech although his verbalisations certainly have meaning and emotion in them. His happy contented sounds are for Jen and I probably the most uplifting sounds in our lives. Andy tends to limit these to one or two outbursts with people and then he tends to move on or away. He is so often constantly on the move!
Last night as I was attempting to get some sleep, Andy’s happy sounds could be heard. They appeared to be ongoing. A continuous mmmm and occasional aaaahhhhh!
The pitch of the sound rising and ending in whooping as he ran out of breath before starting the next. Andy was in his bedroom with Bailey and enjoying the dogs full attention and close proximity due to the large lump of homemade bread they were sharing.
Now I realise this might all sound a bit strange to those not in our position but this is Andy’s voice, his happy, contented child voice. It is a sound that for us is simply the best sound in our world!

I.B.A.

Keep the faith!

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This past few days and weeks at Inspired by Autism have produced some of the most disappointing situations and responses to these situations, that I can remember.
Across a range of disabilities, situations and age ranges the one constant has been the fact that all responses have been simply from a resource / service perspective. The system is broken and even the pretence of meeting needs seems to have vanished. The systems are bursting with insulting and poorly thought out ‘ strategies ‘ that deliver nothing beyond their fancy names. Over paid professionals play the game and take the money from the public purse without a care.
Our local government structure is broken also and even the well meaning who want to serve their electorate are powerless due to unholy and political alliances.
It also appears that our government have quietly decided to scrap the Carers Parliament- not the best forum admittedly- but a small token of recognition , a day for Carers to experience a little of the life and perks that our MSP’s and FM have every day.
These events and facts lay me low. I fight these battles for those with no voice, driven by a hope of finding some justice, some small improvements. If I lose hope however, what message does that send to our families? So I must keep the faith but my faith is not in local authorities, councils, policy makers or politicians. No, my faith is in the commitment and resilience, dedication and love that unpaid Carers, spouses and parents show every day of their journeys.

I.B.A.

Carer’s week.

Carer’s week.

I’ve been trying to comment on this annual phenomenon all week but have simply been too busy being a Carer. So before it’s shoved on the shelf for another year by those who have enough time and energy to celebrate it, perhaps I can make one or two observations? Ask a few straightforward questions?
Why are proper and legal Carer’s assessments so rarely carried out AND delivered on by local authorities?

Will the (delayed) Carer’s Act actually be robust enough to deliver any real change for those in the Carer’s role?

Will proper emergency and future plans be put in place with this Act?

Will adequate respite services be promoted, extended and provided to give every Carer a chance to recharge even once a month?

Everything else is window dressing and insult to a group of people who save the public purse an estimated £10.8 billion per year.

I.B.A.

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Partial Awakenings.

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Andy’s period of hibernation from the world has largely continued this week. He has been mostly still confined to his room or on an odd occasion ventured downstairs.
The best it got was a late evening of hyperactivity where he made it into the garden. It was something of a false dawn ( or dusk !) however as he resorted to type the following day. It was a lovely sight though to see him burst into the garden and reconnect with the outside world with excited stims. (See pic!)
One of the problems seems to be the interaction between Andy’s various autistic traits. Like a domino effect the hyper sensitivity to bright light, that confines him to his darkened room, eventually becomes the routine. The need for repetition and rigidity then conspires to make this the ‘ norm’. The same way this rigidity can be utilised in a positive way to reinforce helpful routines around everyday activities e.g. Personal care, it can also trap Andy in less positive situations.
We will keep observing, supporting, loving and encouraging Andy, but it is taking time that the outside world often fails to understand and accept.

I.B.A.

Trapped in a sense.

IMG_1744Andy is having a bit of a miserable time just now. Once again it appears that his sensory processing differences and the bright weather we are experiencing are combining badly for him.
For nearly a fortnight he has been largely confined to the perceived safety of his bedroom, eyes crinkled against the light, wrapped in a duvet. The few times we have been out it has been like smuggling a hostage out, with hoods up and blankets over his head.
Of course Andy cannot tell us , so as always we are making educated guesses, while monitoring him closely. He has not been eating much though has been drinking, but even making his way to the bathroom in his own home, is appearing to be a challenge for him. This ‘ micro transitioning ‘ from one environment to another makes life very difficult. Getting in and out of the car or buildings or into the garden can all prove highly challenging. The unpredictability of it all makes plans virtually impossible.
I love my precious boy with every ounce of my being, but seeing him like this is awful. It’s also why I would take this aspect of his autism away in a heartbeat if I could.
I.B.A.

Inspired by Autism

IMG_1741I am happy to be able to announce that Inspired by Autism officially received charitable status this week. I have now been going for almost 4 years and have been continuously exploring how I can be most effective and best continue to contribute to making improvements for autistic people and their families. There have been lots of challenges and highs and lows but I am very driven to keep going. Charitable status feels correct as this was never about being a business in the obvious sense of the word. To maintain a truly independent perspective that ALWAYS puts the wellbeing and interests of autistic people first is the most important principle at Inspired by Autism. I will NEVER compromise that for funding or status from those in power.
Thank you for your ongoing support.

Inspired by Autism’s charitable objects are:
– the relief of those in need by reason of age, ill-health, disability, financial hardship or other disadvantage
The company’s objects are the relief of need through:
• Raising awareness of autism spectrum disorders, challenging discrimination and providing peer support groups for parents and families with children on the autistic spectrum;
• Influencing policy and providing independent advocacy and advice, acting as a voice for families at local and national level; and
• Providing autism awareness training to businesses and professionals.

I.B.A.

An uncertain future.

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Many years ago when I decided to go into social work, I did so with a very genuine , if naive, desire to help people and genuinely make a difference. While proud of some bits of work I have delivered, overall social work has been a disappointment as a career choice much of the time. The changes in the role, due largely to resource driven policies, have in my opinion led to there being very few opportunities for using individual assessment skills, initiative or integrity.
Instead rules and processes, weakly hidden behind promising sounding jargon, are the cornerstone of a failed and broken system. Local authorities are allowed to ignore or re interpret legislation without challenges and new policy is written in the new meaningless language of the day.
While hugely frustrating much of the time , it is at least liberating to be able to social work from the heart in my role at Inspired by Autism. It feels right finally and it is a privilege to work from the perspective that puts autistic people and their interests first. I have come to realise that fighting for even small improvements for autistic children like my precious boy is worth more than any attempts at career advancement or increases in salary.
Perhaps someday mainstream policy and procedures will rediscover what should be their prime purpose.

I.B.A.

IMG_1708 Some weeks the up and down nature of life as an autism parent leaves you feeling a little drained.
The week started with a follow up meeting to a complaint about desperately poor practice that affected my precious boy and my disappointment at realising that what was considered unacceptable previously is now become just the way it is. Suck it up innocent young people with disabilities your life chances just got fewer because things are getting so bad that we have changed the goalposts again.
My involvement in the local health care policy forum saw me attend a meeting that was considered positive by some, but involved more talk of cuts in budget and provision. We are fighting not for the services, but rather the right to simply have our views heard.
The local initiative for autism services has resorted to type as the ineffectual private members entity it previously was.
Finally our failing education system sticks with the ‘ every thing is fine here’ mantra.
The daily struggle of supporting Andy bookends every encounter with authority and I’m tired of the dishonesty that affects my precious boy and so many others like him.
I.B.A.

Little sign of progress.

Feeling quite disappointed and disillusioned with the Autism Strategy in Argyll. Today’s meeting was cancelled and they have not met since November. The next meeting is the end of March. A year ago they relaunched the strategy with promises of real action. Nationally we were 5 years into a 10 year strategy. The Scottish Government then decided to reframe the goals ( that they had failed to achieve) into very vague outcomes. So far it has produced another written plan and well nothing really. Taking a four month break sends out all the wrong messages to people living with autism regardless of the reasons.
Today an advert for this event by Autism Network Scotland has been circulated. The people at ANS are very good people and in my opinion very knowledgeable people. It is extremely difficult to cater for the geographic challenges of Argyll and the limitations and lack of freedom that people living with autism experience but for most people from Dunoon – apart from the professionals- this event is almost impossible to participate in. With respect to make the sacrifices in cost, time and organisation to attend this event to be told about national ” progress ” that has failed to impact on our lives here in Argyll along with spin about the ” progress ” locally, that NONE of us have experienced is a big ask. While I don’t have the answers I could and previously have stated goals that would be meaningful and life changing for those living with autism in Argyll but I feel I am wasting my breath much of the time.
I have tried to be constructive and I have tried to participate and contribute while being heavily involved in caring for my precious boy, trying to help others and hold down a day job.
My offers of input to training staff have been rejected by our authority’s education department and I am tired and very disillusioned with the situation.
It would be much easier just to play along and say positive, nice things about these matters but this is not just a job for me. This is our lives and the life of my precious son and so many others like him. I implore you to interpret these comments in that spirit. I beg for no more ” window dressing” but rather real , if modest improvements that can be experienced by those affected in the short term who have waited so long.
No offence is meant but nationally and particularly locally here in Argyll the Autism Strategy is still failing to deliver.

I.B.A.