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.
Well it’s been a long and eventful summer holidays but we have survived! After some difficult weeks when Andy struggled with sensory issues and mood swings that we think arise from hormonal changes, he has been much more like his old self – giggly and mischievous! This week routine should be returning and although Andy does not attend school a sense of normality will hopefully help him.
At Inspired by Autism things are starting to pick up too. Today I delivered my first autism training event of the new session to the wonderful classroom assistants at Dunoon Grammar School. My input was received very positively and I learned also about their role and challenges. I hope it is the start of a productive relationship with our local high school.
It was also nice to receive some recognition from our MP and I will most certainly be thinking how we can use Brendan’s kind offer of support in the near future!
What a week the first one of the school holidays turned out to be!
Given Andy’s recent difficulties with sensory processing we had already taken the decision not to risk him handling the planned family break to a caravan, and on balance this was probably the correct choice. It is always a case of balancing what we think he would enjoy versus the challenges a new environment will bring and we always give this much thought and consideration. It was however difficult to have to split up at what should be a family time. I went with Andy’s brother and sister for the first couple of days, leaving Jen at home with Andy. His hyperactivity through the night is continuing and it is definitely better managed at home.
On the Tuesday Jen and I had been invited to the Royal Garden Party in Edinburgh and with the help of Nuala, Andy’s Carer and my brother and his family, we were able to attend. It was great to have our role as Carers and the work of Inspired by Autism recognised in this way.
Jen then spent the remainder of the week at the caravan with our other two, while I went home and looked after Andy for a few days.
While Jen and the kids had a great time away, Andy and I had a happy and eventful couple of days. Among other things we went to the supermarket where Andy had a go on a mobility scooter before purchasing a rather large Birthday cake that he devoured with the help of our Labrador, Bailey! Again my sister and her husband visited to give me a few hours off and make sure I managed to cope with the lack of sleep.
It was great to all be united again at the weekend and despite all our travels and excitement of the week I felt most contented back in our garden , enjoying the sunshine with Andy and Bailey yesterday. We had all got through the practical and emotional challenges of the last week and that was a good feeling.
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.
A year and a bit into our dog adventures as a family, I remain absolutely smitten with my love for our Labrador, Bailey. This weekend we have had my good friend Barry’s dog staying for a few nights. Skye is a beautiful wee Dalmatian cross and a sweeter wee dog you’d struggle to find.
As autism parents we have something of a stressful life and recently it has been particularly difficult for us all as Andy’s sensory processing differences continue to plague him.
For a while yesterday afternoon things really started to get to me. Like so many others, I too, am prone to bouts of anxiety and depression and yesterday the pressure and worry about Andy had me in a downward spiral. Experience teaches us though, that as George Harrison sang, all things must pass and this sentiment often helps me through this type of difficulty.
This morning I took Bailey and Skye for our usual walk in the woods behind our home. The sun streamed through the deep greens of the foliage and the woods and trails were quiet. I walked slowly but steadily and became engrossed in the surroundings and my canine companions, happily bounding around . My thoughts slowed and my anxieties dissipated as I stole an hour to myself with these beautiful dogs. My mood lifted and things seemed better as I returned to family life.
I don’t know how I managed without a dog for so long.
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 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.
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.
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.
Night 4 of Andy being unsettled. It’s got steadily worse and tonight he is currently bouncing off the walls. Notions of Christmas holidays relaxing at home seem to have evaporated before they have even begun and all of a sudden a couple of weeks is looking like a long, long time when yesterday I thought I was looking forward to it!
Here are my tips for unpaid Carers at Christmas and other holiday periods.
NEVER get seduced by thoughts of holidays and relaxing because that experience generally doesn’t exist for you. Keep your head down and your expectations set at your normal level. Avoid mainstream images of celebrations and festivities.
Do not let your guard or indeed your hair down. Stay work ready and alert at all times. Look after yourself and never make plans. Never complain it only makes you look bad and feel even worse.
Never, ever underestimate the lack of awareness or desire to even try and understand your life by the majority of those around you- particularly those who make a living from disabilities. Always be polite and remember your manners when seeking basic supports and remember despite the massive savings you make to the public purse , despite the fact you are a massive net contributor, other more able and responsible people will decide your worthiness for help.
Remember also that these very folk will avoid direct contact with people with disability at all costs and would struggle to last ‘ a shift’ doing what they demand of you everyday.
This post is dedicated to out of touch social workers, professionals, policy makers and politicians – you know who you are! Do try to open your eyes and seek some exposure to the lives of those you claim to act for.