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.
Andy 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 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.
My autistic son Andy is 10 years old and is non verbal. My wife had been suggesting a dog in our home would have lots of benefits, not only for Andy but for the whole family. We also have a 12 year old son and a 9 year old daughter.
We investigated the possibility of a specially trained autism support dog but found this to be almost impossible to obtain here in Scotland. To be honest I had concerns about the whole idea. What if it didn’t work out? What about the mess and extra work? I am happy to admit that much of the time I was coming from the perspective of a stressed out and tired parent/ Carer. Each stage in supporting Andy had been a real challenge and we had just emerged from an ultimately successful but exhausting toilet training period.
Andy’s Carer had introduced Andy to her retriever and under her supervision he had made progress. From being initially very unsure he was now comfortable around this large dog and he and his Carer had started walking with the retriever. With great patience, Andy was making progress and the social and physical benefits to him were starting to emerge.
Despite my pessimism my wife began making plans and researching about which dog might be best for our family. Together with Andy’s Carer and her dog the transition work began. A large cuddly toy dog arrived in our home with a bed , food and water bowls and a lead. Andy’s Carer’s dog became a regular visitor and accompanied them on outings and walks.
Jenny’s research had pointed to a Labrador and she had located a couple of possibilities. Again, I moaned about more toilet training that a puppy would require and remained unsure generally.
A reputable breeder emerged and Jen was particularly keen due to the fact that the household was one with several young children in it. This she hoped would help the pups be used to having noisy and unpredictable young children around. Jenny discussed this with the mum in the breeder family and she was very receptive to this. She prompted her kids to stim around the puppy, explaining the purpose to her own kids.
Andy’s Carer continued the transition work , modelling life with a dog using the toy dog and of course her own retriever. Social stories with lots of pictures were used with Andy. A safe space for the dog to have his sleep was emphasised with Andy, using do not disturb pictorial signs.
Jen visited the breeder , met the pregnant bitch and had more discussions. We paid a deposit and it all became very real, especially for me. The doubts I harboured made a last ditch and concerted effort. Jen stood firm.
A healthy litter of half a dozen pups arrived and soon after Jen and Andy’s Carer went to visit. They selected our dog as one that appeared particularly relaxed about being handled. Oh and he was the cutest! (They were all cute ) The mum at the breeders agreed to keep our pup a week or so longer than the normal weaning period to fit in with our plans around a short break. This would then allow us a long and uninterrupted settling in period at home.
We visited the breeder’s home with Andy and the other kids, but Andy refused to get out of the car. This is not uncommon with Andy who struggles greatly with new places and situations. We decided not to force the issue in any way to avoid any negative feelings related to our new arrival.
We all redoubled our efforts in the final lead up period, talking about the new pup and using the cuddly toy dog to model the events that were to unfold. We settled on a name – Bailey- as Andy , though non verbal could produce a B sound. We also liked the name!
The day finally came and Bailey arrived. We did our best to contain the excitement and all behave as normally as possible. Bailey won our hearts immediately. He was gentle but playful. We attempted to let Andy and Bailey interact on their own terms – slowly, cautiously checking each other out. It was a slow burner but all positive and that was fine by us. Bailey was and still is a very quiet dog , who very rarely barks and this certainly helped. Andy’s habit of carrying finger food around with him also helped their early bonding! They began sharing space and experiences more and more.
Andy appeared to really enjoy this engagement that did not involve uncomfortable social intrusion like eye contact and overwhelming questions or demands. Bailey took the spotlight from Andy and that was very agreeable to him. Another major characteristic of their engagement was humour. Andy found Bailey very amusing and still does to this day. He is open to interactions with Bailey at all times, even when waking up. They hang out together during the day. They cuddle up in the evenings. They go in the car together. They are quite simply best friends.
Oh and guess what? Bailey has changed my life. I walk him most days and miss him when away at work. He sleeps on our bed and he makes our whole family complete.
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.
A beautiful family day in the sun at Sense Scotland’s Caravan in Roseneath, was a great way to spend World Autism Awareness Day. I spend every day trying to raise awareness and acceptance in some form or other but today we just enjoyed a lovely day.
Autism of course is everyday not just one.
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.
Jen and I have just returned from a short break with David and Helen. This trip however marked several milestones.
It was the first time we had went over seas leaving our precious boy at home in Scotland. We spent 4 nights in Germany at my best friend’s home. It was a challenge for all of us and had been a long time in coming. As a family we have arrived at this point through a slow and careful process of Andy becoming more and more comfortable at respite and of us being able to overcome our anxieties and build trust in our Carers. Dealing with our emotions, our guilt, sadness and anxieties and recognising our responsibility to give Helen and David new and exciting experiences takes time and effort. They finally got to fly in an aeroplane and go to Europe. Andy was happy and relaxed at respite. Our Carers stepped up to the challenge too, and kept Andy safe and happy.
Jen and I are immensely grateful to everyone who helped make this happen.
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.