Andy is growing into a young man. He is almost as big as me and soon will tower over me. Although he is learning to cope with the world around him a little better at times, he still exhibits many characteristics associated with his autism. He always will.
Severe hyperactivity and sensory processing differences can be more noticeable when they are affecting a grown up person. Repetitive behaviours and the need for unusual routines can be less accepted when a person is bigger and louder.
Andy will require a lifetime of support from his family and carers. He will also require a lifetime of understanding and acceptance from his community.
I am so incredibly lucky to have this boy in my life. I love him with all my heart!
Charity Bake off at SGE Esplanade Hotel raises £265 for Inspired by Autism!
Last Sunday we had a wonderful day at the Inspired by Autism Bake off event that took place at SGE Esplanade Hotel in Dunoon. Rebecca MacRaild, the hotel’s events manager and a parent at Inspired by Autism came up with the idea and used her talents and contacts to set up this fun charity event.
The day featured competition in several categories that produced an enthusiastic response from the areas gifted bakers with a truly fantastic array of scrumptious cakes. Professional bakers Yolanda and Helena needed all their experience to pick the winning entries in a competition of a very high standard. Many local crafters also attended paying a donation to have a table on the day. We had live music, an exciting raffle, delicious sandwiches and nibbles and a chance to sample those cakes after the judging !
For my part I was able to talk to people about autism and the support services we provide and to eat a fair amount of cake also!
It was a real family day and my precious boy made an appearance which was for me ‘the icing on the cake!’ Sorry!
Massive thanks to SGE Esplanade Hotel, Rebecca, our lovely judges, the crafters, Tim , David, Poppy and all our winners, musician, hotel staff and especially the bakers and all who attended and contributed to such a great event.
As a charity Inspired by Autism relies on donations to cover our overheads. Over the years people have been very supportive of the work we do and services we provide.
It is of great importance when providing advocacy that the organisation remains independent of potential funders agendas. At Inspired by Autism maximising the wellbeing of autistic people and families will always be the priority.
When Dylan sang about the murder of Hattie Carroll he ridiculed the idea that the ‘ladder of law has no top or no bottom ‘. It’s a powerful and moving song that challenges the inequities in the American justice system in the 1960’s.
Listening to a lawyer talk about present day Scottish legislation affecting children with disabilities at recent training events it struck me how little our modern Acts and legal system has improved. Inequality is sadly still very prevalent despite promising terminology. Furthermore our contemporary Scottish Acts have ‘no bottom ‘ in the sense that they are weak and are largely not enforceable by ordinary families. Dip into the Education (ASL) Act, the Equality Act or the Regulation of Care Act and see how far you get against the ‘ big fish.’ Terminology is often almost impossibly vague and when challenges are mounted local authorities and health boards have the legal resources to bankrupt most individuals who would put up a fight. No wonder they thumb their nose at ‘statutory’ obligations !
Pursuing ‘statutory ‘ entitlement is so often a highly complex, emotionally challenging and draining system for families living with disabilities. It brings ridicule to any notion of social justice and shame to us all.
Today a small victory occurred for a family I work with at IBA. It was not perhaps of huge significance in the grand scale of the inequality faced by people living with disability. It was however the culmination of a 7 month struggle. It was a determined effort to stand up for the rights of a child let down by a system that had shown a cumulative lack of understanding and compassion. That is all it takes to fail a young person and family who bravely face great challenges on a daily basis.
The conduct of those who had influence and power in these matters stands in stark contrast. Self interest and a refusal to stand up and speak up lest they risk their position and privileges characterised their failures.
A safety net that should be a cornerstone of a civilised society has been fought for and won. I’ll sleep a little bit better tonight knowing that.