April 1st is World Autism Awareness Day which kicks off the whole month of April as being Autism Awareness month. This year there was a bit of development in that not only awareness but acceptance was being requested. Equality isn’t everyone having the same but everyone being able to access the same.
Within society we should all be striving for the third picture in the second image
Due to the highly evoking political developments in April – 2016/17 budgets, financial cutbacks, austerity April was not a positive month so most of our time was spent seeking the positivity, sharing stories, promoting awareness. I don’t share this blog with family, only a small amount of friends and the rest of the internet. Usually I try not to bombard my friends with Autism information (although I probably do!) I am after all a parent to NT children, a wife, daughter, nurse, woman etc. Autism isn’t the only string to my bow 😉
April however is an exception. Every day I post a picture of Dylan with information, details of our lives, I sing from the rooftops and gloat about the things that we are doing. This often creates interest; people comment on how busy I am and how well Dylan is doing. I am aware there is a lot of negativity of the burden of having a child with additional needs and when times are hard it is easier for people to become negative about all around them. I focus on the positive elements of Dylan, his progress, the differences and how they enrich my wider life by providing me with additional skills and insights. This occurs every single day but April is a month where I can publicly bleat on about how much I love Dylan.
I love it 🙂
In early April Dylan had his Statement Review meeting which is generally worthless. The document that we meet to discuss involves Dylan’s education plan for school; he doesn’t go to school so it’s usually a pretty quick meeting. My reasons for attending this is that if something were to occur and Dylan needs to go back to school – like me dying or something as believe me that’s what it would take!- Dylan would be able to hit the ground running with this prepared document instead of being held within a system that would take months to arrange provision for him. With his statement document already written they would have to do this instantly. Somehow, this is for my peace of mind.
This year was different in that I insisted that Dylan attend. He hated it as I suspected he would. All that sitting around and talking bored him and the building was bright and noisy. Although it was hard for him I think it was important that Dylan is real to these education people. They are after all making decisions about what he needs and would have in our absence but none of them have actually met him. Compared to previous years when the negative statements would flow easily I think the general approach regarding discussing Dylan in his presence made them speak with a little more compassion and consideration which made the whole event easier for me. I often get upset and angry at these meeting due to the negative light that ifs often shone on Dylan when I know he works so blooming hard!
Also in April Dylan’s Dad ran the London Marathon and raised £1599 for Caudwell Children the charity which gives us an annual grant to fund the consultancy fees for Dylans ABA programme. Caudwell Children gave us the initial funding to get the ABA set up, an outlay which we would never have been able to do without financial support. That was 5 years ago and we have been lucky enough to have their support every year so far. It was important to give something back – Josh ran a 5k run last year and raised £700 for them, this year was Dads turn.
We all went to London on marathon day to watch and support him. It was a long busy day and with myself as the only adult to watch all 3 children it could have gone so wrong but they were all fab.
Josh donated his lunch to a homeless lady on the way there and they all watched the constant stream of runners for hours. We were also lucky enough to see Dad run past and cheer him on, he looked exhausted bless him!
18th – 24th April was the 7 Days of Action which is a UK campaign that was started on in 2016 by seven parents whose children were detained in Assessment and Treatment Units.
The aim of the campaign is to raise awareness of the lives lived by the 3,000 people with learning disabilities and autism who are currently trapped in these Assessment & Treatment Units.
Ultimately, the campaign would like to see everyone out of units and living in a home of their own.
As part of the campaign a daily story was shared publicly for each of the 7 days surrounding young people including Stephen, Robert, Chris, Tianze, Thomas, Jack and Eden who have experiences of being detained in assessment units across the UK. They are kept away from their families due to situations attributed to their disability and circumstances which are beyond their control. This could happen to anyone. Their stories were shared as part of raising awareness and hoping to make change.
And to finish April and exude Autism acceptance the wonderful Anna Kennedy shared her TED talk regarding autism being an inspiration.