Looking back on 2016 – March

Spring had sprung in March with the vaguely warmer weather and the lighter afternoons if not evenings. We took advantage of the warmer weather and spent lots of time out walking, exporing nature and getting a spring back in our step after the long cold winter months.

Disability awareness was rife within the mainstream news. Stories involving a Mencap care worker using her clients wheelchair as a shopping basket, with them still in it, caused widespread disgust and calls for the worker to be sacked for her lack of compassion for her vulnerable client. Those more wise to the system started to call out the senior members of the companies, recognising that the lack of compassion for those that they are meant to work with and support is lacking – this led to a number of people being blocked and ignored on social media accounts, it is becoming more obvious that there is no accountability nor respect for disabled people and their families, a mindset that is filtered down from CEOs to the minimum wage care worker using her client as a rest from holding her shopping bags whilst having a crafty fag break. The system sucks.
There were also lots more high-profile media campaigns for children to be brought home. The daytime programme Good Morning supported the #freematthew campaign and steps were finally initiated for him to be allowed home. This opened up channels for other families who had been hushed by fear for their young people to speak out and the hashtag #kidsincrisis began to trend highlighting the vast amount of children being kept away from home, the he cost that this ensures and the lack of services and support for children to remain  home with their families. A scary time.

The Autistica charity ran a mainstream news reports that those with autism are at higher risk of dying young. I’m always very open with the children about the uncertainties of Dylan’s future and how things may be for him but this crushed me. How could I explain to them why their beautiful older brother is at risk of dying so early?

Because of his needs? His needs that they meet so perfectly themselves aged only 9 and 10 but a whole health system and infrastructure can fail at meeting?
Adults failing him?
Professionals failing him?

I couldn’t break their spirit and trust in the caring adult world so soon. So I talked over the telly until the report had finished. But this is real. This is Dylan’s future.

The spring time telly brought a range of autism based viewing, ‘Louis Theroux – extreme love ‘set in America showed some very different ways of managing behaviours. There was an acclaimed fictional BBC series ‘A word ‘which was set to follow a young family whose son is in the process of being diagnosed with autism and how the effects of this ripple with the wider family. This is what I got from what everyone else was saying about it. I didn’t watch it myself, I tried for the first maybe 10 minutes and then found it far too clean-cut and predictable – This doesn’t reflect my autism journey and I think that the expectation from the reviews was it was going to be life-like and reassuring to parent – whereas I found it condescending and unrealistic. One show I did love was BBCs Employable Me. Following a young man with autism who did incredibly well at a work experience so that he was finally able to be employed. The programme focuses on the skills and attributes that we all have – even those with autism – to be an employers dream. The speech at the end by Brett makes me cry every time. Beautiful.

All these external influences were reaffirming to our journey with Dylan and how we felt we needed to proceed to enable Dylan to be as functional as possible. Us having sole control over the direction of his education allowed us to leave more of the table based learning that is commonly found in schools and take a more practical direction which could promote Dylans independence and allow more opportunities for his future.

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