Looking Back on 2016 – May

May, summer was on its way and the sun was shining. Dylan was embracing the ‘making things’ element of his day time education – Cooking, wood work, lots of time out doors enjoying the fresh air. Theres little pressure on Dylan within his day, we recognised that sometimes just functioning in the presence of others is a strain. As long as progress is being made, it will all be okay.

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For the family, Josh had exams which put a huge amount of pressure on him, on all of us! Although I kept telling him that these exam cannot measure how awesome a person he is nor how kind or considerate or hardworking he is. The external pressure from schools and peers made it almost unbearable for one so young. This pressure is new to us, having Dylan missing all these unnecessary yet unavoidable pressures and demands we had been oblivious to the stress that typical schooling can hold.

For me all the raising awareness and highlighting the positives of Dylan and his differences throughout April had made May feel like the month for action. I felt compelled for change, to make active improvements and to reach out, totally unsure of how though but the fire was burning within.

Then on 12th May some devastating news. Kreed died. Kreed was a 18 year old man living in America. He had autism and used a device to communicate. I had followed his journey on Facebook for about 2 years previous. Watching and admiring how his parents – one of whom is an ABA consultant talked to him, expected things of him. And it worked.

We don’t know anyone that is affected by autism like Dylan, I have lots of friends who have children diagnosed with autism. They are often younger and are developing, albeit slowly than their peers but they are developing. Kreed was a little bit older, having the same mannerisms and look of Dylan sometimes. We have ever been told what to expect from Dylan, not cognitively, with his behavioural nor anything, we are entering his teen and adult years blind. Seeing Kreed and his life was like a sneak peek into the future and it made the future a much less scary prospect.

Kreed had been progressivly unwell for a while however his death hit me like a truck. I honestly grieved for him which is bizarre as I never met the lad. I found out he had died on the morning of 13th May and I remember I somehow made it through a morning of work with a medical student. I dropped the student off and parked up in a residential street before just breaking down in floods of tears in the car. The whole injustice of his death and the very special place I held for him reminding me so closely of Dylan was heartbreaking. I still cry for him now.

By Kreeds death I was cruelly reminded that life is short, unpredictable and sometimes bad things happen to good people. We are all here on this earth with limited time, we must make every second count.

Shortly after Kreeds death I began this blog, it was lots of little posts to start with, things that had been swimming around in my head for a while but I needed to get written down to achieve some order about it.

‘With a hop,skip and a jump’ was formed shortly after.

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