A Difficult Week!

Another week of uncertainty and conflict here has left me feeling a bit drained. Reflecting on the past week I realise just how much Andy’s autism dominates our lives. A let down over some help and support desperately needed and looked forward to prompted me to respond with bluntness that on reflection would have been best to have avoided. Sometimes it is hard to just roll with the lack of support and help – we do this most of the time. Sometimes I feel that many of my efforts aimed at raising awareness are received at some level but perhaps do not convey enough of the reality of our lives. Some of this is down to my amateur writing skills I guess and I appreciate that people have their own concerns and problems.
Our attempts to obtain the supports and help from official sources have not faired much better. We seem to be locked into a service that is underfunded and under resourced and that uses obfuscation under the guise of laudable concepts to fudge the needs of the vulnerable, or at least to draw out and over complicate the process. Misleading or confusing terminology does not make a difficult process any easier or clearer. It is often not helpful to the client group as it limits involvement for some and requires more of their precious time if they choose to invest in it. No one would argue about addressing the higher order concepts of a client’s needs ( their esteem, fulfilment, self actualisation and so forth) but the basics need to be in place first. The bottom of Maslow’s hierarchy of needs surely has to be in place before we consider the more abstract needs? How do you incorporate values and concepts that reflect an autistic person’s views into this N.T. system? To use an holistic approach assumes a robust support system that sadly is not there these days, however beneficial it would be. Too many are scrabbling to access very basic support.
We had our monthly respite this week. The break from autism was merely a physical one however as we spent most of it emptying the furniture from Andy’s room and removing the old floor covering. We repainted and cleaned thoroughly before the flooring was replaced and we moved the furniture back. We have also been pursuing support through emails, meetings and assessments. There has been stress and worry a plenty, all of it inspired by autism.

One thought on “A Difficult Week!

  1. Hi Duncan, I received your e-mail not sure I was meant to receive it. Andy is a very lucky boy to have great parents & siblings keep fighting the cause & you will succeed.

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