Why help doesn’t always mean support

It’s been over two months since my last blog.

I don’t think it’s supposed to work like this?!

So I’m going to change. I’m going to commit to write a blog every week. Not long. Not clever. Just a log of what I’ve been doing. Just a blog.

And to give me some focus I’m going to write as though I’m speaking to my Dad. Who is also probably autistic, certainly super-bright. And who has dementia. These are the words I wish I could share with him. A conversation with my Dad.

I’m going to start by backtracking to my first week back at University after Christmas, so I’ll have a record of the year. Bear with me, I’ll catch up.

My task this week was to put together a plan for my PhD. Specifically, a Gantt chart. Yes, I had already written a schedule of work, detailing things to do term by term, and subdivided into three areas: research, writing and development. And I had no idea what a Gantt chart was, or how to do one.

Well, I googled it. In essence it’s a spreadsheet to schedule activities. Sounds fine, but have you ever tried to schedule all your tasks for the next three years? Where do you start? I had so many questions I wanted to answer before I could start this task. It’s interesting that I feel the task doesn’t start until the thinking is done, which may explain why the thinking stage is so filled with panic and anxiety for me (think quicker, must think quicker, must finish thinking and get started!)

Questions like how do I compile a comprehensive task list? How do I know I’ve not missed anything out? How do you work out how long each task will take before you’ve done it? My brain was overwhelmed before I began, it felt like the top of my head was literally frying.

It hadn’t helped that a professional assigned to support me told me the trouble with my ‘all tabs open’ brain was basically because I lacked discipline. Yes, that was the same meeting when he asked me if I was going to have a meltdown, because ‘people with autism do that’. When he told me I had so many issues he didn’t know where to start – seriously!!It was actually the only meeting I had with him, as I refused to see him again. I came out feeling like I’d had one of my worst days at school, all over again. I came out feeling stung and angry and inadequate and less-than. Not better than before, but damaged.

It was a striking reminder of how tough it can be every day for some autistic girls, struggling to manage in mainstream schools.

Fortunately, I am now in a different place.  I know my rights. I know how to take action. I now have a brilliant Professional Mentor from the University supporting me instead. Who talked me through the Gantt chart nightmare. Who gave me strategies. Who didn’t make me feel stupid. Who made me feel I belonged.

It leaves me wondering, how do our girls respond when they are struggling to see school, the whole of school, as a safe place to be? What are their options? What do they do?

 

 

 

 

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