I’ve spent just over two years trying to secure the correct support for my three children. It is a tough uphill struggle a lot of the time as there are many agencies to deal with – spread across the NHS, the education system and the charity sector.
Often I see my role as being a project manager, the one person who sees the whole process from beginning to end and co-ordinates all the separate parts. Of course, there is a big discrepancy here. If I wanted to be a project manager, then I would see if I had the aptitude for it. I would also study the field I wanted to project manage in and make sure I understood it.
As with every parent of special children, I didn’t choose this, it chose me. Because of my personality I have become self-educated in both autism and how the SEN world works. I’ve even done a university led free online course.
I’ve also got into the habit of reading business focused books, like Getting Things Done. I have managed to turn the ideas into a plan for running the house. With various systems in place, the home ticks over with a mixture of diaries, to-do lists and action plans. (Well, ticks over might be an exaggeration. It does keep us one level above “lurching from one disaster to the next” though!)
Now I have a private diagnosis for Youngest which comes with a fifteen page report. This has to be transmitted to the GP. Then I’ll need to ask the GP to make referrals to the various specialists that he’ll need. Meanwhile, I’m also communicating a different subset of that report to the school, to see what they are able to do. And I have to combine that report with a different one from the Educational Psychologist. At the same time I have contacts with various local groups who also provide highly valuable input to the process which I then integrate with all of the rest.
And this is just one child, I’m also fighting the ALN battle with Middlest who has just moved up to Secondary School. Once again, my main job will be in transferring information between various bodies. In this case, I have some very valuable input from the National Autism Society which now needs to be handed on.
Last year I was actually asked to get a report from school and take it into my GP. I was quite surprised that the school wasn’t expected to pass it directly to the surgery, but instead I literally had to hand it across.
I think at the moment I have three or four appointments for meetings in my diary. It’s not a job I expected to do and I am very fortunate that I have the time and the skills to be able to do it. I keep a log of most of the important things that happen so I can refer back to it when I need to. The weirdest thing about all this is that you need to keep on top of things, keep pushing to make sure that everything keeps moving forward. But, at the same time, everything moves almost glacially slowly. It can easily take weeks between making a phone call and getting the appointment. If I worried all the time I was waiting, I’d make myself ill. So I’ve developed a knack of keeping the pressure on without stressing every day.
I do a lot of charity work and support the local groups as much as I can. Part of the reason for this is that I know how much work it all is (I’m very lucky to be a full-time house-husband).
Does anyone else feel like an unpaid project manager?