Empty

I know all about the grief cycle - we studied it thoroughly enough during our psychology and psychiatry training at medical school and I have supported various families through their losses, both in the neontatal period and with older children. So here I am, in the midst of my own experience and all I feel is empty. Perhaps because at the moment I don't feel there's any closure, I almost feel distant from the whole experience. If I hadn't been for my scan on Wednesday I would still be pregnant (in my head, at least). I would be planning my future with my new baby, and thinking about all the logistics of adding to our family. Instead I'm in limbo, neither pregnant nor actually NOT pregnant. I'm hoping that my operation tomorrow will mean I can start facing my future again. Planning a very different future, but still a future.

I'm staying strong at the moment for the family. James has no idea what is going on and is going through a rather challenging time at the moment. His current favoured activity in the car is to undo his seatbelt and wind down the window, throwing himself out, Dukes of Hazzard style. I'm hoping a friend is going to be able to lend me her spare five point harness car seat suitable up to age 8, as it's getting quite dangerous now.... He's very hyper at the moment too, and perhaps that's because I don't really feel up to spending time with him. I feel so guilty about that and David is managing the brunt of his difficult behaviour but I need to look after myself at the moment.

The weekend has actually been easier than I expected. I had a stall at Duck Pond Market selling my crafty bits and bobs. I've been going there since April, and this was my most successful weekend. The scarves went down very well and my hand dyed yarn is proving very popular. I'm guessing I'll be back to dyeing over the Christmas break, to restock. I had avoided dyeing whilst pregnant as there is a risk of respiratory difficulties with inhaling the dye powders. So now I can do as I please! The other crafters at the market are amazing people - I have shared my difficult news with them and they've all been so supportive this weekend. I wouldn't have got through the weekend without them. I also indulged in some therapeutic spending, which was lovely.

Think of me tomorrow, my friends. I will be waiting and knitting a therapeutic project to keep my mind occupied. I'm sure there will be a lot of tears and heartache, but it will be the beginning of a new phase, the start of a clean slate, and some sort of closure.

When you least expect it....

I am often offered help and advice about autism and its causes and how I ought to manage James and what I should do to help myself and why it has happened to us and that there is this amazing new diet that cures autism and - well, you get the picture. I have learned to take it all with a pinch of salt, decide which pieces of information I want to filter in and then set off researching on my own. As soon as you have children it seems that it is an open invitation to people to start commenting on your parenting skills and giving you advice that you haven't even asked for. A recent post on a forum I frequent linked to these rather amusing baby t shirts, which I would love if the slogan could be altered to "please don't give my parents unsolicited advice - I'm autistic. Google it". Apparently the National Autistic Society used to sell a slogan t shirt that said "I'm not naughty, I'm autistic". I have toyed with the idea but whilst I have no problem labeling James as autistic I don't feel comfortable labelling his behaviour as "naughty". Even though his challenging behaviour is all a result of his autism very little of it is truly "naughty" and I'm not sure the slogan will help. Will people just think I'm making excuses for unacceptable behaviour and still proffer me advice and criticism?

It's very rare that I get any positive affirmation of my ability to deal with James and his difficulties. I do have a very close support group at my local branch of the National Autistic Society and occasionally turn up to our weekly coffee mornings to be told I've been "spotted" somewhere and how well we were all doing. Days like that make my week. Perhaps the most meaningful encounters are those times when an innocent bystander with no knowledge or understanding has made a positive comment about my children - often at the supermarket the assistants tell me how well behaved they are or how attractive they are.

Yesterday I was lucky to have a few hours to myself - James was at the special needs playscheme at Kids Can Achieve, a local charity that was founded by parents of children with special needs to provide the sort of support and assistance they needed. Bea was with Charlie. So I took myself off for some retail therapy and peace and quiet. I was standing looking at chopping boards when I heard a voice I recognised - you know the type of voice that is unforgetable and makes you sit up as soon as you hear it, well that's what I heard. It didn't take me long to place the voice and it was a colleague from my most recent workplace, before I had Beatrix. We had a long chat about life and James - she was not aware of his diagnosis as it only became apparent after I went on maternity leave. I discussed my concerns about going back to work and how it would be difficult to remain entirely detached when seeing parents and their children and breaking the news of diagnosis to them when I am still coming to terms with it myself. I even talked about my idea for a new role for myself, as a family advocate around the time of diagnosis and she thought it would be an excellent idea. I am now going to persue this as a realistic possibility. I doubt I would be able to get NHS funding for this sort of role, but I am sure there must be charitable organisations such as Contact a Family who may have a caseload I could take on. So watch this space....

After I had picked James up I took him for a drive (he loves the motion of the car) and just as I was about to head home he fell asleep. I took my opportunity and pulled over and turned the radio on - to my surprise I found myself listening to a Radio 4 interview with Dame Stephanie Shirley, an amazing woman who has dedicated her charitable work to funding research into autism and has founded a specialist school for children with autism, Prior's Court. My husband is keen for us to get involved in research, particularly if it points to the causes of autism, so I will be researching how to take that forward. Perhaps another new calling for me....