I do like this little space here. Writing things to share with you really helps me to focus on all that's good and positive in my life and I don't particularly like sharing the negative stuff until I can see some kind of light at the end of that particular tunnel and can finish off what I write with a positive note. That's why I've not written very much about what's been going on here with Toby over the last 15 months.

 

(Random pictures from the garden this afternoon)

 

Last year I did mention that I had got in touch with social services because for the first time I felt that we weren't coping and needed some respite help. I did touch on the nights (with Toby being awake for 5 hours in the middle) that leave us feeling exhausted and have forced us to change his room around. But I've not really mentioned the drives I took him on regularly at 3am with both of us in our jammies and me barely awake just to calm him down from a screaming state (because being in the car always calms him) so that Amy could get some rest before school the next day. Nor have I dwelt on the extreme self harming that progressed from the handbiting, nor the aggression that had me feeling frightened of him for the first time ever. And I only mention these things now because thankfully things have moved on and we no longer seem to be in such a desperate state of affairs.

 

 

This time last year we were awarded 6 hours of respite care a month, with Toby spending this in a one day chunk at a specialised care facility kitted out with sensory room, indoor play area, quiet room and a lovely outdoor play area. Whilst this was wonderful on the one day a month that he spent there, it was so infrequent that it didn't have much impact on our family life. At last, after lots of meetings and assessments we are about to have a substantial increase and from April 1st Toby will be going for a one day visit most weeks, especially in the school holidays. I have a feeling that this could make a big difference to our family life, giving me a little more time to spend with Amy while she still wants to be with me and helping Toby feel less frustrated by filling his time with more to do.

 

Over the last 8 months I've also been seeing a psychologist at the challenging behaviour unit who has helped me and Toby's teacher develop some strategies for managing his injurious behaviours a little better. At school he was having to be confined to a 'quiet space' both for his own safety and that of his classmates and at home I was often having to physically restrain him. It's obvious now that these two things were adding to Toby's anxiety and driving his behaviour to worse levels and now we just let him handbite and fling to get it out of his system and he's managing to bring himself under control again without so much adult intervention.

 

At night H and I now take it in turns to sleep with Toby in one of the 3 double beds up for grabs at our house. Toby tends to start the night off upstairs with me and after his usual 3 – 4 hour nap he trundles downstairs to climb in with H on the sofabed. He then fidgets and fusses for a few hours before usually drifting back to sleep for another couple of hours, though often he does stay awake for the rest of the night. It's not a perfect arrangement and it needs improving but it's a lot better than it was because at least Toby is now calm and quiet and Amy can get a full night of uninterrupted sleep. In the last 18 months he has only slept through the night 5 times and he has recently been referred to Guys and St Thomas's hospital sleep disorder clinic. While I'm not sure how much they can help, I'm keeping an open mind and waiting for our first appointment.

 

 

All of this puts us in a more positive place than we were in March 2011. Most of the time I feel confident again in helping Toby to manage his behaviour and I don't often feel frightened of him – I hope this lasts as he's going to be a big chap once he's finished growing.

 

The last positive thing and the definite icing on the cake is pooh! Sorry, but it is exciting when your 10 year old decides to use the toilet for a pooh for the very first time. I can tell you that I was whooping and cheering and clapping like a mad woman so he was in no doubt that this was a very good thing. We're still a long way away from saying goodbye to nappies permanently but things are definitely moving in that direction. See, a nice positive thing to finish on.

Happy weekend everyone and thanks for all the well wishes on the previous post – we're getting well again x

 

 

 

It's very wet and windy outside today, but I don't much mind because here in my little corner of the world all is quiet and cosy and peaceful.

 

Christmas this year was really tough going for Toby, and therefore for us too. Each year I think that it can't get worse and each year I am surprised to find that it can – you'd think I'd learn, but then I suppose I am an optimist. The change in routine means that Toby finds all school holidays incredibly stressful and coupled with the Christmas tree and decorations making the house look different we had a lot more hand-biting, meltdowns, screaming flinging fits and awful nights. He couldn't cope with some of the decorations so we had to take them down and as usual we didn't get to eat Christmas lunch all together – I spent most of it in the garden blowing bubbles for Toby while Amy & H ate.

'Special days' really accentuate the difference between how our family lives and how family life is for most and I know it's particularly hard for Amy despite the considerable effort H & I make to be upbeat and jolly. I do try to focus on all that I have to be grateful for, but deep down I wish with all my heart that Toby could experience a little of the magic of Christmas and as a consequence I felt tearful for much of Christmas day.

Anyway, I'm not going to dwell on all that could be better because, like many who deal with difficult circumstances, I'm aware of the deep well of despair and bitterness that it would be all to easy to fall into. I have seen it claim some that I know and that is not how I want to live my life. Instead I'm going to take up my knitting, enjoy my cup of tea and revel in the peace, quiet and calm that has returned here now that Toby is back at school. Thank goodness for familiar, comforting routines and the simple, quiet pleasures of knitting.

Time to recharge my batteries.