autism

toby stuff

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.

 

Ladybird

(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.

 

Ladybird2

 

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.

 

Lavender

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.

 

Lavendar

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.

 

Apple bloss

 

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.

 

Lichen

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

 

Toby8

crafts & knitting

laid low

This week saw both H and I laid low by the same virulent little lurgy that kept Amy off from school last week and as a consequence I feel as weak as a kitten today. Luckily for me I have lots of balls of wool to play with and cheer me up.

 

Rowan 4ply

So I am sitting here stock-taking my stash and wistfully re-packing my precious but dwindling reserves of Rowan 4 ply cotton.

 

4ply copy

 

1. bloom, 2. cheeky, 3. boudoir, 4. orchid, 5. angel, 6. allure, 7. tutti frutti, 8. mandarine, 9. honeydew, 10. zest, 11. fresh, 12. cooking apple, 13. fennel, 14. monsoon, 15. sage, 16. ripple, 17. tear, 18. baby, 19. bluebell, 20. violet, 21. nightsky, 22. navy, 23. steel blue, 24. cobalt, 25. agean, 26. shale, 27. ardour, 28. aubergine, 29. violetta, 30. flirty, 31. provence, 32. bleached, 33. cream, 34. opaque

 

Luckily I've been able to track a little more of it down recently, thanks to some very nice people over on Ravelry, but in a few colours I'm down to my last precious ball and there are a few colours that I have never had the pleasure of getting my needles into!

It's such a shame that Rowan discontinued this lovely yarn. Hopefully one day they'll see the light and re-release it because in my opinion nothing comes close to it's pretty colours and soft handle and it is perfect for bunny clothing.

 

Girlies2

 

Talking of which, I'm off to cast on a little dress and knit myself better. Happy weekending all x

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PS: just to let you know, I've turned on a new comments thingy that lets me reply, which I will endeavour to do when time and Toby allow. So if you ask me a question, check back the next day and hopefully you'll see my answer.

crafts & knitting · general stuff

smiling

I have a big smile on my face today. And what has prompted my big smile? Well, it's this lovely little package…

 

A package

It's always a delight to get a package in the mail, especially one that is so prettily wrapped and one that contains something eagerly anticipated, but not yet seen. I pulled one end of the gingham ribbon and revealed…

 

Block

 

Block2

 

…the beautiful block that I won in Annie's lovely giveaway to celebrate her year of blogging. It comes from the very talented Fee who has some wonderfully desirable items in her shop Chipper Nelly.

 

Shelve

Shelf

I will treasure this block with its pretty vintage button and perfect-for-me-colours and will keep it on the shelves next to the computer, where I can see it every day. Like all of my other gathered treasures, it will prompt thoughts about the very best bits of blogging: of fellowship with people you've not met for real; of sharing interests, ideas and passions and celebrating all forms of creativity.

Thanks Annie and thanks Fee

 ………………………………… x ……………………………………..

 

PS: thanks for all of the kind comments on the little video of Toby in the previous post. I'm so glad that you all saw what I saw – that unbridled joy. It does make you laugh out loud to see him like that and such carefree, all-consuming pleasure and delight is infectious. I'm glad you enjoyed it too.

 ………………………………… x ……………………………………..

PPS: It's Mothers day here in the UK tomorrow, so best wishes to all you lovely mummies out there – hope you get breakfast in bed and a relaxing day!