Summer colds, sports days, parent's evenings and school concerts have filled most of our time here over the last week. But in between I've squeezed in a little yarnie time and as well as putting the final touches to a batch of knitted animals, I've finished cushion no four.
Though when I looked at all four of them together, it dawned on me that I really wasn't keen on the third one and so it's been relegated to the bottom of a bag while I decide whether to unravel it.
I'm pleased though with the remaining three and like the way that they sit together, all different but tied together by the same colours.
There will be news on the batch of knitted animals shortly – I hope to get photos of them done before the end of the week.
We've also had some news on Toby's respite. It's been confirmed that we've been granted 1 day a month of respite (10am -4pm) which is pretty paltry really and left me feeling a bit despondent considering all of the meetings, paperwork and angst we've been through to get it. It also doesn't do a great deal to relieve the continuing lack of sleep, but they won't even consider taking Toby over night until he's 10. Still, looking on the positive side it's better than nothing at all.
Toby has had his first short visit which didn't go particularly well, but as everything there is new and unfamiliar to him, I'd not really expected it to. It's a wonderful purpose built place – a bit like a big family home with bedrooms, dining room, sensory room, toy room, quiet room and a wonderful garden with trampoline, climbing frame and sandpit. Hopefully once he gets used to it, he'll enjoy going there for the day and hopefully somewhere down the line we'll be able to get a little more help than just 6 hours a month!
little cotton rabbits 
Hi Julie. these are just gorgeous and make me want to pick up my crochet hooks (though I can’t remember how to do it!) Can’t believe how little help you are getting in terms of respite. Keep strong xx
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Julie,
My severely autistic son is now 19. Toby reminds me very much of him.
Respite alwsys tends to start small sadly. Does your local authority consider providing you with Direct Payments, that can supplement your respite.
Good respite is a godsend. We helped set up our local childrens respite centre even down to painting and decorating bedrooms. The staff were of a very high quality and the centre you describe will likely be the same.
I hope you and he will grow to trust them and you can soon move to overnight care.
God bless
Rinty
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Maybe you will get more “respite time” as time goes on. I’m wondering how many others are applying? Probably lots and that has to do with the availability of time.
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Well, it’s a start Julie, a pretty crappy start admittedly but it is something. I guess the point too is that now he is ‘in the system’ for want of a better phrase so hopefully you will already have fought that level of bureaucracy when you want further help.
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Hello Julie,
It is very little what they have offered you BUT at least, your foot is now in and hopefully they will see the need to increase those hours a little more. I am confident they will.
Beautiful cushions !!!! I have been both knitting and crocheting this year and now I am adding a bit of repurposing used clothes. All of these activities have a calming effect on me.
Hugs,
maria
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Hi Julie. I just love these crochet cushions! They are so eye-catching and pretty.
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Hi Julie,
Your cushions are beautiful, i love the colourways, so fresh looking.
I am so sorry you haven
t reeived much in the way of respite care. But as you say i suppose its better than nothing. Also at least you are in the system now.Love from Carole from Rossendale xxxxx
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Such beautiful work Julie, you are so talented. 🙂 Unbelievable how little respite you are being offered, but I hope the short time you do get will be of benefit. I often think of you, and as Pipany said, keep strong Julie. love, Tina xx
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Gorgeous cushions on which to rest your weary head. I’m stunned they’ve only given you 6 hours per month – how is that different from just an ordinary school day?!
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Love your colours.
I do hope that now you are in ‘the system’, your respite plans come together. Horrible, I know.
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Saddly this is all to often how it goes- but take heart, you have your foot in the door as they get to know all of you and Toby better and better, they will see the need and benefits will be addressed!
Its the first step!
The pillows arer just wonderful, what a cozy place to snuggle up with a book or some knitting!
Hang in there!
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Your cushions are gorgeous and are lovely all grouped together. I must admit though I did like cushion number 3!
I can’t believe they only offered you 6 hours but as you say it’s better than nothing. It’s 6 hours you can now devote to other things including some lovely mother/daughter pursuits! It sounds a good place and I’m sure Toby will grow to love it too.
Vivienne x
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I hope that you will indeed receive more help than that! Love your pillows! Lisa L.
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It wasn’t until I started reading your blog that I thought about the challenges raising an autistic child brings, you are a brave and wonderful mother and you little boy is lucky to have you….
S x
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Hello. I just LOVE the colors that you used for your pillows. They are so soft and soothing.
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Wow – that is disappointing. I am not familiar with the care of respite here in the US, but with your most recent post, it appears as a place for Toby to go rather than someone coming into your home to help as I originally thought. I can only imagine how tiring this must be. We recently ended a year and a half of 24 hour care for my brother who had ALS. We were so fortunate to have help from family, friends and a few loyal caregivers – I don’t know how my sister-in-law would have coped on her own. I will keep you all in my prayers that those in charge of decisions will realize the need for more time in the wonderful sounding facility for Toby. Also, that he will look forward to his visits there!
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Beautiful cushions in lovely colours. They do look lovely together.
As for the lack of constructive help you get, I find it appalling. I know that one day a month (well, it’s not even a day, is it?) is better than nothing, but surely the powers that be should be able to give you more. I hope they can increase it for you.
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Everytime you show these cushions I want to learn to crochet. Your choice of colors is wonderful! Someday maybe I’ll find time to squeeze this talent in. So sorry you will only get 6 hours a month. Hopefully as he gets into the system things will progress faster and you will get more respite time. It truly is so important.
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I can see why you aren’t keen on cushion 3 – it’s very pretty but doesn’t ‘go’ with the other ones due to less white. There must be a better use for it than unpicking though!
That’s not a great result for respite, although something is better than nothing. If you can apply for Direct Payments, that is a regular sum of money to be spent, or saved and spent, on services for Toby – my daughter got them a couple of years ago and we have just had the amount upped to cover her careworker who comes to the home and takes her out once a week. With DP we can ask for more help when needed, like now as her college has finished for summer & my work hasn’t. Do you have access to Family Link? My daughter used to go off for two weekends a month & stay with a family; it lasts until the child is 14. I don’t know if it would be suitable for Toby but worth looking into.
I’m positive that once the new place is set into Toby’s routine he will love it and look forward to it, then maybe they will increase the time allocated. At least you have your foot in the door and can be prepared for the first review to ask for more!
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Very cute cushions!
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You are Toby’s first and best advocate. Appeal now, and after his first visit and at (and before) his review. Apply for all benefits, this may fund another stream of support for Toby and your family. My ex secretary used to say..Shy bairns get nowt. Or children who are unwilling to put themselves forward find themselves at the back of the queue. (I prefer the first version)
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Hmm…seems like once a month is hardly enough to get Toby familiar with a new place to be able to adapt – even if you would break it in slowly.
It will be hard to choose whether to sleep or knit or catch up on must-dos!
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Gorgeous cushions – including no.3! I think you may have to find it a different chair to sit on as it’s far too beautiful to unravel.
I’m sorry to hear you’ve been given so little respite to start with but let’s hope it’s a step in the right direction and will give you all the support you need and deserve.
It seems these things do take time. My brother had to fight tooth and nail to get a carer in for my Dad but once he was in the system and his true needs became apparent to the powers that be things improved rapidly.
I am so full of admiration for you, Julie. I think you’re doing the most amazing job of being a fantastic Mum and staunch supporter to your beautiful boy.
xxx
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I’m craving a lot of white with just a hint of color….these fit the bill! Beautiful, fresh, clean looking. They make me smile!
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Hi Julie
As Jill said in her comment earlier, shy bairns get nowt! =) That does seem a very small amount of respite care. As other have commented, it may be worth asking your local social care department about direct payments or a personal budget. My authority has been using this system for adult social care for some time now and are starting to roll it out across children’s services. The site http://www.in-control.org.uk/ may give you a bit of background to it all.
Knitting-wise, your cushions are fab! Such vibrant colour combinations. I can see that the fourth cushion doesn’t really go with the other three but it does seem a shame to unpick it. Could it have a happy home elsewhere in your house or garden, instead?
I’m knitting with possum yarn at the moment! Very different – I bought three hanks of it in New Zealand and am crafting that fallback favourite of all knitters: the scarf!
Take care
x Emily
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I hope the respite is on a week-end, Julie. That would make a difference to your family time.
How frustrating that so much effort has to go into so little result. The job carers do is really not appreciated nor understood.
Then again, look at the results of your efforts with your cushions and animals. Maybe that’s an indication of the result that is going on behind the scenes with you and Toby.
BTW, I can’t tell you the number of times I have unravelled something that was not quite perfect.
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CUSHIONS LOVELY,UNBELIEVABLE 6 HOURS MONTH.
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i think your cushions look absolutely brilliant!
x
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I love the word “respite.” There’s so much to it. Rest. Relief. A letting go of long-held breath. And a touch of green somehow. The six hours seems small, but it’s something. A day you can move your arms and turn your back. It’s a beginning. Breathe as much as you can on that day. And hold your arms out and up so that you can remember what it’s like to have wings.
The cushions are lovely just where you’ve put them. My heart aches for number three. I think I’ve always been number three myself. But the white with the dashes of color – it’s just like you, that delicate, elegant touch you have. It’s interesting to me, how deft your work is, like a balance to the weight you have to carry in your life – love is heavy. But this is a true juxtaposition – we balance the slogging of the necessary with the flight of hope and imagination and faith. You surround yourself with the weightlessness of white and yellow and flowers and spring green to counter the earthier colors of work and service.
You are very good at balance. The one thing I worry about with the respite is that it will remind you how tired you are on the other days. That it will leave you impatient for more freedom. Don’t let it do that. Take it as a gift, a preparation. Not as a tease.
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Lovely cushions – so pretty. Sorry to hear about the lack of respite. Stay strong x
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Oh, Julie. I know that was disappointing to hear. Hopefully, respite can grow to at least one full weekend a month…enough to give you some significant rest. It does sound like a good place that you would trust for those few hours a month. Toby would be in good hands.
You are so beyond talented. I loved all of the pillows! The colors are great!
Blessings,
Dianne
http://www.mysouthernheart.com
http://www.campbellkidsfarm.com (my new farm blog)
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I love your cushions & have enlarged the pics so I can see your choice of colours in detail – brilliant! I’ve just made a granny square (I love the quiet of the morning) and you’ve inspired me to make a cushion using my new-found skill – I never thought I’d get to grips with it after years of knitting.I hope you find time for yourself whilst Toby is in respite – albeit for a short while.
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They are so pretty for the summer. Which yarn did you use do you remember? 6 hours isn’t much but it is better than nothing. Think what you will accomplish with 6 hours. You accomplish so much now.
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The cushions are lovely!!!!
I am sorry to hear about the respite but you need to keep shouting. It took me 8 years just to get Jennifer my daughter assessed and I have just got respite of 26 days a year but so far I am allowed a weekend every 2 months. After 8 years you become very good at shouting for your family and because Social services refused to assess Jennifer. I went outside the services and threatened legal action and I have found that I get listened to a little bit better not much better but better.
Just keep your chin up and I think you and your family are doing absolutely fantastic with Toby. Maybe when Toby gets settle with the 6 hours it may be increased.
Luv Jane XX
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Hi Julie
s earlier posters said, don,t put up with what they offered. Be pushy, tell them what you want. My son goes to overnight to arespite centre and has done since he was 7. He has moderate autism. the ones who make a noise do get what they need. we had some behavioral issues with last year and I was not coping and I made. It very clear thqt if I did not get thehelp ineeded, i would not continue. I got what I wanted very quickly
What would they do with Toby if you didnot care for him.
Karnak
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Six hours a month sounds rather pathetic but I hope he enjoys going. The cushions look lovely together.
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I love your cushions – so vintage, yet so fresh and clean looking!
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