Little Cotton Rabbits

Spring into summer

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

The last few weeks have been even more of a roller-coaster ride than usual here. There have been quite deep lows; Toby's challenging behaviours have been gradually worsening for a while now and the episodes of his self-injuring and violent behaviour have been escalating. He's been sent home from college on 3 separate occasions for injuring staff and I currently have multi-coloured grip bruises on both of my forearms to add to my growing collection. Like many other families caring for offspring with severe learning and behavioural difficulties, we live with the constant distressing threat of domestic violence from our own child. Working out what is happening with him is an almost impossible task and we've spent so much of our recent free time filling out ABC (antecedent, behaviour, consequence) charts and forensically unpicking details of incidents. On top of that I've had food poisoning, though happily short-lived and thankfully in the past now.

But it's not been all bad, we've had big highs too, the biggest being Amy passing her driving test first time. We are delighted for her and the newfound independence this gives her. She's now driving herself to work each day, which has made my early mornings so much easier and has given her such a confidence boost. 

And as always nature is such a balm for a troubled heart so I've been out and about soaking up the peace and calm that it always brings me. Hawthorn blossom and wild roses, white nettles and cow parsley, buttercups and butterflies and so much green, more shades than have ever been named or mixed on a painter's palette. May and early June are abundant with much appreciated beauty.

I've also been visiting the long horn cattle regularly, study field trips for my in progress cow pattern, but also delightfully entertaining as they are all such characters and there are 5 beautiful calves this year.

And seeing kit the fox is always a big high for me, she often seems to turn up when I'm feeling low and the privilege of her visits lifts me enormously. And yes, she did sniff my camera lens!

There's one more week until Toby finishes college for this academic year and then he'll be off for just over 2 months so we're planning very calm and predictable routines which we're hoping will help him find a calmer place within himself. I hope to be back periodically over the summer months, but as he'll be my main focus I might not get as much chance to hang out here as I'd like.

Until next time I hope you have a good July and August and that you too find ways to temper any challenges you are facing with something that brings you joy, J x

 

 

Longing for rain

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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We are longing for rain here and we British are not accustomed to making such statements about the weather, on the contrary we're usually characterised by carrying our umbrellas everywhere and complaining about it being too wet. It has however been so very hot and dry here for the last month and with no rain in the forecast for the next few weeks we are longing for a torrential downpour, though even a light shower would be most welcome. The land is utterly parched and out in the woods the leaves have crisped, turned yellow and fallen, the blackberries are already ripening in the hedgerows and acorns are already well on the way to dropping - as though autumn has already arrived. My pictures in the previous post of the countryside in June now prompt me to feel nostalgic for the green and lush growth that we had throughout the Spring. Everything is now baked dry, bleached out and wizened by the sun and the seasons seem to be all out of kilter. Though on a positive note there have been some amazing sunsets recently.

We're now half way through Toby's long summer break from college and we have fallen into a comfortable routine. In the mornings he chooses to stay in bed with his breakfast on a tray and his musical books and duplo to play with. Once he decides to get up he and I head off for a 2-3 mile walk and a picnic lunch. It's lovely spending time with him outdoors - he loves being outside and is usually at his best, especially when we have a quiet walk and don't encounter many people or dogs. It's a nice time together and we've mainly walked near to lakes and rivers where it's a still green and is a little cooler.

I had a couple of objectives to work on with him this summer and those are going well. Firstly I wanted to get him used to carrying his own rucksack with his snack and water bottle inside, that way my backpack isn't as laden and heavy and I don't get so worn out at the end of our walks. That has gone really well and he's now completely used to carrying his own supplies in his backpack - something I'll be so grateful for in the winter when he'll also be able to carrying the layers of clothing that he always removes on our winter walks.

My second objective is to get him to choose when to take off his ear defenders and hat without needing to be prompted. He always wears them whenever we go out anywhere as they help him cope with sensory overload, which he frequently struggles with and which often freezes him to the spot or results in a meltdown. When it is quiet and calm (with no barking dogs or human noise) he is relaxed enough to do without them and it's nice to see him coping without them for at least part of our daily walks.

Thirdly I'm trying to get him used to me stopping to take pictures of things. This is something that has always distressed him and so up to now it's something I've not often done. But being able to take pictures will make our walks more fulfilling and enjoyable for me and so with my eye on future life after college when he'll be my constant walking companion I've decided to start what will probably be a long process, so far with mixed results, though as you can see I have managed to get a few pictures on our recent walks.

On the knitting front there's not much to show, my fingers get all fat and fumbly in the hot weather but in between looking after Toby's every need I am slowly working on small versions of some of my animal patterns and also on some sweaters, coats and cardis for the smaller 7 inch sized animals. Once Toby is back into his term time routine in September I'll be free to step up the pace on these patterns and will keep you posted here. 

Hopefully see you again soonish, 'til then be well and happy x

 

 

Some personal thoughts on the effect of lockdown

 

If you've been a regular visitor here for a while, you'll know that my blog posts sometimes become a bit less frequent and that it's often a sign that things are not going too well with my son Toby. The truth is that I am struggling a little at the moment due to the accumulative effect of lockdown on Toby and our family. I've gone into more detail below but I don't expect everyone will want to read that. In part it helps me to write it down and I think it helps others in the same position - I know many other parents who regularly experience violent behaviour from their special needs child and it does help to know you're not the only one going through this. 

Anyway, there's no requirement to read further,  I do however hope that everyone will enjoy the pictures here of the English countryside in early summer :) Walking on my own with my camera lifts my spirits - quietly paying attention to the sounds of birdsong and the wind in the trees, the smells of earth and flowers, the feel of the sun on my skin, and clearing my mind of everything but what I'm experiencing in that moment. And I truly hope that you have something in your life that brings you a similar sense of peace and pleasure, whatever struggles you are or have been going through xxx

PS: I may not be blogging as regularly as before but normal knitting service will resume soon. I have got more patterns planned and I have all those knitted dogs that I'm slowly finishing off and, because it's been so long since I last did one, I think a giveaway is on the cards.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

The effect of Lockdown on Toby, a non-verbal 19 year old with autism, severe learning difficulties and extreme behavioural issues:

At the moment Toby is actually fairly well settled, he's back at school and that has helped him enormously. However at the beginning of lockdown last year things were very different. It was a tough time for him (and for us) as all of a sudden every routine underpinning his world stopped at once.

Toby is non-verbal and has severe learning difficulties along with his autism, which means he could not ask what was happening or understand why he could no longer go to school or his respite club, or go swimming or eat in McDonalds.  We couldn't help him to understand for how long this would last, nor could we lessen the extreme anxiety that this change brought him. As a result his behaviour deteriorated badly and he started having big dramatic meltdowns and self injuring much more frequently. He also started being violent to us, and let me say that being afraid of your child hurting you is a very difficult thing to deal with. We've been through a patch like this before when he was 10, but he was smaller than me then and not as strong. Nowadays he's 6 ft tall, 14 stone and very strong indeed, and once he gets a grip on you there's no breaking free. Everyone who has worked with Toby knows him as a gentle giant, and when everything in his universe is predictable and familiar he really is, and although he is very sensitive and easily upset, he is usually most likely to hurt himself when he is distressed and not others. So the fact that he has physically hurt us numerous times is an indication of the depth of his distress caused by the monumental changes to his daily life.

One of the things I've found hardest is trying not to react to the physical pain and emotional hurt. If I cry out in pain or burst into tears Toby becomes even more distressed and his self injuring then escalates, biting his hand with all his might and punching himself in the head - perhaps indicating some understanding that he's done something wrong or that he feels bad in some way at causing pain and distress. So after he's lashed out at me I check that he's safe where he is and remove myself from the situation, go off for a little cry and rub some arnica into my bruises, make a cup of tea and try and supress my emotions so that we can dissipate the intense situation and move on with our day. In this kind of daily crisis you just do what you can to get through it and you try not to wonder about how long it will last. You close off the day at bedtime and open a new one each morning, trying to stay positive and hopeful that the day will be a better one. And I am relieved to now be able to say that the days are much better recently and now that he is settled back into the routine of school again, he's much calmer overall, despite some of his favourite activities still being off limits.

But, the experience has taken it's toll on me and I'm feeling less resilient, less hopeful about the future and rather worn down and depleted. It's making daily life hard some days and even knitting has lost a little of it's pleasure for me at the moment. I know that I'll be OK in time but that's something we no longer have much of, as we're now in the last ever 5 weeks of Toby's school life - he leaves towards the end of July, after almost 15 years in the same severe learning difficulty school and frankly I am terrified about the change that this will bring. I feel that life has taken on the ominous quality of living in the eye of a storm - the stresses and difficulties caused by the lockdown mostly behind us, and ahead of us the uncertainty and adjustments of a whole new routine, as Toby leaves the safe familiarity of school behind.

There is hope however. In September he will start a 2 year college course for young adults with severe learning difficulties, called Learning for Living. He'll have 1:1 support there and will go 4 days a week in term time. Once he has settled there (and we know it will be rocky to start with) we hope that we'll have a little more calm time before the biggest challenge of all, which will come after he leaves college.

I was once so very certain that after school and college Toby would stay living with us for as long as we were healthy enough to care for him and that we would fill his life with everything that he enjoys and takes pleasure from, forming our daily routine around his needs as we always have. I think that lockdown has frightened me so much because it has shaken my faith in that certainty and introduced the possibility that we may not be able to cope if factors outside of our control remove our ability to provide what he needs. My aim for now is to try and leave thoughts of the future for when it arrives and try to focus on finding small and fortifying pleasures in my days so that I can get myself back on an even keel and be useful to Toby when he's going to need me most.

Thanks so much for reading x

 

A gift of time

 

 

Well, it's almost Christmas and so I'm going to sign off here for a couple of weeks. I have all of the presents for Amy and Toby wrapped, the larder and fridge are well stocked, the log pile is full and the christmas tree is up and decorated, so I think I'm organised. I've not had to gift shop for H as it's been years since we bought Christmas gifts for eachother - we learnt quite early on that he doesn't know much about yarn and I know even less about bicycle chain sets and derailleurs. So it was by mutual agreement that we decided to buy our own gifts at Christmastime. This year he's looking forward to using a new set of titanium spoked wheels and I'm going to be enjoying these goodies...

 

 

Devotions, The selected poems of Mary Oliver;

heavenly smelling 'resurrection' Aesop handcream;

beautifully bound Slightly Foxed editions of Adrian Bell's triology of books 1920's farming life in rural Suffolk ;

soothingly tactile mug for tea from Andrea Roman, A R Ceramics;

Viola yarn, organic Merino DK in 'Silver Birch' and Merino fingering in 'Rosehip' from Loop London.

 

However, the gift that we do always give to each other is one far more precious than any material possesions, and that is time. Over the Christmas period, when Toby is off from the routine of school, things can get intense and wearying and so each of us makes sure that the other one has at least 2 hours of free time each day, time when the other person is responsible for the constant supervision that Toby needs. For H this might be going out cycling or spending time up in the attic playing a computer game. And for me this sometimes means going out for a wood walk alone - seeking the peace that I always find in quiet natural spaces; sometimes it might be time for a warm bath (though often that doesn't work out too well if Toby hears the taps running as it turns into Toby-bath-time instead, especially if there are scented bubbles involved); and sometimes it's just space within the busyness of the day to sit quietly listening to music or watching a film and having some uninterrupted knitting time at home while H takes Toby out.

Over the next 2 weeks I'll be looking forward to my little peaceful parcels of 'me-time' and curling up with one of these books, or casting on some mittens with some of this yarn. But before our holidays begin I need to go and pick up Amy from uni and then we can start our festive time altogether.

And with that thought, I'm going to leave you with the wish that your festive celebrations, whatever they may be, are full of small joys and that you are surrounded by those you love most and share many tender and happy times with them,

with love and my warmest best wishes to you for the holidays and for the bright new decade that awaits us,

J xxxx

 

Eighteen

 

 

He may not be able to speak a word, dress himself, understand dangers or resist custard creams.

He may be awake each and every night, badly bite himself when stressed, strip all the beds 5 times a day and put everything he finds on the floor in his mouth.

He may need constant, vigilant supervision just to keep him safe and, due to the severity of his autism, will never be able to live independently, build a career or find a partner to love,

but,

He is one of the worlds truly innocent and gentle souls, free from malice, free from duplicity and wholly loveable and it is my greatest privilege to be his protector, his advocate and his mum,

Happy 18th birthday sweet Toby

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Thank you all so very much for your kind and thoughtful comments, emails and direct messages wishing Toby a happy birthday. He had a lovely afternoon full of the simple pleasures that make him happiest; balloons, cake, lego, sensory toys, curry for dinner, salted caramel ice-cream for pudding and a 'disco' in the evening - he likes dancing by himself with the lights off and the disco ball on!

Thank you again for all of your kind good wishes x