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
