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
little cotton rabbits 
So sorry to read that the lockdown has increased the difficulties of Toby’s transition to life in the adult care system. You are all in my thoughts and prayers as you negotiate the rocky road ahead. I hope that the joy your beautifully crafted animals give to others can give you some consolation. Knitting and crochet have helped relieve the stresses at many times in my life.
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I read your blog for a while now, attracted by your lovely rabbits. Your patterns taught me how to knit: a small dress is a project that is not too intimidating.
While reading and enjoying your pictures, I also became “ involved” in your life with your son and it breaks my heart to read about the difficulties lockdown brought to you all. I cannot even begin to understand what it must be like. I cán imagine the uncertainty about the future and the hard choices you may have to take, but you can only cross that bridge when it lays before you…..
I do hope things will continue to improve and that you can enjoy the little things every day. I wish you and yours all the best..
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I have a couple of friends with learning disabled adult/almost adult children and know how tough it is for them and their children are not non verbal. I can’t even begin to imagine how it feels for you at the moment. One of them has made the decision that it is time for them to look at residential care for their daughter who is 25 now, partly because of her needs and partly because they are having to accept that they are starting to get older and are struggling more. They don’t want to be in the situation where they have to make a sudden decision and accept the not quite right place as that is all there is available at that time. The nearest I have come to it was accepting that my father needed to go into a care home, mum (in her 80s) was too exhausted to cope much longer but didn’t want to make that decision and I could only help out so much. My parents doctor was lovely and spent a lot of time talking through the decision with mum and I. One of the things that stuck with me was that “dad deserved to have the best care possible” and that mum could no longer provide that.
I am holding you very much in the light and hope that during these last few weeks if school you can have some peaceful time to yourself.
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Julie, I’ve been following for many, many years…since Toby was a young boy and I’ve always admired the grace and calm with which you’ve handled his many challenges. Knowing now what you have gone through during quarantine makes my heart ache for you. I hope that you can find some peace in the next few weeks of the school term and that the summer goes smoothly. The college sounds like a wonderful thing for both you and Toby and I hope that it gives you strength to cope in the future. My thoughts and prayers are with you…always.
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Beautiful photographs, Julie, thank you so much for sharing. Reading your blog helped me put my own difficulties in perspective. Thinking of you and hoping that each day brings its own solutions. You are amazing!
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I have also been following your blog for sometime and in this moment my heart goes out to you for all the resilience and patience you have. My daughter is non-neurotypical with developmental delay, although she is verbal (sometimes too verbal!) and has some independence. She followed a learning for living course for two years after school and really grew in the course of it. She went on to study hospitality for the next two years and was very well looked after. Currently she is on a supported internship at a local hotel but this ends in July. She will turn 25 then and we have no idea yet where she goes from there.
During lockdown she was in and out of her placement (only returning last week for the first time since November) and the effects have been unsettling and profound. She has had scant contact with anyone other than my husband and myself, and a daily well-being call to her job coach. (She doesn’t have friends – her deliberate choice- although people like her.). That isolation has led to meltdowns we had not seen for several years and incidences of her mildly self-harming, cutting chunks out of her hair, cutting up her clothing. I know, I have hidden the scissors now. We have done lots of things to keep her occupied, from walking the length of Hadrian’s wall (virtually) to taking up zoom yoga and loom knitting.
Julie, it is your final paragraph that moves me most of all, because although Mary can be somewhat independent, she still lacks the maturity, confidence and ability to make it alone in the world. And because her challenges are largely hidden ones we fear for her future as you do for Toby. I had hoped that the pandemic would make the world a kinder place: indeed at first there were signs that it could be. I think now that the opportunity for fairness, kindness, compassion has all but disappeared and I am fearful for us all. Maybe “The Reason I Jump” will reach a wide audience and help our children to be better-accepted and fairly-treated for the future.
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I don’t know you but I have great sympathy. I too find comfort in nature. Your photos are lovely and I hope you can continue to walk and find peace in nature. Thank you for sharing.
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Once again your pictures are beautiful, so peaceful and calming. I am keeping you and your family in my prayers. This is one of the biggest issues no one seems to want to address is the mental effects of being locked down. I hope you can find some answers to help your family adjust to this time in our lives.
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I have followed your immense talent for many years and my heart goes out to you and Toby and all that you are dealing with. I’m lifting you both up in my prayers and I’m sure you help many people in this world with your writing and your openness and sharing. Thank you.
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Thank you for your honesty – it cannot have been easy to write those words, although living the reality is no doubt much, much harder.
My brother is severely mentally handicapped (mental age of ~15 months – and he’s 55!) but not autistic, and I know a little of how hard it was for my parents to find accommodation for him that they were happy for him to be in – and he was in a hostel 5 nights a week from the age of 8, and lived away full-time from 13 initially in a large hospital now in a house of 3 with staff.
It wasn’t easy, but he is now very settled and happy, and as well cared for as we can hope. Sometimes there isn’t a good choice, but there is the choice you can live with.
Take care of yourself, and when you can, think about the options for Toby living away, and explore them as fully as you can (a taster week / respite care) – if you know the options in advance, it means should anything happen where Toby needs to be cared for elsewhere with little warning, it doesn’t come as such a huge shock to him which means you have less of a burden too.
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My dear, dear Julie. I have followed your blog for a very long time, and I am feeling overwhelmed for you as you and your family face this difficult transition. I had just been outside walking among my flowers, feeling pretty low for the many losses in my life when I came in to find your new blog post. Let me say that it ALWAYS brings me peace when I read your blog; not because “your troubles make mine seem insignificant”, because all of us have been dealt our own particular issues to manage in life, but instead because it gives me hope. Hope that by sharing, we can allow others to share our burdens, even if just a bit. I am honored that you choose to share with us, your readers.
Your knitting is, as always, remarkable, and in a way I understand how even that has not brought pleasure to you recently. Sometimes we are so saturated with emotion that there is no space for any other activity or feeling to be felt. And your photography always brings me a sense of joy. Thank you for seeing what so many of us miss in the everyday through the lens of your camera.
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Julie- I appreciate you sharing your thoughts and feelings. I can only imagine how difficult this past year has been and the physical and emotional toll it has taken- I live in the US and have worked with students with developmental and learning delays, many of them with Autism. Our education laws in the US require that the schools work with families such as yours to plan ahead fir after graduation. The goal is for all young adults to live as independently as possible. In most instances this means adults may work in very sheltered workshops to out in the community for 10-35 hours/week. Most adults from the sheltered workshops live in small group homes in the community with a trained adult on premises for 24/7. The young adults become comfortable with the routine and consistency. There is a social aspect that provides structured activities based upon the adult’s interests (movies, visits to parks, crafts ,etc….). This is not institutional life by any means. I have not done justice to all our programs can provide. I hope that something similar may be accessible to your Toby.
With my very best wishes, Karen
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I follow your blog a long time ago, because I admire so much your way of looking into life. Although you have your great struggle with Toby, you always try to find the beauty around. When something stressful happens to me I always try to remember your way. And then I think: that’s such a minor struggle mine! Sorry for the not so good english, although I’ve studied at the British Institute and done my Proficiency, but it still is not my main language. And although I understand it quite well, and read a lot, I do not write so often..
Hugs from Lisbon, Portugal
Teresa
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I’m so sorry Julie, that lockdown has intensified things for you and Toby and that sadly the future will present you with even more problems. I do hope you’ll get the help and support you need and deserve.
Your images are beautiful and I’m glad you can find some comfort in nature.
In the meantime I’m sending you a huge hug lovely lady,
V x
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Oh Julie. My heart just breaks for you. Lockdown hasn’t been nearly as long here in the US, but the effects on my own adult son with special needs has been life changing (although nothing so difficult as what you all are dealing with). His mental health suffered so very much and it has changed me as a person as well. I’m also struggling with finding that spark of joy, but I’m hoping that it just takes time to rekindle it again.
You are such a brave and strong person to continue sharing and creating even in the midst of your trial. My hope for you is that Toby’s transition in July will be a good one and that a new, simple routine helps everyone feel better. You are such a wonderful mother to Toby.
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I enjoy your beautiful photos and your style of writing and realise how difficult it must be to write about your precious Toby with all the challenges he brings to your family. Decisions about the future are impossible at the moment in any case , and I can well imagine you are kept awake some nights going round all the options in your head . My little grand daughter has just been diagnosed with autism and she, too, could not understand why the play park wasn’t open and why she couldn’t go to nursery during lockdown. People do not understand how hard it is to explain to a child with limited understanding why something is not possible , and frustration can often manifest itself in physical hitting out – not funny when Toby is a grown adult .
All you can do, as you have said, is to go day to day and cope with what life throws at you. Best wishes to you and your family x
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You are amazing parents and when it’s time to make decisions you will make the right ones for all of you.
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Thank you for your open and heartfelt letter. I pray that in time, the best future option for Toby and the family will become apparent. I’ve always admired how you have handled Toby and his difficulties with grace. For short term relief, I pray that Toby’s transition to college will be easy and that knitting pleasure will come back to you quickly.
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I have a couple of close friends with Autistic sons and I hear of the troubles they are presented with. Your pictures are beautiful and I am still to finish the Rabbit that I started after purchasing one of your patterns a good few years ago.
I hope you find the support that you need and know that you have done an amazing job. I hear and feel the pain and anguish in your words. To love and care so deeply and to know through Toby’s reaction to his actions that it is reciprocated in the only way he knows how. My thoughts are with you all.
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Sending a big hug. x
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As the parent of a 20 year old son that is on the Autism Spectrum with OCD and Anxiety disorder, I feel for you. I have followed for years and by your words, I can tell how stressed and sad you are over the events that have taken place. Like you I worry daily, hourly, what the future holds for my son and I am very optimistic at times and at others terrified. My thoughts are with you as you navigate the coming days and years and just know that those of us out in the e-world are here for you. Please always feel comfortable sharing your feelings and fears.
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Thank you for being so open, always, about your son, his abilities and how they affect him and your family. Your challenges are profound.
I am retired now, but spent my last ten years of lawyering trying to be of assistance to families like yours. While I would never presume to have answers for your particular situation, here are some things I learned along the way:
The first living situation might not be the right one;
It’s important to make the transition to separate living situations while parents can actively oversee it and make any necessary changes;
There is immense parental satisfaction in helping a cognitively challenged child into as independent of a living situation as can work for child and family;
Special staff will come and go, so family monitoring and advocacy will never end;
There will be, but shouldn’t be, some parental guilt feelings as a child in this situation transitions out of the home;
It is often helpful to have specialized legal advocacy, as programs and eligibility requirements can change over time. That’s certainly the case here in the States.
One of my early professional experiences that haunts me to this day concerned a sixty year old, cognitively challenged man whose 80+ year old mother, with whom he had always lived, had died. She had made no plans for hm that anyone could discern, so the state had to assume his custody and make living decisions for him. He was incompetent, had no other family, just wanted to go home, and reminded me of nothing as much as a terrified, spitting cat. I felt so badly for him.
We will never meet, and yet I have some small poor sense of what your lives are like. You’re a good mother, Toby has a great family, and all of you are doing the right thing.
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I really don’t know what to say and I definitely have no advice to offer, all I can say is my heart goes out to you and your family, and I sincerely hope you will all find a way to cope with whatever the future brings. I have the deepest respect and admiration for you for coping the way you do. Hugs to you and your family, and stay safe.
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Just wanted to send you a big virtual hug ❤️
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I’m so sorry to hear of Toby’s struggles with lockdown and his resultant behavioral issues. I formerly worked with autistic, learning-disabled adults in a group home setting, so I know some of what you’re going through, but, of course, not the emotional pain you suffer as his parent. I hope you’ll be able to find a place of peace from which to deal with all this. God bless you and Toby.
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My thoughts are with you
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I want so much to reach out to you and let you know how much I admire your care and love for your son. Your gentle care of Toby has given me patience so many times when I have needed it with the care of my family. I now have three generations under my care and I can understand your concerns with the transitions Toby needs to make, both in the present and for the future. You have educated yourself and so many others in caring for a special needs child, please trust yourself with future decisions, because I know they will be made with love and concern for Toby’s well being. Bless you and your family, and thank you for the inspiration you have provided in sharing your story.
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Julie – I’m so sorry that you have this future worry to contemplate. I have been reading you for years, and have always been impressed with the grace and patience that you portray in what I know to be a difficult situation. I know you and your family will continue to make the very best decisions for Toby as the weeks and years unfold. You have shown that even in the most difficult situations, your love for your son remains the most important thing. This will guide you in the future as well. Sending hugs to you.
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Hugs to you and your family. I absolutely love your blog and your beautiful knitted patterns. Your photos are so inspiring. My thoughts are with you during this difficult time. I hope and pray that things work out for you and your sweet boy.
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Julie, my heart goes out to you all, it must be so very hard. I do so hope that things settle for Toby when he has his two years of college and that you all find the right path afterwards. I have been visiting you here for a long time now and I know how well you care for Toby and how you always do all you can for him. I am so sorry things have been so hard for him over lockdown, I can well understand how frustrating it must be for him not to have his routine in place and not to be able to understand why. I am sending all the hugs, CJ xx
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You sound like amazing parents. Toby is so lucky to have you. Thank you for sharing with us.
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I’m glad you shared your thoughts. I’m glad that you realize your friends here care and you can feel free to express your thoughts out loud. We need to have somewhere/ someone where we can.
To quote Maya Angelou, “ There is no greater agony than bearing an untold story inside you “
Sending a warm hug!
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Julie, I have been following you for years and have always enjoyed reading about your life and looking at your beautiful pictures. Less than one year into my marriage, my husband suffered a brain injury resulting in some mental deficiencies and the mental capacity of an 8 year old. It was very emotionally draining, it has always amazed me that you have shown such strength and patience in dealing with your situation. My heart goes out to you. It did help me to also write and keep a journal. Please feel free to vent. Hang in there. As you can see, you have many people who care about you. Wishing you and your family the best. Take care of yourself. Much love to you
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Julie, for several years now I have visited your site and have knitted your patterns, and both have been such a bright spot in my own life. I am more sorry than I can express at the difficulties you, Toby, and your family have faced, especially in the last year. One of my closest friends has an 18-year-old son with severe Autism and limited verbal abilities, and their family’s journey over the last year sounds VERY similar to yours–even to the physical violence that has been dealt with in the last few months, and the question of what their son will do now that he is graduated from our high school system here in Minnesota. The pain and questioning they have gone through is truly unimaginable–and the same in your family. The amount of care and emotional energy and extra worry and planning and time that you put into your parenting of Toby is beyond what anyone can understand who is not in that situation, and even though it was never your choice to have to deal with all of this, I applaud you for doing everything you can in your capacity to create a beautiful life for Toby. Prayers for him and you, and your family, that the next phase of his life will be adjusted into more easily than expected, and that there will be answers for the next steps. With love and hopes for a very bright future for Toby. . .
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Oh Julie, my heart goes out to all of you. The serenity of your photos and the turmoil I can only imagine you feel. Hugs.
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Dear Julie,
I am so sorry to read how challenging life has been for you, Toby, and your family during lockdown! You always offer such cheery words in your blog and I truly wish I could offer you the same, or somehow make life easier for you all.
Though I’m sure I cannot begin to understand the challenges, I will be sending thoughts of comfort, love, and peace-of-mind to you all.
Your writing today was so very brave! I am certain that other parents, who have similar situations, will have their spirits lifted by your words as it will help them to feel less isolated or alone in this scary and uncertain time.
I hope that you will soon feel less depleted and your resilience and hopefulness will return, along with the pleasure that knitting affords you.
Sending you all the best wishes for you, Toby, and your family in hopes that an easier time is just on the horizon.
xo
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Oh Julie, My heart aches for you and your family. I have followed your blog for years and remember Toby as just a sweet little boy who you have tenderly cared for and loved to this day. My prayer is that you find peace and rest and hope for all in your dear family. Hugs, Maire x
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Я восхищаюсь вами. Держитесь! С вами Бог. Обнимаю. Читаю вас много лет.
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Dear Julie, I will keep you in my thoughts and prayers. I know you will endure and remember what an incredible life you have given Toby, he is so very fortunate to have someone who loves him as much as you do. He loves you just as much, but can only show in his way that might not at times seem so. And thank you for all that you have given us as well and the joy you have brought to all our lives through your personal blog and beautiful knitting. I wish I could be as strong and courageous as you are, life, you indeed inspire me.
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My dear,
Having had a difficult time with my child – in another way, but nevertheless – I would like to gently tell you: to be able to help others, you keed to put the oxygen mask on your own face first. Maybe it would be the best for Toby to live elsewhere, where they can arrange daily routines in the same locations, and the parents visiting as often as possible. Perhaps he would feel himself safe in school-like surroundings, and you could enjoy the walks in the forest, swimming etc. together even more. I wish you all the best!
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Such beautiful photos you shared here Julie
I have followed you for years and admire the pure strength you show with coping with the challenges with Toby. The love of his Mum is so touching. Take my hugs and feel the warmth
❤❤
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You are amazing. Keep sharing, and don’t be afraid to put your hand up and say I need help.
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I’m relatively new to your blog, Julie. I started buying your patterns and knitting your delightful animals in mid-December, 2020. I did not know about your son’s situation until today. All I can say is I wish you could feel the virtual hugs and love that come from so many of your followers. Thank you for all your creativity amongst the stresses of your life. Hugs and love, Julie.
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We care. We want to help. We simply don’t know how. I don’t know what to say. I don’t want to repeat what might have been said. Perhaps my tears speak better than words.
Be well.
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Dear Julie,
Thank you for writting about your feelings for your son. I have followed your blog for years now and it has been because of what you have written that I have taken on the care and education of my grand daughter for 3 days each week. She is autistic, 3 times gifted, and also has attention deficit disorder. She suffers from extreme anxiety, can be very violent when pushed beyound her tolerance bounderies and is also scuicidal.
I took on this role for my son and daughter-in-law because of what you have written regarding what your family have had to cope with. I wanted them to have a fall back position for her. It isn’t easy, as you know, and I also wonder what will her future be. Will she have to be institutionalised in the future? Will she ever be able to return to a normal school? After I die, I’m 76, I know that her parents will be there but what will happen after that?
But I have to live ‘in the moment’. Who knows what tomorrow will bring, I have no control over that. I can only take it one day at a time and find the joy in that day. It doesn’t stop me from worrying about her future but I can appreciate all the good things that each day brings. I have a friend who has a disabled son who is now well in his 50’s. And she has been an inspiration to me on how one can cope.
One of those good things that has come my way is your dog pattern. I am knitting a ‘puggle’ (pug/beagle cross) for her. She loves her dog Nugget so much and your pattern is going to bring her so much pleasure. I think of you and Toby often and send you love and virtual hugs from the other side of the world in Australia.
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Simply sending hugs. x
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So sorry to hear of Toby’s distress. If it helps even a tiny bit, during my years of working with young adults with similar issues to Toby I have seen many settle into supported living and they go on to live very happy lives and seem to flourish. Preventing carer breakdown is vital for both you and your son. Take care of you and thank you for the beauty you produce both photographically and in woolly form x
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Sending love and prayers to you all from Queensland, Australia. x🙏
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Thank you for sharing your struggles. I can’t even imagine how tough it must be for you to cope with Toby and his many needs. Thinking of you and thank you for your wonderful patterns. Your animals are so gorgeous.
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bonjour Julie,
comme beaucoup de commentaires ci-dessus je me reconnais aussi dans vos énormes soucis avec votre fils ( ma fille de 21 ans est handicapée ).C’est courageux d’en parler et utile.
Le confinement a effectivement modifié énormément de choses dans l’organisation de nos vies autours de nos proches si fragiles… Aujourd’hui , avec du recul , j’essaie d’en tirer le positif c’est à dire encore mieux préparer l’avenir de ma fille pour ne plus vivre une telle situation.
Vos photos sont superbes et la nature a ce don d’apaiser.
Vos petits animaux sont adorables et les tricoter apportent beaucoup de bonheur à de nombreuses personnes, alors merci à vous.
continuez à être forte pour Toby, pour vous même et pour vos proches. Je vous souhaite le meilleur.
Bien sincèrement
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Dear Julie, I don’t know what to say but I send you all my love and prayers. Thank you for being so open and thank you for being such a loving, caring person. Thanks for the wonderful pictures, they are like a little holliday to me!
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Hi Julie I wish I could give you a huge hug!! You give so much to us through your patterns, designs & advise & it is so obvious from your blog, that you are an amazing giving loving parent. My prayers & thoughts are with you Julie & I really wish I could do something to ease your worries. Love & hugs Susan Ward.
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Oh Julie………my heart breaks for you. There are no words but to tell you that my prayers are for you. May you have continued strength and patience to cope with Toby. Love to you ♥️
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Dear Julie I am very sad to read of your struggles in lockdown. I have admired the way you have coped in difficult times before over the years of your blogs. I hope you won’t feel my opinion anything other than a genuine desire to help.
You have two children. Your daughter must be so worried about you right now. In time your daughter may have children of her own, your grandchildren. You will want to do the best for them too, tiny and precious, needing your love and protection.
I am sure the staff who care for Toby and who have experience of what to expect in the next phases in his life would not want you and your family to continue to suffer. You have coped with your daughter moving on in her life to university, a form of separation. I hope you would view Toby’s moving on in the same way, you never lose them but it is different. With love and best wishes from Carol x
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Sending you a big hug. Bless you.
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I have been following your blog since I lost my daughter in 2005. Your knitted animals, beautiful photos of the English countryside and
inspiring writings have lifted me up during difficult times. At that time, Toby was only 3 yrs old. I have admired what a dedicated, patient and loving Mom you have been through the years. You have always gone above and beyond to support your son, yet continued to carve out a space of beauty, creativity and peace in your life that is truly remarkable. In addition, you have taken the time to post your beautiful creations, lovely photography and share the incredible challenges of raising your son. Sending you virtual hugs and love from “across the pond”. ❤️
Susan NJ
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I have a cousin that is much like your Toby, but he didn’t have parents that were as attentive as you have been with your son. Where we live, we have what are called group homes where adults with severe neurological disorders can live with a full time staff. They have a caregiver that is with them all the time, sometimes two caregivers if necessary. When my cousin turned 18 he qualified for one of these homes and flourished. He talks somewhat now, still not very understandable and he has a job at a local place called The Opportunity Workshop. He loves it. It was so hard trying to figure out what was best for him, especially when neither of his parents gave a darn about him. Thankfully, my mother stepped in and got him where he is now. He was at lose ends wandering the small town he had grown up in and getting into some real trouble with people taking advantage of him. Now he’s doing so well. Don’t give up hope! You’ve done a wonderful job with him and have NOTHING to be ashamed of if you are unable to care for him into his adulthood. We parents don’t stay young forever and what we could take 10 years ago from a child is completely different now as older adults and a grown child. Praying for you as you work towards a resolution and that it will be a perfect fit for your Toby.
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My heart goes out to you and your family.
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As my dear sweet mother would say in troubled times – each day a new door opens, close the previous ones behind you and hope that the new day is better. Thoughts and prayers are always with you now and for the decisions in the future.
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Sending my very best hug….thank you for sharing…..the right solution, fir you and your family, will come to you I am sure.
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I’m so sorry for the distress lockdown has caused to you and your family. My heart breaks for all those who have been unable to cope with this period in our history. Especially those who can’t understand the changes.
Sending you thoughts and support in the form you most need it. Be kind to yourself x
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Heartfelt appreciation for all you do. May your days be filled with bumblebees!
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Always look forward to your lovely photographs of the countryside. They are so uplifting and show your clear artistic sense.
We hope that you can move forward this summer with confidence and hope. Your honesty and openness are a blessing to many people.
May God bless you and your family.
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Hello,
I’ve never commented before, but followed your beautiful blog for years.
I just wanted you to know Mum-to-Mum that I hear you and feel you.
I have two daughters with Angelman Syndrome, both are non verbal and both have severe learning disabilities. My Angels are 23 and 18 and have both left their Special Needs School and are now supported at an Adult Day Services placement, which is wonderful. It was a huge and frightening move to Adult Services. Transition was hard and soul destroying, having to fight for every little bit of help and support, but once ‘handed over’ to Adult Services we were fortunate to be assigned a wonderful Adult Social Worker who ‘fixed’ everything and the support in place for both our Angels is now excellent.
All was going well until Lockdown hit and our support care package was dramatically reduced overnight due to restrictions and bubbles (funding is still in place so eventually we hope to return back to our original care plans)
Lockdown has been incredibly hard, everything that you’ve experienced and expressed so well has happened here too, changes in behaviour, anxiety, emotional well-being, seizure activity… the whole kit and kaboodle! I’ve cried and felt heartbroken, questioned my role as a Mother and just felt fog-brained and drained of all reasonable thought at times. But we keep going because we are needed and no one knows, understands or loves our children like we do.
And like you the future, our future and our Angels future, feels more precarious and frightening than ever.
I have no profound solution to our situations, we will wake in the morning with the same worries and concerns as we went to sleep with. We do need to take moments to breathe where we can find the strength to carry on, and we will carry on because that’s what we do. We love our children.
I just wanted you to know that I hear you and feel you …
sending you lots of love and hugs Wendy xXx
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Hi Julie, I’ve been reading your blog for so long now, I vividly recall knitting your cupcakes for my little girl (now 15!) and enjoying your beautiful photos and writing. I’m so sorry to hear how awful the lockdowns have been for you. What a terrible 18 months it has been for the world – forward planning is next to impossible as we really can’t know or control how this is all going to pan out. Your plan to find joy where you can in the little things is inspiring. Is there anything more beautiful than the English countryside in summer? I hope you keep popping in from time to time, I look forward to your posts. Warmest regards from Sydney, Australia, Anne x
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Hi Julie, I’m sending you hugs, such a difficult time for many special needs children and their families. Here in Australia, although we haven’t suffered the huge numbers others have we have still had a number of lockdowns, after a very long lockdown in Melbourne our2nd lockdown saw special needs schools remain open as the strain and pressure on the children, and their families was too great. I’m sorry that didn’t happen in the UK as that would have made it easier.
Of course you imagined Toby with you forever, that’s only natural, try not to think too much about the future, but know that if Toby doesn’t remain in the family home it’s not from lack of love it is because of love.
Take care of yourself, really, do take care 😘
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Julie,
I am so sorry that you are going through more than the already difficulties that daily life can bring. Please know that you are in the prayers of many, many followers and that God will definitely help you get through this.
Thank you for sharing pictures of your walk – what a breath of fresh air (literally) and what we miss if we don’t pay attention to our surroundings. I hope the quiet and beauty refreshed your heart and mind and gave you the needed push to continue with the daily rote of caring for someone that does not want to hurt you, even as he does. I truly hope that you have a good support system around you – there will come a time when you will no longer be able to deal with the stress and problem of caring for Toby, hard as it is to realize that. Again, God is with you always, in every situation and is just a prayer away.
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My friend, I read your post and my heart understands some of the pain you’re experiencing. Even though my grown child has a different disorder, I’ve shared some of what you’re dealing with and I want you to know that you are not alone. Nothing hurts more than seeing your child hurt and worrying for their future. Please don’t lose hope. Our God loves us. I don’t know why we have to go through this darkness, but I know that God hears our prayers. There is a light ahead of us. The pain today is temporary. Please hold on. Like you, there are times when my mind can’t focus on stitching or take pleasure in it. Thoses are the times I just need to rest my soul and be still. My name is Linda and you can email me anytime. Sending you my love.
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Big Big Love to you. Thank you for sharing ❤
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I don’t know how you do it, Julie. A mother’s love is powerful, but you’ve given up a huge portion of your life dealing with your son. Don’t let it destroy you. We have a child with Downs in our extended family. She’s in her mid 20s now and doing quite well living in a home with other Downs adults. They have lots of activities, excellent supervision, and most likely Carlie will remain there for the rest of her life. Her mother died last year, but she still has family who looks in on her and her brother talks to her on the phone every night. She sounds more capable than Tobi, but like him, she’s had many a temper tantrum and could tackle her mom to the floor at times when she was upset. Personally, I don’t think I could deal with it, so my admiration for you continues to grow. Hang in there! You’re SO talented, and I enjoy hearing about your interesting life. Thanks for sharing.
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Hugs, and best wishes to you and all the Family. You and your H are doing an amazing job in raising your boy. Look after yourselves as things move forward.for Toby. Best wishes to you all , stay safe and well. 😘
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Thank you for sharing your story Julie. I can’t imagine how incredibly difficult this past year has been for you and all the others in similar situations. I hope Toby settles back into school.
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Oh Julie!
I feel very flattered that you are able to share your thoughts with us – it is very humbling.
I’ve read your blog for years and a little rabbit egg cosy has spent a long time on a shelf in my kitchen – so much so that I and many others feel as if we know you, yet can do nothing to help you except to reassure you that we’re thinking of you as you cope with what life has dealt you and your family. I hope your daughter is well.
Whatever choice you make for Toby in the future must be the right one for you all and we will continue to keep up with your news and, of course, lovely knitting and splendid photographs.
Thank you for including us in all you do.
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Hope the gradual release of lockdown will continue to help you all to cope and make life a little more settled for you.
Your photographs are beautiful Julie thanks for sharing them.
Looking forward to starting my new little doggie pattern! Thank you for that. Now will it be a pink or turquoise dress?
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Thinking of you Julie stay strong x
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Dear Julie. I would like to join with the other comments and send you hugs and love. You have given Toby so much love and care every day of his life so far and have greatly admired you for your dedication. Poor Toby he must have been bewildered during lockdown. It was a very difficult time for many of us for different reasons and it is taking some time to even carry out the normal routine things, for me. I feel broken myself after it all and the continuing effects as they play out at work and home. I can’t begin to imagine how challenging the lockdown would have been for your family so I am instead sending love and wishing you some peace when you can get it. One day at a time for us all at present. Thanks for sharing too, that took courage. Sandra xxx
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Oh lovely I can imagine your anguish. You deal with your daily expectations beautifully and handle things well, so well. It’s no surprise that behavioural challenges, especially when physical, would fill you with fear and possibly dread. You’ve a difficult enough path with a pandemic and all its limitations added. I do hope Toby adapts and settles well when he begins college and that you and your family get help, guidance and advise for the following stages. Plan for the future and live in the moment, it’s all you can do.
Wishing you strength and resilience. Make the most of the time till the end of this term and thank you for the gorgeous photos that you’ve shared today and in the past. I look forward to seeing your knitted animals and your glorious patterns. I longingly look at those and am in awe of your talent.
Sending a virtual hug, a pot of arnica and tea on tap x
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Dear Julie,
I don’t have children so I don’t know the love that a mother has for her children. I do know that I feel for you and what you and your family are going through. Looking from the outside I don’t know how you cope with what you do. It can’t be a healthy situation and I worry about the effect it will have on you in the long term. Your own health. I wonder if Toby might be better in a long term care facility where things would stay the same for him on a daily basis. Being with people who know how to handle his outbursts. It wouldn’t be easy in the beginning but over time it could benefit him in the long run.
There is a question I ask myself when I’m working through things. It’s do I see myself living like this for the rest of my life. If the answer no I go about making changes. I think looking at options now and figuring out out what would work when that time comes would be a first priority now.
You bring so much joy to all of us with your beautiful patterns that we are addicted to in a good way. I admire your ability to find the beautiful no matter what is going on in your life. I hope the best for you and your family and a future that looks bright.
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Dear Julie, just read your comments, and admire how strong you are to take the time to write how you are feeling at this hard time in your life. As in the other comments your pictures are beautiful, your knitting is amazing. I hope your daughter is doing well you must be so proud of her as well. I do hope things get a bit easier for you with Toby, I send my wishes to you and will always read your story. You take care, and look forward to more when you can. x Sue
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Much love and prayers to you. As I logged on to the blog and saw the beautiful pictures, I thought to myself: How beautiful! What a wonderful place to live! No wonder she is so creative; surrounded by all this beauty. It just goes to show that we don’t know the personal storms that our internet friends are enduring. Thank you for sharing something so personal with us. I have a friend with an older autistic son and know of the problems you describe when their orderly world is turned upside down and her fears for his future. Know this: I will faithfully pray for you and your family. I have loved each and every (quite alot!) of the patterns you have shared and the joy they bring. Knowing the difficulties you face, makes them all the more special! Love and prayers! Sue
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Bless your heart….you are an amazing woman that has blessed so many lives in my family….12 to be exact…i knitted your animals for all of my grand babies….they love them…they, the animals protect them every night….. have to knit 2 more….more babies coming…..please know that my prayers are with you….thank you for your life…your peace…your goodness.
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Awww Julie, I’m so sorry. You are amazing though — in the midst of your struggles, you bring us such beautiful photos and adorable patterns. Toby is so lucky to have such loving, caring parents. I hope that you’ll be able to find some strength and peace in the coming days — and carve out some time for yourself and your husband. Thinking of you XOXO.
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Julie, we can all associate with having almost insurmountable challenges, but yours are as severe as Toby’s challenges are.
Your perseverance and patience and calm within the storm is an inspiration.
We see beauty thru your eyes. You give so beautifully to others. Please never stop.
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Wow! I read your post with tears streaming down my face.
You are a talented designer and prolific knitter, gifted photographer, articulate writer and an exceptional and inspirational mother and, in the midst of all your concerns, you are still thinking of your ‘knitting community’.
You are stronger than you know and you will make the right decisions for everyone at the right time. I pray that you and your family will find the days ahead easier to bear knowing that there are many, many people sending you and yours their love and best wishes.
Thank you so much for all you do.
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It was heartbreaking to read of Toby’s difficulties with lockdown. I’m certain that whatever happens in the future, you will do the right thing for Toby and the rest of your family too. I admire you so much Julie, and I’m happy to be part of something that gives you an outlet for your artistic talent, and that hopefully gives you as much pleasure as it does to us.
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I have only come across your blog today on my bloglovin’ feed and was so deeply touched by this entry. My family struggled with a child with mental health issues so I understand your love, pain and concern for the future. You have found a little place in my heart and I will keep you in my prayers. God’s blessings to all in your family.
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This is heartbreaking to read but I’m so glad you shared it. I have 4 healthy (mostly) adult children who have partners and their own children (4 grands). I never dwell on what life is like for people who have children with disabilities. I just worry about all the things that a mom worries about…are they happy in their jobs, are they making enough money to pay rent and buy food, do their partners treat them well, do they treat their partners well, are they being good citizens? I think you sharing your struggles that are, honestly so extreme, is a great wake up call for the rest of us and if it helps others with similar struggles then your sharing is not in vain. I went through a terrible divorce many years ago and suffered so much in the beginning because I felt so alone. None of my friends were divorced, my parents have been together 55 (coming up to 56 years in August) I was just alone in my misery. I joined a divorce care group at my church and although it was still the most painful time of my life, I was understood and I knew that each person in the room knew the pain I was in. I finally had a community. You may have helped someone else who never posts a comment or reaches out, please keep on sharing. You have a way of soothing others even when you are struggling yourself. I appreciate you very much!
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I can only try to imagine how daunting and frightening the future is for you facing these changes coming your way and I have no real words of wisdom to share, but know that someone way over in Michigan is thinking of you!
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Sending you a big hug. You bring so much joy to all of us knitters, and to all the people who are the recipients of the LCRs we make. I hope that life calms down a little and that you are able to have some “me” time to take care of yourself – one cannot pour from an empty cup and your own physical and mental wellbeing are no less important than that of those you love. You are in my thoughts and prayers xx
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Julie, you are as close to a saint as I can imagine. The stress and worry must be agony for you and the only thing that comforts me a little for you are those wonderful photos of the path through the woods which look like the kind of paradise which you so richly deserve. With all my love and thanks for the pleasure which you have brought to all your followers, Suzanne
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Julie,
I read your post and I so wanted to comfort you. I worked as a special education teacher and worked with students who were very different. I watched the children grow in adult bodies without adult minds. Most were far stronger than their parents. Many of these students had multiple issues involving hearing and vision as well. Even with these issues the injuries inflicted were very accurate. Their parents were often valiant and the bravest of the brave. In our system there was not enough support and most children were institutionalised. You have done so well to keep your young man in a loving home and you should be applauded for that. I wish you all the best for the days ahead,
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Julie- I’m very sad to hear you have to go through such turmoil in the strong and loving desire to help your son. I’m especially sad because you and your little cuddly animals have brought such delight and joy, just by the making of them, into our home and for one little girl in her play. (So far.) I hope you have a good support group and helpful therapists to help you and your family.
You share beauty with your creations, so please accept part of this blessing, which I find helpful: On the day when the weight deadens on your shoulders
and you stumble, may the clay dance to balance you. . .
From Beannacht by John O’Donohue
There is more to it and it gets even better in my opinion and I’m sure you can find it if it resonates with you.
All the best-
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Dear Julie, you are doing the most amazing job with your dear son. Please though remember he needs you to be able to watch out for him and get him settled for when you are no longer there or able to care for him. If he harms you, possibly irreparably, he will not have you there, and as he would not have meant to hurt you, will not understand why you are no longer there. My cousin who also has a special needs son, has taken the step to have him settled in a caring home where he will be looked after, she is safe and he still has her. He has a new routine with 24 hour care, and has her to make sure he is ok. If he stays being able to harm you, then you may end up with him and your daughter losing their Mum. I am so sorry lockdown produced such a horriby traumatic time for you all. many many blessings, Leonie (Tasmania)
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Hola, buen día. Leí cuidadosamente tu relato, gracias por compartir tus sentimientos, te envío un abrazo llenito de cariño y buenas energías, desde Santiago de Chile
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I can’t begin to understand what your family must have endured during lockdown, I work in a small primary school and the children with and without special needs had a tough time adapting but to have such severe learning difficulties it must be very hard on your son and yourselves. I do hope he settles into collage in September. As for yourself, I am glad you are able to take some time out and relax sometimes, I know you need to keep yourself well to be of any use to others. Take care
Lyn xxx
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Just wanted to send my best wishes to you and your family. It is very brave of you to write about your life and it opens my mind and heart to know there are such wonderful people like you in the world. Take care and thank you for sharing.
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Hi Julie, I am new to your blog but already have several of your patterns… I can’t even begin to imagine the struggles you have been facing. Reading this post made my heart hurt for you. You sound like such a lovely mother and I pray that you will all find the comfort and healing that I am sure you are all in need of. Take care of yourself so that you may continue to take care of him…..and seek help when you need it. Sending love and hugs your way!!!
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Dearest Julie, a link brought me to you, gasping at the freedom of stitching such surprising little treasures….reading about your Toby, broke my heart. We never know what discomfort Covid has brought to so many of us, especially those who do not understand the voids of societal need for routines. We all have a story don’t we, each one of us finds an escape to our make believe world to allow us some significance and purpose to our reality. What a blessing that you stitch such whimsical “dolls” so that many of us can share your passion for being. Your photography, your words spilling on your page allows us to feel the content and sometimes woes of your most precious world. even though we are miles apart, the connection heart to heart is both felt. May this season bring you such internal blessings of the many gifts that are within your core….you are JOY.
Form a lady in Canada
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Julie my heart goes out to you. Your amazing strength, grace and ability to write so beautifully and share with others shows wonderful talent plus added to this is your stunning knitting. I too have followed your blog for a number of years and I can only hope that you gain strength in knowing that others are thinking of you and have you in their prayers.
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You are an inspiration, allow others to care for you too, sometimes it is hard to put you hand up, but often you can be astounded by the willingness of caring people to relieve your burdens. Keep creating your gorgeous animals, we all love them.
Sending you many good wishes.
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HI Julie
I have Malcolm a young bloke similar to your Toby. He has severe ASD and an intellectual disability too.My son has gone into supported accommodation paid for by the NDIS here in Australia. As I am early 60s and my husband older we thought it best he got use to it before we got too old to care for him. It took a lot of planning and a good care provider but so far it is working out. For us it is th ebest thing as I honestly cannot do full time 24/7 care for anyone anymore. He comes home ot us one weekend a fortnight, a sort of reverse respite. My advice is to look into some future planning and accommodation options for him whilst you are able, We have some more long term planning ot do but I feel we have made good start, Remember you and your husband are entitled ot a life too.
Karna
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