Well here we are again at the beginning of a new year, I hope it has started well for you.
We're doing quite well here, Toby coped with going back to college yesterday and the much earlier start to his days and I've been slowly but steadily ticking things off my to do list. At the moment all of my focus is on preparing for the cliff edge that we currently face at the end of June when Toby's college placement finishes. That will mark the end of his 20 years in 'education' and a humungous change for our family. I'm spending all of my available time trying to put in place support and community activities for him so that he can have some meaningful activities in his life outside of his home here and that I can continue to have time in which to work on patterns and earn a living.
We've had no support of any kind since he turned 18 and so have had to begin all over again with preliminary assessments. If you have ever gone through the process of getting a care assessment and putting in place ongoing care for a loved one you will already know about the mountainous burden of paperwork and the enormity of the continuing task, from setting up new bank accounts to manage direct payments; accounting for every penny spent; interviewing, screening via DBS checks and training personal assistants to manage his needs; researching, visiting and engaging placements for day care. It is all down to families to undertake and organise and is utterly daunting and exhausting. This week has been all about recording on paper the struggle that Toby has with every day life, and it's really laid me low to bring into sharp focus and put into words everything about his condition that limits his life and the enormous impact that has on our family.
So I am trying my hardest to just concentrate on one small step at a time, and have had to make a very conscious effort to focus on the small positives that have come my way so far this year. I'm sharing them here mostly to remind myself that often it's the small things that lift a moment from despair to delight.
- I have a new garden friend, Bob D. Robin, who flies down to the garden table each morning at dawn when I'm preparing breakfast for the chickens, he gets a pinch of sunflower seeds as a thank you for brightening the start of my day with his beautiful song, sung from the topmost branch of the old plum tree.
- Kit the fox is still visiting, very sporadically over the autumn but a little more frequently these last couple of weeks, though mostly after dark so it's been hard to get pictures of her. She looks well and has a thick and fluffy winter coat. It's coming up to mating time so it will be interesting to see if she has a litter this year and whether she visits more frequently if she falls pregnant.
- Sunrises and sunsets, closer together at this time of year with the short winter days, always have the capacity to bring joy and the vibrant colours splashed across the sky are captivating to watch. I often stand outside with a cup of tea in hand and just enjoy the unfolding spectacle.
- The weather here has been so mild, wet and windy so far this winter but the coming week sees a change to colder, brighter days so I'm hoping to get out with my camera and find the first snowdrops. The anticipation of seeing their beauty is a small joy at the moment too.
- Looking back over the pictures that I took during 2023 has brought a lot of pleasure too, the first picture above is a mosaic of a few of my favourites
I hope that you are finding some small joys in your days too and if you're fearful about impending events in your life this year, I hope that you're finding ways to move forward with a hopeful heart,
See you soon, J x
little cotton rabbits 
I’m sorry that you’re having to go through such a difficult process. I hope that you are able to arrange some activities for Toby and that it turns out to be a good year for you all. You are in my thoughts. CJ xxxxx
I love your photograph posts, what a great coffee table book they would make.
Keeping you and your family in my prayers as you move to the next phase in Toby’s life.
It’s always a joy to read your posts and to watch your beautiful pictures. An happy new year to you and your family from Firenze-Italy
Heartfelt hugs sent to you as you navagate Toby’s new norm. Hoping you are able to find the perfect activities for him.
Sorry life is throwing you a curved ball at the minute Julie … all very well pushing the onus on to the parents but if they’d make these forms easier to navigate it would help all families such as your own.
So glad though you’re finding joy in the everyday … mother nature is good for the soul!
Wishing you a happy and peaceful new year.
V x
I always love reading your posts and seeing your beautiful pictures. Your pictures always remind me of my favorite poems. And when I knit your sweet friends, you are always in my thoughts. I know you and Toby will find a new joy togegher. I’m praying for you. Have a happy New Year! Love from Chicago.
I always look forward to your posts especially the gorgeous photos. They remind me of the beautiful Hampshire that I left behind many moons ago and that I still miss especially in the spring when the primroses and bluebells are blooming. You always remind me to appreciate the beauty in everyday things in nature. I hope you find a new happy normal with Toby. Sending good wishes from Arizona, USA.
Bless you, Julie. I know how exhausting forms and bureaucracy can be, and how difficult it can be to convey in words that people will understand the challenges you and Toby face each day. My thoughts and prayers are with you.
Your photos as usual are a joy. So good that you find solace in the natural world. Recently we saw our first Rainbow Clouds here on the borders of Lincolnshire and Cambridgeshire. Such a beautiful sight! The colours were amazing. I couldn’t believe my eyes. I tried to take a photo but my camera isn’t as good as yours so the results were disappointing.
Glad Toby is settling back into routine and hopefully your hard work will pay off and by the time he finishes college you will have the appropriate help and care so can continue your designing and knitting. Remember there is no victory without a battle! Take care!
Thank you for sharing your thoughts with us all. Sometimes life seems daunting and insurmountable. You’re in my thoughts as you muddle through the red tape and paperwork. I am always so uplifted in your space and I so admire your ability to see the best, no matter the trials you and your family are going through.
Dear Julie,
I’m so sorry that you have such an overwhelming task in front of you. Paperwork is just hideous and to document the details of your son’s day must be challenging on so many fronts. And yet, you still bring joy and uplift those around you, which makes you so heroic in my eyes.
I wish we could all take a little sliver of your burden to help carry it alongside you and make it just a little bit more manageable.
Prayers for ease in this massive task, prayers of patience and peace for those moments that it’s all too much to think about, and prayers that you will find an utterly perfect combination for Toby and your family as he launches into the years beyond formal education.
Take care! xo
It’s just so wrong that burocracy makes things so difficult on people who are desperate to get help! And especially on the people whose time is already made short by caring for the loved ones who are needing care. I hope you have most of that form writing behind you, and that the transition in Toby’s life will go smoothly. Wishing you daily moments of peace, moments where you can recharge in your beautiful surroundings, and am sending warm hugs your way!
Yes. So agree. You would think that as the years progress these facilities would simplify this processing of papers, papers,and more papers! This is what all these places need to do. Some of it is simply repeating over and over. They also could do check lists for a lot of the redundancy, plus cut out the constant duplicated papers. We also deal with this in the States. I often wonder where they store all that paperwork? I cannot imagine that at all.
Wishing you well in this New 2024 year, Julie. Love your knitted rabbits.
Beautiful photos. I saw a fox in the middle of our road at 11pm just before Xmas. It barked several times and looked up the road but as it got no response it vanished into the park. I thought it might be a vixen calling for a a mate but a bit early so maybe not.
Pleased to hear Toby settled into his college routine after the break.
The people who devise the paper mountain you are expected to fill in have no idea how draining it is. All you want is the best for Toby. If Toby is happy then the rest of the family will be happy. I hope you manage to get all the help Toby needs and you can find enough activities to keep him occupied and happy.
Sending a hug x
I love your sharing of personal life events and your photos are so beautiful and your words so inspirational. I hope the love of your knitting community helps to lighten those bleak and over burdened days that I am sure come around more often than one would hope. God Bless
Your photos always make my world a little brighter, a coffee table book, I read on the comments is a wonderful idea…
Forms, often wonder if the ones who writes them has ever filled any out…not always so sure …so tiresome, & how to fill out so you get best results…
Thank you for sending your notes, they always makes me so happy, & your pics are always top notch…
You & Toby are in my thoughts & prayers….hope things go as well as you want them…
Take care xo
My heart goes out to you. I will add you to my prayer wheel. I have a good amount of experience with being the caregiver of a family member and it can be very lonely as well as tiring.
Thank you so much for your wonderful patterns. They help bring my focus back to the positive. As the light returns, it’s comforting to know that the natural cycles continue in their way and watching the seasons change brings much pleasure.
Sending a huge hug your way – your photographs never fail to bring a smile to my face. Hoping you get through the mounds of paperwork and get things sorted out – we never stop fighting for our children to live the best life possible. Please make sure you take enough time to fill your own cup (which i know is easier said than done) xxx
Bless you for sharing your wonderful photos , you have such a gift with your camera.
Thoughts and prayers for you, Toby and your family as you navigate this new path for him.
Sending a hug from Brisbane x
I feel your pain and frustration. I have a 40 year-old autistic daughter, and the paperwork necessary to obtain services for her is completely overwhelming. We live in Salt Lake City, Utah, and often I grow weary of navigating the bureaucracy. I wish you the very best, and don’t forget to take care of yourself, so you have the energy for your daunting task.
Your photos are just lovely; they bring me peace and an appreciation of what beauty there is just outside my own windows.
Thinking of you. Sending a hug. Xxxl
I am so sorry about all the bureaucracy and challenges you face as you navigate a new path for Toby. I hope you are able to
have sufficient time to be able to knit, write patterns, take beautiful photos and enjoy your woodland walks. You are so talented
and your blog posts and knitted animals always make my day!
Warm regards from New Jersey, USA
Dearest Julie… reading your words made my heart ache a shared ache. My Jack is 25 years old. This exhaustingly heartbreaking process, as our loved ones age, sounds like it knows no borders. I remember crying uncontrollably after my two & a half hour “assessment interview” struggling with the realities of the daily struggles we have and sharing this with a judgemental stranger, and my heightened awareness of my deep feeling of love I have for Jack. A paradox for sure… life is hard and at times painful but there is love present. I wish I could send a warm hug & a reminder that served me… i was told to remember that I am the mother of three boys that all equally need my love, support & attention even though Jack may be able to consume all my waking moments. You too need to keep it in mind as you figure out how to spend your one life & the help you will need to get you there. It takes a village even in the best situations let alone the challenges you face. Self love is needed too.
Fondly, compassionately yours, Lori from Vallentyne
Thank you again for your beautiful patterns, gorgeous photographs, and touching blog. You are in our prayers for a seamless transition for Toby’s care. Sending Love from Walnut Creek, California USA
Everyone has said exactly what I would Julie. I hope it helps in some small way to know that thoughts and prayers are being sent from far away. Your blog posts and patterns inspire so many. Take care and I do sincerely hope things fall in to place this year for Toby.
Thinking of you and your family wish you a new Year with those small joys and things that help us to cope with difficulties through the days.
Your posts in this blog, photos, and how you try to cope are one of my small joys.
Hugs from Lisbon.
Teresa
Dear Julie, this is an indescribable help, already many testimonies tell of unexpected solutions and your family but especially dear Toby deserve it: New Year , new life !
Search the English site of : Bruno Groening’s Circle of Friends .
All love and health !
Stefania Italy
So sorry to hear what you are all going through for Toby. I really hope there is someone reading your blog within the system who will reach out to help you, it is a national disgrace how families like you are left to fend for yourselves. Bureaucracy is a nightmare and easy to slip up unless you are in the know…..
Will keep you all in my prayers x
Thanks, Julie. Sending you peace and strength from across the pond. -Stacy in NC
Dear Julie. Your pictures lift my heart, and the ones of your new friend Bob D. Robin are so clear I feel he could be sitting at my garden table.
I can’t imagine how difficult and draining it would be to concentrate on Toby’s difficulties, and document them. I know that you will find the strength to manage the paperwork in order to achieve the best outcome for your son, but I hope that the support you have from around the world somehow helps. You are in my prayers.
Such beautiful pictures and heartfelt words. I’m sending you the biggest hug lovely lady xxx
Sending hugs and prayers your way. I know how daunting the process of caregiving can be. I have a special needs brother. Since our parents passed, my other siblings and I have managed his care. Just remember to take some time for yourself. It is for Toby’s well-being that you do.
On another note, thank you for the beautiful pictures and lovely patterns. They bring joy to my heart.
It’s so wonderful to see your beautiful photos and hear that your start to the New Year has been a good one. So many prayers for your family as you make huge decisions for Toby in the next few months. Wishing you all the best in these chilly winter months!
Hi Julie from my corner of the world in the US.
Beautiful photos.
I have you and your family in my prayers.
Thank you as always for the beautiful photos in which you capture the beauty of your bit of the world, and for your moving and heart wrenching honesty – your love and hopes for Toby always shine through. All of us are holding you in our hearts – from Johannesburg oxo
It’s magnificent and very touching to see how you manage to create so much beauty with your complicated daily life. It is also certainly what makes you appreciate all the beauties of life so acutely. Thank you very much for your generous sharing, and thank you for all your always so pretty creations, whether they are photographs, pretty inspired texts, or knitting. You spread beauty and joy around you, be thanked again and again.