Sometimes you need to make a conscious effort to slow down and indulge yourself in a little quiet time and that's what I'm doing today. Today will be a pyjama day – the phone will be left to ring, all but the most pressing of emails will go unanswered, there will be plenty of chocolate, a bit of book reading and a little undemanding crochet. It has already got off to a good start with tea and hot buttered cheese scones
The reason I feel in need of a bit of quiet time is because lately things have been complicated on the Toby front. Not especially so with him personally but with the things related to him. He is entering a gradual transition phase where he is being passed from child services to adult ones and this means many more meetings with professionals, on-going assessments, checks and an increase in the mountain of paperwork that goes along with having a child with special needs.
This year we seem to have had more forms than ever to fill in and each time a new one arrives I have a little wobble as I know the weight of the task is far more than a few sheets of paper. One form that I filled in this year was 48 pages long. It took me over 2 weeks of thinking and planning what to write. There were tears as I recounted particularly traumatic incidents that illustrate the depths of Toby's disability and a great deal of anxiety at whether the words I'd committed to paper really conveyed the extreme challenges he faces on a daily basis. It is an all-consuming task until completed – it even intrudes on your sleep, because you know it's important to your child's future and you also know that the person who will process the form has a very different agenda to your own.
I've also learnt that words can be taken out of context and used to prove the opposite of what was meant by them. We are in that position at the moment and will have to appeal against a decision made about Toby by going to a tribunal – something which I am dreading but which is necessary to protect his rights as he grows into adulthood.
Please don't think for a minute that I am so ignorant or insular that I don't know there are millions of people all around the world in far worse situations than this. I do know that and it does make me incredibly grateful for all that we have. But we are each bound within the confines of our own existence, viewing the world from our own perspectives and at the moment a little indulgent quiet time is helping me to cope with our small difficulties.
I'm grateful to be able to find peace and contentment through playing with wool, it always helps calm me and un-fuddle my head. What do you turn to in times of stress? If you feel like sharing, I'd love to hear what helps you through your difficult days.
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PS: Thanks so much for the feedback about instagram. As suspected lots of people don't do instagram and most of those that do don't mind seeing pictures twice, so from time to time I will post photo round-ups here on the blog. I definitely won't be stopping blogging though 🙂
little cotton rabbits 
I think anyone who has dealt with any sort of Government paperwork will sympathise with the trauma you are going through. I have to reapply for PIP every three years and ESA every two years and it doesn’t get any easier. You live in a low level of fear for months at a time, especially when you have explain exactly how awful your health is and how it effects your life and those around you. I imagine when you are filling in the paperwork for your own child it is a hundred times worse.
When life gets too horrid I find a good audio book, and let a soothing voice transport me to another world as my hands knit on something mindless. The other escapism I have is watching trashy tv series episodes back to back on download. It’s great escapism.
I hope that your spoiling of yourself helps you decompress a little and help you face what comes next. You need to take care of yourself in order to take care of anyone else.
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Dear Julie – you deserve every minute of your time out. It’s obvious that you do everything you possibly can to give your boy the best life can offer. Bureaucracy is soul-destroying, and you need time to regroup. No-one could (should) deny you that – you are a hero, like many others, but no less deserving for that. Enjoy your day x
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Sometimes we need to slow down or just have a lazy day to feel that the hard days aren’t pulling us down… As you I do understand that there is a lot of worse problems that other people live in the world, but what about us? We are someone, we live each day and face our challeges as well… and some of them affects so much the way we live day by day and get related to other people. Sometimes I do want to be understanded when I claim for some silence, for some peace of mind, for better sleep as well, people judge me that I shouldn’t complain cause there are people in worse conditions, they just don’t understand that for me to be happy and the close relatives/friends as well I do need to fell understood for that… Knitting for me has been a great way to focus my thoughts but at this moment I don’t spend the time that I would enjoy to spend… Have a lovely friday and weekend
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Knitting is a solace. When I feel anxious and overwhelmed I try to remember this: if you focus on the past you will be depressed; if you think too much about the future you will be anxious. Just try to be see the beauty of small things right now. Very simplistic, but I find it helps quiet my mind. Sending you lots of love xxx
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Oh Julie… Your writing spoke to my heart, my soul and my experience. On this side of the pond we are going through this “transition” & find myself feeling like a revictimized victim. I wish there was a mandatory video that everyone in positions of decision making for our children must watch to remind them that our journey has not been a choice it is our reality. We are not the enemy trying to pull the wool over their eyes. They exist in their role to be a helper on this journey bug it doesn’t feel that way. We would love our children to breeze through school self propelled & fly into the world but that’s just not how this goes. I have filled out umpteen forms proving my sons disability, got tests done to confirm what I say, psychological assessments that again prove what I say and still it doesn’t seem to enough.
BUT you are doing your best! You deserve more than just one down day! I know how hard it isto change gears from “getting it all done ” to “what do I need to get through this” . Bravo that you can identify that you need a break without falling ill.
For me…when things get too much…I plan my day with a list of what I need to get done & make sure I plan periods of knitting & hot lemon water sipping. I also try to write down what is going well, what I am grateful for because sometimes I just lose sight & get bogged down with what is going wrong…and how I am responsible for it all.
Enjoy moments, you are enough, you are doing the best you can….stay in your pyjamas 😌
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Good for you. Have a restful day! Sally x
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Hugs. You are an amazing mother to a very lucky boy and his wonderful sister.
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I do sympathise, Julie. We’re currently dealing with a lot paperwork that pales into insignificance against the importance of the situation you’require tackling, but it’s still kept me awake and given me headaches as every comment has been misinterpreted. Do hope your peaceful day is really helping.
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Your writing, like your knitting, is captivating and so full of love. You deserve the sweetest of pajama days. Christie
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Toby is so lucky to have you for a mom. Blessings to you and your family.
Kelli
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You are so generous to share your real life with us. I pray that you will feel a virtual hug that will help sustain you as does the wooly comfort.
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Yes it is hard having to be the advocate for your child. In the past my way of coping has been to keep busy, But I am learning that is not always the best way. I’ve ordered my yarn for my crochet blanket and hope to learn how to make a blanket. I sure hope yarn is it for me.
Enjoy your day off reality as much as you can. ((HUGS)
Leanne NZ
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We are a little further down the road than you are with Toby. We made it through the transition from school to adult services for our special needs daughter. Now twenty years on we are facing the mountain of paperwork and endless tests and meetings to find suitable services that will maintain her spirit and give her as much independence as possible as she ages prematurely. One thing I thing we learn as parents is that we are their champion and we have to take care of ourselves in order to do our best for them. So rest up, pamper yourself a little bit and know that you are not alone. Blessings and hugs coming your way.
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Sorry to hear that you’re having a few problems at the moment re Toby’s future, forms are such a nightmare and I can understand how difficult it must be trying to make someone understand the situation through words.
You totally deserve a pamper day and it all looks so cosy, I hope you have been enjoying it AND I hope it involved large amounts of chocolate……always good!! 😉
V x
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You definitely deserve a break, I can imagine how very difficult it is dealing with all of the paperwork when the outcome is so very important. You have my very best wishes. CJ xx
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oh, such a difficult time, I can’t even imagine what you are going through! I turned to knitting seriously when I was going through a difficult time and it really helped me, I preferred complex projects at that stage because then it was a good mental distraction, otherwise I’d obsess over what was bugging me. Anything that gives you comfort right now is what you need. Hugs! We are all sending positive thoughts!
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Hugs to you, Julie. I completely understand what you’re feeling right now. Our situation is different in that it concerns a serious medical condition that one of our children lives with, but it also involves endless effort on my part to keep everything under control, from the daily medications, to the negotiations with doctors and pharmacies. I needed a new prescription written for one of his medicines recently, and with all the different levels of bureaucracy, involving the doctor, insurance company, drug company and pharmacy, it took 15 days of daily haggling to get the job done. It’s exhausting. I always tell myself it could be much, much worse, as you do, but I know that’s cold comfort when you’re doing everything in your power to help your child and you end up feeling like you’re up against a wall. I hope things work out smoothly with Toby’s transition. You certainly deserve the quiet day you’ve planned for yourself. I hope you have enjoyed yourself thoroughly.
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Hi Julie, As a mother of twins with autism and down syndrome your words spoke volumes to me, and were conveyed just as we experience. The paperwork is awful I know, and the words it’s true even here in the U.S. are taken out of context. It often feels as though the Government, the System has there own agenda so far from your own. My boys are 18 now as so much was taken away and so much paperwork and court rulings as to where they should be now. Both have a mental age of only 3, they walk, eat okay by themselves, yet do not speak. Pictures is how they communicate and with autism it makes it a bit harder. I thank you for expressing exactly what I feel and have felt at times. It’s exhausting on the down side and the quiet times are needed. I too try to remember some have it so much harder, yet, when you’re in the middle of your own situation it often seems just as big. I really don’t like when people remind me some have it worse, often I think, thank you, it doesn’t feel like it right now to me. I too find peace in yarn work it does free the mind unravel just as the yarn and I find peace in the child like behavior of my son’s, seeing life through their eyes is often a blessing most do not experience. It’s a constant in a person life when a child has severe special needs things change at any moment. I understand, I wish you peace, comfort, and a much better New Year to come. Day to day is all we can do. God Bless your family.
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Heavy sigh….I’m sorry Julie, and all the other moms out there who really never get a break. I wish I could take your burdens for a little while. There are certainly some very fortunate children (and teens, and adult children) out there to have wonderful moms like you. Joy, peace and blessings to each of you.
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Hi Julie! Enjoy your downtime as what you are going through with all the paperwork is very stressful. I, too, find what I call momentary “escape” through my knitting or crochet. They are so soothing and calming. I think it is a combination of the rhythm of the craft plus seeing textures and colour interplay. I love your blog plus also love seeing your photos on Instagram. Hugs, Kaylene
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I am always astonished by your courage as you face challenges that would crush others.
I use audio books when I need to relax. Audible offer a free trial and if you want a recommendation I suggest Miss Read ‘Village School’ read by Phyllida Nash which is perfect for absorbing listening as you create your knitterly magic.
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I really hope that all goes well with Toby’s support for the future, it is frustrating that you have to spend so much time doing paperwork. I am very glad that you will still blog as I don’t do Instagram. I craft to relax and unwind, as long as I get a little bit of time every day for that then life is balanced 🙂
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Hello Julie. Your words have brought back so many memories of the difficult times my family faced when we were trying to get a statement of special educational needs for my son. Endless forms, meetings, tears and sleepless nights. I feel for you and hope and pray that everything works out in Toby’s favour. I wonder if the professionals have any idea of the impact their decisions have on a family. I am glad you have your knitting and crocheting to help keep you calm and clear your head, not to mention a pyjama day; I’m all for pyjama days when in need! Knitting and sewing helps to calm me when I’m feeling stressed and upset. It has helped me come to terms with my best friend’s sudden death this year. What makes me smile every day though are the little faces of the little cotton rabbit mice, elephants and bunnies that look back at me first thing in the morning and last thing at night. I have also joined Instagram and really don’t mind seeing your photos twice. Your blogs are wonderful so please keep blogging. Very best wishes to you and your family Julie. You are in my thoughts. X
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When I need a break from stress I too stay in my pajamas and watch old movies, I don’t cater to anyone but me. I don’t cook lunch or dinner for the family. I relax and don’t feel guilty at all. I hope you had a lovely day day and feel refreshed. I have to tell you, your photos often take me from a bad mood to a happy one. They always make me want to start knitting!
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I will keep you in my prayers that all goes well. Sometimes you just have to step away and re-group. I find casting on a new pair of socks somehow calms me. Tough days call for some jammies, comfort food and comfort crafting.
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How many mothers in this world are awake in the middle of the night, trying to figure out how to keep going forward and protect their child? Sometimes I remind myself of all the rest of you awake, too, and send you virtual hugs and a cuppa. Creative work is always a solace, although my hands are not too happy to be crocheting and knitting these days (maybe it’s too much time trying to pry the tops off meds, or too many clenched fists to keep myself from throttling a pharmacist, doctor, tax person, etc.). Small beauties help a lot, too, from the light in the evening sky to a raindrop on a leaf. I also love the Kurt Vonnegut quote, which I paraphrase, that sometimes all you can do is laugh or cry, and laughing is less messy. Sharing a little dark humor with my adult daughter, knowing that anyone else would be shocked at our jokes, is pretty helpful, too. Take care of yourselves, and know I’m thinking of you all at about 3 in the morning, Pacific Standard Time. Kate in Oregon P.S. Anyone who dares to tell you that others are worse off than you has a special place in Dante’s hell, frozen down there in the ice.
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Forty-eight pages, wow. Your comments brought back memories of dealing with bureaucrats about my own son’s issues, albeit of a different nature, especially the frustration of things being taken out of context, or misinterpreted.
As for feeling guilty, I don’t think it’s helpful to think in terms of comparing yourselves to all the people in the world and their problems. You need to confine yourself to what is doable within the range of possibilities for your son in your particular area. Push for as much as you can get, and let other people worry about their own situations.
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I really do sympathise with you – I well remember that sinking feeling in the pit of your stomach when faced with forms, social workers, meetings, etc. and the realisation of how important every single word is and how getting it wrong could affect so much. There is also the trial of writing it all down and seeing the enormity of it all when it is on paper as opposed to when you just deal with the situation on an every day basis. I hated every second of it and always feared for the worst. However, at the time we were given a truly superb social worker who worked out a really good transition programme – a few things went awry, a couple of placements were proved to be wrong after my daughter had been there a while, but we managed to get it all sorted in the end. I’m a dreadful one for hiding my head in the sand when confronted with this kind of thing, but found it best to bite the bullet & face it head on rather than agonise over what might go wrong – and boy did I agonise! Good luck, I am sure it will get sorted, especially as you are very much on the ball. Painting was my escape – a way to shut the world out for a couple of hours at least. Keep on being kind to yourself, you need the strength to keep battling on!
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How appalling that it has had to go to a tribunal!! I hope it gets sorted quickly with minimum fuss, I can only begin to imagine how stressful having to deal with all that ridiculous red tape must be. Wishing you strength and positivity to help you keep going x
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sounds like you really needed your pj day xxx take care xxx
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HOPE IT GOES WELL FOR TOBY TAKE CARE JULIE YOU ARE A VERY GOOD MUM.
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I am filled with admiration for the way you deal with your challenges while sharing your considerable artistic talents with the rest of us!
Your intelligence and pleasant personality come through so strongly that I just wish I lived in your neighborhood and could come round and offer to help.
I hope the paperwork lets up soon and brings the services you need.
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As a mother of a child with special needs, one of the most profound pieces of advice a friend gave me was that God gave us what we could handle. Toby has the best possible chance thanks to you and whatever you do on his behalf is the greatest gift. Stay strong and do what you know in your heart is the best for him and in the long run, things will work out.
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I am very fortunate never to have had to fill in any of these forms or deal with the people whose job it seems to be to make an already out-of-the-ordinary life much more difficult. But I do know that as a Mum you have these reserves of strength and energy that you never knew you had to deal with these situations, and I’m sending you some of mine in a virtual hug to keep for those days when you might be running a bit low xx
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Thinking of you as I knit up the nextlittle rabbit dress. This obsession with sending us forms to fill is unfair. Especially as so often the questions they ask are answered in the previousfrm you filled in, if only they’d actually read them. Compulsory secretarial work should not be part of our caring duty.
I go through it every year because my mother, whom I care for, is now in her late 90s and her needs are growing. I’ve actually been asked by a young, not so bright social worker, if Mum is STILL alive (her emphasis) as some people go on collecting carer’s allowance after their elderly folk have died. I guess when you are 20 something, the idea of living to almost 100 is a bit remote!
But the knitting and embroidery needles ( wish I could crochet!), chocolate and books do bring back a sense off calm normality, so ignor the phone, switch off the computer and have a little 1950s time – it works wonders
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Ooo-er seem to have lost the art of typing! I MUST remember to proof read before clicking to send my comments. Sorry about all the errors above.
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Hi Julie
My heart goes out to you as I know only too well, what you are going through. Things tick along fairly smoothly then wham, there is a spanner in the works and it all kicks off. Our biggest panic was when our paediatrician retired- panic stations!!!!!! As Wil is nearly 18 our Dr was happy to keep and monitor him as he has known him since he was 4 years old and sees him as quite a success. We are the adult part for his epilepsy , which appeared on his 15th birthday and was unsuccessfully controlled. Our dr was at a loss as how to help and because of his age he went into the big hospital – it was incredibly scary but definitely a good decision. He is now 14 months seizure free and currently applying for a driving licence. There is no magic pill that I can give you, it’s just a case of getting through it BUT just know you aren’t alone. Talking helps, even if only to sound off. You often find support in the most unlikely of places. Don’t lose heart.
Mandy
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Dear Julie,
I so look forward to your Little Cotton Rabbits blog notes. In addition, I too feel as if I’m friends with Toby and all the readers of your blog. When life becomes too much for me or when my worrying mind begins to whirl I turn to http://www.howtofindpeace.org/dolindo-ruotolo-how-to-find-peace.html this has never failed for me and my life has become peaceful. Forever in my prayers, Katie
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Julie,
It must be exhausting trying to commit your son’s life an challenges to paper in a way that is true to him and that ‘service providers’ might understand. The constant need of forms to concentrate on past happenings at the expense of future hopes can seem incredibly bleak. I do hope your tribunal goes well and I think some quiet crochet time with cheese scones seems a perfect antidote.
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I’m so glad that you are making a little quiet time for yourself, you will be so much better able to look after others if you look after yourself. It sounds horrendous, I dread filling forms, especially when you are asking for something, wanting to be honest but needing to get the point across is so hard, so many things just can’t be put into words, you have to live. I hope you will be given strength to get through the tribunal and all that will entail. I am with you in the yarny relaxation, it’s just such a great way to de-stress. Take care, hugs. Sharon
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Although I do not have your particular concerns, I do make copies of everything I am asked to fill in, and keep it on file. That way when I am asked to fill in more forms that ask the same question, or questions, I have it on file and can copy it and not have to go to all the time and anxiety to dredge it up from the depths of my brain. May all go well with this new beginning in Toby’s life.
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Sending love and best wishes Julie and hope your relaxation time gives you the peace and strength to help you through this difficult time. I love listening to classical music which gives me a sense of tranquility, I also agree that Miss Read books are a wonderful form of escapism in this crazy world. xx
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My stress relievers are found through reading and through knitting while listening to audio books.
My sympathies with the ever increasing paperwork and alternative interpretations of your words. Toby is lucky to have such a loving mama in his corner!
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I love your blog. As to the paperwork, yes, been there , done that,my son is now 24. Does it get easier ? No. We just have to keep going for them. I’m glad you have a talent and a hobby which will help to give you something to put your mind on neutral on the awful days. We love our kids like they were newborns, Toby is a lovely boy, keep fighting for his needs.
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AMEN * to your quiet-time. We all need this much more than we all know.
If I do take some time to come back to myself, I take some knit- or quiltwork at hand.
Wishing you all the strength you need.
Love from Holland
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Dear Julie
Read your post re forms etc. In Bromley we have the Burgess Autistic Trust who are experts at gov department form filling and know exactly what to write. I made an appointment with them ( free ) and they told me exactly what to write in each box ( used their precise wording ). Not sure if you have this charity near you but here the trust will support the autistic child and their families throughout their life including school and child to adult transitions. I am sure you are clued up with everything so apologise if I am repeating things you already know – just that the trust has been very supportive for me and is comforting to know they will be there for my daughter if she needs them in the future.
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I do understand and sympathise how you feel regarding the form filling and things you’ve said being taken out of context! Just tecently, after attending a meeting with an Atos agent, just because I could walk 50m aided, i lost my Disb benefit! They totally ignored the fact that every step is painful and it is getting worse!
I do wish you well with this as people sometimes don’t understand that it is a LIFE they ate dealing with!
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Never apologize for venting or taking a break. The amount of stress you are under is tremendous. Hang in there. When I need to disconnect from my reality a bit, I often take a nap. It really shuts everything off. Other than that, possibly a good light silly book. If I am lucky enough, maybe a good convo with a trusted friend. But they are increasingly finding it hard to relate or sympathize, so I just plod on in silence unfortunately. I hope you find a break. I also really like Headspace.com. Great meditating app as well. Helps sometimes.
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I would agree with Michelle and add to never feel guilty. Bureaucracy is a horrible beast to deal with especially if they twist your words. I’m sure you will succeed and Toby’s needs will be understood and allowed for. Obviously knitting helps me enormously but when really stressed I have taken to looking at a little video of my granddaughter running around, squealing as I am talking to her on the phone, pure happiness and it’s always uplifting when my spirits are low. Very best wishes and ” Nil Illegitimi Carborundum” (my dad used to say this often and said it meant ” don’t let the bast***s grind you down”; he wasn’t a Latin scholar tho’)
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You said it so perfectly Stitched Together, the low level fear is a very tangible thing, thanks so much for taking the time to comment. I hope you get through your next round of paperwork with a happy outcome and that the audio books continue to transport you to somewhere where red tape and form filling is an unknown x
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That is such a nice thing to write Marge, thanks so much x
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You’re right Susana, understanding and compassion go a long way in this world – I hope you are on the receiving end of lots of both x
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That is so true Esther – living in the moment is the best way to avoid worrying about everything and getting overloaded. Small and simple pleasures are some of the best ways of staying grounded as are good friends 🙂 xxx
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You are so kind Lori. I know you have so much to deal with yourself and yet you always are so kind and generous with your words of encouragement and support, thank you x
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Thanks Sally, it was a good day 🙂 x
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Thanks so much Colleen x
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I hope you get your paperwork all sorted soon Jane, forms often seem to be full of ambiguities and they do cause a great deal of stress about whether you’ve conveyed the everything adequately. Good luck with your situation and thanks x
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Thanks so much Christie, you’re very kind x
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I’m not sure he’d agree with you right now – I’ve just had to hide the custard cream biscuits because he’s eaten 9 since coming in from school! Thanks so much for your kindness x
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A virtual hug is always a very welcome thing – thanks so much for sending one my way LoriAngela x
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I really hope you find as much pleasure in your blanket making as I do Leanne. It’s a good combination of slowing down while at the same time achieving something and just enough low level concentration to take your mind off worries – least ways that’s what I’ve found so hopefully you will too x
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Thanks so much Ann. It’s always helpful to hear from others who are further along the same road. It’s good knowing that there is a road to follow which others have trodden and lived to tell the tale. Thanks for taking the time to comment and reaching out with compassion, all the best on your journey x
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You always write the nicest things Vivienne. I do wish we lived closer so I could say a proper ‘in person’ thank you. Maybe one day we’ll meet up and I can give you the hug I’d so like to give you right now x
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Thanks so much for your good wishes CJ, they are deeply appreciated xx
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You are so kind Julie. Thanks so much for sharing and for the positive thoughts xxx
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Awe I really look forward to that day Julie!!!
V xxxxxxxx
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I can’t imagine how hard it must be to not only deal with a serious medical condition in your child but to also have such ridiculous levels of bureaucracy. It’s strange how you adapt when you live with a challenging situation- you just get on with it but outsiders looking in wonder how on earth you cope and keep a smile on your face and a kind word on your lips. Reading about your day-to-day makes me think exactly that now. Thanks for reaching out to me with compassion when you have so much to contend with yourself. I hope that you have a more straightforward time of things in future, x
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Thanks so much for sharing your story Pamela, I can’t imagine how hard it must be to dealing with court rulings and authorities dictating where your sons should be. You must be a stronger person than I and like you say, day to day living is all a person can do. All the very best to you xx
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You’re very kind Amy and it’s kindness that helps anyone get through a bad time whatever it may be. Thanks so much for taking the time to write x
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You’ve hit the nail on the head Kaylene, that feeling of escape that you get from immersing yourself in the rhythm of a little knitting or crochet is a very welcome thing. Thanks so much for your kind comment x
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Thanks so much Alice. I think we all have reserves of strength which are there within us ready to be called on when the occasion arises and somehow it’s easier to access them when your child is involved.
I’ve yet to get hooked on audio books (though I read each night before sleeping) so perhaps it’s time for me to do so and I’ll definitely go and look at audible and try out your recommendation. Thanks so much xxx
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Yes, you’re right Alison, a little craft time each day is as essential as your ‘5 a day’. I’m glad you get the chance for a little every day and very grateful that I do too. Thanks so much for your good wishes x
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I’m so sorry to hear about the loss of your friend Helena. It’s so kind of you to share your story too, sometimes it feels like you are the only one going through a situation and although I’d not wish it on anyone it does help to know that others have dealt with it too and survived. I hope you continue to find peace and pleasure in your knitting and sewing and thanks so much for your kind words x
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I did have a lovely day thanks Joan. Like you say, staying in your PJs and allowing yourself to not feel guilty about taking a day off does you the power of good. Thanks so much for the compliment about my photos, I do love looking through my camera lens and trying to capture snippets of what makes me happy x
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Thanks so much Abby. Comfort crafting in your jammies is a good way to re-group and it’s nice to know that knitting is a source of calm for others too x
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Laughter is definitely good medicine, though it’s easy to get out of practice when there’s a lot to make you feel more like crying. I’m glad you get to laugh with your daughter sometimes – sharing a little dark humour is a great antidote. Will think of you in the wee small hours too Kate and wish you lots of small beauties x
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Thanks so much Cath. It makes you wonder whether it is done on purpose, perhaps there are special training courses or bonus schemes that make people doing these jobs lose sight of the fact that they have someones life laid out before them on their desk. If they had to confront the misery that they cause face to face they might start looking for another job but sadly they can remain isolated from the impact of their incomprehensible decisions.
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You are right about the enormity of it all when it is written down Caroline. It is a painful process as so many of the things you have to write you would much rather not have to remember or dwell on in depth. I have a difficult time with letting strangers into our home too, it is my sanctuary and having a constant succession of people arriving (we’ve only ever had the same social worker for 2 consecutive meetings and then she was replaced) is unsettling. Still, like you say often things pan out or if not then you adapt accordingly. I’m glad that you have found somewhere that works well for your daughter and that you have your painting to help you keep things at bay. Thanks for your kind words x
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Thanks for your good wishes Georgina x
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I did enjoy it Tess, thank you xxx
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Thanks so much Kay, you are kind x
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What a very kind thing to say Carol, thanks so much x
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Thanks Fuzzbunkle, I really appreciate your kind words x
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You’re right Christine – I think when your child is involved you have far more strength and energy than you would if you were just sticking up for yourself. Thanks so much for the energy giving virtual hug, that was such a lovely thing to write x
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Don’t worry about any errors Jenni, your kind message is loud and clear. How ridiculous that you should be asked about your mum like that. I think it’s a kind of arrogance that comes from doing a job day in and day out and forgetting that you are speaking to a human being. They would benefit from training that put them on the receiving end of some of the things that they say. I hope you don’t have anymore incidents like that and that you get to enjoy some regular 1950’s time too – I like that phrase a lot xx
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Thanks so much for your kind and encouraging words Mandy. It always really helps to know that you’re not alone, no matter what the situation. It’s lovely to read about your son and I hope he does well with getting his driving licence. All the best to you and thanks again for writing x
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That’s so kind of you Katie, thanks so much for the link x
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Thanks so much Curvywitch, I really appreciate your kind comment x
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Hi Sharon and thanks for your lovely comment and good wishes. Here’s to lots of stress free knitting time, I hope you have plenty on your schedule too x
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That’s definitely a good plan Tana and we keep photocopies of everything we’ve ever submitted too. Unfortunately they seem to enjoy changing the forms each time so sections are moved about or completely changed and although you can take some of what you’ve written before you’re often having to submit things in a different format. Anyway, it’s done now so all we can do is wait for the next step and tackle that as and when it comes. Thanks so much for your good wishes x
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Thanks so much Carol. I’m not yet familiar with the Miss Read books but will be making her acquaintance soon based on the recommendations here and like you I love music – I often listen to classic FMs smooth classics when I need to calm my mind before sleep, like you say it can be wonderfully tranquil x
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Thanks Jen, you are very kind x
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You’re right Jane, we do love them like they were newly born. All of those fierce, protective instincts are still firing on all cylinders because even though they’ve grown big and strong in body they are still so very vulnerable. We’ll keep on battling as I’m sure you will too. All the best x
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Thanks so much for your good wishes Monique, hope you are getting plenty of quiet time too x
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They sound like a wonderful organisation Michaela, just what is needed to really support families. I will see if there is anything similar in our area, we do have an organisation funded by the local authority that we’ve used in the past but this time when I contacted them they had too many cases on their books and so I filled out the form on my own. I’ll be looking for guidance and support next time 🙂
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I’m so sorry to hear that Gillian. Like you say it has enormous impact on peoples lives when things are misinterpreted or taken out of context. I hope that things improve for you x
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Thanks so much Michelle, both for the headspace suggestion (I’ll look into this as meditating helps me too) and for your kind and supportive words. I hope you find what you need when things get too much, take care of yourself x
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Your Dad had some wise words 🙂 thanks for sharing them Hazeyj. It’s lovely reading about your Granddaughter too, she sounds like a little ray of sunshine – special people in our lives are always such a blessing. Thanks for taking the time to comment x
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Like you, my knitting is the biggest stress reliever and my everyday job as well most of the time. Life gets so complicated sometimes – even without a special needs child. So I can only imagine what it’s like for you. Hang in there and keep on creating all the beautiful things. That mouse with the little holiday dress is precious. Holiday hugs to you and yours.
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You’ve faced some very tough times with so much grace. My sympathies about the forms. I hope the rest of the process goes smoothly. Knitting and playing my cello , alone or with a small ensemble, help me navigate stressful times. My spouse is very supportive , and we make it through together. All best wishes to you and your family!
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Just sending hugs, smiles and peaceful thoughts from my side of the pond to yours. You are an inspiration of love, calm and talent that I can only imagine gleaning a fraction of. Stay strong as you can continue to fight the good fight. Blessings to you and your family.
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Saying prayers for you, your sweet boy, and your family – that you weather this storm and the sun shines soon.
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I’m a wee bit late with this comment, but I hope your quiet time refreshed you. Having dealt with social services and the court system when we adopted our kids, I know how frustrating bureaucracy can be. It’s hard, and you need to take time to take a deep breath before stepping back into the fray. Just remember that this is only hard because you care so deeply that your son has the best possible care and opportunities. That may help lighten the load just a smidge.
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You are an amazing mother. Enjoy your moments of quiet and relaxing. Keeping you and your family in my prayers.
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I can’t even imagine Julie. I have a fit if I even have to fill in a sheet or two for something or other — it all takes soooo much time — and wouldn’t we rather be doing something more pleasant? Your room looks so peaceful and beautiful — what a wonderful place to have a pajama day!
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God yes, the horror of having various people traipse into your home! Sometimes in groups. I just used to feel under such scrutiny and had a horror of my daughter being taken away because I’d said something that could be misconstrued or the house was a mess that day. She has 3 things going on now, an art studio twice a week, a social club once a week & a careworker who takes her out for a morning to do what she wants without me. It’s been stable for a few years now – we did go through a few other placements along the way, some terrific, others not so good. Keep up the good work, this will pass and hopefully you’ll have a quiet plateau for a while.
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Oh dear Julie I’ve only just read this post because I don’t tend to blog so much these days and rely on instagram for instant fixes of loveliness from my favourite people. All these new steps to take with Toby and the system that is meant to support him sound exhausting. I am always awed and inspired with how gracefully and lovingly you manage to cope with them. Take comfort in your knitting and crochet – I know I am. In fact the other day when I was trying to sleep I kept imagining the feel of the wool between my fingers – I may even knit myself a mini swatch to pin to my PJs! And I often repeat knitting patterns to myself these days instead of counting sheep!!
Much love as always, Lucy xxxx
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I can’t offer anything in the way of knowing what you’re going through other than utmost respect. I’ve followed your blog for many years and you’re a strong woman. I hope you found some respite in your quiet day with yarn. That’s where I find mine too. I hope once this transition is over things calm a little for you x
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Your bed, the blanket, are beautiful.
To relax I walk, or swim. I also find that a good red lipstick or nail varnish helps me to feel visible and brave, when all I want to do is be invisible.
Wishing you good news with all you need to do to care for your son
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Well! I’m late to the ball game! I hope your day of rest proved to be just that. A day of rest and that things have smoothed out a bit. It seems like anything to do with/for our special children is a fight and oh so exhausting! Some battles I can fight, others, I’m too tired and overwhelmed.
You are such a good mommy. God couldn’t have sent Toby to a better mum. You are such a great example to those all around you and you are reaching out to so many through your blogging.
I pray Toby gets all of the services that he needs. So scary, these children growing up!
For me, the stressful times, I think that reading, knitting, going for a run, turning to God in prayer. Those are some of the ways I deal with stress. EATING!! 🙂
Hugs, loves, and prayers to you Julie!!
XXXXXX
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I pop in and out every now and again. I think you have worded this beautifully: ‘Please don’t think for a minute that I am so ignorant or insular that I don’t know there are millions of people all around the world in far worse situations than this. I do know that and it does make me incredibly grateful for all that we have. But we are each bound within the confines of our own existence, viewing the world from our own perspectives and at the moment a little indulgent quiet time is helping me to cope with our small difficulties.’
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