It's very wet and windy outside today, but I don't much mind because here in my little corner of the world all is quiet and cosy and peaceful.
Christmas this year was really tough going for Toby, and therefore for us too. Each year I think that it can't get worse and each year I am surprised to find that it can – you'd think I'd learn, but then I suppose I am an optimist. The change in routine means that Toby finds all school holidays incredibly stressful and coupled with the Christmas tree and decorations making the house look different we had a lot more hand-biting, meltdowns, screaming flinging fits and awful nights. He couldn't cope with some of the decorations so we had to take them down and as usual we didn't get to eat Christmas lunch all together – I spent most of it in the garden blowing bubbles for Toby while Amy & H ate.
'Special days' really accentuate the difference between how our family lives and how family life is for most and I know it's particularly hard for Amy despite the considerable effort H & I make to be upbeat and jolly. I do try to focus on all that I have to be grateful for, but deep down I wish with all my heart that Toby could experience a little of the magic of Christmas and as a consequence I felt tearful for much of Christmas day.
Anyway, I'm not going to dwell on all that could be better because, like many who deal with difficult circumstances, I'm aware of the deep well of despair and bitterness that it would be all to easy to fall into. I have seen it claim some that I know and that is not how I want to live my life. Instead I'm going to take up my knitting, enjoy my cup of tea and revel in the peace, quiet and calm that has returned here now that Toby is back at school. Thank goodness for familiar, comforting routines and the simple, quiet pleasures of knitting.
Time to recharge my batteries.
little cotton rabbits 
I so admire your strength, love and determination – you are quite right to concentrate on not being bitter and ‘down’, almost impossible that may be at times. It destroys you and doesn’t change the situation. You are in the thoughts of so many people. I hope that somehow, someway, 2012 will bring some help and comfort for you. AnnaC
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Dear Julie, you have no idea how admiration I have of you as a person and especially as a mother.
I’m sorry Christmas couldn’t be what you wanted it to be for you and your family.
The courage and dignity with which you face what life has dealt you is amazing. You are so right though to put what is past behind you and focus on ‘the now’, enjoy your quiet time, your knitting and of course the all important cup of tea. Most importantly don’t ever loose your optimism.
I’m wishing you and your family a much happier and a very peaceful 2012.
V xxx
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You are so strong, your take on life is inspiring. Enjoy your knitting and that cup of tea, you deserve it x
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Happy New Year to you and your family, Julie. I hope you get to enjoy many quiet cups of tea this year. I am sorry to hear about your difficult Christmas. I have two boys, one of whom has always slept well at night. The other one is usually out of bed several times a night, wanting to chat and play and shouting for his breakfast at all hours, so I rarely get a good night’s rest. I too enjoy my ‘me’ time when they are both out of the house and I can pick up my knitting needles! Hoping for a more relaxing 2012 for you! Best wishes, Lizzy
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There is much to be said for truly enjoying our moments of tranquility – especially when life provides us with much of the opposite. I am so pleased to see you making the most of yours Julie. You are an inspiration.
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I’m so sorry that holidays are never easy for you Julie. You’re quite right to huddle by the fire with your knitting – we all need time to recharge our batteries, you more than most. Here’s hoping that 2012 will be kind to you and Toby, Amy and H.
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Admiration is the right word indeed, for me, for your courage. One does what one has to do for their children, but I so admire than even in the midst of how hard it is, you find it in you to make beautiful things — and share them with the rest of us, from the bunnies to the beautiful pictures and everything in between. I hope this new year brings positive changes and peace to you and all yours, specially Toby!
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What a blessing that you can see what is going on, and know what you need to do to deal with it. Not the ideal, of course, but life would be so much harder if you didn’t have that gift.
Thank you for sharing your grace, and caring gift.
Pretty yarn. What are you making?
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I’m sobbing for you Julie. I know you didn’t ask for our tears……. but I am shedding some for you and Toby and Amy and H.
As V said, you are an inspiration to us all.
My heart just breaks. Oh how my heart breaks… it’s more than just the lost holidays that are ‘normal’ for others… it’s so much more…….
The image of you in the garden blowing bubbles for your baby with tears streaming down your face….. a mommy and her baby. Trying to be brave for the others not just on that day but day after day after day…
Yes, my dear friend. Sit and let your mind be at peace for a little bit as the amount of exhaustion that you go through is compared to nothing else. Oh that I could help in some way……
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Hello Julie, You are such an inspirational mum…I love your knitting (even though I am hopeless at it) and your blog. Hope this new year brings you many wonderful moments, Pati x
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Thank you for sharing your life with all of us … Take that well earned rest :O)
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Keep on ‘keeping on’your dignity and optimism and inspiring.xxf
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Hello Julie
I am sorry to learn of your difficult Christmas. It is so sad that Toby cannot share in this special time.
I have read your blog from the beginning and I admire the way you look after Toby as well as try to keep things normal for your daughter. You truly do have strength.
I hope that you can enjoy many moments of peacefulness with your knitting and your cup of tea.
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a hug with all my heart. linda
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Wishing you health, wealth and happiness in 2012. I love reading your blog and find your enthusiasm, compassion and honest inspiring.
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recharge away Julie- I send my very best to you and your family for the upcoming year.
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poor Toby-how difficult and stressful his life must be when his normal routine is so disrupted. I know our parents feel guilty for being relieved when school holidays are over, but it gives them a well deserved respite, and their children a return to their normal routine. You cope so well, keeping cheerful in spite of your sadness. I can’t say I hope it gets better, because I know it won’t. I just hope that you, Amy and H remain strong. xx
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I think even people who don’t have the sort of difficulties you have in your family still find “special days” difficult. When everyone thinks everything to be perfect, it so very rarely is. Whether it is down to the fire brigade being called because the oven is on fire (and yes this did happen one Christmas to my family when I was a child) to not getting the gift we really wanted to having a stand up row about how “you expect me to do everything while you get drunk and fall asleep in front of the telly”. Special days are hard for everyone in there own way because of the expectations that we bring. When I stopped having expectations about Christmas, I started enjoying it a lot more. I know that my issues are not your issues, but I do think that expectations have a lot to answer for!
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It has all been said.
I just send hugs.
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Julie – you are a wonderful mother and continue to do so much to make Toby and Amy’s life something special. I am sure that Amy will grow up with an extra portion of patience, compassion and kindness, having seen you demonstrate that her whole life. You deal with so much more in a day than most people. I hope your knitting and tea bring you restoration today, and I hope that Toby’s regular routine brings him peace and comfort today as well. Sending you hugs across the ocean.
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Happy New Year Julie,
Sometimes Christmas can be the cruelest of times as it seems to magnify everything.
Please take some time this January to recharge but also to remind yourself that Toby is very fortunate to have such a loving and caring mum as you …. all the best for 2012. xx Fleur
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I think you are amazing inspiration to us all. You certainly deserve your quiet moments. Big hug. Xxxx
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Good for you. Thank you for your honesty.
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Scrap the tea and have a BIG glass of wine, enjoy the relaxation and serenity!! Give yourself some peace of mind, and think about all of the people that love you, & appreciate you, including us.
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Love that picture of you toasting your toes! Being able to find serenity when life is all but serene is a lifesaver. And sitting with a cuppa and your knitting is the best cure-all I know x
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I do feel for you all Julie but constantly admire your cheerful approach. Sending lots of love and hugs and best wishes for 2012. Hope to see you soon. G x
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What a special person you are.We all want everything to be perfect for our children and it very rarely is.I always felt it for our daughter at easter.She was diagnosed at 4 with Type 1 diabetes and from then on was on daily insulin injections.All her friends would be boasting about how many Easter eggs they had and Sarah couldn’t have any .But she coped!!She is coming up for 40 now and it such a way of life for her that she never mentions it but I wish things were different.She two beautiful little girls aged 4 and 6 but i still worry so much about her.I know this nothing like your situation but i do have a little inking of what it must be like.take care and keep knitting those gorgeous creatures of yours.
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Enjoy your rest xxxxxx
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The holidays are difficult at the best of times …I think we all threw a wobbly at one point or another so I can’t imagine how tough it must be with Toby.
May January bring you some respite and relaxation that is overdue. ((hugs))
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I hope 2012 brings good things for you and your family.
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I read all the way through your tenth birthday posting.
Hoping that if I try really hard I can send a little more strength your way with a giant hug.
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That looks like a very lovely item in the works in your pic with the knitting bag…can’t wait to see what it is! Peace be with you Julie…. 🙂
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Fortunately for us, holiday traditions are a part of our son’s need for schedule/routine/sameness. I so resonate with your heart, however,… concerns for the other siblings and dreams for Toby to experience the magic. Appreciate your post… your honesty, and your choice.
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I’ve been thinking of you over the ‘holiday’ season….why do they call it that, never seems like a holiday to me 😉
Where would we be without our knitting! Love that photo of the yummy wool and you in your birkies and PJ’s….looks blissful xx
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Julie, Do your circumstances prevent you spending time with your wider family?
Your efforts for A&H never fail to inspire me no matter what is going on around you.
You deserve every relaxing, creative moment you can grab.
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Oh Julie, tough times indeed. I do hope you are able to get back on an even keel now that school is up and running once more. I agree with a previous commentor that Amy probably understands and accepts her situation far more than you think and will grow up into a much more compassionate and deeper thinking adult than many of her peers – I’ve seen in with my own son, and in other families such as ours.
If you get the time, do get in touch as I have a friend who has been where you are now – her son is a few years older than Toby – and she has been able to calm him incredibly with some major dietary changes after getting various tests done. She is very keen to pass on any info that might be of help – she’s incredibly knowledgeable on the subject.
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Every time I read your blog I am in awe of your indomitable spirit and your approach to the often very difficult circumstances you face on a daily basis.
Even although we’ve never spoken or met, you are truly an inspiration to me and remind me of just how much the determination to have the right mindset, makes all the difference.
Thank you!
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Big hug to you. I wish I had some magic in my hands but as I do not all I can do is send you some good thoughts. Hope 2012 will come with some solutions for Toby and his difficulties.
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Happy New Year, Julie. I doubt that Christmas is perfect for a lot of people, and plenty more fib about it.
At least you all understand each other and have found a way to make it happen.
I’m glad you can write about it and I can feel through that how much you love your family.
PS I put those clogs on my Amazon wishlist last week!!
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As someone coping with chronic mental health issues, I say ‘well done’ to you. Perhaps our imperfections are what really make us perfect. Blessings. Jinny
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I say again – you are a very courageous lady.
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Dear Julie
First off I’d like to express my admiration for your creativity and for finding the time, energy and patience to keep this blog going. In your situation it can’t be easy finding the time for that, so chapeau – and I really mean it!
Don’t give up hope about Christmas and other special times. I realise this is not comparable with your experiences, but my 13 year-old daughter with DS got Christmas for the very first time this year, and was actually entertained by the fireworks on NYE (we live in Germany and they go MAD with them here) as opposed to being terrified by them.
Very best wishes for you and yours in 2012!
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Wishing you and all the family all the very best for 2012, Julie. Knit on 🙂
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If I could be a millionth of the mother you are I would be pleased…….xxx
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Happy New Year to you and yours — may 2012 see many of your dreams come true!
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I hope your re-charging is going well!
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All I want to do is give you a hug. So close your eyes and feel the warmth of my arms around you. With love from the USA Gale
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Hello Julie,
I love your blog, rabbits and cakes! The thought I have when I think of you is how very strong you are! With your challenges you make it work!
I too knit every chance I get, great therapy!
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Much love Julie. Many, many hugs. x
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You’re an amazing lady – hope you and your family find lots of tranquil moments in 2012 x
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I simply can’t imagine how difficult it is.
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Your positivity is truly inspiring. Thank you
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I wish you peace and an abundance of love and patience in the new year. xoxo
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Enjoy those tranquil moments ~ cosy up by the fire and get knitting Julie. Happy New Year! Marie x
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Thinking of you and your family. Keeping you in my prayers.
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Breathing is a good thing. Do it often as possible!
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Dear Julie, you are such an inspiration. Best wishes to you and your family for the New Year.
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I cannot say anything more than has been said, I admire you and I love seeing the beautiful things you make. Knitting is so good for the soul. I knit when I am happy and knit when I am sad, I wish I could make rabbits as good as yours, the last one I made had a rather overlarge head, although the dress was lovely. I am now just sticking to knitting anything other than toys!
Take care, and go placidly
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Thanks for a wonderful blog, you write so beautifully about your son. Thank you for being so open about your experiences, it has helped me along over the years of living with an autistic child.
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Thanks for your honesty and sharing not only your incredible talent but your tough times. I admire your ability to rise above the struggles you face, know that we’re in your corner – rooting for you every step of the way.
If I were a little closer I would have offered to blow those delightful bubbles for Toby while you took a little time off.
May 2012 bring you peace of mind and many, many memories you’ll treasure forever.
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Take care of yourself and hope that you are feeling more relaxed now. Big hugs xx
Alison
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Happy New Year Julie. I am filled with admiration at your pragmatic approach to the challenges of Christmas. I hope there will be lots of chances to enjoy moments by the fire in the coming weeks. Much love to you x
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Dear Julie,
A friend referred me to your blog. I am so glad she did.
I have 4 children , two of them have autism spectrum disorders. They are both (boy -the oldest and girl-the 3rd) high functioning (Aspergers, PDDNOS) but I can identify with you. Christmas is not so smooth sailing here either.Since my 2 are not severely autistic the reasons aren’t as obvious, so my expectations run a little too high. This could be another step in my learning to cope with the stress and anxiety.
Oh how I love the peace and quiet when they are all at school! It’s my time to go to God with all my cares . All too slowly I am learning to trust Him. He is my greatest source of strength.
Dear sweet mother of Toby and Amy, I pray blessings on you and yours. I pray that you know Him , His love , His power, His mercy and grace.
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My heart goes out to you along with a great big hug. You’re amazingly resilient and strong even though at times I know it must not feel like it! My thoughts and prayers are truly with you…
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Do make sure you get the respite you need Julie.It is only by really pushing that you will get it. A low functioning child like you Toby with autism is hard on the family not just him. 6 hours a month respite is cruel and laughable. We get what we want because social services are frightened we will do not do the caring anymore so give us now the respite etc I have told them we need. My son is like your Toby and I am main carer and has very limited patience with nonsense. So make sure you get what you need not what they say they can supply,
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You are an amazing person. We all go through difficulties in life, but I would guess very few of us have had to carry the weight of a trial such as yours for so very long. God Bless You and Yours!
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being new to your blog…and grateful that it has come into my Internet life, i read some of your archives and all i can do is echo what has been said by the others. And to say–with deepest sincerity–Thank you! for being who you are and sharing so much with us.
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Hello Julie
You really are setting an amazing example on how to live life. You are a very giving person, even managing to inspire others with your warmth and wisdom despite your very challenging circumstances.
take care
Daniela
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I just found your blog…not sure where I clicked from…But I can definitely relate to this post on many levels. I’m a mother of an autistic child too. Sometimes I get stuck wondering about bullying when she hits middle school or wondering what life will be like for her when we’re gone. But I do think the knitting and blogging also keeps me saner than I otherwise would be. Knit on, dear lady.
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I am aware this comment is quite late given the post date, but I couldn’t resist leaving a little note. I just stumbled haphazardly on your blog and was so pleasantly surprised with the warmth, honesty and love that permeated your entries. I don’t have an autistic child, though I’ve worked with them, and sometimes I can still share the sentiments you wrote here. My two-year-old has meltdowns over everything and it’s very difficult sometimes to cope. Thank goodness for cooking, crafts, and yarn. And thank you for sharing a little of your struggle, sunshine and rabbits.
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