Thanks for all of the good wishes for a better night's sleep. It's yet to arrive I'm afraid but I've no doubt that it will at some point down the line. Sadly though it's only one of the aspects that are making life with Toby hard at the moment. His anxiety, repetitive behaviours and aggression are all off the charts and at the moment life feels like tiptoeing around an unexploded bomb, constantly hoping that nothing triggers it to go off!
One of the hardest things to face as a parent is to have to say 'I'm not coping with my child'. It's uncomfortable to say the least and I suppose we're quite lucky to have got through 9 years with a severely autistic child without having to make that call. Things have shifted though and with Toby's increasing size and strength and his inability to contain his rages and anxiety we've had to ask for help. I've made some calls to various professionals which will hopefully result in some respite care and exploring medication and therapy options to help him with his anxiety. It will be a slow process as the next available paediatrician appointment isn't until April but it feels good to have started the ball rolling so to speak.
Anyway, as an antidote to all of that I'm been furiously knitting. There are bunnies, mittens, cakes and scarves all on the needles at the moment – I'm working on the basis that the more knitting you have on the go the less time there is for worry 😉
I'm really pleased with this scarf that I've just finished. The yarn is so beautifully soft and flecked with little touches of different blues and the pattern is very easy (a simple 4 row repeat) and very pretty when finished.
Pattern: Little Leaf Scarf by Sivia Harding (free pattern)
Yarn: 'Moody' handpainted Alpaca silk sport weight by Old Maiden Aunt Yarns bought from Loop
Please bear with me if you've emailed me recently and have not had a reply. I'll hopefully be in touch soon x
little cotton rabbits 
There is nothing wrong with asking for help….what is wrong is the time they appear to be giving you any. Really hope you get the support you need and life becomes a little easier for you and the family.
Hugs,
A x
ps crafting is great therapy and I love what your making.
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I can’t even come close to imagining what it must be like for you, but I agree with Wipso, there’s nothing wrong with asking for help – good luck x
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I can’t offer any words of advice as concerns Toby, but you sound like incredible parents so don’t feel bad about asking for help, there’s no shame in it at all. The scarf is beautiful, thanks for sharing the pattern.
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Sometimes we all need help and there is nothing wrong with that,hopefully as you say it will benefit all of you. Your knitting is just beautiful, i love the scarf, such a pretty pattern.
xxx
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Gosh that scarf just oozes coziness and cloudy softness. Beautiful.
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Thinking of you Julie and wishing you some quiet, yarn therapy moments.
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It’s difficult to admit you need help, I know. I do hope you can get some support that will make life a bit easier – not getting enough sleep is so debilitating and everything seems magnified. Lovely scarf, I love that colour – I have to make an effort not to buy all my clothes in shades of blue!
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Oh, Julie. You’re so very brave to admit you need help – and I am glad youlre going to be getting it even if it is a little way off! Most of us don’t have the courage to admit when things aren’t going as well as they could – and the few times I have finally cracked and asked “the professionals” for advice (admittedly on far more minor issues) they’ve been very supportive, very helpful and thoroughly practical. I hope you find the same thing.
I’ll be thinking of you. Love the scarf!
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I love the scarf, it looks so snuggly soft. Good for you for asking for help with Toby. A little help will probably make all the difference, and you’ll feel much more able to cope with things. I think the hardest thing is asking for help in the first place, but now you’ve done that I’m sure you’ll feel much better about it already.
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Thank you for the link to the scarf. I have a cone of 4 ply wool that I have desperately been trying to use up and this would be perfect. I find it so hard to believe that you cannot get help sooner for your son. I hear it from Mums at school who have autistic sons. it’s not right.
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It is such a big step to ask for help but I’m so glad you took it. Medication, therapy and respite all seem to go against the grain of parenting but they can often be a light at the end of a very dark tunnel.
T x
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Sorry to hear things aren’t going well with Toby… I don’t think there is anything wrong with asking for help…worse would be to think that you can handle it all and for things to go from bad to worse and not have the support there when you’ll need it the most. You’ve got to think of the health of the whole family, including Toby’s. Take care and (((hugs)))
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Sometimes it’s very hard to admit you need help. I do hope you get the support you need, both for Toby and the whole family. Your scarf is quite lovely, and a beautiful colour. Very tempting, too, to cast on another new project!
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remember you are not asking for help for you, you are seeking help to find ways to make life easier for Toby. this is a good thing.
your scarf is beautiful.
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Oh Julie – never feel bad about your very special parenting. Lots of parents with far smaller problems need help from time to time. Your family are very precious to lots of people so please take care of yourselves and lets hope there is help fairly soon. Love, love, love the scarf and looking forward to seeing your other gorgeous creations. Take care, JennyH.
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Your bravery will help me to be strong (I’m not facing anything in comparision, but life can be hard). The scarf is gorgeous.
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Hi Julie, I so help that you get the help that you need.Please don’t think that you are failing Toby, getting him and his family,support is the very best thing for him and you all. Good luck. love Nina
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Hugs, Julie! I know our boys are not the same, but dealing with the anxiety and tantrums is by FAR our hardest thing over here. Esp. the anxiety. good luck and I hope you find something that works for him!
that scarf is gorgeous!
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There is no shame in asking for help Julie. As you say, you have coped for 9 years and it does sound incredibly difficult at times. I really hope you get all the help you need, and respite will certainly do you all good.
P.S. thats a beautiful scarf… can I justify knitting yet another scarf though?!
Love, Rosy
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Hi Julie
I am sorry to hear how difficult things have been with Toby, you have been amazing to have done all you have for him and now sounds like the time to get the support you need – well done for making the move it must have been very difficult.
I could’nt agree more about the knitting giving you less time to worry – it is my salvation.
Hubby still not fully recovered (he is a lot better then pre-christmas and has to go in next week for a procedure to help get his heart in a regular rhythm which hopefully will mean he will not need to take so much medication) and I am still running my pre-school business – so yes thank goodness for the knitting!
I am back on my blanket squares which I have dipped in and out of for a year, they are looking good although I am struggling to find Rowan Handknit Cotton in Lupin which is now discontinued (aaarh!)
I expect I will find some eventually.
Take care
Davina x
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Good for you in taking steps to help Toby. Life sounds particularly tough for all of you so hopefully April will come soon enough. Your scarf is beautiful by the way.
Pen x
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Hi Julie, firstly I’m sending you hugs and best wishes because I think you might need them at the moment!
You did the right thing to ask for help not just for Toby but for all four of you. The shame is that you can’t get it until April which is disgraceful.
Hopefully a combination of all those things you mentioned will make Toby’s life much more comfortable and happy for him!
And thank goodness for knitting therapy, your scarf is gorgeous. 🙂
Take care,
Vivienne x
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Sending you love and hugs Julie. Xx
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Wow Julie — that scarf if gorgeous. I’m so sorry to hear about the difficulties with Toby. I hope they will all soon be worked out — and that you’ll be able to have some much needed rest!
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This is such a pretty scarf…thanks for sharing the pattern.
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I’m praying that April will come quickly for you and that you have some improvement in between. Hopefully some sweet loving help will be just around the corner!
I love your scarf – Alpaca is just so comforting – I bet those guys don’t even appreciate the glorious fur they have growing all over themselves! But maybe so…Alpacas always have a smile on their funny faces!
Leslie
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A mother has to use her instincts, as I tell my daughter, and thats what you have done. To raise your beautiful boy in the best way for him you have taken a great step and I hope a balance is found for you and him. I knit my way through stress too.
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I’m glad you finally asked for help. Hard to do, I know. Thinking of you with fondest thoughts.
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hello my first comment on your blog but I have been reading for a while. Keep up the good work – hugs to you and your family.
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The hardest thing is admitting you need help, but it does have to be faced sometimes. Respite care might just be the saving grace – you will all get something out of it, and the quiet time it gives you is worth an awful lot. It is surprising just how much a day of peace re-charges your batteries and helps you to cope. As usual, the initial appointment is always what takes the time – I really hope that after April things move along at a faster pace and you get something sorted out.
The colour of that scarf is beautiful – I am drooling over it!
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I think you are coping with your child in the most incredible and loving way. It is the behaviours that are difficult to cope with. It will also be the tiredness that is making things difficult to cope. Getting additional help, seeking other solutions is not a defeat. It is the sensible and caring thing to do. Even just short periods of respite will work wonders for you all. You’ll see. And you will be glad you sought it out. Thinking of you all lots.
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Getting help when you need it is the sign of a wise and loving parent – that’s what the professionals are there for! You are doing your best for Toby and he will continue to benefit from your excellent love and care. We are sending you blessings from the States!
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Look at the quality of the people who love you. From all over the world. They see you through the work you have done, the words you put on the page – and look at their support. Well done, knitting girl. Well done.
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Thinking of you Julie. Hope everything works out and you find a solution that keeps you all happy. The scarf is gorgeous – such a beautiful colour.
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Asking for help is much braver than pretending all is ok. Well done all of you. I hope they come up with some useful suggestions and Toby finds a bit more peace soon.
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So many people have echoed my thoughts. Asking for help is the right thing to do. Much love. x
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This is so hard….. To those who haven’t been there, this will come across as, “I can’t believe you’d even think/say that”! But here it is….. and maybe I am a horrible person for thinking this.
I remember one particularly bad day with my son. He’d taken our baby who was about a year and a half at that time and pushed him down the stairs. My big set of stairs! Thankfully, we were right there and able to catch the baby. Trying to keep Levi safe. Trying to keep his siblings safe. You know. It is all consuming. You never rest.
In tears, I told my husband my fears. What if it got so bad and we could no longer keep siblings safe! What if we had to institutionalize Levi! And then I said it. I’d rather he die than me have to make that decision….. send my baby away….
Thankfully, we’ve not had to make that decision but being a parent of these special kids is hard! And the aching of our hearts…. and the exhaustion.
And even being exhausted you still manage to create such beautiful things…..
Toby is so lucky to have you as his Mum. You’re doing a great job. You truly are!
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Julie, you are amazing. Asking for help is absolutely the right thing to do and I do hope life starts to settle down soon for all of you.
Knitting is the very best for taking your mind off things. Your scarf is stunning – I love that colour :o)
xxx
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Hi
I read your blog regularly and can only say what an inspiration you are. I think I have a difficult day and you lift my spirits with your beautiful knitting! You are absolutely right asking for help and support at a difficult time. I hope you are successful
Zoe
xx
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There’s a lot of very good professional help out there… I’m glad you’ve decided to access it 🙂
Now that is a very pretty scarf!
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I’ve followed your blog for a while now – this post touched me so. My heart goes out to you – our 10 year old son has been diagnosed with Bipolar Disorder, and each and every day is a roller coaster …. we never know from one day to the next what we’ll be dealing with – anger, rages, depression and possibly even a good day. The professional help we eventually got for him on the recommendation of his school, has been an absolute Godsend – it’s helped our son and us in so many ways. It’s never easy having to admit it’s needed ( I resisted it for years), but it turned out to be the best thing we did. Hang in there:-)
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I can only echo what everyone else has said… so not sure why I’m saying it at all – but… There really is no shame in asking for help when you need it. Everyone needs help sometimes, and that’s just fine. When i started reading your blog, way back, I found it via the rabbits. I stayed for the mix of wonderful knitting and honest comments about your life. I’ve used you as an example many times to my cousin (who’s son is autistic) and my inlaws (who also have an autistic son). You’re no less of an inspiration now.
PS. also, that scarf is lovely 🙂
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Dear Julie,
asking for help is never bad!!!
You and Toby deserve all the help you can get.
And thankfully knitting helps to ease the stress a little, it’s a beautiful scarf, one other thing to put on my to do list!
I wish you all the best, a big hug from the netherlands
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To compliment you on your 9 years of care thus far as Toby’s mother probably seems silly. As a mother too, we just do what is needed fueled by our love for our children.
I have only seen patience and strength from you throughout your blog time and I think the real strength has been shown in you asking for help.
You are marvelous to recognise this and there will be many wonderful days for all of you when things have settled down.
Wishing you lots of good days between now and April.
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The scarf is beautiful. I downloaded the pattern, hopefully I can get motivated to start knitting, though it will be hard to match your skill!
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You are in my thoughts. I had a good chat with one of my patients earlier this week about how she feels about coping with her autistic daughter. I think i understand a little more about how truely challenging life can be for everyone. Never feel ashamed about needing help. The fact is you were brave enough to accept you needed it. Good luck with Toby in the mean time and lets hope April comes very quickly. Take care, B x
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Your stength is amazing and you are an inspiration Julie, there is nothing wrong with seeking help, that is what it is there for. xx Brenda
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How times have changed over the years. We now have to wait for help, which we are often at near breaking point when we finally have the courage to ask for it.
I am usually a silent admirer of your blog, and I’m always greatful for your honesty & positive outlook on life.
I hope the wait passes quickly and knitting gives you the lift that you so obviously deserve!
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Hang on in there Julie. One day at a time…
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You have taken the first step in getting help and support for your family, perhaps the hardest part is deciding to do that especially as a Mother’s instinct is to do it all herself. It’s a shame it takes so long to get an appointment when it is tough for you now.x
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I think you manage amazingly well and you should never feel bad that you need to ask for help. I’m just sorry you are having to wait so long for it. Take care and be kind to yourself, Lucy xx
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Hello Julie, I am sorry to hear you are experiencing such difficult times at the moment. I really hope that you will get help soon and hopefully a more relaxed family life. The other day I watched a beatifully produced film on German TV, which made me think of you and your family. The film was called “Der kalte Himmel” (The cold sky) and was set in rural bavaria in the 1960s. One of the children of a farmers family was highly intelligent but autistic, too. And at that time doctors would diagnose schizophrenia and autism research was at the very beginning. The film showed how hard the mother fought so people would accept that the son is not stupid but different to other children. (Here’s a youtube link to the film trailer: http://www.youtube.com/watch?v=ilEbezByvCQ ) Since then, doctors, psychologists and other experts on that field do know so much more so I really think that there must be a way of helping Toby and your family. I think asking for help just shows how much you care about your family.
The scarf does look beautiful, so soft and warm and I really like the pattern. I wonder if I should give it a try.
All the best for you and your family, Claudia
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Congratulations on being brave enough to ask for help. As a teacher in a special school, I’ve had many parents going through the agony of making that decision. respite care is wonderful, and benefits so many people. The carers are doing it because they really want to, and everything is dealt with carefully to ensure the best for everyone. When you eventually get a weekend of respite, you’ll be able to cope so much better. Good luck xx
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Beautiful scarf! Well done for asking for help, I hope you get it soon.
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Hi Julie, I can’t imagine how heartbreaking it must be as a parent sometimes to feel so helpless. I’m glad that knitting is good therapy for you.
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There is nothing wrong for asking for help, it is better you do that than get pushed over the edge. With sleep deprivation it is easy to lose it with a child who isn’t autistic let alone is so I think you have done the best thing. You need some time to yourself, everyone does! Take care xxxx
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Thinking of you all, Julie. Please e mail me if there is anything that I can do to help.
Love the scarf – such beautiful knitting as always.
Take care.
Love Zoe x
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Julie I remember this feeling so very well, I didn’t like my child and as you say felt like he was a bomb about to go off any time any where! You are doing the right thing, 9 years is a long time and you have honestly given Toby a wonderful childhood, filled with love and you have done your very best. Let the pro’s guide you, they see children like Toby all the time and know what works. I’d be scared too, especially about medication as that was my biggest fear for Bailey. If you need a sounding board I’m ready and waiting. I hope you get some sleep soon Julie xxx Thinking of you. Maddyxxxx
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Please don’t EVER feel guilty for any decision you make. We can’t all understand your very personal journey but it is very easy to see that any decision will be made out of love and the hope that it will keep you connected to him in whatever way is best for your family.
Just keep knitting . . .
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FWIW (and I hope I am not overstepping my place) when your sleep is affected it will send you a little crazy, making everything just that much more difficult.
Also, I work in a paed practice, but not sure how your system works. Don’t wait til April. Call every couple of days to see if there is a cancellation – dont wait for them to call you. The squeaky wheel gets the oil.
Just some advice out of concern
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I just wanted to add my support for you and to send you big hugs and hope that you get what you and Toby need quickly.
It is not easy for any parent – I had lots of times when the kids were little when I felt I couldn’t do it and now as a fairly new single parent (which was totally not my choice) I still think that quite often.
I too find it hard to tell people I having a bad time – I think that we feel we should be ok even we are longing to just shut the door and make it all go away.
Sending you all my prayers and hope that you find comfort from the bunch of random strangers that admire you so much – as a mum and a knitter!
Alison x
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Oh that is the most beautiful scarf. Thinking of you. Love, K x
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Hang in there momma, you’re doing well. Thank you for sharing your troubles – it helps others to know they’re not alone in struggling with parenting.
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Dear Julie,
I’m sending calming thoughts your way and hope that you find a few quiet moments with your knitting.
Marie x
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Handwork has always seemed the solution to nervous worry or sadness for me too. Wishing you strength (which I’ve always seen you have an abundance) and prayers for you all.
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Julie,
Olivia is now about to turn 9 too. Her sleep, as it always has been, is patchy!
It staggers the mind to think that a person can go for so many years with so much broken sleep, no rest and little peace, but we do!
I can remember talking with you all those years ago at Music Therapy about sleepless nights.
Who’d have thought all these years later we would still be awake and coping with it.
Asking for help is no failure it is, hopefully, a positive step forward for you all as family.
Take care
Kath
(from the old stevenage music therapy group)
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I have followed your blog for a long time now and just love your creations. I’m so sorry you a having a difficult time. You are in my thoughts and prayers.
Blessings,
Kay
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Oh Julie, my heart ached reading this. You’re doing the right thing in seeking help – we’re here to help each other and each and every one of us goes through a really difficult period in our lives. I so hope you get the understanding and hope you and Toby need – and soon.
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Hi Julie
Any kid with autism is hard work but those with severe autism are the hardest, My daughter is the same level as Toby ad she really made life difficult at times. She is now in a group home as I cannot cope with her at home. She is 21.
Get all the help you need and always make sure you tell them what you need and want otherwise you will be left to “cope” Alway writ down after each meeting the points you want fixed or provided and send your notes to the officials who are present at the meeting or at the phone call.Advocacy is what you have to became good at both for yourself and Toby
Karnak
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