All of the meetings to try and get some help for Toby have now taken place and we have some new strategies to implement – things that give increased structure and predictability to Toby's day which will hopefully lessen some of his anxiety. Our appointed social worker is lovely and very easy to talk to and she will continue to see us over the next few months and monitor our situation before deciding whether respite is appropriate or not. Toby's teacher and speech therapist are continuing to provide daily feedback and ideas and the paediatrician recognised that Toby needs some help to manage life at the moment and has prescribed melatonin to hopefully help him settle and get a good night's sleep. This is potentially the most impactful development for us right now as we're all exhausted from almost a month of only a few hours of sleep a night punctuated by extremely stressful episodes of tantruming from poor Toby. The prospect of a full 8 hours is pure bliss right now and I'm looking forward to getting the prescription through (hopefully in the next day or two).
So life here is looking more hopeful again and things are starting to feel manageable once more. Even my little hyacinth bulb is echoing the mood of optimism and is now in full bloom.
In terms of feeling postitive and optimistic, a little retail therapy never goes amiss does it? I'm normally drawn to shoes of a reddish nature but it was love at first sight with these spring green ones and I'm liking the thought that they're walking me back to happier times.
Thanks so much for all of the kind messages and sorry to everyone who is still waiting on a reply from me. I'm slowly working to catch up a little and things will hopefully speed up further once sleep has worked it's way back into our schedule!
little cotton rabbits 
Hopefully things will get better and better…
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Lack of sleep can certainly make a tough situation look bleak! You are doing an amazing job. Spring wouldn’t be as beautiful if it wasn’t preceded by a gloomy winter!
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I’m so pleased things are starting to come together and fingers crossed Toby will cope well with all these changes.
The hyacinth is looking lovely and very calming. (your photograph is great)
Loving the green shoes – very fond of a bit of green myself.
Best wishes,
B x
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That’s terrific news, I am so glad everyone has pulled together to get things moving for you all. I hope the melatonin does the trick – that’s a hormone connected to being calm and happy is it not?
LOVE the green dolly shoes!!
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I’m so happy for you Julie that things are looking a bit more positive!
Hopefully sleep will return soon and that will make a big difference to how you view everything.
I can almost smell your hyacinth here and I love your gorgeous new green shoes! 🙂
Vivienne x
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Really pleased you have better news to share. So glad the support is coming and life is improving for you all.
Hugs,
A x
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Hi Julie,
I
m so glad things are moving in the right direction and ill keep my fingers crossed for you that Toby settles soon.Take care.
Love Carole from Rossendale xxxx
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I am glad to see that you’re encouraged in your journey. Seeing light at the end of the tunnel can provide just the strength needed to make it another day.
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Fingers crossed that improvements come sooner rather than later , sleep deprivation is an absolute nightmare isn’t it. Sometimes things seem so much worse than they actually are due to tiredness . As for your shoes , love them and they look so comfy
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Oh I’m so glad things are looking up. And I’m now desperate for a pair of those shoes!
K x
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Sleepless nights make for extraordinarily tough days … I really hope the melatonin helps. It sounds like you have a good support network forming there – hurrah!
And as for the shoes – well, I need some, that’s all there is to it. Everyone needs shoes, right?!
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So glad things are moving forward. Hope you get that nights sleep very, very soon.
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It sounds like things are starting to get a bit better and if you can get some sleep I’m sure everything will seem much easier – but I know how hard it must still be each day. Sending you lots of love Lucy x
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Happy to hear things are looking brighter Julie. Love those shoes!
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Great news all around, here’s to a good night’s sleep for everyone. No need to write back, please just know I wish you all well.
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Hope things all come together for you soon, sleep deprivation is a terrible thing
Have you come across http://www.sleepsolutions.org.uk (face2face & scope) who are an amazing organisation & may also be able to help. They fully believe each case is unique & consider the parents the experts. No affiliation just heard them at a conference & was impressed although they don’t have a service in my area
best of luck
Chris x
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Hi Julie,
Our son recently started the same prescription and we saw almost immediate results. He copes so much better each day and my husband and I are absolutely thrilled.
You’re in my prayers.
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I am so pleased that you seem to be making some progress.Sleep deprivation is the worst thing.I have been wondering how Tuesday’s meeting went.Thanks for letting us know.We care.xx
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Glad you have had some positive help. I totally understand sleep deprivation as I had a dairy allergic baby, who went from bouncy hyper to sickly through each night. She has now produced a beautiful boy also allergic but we knew very quickly what was amiss and dealt with it. I know its nothing like autism but empathise totally and sending hugs x
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glad you are getting some constructive support, hope a good nights sleep soon follows.xx
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Glad to hear you have some positives in this situation. Also, great shoes.
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Oh it’s such a relief to read that you’re getting support and things may improve gradually. I so hope the melatonin works for Toby and for you all.
Your shoes are beautiful – the colour of Spring bulbs!
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Hi Julie, I am so happy that things are looking up for you all. I can’t begin to imagine what you are going through, stay strong and know that you are in our thoughts,
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Oh this is good news! I sooo hope this all comes together and sleep. Oh blessed sleep. What we can face when we have a good nights rest…
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P.S. Normally I’d have gone for the red shoes too as my fav color is red but… those green are just downright adorable!
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I’m truly glad that there is a glimmer of hope on the horizon for you all Julie!
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Hope that you can get some rest and Toby, somehow, finds peace. Wish that were a magic medicine for autism. There is always hope though.
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Happy to hear the hope in your voice! There is always another corner to turn, isn’t there.
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Sounds like you’ve had a very difficult time – I’m so sorry to hear that – but glad that there seems to be a silver lining on the cloud. The retail therapy looks very uplifting – those green shoes are a very happy thing indeed! Hugs
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Oh, phooey – I should have thought of the melatonin – but as I am no doctor, I shouldn’t have suggested anything anyway. But I take the stuff at night sometimes, too – when my brain won’t stop processing. And it works. I find that one tab does it. But two will backfire on me. Here’s a prayer or two for a solid night. Funny that you and Rachel neither have been able to get a night’s sleep for weeks. Maybe tonight the stars will align. Maybe the two of you will meet up in your dreams. The hyacinth makes you a promise. Maybe it really is making you a promise: after the trial of your faith, the miracle. After the winter, the gentle and glorious spring.
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Love your shoes 🙂 Hope the melatonin as well as other things make things better for Toby and you.
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GREAT NEWS,LIKE THE SHOES.
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I’m glad things seem to be moving forward for you and Toby. I hope it continues.
Janet
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Glad to hear that things sound a little more positive after your meetings. Retail therapy is a great pick me up and those shoes are gorgeous.
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You sound much more positive about things. I really hope that you all do get some sleep. Don’t forget to treat yourself to some good quality ‘me’ time, time when you can be a little bit selfish, and don’t have to worry about getting home to cook etc.
Liz Phillips x
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Thank you so much for ‘keeping on blogging’ even when you are so weary. The world of Little cotton rabbits is precious and we thank you for sharing it. Much love, the green shoes are symbolic of the steps forward you are taking! x
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I’m glad to hear that things are getting back on track! It’s amazing what a good nights sleep can do 🙂 Nice shoes!
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Oh wow – flowering hyacinths, shoes in sunshine, and the start of some helping hands. It sounds a though those new shoes are stepping in the right direction. We are all thinking of you and wishing you some sleep-filled nights soon – all of you!!! Hopefully there will soon be time for more retail therapy and knitting … JennyH.
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am so glad for you all that things are looking more positive. hope you all get a good nights sleep soon. I love the shoes!!
xxx
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Hope to hear things have improved for all of you soon. I have put the photo of your lovely shoes on my blog. Hope this is OK.
X
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From my side of the world, I am hoping that things continue to improve for Toby… with the first step being some much needed sleep for you all!! SOO, so loving your shoes, too! They are positively awesome! Take care!
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I am so happy for you! I understand the Hope that comes from answers like melatonin…please let us know how that works for Toby (and you). I did look into that back when my daughter was not sleeping well…she still rarely sleeps through an entire night. I LOVE your shoes… I need to find a store like that in the states!
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I’m so glad to hear that you’ve managed to get all the support in place for Toby! (hugs)
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I was led here by Alice C.
Melatonin has been a nighttime lifesaver with our Olive (she’s 9, and we didn’t hear about it until she was 5). It changed absolutely everything. She sleeps, and my husband and I no longer have to sleep in shifts.
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Walking back to happiness in new shoes – lovely! I’m so glad there’s new hope Julie for you and for Toby. Fingers crossed ….
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I hope things improve with more sleep. Hugs x
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Oh my, with those happy green shoes and the wonderful-smelling hyacinth I know things have got to be looking up for you!
Sherry @ A Happy Valentine
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You sound a little more positive Julie – I hope you get some restful sleep to give you the energy boost that you must need. I can barely remember my youngest’s first two years as he didn’t sleep night or day. We were completely exhausted, walking round like zombies. I LOVE those green shoes – my favourite colour and I love your little crocheted doily.
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Happy things are working out Julie – and those are about the cutest shoes I’ve seen in a long time! Wish you good sleeps! 🙂
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Julie, You’ve probably tried this… My ten year old ASD grandchild was soothed with low-key music, ocean waves, etc. At first with headphones… I love that the melatonin is natural, I hope it works for Toby. Melt downs are not fun, esp. in the middle of the night!
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A boy at our church was autistic and many prayed for him and he was healed. His mother is writing a book. Have you asked your local church to come and pray over your son and your home or done this yourself? It is amazing what God can and will do. Also my grand-daughter, who is not autistic, went through a time of waking up nightly very afraid. She is now calm. My son and his wife would pray over her and taught her scripture such as 2 Tim. 1:7 For God has not given us the spirit of fear; but of power, and of love, and of a sound mind. (KJV) I will keep you and your family in my prayers. Blessings to you all.
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I love the shoes and that’s wonderful news about getting a plan for Toby. I hope it all works out well for your family!
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I’ve probably told you before, but whenever I think of what a mother’s love can truly mean, I think of you. May you continue to get the help you all need.
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You’re a wonderful mom. Sleep well.
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I do hope the melatonin starts to work soon. Sleep deprivation is the very worst.
I’m sure it will benefit all of you once you start to have better nights.
xxx
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Julie, I’ve been an on and off stalker for a while now. Lovely blog. I’ve a similar life with a love of creative pursuits (knitting at one time) and a boy with autism. My son Jack is 16 now. I can’t quite recall how old Toby is, but my Jack went through a similar situation of anxiety and heightened OCD at about the onset of puberty. Finally, we discovered a psychiatrist who prescribed Risperadol. A lifesaver. Anxiety and agitation practically eliminated. Please look into it. For my Jack the only side effect is that it helps him fall asleep at night!!!! I give him 0.5mg Risperadol and 3 mg Melatonin at night. I also give him another 0.5mg Risp in the a.m. I have found that the melatonin must be cumulative because the positive effects kicked in over time. Keep giving it to him even if it doesn’t seem to be working. I live in the US and give him the Nature’s Bounty brand (OTC). Much luck and blessings to you and family. You will figure it out. It’s just a phase–truly. I know most people try to avoid medicine, but I’ve seen it perform many miracles in my life – so I am a true believer. I believe Medicine is a gift! Having said that, try other more natural things first, but if nothing seems to help, take that route. Love, MB
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