I do like this little space here. Writing things to share with you really helps me to focus on all that's good and positive in my life and I don't particularly like sharing the negative stuff until I can see some kind of light at the end of that particular tunnel and can finish off what I write with a positive note. That's why I've not written very much about what's been going on here with Toby over the last 15 months.
(Random pictures from the garden this afternoon)
Last year I did mention that I had got in touch with social services because for the first time I felt that we weren't coping and needed some respite help. I did touch on the nights (with Toby being awake for 5 hours in the middle) that leave us feeling exhausted and have forced us to change his room around. But I've not really mentioned the drives I took him on regularly at 3am with both of us in our jammies and me barely awake just to calm him down from a screaming state (because being in the car always calms him) so that Amy could get some rest before school the next day. Nor have I dwelt on the extreme self harming that progressed from the handbiting, nor the aggression that had me feeling frightened of him for the first time ever. And I only mention these things now because thankfully things have moved on and we no longer seem to be in such a desperate state of affairs.
This time last year we were awarded 6 hours of respite care a month, with Toby spending this in a one day chunk at a specialised care facility kitted out with sensory room, indoor play area, quiet room and a lovely outdoor play area. Whilst this was wonderful on the one day a month that he spent there, it was so infrequent that it didn't have much impact on our family life. At last, after lots of meetings and assessments we are about to have a substantial increase and from April 1st Toby will be going for a one day visit most weeks, especially in the school holidays. I have a feeling that this could make a big difference to our family life, giving me a little more time to spend with Amy while she still wants to be with me and helping Toby feel less frustrated by filling his time with more to do.
Over the last 8 months I've also been seeing a psychologist at the challenging behaviour unit who has helped me and Toby's teacher develop some strategies for managing his injurious behaviours a little better. At school he was having to be confined to a 'quiet space' both for his own safety and that of his classmates and at home I was often having to physically restrain him. It's obvious now that these two things were adding to Toby's anxiety and driving his behaviour to worse levels and now we just let him handbite and fling to get it out of his system and he's managing to bring himself under control again without so much adult intervention.
At night H and I now take it in turns to sleep with Toby in one of the 3 double beds up for grabs at our house. Toby tends to start the night off upstairs with me and after his usual 3 – 4 hour nap he trundles downstairs to climb in with H on the sofabed. He then fidgets and fusses for a few hours before usually drifting back to sleep for another couple of hours, though often he does stay awake for the rest of the night. It's not a perfect arrangement and it needs improving but it's a lot better than it was because at least Toby is now calm and quiet and Amy can get a full night of uninterrupted sleep. In the last 18 months he has only slept through the night 5 times and he has recently been referred to Guys and St Thomas's hospital sleep disorder clinic. While I'm not sure how much they can help, I'm keeping an open mind and waiting for our first appointment.
All of this puts us in a more positive place than we were in March 2011. Most of the time I feel confident again in helping Toby to manage his behaviour and I don't often feel frightened of him – I hope this lasts as he's going to be a big chap once he's finished growing.
The last positive thing and the definite icing on the cake is pooh! Sorry, but it is exciting when your 10 year old decides to use the toilet for a pooh for the very first time. I can tell you that I was whooping and cheering and clapping like a mad woman so he was in no doubt that this was a very good thing. We're still a long way away from saying goodbye to nappies permanently but things are definitely moving in that direction. See, a nice positive thing to finish on.
Happy weekend everyone and thanks for all the well wishes on the previous post – we're getting well again x
little cotton rabbits 
Julie, I am extremely moved by your post and saying lots of ‘thanks’ for your new positive outcomes…sorry this is not sounding very eloquent. I rarely comment on blogs – although I am a blogger and I think yours was the first that I ever discovered. My son has a severe bleeding disease and perhaps the hardest things to come to terms with are my fears, frustrations and the almost constant desire to wrap him in cotton wool. Amongst the things I find uplifting is your stories of honest family life and huge courage – (most of the time I know courage isn’t really a choice – its a necessity) thank you – if you ever think you are speaking into a void, you never are – I think you bring hope and encouragement to such a wide number of people. Please have the most lovely weekend.
Emma
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I so admire you. You are an incredible woman and very inspiring. Hugs.
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Oh Julie, I read this post with my smile getting bigger and bigger. I am so pleased and delighted that after 18 months you are finally making headway. And the poo? I understand that level of pleasure and excitement about it, I really do.
love love.
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You are doing so well… and I am so glad that life is a little better for you all… I have so much admiration for your family… Keep strong… Losh
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It’s great you have so many positive things to share. I totally understand about the poo on the loo!
Have a lovely Easter x
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What a very complex set of issues to tease apart and sort out. It is lovely to hear that things are getting a little easier for everyone again, and that practical solutions are being found.
All the photos are wonderful, but I love that you end with such a gorgeous picture of Toby’s big grin!
A happy weekend to you all too,
N xx
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A beautiful post. You must inspire so many. Thank you for sharing it.
Hugs,
A x
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I’m with you about blogging through rose coloured lenses. I’m glad you have had some good outcomes and can see some light ((HUGS))
Thank you for sharing – you have a real gift with words.
I too loved seeing Toby’s smile.
Love and hugs to you and your family
Leanne NZ
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What a lovely, positive post Julie and such a BIG grin at the end. I can’t begin to imagine how exhausted you all must be running on so little sleep with so much Toby stuff to contend with, it must be such a relief to have all those extra respite days hoving into view. Here’s hoping everything just goes on getting better xxx
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well done, such a positive post. I hope things carry on in this way.
xxx
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I’m so reluctant to give advice, as I’m sure you’ve tried everything, but would a lava lamp on at night help at all? Our daughter didn’t sleep through the night till she was four, when we moved house and for the first week she had no curtains and a blue flashing light outside her window as we couldn’t turn off the burglar alarm!! Fortunately it was silent, just flashing. I do hope you get the extra support and it makes a difference.
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You are such a wonderful mom…I cannot imagine what you, Toby and your family goes through on a daily basis, but the love you all have for your son is an awesome thing..he is adorable and although a challenge, a true gift. He is so very lucky that God put him in your care. My best to you and the entire family..I am so happy you are finding a bit of relief and much needed rest. You’re truly a wonder….
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Aw, my heart really goes out to you and all your family. I’m so glad that things are now going better for you all but I’m so sad to hear of your struggles, it is very true how we know so little of the reality of other people’s lives. Thank you for continuing to inspire us all. Well done Toby too! 🙂
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This is one of the most uplifting posts I think I have ever read Julie. So often when you have bared your soul I have really felt for you but todays post was so positive and happy (pooh included)it really made me smile.
I am so glad things have improved for you as a family and I’m sure you and Amy are going to have wonderful adventures together.
Your photos are lovely, I really love the lichen covered pots and that great big smile on Toby’s face!
Have a great weekend,
Vivienne x
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What a happy Toby picture. And happy news too on many fronts. Good to know you are getting some help where it is useful.
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Dear Julie, You are such an amazing, strong woman, my love to you and your family as you face your ups and downs. I’m glad to hear things are on the improve for you all, I hope this continues to be.
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So happy for you that things are getting better.
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Thank you for sharing. I am a carer for my husband and often feel lost, I also share the care of my grandson and am tired beyond belief some days but we carry on regardless. I am so glad you are getting some help ona more regular basis and there is a little light at the end of your tunnel. Yur blog is truly beautiful and I wish you love light and sleep xxx
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You are an amazing woman! Your family is so blessed to have you. I have never walked in your shoes. I cannot begin to know the despair you must feel at times.
Keep up your amazing strength! Hugs to you and your family, Pat
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Julie, Yours is one of the few blogs I read regularly – and not just because of the gorgeous pictures you take or the lovely little creatures you make – but because it’s real and it’s not all rainbows and butterflies. My heart has gone out to you and your family many, many times. I very much hope that the light at the end of the tunnel will continue to get brighter.
Thank you for this uplifting post.
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Each life is normal in its own way. We look at other people and assume their lives are normal – but really, each person, each family has to learn how to function with the set of variables they find themselves with. It has been said that, while a person may complain about his or her situation, when offered the “chance” (I suppose theoretically) to exchange their lives with the life and situation of someone else, the person chooses her own. She knows it. She has built a life around it, and the other person’s problems are something she doesn’t understand, doesn’t want to have to learn to deal with. Perhaps, most centrally, she would have to give up the people she loves and take on new people, with whom she has no bond.
Sometimes I’m awake almost all night long. But it’s not for someone else. It’s just my brain, not shutting off. Neither of us are up all night, wondering where our son is with the car, fearing he’s with bad friends doing bad things. My daughter’s brother-in-law was like that. And finally, at nineteen, he died of an overdose. His mother was grateful that he had died alone – not taking anyone with him, not driving in a car and killing a family. He came from such a good home, too.
Mortal life is not a simple thing. We have the choice to meet it with avoidance, escape, depression, resignation – or with determination, love, deliberate and measured action. That is what you do – the brave, honorable and loving thing.
And I love you for it, even knowing that there are times when you think you can’t make it through another day. And all the time, you also choose to make beauty and to serve other people as well.
It’s an honor to know you.
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If the world were full of people like you it would be a good place to be, keep smiling and hoping, if good wishes could help, I send you bucketfulls & bucketfulls.
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I must agree with the others and say i am very moved and very close to tears by your post today. i can understand fully how difficult things can be, my sister has a son with autism and it has broken my heart to see her struggle with him being accepted by other children, with how to cope and struggle to get help, it has also been a joyful experience when things have fallen into place but that said its been a long and very bumpy road. now this said i have the luxury of being able to go home and leave it all behind me but it doesnt mean it goes away, of course i help as much as i can and as i said its heart breaking to see my sister in tears when she cannot get the help she requires. im so glad that you have got the respite you and toby deserve.
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Oh Julie…thanks for sharing your positive news…a little beam of sunlight for Toby and the family…wonderful to see his smiling face! (Big cheer from here for the poo! Know what a huge step forward that was)! Love your photographs of growing changing things, reflecting everything that’s happening. Have a happy weekend! Jenni xx
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How brilliant that you are at last getting some practical support to help your family. Having regular special days with Amy, knowing that Toby is happy himself too, will be wonderful I’m sure.
Hope the poo success continues!xx
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I am full of admiration for you and your family, Julie.
Life is slowly easing for you all. Three cheers for that.
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I remember reading your post last year about receiving the one short day a month respite and really feeling for you. There was a lovely lady who left a comment about him now being in the system and that hopefully his and your needs would be recognised and you would receive more help in time. So glad to hear she was right and that the time she was refering to has finally arrived. I have nothing but admiration for how you and your family struggle through but always find something positive to celebrate. And I will always be grateful to you for keeping me grounded – it puts my vey insignificant problems into perspective and makes me recognise how lucky I am.
I hope you all have a wonderful Easter together and that there are many more toilet experiences to celebrate!
Becky x
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I’ve just put down my knitting to read your blog – and re-read it, and re-read it to take in your situation.
I do so admire your positive attitude which can’t always be the easiest approach!
I discovered your blog three years ago (just before Easter oddly enough) when I was seeking solace which you helped me to find by renewing my interest in knitting.
The knitting I’ve just put down is your Bunny Egg Cosy which I’m making for my granddaughter’s first Easter – what joy to be able to say that!
I do hope that you are given all the help that is available to bring the peace and joy which you so richly deserve.
Thank you for the photos – good to see Toby smiling.
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I’m so glad to hear that you are finally getting a little bit more respite. Thanks for updating us all. You are one inspiring woman Julie. Sending you the tightest of squeezy hugs. Love, Tina xxx
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So lovely to see a smiling Toby. I’m so glad you are getting some more help – as a carer for someone at the other end their life, who can be totally unco-operative,I know what heavy going it can be. I felt like cheering when I read about the poo! Hope you all have a lovely Easter.
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That last photo!!! I just sat and looked at it for such the longest time! Toby is smiling and looking at the camera…….. such a beautiful boy.
I don’t know how you do it Julie. How you’ve held it together for so long. The challenges you face and do it so bravely. You are such an inspiration to all of us. The way you keep going and are so positive. The things you hold in your heart that you’ve given us a glimpse of….. the fears of the future……. oh gosh they hurt! But such good things are happening. I’m so glad you are getting more help and are seeing positive changes!
And the pooh!!! Oh my gosh the pooh!!! When Levi poohed on the toilet I ran screaming down to my neighbors jumping up and down on her porch!
Last night I was folding his clothes and his gazillion pairs of undies that he goes through a day. We’re not perfect and there yet and out of the nappies either but man we’re close and it is sooo nice! I can just imagine you jumping and screaming and clapping your hands. 😀
You are such a good mum Julie. You truly are. The way you try to spend quality time with Amy and your H and the way you take such good care of Toby. God knew what he was doing when he sent Toby to your family. I see my children and who they are because of Levi. Amy is growing up the same way. She will be an even better woman because of the experiences she’s had growing up.
Gosh I just love that picture of Toby……..
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Just read your post and am so uplifted by it . You have such a fantastic attitude and though I have never had to go through anything like what you have on a daily basis, I so admire you. May this be just the beginning of more positive things for you and your family.
Best wishes
Fiona
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You are an amazing lady Julie, and i think you and your family are an inspiration and so strong. Well done Toby, your mum is so proud of you. Amy will always need her mum and I think Amy is wonderful too, very patient and understanding. So glad social services are helping you all now xx
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I am always moved when you write about Toby, and my heart goes out to all of you. Amy because she is, bless her, so understanding and undemanding, You and H for managing to stay together and cheerful in what must be, at times,a very stressful life. And last of all, Toby, trying to make sense of the world we live in when he’d really like to stay in his own world. I’m so glad your respite is increasing, but it still doesn’t seem much. I’ve got twins in my class-both in wheelchairs, one autistic and with heart problems too, but they are having a week of the holidays in respite. Hope you have a good break. Liz xx
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I understand your emotions. Thank you for helping me not feel alone with my son. He is now 16 and it has got alot easier. Unless you have lived in eather of our shoes for at least a month, I always say you cannot understand the relentless, draining, tidelewave of emotion and pure exhausting rollercoater of daily living with our lovely boys. The constant juggling of the requirements of the siblings, who to them this is normality. No it is not, but we do our best to give them normality. Thank you Thank you Thank you.
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Your life is tougher than a life is supposed to be. My family is lifelong friends with a family that had a child who required round the clock care for almost 40 years. Their life was so difficult, but in spite of it all, they managed to live their lives to the fullest possible.
It cheers me to read that things are enough better that your family is feeling some relief and perhaps a new sense of hope. I wish you all the very best.
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I love you!
What a wonderful, beautiful person you are!
And although you may worry about Amy, I know she will be a beautiful and strong person when she grows up! Because she learned from a very early age that not all is perfect and that you can still see the beauty in things!
I know because I am a big sis to a brother with down syndrome and autism.
Thanks for sharing the positive news!
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Thank you for being so honest, Julie. The exhaustion you feel must be beyond what most of us can imagine…..and yet you create such beauty with your handwork, your photos and your words. No doubt you could paint the Sistine Chapel on a full night’s sleep!Please know that people all over the world are thinking of you and praying things will get easier.
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I’m so pleased you will be getting more respite – that will make a substantial difference especially during the school holidays. Toby will come to relish it too once it is established into his routine.
Excellent news about the poo – had a discussion this week about poo with my friend whose son is autistic and used to smear it up the walls. It’s one of her major joys that he now uses the toilet and the house no longer smells! So I totally understand what a fantastic achievement this is for Toby!
It’s brilliant that things are so much better for you than this time last year – in the greater scheme of things sleep, peace and poo are pretty high on the list of priorities, and to be on the road to mastering them is wonderful – well done Toby, and to you for getting him this far.
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I think you are wonderful.
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I am so pleased that things are more positive for you all! take care xx
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HELLO, THIS IS MY FIRST COMMENT ON A BLOG! YOU SO INSPIRE ME WITH YOUR POSITIVENESS AND HUMOUR. YOU ARE AN INSPIRATION TO US ALL, BLESS YOU.BY THE WAY I’VE DONE ALL SORTS OF CRAFTY STUFF IN MY LIFE BUT YOUR LITTLE COTTON RABBITS REALLY ROCK!
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Thankyou for a lovely positive post. I really hope and pray that things continue to improve for your family. xxx
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I am humbled just trying to imagine your life.
You must be a very special person to be charged with such a task.
God Bless you and yours. x
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Thank you for sharing and being so honest , so much emotion but overwhelmingly knitted together with love.
Have you tried a weighted quilt for Toby a lady I know makes them for a Children’s respite centre that say some children with autism like them as it makes them feel secure at night.I have details if you would like more information.
M x
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Julie, you are a special person. Even tho there are days where we run out of “cope” you still rally and come back strong. Admiration isn’t even an adequate word for describing you and your whole family. You are way beyond that word. Just know we are all here for you….
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Not many blogs touch me like this post did. You are an inspiration. You are a remarkable woman.
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Blessings to you. That is good news. I pray that you will have continued improvement in Toby and your family dynamics.
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Dear Julie, amazing person! God Bless you and your family. As I read your post, I remembered a mum in school telling me how her child’s behavior is drastically affected by the foods she eats. Particularly, certain preservatives or colorings. Perhaps its something you want to look into for Toby’s change in sleep patterns or moods.
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Hi Julie,
A very moving and honest post – I hope this years continues to bring better things for Toby and you all. Well done on remaining focused and positive. (And the poo issue is brilliant – whoop whoop!) 🙂
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That’s such great news that you are finally getting some really useful help and that the nights are getting a bit easier – although they must still be so exhausting. And that’s a lovely smiley photo of your precious boy! Lucy xx
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Julie your post moved me to tears – i am soo happy for you that things seem to be getting better and at last you are getting some much needed help. I feel you are one amazing woman and an inspiration to us all. xxxx
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Julie I have a 27yr old daughter with Aspergers syndrome and an Autistic 21 yr old son. Things will always be tough but the breakthroughs sometimes soften the heartache..I hate jumping through hoops for every little thing it is so exhausting and time consuming and at times of dispair impossible to do..The winter months are always the bleakest.All too soon you will be told Toby is an Adult and they will want to interview him ,having no knowledge of him whatsoever they will in the space of an hour tell YOU how it is going to be.You have to be prepared to fight for his rights .When he is 16yrs old they will try to take his benefits away and lessen them.Seek out advvice from the C.A.B.yes I speak from experience .I am trying at present to get help for my daughter so I know all about how ignorant people can be .I really am glad that certain bathroom antics are being overcome even if it is erratic..Yes I fully understand the whooping with joy bit..It,s not all bad all of the time you just have to laugh loud and hard when you can and cry when nobody can see you..You are a person in your own right ,well at least thats what I am told by well meaning people who are clueless..Offer them your shoes and the burdens you carry and you find they melt away like the good friends they never were..Keep Breathing and annoy as many knowalls who know zip for as long as you can .After all they are paid well to do a job that they rarely do well..Sometimes you find a gem of a person who really helps but in the main they are working for the wage and at 5 0 clock they go home to their nice lives and you are easily forgotten..OXO..Clare.
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Julie you moved me to tears,tears of happiness I think your positive attitude has got you through each day,you are a fantastic mum,may you continue to have strength and courage
To look after Toby god bless your family x
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Thank you for the honest and balanced post on your family. We had a similar incident this Christmas as the holidays became too much for our 19 year old daughter to manage. I told her I couldn’t manage on my own and had to take her to Emergency, and follow up with a doctor’s appointment and therapy. As a nurse I was afraid how my community would treat us, but they were full of compassion and things are a bit better.
I know you are doing everything you can. It’s hard to know how and when to get help. Well done.
I also love reading your amazing commenters.
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Oh, Julie – so glad to hear about the added respite time! And to hear that things are, overall, better than they were this time last year. And more (and better) sleep can only help!
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Hiya,
I am so glad things are coming together for your little family. It is the same thing in our house and the little things like the pooh may sound really silly to others but a MASSIVE thing to you. I remember when Jennifer was dry for the first night……….I think i did the little jig and Jennifer was 11 years old.
You just keep on plodding.
Luv Jane XX
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Aw, Julie, I whine enough on my blog for the both of us. 😉 I’m so glad to hear you’re getting more respite hours, and congrats to Toby on the potty!
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I love reading your blog! You are such a sweet and inspiring lady, and your knitting is the best and sweetest. I just love your photos, and the ladybug is especially cheerful – they say ladybugs bring good luck. Easter blessings, Shari In Ky
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Ask for more respite Julie
Be like Oliver in Oliver Twist and ask for more
I have finally got what I wanted in terms of respite because I said I had enough with the e stupid rationing rubbish and I wanted more. My son who is also is entering adolescent and I know where you are coming from. I look after myself these days because if they don’t help me, they will be providing care for my son.
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Julie, I am at a loss for words…….
sending you all my best wishes for continual improvements however small, I realise that each one is cherished.
Fleur xx
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Hi Julie
I have been reading your web since last November drawn there by your Little Cotton Rabbits and drawn back by your admirable blogging. I am so glad that you are able to move forward with Toby’s care and that you no longer fear him. Of all I read in your blog, that is what brought tears to my eyes, how simply horrible to be afraid of one’s own child. I can see it, and understand it, especially as Toby grows taller and stronger. It gives a sense of lack of control which you had when he was younger.
In Canada all High School and even some university students must do 40 hours of Community Service in order to graduate, have you considered approaching a local high school guidance office to see if any students would be interested in helping with Toby after school or on weekends doing games, walk to park, art ,jumping on tamp. It would be a win win situation as Toby would be exposed to more people socially , freeing up a little time for you and Amy and they get their hours of service. Many students are planning to go into teaching or social work or nursing and would like the practical experience.
At my daughters high school they run the C.O.P.E program. This a program where the students with the help of trainers train dogs usually Golden Retrievers to be companions to physically and developmental disabled children.I have seen how Autistic students respond to their dog and it is amazing to watch the effect it has on the child’s behaviour.
I looked after an autistic boy after school for three years. His food was regulated.
He had allergies, no glutton, no milk without these his behaviour was much better.
Is your husband handy? If so, what would happen if he made Toby’s bed move very slowly (not the whole bed but the mattress section) kind of like a car. Would the motion be like that of a car to him and would he settle to sleep?
I admire your strength, your courage,and your love.
Here’s to all the new possibilities the future holds………Jennifer
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If Diana can do it then so can I! This is my first blog comment too! My other first today was donating to Alzheimers research after hearing the very brave Steve talking about his wife with early onset disease on the Jeremy Vine radio show. I’m not a fan of the show but just catching Steve’s voice reminded me that there are so many very ordinary (in the best sense of the word) people doing extraordinary caring. My son has not so severe autism and I do not so beautiful crafting … I am constantly amazed by the beauty of your photography and the delicacy of your knitting. I hope this can be the start of me finding my blog voice. Thank you for the inspiration.
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Wonderful news on the poo front! Well done to all of you but especially to Toby. A friend used a sleep clinic to help her severely autistic teenage daughter with excellent results. I do hope it is helpful for your family too.
Happy Easter and all good wishes for continued improvement for Toby. I loved the photo too!
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WONDERFULL PHOTO OF TOBY, HAVE A GOOD EASTER JULIE.
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julie my english is very bad, but i don´t stop to try read your post,i come back for tell you the wonderful bunnies that you knitting, but i cry to understand that little thing ,poo in the bathroon is very , very important.
my mum have alzheimer and care her, is so dificult, extenuant,start every day (she only rest in your bed) ,and work in house, care the children (3), my terapie is my craft.hugs for you, force and much love.
Paulina
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I’m so glad things are looking up. I’m sure it must be scary to see your kid in pain and not be able to help him out of it. I came for the beautiful knitted creatures, but I say because of your beautiful honesty about your life and work. Thank you for sharing.
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Hi Julie – Your post really rang true for me as I too have an autistic son. He’s 12 years old and only in the last 2 years has he started sleeping through the night. He still wakes anywhere between 4 and 5 but he has instructions not to leave his room until his clock says 6am and generally (although not always) he sticks to it. On the nappy front, he was also in nappies until the age of 7 when we took him to a specialist dealing in the stomach and bowel (not sure what you call them) and he said there was no physical reason why our son couldn’t use the toilet so we should just take the nappies away and see what happened. We did that and it worked!!! We had one or two accidents but all in all it worked well. Up until then I couldn’t even get him into the bathroom and he’d start screaming and throwing himself around but once we left it up to him, he was fine. He wouldn’t flush the toilet for many many months (he didn’t like the noise) and we still have an issue with this but at least he’s no longer in nappies. So I wish you huge amounts of luck, I send love and light to help you on this very difficult but often rewarding journey and massive hugs to let you know you are NOT alone. Hope you keep in touch. Lots of love, xxx
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Julie this post is full of so much good news. It’s wonderful that slowly but surely things have been getting a little easier for you all. I’ve been inwardly cheering all the way through. Hurray! Much love Emmaxxx
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Dear Julie
I am very happy for Toby, you and your family. You are a brave woman! Best regards Lucy
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What a fabulous post. I know exactly how you feel about the toilet, my son has ASD and the night I came home from having a hip replacement eight weeks ago (I’m 33), a throw away comment from my husband made my son refuse to wear nappies that night and has been (almost) dry at night ever since. Dry during the day took a little longer until we went with no pants but the sence of achievement and wonder is incredible. Go Toby xx
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I have followed your blog for a long time. Your work is absolutley beautiful and I truly enjoy hearing about your family, especially Toby. I have a grandson with special needs, and I can certainly appreciate your excitement and pride with regard to Toby’s poo issue. To me, this demonstrates that your strong maternal instincts and dedication to providing your son and family with the best quality f life possible are working. Congratulations to you!
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You are amazing Julie… and Toby is gorgeous! Happy Easter, hugs, Jill x
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Oh Julie! I’m so glad to hear thing are on the up… I wish you and your family a lovely Easter… Big hugs!
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julie – you are truly amazing! i am so glad to hear that you can look back 12 months and see that things have changed in a good way for you and your precious family. i hope you are having a good easter break.
love louise x
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Thank you for bring so real Julie. You are a beautiful lady – it comes through in your writing. Toby is very blessed to have such a wonderful mum and I am so happy for you and your family that you are finally getting some of the help that you all need.
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Hugs to you and to your family. This sounds like an unbelievably trying time… and yet you manage to focus on the positive. Kudos for that! I’m keeping my fingers crossed for more positives.
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have a nice easter week end all !!! Julie you are a wonderfull mum !!!
bisettes from Provence
sofie
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Amazingly moving post. Hardly know what to say other than I admire your honesty and am in awe of how you manage to cope given such circumstances. I am so glad to hear that you are going to receive some more help which will be a great relief to you I am sure. You post is very humbling and makes me realise that small issues we sometimes have are so very small in comparison to others. I wish you well and a Happy Easter to you all. And oh yes Im still trying to get one of your wonderful rabbits!!!
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I think it’s so amazing that you continue doing all that you do – and that you are so loving and patient. I’m glad we’re able to share in a little piece of that love by reading along, thank you so much.
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Catching up with blogs today and so happy to read your post Julie. It must feel like such a relief for you to be finding solutions to some of the problems you face as a family. Lovely photo of Toby.
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Excellent news Julie! I am so glad for Toby, you, Amy and Hugh. I hope things keep getting better and better …
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Hi Julie,
I have only been reading your blog for a short time and it’s been a real eye opener for me… I am Step-mum to a wonderful 10 year old boy who has moderate autism and a learning disability. I struggle on a daily basis with many of his autistic traits – the constant demands, the agitation when he doesn’t get what he wants immediately and the constant fear that someone will question my ability as a parent. Of course there also the longer term fears about how he will manage in the future and how we will manage in the future. Reading your posts has given me a little insight into how my husband feels about our son and why he reacts the way he does sometimes. Thank you for your honest words about how you feel and deal with Toby and family on a daily basis. Helen
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Dear Julie,
Thank you for sharing these precious glimpses into your most private life. You are a remarkable woman, wife and Mum. I am delighte to hear that your son is getting more respite time. I hope that this is helpful to him and your family in the coming months. The photo of him at the end of your post is so sweet. We are gingers also, and I love to see another beautiful redheaded child. Sending you love and hope from across the sea.
Susan in America.
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Sorry not to have read this earlier, been out of touch as have been away. So glad that you are getting more support and that you are all feeling better.
Thank you once again for sharing things that must be difficult – another post that made me cry (in a good way) for you and your family and all the little things that make life worth it – loved the final pic of Toby.
Take care and know that you are doing such good with sharing all of this with us – not only for those who have similar situations but others who don’t to help us all understand a bit more.
Alison x
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Julie you inspire me so much, you near on bring tears to my eyes each time with your commitment and honesty.
huge whoops here for the toileting 🙂 and extra huge hugs to you and your family for fighting through this and finally getting more respite help which benefit you all so so much
much love and hugs
deanne x
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I am always moved by your posts about Toby. I simply cannot imagine how you manage to stay so positive in the face of adversity and with sleep deprivation. You are a total wonder and a wonderful parent doing the best for ALL of your family.
I am SO very pleased to see things are on the up for you and yours. Long may it continue.
Hugs
Sarn xxx
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Tobi is so sweet¡¡¡¡¡¡¡¡¡¡¡¡¡¡¡¡¡¡
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