If you drop in here regularly you'll know that I do my best to keep my blog focused on the happy aspects of my life and mostly on my knitting. But ocassionally there's a need to give it a little flavour of what is going on in the background as there are times when I struggle to be positive and carefree. So today I'm going to be self-indulgent and get something off my chest so that next time we can go on with the business of knitting and having some gentle fun.
Since Toby was diagnosed as severely autistic I've had times where I'd wake each morning with a feeling of expectation and find myself thinking "things will start to get better when…" …he starts nursery, …he starts school, …the summer comes… and thinking in that way is probably a saftey mechanism that has helped me get through some especially tough times. The problem comes when the realisation hits that things haven't got easier and I start to think "what if this is as good as it gets?"
This weekend I realised that I had got through the summer
holidays by thinking that once Toby was back at school
things would be better – foolish thinking because of course they are not. In fact the last week has been one of the toughest for a long while. For a start Toby slept less well than usual (and usual is bad enough!) but he's also been incredibly restless and demanding and the constant high pitched keening noise that he makes when he's distressed is especially hard to take.
Because Toby can't communicate we were left guessing as to why he was so out of sorts and then on Sunday evening I made a breakthrough! I spotted a wobbly tooth. I don't think it was actually causing him pain – it's just the fact that it felt different and in Toby's world different ain't good!
This kind of sums up autism – that something as simple as loosing a first tooth can cause so much angst and distress and in turn push a family to the edge of reason. We're all very grateful that yesterday the tooth fairy zapped the offending tooth and since then Toby has seemed much happier and actually slept through last night!
* Since the offending tooth has disappeared without trace (probably swallowed) I've had to use a stunt tooth – one of Amy's which the tooth fairy let me borrow (just incase she reads this!)
little cotton rabbits 
How wonderful to have a full night’s sleep after such a tough time, for you and for Toby. Indulge yourself any time you like, we all have bad times, even rotten times.Take care.
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How wonderful to have a full night’s sleep after such a tough time, for you and for Toby. Indulge yourself any time you like, we all have bad times, even rotten times.Take care.
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I know that noise very well. I don’t think there is anything more annoying especially in the middle of the night.
Glad you found the reason behind it but yes you are correct it does sum autism up very well. The smallest thing can cause such huge problems in a family.
xx
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I find if I write something down I can let go of it. Hope the blog has helped. Make the most of every second of peace. Glad the tooth fairy had a stunt tooth!
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I know what you mean about high pitched noise, or in our house it is just constant noise, all the time, it may be screaming, exicted, whistling, humming, chatter, but it never seems to stop.
At least with Edward he is being worn out by his new school at the moment!
Sending you big hugs 🙂
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The courage (and love) you show in just putting one foot in front of another day after day is beyond my comprehension. I think you, and mothers like you, are awesome, and I mean that in the fullest sense of the word.
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My heart goes out to you Julie – I’m so glad the tooth fairy intervened. Motherhood is hard enough at times even without having to cope with autism so I respect and admire you so much for all you manage to achieve and the kindness and patience you show through your blog. Take care of yourself, Lucy x
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I know Julie, I know… It is sometimes heartbreaking, and very hard to do. Just had the feeling you had a bad week.
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I am grateful and amazed that you share your time and talent through this blog when you already have so much to deal with every day. I’m glad the tooth fairy came to your rescue, and I hope that writing it down has helped at least a little. Hugs!
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….A good nights sleep is a start, but a NEW pair of shoes always cures the blues!
Julie, please take the proceeds of your next shop sale and splurge on a Mummy & Me shopping trip with Amy.
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So sorry it has been a tough week. I truly believe that we are given only as much as we can cope with..and you seem to have plenty to cope with, but somehow seem to get by x I know how hard it is when you feel life is just ‘getting by’though. Weeks can pass at a time with this feeling and then something wonderful and beautiful happens to make all the difference x You are a lovely Mum..don’t forget it in these bleak moments, and remember YOU make a difference to lots of peoples lives EVERY DAY x
So glad you managed to get to the bottom of the latest prob, and hope that you get a clear run for a while so you can turn your attention to all things knitted!
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Oh my goodness, it is amazing how beautifully you write about living with autism! When you wrote about your feelings about your daughter (guilt-free jam) and that feeling of “if I just get through ___, things will be better” it struck such a chord with me! Your writing gracefully expresses my feelings and experiences about my son with autism for the last 18 years and his older sister so poignantly. I hope you’ll continue to write about those times as it really helps others to know we are not alone and you are a shining example for all moms of how to handle challenges with grace.
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julie, i think we all do that – put our expectations in the hands of… something. It can be emotionally dangerous, yes?
poor buddy, i can’t imagine living the way he does, he probably was very confused with that tooth loose – but i’m glad he’s sleeping better – now go take a nap!
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I do not know how you cope. I’m quite sure I couldn’t. You do a fantastic job, Toby is a very lucky boy to have ended up with you (and not someone like me) as his mum.
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I have wanted to comment on this for a long time and now seems right.. whenever I think about artistic inspiration, surprising beauty, “everyday art” – for some reason the post you did with a picture of what Toby made out of your bottles comes to mind. I have no idea but that was so neat to me.. how it resembled the lamp next to it. Such an impressive little sculpture and it comes back to me a lot.
You have lots of hills to climb for sure… but Toby will make sure there are moments of surprising inspiration the whole way.
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My two sons both have Asperger. My youngest hates everything that hurts just a little bit in his mouth. With loose teeth it was a always a problem. It is still a problem when we have to go to the dentist. The pain that we feel can be different in sensation for them. ( I hope I express myself correct, always difficult in another language)
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Sorry it’s been tough, I know how you feel. People say ‘I don’t know how you cope’ but it is a matter of just having to – what’s the alternative! It does make you appreciate the good times however!
When my daughter (who has Down’s) lost her first tooth, I hadn’t thought to tell her what would happen and found her crying in the loo trying to stick it back in……..
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It must be so hard to be unable to ‘make it better’ for him. You are such a great Mum, hope you are getting more sleep. x
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Ahh to sleep through the night wether it’s a new born, a child or menopause–it’s always blissful when it comes. I believe life is all about how we get though the day. Not to sound negative but we’ve all got issues and yes, some more of a challenge then others–it also depends on the day! But keep in mind focusing on our blessings helps get us thorough the worst of days. OH and of course it should go with out saying that we need to take time to replenish our spirits however that may be…knitting, sewing, massage, a cup of tea. We pend our love for you and the tooth fairy!
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I’m chucking at the stunt tooth. Because in the end, it’s often humour that gets us through some of those days.
You have a unique talent for writing about this stuff calmly and compassionately. I watch you Julie and try to learn. Hugs to the ‘gappy gobber’.
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Please feel free to write the bad times too, especially if you find it helps. I find your blog a particular pleasure to read – it is one of only a few that I check daily – and your energy and positivity is always an inspiration. Hope that the better sleep continues.
P.S.Little green Rabbit is still a favourite friend and has had many adventures since she came to live here. Thank you so much.
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I understand the “it will get better when___” all too well. I agree with others that you express living with Autism extremely well. Teething and potty training were some of the hardest things to get through. Sleep and some of the sweet things are what you live for. I wish I could tell you it will get better. In my personal experience it did it just took years to get there.
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Poor little Toby and poor you. Glad he is feeling better. You have the patience of a Saint and like others have said before, Toby and Amy are lucky to have you as their Mum.
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Apart from EVERYTHING ELSE you would be a fantastic mother for this reason alone ……
You kept Amy’s tooth.
The “tooth fairy” always took the teeth with her when she visited this house!
With best wishes for many more peaceful nights for you all x
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Oh what a time of it you’ve all had, and it had to be only over the sake of a poor little loose tooth! Poor little Toby, thankfully the toothfairy did come and take the offending culprit of his angst away and he can rest a little easier( and so can all of you in turn!!) You are a wonderful Mom, very patient and understanding it sounds like to me. Just what Toby needs I’d guess ;)P.S. That’s just darling about the stunt tooth :)!!
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lol at the ‘stunt’ tooth!. being a parent is so hard sometimes, it’s easy to forget when you are little, you live in a little word, and its the little things that affect them the most. i am currently trying my hardest to get inside my youngests head, he’s 2.5 and has been in a bad mood for about, 4 weeks now! am hoping it is a short phase and not the ‘terrible twos’. the first few weeks of school always sends everything topsy turvy too. hope you all get a better nights sleep now his tooth is out : )
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Blogging is not only about the fun stuff, please feel free to share about your life. You are an amazing mother who has to deal with so many difficult issues. I hope Toby will be more at ease now. Only other parents of autistic kids will fully understand what you have to deal with. I can only try.
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Julie, I’d forgotten how exhausting it can be when you have constant struggles to communicate. James, my eldest son, had Down Syndrome and his speech never developed to a stage where it was easy to understand. Sometimes you feel as if you spend your whole life trying to guess what your child’s needs are. And when they are clearly distressed about something it becomes really stressful. I’m glad for all of you that the tooth is out!!
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Hi I thinks its ok to feel like you do. I do not know what it is like to live with autism but I know what it’s like to get no sleep with children and that is hard. Try to keep sight of all the good things about Toby, I’m sure there are many. My little boy lost both front teeth after a crash with his sister on the trampoline this summer – saved a lot of wobbling!!!
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I’m so glad that you do share these moments with us Julie – sometimes, when I can’t get my head around my life it is really helpful to read about other peoples lives. I choose to read your blog because of this. And your knitting is fab too! Steal some magic me time moments when you can..
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I’ve always tried to take the “life of Brian” view when things have gone bad you know, “always look on the bright side of life d’na d’na d’na d’na”. So with that in mind, and that song for the rest of the day!
A) You will never forget the day Toby lost his first tooth.
B) You will now be on the lookout for more wobblers.
C) He’s got the cutest toothless smile 😉
So lets all sing together …
“If life seems jolly rotten
There’s something you’ve forgotten
And that’s to laugh and smile and dance and sing.
When you’re feeling in the dumps
Don’t be silly chumps
Just purse your lips and whistle – that’s the thing.
And…always look on the bright side of life…
Always look on the light side of life… “
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It truly is the little things to be grateful for in a home with Autism. I’m so glad to hear things are better!
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Take care. You all are in my thoughts and prayers.
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You know when things get bad I always take the “life of Brian” attitude and look on the bright side. So what do we have to work with:- ok so you wont ever forget when Toby lost his first tooth, he now has a lovely toothless grin and finally you can now be on the lookout for the next wobble. So with that all said and done …
If life seems jolly rotten
There’s something you’ve forgotten
And that’s to laugh and smile and dance and sing.
When you’re feeling in the dumps
Don’t be silly chumps
Just purse your lips and whistle – that’s the thing.
And…always look on the bright side of life…
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OH I thought I had lost the last post, lol now you have it twice, ooooops
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You did make me laugh with the stunt tooth, that is the beauty of your blog even when things are obviously tough for you, your positivity, and a joy of life shines through your writing.
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You did make me laugh with the stunt tooth, that is the beauty of your blog even when things are obviously tough for you, your positivity, and a joy of life shines through your writing.
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You did make me laugh with the stunt tooth, that is the beauty of your blog even when things are obviously tough for you, your positivity, and a joy of life shines through your writing.
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You did make me laugh with the stunt tooth, that is the beauty of your blog even when things are obviously tough for you, your positivity, and a joy of life shines through your writing.
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You did make me laugh with the stunt tooth, that is the beauty of your blog even when things are obviously tough for you, your positivity, and a joy of life shines through your writing.
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You did make me laugh with the stunt tooth, that is the beauty of your blog even when things are obviously tough for you, your positivity, and a joy of life shines through your writing.
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You did make me laugh with the stunt tooth, that is the beauty of your blog even when things are obviously tough for you, your positivity, and a joy of life shines through your writing.
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You did make me laugh with the stunt tooth, that is the beauty of your blog even when things are obviously tough for you, your positivity, and a joy of life shines through your writing.
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You did make me laugh with the stunt tooth, that is the beauty of your blog even when things are obviously tough for you, your positivity, and a joy of life shines through your writing.
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What a beautifully written post. Please feel free to talk about Toby any time. I work with children diagnosed with ED and I am sooo tired after school. I can only imagine how tired you must be. I would babysit if I lived near you! Mothers of children with Autism should receive a yearly allotment of spa days and hotel naps!
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Very pleased to hear that Toby is feeling better and that you all had a peaceful night (and we all understand how precious those are!)
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After such a stressful period, finding that wiggly tooth must have been such a relief. Let’s hear it for being able to sleep through the night (and for Mums with stunt teeth handy)! Best wishes to you.
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Hi Julie
A severely autistic kid is hard work isn’t it. My eldest daughter is the same as your Toby and I have forgotten a lot as she is now in a group home. Unless you live it , people have not got the slightest idea of how hard it is. Having an ear infection when my daughter was about 13 or 14 was one of the lowest points of my time with her. I did not know and I was seriously thinking of murdering her as she was driving us both nuts as we were sleep deprived until the poor kids’ ear drum ruptured. Then at least we knew what her problem had been
Karnak
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I just have to say I enjoyed reading your post about your son and loosing his first tooth. I have just started learning how to work with and teach autistic children. Reading post such as this give me a bit more insight in to the lives of these amazing children and their families. Keep opening up your world to us. It helps!
Thankyou
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