Thanks to everyone who has emailed me recently. I am really behind with emails and so hope you'll forgive me if I've not replied yet. A few people have asked about how things are with Toby but there's nothing really to say at the moment. Things are the same with lack of sleep and frequent meltdowns day and night and lots of self harming, mostly hand biting.
We're still waiting for paperwork to be processed on some kind of respite and for further meetings but everything takes so long as it's bound in reams of red tape and procedure, which isn't a lot of help when you're out of energy for chasing and making a nuisance of yourself. We've had a recent meeting with the educational psychologist and Toby has been referred to the challenging behaviour unit and the occupational therapist for sensory assessment. All of which is potentially helpful in the future but not of immediate aid.
Will pop back later with a nicer post of knitted animals after I've been to the mother's day assembly at Amy's school.
little cotton rabbits 
Now that I read your comment I remember that both my boys ( Asperger and PDDNOS) have had those problems. They have grown over it, but I felt very helpless at moments they hurt themselves.
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Oh dear, poor Toby. it must be so frustrating and tiring for you all. Thinking of you x
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Hoping for the red tape to untangle and speed the process upxx
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Just want to say…..big hugs. Really hope the help your asking for comes to you very soon.
A x
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Keeping your family in my thoughts and prayers.
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Oh lovely that is so tricksy. I would love to ride up there on my white charger and be your personal ‘shouter-atterer’ and ‘red-tape shredderer’.
May your time at this afternoon’s assembly be some small respite.
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There is not a day I don’t think about you….I have been through a very difficult time in my own life as well…keep knitting…try to do something nice for yourself when you can…it’s not selfish, it’s preservation….lots of people are sending you caring thoughts and prayers…
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I think of you often. I hope that you get the support that you need for Toby. This has got to be so hard for all of you. ((hugs))
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When you talk about energy I thought of how I sometimes feel a little guilty about how I SHOULD be campaigning for Autism Awareness/healthcare bills/more services for my son on a state and national level. And I just can’t. He’s all I can take care of. Autism is draining. I hope things get a little easier for you soon.
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Not an easy time for you. Keeping you all in my prayers.
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Keeping you in my prayers and hoping for respite soon. Lisa L.
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Rachel says that she believes all of us are somewhere on the autism scale. That it’s a human state, and we all carry some characteristics to some degree. I think it’s interesting, and also something of note, that when he has the meltdowns, he ultimately turns the harm on himself rather than someone else. I don’t pretend to understand the situation as it unfolds in real time, but I do find that – hopeful, in a strange way. I also find hope in what Annalies had to say. And it seems that the Heavens are mightily troubled with your name these days – so many praying.
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Hi Julie,
I’m sure you’ve investigated the help that can be given by the use of Erlin filters for children who are autistic and distressed by sensory overload, but I thought I’d bring your attention to them just in case you hadn’t. I hope you don’t find this suggestion intrusive, I intend it only to offer support.
I hope this is of help to you.
Kind Regards
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Let’s hope the red tape part is over shortly and you can get the help you need – it’s always so frustrating getting these things put into place. Keep your spirits up, at least it is in motion! (Laughs hollowly as I’ve ‘been there, done that’!)
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hope everything gets sorted soon Julie – thinking of you x
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Sorry to hear about Toby’s self harming – I had no idea. I really hope that you get the support and help that you deserve and that things work out for you all.
Love Zoe x
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I just want to say that I do hope everything is settled for you very soon. I hope that your mother’s day is restful and calm. You are a really wonderful person.
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I’m sorry, Julie. It seems that every time my Olive eases up on a particular behavior, she replaces it with a new one. And sometimes when a particular behavior reaches a fever pitch, that means it’s on its way toward replacement.
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I feel so bad for you all. I pray you will be given the strength to endure and overcome this stressful time, and that your family will grow closer and support each other. Love and best wishes to each of you.
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I love your blog and follow regularly (I sent Amy badges from Canada when she was in Brownies). I just wanted to say keep at it with the paperwork etc for respite and assistance for Toby. I have a friend who finally got her boys assessed (multitude of issues) and has some regular respite, she says it has changed her life just having that regular break and time to do something for herself. I think you are amazing and an incredible parent, I’m sure there are days when you don’t think that about yourself but all we can do is our best and love our children and you do that in spades. ♥ Margaret.
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(((HUGS ELEVENTY-BILLION))))
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I dont know if you have heard or seen Dr. Greenspan and ICDL. You can look it up online. I remember one part of a training I took and that the self harming was on a level an attention seeking behavior. I dont mean that he does it on purpose like other children, but he explains and shows how to “retrain” child and lessen the self harming.
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Sending blessings to you and yours xx
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Oh I do hope they can start moving things along more quickly. So frustrating. Thinking of you. K x
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Thinking of you Julie and hoping things soon get un-red-taped! Lucy xxx
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Thinking of you and wishing the best for Toby.
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Makes me think about everyone who has a child with Autism and count my blessings. Stay strong; you are doing an amazing job. Best wishes to you all. Maureen
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Oh the slow speed when you’re in need of help … so hard to cope with. Hope you and Toby can hang on in there.
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Recognize those teethmarks. (((Hugs)))
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Hi,
I have been following your blog for a while now but have never commented on any posts before. I thought now might be a good time to let you know that you are not the only one experiencing meltdowns with your child. I have a 13 year old son with sensory issues, autism as well as cerebral palsy. For the past couple of years, he has had our family feeling like we are on the edge of a cliff all of the time waiting for the meltdown we knew was coming day or night to push us over the cliff edge. It is very difficult to live like this not knowing how to help him. He could have 7 or more huge meltdowns a day with him trying to bite or hit us or biting his own hand or shirtsleeve. Because he is in a wheelchair we could avoid most of this. Fortunately, his doctors finally listened to our pleas for help and prescribed medication for him as well as seeing an OT for sensory issues. We put ear protection on him to block out any loud sounds for him and the OT gave him chewelery to chew on – these things helped. The medication made a HUGE difference in him – he still has a meltdown sometimes if our computer freezes – but the medication dampens him without making him a zombie. He sleeps through the night now which is something he hasn’t done in his entire life. I also feel that the medication has “lifted the fog” to allow him to learn new things instead of always melting. Our family life is soooo much better now.
I am hoping that by sharing a bit that it may help you and your family in some way since I have been in a similar spot.
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Praying for you.
I check your etsy every day for a bunny for my little honey. My Dad is going thru a cancer treatment and my daughter is so worried. She is not sleeping. Im hoping for a bunny soon and they I see how difficult life is for others and feel terrible that I was even looking.
Be well.
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And why pray tell? Why do we have to work and fight so hard for our special kids? It is SO exhausting taking care of them and then to have to fight every step of the way for help, programs, supplies, etc. It just boils my blood. I tell you what. There is something seriously wrong with our society in my opinion. Big soap box I could climb up on but I won’t. 🙂 I just keep hoping and praying that you recieve the help you and Toby need ASAP! My heart goes out to you……. Here’s a hug from Utah, USA.
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Oh dear. I got tears in my eyes reading this. Hope things speed up for you. HUG.
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Oh poor Toby! Sending you support and prayers from the States. Your writing, knitting and general goodness inspire us all. We are rooting for you!
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Tough times. Hoping for a big pair of scissors coming your way, a.s.a.p., to cut through the tape. Love and prayers. Jenni
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Sorry to hear about Toby I cannot begin to imagine what it must be like for you and how strong you have to be to get through it.
Thinking of you 🙂
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On TV there was a show called “Pick a Puppy”. The parents were looking for a puppy for their autistic child. They wanted a dog that totally adored, and was committed to, their little boy. I think they found a puppy who wouldn’t leave the little boys side, and he calmed down quite a bit. Does Toby like dogs?
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Hope it gets better for Toby and your family, I’ll be praying for your family.
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Dogs do work miracles…I feel your angst. Wishing you energy, clarity and hope. As we travel through these things, we seem to lose a bit of ourselves. May things change for the better, small gains, and create a better space for all concerned. My oldest son just had a major mental health breakdown, in which at times, I thought I would lose him. This past February we finished a lovely old farmhouse, 10 minutes from us, and moved him, his younger brother and a friend in. He is so much improved. I will never forget how long it took to untangle the red tape. My thoughts and prayers are with you. Small gains, and hope.
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Hi Julie –
Checking your site and admiring all
your work, as usual….Would love to have
one of your beautiful bunnies – I particularly love bunnies number 7 and number l….How would I go about ordering
from you?? Is there a waiting list and, if
so, how can I get on it???
My heart goes out to you and your family.
We live in the states and struggled with
our very angry, aggressive,defiant son/brother for years….After much
intervention, our prayers have been answered
and he has been placed in a residential
school which is very structured and strict.
We are praying that the one year program
will work miracles for him!!!! The waiting
to get our children the help they need is
exhausting, but I pray it will happen for
you soon….I can tell your a mum that goes
over and above for her children, so blessings will come your way….God’s timing
isn’t our timing….
Thank you so much for your wonderful
blog…The beautiful colors you use in
your creations are enough to cheer us on
a blue day…..Blessings….Barbara
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I would just like to suggest that you consider changing his diet. My grandsons are on a gluten/caesin free diet and this is really making a difference for them. Hope this helps!
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I am in tears, this post ripped at my heart…
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Have you tried homeopathy for your son – it can make a real difference to some of the behaviour you describe – also a particular methodology has been focusing on Autism using homeopathy alongside other elements of treatment – see the website I have listed for CEASE therapy.
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Hi Julie-
My daughter in law works with autistic people. Here are some remarks from them about hand biting:
I’m 38 and I still do this when I’m really stressed out to the point of being angry. I actually did it just yesterday in the bookstore after I had to ask a bookseller to please stop chasing me around the store with book suggestions because it was overwhelming me (I was very polite, but it stressed me out a bunch). I suppose it’s a combination of being hard on myself and not wanting to flip out in public because of the social ramifications for doing so. As long it’s not causing long term damage (and in his mind it’s probably causing less damage than the alternative of flipping out), what’s the harm? Over time, he’ll learn to control it and/or hide it better
I did that too when I was about the same age as a response to overwhelming situations. It was kind of a stim and kind of an anxiety release. I never drew blood but got some interesting bruises (amazing how teachers never really commented on the bruising…).
Anyway, I replaced it with other stims when I got older and that is about the only advice I can give on stopping it; the truth it without extraordinary intervention–restraints–stopping really will not happen and I agree with a previous poster that unless the child is drawing blood/seriously hurting himself then you probably should not stop it.
my cousin bit his fist when he was a kid. He told me that he bit his fist because he was angry.
why do you think he needs to stop doing that; is he biting untill it bleeds?
It may be that he is biting his hand to relax a little, i used to to something simular (though for me, it was chewing on my pinks).
it might seem weird, but the sensation you get from biting yourself can overrule nearly and other input signal, including the ones that are bothering you; kind of like the joke in which you hit your left hand with a sledgehammer so you dont feel the pain of just having yourself hit on the thumb of your right hand, but less extreme.
Maybe he’s really hard on himself and this is a way that he self punishes.
i think that, if it is just biting forcefully, but not damaging on his hand, you could be better off not trying to stop him, it could be replaced by another self-harm method that does leave marks (extreme example; cutting yourself).a better way would be to find out what makes him bite, there is probably something in the area that bothers him (like the ticking of the clock, or the buzzing of a TV on standby). removing that should also stop him hurting himself.as for why that place on his hand; probably it is the most sensitive to pain from the places he could easily reach…
II had the same habit for a while during my 20s (!). I would bite the skin on the side of my hand to the point that it became calloused.
It did seem to be something I did as a result of stress, just the general energy drain from being around other people. I think the idea of it being a way to focus on one sensation in order to screen out others sounds like it makes sense. It is a sort of pain that feels good, though I’m not sure why. It also became more of a self-reinforcing habit when the skin of my hand became irritated and itchy.
I know someone who bites their index finger, they do it out of frustration and the area between the index finger and thumb can be pinched to stop pain, mainly for migraines.
I do that sometimes. It’s not a big deal. Usually I do it to deal with mental confusion, usually overload of some type. I don’t bother about it because it’s not causing injury, and if it’s not causing injury, why worry? (Well, with the possible exception of biting one’s hands when they are dirty and exposing oneself to bacteria; but I keep my hands quite clean.)
If the kid’s not breaking the skin or causing other similar problems, I wouldn’t worry about it. If he is, tell your friend to try a chewy thing (they’re “therapeutic”, often used by speech and occupational therapists) that he can chew on instead; that may be a possibility if he wants to chew on something. On the other hand, if he wants to specifically chew on his hand, then that might be another problem–again, fidgety things, stress ball, play-doh, whatever. It doesn’t have to be outright eliminated to stop any possible injury; teeth are pretty blunt, so it should serve his purposes if he can find a way to just stop doing it so often, so he isn’t hurting himself.
If you want to redirect a stim, the best way to do it is figure out why you do it–what purpose it serves for you–and find another thing you can do that serves the same purpose. Only really worth it if it’s hurting you, distracting you, distracting others, or just taking up way too much time–stimming in and of itself is harmless; we all do it, though autistics do so much more intense
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