My
9-year old son won't go upstairs on his own, even at home. He follows
me to the back door if I go into the garden. I used to think he was
just being difficult and annoying, but now I know that children with
Asperger's or Autism are often anxious. He tells me that he feels lonely and
afraid, not that I'll leave him, but of monsters and bogeymen and other
vague fears that he cannot put into words.
CD
needs help in so many areas: with handwriting, social skills, sensory
difficulties, but the two that worry me the most right now are anxiety
and anger. And they seem to be related. After meltdown month, I
persuaded the local services that my son needed help urgently, and so we
are now in the system. Not a lot has happened yet... a meeting with a
senior registrar, some forms to complete, and then I was sent an
invitation to a workshop on anxiety. It's rude not to accept help when it is offered, so I went, even though I wasn't expecting much. And,
well, how wrong can you be?
There was lots of useful information about anxiety, and I came home with the tools to develop a plan that I hope will help. I now realise that CD's meltdowns are usually about something that has been brewing for some time. He will
have complained about it, but he complains about lots of things. So I need to listen more carefully to
his concerns in future and ask the school to do the same. That's preventative measure number one.
We were also told that children can be taught to calm
themselves down, and that you should work on this every day. Four types of activities were mentioned that calm children down and organise their sensory system - not sure what that means, but it was on the handout, which will get a gold frame if it works!
I have to be realistic about what I can
manage right now. So this is it...
My Anxiety KISS* List
Listen: I am going to do this.
Predictability: All upcoming outings and activities to be posted on his 'Wolf' Calendar.
Exercise: Bouncing on the trampoline, extra-curricular activities (Judo starts
today), pushing Smiley, and a personal trainer (Angel): am hoping this will further improve
their relationship as well :)
Deep pressure: I used to think that CD was weird when he asked me to sit on him. Now I understand.
Slow Rhythmical Movement: Rocking chair and therapy ball...
Chill Out Zone: He has his den.
Choice: I do this already - he even helped choose his new school - but I will try and add more choices.
Social
Stories: I still don't quite understand these, *sighs*, and the thought
of writing them is a bit scary. But apparently they can be downloaded
from the internet. And I already have one idea. Now I just need to
know how to use them effectively: what time of the day? How many times
to read them? Somehow I don't see our current bed-time story being replaced by a social story.
Meltdown strategy: Need to work on this one and have a plan ready.
Time to press print....
I would love some feedback on this!
Always be watching and take notes after spending time together if you can. One of the best skills you can hone for working with kids on the spectrum is observation. What was going on before the meltdown? After? What other "odd" self- soothing strategies might be flying under your radar besides the need for pressure? Our kids tell us about their fears, their cravings, and their pleasures in many ways -- but not in words. Good luck!
ReplyDeleteThat looks great Candi :-)
ReplyDeleteYeah, I haven't quite got to grips with social stories either (although it's been on my to-do list for, um, 2 years *blush*) so can't advise there. Carol Gray has a book, but it's £££ and the library don't have it.
Meltdown strategy.. This is my New Thing: I have managed to pre-empt a few with Róisín recently by 'love-bombing' her when I can see her starting to get stressy. This takes a bit of effort on my part, because the last thing I feel like doing when someone is being arsey to me is giving them a squeezy hug, talking gently to them and putting off everything else to give my undivided attention!! But, dammit it, it works!
I doubt it will work for everyone, or work for us everytime either, but it's worth a try :-)
I've been using social stories a lot in the last year. At first they were mostly pictures, as Max couldn't read. But now he reads I do sort of cartoon strips. They're always about situations he actually finds himself in, and the drawings pick out (very simplified) familiar things. He very quickly learned to figure which of my inadequate pictures stood for what or whom, and he started using them in his own social stories (he once drew one to try and persuade his father to take him to the pool!) We read them to him at times when he seems likely to become anxious, to prepare him for things (like travel), or when he has a particular problem (at the moment it's singing loudly in class and spelling out words loud during dictation). But also, I tend to leave them lying around so he can pick them up and read them (they're on A4 laminated paper). Hope this is helpful.
ReplyDeleteJust found your blog via Mammy Dolittle and its a great help. Just had a parents evening where a few teachers pickded up on my son's very mild traits of aspergers and now we are having to do something about it, which he's not happy about. He's 12 and in year 8 but it does affect him too much socially but is now a problem at school with work etc. Loving your strategies and will be following with interest.
ReplyDelete@Susan Walton - thank you for some very useful comments..I especially like the idea of writing everything down.
ReplyDelete@Sarah Jane - hello and thanks for stopping by here :) I was trying to say that I mean to notice and listen more..I have to put together a specific plan for meltdowns, because of course I can't just leave Smiley as she needs continuous attention at times as well!
@Sandrine - thanks for dropping by. My son more or less refuses to read *more sighing* but is very capable, so I'd say I'll have to read them to him. How and when I haven't quite figured out yet.
@mum in meltdown - best of luck with your son: some of the other blogs in my sidebar might be of interest as well...I'm a newbie at all this x
Keeping anxiety arousal low is my aim too. Active listening. Looking at sensory diets is very usuful.Sounds like you have a good plan there.
ReplyDeleteHope all goes well :)
Sounds like a great plan Blue Sky. Definitely write down his concerns. When they talk a lot it's easy for us to forget half of what they say! Anxiety is a huge difficulty for them. I remember being shocked when a Play Therapist told me that, at age 3 and a half, WiiBoy was very anxious. So sad to think of them being so anxious when they're so little :-(
ReplyDeleteSocial stories are easy enough... once you do one you'll be flying! I found they were easier to do yourself because then you can really tailor make them to your child and the issue at hand. Use positive language and limit the words. One or two sentences per picture. If I can I'll email you the one I did on bowling if it will help? May give you a starting point if nothing else! WiiBoy too old for them now I think yet, still I get.... 'Mum, what's happening next? Every day!
xx Jazzy
We do have to listen to them but it can be so hard sometimes when they repeat something they told you six months ago. Amy tells me stories that happened years ago and is always asking me "why did you say that?" I have to sit and think and try my best to recollect the incident she's talking about. It astounds me every day how incredible her memory is.
ReplyDeleteCJ xx
So many exgtra things you have to think about, it's quite staggering as someone with no experience or real knowledge of this aside from the brief and inadequate training I've had as a teacher. The list sounds like a great idea and although I can't add anything at all of use like the mums here I just wanted to say that I hope it helps. Glad that getting yourselves into the system seems to having quick benefits x
ReplyDeletewow, just straight up 'hats off' to u lady...must be very intense, you seem to be doing everything perfectly, have no idea how i'd cope. i think you're fantastic.
ReplyDeletealso all these ideas are great and very helpful for all kids, so will practice on mine too....!
lol, tamsyn xxx
Hi there. Your list sounds really good and I hope it starts to work for you. We also have had massive anxiety issues with both my children, particularly my son. Definitely agree with you about predictability - we have to plan well in advance of doing anything and sometimes do a visual timetable - it has worked quite well for us. I have also found our trampoline brilliant for easing stress and also deep pressure, my son loves being wrapped up in a rug and us rolling him along the floor (his head is popped out the one end so he can breath - its quite funny). With my daughter she gets a lot of anxiety in the evening so I use lavender scented baths and those warm lavender pillows in her bed - has helped her. Re meltdowns have you looked at the 1-5 anger scale - we did something similar and it really helped us to identify signs of an impending meltdown & possible triggers. However, I have to admit to not getting on with social stories. All the best. x
ReplyDelete@Casdok - sensory diets is something I haven't looked at, thank you x
ReplyDelete@Jazzy - I can imagine that it must have been upsetting to hear that Wiiboy was anxious when so young. And yes I'd love to see one of your social stories :) I think CD maybe too old for 'picture stories'. I was thinking of doing one more as a personalised step-by-step set of instructions, as you'd do to explain how to something on the computer xx
@Crystal Jigsaw - you know my boy is exactly the same, he has an amazing memory xx
@Mammy Beadzoid - thanks for commenting, would love to know if you've come across children with Asperger's during your teaching x
@Manic Mum - I often think that too and practice on my 18 year old, she doesn't seem to mind x
@Aspie in the Family - Thanks so much for your comments...I find it really helps to keep sharing all the things that work x
Really interesting post Cathy. Obviously not got any experience first hand myself but my sister looks after children within the autism spectrum as part of respite care for parents. I'm often talking to her about these sorts of posts - and great comments too x
ReplyDelete@SAHMlovingit - I'm always amazed how many people are touched by special needs in some way and you'd never know it! Thanks for dropping by again x
ReplyDeleteI think your KISS list is brilliant. You have the makings of a 'sensory diet' with the exercise, deep pressure and slow rhythmical movements. More is not necessarily better in a sensory diet - give him the choice(s). On breathing - search for yoga special needs or perhaps some audio-directed yoga.
ReplyDeleteBarbara
@Barbara - thank you so much, I always really appreciate your advice when I do a post like this :)
ReplyDeleteI am so happy to see this post. Wait, that sounds wrong...I mean, I am so happy I am not alone with anxiety issues. In fact, that is a huge reason I haven't been by to visit in so long and am posting only once a week myself. Jaylen's anxiety has taken an extreme turn. I am just beside myself right now.
ReplyDeleteI love your list and took notes of things I want to remember to try too!
I know TONS about social stories. We recently got very into them. I highly, highly recommend buying Carol Gray's New Book of Social Stories. It has many stories for typically situations already typed up with pictures. Then, if you need or want to make one more personally, just use those and tailor them for your son. Add his name, his picture, and his needs at that time. They have really helped us. Here is a link to the book, let me know if you don't get it. http://www.amazon.com/gp/product/1935274058/
@MommyToTwoBoys - So sorry to hear about Jaylen's anxiety and I know how you are feeling - my new programme has only started and I'm being tested to the limit this weekend. Thanks also for the book suggestions and sending lots of ((hugs))your way xx
ReplyDeleteYour list looks great. I know how you feel - we have a huge list of stuff that we need to do with Nipper, it's overwhelming sometimes. Occupational Therapy gave me several sheets of exercises for Nipper - very similar to the items on your list. They explained to me that the feedback that Nipper's brain gets from these exercises acts as a 'dampening' mechanism on anxiety signals being sent to his brain. It also helps him to focus and concentrate better.
ReplyDeleteI have a book by Carol Gray which gives examples of Social Stories, cost about £10 from Amazon. I haven't got as far as actually writing my own but it's something I really need to get on with. The Speech Therapist gave me a sheet of notes on writing social stories - I'd be happy to make a copy and post to you if you want it. Just let me know.
Tilly
(http://non-neurotypicalnipper.blogspot.com)