Albert Einstein once said
"Insanity is doing the same thing over and over again and expecting different results".
And as he was quite a brainy chap it seems sensible to heed his advice, so we're changing tactics with Toby in an attempt to get a different result to all of the tantrums of recent times.
I believe that communication is the key to helping Toby manage his rages. Communication from us to tell him what is happening next, what is expected of him and what to expect of a situation and communication (in a more appropriate form than tantrums and biting) from him to convey how he's feeling and what he's thinking.
We don't know if he'll ever learn to speak and so it's essential to provide him with an alternative and P.E.C.S (Picture Exchange Communication System)is definitely it. I've mentioned before that we've found P.E.C.S invaluable as it's given Toby a way of communicating his wants and needs (food, dvds, play etc) but it's proving hard to move it on to a fully functional language for him. For instance how do you teach a non-communicative child the word for headache? I know sometimes that he's in pain but I cannot tell where it hurts and he has no way of telling me yet. It's a catch-22 situation sometimes but I suppose the only way forward is to start small.
So we've introduced a timetable at home which sets out Toby's day, where he's going and what he's doing.
I hope it will help him on inset days and school breaks when he'll have a visual clue that the routine is different and hopefully the reassurance of seeing that later in the day we're going out etc.
They are small and simple steps but I hope it will lead to him being able to express himself more fully and reduce the levels of frustration that have led to his recent agression. If you're interested I'll keep you posted on our progress!
little cotton rabbits 
Hi Julie,
That sounds like a good idea and i really hope you get some positive results, because you really deserve to. Anything is worth a try. I will look out for your posts on how you are getting on. Best of luck and i will be thinking about you.I always read your posts anyway, i love them. Take care
Love Carole from Rossendale xxxx
LikeLike
I know nothing of what you’re facing but this sounds like a good idea to me – and if old techniques aren’t working, then it’s got to be worth a try
Good luck x
LikeLike
That really sounds like a good idea Julie, like you say, Toby will be able to see “whats coming” for the day ahead and hopefully that will make life a little easier for you. I wonder whether he will change the order of things around if he isn’t happy with them? I am sure I speak for everyone when I say that we love to read your posts and to know how you are getting on, not only with your wonderful knitting but with life in general – we may not be able to support you in a practical way, but we are there for you!
Rosy xx
LikeLike
That sounds and looks like an excellent way to change things up….you will never know unless you try. When it succeeds then you will have one more idea to pass along…. where would we all be without someone before us experiencing what we all go through.
Won’t it be wonderful if it does work? Keep us posted…..I will share them with my daughter.
Hugs,
Margaret B
LikeLike
Julie:
Have you thought of teaching him sign language? Kids with autistim respond and reacts better when they know sign language. I have a friend who is a nurse and has an autistic son and he signs when he wants something like milk cookies etc. There is a wonderful dvd he might enjoy… Check out this link…
http://www.signingtime.com/
Hope this helps…
LikeLike
I would definitely be interested to hear more about how this goes. I do research with adults with learning disabilities and so am always interested in learning about new ways of communicating. It is acknowledged that people with limited language are often overlooked simply because it is thought too difficult to try and obtain their views. Good luck to you and Toby and I look forward to hearing how it goes.
LikeLike
We did a session on visual aids at the autism support group I attend. I am lucky that my two are verbal but they are sometimes beyond being able to speak when a meltdown happens. I am watching closely to see how it pans out for you and hope to pick up some tips along the way as the tantrums and violence are becoming a massive issue here. It will be trial and error for you so hang in there. I have heard fantastic stories of success using visuals.
LikeLike
I hope this works well for you and Toby. It certainly sounds like a good idea. I wish you all the best of luck.
LikeLike
I am so pleased you are using visuals & really hope it helps. I know nothing about Toby but would advise using things that are concrete to him eg objects and photos too, depending what level he is at. Talk to his teacher about teacch (I have spelt that correctly!)
Chris x
LikeLike
Wishing this works for the family.
I know that visual, at times, is the best way for issues like this. I have a very close friend whose daughter has the same issues and this works wonders for them. Her daughter is all about visual communication. See sees her entire world thru her eyes and is the only way she can communicate. Best of luck.
LikeLike
Reading all the above posts I am so heartened Julie at how wonderful and supportive people who follow blogs are, people you have never or may never meet. I hope some of the advice given helps and that the visuals meet Toby’s needs as a way of communication. Am eager to hear how things go.xx
LikeLike
I’ve heard that this works brilliantly and for the long run. I hope you all and Toby are able to rely on this system to help him feel more comfortable. Parenting in general seems to be about switching up the tactics once in a while! Wishing you the best.
LikeLike
I’m hoping this works well for you., I have children that can talk and communication is still very hard sometimes.
I did think as your communication is mostly visual it maybe worth letting him try using a camera, then he can photograph some of the places he goes to.
Goof luck.
Amanda.x.
LikeLike
I wish you all the best of luck with trying to find a way to communicate with Toby. It’s hard enough when a child is talking and still learning the language. I can’t begin to imagine the difficulty and frustration you must feel when trying to figure out how Toby is feeling.
I’d love to hear how this new route works and how Toby responds. Good luck.
LikeLike
In my past career found this worked. Every one can use it to signpost with Toby what’s next. I agree the camera is a very useful tool for Toby to show what he likes (and doesn’t like) Much love.x
LikeLike
The timetable at home sounds like a very good idea – I have found that sudden unexpected change very often brings on behavioural problems, although in my daughter’s case it was complete shut-down rather than tantrums.
With regards to communication, have you tried Makaton? It is a very literal sign language where the signs look like what they are supposed to represent as opposed to the sign language used for deaf people. In my job I have found it really helps not just children with Down’s that I work with but other children who have difficulty communicating.
Also, for when a child is not feeling well, I had a laminated drawing of a ginger-bread style person with a ‘sick’ looking face and the words ‘I feel poorly here…’ at the top. All the child had to do was point to where it hurt – perhaps that might help? If a drawing is too abstract a concept, perhaps a photo of Toby?
LikeLike
I’d love to know how it goes
LikeLike
I have no experience with autism but send you heartfelt best wishes that your new system will help. I agree that communication is always key especially with children and I’m sure Toby is no exception.
Pen x
LikeLike
Visual timetables are often really useful with children with communication difficulties – to establish routines, and as a good, visual starting point for talking about any changes to routine. I’m sure this will help. I’m surprised they haven’t used this at school before – or perhaps they have and its just that you’re now extending it to home. If the child is amenable, you can take photos of them doing parts of routines (cleaning teeth, brushing hair) etc., to make it more personal. Best of luck!
LikeLike
Wishing you lots of luck and really hope it helps Toby and you all to cope better.
LikeLike
Seems like a fantastic idea. K x
LikeLike
We used PECS at school with really positive results. I do hope it makes a difference to all of your day to day lives. We used to carry a selection on a keyring on our belts too to use in ’emergencies’.
LikeLike
Hi Julie
Well it certainly sounds like a fantstic idea and I sincerly hope it really works for Toby and of course you and all the family.
There seems to be lots of positive response to the idea from the comments you’ve already received. I suppose it’s just a matter of trial and error until you find the right solution. Let’s hope this is it!
Take care and please let us know how you get on!
Vivienne x
LikeLike
I think the timetable sounds like a good idea. Let’s hope that it does the trick and Toby manages to understand how his day is going to pan out so that he’s less anxious when his routine is changed. Sending you lots of good wishes.
LikeLike
It sounds like a good system 🙂 I assume that Toby knows/remembers his normal daily routine and so, when it unexpectedly changes, he finds it stressful/frustrating. I suppose my question is… will he remember the visual timetable later on in the day when the routine changes, or would it help if he had a similar small (pocket) daily routine which he can check and/or be reminded of todays timetable?
LikeLike
Do hope it works.You must get so frustrated not being able to communicate.Keep us posted.
LikeLike
I’ve used PECS as well.
I found it useful to add “Free Play 30 mins” so that Logan could choose to do whatever he wanted. Knowing it would last until the timer went off. (I did find the timer in the garbage on a few occasions)
I also added “?” because life is full of surprises.
LikeLike
We have some friends that use the same thing. It’s proven to be great for helping to structure his day in a way that he knows what’s going on at a glance! No surprises or changes of plans for them means that things run much more smoothly. Good luck! You do an amazing job.
LikeLike
I have no helpful comments but just wanted to wish you luck and say that I am sending good thoughts your way. x
LikeLike
This is similar to the system that my daughter’s students have responded so favorably to. Genius!
LikeLike
HA! My husband has that same Einstein quote as part of his email signature. Made me chuckle. A change in tactic sounds like an excellent plan. Good luck in obtaining some good changes.
LikeLike
I wanted to let you know that I think your tactic is great! I am a special education teacher and I am currently getting my Behavior Analyst Board Certification through a program focused on Autism. I wanted to recommend Social Stories to help bridge some of the gaps. You can google it. I also wanted to recommend a star or a another symbol that signals a change in the regular routine. Here is where a social story can teach Toby that change is ok. I hope that this change helps and I have to say it is always a mystery when kiddos decide to communicate but I think it is great you are willing to communicate in Toby’s way before expecting him to communicate in your way!
God bless, Good luck!
LikeLike
I like that plan even for myself! We are all creatures of habit and when things get bumped around or moved we all tend to act out – get cranky, moody, anxious, etc. Your days are certainly challenging but thankful that knitting is a spot of happiness and peace for you! I know it is for me. God bless and I will pray for you and your family. Carol
LikeLike
That seems like a very good and well thought out plan of action. I really it hope it works. I can’t imagine how hard it must be for everybody when Toby cannot communicate things very easily.
I enjoy reading your blog and wish you every success with this new tactic.
Best wishes, Bernice x
LikeLike
Brilliant! A very positive decision to make and take. I sincerely hope it pays off for both you and Toby. Don’t totally agree with Einstein’s theory as, although there is an element of logic to what he says, it is not always the case. Some things are just a case of perserverance while the message slowly trickles through – if at first you don’t succeed – try try again.
LikeLike
I read your post yesterday (11/15) and then that very evening saw these “Feelings Flash Cards” in a catalog. I immediately thought of you and thought I’d let you know about them. http://www.uncommongoods.com/product/feelings-flashcards
Good luck with your new tactics. I hope they help!
Vickie
LikeLike
Hi Julie
Would love to know how things go with Toby, whether it serves to remind me not to be so hard on hubby (still unwell but slowly improving) – it all seems so insignificant to what you go through or just to hear what tacts you use it is a joy to see how well you work to improve your family life and I know from your previous posts that it may not always be so but up till ‘whenever’ you have and still do such a fantastic job – still my Superwoman!
Davina xx
LikeLike
What a wonderful invention PEC’s is!! It’s the ideal answer for children with autism who need structure in their lives. I’ve used it with several children in my classes. The timetable idea works so well too. Have you built in special treats? The only time it hits a problem is if something unexpected happens. Have you heard of the Sunfield school, near Stourbridge? They specialise in children with autism, and run some excellent courses. I had a boy in my class who was not too bad in the classroom, as long as he had his timetable and structure, but had a major tantrum if we had to go into the hall. The Sunfield school came up with a brilliant solution for me!
Liz
LikeLike
Thank you for sharing your experiences. Until reading your blog I had no idea of the day to day and long term difficulties that come along with autism. I really hope your new plan helps give you guys a more peaceful life!
Abix
LikeLike
Toby is so lucky to have landed with such a smart Mom. I love every bit of your determination and love for your son. Thanks for showing us a photo. Toby is a beautiful child. I’d love to hear how things are going.
LikeLike
Julie that looks brilliant I would love to see how it works out for you. I think I will have to try the visual chart for my youngest he seems to have some sort of attention problems so I can see this way being less nagging for me and more input from him….thanks for the great idea 🙂
LikeLike
What a great idea Julie. I really admire you for reassessing Toby’s needs and being prepared to change your approach, as it’s all too easy when you’re right in the thick of the situation to keep on with what you know in case change makes things worse. I’m sure being able to communicate more clearly will be a real benefit for Toby.
Good luck with your new system :o)
xxx
LikeLike
My son’s preschool uses a timetable almost exactly like the one you have pictured. We have yet to implement it at home because we have few problems with the home routine.
My son is still learning to communicate with words and some of his meltdowns are most definitely related to his inability to tell us what he’s feeling. We’re working on this at home and at school, but I will be so relieved when he can tell us exactly what’s going on so we can help.
I’ll definitely be following along to see how things progress.
LikeLike
We used PECS and sign language with my youngest son when he was still non-verbal and tantruming as a result. It definitely helped.
I read recently the benefits of tools like iPod touches (or iPad) for helping autistic chidren communicate. I have a friend with an older son with Aspergers and she has found electronic devices invaluable for him especially as he also suffers from poor fine motor skills that is often found in children on the spectrum.
I hope this helps you with Toby and you have more days of calm with a happy little boy.
LikeLike
Sounds like a great approach to help Toby, it must be so frustrating for you both. To have a idea of what a day holds is something we all like and surprises are not always welcome, I hope it is successful for you.x
LikeLike
Visuals are key for our Leo, even though he is verbal I find it makes all the difference. Leo’s behaviour is so much better with a visual timetable for the day ahead. We have also discovered the iPad and Leo is loving all the learning apps. You are doing a great job, because it takes a lot of time making and laminating all those visual cards, I now draw everything on our glass splash back in the kitchen as I couldn’t keep up with the ever changing visual cards. Well Done you deserve a medal!
LikeLike
Dear Julie,
i dont know if you have already tried this…but i met a family who has a 1 1/2 year old child..since she is quite young to have a very large vocabulary, they are teaching her sign language…this way she express what she needs right away and there is no need of guessing…neither parent nor the child are deaf…its just a different way of teaching someone who cannot fully express themselves…i saw them ask the child to show them what she does when she is — hungry, sad, happy, sleepy etc..it was a really cool concept…i think something like this can help anyone…good luck let me know what you think.
——- wishing you the best of luck !!!
LikeLike
Hi, I currently work 1:1 with a child with autistic tendencies (not officially diagnosed) in a primary school and I certainly find a visual timetable helps. I really like the way your timetable works, with a finished box at the bottom, so Toby can have control of the pictures and can see exactly where he is with his day. I wish you success with this.
LikeLike
Hello Julie…the timetable really is a great idea…we used this with Jack when I was his 1:1 in (mainstream) school,and his confidence and comunication skills developed so quickly that his Mum used timetables at home too. They gave structure to all his days. Jack’s autism isn’t as deep as Toby’s…but Jack couldn’t cope with any sudden changes in his day, and was not always able to say what was upsetting him. By the end of the two years in which we worked togther, Jack was able to control his timetable change things round, and plan his days himself. I do hope that you are succssful with Toby’s timetable and that it meets his needs. Maybe you will be able to add MAKATON signs to his pictures eventually. We found the Makaton system easier than BSL for our younger children.
Love
Jenni
LikeLike
We have used this at school and find it very useful. We also have a book for each of our students that goes home each day. Before dismissal we use sympols to complete a page “Today at school I…” and there’s a “Yesterday at home I..” to be done at home. It allows for some continuity between home and school and encourages the student to communicate about himself. All the symbols are laminated and attached to velcro strips in a binder.
LikeLike
Wonderful ideas Julie – I so hope they work for you. Wishing Toby and all of you an easier and happier future.
LikeLike
Hi Julie
We use them with our autistic son as well and I have to get better at following up on it. I have a weekly and a calendar one for the month showing photos of school etc, A daily one would be a good idea
Where do you get the strip showing finished at the bottom
If you can get an ipad, there are so great apps for kids like Toby. I found the Grace schedule one does not go on the ipad much to my chagrin only iphone and ipod touch,
Have you thought that Toby might be anxious as that seems to be one of the main triggers for our son to get aggro so I am thinking of looking into anti anxiety meds as well.
I am very tied of aggro
Karnak
LikeLike
Hi Julie,
I work in special education (as a physio) and I think you’re right on the money with this plan! We use PECS and scheduling (with finish pockets, ours are a black and white check like a racing finish flag) very successfully with our students.
Have you looked into the iPad? We have had some success with a few students using it as a communication device that can go with the student wherever they go, as the others often seem to be more situation specific. There is a program that can be purchased as well that enables you to set up different pages etc with similar pictures as used with PECs – I could get you some more information if you like, or you could ask the speechie that works with Toby.
As an aside, I want to encourage you that he is already primed to be more successful in his communication because he is blessed to have caring, loving parents who are continuing to seek out successful strategies for their precious son. Working in the industry one of my biggest frustrations is that some parents refuse to think that there is an issue, or they continually sabotage the work of us therapists – I love working with children with special needs and their families, and especially those who are endeavouring to do so too.
Looking forward to hearing more about your journey, both the frustrations and the wins!
LikeLike