And no I don’t mean the rippling muscle variety, although come to think about it I am pretty passionate about those too – but that’s an entirely different story. I mean the Picture Exchange Communication System which is what Toby has learnt to use so he can communicate his basic needs.
One of the first indications of there being something amiss with Toby’s development was that he just failed to develop speech. He’d been early to do all the physical stuff – walking at 11 months etc but though he’d been babbling all those precursors to speech like bababa, mamama and dadada he seemed stuck there and his speech just never materialised. Toby was 2 years old by the time we got the diagnosis of Autism and he still had no form of communication whatsoever. He didn’t point, wave or gesture in any way in fact he didn’t have any way of communicating anything. I used to guess when he was hungry, thirsty or tired and when I got it wrong life was miserable for us all. Getting a diagnosis is a battle in itself and for many families it can take over a year to get to a point where a professional is prepared to put anything definite in writing. This is an agonising time for families as there is very little support available to children without a confirmed diagnosis. Even with a diagnosis we were facing a wait of 6 months to get an initial consultation with a speech therapist to assess Toby’s needs. It was time for action.
Thankfully the internet is fabulous as a resource and I spent hours every evening reading all about language development, autism and various intervention methods. There is a lot out there to sift through. I looked into some of the more intensive interventions (ABA and Son-rise) but with Amy’s needs to consider as well it didn’t seem possible to commit the considerable time and expense that both of these entailed. PECs on the other hand was based on a simple theory that anyone with a bit of dedication and determination could put into practice. I ordered the manual, computer software and all the materials that we needed and we started as soon as they arrived. The first PECs card we ever made was for milky bar buttons and although it was slow to begin with, by Christmas Toby had 4 additional symbols that he could exchange without prompting. He’s gone from strength to strength and is now able to construct very simple sentences to request food, drink, toys, dvd’s and a few simple activities.
If anyone out there has a non-verbal child I would encourage them to look into PECs. It’s widely used in the USA and Canada and is becoming more widespread over here. It’s certainly transformed life for my little boy and I can’t express how thrilling it is to see him walk purposefully to his book, browse his symbols, compose his sentence and bring it to me to ask me for a custard cream and drink. Without PECs life would be a whole lot harder and more frustrating for him.
For more info on PECS see here.
On a knitting note, my moo cards arrived – printed via my pics on flickr. I’m so pleased with them but am having difficulty parting with any at the moment!
For those of you who’ve asked, moo cards are cute little contact cards that you can order straight off any photos that you upload to flickr. They’re around 7cm long by 2.8cm wide and you can get 100 (of whichever of your photos you want – all different or all the same). You can customise the back to give your contact details and hand them out to all of your friends. It’s free to open a flickr account and upload photos and the moo cards were quite cheap – around $24 per 100.
Also, for those who’ve kindly asked about buying my rabbits – I’m afraid that there won’t be anymore for 2006. I’m planning to make as many as possible over the next month and put some into my ‘shop’ in the New Year. Will post glimpses between then and now and let everyone know beforehand when they’ll be available – thanks so much for your interest.
little cotton rabbits 
Your cards are looking good are you selling them?
PECs sounds brilliant, how wonderful for Toby to be able to express his needs. I can only imagine the frustration for you all before PECs. The internet truly is a wonderful tool, we now have access to so much information that can transform lives for the better.
Have a good weekend Julie.
What an inspirational person you are Julie. PECs and especially your great efforts must have transformed what the rest of us take for granted in everyday life. Toby is so lucky to have you as his Mummy.
Sorry, what are moo cards?
I LOVE your flickr cards Julie. I’ll swap you one of yours for one of mine 😉
I need to know how to buy from you too, I can’t seem to see where to do it. Am I being silly?
i’m confused too, but what are moo cards?
I was over at Moo cards the other day too, I thought they would make brilliant business cards for the crafty person.
PEC’s is here too, and I believe used widely. Bailey had been talking, limited as it was, but then regressed and stopped completely so we used a home made card system to help bring back his speech. He would point to the card on the fridge and I would say the word, if he could repeat the word he got the item, this was mainly food related. He still got the item if he didn’t say it after some encouragement but slowly he began to point and speak. Gradually I removed one or two cards, like milk and juice, as they were used two or three times a day and eventually he realised they were missing and just said the word. We were very lucky that Bailey responded to his intense external therapy so well and within two years was speaking, but it was an awful and stressful time.
I agree with you that there is so little support and information available. Would I be able to put your article about the PEC’s cards on Autism Action (my fledgling web site about Autism)? I hope to do a lot more work on the site in the new year and provide real advise that will help families.
Have a lovely weekend.
Isn’t the web a wonderful source of information. I remember how frustrating it was for our little girls just before they learned to talk, it must be very hard if the language doesn’t come. The cards, so simple, such a great idea. Did you read anything about baby/child sign language?
Hadn’t heard of Moo Cards, they look funky.
We used PEC’s with our son (who had Down Syndrome) when he was about 3 or 4. It was really useful and helped so much to ease his constant frustration at not being understood.
Thank goodness for the self-help opportunity the Internet provides us all with. And your Moo cards are great – I’m slowly building up my collection of moo-able photos to get some made.
yipeee it seems I can comment on your blog now!!! The internet is an amazing resource, my sister has been through a very similar thing with her youngest son and has found the internet invaluable. She too had the run around for years with doctors. She now is doing the DAWES program which I think comes from Britian.
I LOOOOOVE your moo cards, so sweet.
I love those MOO cards – I think I need to get some done myself!
Thanks for sharing. My daughter has a boy in her second grade class who has autism. They have a wonderful special aid that helps him throught the day and try his best to be and learn in a public school. It always does my heart good to see parents and support work together in finding ways to fullfill a need. I also get so much inspiration from moms who make it all work.
On a lighter note you do beautiful work and the cards are great! I too would have a hard time giving them away.
What a scrumptious blog! Everything is so lovely! Had to leave a comment here as PECS was an incredible addition to my son’s life as well. Amazing how such a simple thing can change a person’s life. Best wishes!
PECS transformed our lives, too! Wasn’t it a relief to be certain of what your son wanted? I know exactly what you mean about the thrill of those composed sentences. My son was so pleased with himself! He now uses the pictures on a communication device and enjoys having a voice as well. Best wishes!
PEC’s is a wonderful way to communicate with your child. I work in a special needs preschool program and our children range from Autism to speach delay. We use PEC’s on a daily basis and are always generating more as needed. In addition to pictures we shoot with the camera we also use a computer program called Boardmaker – http://www.mayer-johnson.com/. It’s very versatile and comes with addendums to add more to it.
I love my job and I love to see our kids discover conversations – either by verbalization or by using pictures. Every word is precious!