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Communication without words

qtandcpqtandcp Posts: 2Member Connected

I’m Jennifer, mum to four-year-old Quinns and his eight-year-old sister. I share stories of our everyday life on my blog: Quinns, trains and cerebral palsy. By sharing some of the struggles we face with a disabled child I hope to raise awareness of some of the issues families can encounter, before Quinns came along I really had no idea.

Quinns is a bright, clever and sociable little boy. He absolutely loves any sort of transport but at the moment it’s particularly helicopters. He’s a total thrillseeker, with a real slapstick sense of humour.

Anyone who meets him knows that he has a lot to say. People often come and speak to us when we’re out because Quinns has attracted their attention with a smile. He’s a very sociable little boy who loves going to nursery and being with his friends. He’s really keen to play with them and they are keen to include him.


To give his full diagnosis, he has quadriplegic athetoid Cerebral Palsy. He is unable to sit up without support. At the moment he gets around in a supported buggy, but shortly he’ll move to a wheelchair. He is extremely bright but as of yet, he doesn’t have any distinguishable words. I’m amazed how well he communicates without them.

We all know that he understands everything we say and that he’s using various methods, such as body language, sounds and facial expression, to get his point across. I never fully understood how to communicate without words until Quinns came along to tell me.

He started working with a speech therapist when he was 18 months old. She knew immediately that he was a candidate for an Eyegaze computer. It tracks his eye movements and allows him to communicate using pictures and symbols. He amazed us during a trial when he managed to say, “please help me, I want to play a game”. It was total coincidence because I knew he couldn’t read, but it was a beautiful moment all the same.


When we first got the Eyegaze for home, we had to choose his voice. It came down to ‘Stuart’ the Scottish man or ‘Harry’ the little boy. There was no option at the time for a little Scottish boy (‘Andrew’ was launched just last week). We spent quite a bit of time debating backwards and forwards about which one was most appropriate. It didn’t matter what we eventually decided on because the first thing Quinns did was change the default voice to The Queen! I love that he can assert his authority in this way.

We now use the Eyegaze regularly and he’s just getting better and better. It has totally changed our way of thinking. We have to look really closely at the pictures and listen carefully to the words. For example, his favourite food is custard, which he often eats from small pots. When given the chance to choose pudding he picks yoghurt on the Eyegaze. Ignoring that it says the word yoghurt, you need to know that the picture is of a small pot.

Having an Eyegaze computer goes far beyond being able to choose between things, we managed that pretty well using his facial expressions. It’s being able to tell us how he’s feeling and what’s happened to him that day. The chance to be able to leave the game that his sister desperately wants him to play and being able to tell her that he doesn’t want the book she’s picked but that she should go and get another. It is about being in control.

The start of the new school term is looming. He’ll be back at nursery with all his friends and the Eyegaze will be going with him for at least some of the time. I think everyone is a little nervous about how it’s going to go down in amongst the 30 or so three to five-year-olds. That being said, we’ve been showing it off at home to any interested parties. Quinns’ best friend came over for a play and it was great to see that Quinns was able to tell us that his best friend had crossed a line, when he was getting too close and doing too much on Quinns’ computer.


I personally can’t wait to see what Quinns has in store for his nursery class. Since he usually gets the last word, here’s the selfie he took as his contribution to the TAC (Team Around the Child) meeting at the end of last term.

Have you or your child been through the education system using an AAC device? Do you have any advice for us as Quinns starts out on his journey through nursery and school? Let us know in the comments below!

Replies

  • April2018momApril2018mom Posts: 2,620Member - under moderation Disability Gamechanger
    edited September 2019
    No.
    But my advice is to take lots of photos of Quinn! We are about to start school too my son is almost 3 with a congenital physical disability that means he uses a wheelchair as he has no leg function at all. Keep a record of communication with the teachers too. Best wishes! 
  • SteveESteveE Posts: 46Member Courageous

    What a great story and what a great lad you have! So pleased you were able to get an eye gaze machine so early. Clearly making giant leaps with communication.

    We are a tad too late for such devices. Matt is now 48 and when he was assessed for electronic aids it was the mid 1980s and things like the brilliant Tobii range were not even dreamt about back then. Even so, he was at the tale end of education.

    But hey - armed with that device, the whole world of learning opens up. No doubt, using the device in a class environment may result in a few probs but kids are generally better at understanding needs than we are. 

    Good luck to you and Quinns.

    Steve

  • AilsAils Posts: 1,274Community champion Disability Gamechanger
    What a great story about Quinns, @qtandcp.  Thanks for sharing it with us.  So glad to hear that Quinns is doing well and the eye gaze machine sounds like a wonderful invention.  I wish you all the best for the future.  :smile:
  • mossycowmossycow Posts: 486Community champion Pioneering
    Oh I absolutely love that he chose the Queen! Hahaha! 

    Hope he's had a good week at nursery, bet he's tired! 

    No experience of CP or assisted communication except as a teacher but enjoyed hearing about Quinns

    "I'm trying to live like a random poem I read that ended 'to bloom where we are planted"

  • Adrian_ScopeAdrian_Scope Posts: 5,051Administrator Scope community team
    edited September 2019
    A lovely story @qtandcp. Thank you for sharing it with us. Has Quinns started back yet? How's he been getting on?
    Senior Online Community Officer
    Scope
  • qtandcpqtandcp Posts: 2Member Connected
    Thanks everyone for your comments. Quinns is doing really well since he started back at nursery with his eye gaze computer. He absolutely amazes me with what he comes away with on it! 
  • dolfrogdolfrog Posts: 355Member Pioneering
    Great to hear...my son is 21, studying maths at uni and has used AAC (augmentative and alternative communication) since he was about 15 months..getting his first actual communication aid aged 2.5.  he now uses a combination of eye gaze and touch access with a keyguard.  There is so much I could say here but I'll try and keep it brief; the most important things maybe being; always try and have some sort of "low tech" back up for when technology goes wrong or batteries die! and make sure (very quickly) he always has appropriate AAC with him at school.  Communcation is fundamental to learning, education, taking part, socialising and life overall so don't let anyone  try and persuade you that he doesn;t need his AAC system all the time at school and home!  For more info and support look at www.1voice.info and www.communicationmatters.org.uk   Just been to the national communication matters conference in Leeds...a wealth of info, knowledge and experience to share there.  (a bit biased maybe, I am a trustee!)
    There was an AAC research paper group on the On CiteULike research paper web site which closed down last March, I was able to download a list of the research papers from the various groups I was interested in prior the close=ue of the web site including the AAC groups list of papers. I am still trying to find alternative web sites to post some of these collections as many of the current web sites only provide limited free contriibution space. If you are interested I could share this list of research papers regarding AAC

  • Natasha BrownNatasha Brown Posts: 112Member Courageous
    edited September 2019
    Hi  my son is AAC user since age 9 - (gridplayer, runnning on ipad since it was feasible). At his level - he is 22 but uses simple sentences. he can tell us what he wants, where he has been, etc. 
    I love the yogurt pot story - we have to be detective! - there was a blog some place will try and find but AAC users are very logical and inventive - 

    e.g. my son tells us he "went to winter one oh land" 

    - went to Winter Wonderland (to see live teletubbies show, yes at age 22!) 

    he also recalls the day we "went to robot dye bye clock "

    - we went to Robert Dyas to buy a clock for the kitchen... 

    to say his dad is spanish he goes to food grid and selects
    spaghetti
    then back spaces to spa
    then adds nish 
    to make
     spanish 

    ...the AAC team were reluctant back then, AAC would not make him less autistic, they said...no it hasn't. but we can understand him when he wants to script. he should be able to repeat and repeat with his AAC voice....same as a verbal person with ASD. he spends hours talking to himself, repeating lines form horrid henry... 

    and famously yes I was THAT  parent who refused to hand back the loan device we had finally gotten hold of for him to start using and learning - back when it was £2k for a touch screen tablet computer - yes indeed I held onto it for several months until we had a grant through to get him a replacement!  
  • Natasha BrownNatasha Brown Posts: 112Member Courageous
    (and didn't he choose Queen because "sounds like" Quinn?  

  • Chloe_ScopeChloe_Scope Posts: 6,647Administrator Scope community team
    That's so great to hear he's doing well at nursery @qtandcp! Such a lovely piece! :)
    Chloe
    Online Community Officer
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