How technology gave my son a voice and me some sanity

Something i’m frequently asked and have always wanted to write a blog post about is my son Chase and how he communicates.  In case you haven’t had the chance to look at my about page (but honestly you really should have a quick look there’s cute pictures of the kids!) i’ll just recap quickly.  Chase my eldest son was born with lots of unexpected complications and due to oxygen starvation now lives with a severe and uncommon form of Cerebral Palsy which affects his whole body, this includes (much to my dismay) his speech. One of the questions i get asked reguarly about my son is does he understand you so i thought i’d answer it here!

Chase is non verbal so it’s extremely easy for people who don’t know him to think that he doesn’t undestand things going on around him but it’s actually the very opposite, Chase is slightly delayed in his learning ( as most people would be too if they spent the first few years of life with a sensory disorder and unable to use your hands and legs) but not as much as people think he is.

Chase is lucky enough to have a VOCA  (Voice Output Communication Aid) which he is extremley fortunate to have funded via the NHS. It took many months of assesments and me providing evidence with videos to prove that he was able to understand what was being said to him and that he wanted to join in with 2-way communication before they would supply him with a computer and a package to meet his needs (and to be honest meet my needs as well, those you you with toddlers willknow how frustrated they get when kids can understand everything but struggle to communicate!)  Here’s one of MANY videos i submitted to prove he had the potential for 2 way communication. WARNING! you may want to lower the volume 15 seconds in, i’m singing – its not good, you have been warned!

Chase started being assesed from the very young age of 2 for his device, 4 years on and wer’e about to get our second computer and move on to our third package (each package the words and symbols become more complex enabling chase to build more sentences and to communicate more quickly)

Here’s an example of his current home page.  I’m not entirely sure why there’s a prayer button on the front if I’m honest (bad mum alert i should be on top of these things!), the last few months of sleep deprivation have meant i’m a walking mombie and Chase’s VOCA isn’t as up to date as i would like it to be!

As you can see there are words as well as pictures, the pictures enable children that are unable to read the ability to understand what they’re selecting, thankfully Chase is now almost at key stage of level 1 for reading so when given new cells (the name for the buttons on the sreen) he can usually decipher them and get to grips with changes very quickly. Being able to read means he can also type in words he learns or sees that are not already programmed on to the VOCA, one of the first things he ever typed in to ask for was Xbox (another gamer in the family hurrah! I’ll be adding a blog post about how he plays Xbox soon)

I don’t doubt that he will eventually be typing in swear words in his late teenage years – although i’ll probably put them on there for him when it’s age appropiate just to speed it up for him (cool mum alert – i think, maybe reckless?!!)

Chase’s fine motor skills are pretty non exsistent so he uses a joystick and a switch button to access the VOCA. This is equally the same reason why makaton or signing havent been a sutiable option for most of his communications – that being said we do still use some basic modified makaton for the times when we dont have access to his computer, it’s essential that we have some form of back up for basic needs like, food, drink and needing to go to the bathroom when we dont have the VOCA on us.  A lot of communication is non verbal though and as his parent when we go somewhere without the computer I’m still able to have to figure out his needs

I feel so fortunate that Chase has been able to find a voice with technology and communicate not only with us but with others who are maybe just meeting him for the first time, it immediatley makes people think differently about him and his disability.  For me as his mum the thing i found most difficult about coming to terms with his disability was the idea of never being able to hear his voice and the limitations that being non verbal would have on his life as an adult. With a lot of hard work and determination from him all this has changed. You can check him out below using his VOCA to communicate his first ever Christmas letter to Santa.

In case you couldn’t hear thanks to the mega screams of his younger sister Chase says

‘How are you? I like teddy and cars please i want thank you I good and excited Goodbye’

Over the next few years Chase will work towards adding punctuation and will have the ability to use different tenses as well so his sentences will come to sound more like the speech you and I are used to

Tech is an amazing thing and i cannot wait to see what the future brings in the way of AAC (Augmentive Alternative Communication) How do you think you’d cope with a VOCA instead of using your voice for the day?  Just as a side note the top speed you’d be able to type with his communication access method as an adult is approximatley only 16 words per minute!

Chase has recently aquired some new tech for his VOCA which you can read about here!

This post is linked up to the brilliant Honest Mums Brilliant Blog Posts

 

Brilliant blog posts on HonestMum.com

4 thoughts on “How technology gave my son a voice and me some sanity

  1. Hayley says:

    I absolutely love the first video, him managing to communicate with you and you knowing him so well to understand his needs was sooo moving! You truely are a super mum!

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