Sometimes you need a little perspective. A few months ago, after reading one of my draft posts, my friend emailed to ask: “Erika, is Emma reading?”
Wow. I realised that I’ve not shared anything about Emma’s communication journey with you. This is a complete oversight on my part. When I’m stuck in a battle I don’t always have the opportunity to look around and admire the view. (Every parent of a child with special needs will understand this.)
So, yes. Emma is reading! And writing this is making me quite emotional because it is almost unbelievable. My child who was diagnosed as having a Gross Motor Function of just below Level 4 is reading. And it only took a year. Here’s how we got here.
Speech therapy for CP kids?
Since the age of two, Emma has had some form of speech therapy. However, when you’re dealing with a child that cannot hold her head, swallow or sit – speech development is the furthest thing from your mind. Secretly, of course, I hoped that the words would come at some stage, but they never did. The bar was low. Our priorities were: being alive, stable and nourished by food. And, as you may know from my previous posts, my focus was entirely on Emma’s physical health development.
However, as she grew and her health improved, I started thinking more about her communication. At first, the connective tissue therapy (ABR and then BDA) gave her certain basic skills: the ability to focus her eyes, to swallow firmer foods and have better tongue movements. Then came the first communication: being able to nod her head for yes and shake for no. That was momentous for our family.
Communication – then what?
This first communication was a huge breakthrough for Emma – and we wanted more. But we were stuck. I realised that potty training, for example, would never succeed if she couldn’t communicate her needs better. And it was obvious that she was developing cognitively and had complex ideas and questions that she wanted to express, but because I couldn’t understand her, there were some very public meltdowns.
We were living in Germany at the time, and after consulting with her speech therapist, we had her assessed for an AAC (augmentative and alternative communication) device. She was approved and two weeks before we moved back to South Africa, the Tobii tablet with eye tracking was delivered. This was great news – the Tobii converts eye movement into speech so we hoped this would give us the next steps.
Using an AAC device
There was only one problem. We had no idea how to use it. There were several reasons why and it took us over two years to solve them.
Here were some of the issues (and how we overcame them):
First, what software to use? We needed the right software that would work for Emma and be user-friendly for parents who would be programming it while in various states of burn-out or fatigue. In the end we found GRID 3 from Smartbox and it’s been great.
Next, you need a therapist who is AAC trained and has the knowledge of early childhood development and who has the technical know-how to programme and work your device.
When looking for a therapist make sure they tick all these boxes.
Positioning of the device is key. It took a year to find it, but Emma now has a wheelchair with a mounting that makes it possible for her to have the Tobii everywhere she goes.
Finally, and so importantly, your “village” needs to support you. With this I mean the people who you surround your child with, all of them need to be onboard with the decision to start using an AAC device.
Here’s how the village did it
We – my husband and I – could not have helped Emma alone. There were several people who have played a crucial role.
- Sonja Higham, an AAC-focused physiotherapist, from Speak2Me in Cape Town has been nothing less than a saviour to Emma. Her efforts and knowledge have transformed Emma’s ability to communicate. Sonja and her colleague Kristyn started slowly with one or two AAC sessions per week in order to build up her confidence and skill.
- Our amazing facilitator, Shizelle Higgo, has been a bridge between what Emma learns with Sonja and Kristyn, what she learns at home and what she learns at school. Having a facilitator/carer who embraces the AAC is particularly important when you start. Shizelle is Emma’s companion and friend at school. She spends a lot of time with Emma practicing on the Tobii and also sees to her personal care.
- Emma’s friends. When Tobii speaks in class, they all shout: “Miss! Emma wants to say something!”
- Thanks to Emma’s teacher (Roxanne Bester) and the school therapist ( Delia Tew) at Vista Nova in Cape Town, we were able to integrate the use of the device into the school day. All Emma’s term assessments are converted into AAC digital pages so that she is able to answer questions by typing with her eye control and show independently what she knows. We are so grateful to these wonderful people.
All of these incredible people worked very hard and it’s why I can say that Emma can read. She can also do basic maths, she can tell the time on an analogue watch, she can write short sentences and can spell. Last term, she even got a certificate of merit for Afrikaans and maths!
Proud doesn’t begin to describe it.
As Sonja pointed out to me on the first visit with Emma: If she can use this technology, the sky is the limit because there will be jobs for her in the future.” To read more about what Sonja has to say, follow this link.
I’m sure other parents have their own stories of AAC devices, I’d love to hear them.