12-year-old Natasha* was born with a rare genetic condition that means she cannot speak and has little power in her upper limbs. Here her mother describes how assistive technology has helped her communicate

Our daughter Natasha was born in late 2003, apparently perfect apart from a cleft palate, a condition that ran in my family. We never suspected any problems until her first seizure, when she was two-and-a-half months old. We were in and out of hospital on a regular basis, often for extended periods of time, trying to control the seizures and deal with illness caused by her poor immune system.

With the introduction of medication the seizure frequency increased, reaching 80 a month. My husband and I kept precise records of each episode and fought with her doctors to have her medication withdrawn. Having exhausted all potential remedies we discovered that her seizures were untreatable with drugs.

Nat developed slowly and started to roll and sit independently. She managed to lift her hands to her mouth and could negotiate a spoon when feeding.  But as she grew she lost the ability to use her arms and to sit or roll. She could no longer reach out, touch and hold things. Where once she could repeat the vowel sounds, she lost this ability too. She did not cry for a year and a half and she did not laugh for almost two years.


Therapy
We were told about a therapy called Advanced Biomechanical Rehabilitation (ABR) and proceeded to take our daughter to classes in Singapore, three times a year. We worked on Nat for several hours a day using the techniques we had been taught and saw some great results. The seizures appeared to reduce and she was more comfortable. We followed the programme for several years and Nat slowly regained limited use of her arms as well as impressive head and neck control.

Her seizures were back down to one a month or if she had a temperature caused by infection. When Nat was six years old our lovely and very persistent geneticist was finally able to explain her condition: Nat had a random deletion of part of Chromosome 2. Evidently many people have partial deletions of chromosomes, but Nat’s happened to be on the chromosome with some of our most important genes. This explained her seizures caused by inflammation of her brain when infection struck.

By now, however, Nat was restricted to a wheelchair. As she grew she twisted developing severe scoliosis. She developed pain associated with so many other problems. In addition to these, and probably most frustrating, was her inability to communicate.

Nat understands everything going on around her. She is a very smart, cheeky, young lady and attends her local public school in the little country town in which we live. She completes the equivalent level of schoolwork as her peers but cannot talk. Can you imagine being unable to communicate through speech, and then on top of that being without use of your arms to write or sign? With a lot of work through her aids at school and thanks to the physical therapy she receives she is able to nod and shake her head. Nevertheless Nat cried a lot and we didn’t know why. Was it her back, her stomach, her head, or her teeth? She was frustrated and so were we!


Communication
We were now at a stage where Nat’s ability to make herself understood was paramount. We took her to an expert, who introduced us to facilitated communication, where we assisted Nat’s movements so she could better express herself. This was done by supporting her arm as she touched a screen or selected a toy. She started to want to communicate and over time we could feel her moving her own arm. Unfortunately facilitated communication is not widely accepted as many professionals doubt the ability of those with special needs to communicate in this way.

HKL

www.helpkidzlearn.com

So I started looking at switches. Our speech pathologist had tried this before, but Nat had shown little interest. I discovered the HelpKidzLearn website. Using an adapted mouse my husband made and a very large, cumbersome switch recommended by our speech pathologist, I let Nat try some of the games on the site. Success! She seemed to like them.

The switch was not sensitive enough, however, and required a fair bit of pressure, which Nat struggled to apply. After purchasing and trialing wands, joysticks and several ‘sensitive’ switches I found the Inclusive Technology (IT) website. My husband visited the UK fairly regularly, and IT sent equipment to Australia for reasonable postage.

SimplyWorks APPlicator and Smoothie Switch

SimplyWorks APPlicator and Smoothie Switch

We started using the iPad so I purchased the Pretorian APPlicator, and the Smoothie switch, which plugs into it. This worked well, but I soon realised that if we were to use it while out and about the best option was wireless. This eliminated having wires hanging everywhere and the temptation for Nat to play with them. So I purchased the wireless it-Switch and SimplyWorks for the iPad.

ChooseIt! Maker 3

ChooseIt! Maker 3

I needed something to enable Nat to do the same schoolwork as her peers, but with switch access. ChooseIt! Maker 3 was a great option. With the huge developments Inclusive Technology has made to the program, and the development of the app, I can now put all her schoolwork on to my computer at home and the school can access and download the units on to Nat’s iPad using the ChooseIt! Maker 3 app. The scanning function allows her to select an answer to each question, and the teacher can check her progress after each unit is completed. As she gets better at switching, I can increase the number of options available for answers.

Tobii Dynavox Compass App

Tobii Dynavox Compass App

We use the HelpKidzLearn game apps on her iPad to warm up for her schoolwork and for fun at home. Nat loves the games and is very competitive when her classmates try and outdo her. We use the same switch and settings for her Dynavox Compass app, so we can easily switch between schoolwork and her communication app. We use voice over and iBooks with two switches to enable her to go forwards or back a page, and the switch function can be changed to allow her to access her music on her iPad, which she loves.

Maxess Mounting Systems

Maxess Mounting Systems

One thing we did find difficult was positioning her switch so that it didn’t get knocked around or moved. After trial and error I found the Maxess Mounting System on the IT website, which fits perfectly on her tray, and we use the Yogibo Traybo and a RAM  mounting system for comfort when our daughter is out and about and at home.


What next?
Communication is still a big issue, and using the keyboard to write via switching is very slow and cumbersome even with predictive text. Switching takes a lot of practice and encouragement, with an enormous amount of patience, which a lot of people lack when it comes to engaging in conversation. Nat is lucky to be in such a wonderful country school with teachers and children that are more than willing to spend the time.

Most of the technology we use I have sourced from the Inclusive Technology and HelpKidzLearn websites. I am constantly looking for new ways to improve Nat’s communication and make it easier and less time consuming for her to express herself. I am just hopeful that with more research and new developments other options will emerge. Our next step may be to trial the new eye gaze technology, which seems to be a great development with a lot of potential. It is just whether or not this is an option for Nat.

The main thing is she is having fun and showing interest, which has been the case since she started using the HelpKidzLearn games. She is still waiting on HelpKidzLearn to develop a horse riding game app – so come on HelpKidzLearn, there’s your next challenge.

As Nat’s carers and facilitators of her communication we are very grateful for the time and effort put in by companies like Inclusive Technology and HelpKidzLearn in developing new technology and concepts that ultimately help improve her quality of life. They really make a huge difference to us all.

* The name of the author’s daughter has been changed to protect her identity.

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About Contributors

Sam, who lives in Australia, is the mother of a teenage daughter with a rare genetic condition with resulting physical and communication difficulties. She is an advocate and user of assistive technology.

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