Understanding Savannah’s Needs and Preferences
Before we embark on choosing an AAC solution for Savannah, I realise that understanding her needs and her preferences is a key component in choosing the solution. As an Assistive Technology Advisor at Inclusive Solutions, I have my own preferences with regards to software and devices. This does not mean that what I like is necessarily the right solution for Savannah, or the only solution for her. So understanding Savannah in terms of her physical and cognitive abilities is important, as well as taking into account that she is still an 18 year old girl and her needs will not be the same as years ago when she first began using AAC .
Savannah is autistic and cerebral palsied. She used to be mobile but over the last five years she has lost her ability to walk comfortably and without pain. She now uses a wheelchair and transitions independently. She is a multi-modal communicator. This means that she does not depend on one dedicated method to communicate. She uses gestures, signs, pointing to picture communication symbols, pointing to pictures, pointing to familiar written words or names, spoken words or phrases and sometimes whole sentences and word approximations. She can point to what she wants, describe who she is talking about or who they are related to, ask questions and volunteer information. She is repetitive when she is anxious or unsure of what is expected of her. She is calmer and more compliant and focused when she has a picture based cue.
She does not like to use devices with a speech output function. She has an i-pad which we tried to use for her schedules and for communication. However, she prefers to use it for her recreational activities such as listening to music, playing her favourite music videos (she does not watch, but listens) and for taking videos and photographs of objects, people or anything that is interesting to her. She also uses the on screen keyboard to send e-mails to friends and family. She cannot read but she can type. She knows what she wants to say and to whom, and depends on us to spell out each word for her. Her posture when using the i-pad has to be addressed as she holds it on her lap and hunches over it, causing strain to her shoulders, neck and back.
She responds best to her schedules and social stories when they are presented on paper. She holds it, places it on her bedside or asks for us to stick it on her wall. After we have read a social story to her, she clearly shows us where she wants us to leave it, which is usually somewhere in her line of vision. It seems that having it where she can see and touch it, serves as a reminder to her about what it is that she is being prepped for. She also likes to take it with her to the event or activity if it is for that context.
With her schedules and sequences, they are usually needed for her activities such as baking, wiping her furniture, washing dishes or as a schedule for the plans for that day or week. She also prefers these to be presented on paper, and frequently points to them or touches them during the activity or during the build up to the event. She sometimes tolerates it on her i-pad, but she has never taken the i-pad with her on an outing. If I take it along, hoping that she will use it, she simply says “no” and ignores it. She prefers to hold onto a schedule or social story or even a pamphlet if that is available and relevant to the context.
This mix of using both high tech and low tech solutions means that we need a software that can be both an authoring tool to create print based interfaces and is also a dynamic display computer based interface. We know that Savannah needs a symbol based program to promote her independence in typing. She is motivated to use e-mail and skype to communicate with people she cares about and who she feels comfortable with. So if she types a message using symbols, the program must be accessible for sending e-mails, skype messages, cell phone text messages and other social media platforms such as Facebook or twitter so that she has the option to use those platforms.
The two communication software programs that are used most frequently in South Africa for computer based dynamic display communication are The Grid 2 which uses Widget Symbols, and Tobii Communicator which uses Symbolstix. The most common software to create paper based solutions is Boardmaker which uses Picture Communication Symbols. The most common hardware chosen these days for portability seems to be the i-pad, an All-In-One computer with mounting or a laptop. As we come to understand Savannah’s personal preferences and what works best for her, we have realised that one solution may not be the answer. It seems that much like ourselves, who use cell phones, tablets, laptops and a range of other technology to enhance our productivity and functionality, people who use AAC also need more than one option.
Next time, more about finding a solution to resolve Savannah’s problems with regards to her posture with the i-pad. Even though, she has a television, dvd player and a cd player in her bedroom, she still prefers the i-pad as her entertainment hub!
About the author:
Ten years ago the story of how Savannah began using pictures to communicate inspired many people. Her journey involved many things, from picture pointing with PCS, using the Big Step by Step to to learn how to communicate, the Tech Speak to participate in reading activities and classroom lessons, Speaking Dynamically Pro to make longer sentences and requests, to word approximations and then to using her own voice to speak some words and phrases; these were the stepping stones to Savannah becoming the young lady she is today. Through this journey, Desirae found her passion in not only helping her own daughter to communicate, but to also advocate and teach others about AAC. Desirae and the rest of her family understand how difficult the special needs journey is. They also provide a network of support and information to families who have a member with special needs, always striving to keep families together. “We can never imagine, the things we make it through on the Special Needs Journey, that break us wide open to become the people we never imagined we could become – a very special needs resource.”