ABOUT ME: Communication & Choice Making Guide
Communication and choice making skills are something most of us take for granted. If you think about how you interact with friends, family and work colleagues, much of it revolves around talking. Throughout the day we share snippets of our life including information about our friends, family, weekend activities and our likes and dislikes.
For a child or person who is non-verbal this dialogue needs to happen in an alternative way. My son, BJ, has Cerebral Palsy and is non-verbal and I have struggled to ﬁnd ways to ensure people interact with him and allow him the opportunity to share his life with them.
Something that has worked well for BJ across all settings including preschool, school and vacation care is an “about me” book. This is a home-made book which gives a general overview of BJ. It provides a quick reference to information about his likes and dislikes, people who are important in his life and a brief explanation of how he communicates. It stays with his wheelchair giving easy access for anyone with him. Along with the information it contains photos to ensure it is engaging to those sharing it.
I was slow to make a new “about me” book this year and what happened as a result emphasized how invaluable this book can be. I discovered BJ was receiving a “treat” of a chocolate milkshake occasionally. This was being ordered by his carers at his new day program. It is of course lovely that he was getting a treat except BJ doesn’t like chocolate milkshakes; he is passionate about strawberry ones. I can’t imagine how frustrating it would be not getting your favorite ﬂavor when going out for a treat. It is my fault for not making the book earlier in the year and this situation highlighted the need for me to provide this kind of information.
The “about me” book doesn’t take long to make and once it is saved on the computer it is quick and easy to update over the years simply by changing the details and photos as needed. We print out BJ’s book at home in A5 size which makes it portable and easy to use. We have our own laminator which we use to laminate the pages making the book more durable.
“About me” books are individualized but here is a guide to get you started.
Page one should include a short introduction with your child’s name and photo. I also add information about how people should share the book with BJ. It is amazing how many people take the book and have it at adult height where he cannot see or share it with them. BJ’s introduction has a reminder included, “I really like sharing my book with people and showing it to you at my pace. I like it when you are at my level so we can share my book. If I want to skip ahead a few pages that is because there is something important that I want to show you”
I think it is vital that people understand it is your child’s book and that their role as a communication partner is to facilitate its use, not take over.
Page two we dedicate to BJ’s immediate family. We include a family photo and information about what BJ enjoys doing with each of us. For example – I love going to the park with my Dad and swinging on the wheelchair swing. Dad pushes it really high which I think is fantastic. I like cooking with my Mom. Cooking chocolate cake is my favorite. My sister, AJ, has pillow ﬁghts with me every night at bedtime. I laugh a lot when she does it.
Adding details about each family member gives a communication partner something to “chat” about with the child. In an educational setting it also provides a bank of information which can be drawn upon in class time. If a teacher is getting the class to do a story on their family and a child is unable to provide this information the “about me” book allows the teacher to make suggestions and include the child.
Page three in BJ’s book is used to share more details about other important people in his life. BJ has grandparents who live next door so this page is about their relationship and the things he likes to do with them, for example: he loves going to the cafe to get a donut as a special treat with his Grandpa.
Page four is all about BJ’s preferences. When BJ is out with people that don’t know him this page offers a quick reference of what he may like if they are ordering food or drinks on his behalf. If a child is non-verbal people often assume what they may like based on what is generally popular or their own personal preferences. For this reason we include the food and drinks he likes in the book. It is important to be speciﬁc with the details. Instead of saying BJ likes donuts we say, “I like all donuts but my absolute favorite is a cinnamon donut.”
We also include the current movies he likes to watch. The fact that he likes Mr. Bean immediately gives the staff an idea of BJ’s great sense of humor.
Pages ﬁve-seven in BJ’s book are devoted to more information on activities he likes to do.
Page eight – This page is probably the most important in the book. We use this page to share how BJ communicates. It is important to let people know the various ways your child may communicate and also to let them know if this is something new or well established. BJ has a new iPad program and although I would like staff to use it with him I don’t want them to think he is an expert.
We also use this page to explain that communication partners need to allow BJ time to organize his body before he can respond to their questions using a device or low tech communication board. We ﬁnd that people often repeat the same question over and over thinking BJ doesn’t understand but it is actually that he needs time to respond. I also like to emphasize a few messages here using short sentences like “I do have preferences and I love to have a choice” I believe that low tech systems play an important role in the life of children who are non-verbal. Although BJ has an iPad with communication programs we have found that there are barriers to this being used in particular situations. Casual staff may not know how to operate a program or device, glare outdoors and the inability to pass it around with peers can all mean that a device isn’t used. A staff member recently commented that in a group situation BJ’s “about me” book was used to share information with his peers and she found it easier for everyone to access and more social than the iPad. We have found people are naturally curious so they are drawn to BJ’s “about me” book. This provides a ‘conversation starter’ with caregivers, peers and family while educating them on BJ as a person. Keep it simple and an “about me” book is a valuable tool.
Julie Jones is the creator of Have Wheelchair Will Travel (www.havewheelchairwilltravel.net) where she combines her skills as an ex travel consultant with her life and experiences as a Mom to her son BJ who has Cerebral Palsy.
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This post originally appeared on our September/October 2014 Magazine