Although the main focus of our blogging is around travelling as a family, we’ve found one of the places where BJ needs support is when he’s at respite (short term accommodation). When he started going to respite we had a sit down meeting and went through every tiny detail of his care, his likes, dislikes, quirks, medication and everything in between. It was A LOT of information to pass on and that information sits in a folder on the bench at the respite house for staff to refer to. Some staff at the house have worked there since BJ was in primary school and attending as part of a holiday day program but other staff are new. Staff tend to regularly change so we feel information is passed along the line a bit like a game of pass-it-on. Lots of good first-hand information is shared but with small details missing. When a person is non-verbal we think the small details matter and let’s face it, we all like things a certain way and there’s no reason that should be any different for someone with a disability. So, recently I decided to do something to help with this situation and enlisted the assistance of a speech pathology student who has agreed to share tips on how to make a communication book for someone who is non-verbal. Over to Amy!
My name is Amy and I’m an almost-graduated student speech pathologist. I got in touch with Julie and her family through my sister, an Occupational Therapy student, who is a support worker for BJ. Julie wanted to develop some communication resources to use with BJ, so in I came to help out.
Here, I’ll run through a step-by-step guide to creating an ‘About Me’ book. We made this for BJ to take to respite, where some of the staff were unfamiliar with him. Since BJ is non-verbal, this would serve as a way to keep staff informed about him and what his usual routines are.
Step one: Plan. Consider the purpose and audience for your book. Who will be reading it, and what information might they need? In our case, the audience was respite staff who may not have met BJ. So, we needed to include all the information they would need to keep BJ comfortable.
Here’s what we included:
- Communication tips
- Likes & dislikes
- Morning, daytime, bathroom and bedtime routines
- Food & drink- what he likes to eat for breakfast, lunch, dinner and snacks, and how to support him during mealtimes
- Cautions/warnings regarding his care
- Pictures of BJ
Step two: Create. Think about how you can make the book eye-catching- we added a simple coloured border and lots of pictures. Make sure you end on a positive note!
Step three: Revise. In our case, I did not know BJ very well, which was really helpful as I found some things unclear in the script Julie had written for the book. It is useful to have someone read the book who has no idea about the person it is for. Make sure your wording is clear and concise.
Step four: Make. We printed our book on A5 paper so that it wouldn’t be too overwhelming for staff. We laminated each page for durability and hole-punched them so they could be attached on two keyrings.
Step five: Trial and error. Have a go! Get feedback from staff, and other family members, and make adjustments if needed.
- Simplify your language
- Be direct, but polite
- Use dot points
- Bold key words and phrases
- Don’t try to fit too much on each page
After Amy produced the book for respite, we decided we’d alter the book slightly to assist staff at BJ’s day program. Feedback has been positive so far.
Remember these books are always a work in progress, it’s good to save the document and change as needed.
For BJ’s privacy we haven’t included all the pages of the books in this blog but hopefully through Amy’s description above you’ll get the idea. This is just a guide to get you started.
ABOUT MY DAY BOOK
Another task Amy worked on was a communication book. It’s always a struggle to get communication which helps us ‘talk’ to BJ about his day. BJ’s day program has a printed book format with boxes to tick but many of the details don’t apply to BJ. So we decided to come up with our own version which we are trialling with both the day service and his respite service.
The front cover tells the staff member why communication and information is important to both us and BJ.
We decided to create an example page to assist new staff in knowing the information which is helpful to us.
We’ve photocopied the blank pages for staff to fill out.
We hope this will guide staff and make it easier for them to succeed in bridging the gap between home and BJ’s days. It’s early days but the signs are very promising.
Since we’ve had NDIS funding for more support, BJ’s weeks have been a lot less predictable and are more varied. This has meant it’s important for BJ to know what’s happening and to have a plan of the week ahead. With AJ and I going away this was more vital than ever because the usual routine was turned on its head. So a schedule was devised with Velcro so activities and arrangements could be switched in and out as needed. BJ checks it each morning and evening and has really enjoyed having the visual reminders of what’s going on.
We also add who is picking him up each day as it changes often.
COUNTDOWN TO RETURN OF FAMILY MEMBERS CALENDAR
BJ loves his family and hates anyone being away. He arrives home in the afternoon and immediately looks for whoever has been missing. We felt a visual schedule for these times may help with the countdown to their return. It was good for when AJ was at school camp, when Hubby goes away for work and for when AJ and I recently went on our trip.
We put a photo of who is away in the top left corner, daily reminders they are away and then a picture of BJ with whoever has been away to signify reuniting. We chose to make one that BJ could pull off a picture a day to give him something tangible. Like the books, it’s worked well so far.
A big thanks to Amy for understanding my scribbled notes, enlarging upon my ideas and bringing it all to life.
If you’ve got a great idea for assisting with communication, we’d love to hear about it.
Edit – Jennifer over on our HWWT Facebook page has shared a great tip which I have permission to share here –
“We have found that with the first NDIS plan, a new routine and new carers means new and improved two way communication is required.
We have discovered a couple of very useful tools –
The Otto weekly planner from Officeworks is a sticky note to help remind our PWD about the new NDIS routine.
And our carers are using the Day One journal app to create a daily visual journal of activities and memories.
Both things have helped us capture and celebrate all the wonderful new experiences flowing from the NDIS!