We at the DayCape team got the chance to interview autism parent Elisabeth, mother of two children, a boy with autism, ADHD and a girl with ADHD and autism tendency, to understand the struggles they are dealing with in their everyday life.
We brought along Karl, who is a psychologist student, to see if he could acknowledge any different sides of Elisabeth’s story.
Elisabeth works as a housecleaner, but her own house is far from the cleaning standard she provides for her customers. She spends most of her time on her two children, who need a lot of attention and help in their everyday life, so she has little time left over for household chores or any other activities. The days can be chaotic, and she often feels like there is not enough time to do the things she wants to do. The household chores come last.
One thing that is time-consuming is the constant reminders that her children need. If they are not reminded to do the basic things they have to do in the day, like get dressed, eat, go to the bathroom, they tend to get stuck playing games on their phones or iPads, and nothing gets done. Just the other morning, Elisabeth tells us, she got stuck on a phone call and wasn’t able to help her daughter to get dressed. As a result, getting dressed took an hour and a half.
In school the days are very structured and the days look pretty much the same and follows a schedule that Elisabeth can go trough with her kids every morning before school. But to prevent sudden changes in the schedule Elisabeth calls the school a few times a week to check if there is anything special happening. It is very important to plan ahead and that the kids know what their day will look like.
At the moment the family uses a few different tools to help with the planning and structure.
They use a timer, because managing time is often a problem for people with autism. It is hard for them to guess how long different activities will take. In Elisabeth’s family the timer helps a lot. For example, when Elisabeth is going shopping and the son is staying home, the timer can help him to see how long Elisabeth will be gone, and he can remain calm while she is away.
They also have a big whiteboard where they put up their schedule for each day.
They use pictures to put up on shelves, the picture show the item that suppose to be on the shelf. This easy show where each thing belong.
In the kids school they uses a paper schedule where every day has different colour. Elisabeth thinks that they need to change the whiteboard at home to match the schedule they have in school, because the children have an easier time following the schedule when each day is a different colour.
The problem with the whiteboard schedule, different apps that the family has tried, and other calendars, according to Elisabeth, is that the children can make changes and remove things from the schedules themselves. The schedules Elisabeth has carefully created, balancing the needs, tasks, and personalities of the family, can all of a sudden be gone, or be a mess.
Elisabeths wants to have a scheduling/helping app that she, as a parent, can lock so that the chilren cannot make changes. She also wishes to be able to change the ringtone for the reminders because her children find some ringtones very stressful. Her son is interested in different sounds, alarms and ringtones and at the moment he likes the windows sounds very much so he has installed that on the computer.
The app also needs to have something that makes it easy to see the time periods for each activity, how long time each activity takes.