DV digital diaries replaced traditional paper-based end of year reports for some students at Whangarei’s Blomfield Special School and Resource Centre, and the response of parents to the new medium of report delivery was unprecedented and unexpected.
“The parents were overwhelmingly positive,” says Jan Ogle who was recently appointed in the newly created role of parent liaison for the school.
As a former special needs teacher at the school, Jan understands that the parents of special needs children often feel isolated, defensive and stressed, and worry a lot about the long-term future for their child. Any extra tool designed to help their child, such as the digital diaries, is welcomed.
“They’ve (the diaries) been very enabling for the parents… It’s the subtleties that the digital diaries pick up that cannot always necessarily be communicated,” says Jan.
Project DISE is a three-year pilot funded by the Ministry of Education’s Digital Opportunities Projects, and is trialling various digital technologies to help children with special needs. Eleven students were chosen to participate in the making of CV-style digital diaries. Students were filmed once a term to show their physical progress with their individual education plan (IEP) goal. IEP goals are tailored to each student and set annually, and may include such things as learning to tie a shoe lace or sit unassisted. Students were also filmed on outings or while playing.
For Louisa Harris*, the diary has become a source of comfort and validation of her severely handicapped daughter’s life. Maria* is blind, cannot speak, needs support to sit up, moves with the aid of a walker, and requires 24-hour care. Over the years family support for Maria has dwindled, and Louisa has increasingly borne the burden of caring and supporting Maria alone. Louisa says her family is not uncaring of Maria but with her numerous disabilities, hospitalisations, and demands on family time and life, her siblings and father became disillusioned with Maria's condition, doubted the quality and worth of Maria's life. Slowly they withdrew from her.
“Her brothers and sisters viewed the digital diary and were surprised at what Maria could do,” says Louisa.
More importantly for Louisa, the family began to understand the worth and enjoyment that 20-year-old Maria got from life, and viewed her as human again, something Louisa says no written report would have been able to convey. Consequently, family members are considering the possibility of taking Maria for outings.
School board trustee member Dezirèe Taylor’s autistic son James was also part of the pilot into digital diaries. On a bad day with James, Dezirèe says it is easy to overlook or forget any progress he had made, and feelings of hopelessness can easily surface. But for Dezirèe, her husband and family, the digital diary is a reminder of just how far James has come in a year.
“We can see the huge steps he made last year…It’s a relief to see he’s making an improvement as sometimes it appears he isn’t. It’s horrible and you get down on yourself… now you’ve got this digital diary and it’s blaringly obvious he is making improvements,” says Dezirèe.
For a mother who aspires to seeing her son attend university, Dezirèe does not want to see a return to written reports, which she describes as “two dimensional” and fail to open up wider dialogue between the school and home. She wants all students at the school to have a digital diary.
Project facilitator and IT teacher, Brian Baynham, says the emotional impact of the diaries has taken the five-person project team by surprise, but with the evolutionary nature of the project, it was quickly realised that the project could not work in isolation of the parents, thus the appointment of Jan.
“The complexity and scope of the project is constantly changing…when we applied for the funding for this project it was done on the basis to help the kids. We hadn’t anticipated how it would help the families,” says Brian.
The digital diaries have proven useful in providing continuity between home and school. One student’s keen-eyed parents picked up that the keys their son used to communicate such things as ‘yes’ and ‘no’ differed between home and school. Accordingly, his keystroke responses at school were changed to match his ones at home. Something as simple but important as different keystrokes Brian says would have gone unnoticed or not thought of in written and verbal reports.
Visual strategies for parents and caregivers to deal with their child’s anti-social or aggressive behaviour are also outlined on the digital diary. One mother told Jan that having the digital diary showing how school staff de-escalated her autistic son’s aggressive behaviour had given her hope for her and her son.
“Parents are fearful that they are supporting the continuance of bad behaviour rather than decreasing it. We give them visual strategies they can use that are the same for home and school,” says Jan.
Louisa Harris has also found the diary useful tool for Maria's revolving army of caregivers. The diary shows how Maria should be lifted and placed into her walker. It also shows Maria's facial expressions and sounds she makes to communicate, saving Lousia a lot of explaining and angst.
“You’re always worrying that you’ve forgotten to tell them something. It’s easier with the diary,” says Louisa.
Jan describes the diaries as “user friendly” and “positive and empowering.” Open dialogue between parents and staff has always been welcomed, and is nothing new to the school, but the digital diaries seems to have taken the want for communication to a whole new level. Parents want their child to be part of Project DISE, and are making suggestions like filming in the home environment as well, or the release of a mid-term DVD. They’re ideas the project team are open to but with limited financial and technological resources, the logistics would take some working out.
“The potential for this project is brilliant. We’ve got to see our idea work here and then spread it out,” says Brian.
This year, 18 out of the school’s 75 students will be part of Project DISE, with 12 students taking part in digital diaries. The remaining students will be involved with the making of desensitisation and socialisation DVDs , which are made specifically for individual students, and aim to improve their negative social behaviours.
The Project DISE team of Brian; Jan; Principal, Bev Topia; Deputy Principal, Sally Wilkinson, and technician Michele Flood, say the making of the digital diaries is hard work but very rewarding. In future they hope all students are able to have one, and they’re in no doubt the parents would support the move.
*Names have been changed to protect identities.
