JAELI AND DALI'S CHALLENGE
Jaeli, eight years old, and Dali, six years old, are sisters with a rare genetic mutation in SYNGAP1, an essential synaptic protein in the brain. Mutations to this gene result in intellectual disability and epilepsy. The sisters were the first to be diagnosed with this condition in Australia. So far only 250 people have been diagnosed worldwide though it is thought that this gene mutation may be diagnosed in many others with non-syndromic intellectual disability in the future. As a result of this genetic mutation, Jaeli and Dali both experience a number of conditions including epilepsy (partly controlled with medication, but still having frequent absence seizures), autism spectrum disorder (each girl with distinct sensory preferences and repetitive behaviours), ataxia (reduced motor coordination), pica (in their case putting small objects in their mouths with the inherent risk of choking), and insomnia (early morning waking between 4-5 am). They need near constant attention and caregiving. Our need knowers are also Danielle and Dan, their loving, well humoured, endlessly giving and vigilant parents. The girls morning behaviours of waking early, climbing into bed with their parents, moving about, and turning up their iPad volume have led to parental exhaustion/carers fatigue.
Danielle and Dan want a solution that allows both girls to safely and independently entertain themselves in the early hours of the morning and avoid getting into their parent's bed and waking them up. Each girl needs her own solution as they have specific behaviour patterns, sensory preferences and usually play separately and are known to fight and bite occasionally when together. By achieving this challenge it will also allow Danielle and Danny to get more sleep and reduce carers stress. The parents are used to closely watching the girls and the solution needs to provide them the opportunity to monitor the girls remotely. They would like there to be an educational component to the solution and engage the girls in other activities besides using their iPads. Ideally the girls would reestablish sleep but this was not an expected outcome.
The team made two hexagon-shaped sensory play pods to furnish Jaeli and Dali's bedrooms, each customized to the girls' specific needs and providing a fun and safe play space for the girls in the morning. The robust pods are built from CNC-cut modular interlocking plywood, lined with acoustic and engineering felt and lit with remote controlled integrated coloured LED floor lighting. The pods aim to engage and entertain the girls through easily interchangeable and upgradeable sensory panels and are centered around a tethered iPad dock on a flexible mount, preventing the girls from taking their iPads into their parents' bedroom, as is their current behaviour, and enabling them to interact with their iPad in a comfortable space. The environment provides a range of hands-on activities beyond the iPad interface. The current array of sensory panels include an infinity mirror, textured walls, a puzzle maze, hinges/locks/clasps board, an educational alphabet board using magnetic beads and with laser engraved personalized words. There is also a touch panel triggering a circle of LED lights together with an integrated iPad charger and a video WiFi monitoring system built in that connects to an app. The motion triggered camera can notify Danielle and Dan and enable them to see and hear the girls without having to leave the comfort of their bed. The soft felt lining is adorned with an abundance of colourful shapes and favorite costumes attached by Velcro that encourage free creative play. The parents said that they love it, but most importantly, the girls love it! And with its inherent flexibility, the pods can be adapted to any child's developmental stage and sensory preferences making it a great solution for children of all abilities.