Twelve-year-old Seth Robinson is a fun, happy kid with a rare set of challenges to deal with. Desperate for support, his family looked in a number of places without any luck. Happily, they turned to Satan’s Little Helper and found the answer they were looking for – ‘yes, we would love to help you!’
Seth is the oldest of four siblings and, like many kids, loves to spend time outdoors with his family or playing on the Xbox. Unlike most kids, though, Seth has a rare condition called Usher Syndrome, which means that he’s slowly losing his sight and hearing – and that isn’t the only issue he’s dealing with. “We’re not sure how long it will take but we do know he is going to go both blind and deaf,” says his mum Kerryn. Without special assistance at school, Kerryn was concerned that Seth would fall between the cracks and not receive the support he needs to be able to communicate before he loses his hearing and vision. As a child, Seth was diagnosed with Pervasive Development Disorder (PDD-NOS), which has since been classified as an Autism Spectrum Disorder (ASD). Without a formal assessment or an official ASD diagnosis, the school was unable to access a teacher aide. “What we really needed for him was someone that could come in and do an assessment to see what support Seth needs,” says Kerryn. “Everyone thinks labels are a bad thing – they’re not. The right labels open doors to support.” Due to his complex needs, it was difficult to find a specialist who would agree to complete an assessment. As well as Usher Syndrome, he has ADHD, Executive Functioning Disorder, Dyspraxia and Sensory Processing Disorder. When Kerryn did finally find a specialist who agreed to assess Seth, the cost was out of reach. After exhausting all the funding options Kerryn could think of, her aunt suggested applying to Satan’s Little Helper. After experiencing a lot of roadblocks on her journey for help, Kerryn expected to be told no. Satan’s Little Helper steps up!
“When I got the phone call to say ‘we’d love to help’, it was lifechanging,” says Kerryn. “It meant I could finally relax, knowing my kid might actually get some help.” While the assessment did not provide Kerryn with the clarity she was hoping for around an ASD diagnosis, the specialist’s report has helped to get the ball rolling for support for Seth. His school is now in touch with the Ministry of Education to apply for funding for a teacher aide, and they are quietly confident that the report gives them a good chance of getting it. Beyond schooling, Kerryn also sees the long-term impact of this assessment. “If anything were to happen to me, the chances are he will now qualify for assisted living, whereas previously he would not. He would have had to grow up and age out of the system and learn how to function on his own,” she says. “He deserves the right to be supported in society and we’re really grateful for the support that Satan’s Little Helper has shown. As a parent, all you want for your kids is for them to live their best life, and Satan’s Little Helper has made it a little better.” Satan’s Little Helper was set up in 2015 to help kids going through a tough time. “We have been able to help out in all sorts of challenging situations, just making a small difference in the lives of these kids and their families,” says an SLH spokesperson. “Every now and then, stories like Seth’s come to our attention and we are truly humbled to be in a position to be able to do something to help. That is exactly what Satan’s Little Helper is here for!”
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