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“To my younger self” – a message from Saskia with Sotos Syndrome

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Saskia Morgan, like many 13-year-old girls, enjoys playing netball, horse-riding and hanging with her friends. Saskia is an outgoing teenager who has many hobbies, despite some of the difficulties she has faced living with a rare genetic disorder.

 

The early years

Saskia’s early years were challenging for her family. She was diagnosed with a rare genetic disorder called Sotos Syndrome, and her parents, Amy and Howie, were told she wouldn’t be able to speak or walk.

The news led to Saskia’s parents starting her therapy journey early

Saskia attended multiple therapy specialists for her specific needs, including speech therapy, physiotherapy and occupational therapy. These sessions helped Saskia with her language development and independence in everyday tasks.

“There’s a lot of other kids in the world with Sotos that can’t talk or walk, but Mum and Dad got onto it early,” says Saskia.

What specific challenges do children with Sotos Syndrome face?

Sotos Syndrome presents itself with many signs including “excessive physical growth during the first years of life” (Sotos Syndrome Australiasa, 2020).

This can also be accompanied by:

  • Delayed motor cognitive and social development
  • Difficulty with reasoning, problem-solving and nonverbal communication
  • Strengths with talking, however, face difficulties using the right language at the correct time and context.

Children with Sotos can face difficulties understanding the perspectives of others, reasoning abilities and comprehending non-verbal communication skills.

These boundaries can make it hard for many to initiate and maintain friendships, socialise at school, home and in the community.

Saskia’s therapy journey

In recent years Saskia has attended Occupational Therapy and Speech Therapy at Kites Children’s Therapy. Her progress with Occupational Therapist Clare and Speech Pathologist Sharon has allowed her to improve her social communication and self-regulation skills.

Saskia’s therapy journey with Sharon has laid out the foundations to a greater understanding of social cues, conversation strategies, and self-regulation, in a supportive environment.

As a Speech Pathologist, Sharon assists Saskia in improving her communication skills with techniques like turn-taking.

“Speech pathology has assisted Saskia to understand how she may be feeling. She is able to better identify appropriate language to describe her experiences and express her thoughts and feeling.

‘’You can develop greater confidence with your speech over time,’’ explains Sharon.

‘’It’s a privilege when I am part of that journey and they put their trust in me and become empowered among other people, their friends and family,” she adds.

With assistance from Kites Occupational Therapist Clare, Saskia has also been working on increasing her independence in activities of daily life, ranging from school, hobbies and home.

One of Saskia’s milestones was reading, following and completing a Chocolate cake recipe by herself. We hear the delicious chocolate cake was a big success!

During the COVID-19 lockdown in Western Australia, Saskia’s family requested online therapy sessions through Kites’ Online Therapy Services. This allowed Saskia to continue working on her therapy goals and sustain personal support from Sharon and Clare.

Today, Saskia attends a combination of online and face-to-face sessions to work within her busy schedule.

Like many teenagers with Sotos Syndrome, Saskia has faced challenges and tough times. Saskia’s work with Kites’ therapists has helped her to make amazing progress with self-regulation and developing friendships. We hope to continue our relationship with Saskia and her family as long as they need.

When she no longer needs therapy services, our therapist Sharon’s response will be: “Awesome, skills for life – literally!”

How we can help

Kites Children’s Therapy, based in Victoria Park in Perth and Hobart in Tasmania, has a range of therapies to support children with disability, including rare genetic disorders, developmental delay, and their families.

We offer Dietetics, Dog-Assisted Therapy, Exercise Physiology, Occupational Therapy, Physiotherapy, Psychology, Social Work and Speech Pathology.

Kites motto is ‘every child, any challenge’, and we support children with any challenge they face. From intensive therapy programs across a number of areas, to kids who just need a little bit of extra support.

To my younger self – Saskia’s advice

Saskia has worked hard at her hobbies, even winning competitions in netball and swimming. “They told my mum and dad I wouldn’t be able to do any of that,” she says.

“When it’s hard and tough and you feel like you’re not achieving something,” Saskia explains.

“Just keep going with it, because one day your kids will get it and you’ll be happy when they do.”

“I feel pretty proud of what I’ve achieved. No one said I could do the things I [can do] today,” says Saskia.

To find out more about our services, contact us today. If you’re ready to get started, make a referral now.