When you have a child diagnosed with Sotos Syndrome it can be hard to know what is right for them school wise. There may be several options to choose from and they will range in terms of academic and emotional supports and how inclusive each setting is. What is right for one child may differ to another depending on how Sotos Syndrome presents for them. Some children struggle more with behaviour/emotional regulation and others struggle more with academics, some both. Some thrive in mainstream and some need a lot more support in a special educational setting. We wanted to share a few stories in this blog series to illustrate the range of experiences and share advice from those parents on the road already and what they have learnt so far.

Today we ‘Google Met’ with Debbie, who is the mum of Kirsty who lives in NSW, who has Sotos Syndrome, and she shares her experience of school with Kirsty in this Q+A.

Q: Tell us a bit about Kirsty, from your perspective.

Debbie: Kirsty was 4.8kg birth weight and bottle fed and had some sucking issues. Years later at 33 years old she lives independently in a group home. She started talking around 3.5-4. She was always very shy and always very social, and she has ASD tendencies. She had the physical characteristics of Sotos Syndrome. She was in a support unit, in a mainstream school and she learnt to read and write. So those things were on track. Her comprehension was not as good as her reading level. She has a mild-moderate intellectual delay, and she reads at a 10-year-old level. She has a fantastic memory and very good at spelling! As an adult she is 193cm/6’4 now.

Q: Tell us about primary school for Kirsty

Debbie: She did well in her primary school in her support class, learning to read and write. It was a public school, and it was excellent and the support around her social well-being was excellent and the children were well integrated. They did things like the Easter hat parade and all other school activities together. We looked at what was available in the area we lived, proximity and what was in the area. It was the early 90’s and there were not a lot of options back then. We had a catholic private school, and we had the public school, which came highly recommended, so when we saw them, we thought they were a great fit for Kirsty. There wasn’t really the trend of mainstream with an aide, but we were always pushing her through her own goals and the teachers were incredibly supportive.

Things were different back then and if you didn’t have Down Syndrome, you had to fill in a lot of paperwork and get evidence.

Q: Tell us about high school for Kirsty

Debbie: Our local public high school had a support unit, but the reputation of that school was not so good and there were instances of bullying I was worried about. So, we took her to a private special needs school, kindergarten-year 12. After a year, the focus was on mild or physical disabilities and she didn’t quite fit. She was showing us she wasn’t very happy. We persevered another year but socially we could feel her going backwards – she could see if she acted out, people would respond.  The teachers would lock her in time-out, in a blue room, when she was naughty, but she liked it there, so would manipulate them. They were addressing her academic needs but not her behaviors, so it didn’t fit. Then she went to a public special needs school. It was Kindergarden-year 12 and she excelled in leaps and bounds as they addressed her social, well-being, understood her behaviours and therefore she progressed academically.  It was the right fit for her!

Q: What advice do you have for parents

Debbie: We’ve always looked at what is right for Kirsty, not us. Also, what is right for Kirsty at the time, as her need’s change. It is about what is right for her, she will tell us where she feels comfortable! Kirsty doesn’t have any siblings. Kirsty knows she has Sotos Syndrome, we told her around late primary, early high school. She knew she was taller, but it was more that she couldn’t learn things as quickly and her mobility. I explained the reason for some of these things was the Sotos Syndrome. With school, look at what they are offering academically, but also look socially. Keep your options open, ask a lot of questions. What are their policies, how do they manage different situations such as behaviours. Keep an open mind. If the first school isn’t a good fit, be prepared to change – follow your child’s lead if they are not happy.

Thank you, Debbie, we really appreciate your time, sharing your perspective with us. No doubt many will learn a lot from reading this! If anyone else would like to be interviewed for our Sotos Syndrome Association Blog or newsletter, please email us at heather@sotos.org.au

Categories: SchooI advice


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