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 Nanette (Zac’s Nanna) and ShanteI (Zac’s Mum) who live in NSW. Zac is 15 and has a Syndrome similar to Sotos, and they share their experience of school with Zac in this Q+A.
Q: Tell us a bit about Zac, from your perspective.
ShanteI and Nanette: He is my BFG – big friendly giant. 115kg, 6’3 size 15 shoes. He’s a gentle soul. He won’t eat things with colour in it. He’s very stubborn. If he doesn’t want to do something, he won’t. He was born 38 weeks by C-section, born with low blood sugar, tube fed 3-4 days, after a week we brought him back from the hospital and he was ok, until he didn’t meet his milestones. He sat up late, he crawled late etc. He had a bigger head size. By 3 we started looking into it more and at 4.5 we saw a Dr who thought it might be Sotos Syndrome and the geneticist confirmed he probably does have it. (He has since been tested and doesn’t have the NSD1 change, so instead must have a Sotos-like condition). He had ASD tendencies when he was younger, but seems to have grown out of that. He had sensitivities to noise when younger but now is ok. He has had some impulsive tendencies and can’t control his emotions well, but if he goes to his room and gets time out he is much better. Things have gotten much better now he’s older behaviour wise.
Q: Tell us about primary school for Zac
ShanteI and Nanette: He attended his local public mainstream school years Kindy, 1 and 2 with 5 hours support a week, which wasn’t enough. Then we got a placement in a support unit. He would learn something and then find it hard to retain that information. When we first started school, l wanted to try him out mainstream first to see how he would cope. I wish now that I hadn’t as I wish I had started him in a support unit the full way, he may have progressed more. He wasn’t accepted into a support unit at that early stage though. He was very delayed vocally; articulation was an issue and the teachers didn’t quite understand him. He was getting speech therapy and OT, mainly self-funded, as he didn’t fit the criteria and we have only had the NDIS here the last 3 years.
Q: Tell us about high school for Zac
ShanteI and Nanette: He is now in a support unit inside a mainstream high school. It is not a local one. We got an out of area school, as that is where they had a place for him. He is supported there. He is one of 8 kids in his class. Zac has a short attention span and if he doesn’t want to do something, he won’t do it. He does not like doing schoolwork. Doing home schooling has been a real struggle. He has struggled with friendships at school. He hangs out in a group but does not have one on one friendships. Note to parents, when they turn 12 there is no vacation care, we tried it with a disability provider and the children were too loud so that didn’t work well.
Q: What advice do you have for parents
ShanteI and Nanette: Be patient and aware of their limitations. You need the right supports behind you first. He was in a good childcare environment and the day care provider helped us with getting the right school. The mainstream school helped us get him into the right support unit, and the right school helped us get him into the best high school. He will go to year 12 and then the school will help as we move him into his next phase of his life. We all work full time in this house, so we need that stability of him at school till Year 12.
Thank you, ShanteI and Nanette, we really appreciate both 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 firstname.lastname@example.org