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Thriving Toby

I started the last post with the intention of writing about Toby, but I got sidetracked. Unlike Rosie, Toby is still at home. In November, much to my relief, he was put in the Clinically Extremely Vulnerable shielding group. He shielded until March when his consultant kindly signed him off school long term until he can be vaccinated or Covid cases subside.

Just like Rosie, being at home has been all positive. Toby has absolutely thrived. He loves the more relaxed routine where he can do work, but then go and swing or play. I love teaching him and being able to work around him. Toby loves school work and he will often initiate a work session in the evening. Some nights we have had to tell him to stop to go to bed! I can’t pretend it’s been easy at times but it’s been incredibly rewarding. Seeing Toby grasp addition, subtraction, telling the time, basic fractions, learn numbers beyond 10, seeing him starting to write etc. has been beyond anything I could have imagined for him.

It’s clear though how having no speech has impacted on every area of Toby’s curriculum and learning. It’s a massive barrier. However we now have the start of speech emerging. We are getting some spontaneous words or signs every day. Toby amazingly gets NO direct speech therapy from the NHS which is incredible for a child who can’t talk. We recently had a speech and language assessment done by the fantastic Gwen Toner at the Down’s Syndrome Association and we are very hopeful that we can get some SLT in Toby’s EHCP this year even if I have to go to tribunal for it. Her assessment was enlightening and she gave me some ideas to work on at home with Toby.

What has also been reassuring is linking up with a mum of a young person with DS. Her son is my inspiration. He lives independently, he had various jobs in his local community; shops for his food; is on Facebook and is a big communicator. Toby loves being with him. His number said that he didn’t start to talk until he was 14, which you absolutely would not believe if you met him. Knowing little things like that gives me hope that things will turn out ok.

Toby has inspired me this year. He’s capable of far more than I ever imagined. School sent home science topic on reflections last week. Rosie and I had no idea how to teach Toby that images are inverted in a mirror, but he just seemed to grasp it instantly and knew to turn around the pictures he had been given. He also grasped colouring in to match the reflection without any help.

For much of the year our curriculum was mainly based on Twinkl Resources, See and Learn, and Shabang Inclusive Learning until recently. However we have now added in the truly awesome Teach Me Too and Maths For Life Programme / The Maths Mum and Clicker. I’m going to write more about each of these in future and try to stay more up to date with this page! At times it’s been difficult to know what to do next with Toby’s learning but with the help of these resources people mentioned above, and some online training courses by Bradford Down Syndrome group on money, time, reading and puberty, I have much better insight into where we need to be heading.

Toby has kept in touch with his class and his three best friends via video calls. He has chat time; makaton singing time and a guitar lesson with his class. Toby loves showing off what he’s done at home. He goes into school one afternoon to do outdoor PE and small group work with his friends.

I think the most difficult part about teaching Toby is the constant need to revise. It’s like constantly walking around a hamster wheel of the same stuff over and over and over again, to keep reinforcing and getting information into long term memory, so that it’s not forgotten. Every now and again you can add on something new or you will extend outwards, but you can’t stop the wheel of revision turning at the same time. Even though we are on numbers past 20 now, we have still gone back and revised numbers 1-10 this week. Every minuscule bit of fluency and nanosecond gained in memory recall, will allow help somewhere else. It’s just like how older children practise times tables but at a more basic level.

Thanks to a fantastic 1:1 with the Maths For Life aka the Maths Mum last week, I realise that this is typical for all children with Down’s Syndrome - not just Toby. She also emphasised the importance of the child being independent- which if you think about it, is crucial for them to be able to live independently. Toby needs to be supported a lot at present, literally to keep him on task as his eyes wander and he loses concentration and where he was up to. Toby’s lack of speech means his understanding is delayed too; along with his reading. So tasks may need explaining.

Toby is taking part in the Maths for Life Project Baseline to carefully track what Toby can correctly achieve and how he currently needs supporting. We will then work through the Maths for Life programme and see how it helps.

There’s so much I can say about Toby and his learning, but hopefully I’ll update more here in future.

We are starting to think more seriously about which secondary school to move Toby to. There’s no doubt it will be a special school to give Toby the best support. However this year has really taught me to aim high and be aspirational. Toby will achieve what he is capable of, but only if we give him the tools, opportunities and importantly encourage him to do so. Originally published 27.4.2021

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