Archie: My First Year

Starting school can be a nerve-racking time for any parent but with Archie’s complex needs, his mum Gemma was especially worried about how he would cope in the new setting.

“I was beside myself…I found it difficult to trust other people with him” - Gemma, Archie’s Mum

Archie (aged 6) is a determined, inquisitive and competitive young boy. Archie also happens to have complex physical disabilities and health needs. He has a diagnosis of the rare Pompe Disease, severe neuromuscular weakness and uses a ventilator. The only movement he has is very little in his hands. He lives at home with his parents and has nursing care overnight, seven days a week.

Up until he was 5 years old, Archie was spending his time between home and the hospital. As a young boy, he got bored easily and his parents often found it difficult to entertain him.

“He’s less frustrated at home because he’s stimulated at school” - Izzi, Teaching Assistant at Chailey Heritage School

Archie has more opportunity for activities than he could have ever hoped for at home. With switches, hydrotherapy (swimming), musical instruments, rebound (trampoline) therapy and powered wheelchair driving to name a few, Chailey Heritage School provides stimulation for Archie throughout the day.

“Coming to school has dramatically changed our lives” - Gemma, Archie’s Mum

Since joining Chailey Heritage School in November 2016, Archie has thrived in a number of areas. Before coming here, communicating with Archie required his mum to be there to interpret his facial expressions. Working with the staff, Archie has been able to develop a yes/no response, which enables him to clearly make his own choices.

Using BIGmack (a message recording device operated by button) and Eye Gaze technology (using the mouse by tracking eye movement), Archie has been able to express himself more and communicate with his peers. Before Chailey Heritage School, Archie spent the majority of his time with his mum and didn’t have the chance to be around people his own age. Now, he thoroughly enjoys ‘Hello time’ when class meets in the mornings and even rocks his hand to say hello to his classmates.

As well as this, Archie has been using Chailey Communication System (CCS) to help with his interactions. The CCS is a symbol communication book which has 16 categories, each with a number of subcategories and potentially an unlimited number of vocabulary items. CCS provides huge flexibility and it enables Archie to express single words, short phrases and complex novel phrases. He has even begun putting short stories together!

“Archie has progressed in so many ways” - Amy, Teacher

On top of being able to communicate for the first time, Archie has excelled in powered wheelchair driving. Using switches (one under his foot for acceleration and two by his hands for steering), Archie has been able to move independently for the first time in his life.

“It’s lovely to see his potential” - Gemma, Archie’s Mum

Coming to Chailey Heritage School has opened up so many opportunities for Archie and has, ultimately, changed his life. We want to continue helping Archie through his education and look forward to seeing more fantastic achievements from him in the future!

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