Nayia starts school with a smile

Back to blog4 months ago by Renee
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Five year old Nayia in her school uniform, with her school backpack, wearing her pink AFO on her right wrist.
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When five-year-old Nayia woke up on the morning of her first day at school, she sat up in bed crying. “I don’t want to go to school,” she said. “I’m scared.”

“That broke my heart,” said Nayia’s mum, Niki. But thanks to the support of Cerebral Palsy Alliance therapists and staff, Nayia was well prepared and those anxieties quickly slipped away.

When Nayia was twelve months old, she was diagnosed with cerebral palsy hemiplegia affecting the right side of her body, particularly her right arm. Occupational therapy, physiotherapy, and regular check-ups at Cerebral Palsy Alliance Penshurst site became a regular part of the family routine, with the team supporting Nayia in developing fine motor skills and preventing atrophy.

For Niki, a self-confessed medical illiterate, the maze of technical terms proved somewhat daunting. It wasn’t until she engaged with the Cerebral Palsy Alliance that she found people who would explain things to her in practical terms she could understand. As the milestone of starting school began to get nearer, Niki naturally turned to her support team at Cerebral Palsy Alliance to prepare them for this big day.

Niki biggest concerns focused on what Nayia might be asked to do, and whether she’d be able to do it, and how well she’d be able to adapt to an unfamiliar environment and shared them with the team. On top of all this, Niki was began to worry that the other kids might tease her, that the staff might not know how to provide support, as well as a whole range of other issues.

“Basically, I was panicking,” said Niki, “but the Cerebral Palsy Alliance really calmed my fears and in the end none of my fears came true.”

To prepare Nayia for her big day, Cerebral Palsy Alliance helped with her physical independence as well as preparing the school for her arrival. Nayia’s Occupational Therapist Susanna Cahill began by building a program to support Nayia in learning to do the range of activities her school mates would be doing. Nayia took this home and practiced various ways to independently tie up her hair, dress herself, and do up her shoelaces.

“Tying up shoelaces is tough for any five-year-old,” said Niki, “but it’s even tougher with CP.” Niki was very impressed with Susanna, both for her clever variety of physical strategies, as well as the rapport she’s built with Nayia.

“Nayia’s a cheeky one, and she’ll try to get out of things if she can. It’s great to have someone who really cares, like Susanna.”

Susanna created priorities for Nayia, focusing on wrist, hand and shoulder strengthening, working on buttons and small bilateral tasks like her laces.

“For me it was about making it fun for her, putting stickers on the wall to touch for her wrist extensions, choosing fun toys or ones that sparkle. She is showing great skills with small buttons, tying shoelaces and putting her hair up. When I did sessions at home we also worked on her table top skills.

“Working with Nayia has been a joy,” Susanna said.

As well as developing key physical skills, there was also the challenge presented by the school environment. Cerebral Palsy Alliance Early Intervention Teacher Kylie Barber accompanied the family on two site visits before the start of term. This allowed them to identify risks and hazards and, just as importantly, ensure that Nayia’s first day would be in an environment she was already familiar. They did everything from checking whether Nayia would be able to use the desks and chairs, right through to the school’s water bubblers was tested and appraised. “As a parent, that’s stuff I never would have thought of,” Niki said.

Cerebral Palsy Alliance staff also met with the teachers, both before and after the start of term, educating them with regard to Nayia’s CP, as well as clarifying the kinds of support she would most need, a crucial step in providing reassurance to both parents and teachers alike.

Even with all this preparation, Niki says that on the actual day she was “a mess.” The usual emotions around leaving a child at school were alleviated, thanks to the Cerebral Palsy Alliance support. For Niki, knowing that Nayia was stepping into an environment she knew and was prepared for, she was confident in both Nayia’s ability to fend for herself, and to find support if she needed it.

Once they got to the playground, Nayia found some of her friends from day care and the meeting turned into a bit of a fashion show as they paraded and compared their new uniforms and gigantic backpacks. From there to the classroom, where she left Nayia happily colouring in, and the first day jitters were over.

“There were no tears from either mum or daughter, I’m very proud to say,” Niki told us.

 When asked about her goals for the future, Niki said it was all about helping Nayia to feel included. “I never want her to feel there’s anything she can’t do.”

Continuing work on building strength and co-ordination in Nayia’s right arm is also a priority. Nayia currently wears a supportive glove, which her mum would love for her to no longer need. “We’ve tried to make it fun, make it hot pink and decorate it,” she said, but the fact remains that it makes her stand out.

The ongoing support and services she accesses through the Cerebral Palsy Alliance make her hopeful for the future. “We’re super grateful,” says Niki. “I haven’t got a negative word to say – from the therapists to the admin staff, it’s all been above and beyond.”

Susanna said that the family had been supportive of the process and all recommendations.

“It’s a pleasure to work in such a collaborative environment with Nayia and her parents, where we work as a team to support and maximise Nayia’s skills in all of her environments.”

Is your child starting school next year? It’s never too early to start preparing and we are here to help you every step of the way. Contact one of our friendly team to find out how we can help your child be equipped for their first day of school.