Thriving with CDKL5: Summer’s education journey

Summer is one of only 10 tamariki in Aotearoa New Zealand living with CDKL5.

Summer is one of 10 tamariki in Aotearoa New Zealand living with CDKL5, a rare neurological condition she was born with. Despite this, she radiates a brightness that perfectly matches her name.

Her condition means she started having seizures as an infant and has developmental and motor delays. Because of this, Summer’s mum, Anna Brooker, thought she would never go to school.

But despite the odds, Summer joined the Champion Centre, an early intervention service for young children with disabilities, in Ōtautahi Christchurch at eight months old. After six months she moved to Conductive Education, a programme specifically developed to enhance quality of life for people with motor disorders. When Summer turned five, she transitioned to primary school, a Conductive Education satellite class at Addington Te Kura Taumatua.

“The Champion Centre was amazing and a really good support for me. I met a lot of other amazing mums and children there. We moved Summer to Conductive Education where it’s more focused on the physical aspects and getting the child to move their own body to achieve things in daily life.”

Comprehensive care

Conductive Education is based on the theory that, in spite of significant damage, the brain has a vast capacity capable of modifying its connections or re-wiring itself. It teaches people with motor disorders to coordinate their movements and have more independence and self-confidence in their everyday lives.

Through Conductive Education, Summer has a team of highly trained ‘conductors’, as well as specialists in speech and language therapy, physical therapy, and occupational therapy.

“Summer’s speech and language therapist works on feeding and communication,” says Anna.

“She emails me and asks me things about what I’m doing with Summer. They work really hard with Summer on her feeding, which is great, because I spend a lot of time working on this at home and it gets really upsetting when you’re not seeing any results. They do that at school and it’s that repetition of doing it every day that really helps.”

Summer first attended the Conductive Education early childhood centre in Addington, which is on the same grounds as Addington Te Kura Taumatua.

“A lot of the staff already knew Summer, so it was the most seamless transition ever,” explains Anna. “Because I knew the staff, I was comfortable with them, and Summer did visits.

“She just went straight from the preschool to school full time with no problem. I think we’re incredibly lucky that we got the opportunity for her to go to the Conductive Education unit, because they can only take a limited number of children.

“I talked to the other mums about it, and we agree we’re so lucky that we drop them off, we can leave, and we don’t have to worry about them. Everything is taken care of, for example, they take care of students if they have a seizure. If they vomit, they change and bath them – they do everything.”

Anna continues to sing the school’s praises.

Summer loves going to school, says mum Anna.

“The school is all set up,” she says. “They’ve got the sensory room, if students are getting overwhelmed, they can go in there. Summer loves the sensory room with its shiny lights.”

“The bathroom facilities are amazing with baths and showers as well. Then they have all the equipment to do her Conductive Education work. They adapt the curriculum and translate it into a way that their students can enjoy it.

“A lot of it is sensory; what they do with the kids blows me away. Summer loves going to school. She gets there and gets excited. She knows she’s at school and she’s going to have a great day.”

When talking about how Conductive Education helps Summer with her learning, Anna describes how the kaiako split ākonga into two groups after they’ve had their morning welcome.

“And then they do sensory learning. There’s music, dancing, and lots of light and colours. They really do make it a fun experience for the students.”

Encouraging inclusivity

Anna has plenty of ideas to encourage other schools to be more inclusive, such as educating students and teachers that it is perfectly acceptable and normal to have children like Summer around.

“I’ve had to do this with our youngest,” she explains. “Growing up he couldn’t figure out Summer and it’s just been educating him that Summer is a little bit different to us. She can’t verbally tell us what she wants and how she feels.

“So we have to anticipate, we have to think ‘what would Summer like?’ We have to offer her things and include her. He’s gotten really good at it. Now, he’ll go and take her things. He’ll tell me if Summer’s not happy or Summer doesn’t want to do that.

“We find a lot of times when we go somewhere that children are genuinely interested in Summer and watch her. Parents say, ‘don’t stare’, but instead of saying that, why not tell your children to go and say hello?

“It makes sense that they’re interested because she’s in a wheelchair and she’s loud.”

Conductive Education teaches people with motor disorders to coordinate their movements and have more independence.

A bright future

Anna has great hopes for Summer going forward.

“I want her to keep enjoying school and learning,” she says. “She can stay at Conductive Education a little bit longer. I hope she continues to stay at school full time, and that her health allows that. I hope she just keeps thriving.

“The school is great at giving students the opportunity to try new things. Sometimes you can get very stuck in your routine, but the fact that they’re there sharing all these things with her makes me happy.

“I can’t wait to see what she can do, to see her potential, because it really is about giving her the opportunity to do things.”

Learn more about Conductive Education(external link) on the website.