Jacqui
“I felt lost, honestly. I think there’s almost a grieving process that parents go through when you realise your child or children’s lives aren’t going to follow that ‘usual’ path. We imagine our kids will be healthy and happy and when that isn’t the case, it’s hard to come to terms with I think.”
Jacqui has travelled a road most of us could not easily comprehend. A single mother of four children, she has supported her family as they have all been diagnosed with a range of disabilities, including Jacqui herself. Like so many parents and caregivers in this situation, Jacqui was overwhelmed by the complex processes involved in finding a way through their situation and seeking the support she needed. Luckily, she was introduced to CCS Disability Action.
We all want our children to be happy and healthy and when they do not follow what we see as the ‘usual’ path, it’s hard to see a positive future for them. But with the right support, everyone can be happy and fulfilled. And for people like Jacqui and her son Zane – once able to thrive, the sky is the limit.
Jacqui’s family
Jacqui, a single mum-of-four was living in Alexandra when her oldest son Zane was diagnosed with autism and a learning disability, her third eldest son was also experiencing ongoing medical issues and her youngest son Hayden, stopped meeting 'typical' developmental milestones. He would later receive the same diagnosis as Zane.
And just like that, each day was suddenly a constant whirlwind of stress and struggle. “I didn’t really know who to turn to, or what to do. I approached CCS Disability Action, and they were so friendly and helpful. I was struggling and they patiently helped me work through everything I needed to find a way forward.”
As well as providing a sounding board to help Jacqui adjust to a different path for her sons, the Alexandra team provided information about the financial, educational and peer support that was locally available.
Jacqui decided to move to Oamaru for more affordable housing and was introduced to the Waitaki branch team once there. Jacqui began to sense that her daughter Tayla may also need some support after she began experiencing medical complications caused by her Tourette’s syndrome – something the family had been able to manage until then. Shortly after this Jacqui also sought an OCD diagnosis for herself, with the result that she and all her children were confirmed as having a variety of medical conditions and disabilities.
CCS Disability Action, in Jacqui’s words, went “over and above” to get them through this exceedingly difficult period.
Jacqui specifically needed an advocate to sit with her at a dizzying array of meetings with medical professionals and agencies to ensure she could communicate her family’s needs in a holistic way.
Zane and Jacqui
The Waitaki branch team and specifically Kay Page, branch Service Manager, were there for the Eggleton family when they needed them, with Jacqui describing them as “a pillar of support.”
The knowledge and kindness shown by the team has given Jacqui some space to be the parent she wants to be for all her kids. She has also come to terms with a life that is different to the one she imagined.
“I’ve changed my perspective on what life ‘should’ look like. The kids are now enjoying life and each is forging their own path. They’re doing well. We have our challenges, but I am so proud of each of my kids. Life is good.”
It is perhaps their contribution to the Waitaki CCS Disability Action Local Advisory Committee, a voluntary governance group that supports the branch, that has allowed both Jacqui and Zane to really shine. Looking for a way to give back to an organisation that has proved so transformational in her own life, Jacqui brought Zane along to a committee meeting “as a mother-son duo,” she says with a laugh.
“When I first started, I felt I had no specific skills. I was just a single mum from Alex. I really doubted that I had anything to give.” But Jacqui found membership of CCS Disability Action’s governance has given both her and Zane a sense of purpose and direction.
When Jacqui was nominated for Committee Chair, Mary O’Brien – who works as an Access Coordinator for CCS Disability Action’s Otago branch – was there to give her the confidence boost she needed. “Mary said: ‘You can do this!’ She has been a real mentor to me and gave me wings. I wouldn’t be here without her.”
Under Jacqui’s leadership the committee has turned their focus to local accessibility issues, including a detailed audit of Mobility Parking spaces in the town – parks that make an incredible difference to the everyday lives of disabled people. Many of the parks in town are badly maintained and poorly positioned. Zane photographed each park – a project well suited to his technical skills and laser-like focus. With help from Mary and others within the access team at CCS Disability Action, the committee used this information to make a submission to local council, arguing for improvements.
Zane was one of a team invited to speak to local councillors about their submission and it’s an experience Jacqui will never forget. “It was amazing to see him standing there in that moment presenting his submission. The councillors were clapping and I felt so incredibly proud.”
The committee has met with the mayor and the council’s roading team on this issue and others and Jacqui is hopeful that they will make a difference. Jacqui now has the confidence to make her own way and is determined to make a difference for others just as she sees that CCS Disability Action has done for her.
