No one plans to have a child with special needs, nor can you predict where the parenting journey will take you. This is certainly the case for Bev, the mother of Clare whose story we shared earlier this year.
There is the constant ebb and flow of your child's needs, dependent on their age, interests and therapeutic care. With the support of the Gunnedah community, Bev has been able to help Clare navigate her changing needs, from a toddler right through to becoming an independent adult.
The journey begins
When Clare was three years old she started experiencing grand mal epileptic seizures, which were very hard to predict or control. These could go for over an hour and would usually end in Clare unconscious and in hospital. Her seizures became worse, increasing from occurring in the morning to waking her at night. They took their toll on her body and she developed a brain injury as a result.
Claire’s childhood involved many trips to Sydney to the Children’s Hospital and Coral Tree Family Services, adjusting medication and attending speech therapists, occupational therapists, behavioural therapists, and psychologists.
"I think our family was very much in a state of grief for quite a few years," Bev said. “It was like living in a nightmare. Clare continued to have seizures and the behavioural difficulties that stemmed from them. It was hard work for us as parents.”
Until she reached Year 5, Clare attended a mainstream Catholic school, when she started learning at a different pace to her peers.
“It was a fantastic school that was able to support Clare extremely well up until that point,” Bev said. “The academic and social difference became more apparent later in primary school, and when an opening became available at the GS Kidd Memorial School we took the opportunity.”
A community of support
GS Kidd Memorial School caters for students from Kindergarten to Year 12 with a range of needs, from severe intellectual disabilities through to those, like Clare, who need support for her medical condition and the behavioural issues that arise from it.
“Starting at a special school was a huge adjustment for the whole of the family,” Bev said. “Clare had a poor ability to understand what was said to her, which resulted in problems with her behaviour. She also wasn’t keeping up academically.
“GS Kidd Memorial School was fantastic. They helped us manage Clare’s condition and taught her to improve her reading and writing, progressing her through key learning areas.
“We have been very lucky to have a supportive, incredible community and family here in Gunnedah. I certainly couldn’t have done it without my sister and brother-in-law, the most amazing people, and the support of our church.”
Clare continued to have seizures until she was around 11 years old.
“When she stopped suffering from the seizures, it was just fabulous for Clare and the rest of the family. But we still had ongoing behavioural and academic aspects to catch up on,” Bev said. “Just like any other family would, we did everything we could to support Clare and get her the services she needed.
"You love them beyond words and you would lay down your life for them. If you could take their journey for them, you would. It was a very hard road to travel.”
Life with a teenager
Bev said it was important to find activities the family could participate in where they weren’t comparing Clare to her peers.
“We really came to a point where we had to say, ‘we have to stop comparing Clare with children her own age, because she can never keep up’; as parents you have to stop trying to make comparisons,” Bev said.
“When Clare was in her high school years, our big emphasis was on school and other activities that would provide Clare with support and opportunities,” Bev said. “She was involved in swimming, dancing, the arts: anything artistic or that would help her such as improve coordination or provide speech therapy. Clare has excelled in art, and her devotion to swimming has been a real godsend.”
Most parents with teenage children have experienced the meltdowns that come hand-in-hand with puberty, an experience Bev knows only too well.
“Change can be really hard for Clare,” Bev explained. “When we left our family home of 10 years, she had difficulty adjusting. She became aggressive and took a long time to get settled. There were a lot of fireworks when we had to move again!”
Through all of life's upheavals, Clare kept on swimming, which provided stability, physical strength, and the opportunity to socialise with her peers. Clare finished Year 12 in 2016 and last year attended Tamworth TAFE, obtained her driver's license, and worked with AUSTSWIM.
“She completed her Certificate I in Hospitality and this year is completing her Certificate II,” Bev said. “Her goal is to complete an AUSTSWIM swimming training course, so she has been working through that process last year and will continue that this year until she can pass the course. While her life has included many changes, she still loves swimming, working with kids and the artistic side of life.”
When she finished Year 12, Clare moved out of home and for the past 12 months she has been sharing a flat with a fellow Challenge client.
“That has been a great stepping stone for both girls. Clare, like most teenagers, needed to learn what life was all about,” Bev said. “Life isn’t about an iPhone, or sitting on your device all day.
“She’s now learnt the life skills of cooking for herself, washing, cleaning, all those sorts of things you need to run and organise a home. Obviously, mum and dad still help but having the NDIS plan has been wonderful.”
With the help of her NDIS budget, Clare has been participating in Challenge’s Connexions program for young active adults with lower support needs. Bev said it was a comfort to know that Clare had support in gaining life skills, and the independence they bring.
“Challenge’s disability services recently provided support when she went through the process of obtaining her driver's licence, and a support worker visits Clare and her flatmate twice a week,” Bev said. “The support Challenge provides is incredible. The support worker is like a second mum to Clare and to me too! She’s a very compassionate, wonderful person.”
According to Bev, Challenge and the NDIS plan have been able to adapt to Clare’s changing needs and goals.
“Our needs vary over time, depending on Clare’s stage in life. Obviously, when she first moved into her new unit, her needs were quite different to the help she requires now, a year down the track.
“For example, Clare went for a job interview down in Sydney, and she was able to utilise the assistance of a support worker from Challenge. They arranged it so Clare had enough support hours available under the NDIS to allow them to travel to Sydney with her by train and stay two nights while she had her interview.
“It was fantastic because it gets to a point in your kids’ lives where mum and dad know nothing, they start to look outside of their family for advice. Challenge has given us security and ensure the girls are in a protected and safe environment. We have peace-of-mind knowing that Challenge and the Gunnedah community are looking out for the girls."
To help parents support their children to gain independence, Challenge has created ‘The School Leaver’s Complete Guide to the NDIS’ ebook. Click here to download your copy.Return to news & stories Arrow pointing to the right