My Perfect Family: Ebony Sinclair
Ebony Sinclair is a go-getter born with Achondroplasia, a form of dwarfism. Ebony and her husband Ge...
My Perfect Family:Fragile X
To discover you’re the carrier of the genetic condition Fragile X only after your children are born ...
My Perfect Family: Nash Jones
The Jones family’s life changed forever when their youngest boy Nash was diagnosed with a rare condi...
My Perfect Family
Exploring the day today lives of tight-knit families, who are managing complex or unusual conditions...
My Perfect Family: Lydia Golding
6-year-old Lydia Golding was born with her right femur bone significantly shorter than her left. In...
My Perfect Family: Hatty
Hatty Walton is a 13-year-old star on the show Mystic, who lives with a hearing impairment. Hatty ho...
My Perfect Family: Twins
For young mum Nikki Stokes being a mother of five means there's never a dull moment. With non-verbal...
My Perfect Family: Georgia Heard
Georgia Heard thought she had parenting all mapped out. But when the younger of her two boys was di...
My Perfect Family: Mahia & Tipene
Mahia and Tipene Stephens were born with a congenital eye disorder, causing their eyesight to deteri...
My Perfect Family: Harper Ahern
Since being diagnosed with Muscular Dystrophy at age four, 10-year-old surfer Harper and his family ...
My Perfect Family: Meet the Asners
They call themselves the "The Brady Bunch of Autism". Descendants of Hollywood royalty, Matt and Nav...
My Perfect Family: Kat and Ella
Kat Yearbury is a mother to two-year-old Frankie and six-year-old Ella, who has Cerebral Palsy and E...
My Perfect Family: The Priestleys
Four of the six Priestley family members live with Autism. Because they’re able to function at a hig...
My Perfect Family: No Respite
Life during a pandemic is a challenge for all parents with kids at home. But for parents whose child...
My Perfect Family: Kim Preston
Raising three boys is always a big task, especially when two of them have severe autism. But Kim Pre...
My Perfect Family: Zoe
Zoe Tate lives with Wolf-Hirschhorn Syndrome, a genetic disorder affecting her appearance, growth an...
My Perfect Family: Hunter
Hunter McGregor is a passionate gamer, a design school graduate, and he runs a B&B with his mum, Roi...
My Perfect Family: Jaxon Woolley
15 year old Jaxon Woolley is already blitzing through para-sprinting records. An athlete to watch, J...
My Perfect Family: Max and Grace
Siblings Max and Grace are off on a road trip to Queenstown, putting Max's independence to the test ...
My Perfect Family: Friedreich's Ataxia
Preparing for a 30th birthday is a big deal in the Boon family. Three out of five siblings live with...
My Perfect Family: Courtenay
Demar Gear was just five months old when she contracted meningitis, leaving her unable to walk or ta...
My Perfect Family: Tara Aumalesulu
Nine year old Tara is launching her very first album, Pele O Lo’u Fatu. Living with visual impairmen...
My Perfect Family: The Fergusons Part 2
Last week we met the Fergusons, a family of five who communicate using NZSL. Here, we join the Fergu...
My Perfect Family: OCD
For two teenage sisters living with OCD, the world can often be an uncertain and scary place. In the...
My Perfect Family: Grace Payne
Grace Payne is a powerlifter who has competed in the Special Olympics as an autistic athlete. Now, 2...
Brothers and Sisters
The unique perspective of those closest to us, our brothers and sisters.
My Perfect Family: Creative Clan
Ranger Ashurst is eleven and needs regular injections to control his Chrone's disease, his eight yea...
My Perfect Family: Tri Rugby
For members of Christchurch's Tri Rugby team - who live with intellectual disabilities - rugby is mo...
My Perfect Family: Bold As Brass
As New Zealanders living in Australia, Abbi and Morgan Brass received no government support when the...
My Perfect Family: The Fergusons Part 1
The Fergusons are an average family of five; they have fun, they fight, but mostly they get along. ...
My Perfect Family: Jo & Leon
Young doctor Jo Scott’s career was on the rise when a brain haemorrhage changed her life. Seven year...
My Perfect Family: Perrones
Young anime artist Bee Perrone lives with the rare condition, Ivemark Syndrome. Understanding this i...
My Perfect Family: Little People
The 50th annual conference for Little People of New Zealand (LPNZ) is fast approaching, and 27-year-...
My Perfect Family: Southland Lockdown
Awards Night is the highlight of the social calendar for a vulnerable workforce at Southland Disabil...
My Perfect Family: CDKL5
Learning your new baby has a complex rare condition is life altering. Three Mums connect over their ...
My Perfect Family: Malaena Cariño
12-year-old Malaena Cariño has a rare genetic form of epilepsy. Her whānau have exhausted most treat...
My Perfect Family: Martine
Blind since birth, Martine Able-Williamson is now a global leader in the blind community. In this i...
My Perfect Family: Cystic Sisters
Kristy and Nikki are sisters and young mums who bring smiles to the faces of strangers by doing surp...
My Perfect Family: Sam and Jason
Sam lost her sight as a baby due to meningitis, and her husband Jason has limited vision due to a ge...
My Perfect Family: Alex
Performance is in the Walsh family’s DNA. When their youngest son Alex was born with Down syndrome, ...
My Perfect Family: Tiffiney Perry
Always an active person, Tiffiney Perry continued participating in sports and achieving success afte...
My Perfect Family: Family Man Graeme
When Graeme Porter was diagnosed with an intellectual disability as a child no one expected him to r...
My Perfect Family: Scruff's Bunch
Kim Preston (Scruff) reckon's she'll be caring for her three adult sons with Autism until she 'carks...
My Perfect Family: Candle Dad
Raising four children alone is a challenge - more so, when two have Down Syndrome. Tony Sykes rose t...
My Perfect Family: Southland
Southland Disability Enterprises employs over 80 people who live with a disability. For Mary-Ellen J...
My Perfect Family: Melody
Within just one year Melody entirely lost her vision, gave birth to her first child, and left her ho...
My Perfect Family: Welcome Home Stevie
Murray and Janine's son Steven was a gentle boy with autism. 18 months ago he left their house with ...
New Zealand’s unprecedented 2020 national lockdown took its toll on most. For those with vulnerable children, it was even more terrifying and challenging than their daily struggle of caring for them.
Most parents understand the need to take time out from their routine. Picking up a book, or a nap for 30 minutes is something to look forward to, and a slight respite from the intensity that surrounds their family environment. Having time away from the family can boost mental health and revitalize parents during the week.
Parents of special needs children require all the above, and in many cases, more. However, for Bronie (surname) and her husband Andrew, the lockdown meant no break and no support for themselves and their two special needs boys during eight weeks in lockdown.
“After the first five days, the boys’ behavior got quite bad,” she says.
“They get really silly. They wriggle and laugh a lot, which does not necessarily mean that they are happy. It means they are uncomfortable, and they don’t know how to express that ‘this doesn’t feel right’,” she explains.
Both boys (age 6 and 7) were born with a rare genetic disorder known as Fragile X, a genetic disorder characterised by mild-to-moderate intellectual disability. The average IQ in males is under 55, while about two thirds of females are intellectually disabled. Physical features may include a long and narrow face, large ears, flexible fingers, and large testicles.
“They can’t read or write, so they can’t do the schoolwork that their schoolmates are doing. I have to try and find a way to change it to suit them,” says Bronie.
The added challenge of Fragile X can take its toll on Bronie and her family. Already under pressure during lockdown to entertain and educate her special needs sons, it's easy to forget about herself and this has been the only way forward for her since lockdown cut off access to respite care.
“It would have been awesome to have one of our care-givers come in, (not even everyday) just for a couple of hours a few times a week to take the pressure off. Just so I can do something like lie down and read a book!” Bronie adds.
Nicky Stokes and her family saw lockdown under similar circumstances. With five children aged between four and twelve, (2 of whom have high needs) the family has long outgrown their rental home.
“We were applying for mortgages before lockdown, it's just so crowded here,” she explains.
The family have been working with an agency that helps build homes for special needs families, who could otherwise not afford it.
“We had ACC involved, we had the ministry of health involved. We desperately need it, the house we are renting is much too small and it is not appropriately equipped for a full-time wheelchair user,” she adds.
Nicky's eight-year-old twins Felix and Maddie, were both born with a disability.
Maddie has Septo-optic dysplasia (SOD), is a rare congenital malformation syndrome featuring underdevelopment of the optic nerve, pituitary gland dysfunction, and absence of the septum pellucidum (a midline part of the brain).
“She also has a brain injury, which has significantly impaired her development. She is nonverbal, she’s a wheelchair user and she has quite fragile health,” says Nicky.
Felix was born with phocomelia, a rare congenital deformity in which the hands or feet are attached close to the trunk, with the limbs being grossly underdeveloped or absent.
Nicky explains his challenges.
“He has two fingers on his left side at shoulder level, and three fingers on his right side. Felix has quite a severe spinal scoliosis that is progressing quite rapidly as he grows, and that is going to require surgical intervention.”
Once a week, Nicky usually gets a night off when the twins stay with a friend.
“If the children are at respite, I might not get to go out and have a holiday style type of break, but just that night of knowing that I don’t need to listen out or worry , then I sleep much better,” she says.
Having time to sit down and figure out the things she needs to do for the day is also important to maintain the wellbeing and care of the twins.
“And then, keeping on top of the housework. I need to make sure there’s the right food, medicine is in stock, and clothing is available.” Nicky explains.
Despite their struggles both families have been able to take some positives from their time in lockdown.
“The one thing that the lockdown probably has been good for is that they are getting more independent with their play,” says Bronie when it comes to her boy’s adjustment to their new world.
Nicky also finds the positive attributes from each of the family’s challenges.
“It's been heartening to see the positive response, as a culture, we kiwis have quite a strong sense of fairness and most people are really supportive of saying you know what our most vulnerable people need our protection.”
Words by Mark Shaw
