AFTER returning from eight years in the UK, Sue van der Linde came home to South Africa with a mission – to change the lives of special needs children.
During her time in England, Sue had worked with Julia’s House in Dorset – a children’s hospice that provides practical and emotional support for families caring for a child with a life-limiting or life threatening condition – where she trained and worked as a carer. Her passion for special needs children and the knowledge she gained with Julia’s House provided the inspiration needed to open her own version of this service in Cape Town, and in May of 2011 Iris House Children’s Hospice was formed.
At the end of 2011 Iris House had 12 registered families, very little support and only two volunteers. Just one year later, the House had not only grown tremendously in size but also in credibility, with 12 carers, and families to 27 children. Significant events included meeting Premier HelenZille resulting in Iris House been awarded their first grant from the Department of Social Development (DSD).
2013 was an outstanding year for Iris House. The number of registered families surged to 93, and it was again awarded a grant from the DSD, and was selected as part of the premier’s pilot project in Mfuleni and Vredenburg to identify and support family’s with special needs children and disabled family members. Sue was honoured by the Sunday Times and Johnny Walker, making the finals of the nation’s greatest awards in October.
From then on, Iris House grew from strength to strength. They established hubs in Vredenburg, Mfuleni and Khayelitsha. Their care team continued to grow and their training programme received a huge boost with sponsorship from Grand Slots. A bid was submitted at the end of 2014 for a building on the grounds of Stikland. Iris House was on the map.
January 2015 saw Iris House embark on its most ambitious project to date – the renovations of the
hospice grounds and building. Phase One ‘Day Care’ was officially opened by Premier Helen Zille on April 14 that year. The FW de Klerk Foundation was and still is a supporter of the hospice, paying for the cost of their first boundary wall and since then many other projects.
A key venture of Iris House is equine therapy. Lead by equine behaviour therapist Alan Lockwood, and overseen by a nurse and occupational therapist, horses are used to help special needs children with muscle tone improvement, posture, relaxation, or confidence building. “We customise each child’s needs with the correct horse, saddle and position. Ranging from sitting, supported sitting, and across back,” says Sue, a mom of two boys.
“We have four different saddles and various bridles and halters for our two mares. Each session (which is free to registered Iris House families) is done within the safety of horse-proof fencing. When children are seated or lying across the horse we have two side walkers in place for balance. We are in the process of erecting an electric hoist and wheelchair mounting block so as to be able to assist our children over 20kg. Both our horses – Diva and Viltalgo – were adopted from the Cart Horse Association.”
A donation from Rotary Claremont enabled Iris House to purchase the tack necessary for these sessions. Another project which is changing lives is the Iris House surfing programme. “We have witnessed the remarkable therapeutic value and benefits of surfing, and we are committed to growing the programme so we can bring as many children as possible into the sea. We will place an emphasis on
a long-term and sustained therapy.”
A donation of R25 000 at the recent Iris House de Vere Acuma Grand Ball has enabled Iris House to purchase their own adapted wetsuits, an SUP and surf board. Surfing coach Albert Miller has been extremely instrumental in rallying support from the NSRI and other surfing coaches with the result that the sessions are now running in Strand.
Children are either brought by their parents or collected by Iris House. Surf Dog Leia is always on hand to ensure the children have a fantastic time. Next on the cards? Iris house will be opening a doggy day care – young autism adult workshop in 2018. They are partnering with a dog behaviour specialist who already has a successful doggy day care and is looking to relocate. The house has fortunately been granted a second piece of land on the Stikland estate and it is their intention to open in February 2018.
Five young adults with five carers will be employed at the day care and taught how to groom and care for the dogs. Phase two will see the house train another five young adults (with their carers) on how to make homemade dog food, which will be produced on the property, frozen and sold. Phase Three will see
the House open a fully equipped grooming parlour again up-skilling their young adults with their Iris House carers on all facets of dog grooming.
The house is also hoping to open an assisted living home in Bellville for special needs adults and are launching CHARCA Carers, Hospice and Respite Care Association, which will be a membership based organisation and become their lobbying arm. Sue says the concept of a children’s hospice (like the UK model) is not well known in CT or SA as a whole but it’s clear there is a desperate and growing need for centres such as Iris House.
“The hospices we have in SA focus on Aids children and children with TB, not special needs. We are a living hospice and focus on quality of life not just end-of-life care,” says Sue. “We assist any child who is life limited or life threatened by a condition such as cerebral palsy, autism, or a syndrome. This does not include HIV-positive children as I feel there is already much great work done in this area and I am not qualified to work with these children; however, some of our children with severe cerebral palsy may also be HIV-positive. We also have children with some very rare syndromes such as cri-du-chat, MCT8 and Rett (which only affects girls).
One of the biggest challenges families with special needs children face is the feeling of isolation and guilt. They become isolated from society due to lack of access to facilities, and often their friends and sometimes, sadly, family members alienate them. Guilt is also a common issue, as parents tend to blame themselves for their child’s condition. Iris House offers these parents the support they so desperately need.
PAY IT FORWARD
IRIS HOUSE is always in need of nappies, volunteers for their programmes and donations for their running costs. The DSD funding they receive covers less than 50 percent of their expenses; the rest they raise themselves, so donations are always appreciated. Details: (021) 910-0539, e-mail: [email protected], Bank Details: Account Name: Iris House Children’s Hospice NPC, Name of Bank: FNB, Branch Name: N1 City, Branch Code: 250655, Account Type: Current, Account Number: 62314506108, I Ban Number: FIRNZAJJ.