A Parent’s Story

Our son is mentally disabled and on the autistic spectrum

He has been in Kuierkidz Learning Centre, a day care centre in Hartbeespoort since he was 10 years old. With an amazing team of tutors and caregivers he has flourished. Not really progressing mentally but emotionally he has come a long way.

Our love for our blond haired, blue eyed boy with the naughty giggle is beyond measure. The challenges he has faced in his years on earth have been daunting and tremendously scary. Our most important mission has been and always will be to fiercely protect him, love him unconditionally and get him the best doctors, the best therapy and stimulation. Our fight has been constant and never ending.

He is a very strong willed child which has been his saving grace as well as his nemesis. When he gets in a flight or fight situation, it triggers severe anxiety and he will definitely be the fighter. Unfortunately this means that his environment or structure cannot change in any way. Our family life has always been quite limited regarding holidays and basic stuff like going to a shop, restaurant or visiting friends.

When he was little we could still attempt things that families with neuro-typical kids could do, as we could physically handle him if he got aggressive. But as he aged we have been confined to our home to a stage that we felt imprisoned. Secluded – on an isolated island.

When he turned 18 we decided to start looking for a residential care facility for him. He was aging but, so were we…
If we should die who would take care of him? Well, every single place we visited would not take him due to behavioural problems. The places that would take him was in such a ghastly condition that it was soul wrenching.

Hereafter an Occupational Therapist told us that he would and could only be permanently placed in a State Hospital!! In South Africa!! It felt like my child was given a death sentence. My heart was ripped out…

All I could think of was the recent Life Esidimeni incident , where residents were placed out to“unregistered homes” and 144 mentally disabled people subsequently died due to starvation, dehydration, negligence and cold. Psychiatrists from other institutions around South Africa have warned that the Life Esidimeni tragedy is merely the TIP OF THE ICEBERG!

One Mom’s story hit me particularly hard – her child’s autopsy revealed that she had eaten cardboard and paper due to hunger.

Then I started thinking of the other kids in Kuierkidz Learning Centre and I realised that the majority of them and their parents were destined for this same journey, this same pain. There was just one solution – we (the parents) will have to do this ourselves: WE WILL BUILD THEM THEIR OWN SAFE HAVEN! Thus, the birth of “Deo Volente Trust”.

The aim is to raise enough funds to enable us to buy a property that will become their forever home. From early intervention until they are called Home, to rest in eternal peace. This HOME will be purchased in the name of Trust which will ensure that NO ONE can take their home away from them…ever!