Deidre’s Story

During March 2012 we took our son Evan to a paediatrician with a chest infection. At that time, he was 2 years and 3 months old and not speaking yet, but we did not suspect that anything was wrong. We thought that, and were told that boys’ speech development is normally slower than that of girls. The paediatrician that we usually consulted when Evan was sick was off duty on that weekend and we ended up seeing a paediatrician whom he had not seen before. After examining Evan, the paediatrician mentioned that he had a chest infection, but more importantly, he enquired whether somebody had mentioned to us that Evan might be autistic. Nobody had done this. Needless to say, we were shocked and confused and asked the paediatrician what the next steps were. He informed us that we needed to see a paediatric neurologist and also needed to consult with the paediatrician who usually sees Evan.


The very next day we tried to get an appointment with the paediatric neurologist, but only managed to get an appointment 3 months later, i.e. in the beginning of July 2012. In the meantime we got an appointment with the paediatrician who usually sees Evan a week later.

It must have been the longest week of our lives. During that first week since the paediatrician mentioned autism, on my manager’s advice, I contacted Autism SA, still thinking that my son was autistic.

Visit to our paediatrician

Evan’s paediatrician was of the opinion that our son was not autistic, because of the interaction that Evan had with him and because we mentioned that Evan interacts with other children and adults. We enquired about the way forward and he suggested that we start with speech therapy as soon as possible and that Evan might have to attend the Carel Du Toit Centre, a school on the grounds of the Tygerberg Hospital for hearing impaired children.

 Speech Therapy starts and visit to our psychologist

In April 2012 Evan started speech therapy, but it did not go well at all. Evan was not co-operating, i.e. he did not want his speech therapist to touch his face, among other things. His speech therapist then referred us to a pshycologist, who for the first time mentioned the condition Apraxia to us. Again we enquired as to the way forward and were advised to contact a lady who had worked at the Carel Du Toit Centre for 28 years. She also advised that Evan needed occupational therapy.

Occupational Therapy starts

I am not sure what the lady’s position was at the Carel Du Toit Centre, but she came to our house to observe Evan and also mentioned the condition Apraxia to us. Like Evan’s speech therapist, she advised that occupational therapy was necessary and referred us to an OT at the Carel Du Toit Centre. I asked her whether she knew of any other parents with children with this condition and was then put in touch with Lydia De Villiers. She also mentioned that admission to the Carel Du Toit Centre was no longer available to children with Apraxia. Upon enquiry as to what the schooling options are for Apraxic children in the Western Cape if they are not allowed into the Carel Du Toit Centre, I was told that there was no option at the moment.

I struggled to get hold of the OT at the Carel Du Toit Centre and later learnt that she was overseas at the time. My initial conversation with Evan’s OT left me very optimistic as she told me that they would be launching a pilot project specifically for 5 Apraxic children between the age of 2 and 3 to see whether early intervention would make a huge difference in their progress. A week later, when we went for Evan’s first assessment at the OT, we were informed that the pilot project would not take place. In the meantime Evan started occupational therapy.

Visit to our paediatric neurologist

In July 2012 we saw a paediatric neurologist who has confirmed that Evan was not autistic.

Another mom of an Apraxic child

When we heard that Evan would no longer be admitted to the Carel Du Toit Centre, it made us extremely despondent and led me to contact Lydia De Villiers, the only other mom of an Apraxic child that I knew of. We chatted briefly and she advised me that she had started a lobby group to make the Western Cape Education Department aware of the fact that early intervention is necessary for Apraxic children and that it cannot be accepted that they are not allowed admission to the Carel Du Toit Centre, with no other alternative. Since our 1st meeting with the Education Department in August 2012, they have made available a pilot project for Apraxic children at the Tygerberg Hospital School for 2013. Lydia has recently informed me that this project will be available for 2014.

More needs to be done

Our family’s journey with Apraxia started in March 2012 and throughout this time I felt that more needed to be done for Apraxic children in terms of:

  1. Awareness about the condition
  2. Support for parents and families
  3. Structures and processes around diagnosis and schooling of Apraxic children
  4. Research and statistics, specifically in South Africa
  5. Recognition of the condition with the Medical Aid board in order to get it listed as one of the PMB conditions

A 3rd mom of an Apraxic child

During my time searching for material on the internet relating specifically to Apraxia in South Africa, I stumbled across a blog of a mother of an Apraxic child. Lydia and I left comments on her blog and that very night Tamryn Joubert made contact with us. The three of us have since met up (Tamryn joined us in Cape Town from Rustenburg over the 1st weekend in July 2013) to start working on the items listed in the preceding paragraph.

I am grateful that Lydia, Tamryn and I have joined forces to make all the things needed see the light of day. Our journey with Apraxia will be long and definitely not easy, but I believe that it is necessary.