South African therapists are so glad to be given a chance to be part of the International Normative Data Collection (INDC) for the Evaluation of Ayres’ Sensory Integration (EASI)- a test that will eventually replace the Sensory Integration and Praxis Tests (SIPT) which are currently the gold standard for evaluating sensory integration dysfunction.  However, collecting data and establishing norms and diagnostic patterns from children across the world is no mean feat and has its challenges, as Sally Fraser-Mackenzie shares with us in this week’s humourous and frank account of her experiences.  Sally we salute you for your perseverance!

The online training for learning the new Evaluation of Ayres Sensory Integration (EASI), soon to hit South Africa was excellent, what a breeze! And so interesting in terms of what they have kept and thrown out from the SIPT. It was lovely to see our old clinical observations integrated into it all as well. So here goes with the South African Normative Data Collection! And that is about where the wheels started coming off, and massive challenges meeting us.

As Normative Data Collectors, it is amazing to feel part of 72 country wide collecting this information. It really gives you a feel of the complexities of how the norms for any tests are gathered. So testing five children didn’t seem like such a gargantuan task.  As my Afrikaans isn’t very good, certainly not good enough to dive in and test 5 Afrikaans children with a new test I wasn’t very familiar with, I got allocated English children, and in doing so, a school nearby, one where my child is attending. A big government school with 35 kids per class, 2 English streams per grade, which makes 70 English children per grade.  Then I got allocated my Male/Female; Black/White/Indian/Coloured; 6yr/7yr/8yr case requirements. How hard can it be to find ONE 7 year old BLACK GIRL who is (1) willing, (2) seems neurotypical, (3) who has neurotypical siblings, (4) whose parents can manage the fairly dense information package and (5) whose parents give permission. It turned out to be a 1/70 experience!!! Yes,  I could find ONLY one per grade – just enough in each grade to limp through. How was this possible? As I discovered, the questionnaires were just too much for some parents and disappeared into the ether, despite much following up through the poor harassed teachers (by me). Some parents refused without reason – a bit of a blow, but fair enough. One teacher assured me that the chosen boy was White, but when I looked at the form, the very white blond mother had written Indian in the block, as the father is Indian. The teacher did not want to tell the boy I now couldn’t test him, especially based on race (she had already got him all excited about being tested!) and asked me nicely if I wouldn’t mind just testing him and then not entering the data (just a few hours of my time for political correctness….!!), I promised I would give him a gift to apologise and no, I was unable to do it.

Then there was the case of the teachers promising me that there is lots of space to test, but when I arrived, there was no space. You have to book the space, and even then, the “space” was a small store room with a large table and no chairs. So the initial two assessments I did, were in a corridor which was sporadically busy with classes walking through, and kids coming and having a fascinated look.

The following week, the next two were in the storeroom. At least it was quiet, but juggling all that EASI stuff and equipment was a challenge. One child was a quarter of the way through and mentioned he had done similar stuff with his OT – stop right there! Oops, teacher knew nothing about it, but it was in fact ticked by the parent and I hadn’t checked the form in that much detail. It had been years ago. Find a new kid for next week!

The final child was found by pressurising the teacher until she was sick of me, and I had no option at this time of the year, there were no male black 6yr olds in the 70 Gr 1’s who didn’t have learning issues, so I had to look at Gr R just before they turned 7. The teacher’s assistant was on maternity leave and her son was in that class. After 3 weeks of pestering, the permission form was returned so I had the go ahead.

Being fortunate to now have an entire classroom at the preschool, I arrived an hour early and set up the whole EASI, as different stations around the room. I knew that the test itself would take much less time if it was like this, and easier for the child and myself. Then I waited. The class begins at 8. The child wasn’t there….. At 8:10, the mother sent the teacher a message to say “There was a tyre accident”. Assuming that meant some sort of traffic accident, I offered without hesitation, to go and fetch the child from the townships. Luckily for me in Knysna, the townships are not that far away. I phoned the mother and she couldn’t explain directions to me, but apologised as she’d forgotten I was coming today and said “no it wasn’t a traffic accident”, but that he didn’t want to come to school. Confused but determined, I tenaciously headed into the townships to track this boy down! I drove around for some time, phoning her regularly to discuss various landmarks, water towers, churches, and asking other people I came across to speak to her and discuss where she was, which was the most successful strategy. I found them eventually, the boy was well, and it turned out that the previous day at aftercare, he had been playing on the tyres  (hence tyre accident) and a boy had kicked him in his private parts, and he hadn’t felt like coming to school. So, we drove back to school, and I conducted my 5th and final EASI successfully and smoothly.

Supplying gifts to all the children and all 5 teachers (since they were all different) was a necessary part of the process, and although very time and cost ineffective for me, it was well worth it! I’ve felt part of a bigger process and will understand and feel invested in the EASI assessment knowing that those 5 children made up the norms we will use for decades to come.

[Sally Fraser-Mackenzie has been serving on SAISI’s board for many years.  She runs a private practice in Knysna, Western Cape.]