I don’t want this post to sound like a rant, or that I am sour or unhappy with my life. The purpose of this post is to shine light on the fact that families with neurodivergent children (or other disabilities) don’t have an easy ride in life. I was having a conversation with a fellow neurodivergent parent and she was telling me the in’s and out’s of trying to get her son into a government special needs school. To say I was flabbergasted at the process, is an understatement. The hoops this family has to jump through and the finances invested into just getting their son on the list for placement was significant.
In a nutshell, her son obviously started with his initial autism assessment at 5 years old or so. She managed to secure an assessment based at Tygerberg Hospital in Cape Town that has a group of highly qualified doctors and specialists in one place to assess him in one go. Where those of us who do not know this have done it one therapist/assessment at a time. Here are a few of the assessments that are required for an official diagnosis:
- Educational Psychologist – to assess for any learning challenges and neurodivergent tendencies. (Cost of between R2500 – R4500)
- A speech assessment to establish the level of communication and understanding (I may have this explanation upside down). (Cost between R1200 – R2500)
- A GP or Psychologist or OT to do an official assessment after all of this to nail down the diagnosis and suggest therapies that may be needed going forward. (Cost of between R1500 – R5500)
- Lets not forget that if your child is diagnosed with profound autism, you have more assessments with physiotherapists and cognitive specialists coming your way. (Costs vary with the specialists in question but anywhere between R2500 – 8500).
- *costs are quoted from personal experience with medical aid assistance. Government assessment pricing is unclear.
So, now you have your papers, very important to keep them safe in a file you will need these forever, you then apply through the Department of Education for concessions or placement into a special needs school. There are only two or three in our area. If your child does not have a serious enough diagnosis, an assessor is sent to your home to check that your child is in fact autistic and in need of special education. As if you don’t have enough guilt and stress in your life, now you have to rely on an outsider to say if your child “makes the cut” or not.
This family has been on a waiting list for 3 years so far.
What happens to that child’s education and life while waiting to get the go ahead to attend a school he so desperately needs? This family is unable to enroll in a private learning center or specialist school, and is now at the mercy of the Education System.
I am not starting a beef with the DOE, I think the staff have a hard enough time trying to keep their heads above water with leadership that seems to want to (up until now) ignore the holes in the boat and continue sailing while the ship sinks. Throwing their funding in to a black hole and the vulnerable children and families pay the ultimate price of their children being placed in mainstream schools and told to sink or swim.
I would like to mention that Private Mainstream Schools do voice that they are “inclusive” and “neurdivergent accepting” but in my experience the staff are not trained at all in accommodating these kinds of children into their classes, and nobody is taking the time to educate themselves on their real needs, and then these children spend their school career in burnout from continuous masking and forcing themselves to comply. This ends up being a complicated issue to resolve, especially later in life. Teachers have the experience of “He’s fine in my class”, yes, that’s because he’s masking so heavily that you don’t see it, but when he gets home, the flood gates open and it’s meltdowns every single day.
Back to my point. Families with neurodivergent children have a lot on their plate. Keeping records of everything, and pulling out these records every time you go to a new institution or assessment or application. This file is like GOLD, and if the house started burning down, this is one of the first things I will grab before heading out the door with my children and animals!
If you are in a position to send your child to a private special learning center, you will be dishing out around R4200 – R6500 per month for school fees. Often this will include speech therapy and some form of cognitive training, which is a great bonus. This is not something you can claim from your medical, and the Government does not subsidise these schools.
Then you have challenges with any medical procedures that need to happen, my son cannot just have any old procedure done in the doctors rooms. Most of time he needs to go under anesthetic or sedation to get things done like fillings, endoscopes and the like.
Well, I suppose by now, you’re getting the point.
This is why I am so passionate about spreading awareness and education snippets on my pages, parents and families with neurodivergent children need support and understanding. Most of the time all we get is “they’ll get over it”, “don’t be silly, he is big now, he’ll adjust” – no Susan, he won’t adjust, his brain is BIOLOGICALLY INCAPABLE OF ADJUSTING.
It makes me angry and frustrated and sad, and these comments are from TEACHERS, the very people who work with our children! I urge everyone who works with kids in any capacity to just read online, Instagram or TikTok, inform yourself and come alongside us instead of patronising us just because we are not “educators”. We have researched neurodvergence as if we are doing a thesis, we spent nights reading books, asking questions, doing online zoom seminars with specialists from other countries, picking our therapists brains…we know more about this than your average GP.
Anyway, the challenges that we face are immense, and we still manage to love our kids, stay relatively sane, and keep food on the table.
Here are some of my favourite accounts for highly qualified therapists and neurodivergence experts for your convenience:
Mrs Speechie P – Pediatric speech language pathologist, autism evaluation specialist, & disabilities advocate.
At Peace Parents – Coach and educator for parents making a positive paradigm shift in raising their Pathologically Demand Avoidant (PDA) Autistic children. Deepening connection, trust, and harmony in the home.
OT Toolbox – Your toolbox for occupational therapy activities, tips, and TOOLS to help kids thrive.
The OT Toolbox offers resources for parents, teachers, and occupational therapists.
Neurodiversity Centre KZN – Specialist Neurodiversity support in the heart of KwaZulu-Natal, South Africa.
