My looong walk to success with dyslexia and autism
James and Nicola Killops
James is born
I have always loved children and wanted nothing more than to be a mom. As far as memories go, no moment can ever compare with the day my beautiful little boy, James Gavin Killops came into the world. Ironically, for the first year or so of his life, I was plagued with a severe postnatal depression, and lost out on so much of those precious early days. James was a happy, healthy, thriving baby. I did not neglect him in any way and I had immense support from my mom, but emotionally, I was going through the motions. When he was 6 months old I was hospitalized for 2 weeks to help deal with the depression. It was a terrible time.
I was exhausted
Slowly, things came right, but I was still plagued with guilt, feeling like all other moms were coping and enjoying their babies. Why was I finding it difficult? In retrospect, it makes more sense. James did not sleep… I was perpetually exhausted and had to deal with all of his needs on my own. (My husband worked shifts and was not at all hands on during the baby and toddler stage) Even as a new-born, he would catnap for 20 minutes at a time, all through the day and night. At a few months old, he would take hours to settle at night, and then he would sleep until about 11pm to midnight. After that, he woke up every hour, feeding for up to 40 minutes, until the morning. From 18 months, he didn’t sleep at all during the day. He was a very happy baby. Beautiful and sunny. People would stop me to marvel at what a beautiful baby he was. He was just extremely active. Again, I was plagued with guilt. How come other moms didn’t feel as exhausted and miserable as I did?
James goes to day-care
When James was 9 months old I went back to work (I am a teacher) and he began day-care. They loved him to bits and I felt a little more human having some interaction with the real world. James met all of his developmental milestones on time except one. As time went by I began to question why James’ speech wasn’t developing even though other kids his age we quite fluent. I got a lot of different reasons, including “he is an only child and has no sibling to mimic’ and ‘some kids are just slower than others’ so I left it. When he was 3 and I realised that a friend of mines child who was a full year younger then James was speaking more fluently I made a more forceful enquiry. I was told that he would probably need speech therapy but they would only assess from age 4.
James goes to Speech Therapy
As soon as James turned 4, I contacted the speech therapist (to be told that it was rubbish that she could only assess from age four, which angered me as so much time, was wasted). She phoned me after her assessments and told me that James was almost impossible to assess. His speech was dramatically delayed and he would not stay on the task as he was obsessed with dragons and kept leading her back there. She took him on as a patient but recommended that James saw a specialist to determine the cause of his delay.
James is diagnosed with ADHD and gets medication
We took James to see Dr Angela Fullerton, who observed James in awe and he literally tried to climb her walls and jump off her furniture. She diagnosed him with ADHD and prescribed Risperdal to help with calming him, assisting focus and assisting sleep. It made a huge difference in the sleep department, but did little else. Fortunately, his nursery school accepted his quirks, recognised that he was extremely bright and allowed him some space to be himself. He was extremely imaginative and spent a huge part of his day in his fantasy world. He was significantly behind his peers with his ‘academic work’ e.g. pre reading skills and early numeracy, but he enjoyed school and he was happy. His speech was coming on and his vocabulary for advanced words grew immensely even though his basic vocab was limited. E.g, He knew words like ‘Plesiosaurus’ but would ask ‘is this she's bag’.
James starts school
When he started formal schooling at Rivonia Primary, the wheels fell off. James felt completely out of his depth and his anxiety levels went through the roof. He did not fit in and was impossible to work with. He would kick and scream when being removed from the car in the mornings and would physically attack me when we were driving home in the afternoons, biting me and ripping my hair. He would run away from class and would be found, ironically, in the school library, as books have a calming effect on him. James began play therapy and was treated for anxiety. I was told to have him assessed by an educational psychologist and was referred to a remedial school. He completed Grade 0 at Cedarwood, which cost five times the fees we were paying at Rivonia, but we felt we had no choice. The rest of the year was a little more positive. When he moved up to Grade One, I was called in again and told he could not sit still and did not want to conform. They wanted me to hire a facilitator to assist him one on one and would cost me around R8000 a month full time over and above school fees of about R6000. This was impossible, so they had one of their own teachers facilitate him 2 hours a day to see if it helped. They then told me that a facilitator was not the answer as James would still not focus at all. It did appear that he was learning to read, but we soon realised he had just memorised the pages from what he heard in class. I received a call at work one day, and was told to come and collect him as he was throwing desks and had lost complete control. He often had tantrums and would run away from class, but this was a big one. I was called to a meeting and also informed by a very empathetic teacher that the way James was being handled at after care was unacceptable. He would be closed into a room or would be surrounded by adults as they shouted at him, totally overwhelming him. My child was devastated.
James is diagnosed with autism and dyslexia
I had been doing my own research and was starting to learn more about Asperger Syndrome and Autism. When I mentioned this at school, they agreed with me and James was sent to a psychiatrist who diagnosed him with High Functioning Autism/Asperger Syndrome. I spent days trawling JHB, searching for his next school and he moved to The Key School for Autism in Parktown. He had a phenomenal, young male teacher, who adored James and his emotional healing began….but he still could not learn to read. He was 8 years old and completely illiterate. The new label was added. Dyslexia! Despite endless work, hours of remedial therapy, OT, Speech therapy and one on one class time, reading would not happen. We were very happy at the Key School as James’s relationships with his teachers made him realise that he was worth something and not someone to be sent away. Imagine my distress when we were informed that the National Lottery was no longer funding the school and it would not be able to stay afloat. (We still paid huge fees, despite it being an NGO, but it relied on Lotto donations for a large portion of the overheads). I was in a panic. How would I convince my child that it was not his fault and he was not being sent away again? I went into overdrive trying to raise funds, gain media attention and stop the closure. But to no avail. The search for an alternate school began again. This is no easy task. You must understand my position. My son is extremely intelligent and has incredible general knowledge. There is no appropriate school for a child who is so incredibly high functioning and capable, yet unable to read at all. Even remedial schools won’t accept him. He is now 11. At the beginning of this year, his reading age was +- 6 years old (Early grade 1 – essentially illiterate). He should be in Grade 5 and he has the vocabulary of a 16 year old. He listens to audiobooks meant for adults such as Bill Bryson’s A Short History of Nearly Everything and fantasy fiction way beyond the level of an average 11 year old. But he was working – and struggling - on a level 1 reader.
James goes to special needs school
I was once again very lucky to find a school and a teacher/principal that is passionate and determined to make a difference. James started at Faery Glen in 2013 and once again, everything was done to get him reading. Intensive, daily Edublox training, every type of reading and remediation programme available and various home school programmes were applied. James just could not read!!! He would write his sight words today and not recognise the same word tomorrow. I was beyond desperate.
I discover the Davis Dyslexia Correction Programme
Val Van Der Berg runs a reading centre in Olivedale, but she also happens to be a parent of one of the children in my class. Last year she told me about something she had just discovered, after two of the children in her reading centre stopped showing up. Being a thorough person, she followed up with the parents, and asked why the children had stopped coming to their reading lessons. She was told that they didn't need reading support anymore, as they had just been through an intervention, fairly new to South Africa: The Davis Dyslexia Correction Programme. Val had researched the programme online, and decided to attend a four day training workshop called The Gift of Dyslexia Workshop, intended for professionals and parents who wish to learn the basics of how to use this approach to help dyslexics. The workshop was presented by Axel Gudmundsson, a licensed Davis Dyslexia Facilitator based in Cape Town. After the four day workshop, I felt this was definitely worth trying with James, but I did not feel I was the right person to take him through it. I decided that no matter what came about or what I had to do to make it happen, James had to work with Axel. In February this year, James worked one on one with Axel for 9 days, and another day in March to follow up. It took every resource we had available to make it happen and many people told us we were foolish spending that kind of money – but when you have been through what we have been through (and already spent what we have spent), you are desperate enough to make it happen.
James was a true challenge
Axel had his work cut out for him as James was one of the most challenging children he had worked with – essentially completely illiterate and autistic, albeit high-functioning. It is not always obvious to those who don’t spend time with him. This is why he is so often misunderstood. He just seems like a regular kid, who talks too much, is obsessed with DNA, has no manners or people skills, and likes to defy you. The first two days were draining and took endless negotiations to get James on board, but by day 3, Axel won James over.
Within 3 days, James could – for the first time in his life - name all the letters of the alphabet by their actual name. He could recite the alphabet fluently backwards and forwards and he was comfortably making attempts to read words in his environment – something he would previously avoid at all costs. For the first time in his life, James recognised when his actions or words were hurtful to me and he apologised to me of his own accord. James was starting to recognise disorder and was willing to clean up after himself. He began to recognise the concept of cause and effect and realising that his actions and behaviour were directly related to consequences. Since working with Axel in February, this has been an ongoing process, and some days are better than others, but as time goes by he seems to be embedding the concepts deeper into his conscience. It has been 3 months since James’s programme and he is working through the follow-up program at home for an hour a day, 4 days a week. He embraces it. He does not protest and actually enjoys it. These are activities he would have previously run away from - literally. He now makes independent attempts to write and type – for example he will Google something. He still usually spells it wrong, but remember this is after being absolutely illiterate for years, despite huge amount of intensive remedial therapy. He no longer gives up and cries in frustration - he simply asks for help. I spell aloud for him and he will transcribe accurately and happily. This is something I was beginning to think would never happen, so I am ecstatic.
James' first love letter
The biggest literacy improvement I have noticed, which has left me thrilled, is that for the first time ever, James attempts to express his emotions through writing. Before, he would fight and avoid even writing his name in a birthday card. He might copy a few sight words at school, but never write something independently. This Mother’s Day, I got a letter, written by him independently, stating that he loved us and that we were the greatest parents on earth.
I don’t care that the spelling needs a lot of work. This is 100% improvement on where I have been for 5 years. I am well aware that James is one of the most severe cases of dyslexia there is, so my expectations have been realistic, but I can’t help wondering what Axel would achieve with a dyslexic child who is already functionally literate. Surely he must work overnight miracles? What started as a gamble turned out to be an investment? I cannot wait to see where we find ourselves a year down the line.
A note from Tracy Erasmus, principal of Faery Glen Special needs school:
James is really coming along in leaps and bounds since the Davis Program. The biggest difference I am noticing is in terms of his handwriting and writing skills. His handwriting has improved greatly in terms of legibility, accuracy and neatness. His creative writing has taken off and although the spelling is not always correct you can phonetically decode his story quite easily. He is much happier and confident in class and enjoys his individual sessions with Mbali in the afternoons. He is taking much more pride in his work and is more willing to be taught new concepts. He is just a star at the moment.
A Facebook post from Nicola on 3 August 2015:
“Such an exciting day in the Killops home. James has been accepted at Orion College [remedial school] and will start the rest of his school career on Tuesday next week. A small milestone for some but a glorious achievement for us. So proud of my wonderful son.”
A Facebook post from Nicola on 30 October 2015:
I am a very proud mom. James swam in his first gala ever today and won all of his races. Onward and upward, my boy xxx
A Facebook post in 2016 from Nicola Killops's amazing friend Val Van Der Berg (now a licensed Davis facilitator), who was instrumental in ensuring that James got to benefit from the Davis approach:
"I am in awe of a very special lady (Nicola Killops) and her genius son James, who happens to also be beautifully autistic & dyslexic.
Nicola has never given up believing in James, and has been through unbelievable hardships over the years to help him. She is James' guardian angel.
A year ago, James could not read or write (he couldn't even write his own name properly).
Thanks to the Davis Correction Programme and a very special miracle worker (Axel Gudmundsson), James is now in a remedial school and producing this..."
Seven years later we received the following message from Nicola:
"James is thriving.
Top of his class in all the humanities.
I am so proud of him.
I owe so much to you.
[I am now] making it my lifeswork to make others know there is hope."