This is Michelle West’s fight to bring her child from a life-threatening disability into mainstream schooling.
I was told that I would never have children, so much so that it was even not worth having fertility treatment, so when I found out I was pregnant with twins I was shocked and overjoyed. The twins were fraternal, each with their own amniotic sacs and they were lying in a transverse position, with Caitlin at the bottom, and Daniella above her.
At 30 weeks and five days pregnant I knew something was wrong as I could not feel Caitlin kicking and usually she was my “river dancer”. My gynae told me not to worry as it was normal at this stage but later that night Caitlin’s waters broke, and the twins were immediately delivered via c-section. Daniella was healthy, but Caitlin was put on a respirator. It was only two weeks later, when the nurses placed the girls together in a crib that Caitlin breathed on her own: from the start she was a fighter.
Those first few months were hell. Apart from Caitlin’s chronic reflux, she was not developing at the same pace as her sister: but everyone told me it was just because she was a prem baby. I would have screaming matches with the paediatrician as I knew something was not right and she insisted that it was me: that I was not coping and needed antidepressants.
Eventually when Caitlin was almost nine months old and could still not able to hold a cup or bottle herself and the right side of her body twisting and bending in, the paediatrician agreed to a MRI. She said it was just to prove to me that Caitlin was fine, and that she felt I was being an irresponsible mother as an MRI was putting Caitlin at risk. The results were devastating, but they proved me to be right: Caitlin had been bleeding on the brain for nine months and had lost the entire motor skilled section of her brain. She was diagnosed with Spastic Diplegic Cerebral Palsy. (CP).
Releasing the tiger in me
The paediatrician went on to tell me that Caitlin would never crawl, walk or talk and her life expectancy was very short. She said that there was no point in trying any therapies; that I should just make Caitlin’s short life easier.
I was having none of that, and my fight for Caitlin began. I found amazingly dedicated therapists to work with Caitlin and at one year and three months, she crawled for the first time! For years I have been a single mom, so finances were almost impossible. I organised fund raisers and raised awareness around Caitlin’s story. I even fought for four years with our medical aid for CP to become recognised as a chronic condition so that I could afford the continuous therapies she needed.
Caitlin has had various surgeries, endless therapies – four therapies, each three times a week – and when she was five she received stem cell therapy in Kiev: with incredible results. Now at the age of seven Caitlin has taken her first sure footed steps without walker or splints!
There is nothing I will not do for my girls and I will not take no for an answer from anyone – especially not from my girls. I am Caitlin’s biggest champion and greatest opponent, and I won’t let her give up. We have no choice but to get up and carry on. It was Daniella who taught us this strength after I had a car accident and was in terrible pain: she made me get up and got me through it. My girls are brilliant people. I am very proud of them.
Knocking down the doors
Caitlin is a very smart, determined and loving child who loves to laugh and has a special ability to connect with people. Cognitively Caitlin is above average: before her stem cell treatment she was assessed by education specialists and at age six, she had the abstract thinking and understanding of an eight-year-old with a photographic memory, she just struggled to translate her thoughts into physical communication. Caitlin did not need to be in a special needs school, in fact many refused her a place. Special needs schools serve a vital purpose for children with mental challenges, but many children with physical disabilities don’t belong there: it brings out my inner fury to see how many children are stuck there because people just don’t seem to know what else to do with them, or how to get into the Inclusive Education system.
When Caitlin was two years old I enrolled her into a special needs playgroup. It did not take long to realise that this was not the right environment for her, the neglect was terrible and she became very depressed. On top of that she was getting sick all the time, so under the advice of my GP I took her out. Caitlin was three. Daniella was at a mainstream preschool and was thriving there, so I approached them to take Caitlin. They were hesitant at first and did not think she would cope, but if Caitlin came with a facilitator they were willing to take the chance and said.
When she turned four, the Government’s White paper on inclusion came out, so I began emailing mainstream primary schools to offer Caitlin a place. When they heard she had CP, many turned her away without meeting her or even giving a reason. Eventually Bryanston Primary Grade 0, was willing to meet Caitlin. They acknowledged that the school’s infrastructure was not geared up for it, for example the ramps were too high, but were willing to give it a try and Caitlin was enrolled into Grade 0.
At first Caitlin struggled and it looked like she was really not coping. She was also taking a lot of emotional strain: with up to 40 children a day asking her: “What is wrong with you?” during the first term. Through play therapy we taught her that everyone is broken or “disabled” in some way, it is just that some people hide it on the inside, and others wear it on the outside. Then in March the stem cell treatment began to kick in and things suddenly came right, and with the use of an iPad and an iPad stylus to keep up in class, Caitlin began to blossom.
On the right track
What has become obvious is that by including Caitlin in mainstream schooling, not only is she getting the education that is her right, but just her presence has a profoundly positive impact on other children in the school. I work as a Project Manager for The Imbali Foundation. This foundation, started by Melanie Sarjoo, aims to champion inclusive education in South Africa. Caitlin started Grade 1 in January 2013 with all the hope and excitement that goes with it: she is the "Little Train That CAN".
Picture Source: Sherene Innereyephotography