Winners: The Chaeli Campaign
Erin and Chaeli: our daughters. Erin, as our firstborn is the best gift ever given to parents. The experience of her birth is unique. With Chaeli it was different. I had been there before; there was a lot that was different. That is because she, too, is unique …
At eleven months Chaeli was diagnosed as being cerebral palsied and this is the single greatest blessing associated with her disability. I have always been thankful that Chaeli’s disability was not diagnosed at birth as I believe that many newborn parents, when told that their child is disabled, can’t see their child for the disability. We were privileged enough to get to know our child, have her personality impact on us, dream our dreams for her. And when her disability was diagnosed she was already a real person to us – her disability has never defined who she is. And therein lies the blessing.
Our greatest focus as parents has been Chaeli’s social inclusion. We have been fortunate enough to have family friends (the Terry family) who have three daughters. Tarryn is two years older than Erin (her best friend despite the age difference), Justine is the same age as Chaeli (and has been her lifelong best bud) and Chelsea who is three years younger than Chaeli. These five girls have been one another’s sisters, playmates, confidantes and sounding boards for their entire lives. What a privilege!
Social interaction and knowing that you belong in a group is an essential human need and Chaeli’s right to belong was of paramount importance to us. Having Erin and the Terry girls as friends made it a lot easier. They were given the choice initially: Do you want to play with Chaeli? Yes. Then these are your responsibilities:
1: Don’t leave her by herself
2. Change your games to include her in your play as much as possible
3. Make it work
And if they didn’t meet these responsibilities? I moaned at them and asked them how they would feel if they were excluded. As her mother, I felt that it was my responsibility to educate Chaeli’s friends about how she should be treated and what their responsibilities were. I persevered in what I instinctively felt was the right thing to do. Chaeli didn’t need to sit in adult company all day counting our teeth. There’s no quality of life in that – just a displaced little person, bored out of her mind. The alternative was placing her in the hands of her peers. They needed to push her wheelchair, create new games, get irritated with her as they learnt the patience to slow down some of their games, and eventually know that they loved Chaeli for who she is just as she loved them as they are.
Of course there was a calculated risk involved. If we made her 4-year old peers her playmates and gave them certain responsibilities for her physical well-being then there was a real chance of her being hurt. How is this different from able-bodied youngsters? They get hurt, scuff knees, fall out of trees and off bicycles. Why should our cerebral palsied child be denied the same growing experiences, especially if it came hand-in-hand with friendship and fun? We thought that it was a risk worth taking. At her fourth birthday party two friends in charge of her wheelchair were clearly dicing for pole position when they tipped her into the rose garden. Fortunately the roses had just been pruned, but she did resemble a tortoise with a wheelchair shell, and she did cry pitifully (along with her two friends!). A few tears, a few scratches, an experience shared. I have also been on top of a fire engine with her riding around the streets of Sedgefield, on the back of a camel in Muizenberg and screaming down Monkey Falls at Ratanga Junction. I have been freed of all kinds of social/age constrictions because I’ve had to experience things with Chaeli in order for her to experience them at all. Aren’t I the lucky one!
We have always believed in compromise. Compromising total physical safety for quality of life. Is this viable? Be unconventional, do the unexpected? Chaeli is a “normal” child (what the heck is that?!) with normal needs. Her wheelchair does not make any of that different. Children are very accepting and very curious and we used this to our advantage from an early age. As a school teacher it was important to me that when children asked questions about Chaeli’s disability, that she and the rest of us were equipped to answer those questions. We have had long conversations with little people, complete strangers, in shopping malls. I have taken Chaeli to schools and chatted to them about what she is physically able/unable to do and her fiercely independent spirit. We have engaged anyone wanting to know more in conversation and the most important part of this is Chaeli seeing her disability as a bridge to communicate with people she might otherwise never have met. She manages to convey to them that her wheelchair limits her physically only – that she has choices in deciding how she lives her life and these choices are as multitudinous as any other “normal” child’s choices.
At the age of six Chaeli was diagnosed as having a degenerative neuropathy as well as being cerebral palsied. There was regression for the first two years and then her OT was stopped at the special needs school which she had attended since the age of three. This happened when she was nine. A series of random events led to my husband, Russell, and I taking matters into our own hands and, in the period of a week, getting her a facilitator and an assessment session at our local mainstream school. We felt that if her body was letting her down, we needed to provide her with the opportunity to fly with what was working perfectly: her bright mind. So … goodbye domestic worker – hello facilitator! And we have never looked back!
Without her mainstream experience I believe that Chaeli would not have been as challenged – intellectually and socially – as she has been. I have formed the opinion, through this experience, that when we pander to our children’s disability we do them a disservice. It’s a form of “spoiling” that they can ill afford. Chaeli has been mainstreamed for three years now and went from a class of 13 to a class of 33. When asked what she enjoyed the most about her new school her answer was: “Sometimes I have to shout to be heard!” In her first three years of formal schooling at the special needs school we were told each year that she was passive in group work. Hmmmm.
Can a disabled child find her place and feel that she belongs in a mainstream environment where she is the only wheelchair bound learner? Here’s a checklist of the various activities Chaeli has done over the past three years at Sweet Valley Primary where she is currently in Grade 6 (she turns 12 in August):
This kid has fun and her social programme is a lot fuller than her mother’s! We also manage to fit an hour of private physio into the mix each week. She has a standing frame at school which she uses each day, but now refuses to sit in the special desk we got for her. She doesn’t want to be “different” so another compromise: get the right-sized desk and a footboard that keeps her feet in the correct place and helps to position her correctly in the two-man desk. Has she fallen out of this desk? Yup – happened two weeks ago. Fortunately Matthew, who sits next to her, is a star athlete and plays rugby for the Under 12A team. His good reflexes made him catch her before she slipped out of her desk completely. I believe that they were writing exams at the time and caused quite a commotion!
Another thing that has happened as a direct result of Chaeli’s mainstreaming is the creation of The Chaeli Campaign by Chaeli, Erin and the Terry girls. Chaeli wanted to be more independent, so these five girls (between the ages of 6 and 12 at the time) raised R20 000 for Chaeli’s motorised wheelchair (in just seven weeks). We then decided that we would form a Non-Profit Organisation (called The Chaeli Campaign, of course!) with its main objective being to mobilise the minds and bodies of children with disabilities. The main proviso in forming this NPO was that the five original members would always be actively involved in the organisation. They founded it and are the spirit of The Chaeli Campaign. The way in which these five girls act as a team forms a fabulous blueprint of how inclusion should work in society at large. The Chaeli Campaign turn two years old on 6 August and in that time we have provided mobility aids for over 100 children; run therapy and outreach programmes at Ocean View, Masiphumelele and Sive Nathi (approximately 80 children) and are supporting one profoundly deaf child in a mainstream environment in East London. The Chaeli Campaign is active in five provinces. I also gave up my teaching post in June 2005 to run The Chaeli Campaign fulltime. Not every mom can say that her young children have created fulltime employment for her! And what is the core motivation behind The Chaeli Campaign? We’re paying forward the blessing of Chaeli in our lives.
The Chaeli Campaign presents therapy programmes in Masiphumelele and Ocean View. To get to know the local business community better the Campaign acquired 50% of the Noordhoek Business Network with Longbeach Mall as their partner in this venture. The launch took place on the 5th July 2006 and the junior Committee Members were the guest speakers.
Administered by Adults – Powered by Kids is our maxim. We believe that part of our mission is to grow social leaders of the future and our children are involved in the following way:
All five girls do presentations to promote The Chaeli Campaign. Even Chelsea (8) is very good at grabbing a microphone and talking to an audience of 200 without flinching.And would this ever have been possible without Chaeli being disabled? Nope. Blessings come in weird places and we need to claim them when and where we can. The discovery of Chaeli’s degenerative neuropathy is what led to her OT being discontinued and her mainstreaming. Had this not been discovered she would possibly still be a passive group member in a special needs school. Her disability has given her a quality of life and recognition as a young woman of worth (she was the youngest ever finalist – aged 10 - in the Shoprite Checkers / SABC 2 Woman of the Year 2005) that might otherwise not have been possible. Her physical challenges have created qualities of courage and independence that inspire those around her. Her friendships have already lasted a lifetime. She and Justine have started planning the house that they intend sharing “when they grow up”. Her vision for her life is one of independent living and holding down a job (she wants to study zoology – specialising in primates). She has claimed her rightful place in society and has added quality to the lives of the people she has touched. Through The Chaeli Campaign she has become a positive role model for thousands of disabled children who don’t dream of a future in which they fulfill their potential – many of them have been told too often that they have no potential.
So. Where do I stand in this mix as Chaeli and Erin’s mom? Privileged to have been given the awesome task of raising two beautiful daughters. Erin’s part in Chaeli’s success is never acknowledged enough. She is the stabilising force – the sibling who tells Chaeli that she’s “just being lazy!” but who loves her to distraction and helps her more than anyone else in the world. Humbled to have a partner in Russell who puts up with a woman who is always strong-willed and often difficult to live with. Blessed to have been able to love Chaeli for who she is and not to have allowed her disability to shut her out of our lives. Chaeli has been “lucky” to have friends and family who have nurtured her in a very affirming way. But what Chaeli has added to our lives is immense. She has opened our eyes to an otherwise unseen world, taught us lessons that only she can teach and enriched our lives with her feisty spirit. In the grand scheme of things I think we’re all winners …