Sarah-Hope's School Wheelchair race

This wheelchair race was arranged by Sarah-Hope's Grade 2 teacher, Ms Embalo. This was not a once off event with wheelchairs for the school, however, as they have a real history in inclusion. I was interviewed about our experience at Pinelands North Primary School in terms of navigating wheelchair access for the school inclusion blog:

https://pnpsinclusion.blogspot.com/2020/03/becoming-accessible.html

Becoming Accessible

“It’s the unlocked but closed door that she worries about the most” parent, Leigh Berg, is explaining her daughter’s mental preparation for moving around the school in a wheelchair. I hadn’t thought about it before, but when sitting in a wheelchair turning knobbed door handles is near impossible. An unlocked, but closed door efficiently shuts down her daughter’s independence and literally stops her in her tracks.  

At “School In Action” Day many of us parents encountered children in wheelchairs, problem-solving everyday moments from how to find a reachable writing surface whilst in the wheelchair, to how to get out to the field for lunch. Some of us parents might have received interesting snippets from our own children about what it was like to spend an hour in a wheelchair.

Adapting to a wheelchair

I was eager to find out what school life was like for children who used wheelchairs fulltime. Leigh agreed to share her reflections about her daughter’s experience at PNPS. Her daughter, Sarah-Hope, was born with a feisty spirit, a bright mind, and a body that requires much problem-solving whilst living in a world built for humans with working limbs. Sarah-hope’s arms have not developed, so her well-functioning hands grow from her shoulders. Her legs and feet have proven amazingly adaptive to take on many arm/hand functions, but their structure has also made walking on feet a challenge. Again, with determined adaptability, Sarah-Hope became an adept knee-walker.

Sarah-Hope joined Red Roots in 2018, when walking on her knees was her main method of movement, but during that year it became clear that her legs’ structure required her to use a wheelchair to transition between her classroom and other school places. Leigh remembers the psychological journey of coming to accept the wheelchair, as it meant Sarah-Hope would have to relinquish the independence that knee-walking had offered her, and grieve the fact that, in yet another way, she was “not like the other children”. It took a village of support - Red Roots teachers, her facilitator, school OT and parents - for Sarah-Hope to come to accept the wheelchair. Alongside the emotional process, there was a practical process to find the actual physical spaces where she could navigate her wheelchair. With the help of the OT, routes between the Sarah-Hope’s grade activity spaces were worked out and practice runs were done to prepare her for Grade 1.

Accessibility at PNPS

The school is a single-story building on flat ground, which lends itself to wheelchair movement. However, other intentional changes have been made too. Ann Morton, principal, explains that in 2004 PNPS hired disability consultants to conduct an “access audit” of the school. The report highlighted some immediate and relatively easy changes, which the school proceeded to implement at the time, e.g. making wooden triangles made to fit to either side of the lip in the doorway entrances for wheelchair access. However, many of the recommended changes required budget decisions. Ann ensured that the Access Audit report became a guiding document for the school’s future strategic plans and budgets, including subsequent renovations and building work. For example, correct ramps and door handles were installed in the new art room.

Ann smiles warmly as she recalls how the accessibility auditors, a blind person and a person in a wheelchair, reported their surprise at how the PNPS children were comfortable to approach them and converse with them. This embracing attitude amongst the children was not their common experience when visiting schools. We reflected upon how accessibility is not only found in the design of buildings but also in the hearts of people.

A couple of years after this accessibility audit, Adam joined the school. His reliance on a wheelchair inspired changes to sport, namely boys being included in netball, as well as the introduction of basketball and table tennis. The school play was written to include a part for his wheelchair on stage.

Ann reflects on various ways teachers adapted to include disabled children. Some disabled children, due to weakness or paralysis, require the use of nappies for toileting. Ann has stories to tell about compassionate teachers who, with maximum care and minimum fuss, changed nappies in a way that upheld the child’s dignity. Teachers have been required to make other adaptations too: wearing microphones for deaf children; rearranging the classroom seating for the visually impaired children. I asked Ann if any awareness or sensitivity training had been required to help the staff embrace children with disability. “When a disability is visible and obvious, we have found our staff respond with compassion, care and willingness to adapt; it is the invisible disabilities that remain a challenge for us all, just as they do in general society.”

Redefining weak and strong

Leigh was telling me about an experiential learning activity she had run with a youth group to which Sarah-Hope belong. They had set up running race with a twist: the children had to race on their knees with their arms tied behind their backs. The abled-bodied children eagerly participated but quickly found that the activity was both exhausting and unexpectantly painful. Leigh chuckles as she recalls how Sarah-Hope was decidedly unimpressed with her friends’ excessive moaning given that they were walking on a carpeted floor, where-as she regularly finds herself “kneeing” over stones and tar. The great “aha” moment for the children was that Sarah-Hope is not weak, in fact she is incredibly strong and determined.

It is easy for us abled-bodied people to judge another by what they can’t do, rather than understand how much they have already done just to show up, let alone participate. The wheelchair experience that PNPS arranges once every 2 to 3 years helps give children some insight into this.  

Learning through experience

Thanks to C&E Mobility, who loan wheelchairs to the school for a 2-week period, each child gets an opportunity to navigate school in a wheelchair. Ann introduced the activity during an assembly, which included enthusiastic dramatic performances by the teacher assistants to provoke the children to be mindful about how they engaged in the wheelchair experience. Important wheelchair etiquette includes:

• ask a person if you may push them before doing so
• be thoughtful to move bags and belongings out of the way of the wheelchair
• respect the personal space of the person in the wheelchair.
• bend down to talk at face level

Ann was clear that this exercise was to allow children to develop empathy for those needing to use wheelchairs, and not an opportunity for feel what is wild races and wheelies in the quad.

Ann reports that children took the activity seriously, bringing her reports on which rooms were inaccessible and needed improvements, e.g. the computer room. The experience inspired children, and teachers alike, to be proactively removing barriers to participation

Racing Together

At the Foundation Phase Athletics Day this year, Sarah-Hope’s class teacher, Suzette Embalo, arranged for one of the races to be a “wheelchair race” in which Sarah-Hope could race against her peers in wheelchairs. Let me end with the letter that Leigh wrote to Ann following the day:

I just wanted to thank you for your efforts to include wheelchairs at the FP Athletics Day this year. When Sarah-Hope and I had night time cuddles on Saturday night, I asked her what her favourite part of the day was. She hadn't said much until that point. But her whole face lit up and she said "RUNNING! I love to RUN RUN RUN and I wish I could do that every weekend". For a child who can't walk on her feet, to have the thrill of 'running' with her classmates was just incredible. She did also say it would have been great if all the children had left their wheelchair brakes on so she could have beaten them all:)

My heart had sunk in January 2019 when Sarah-Hope told me 'Mom! Mom! I'm going for an Athletics trial. My honest response was how do we get you OUT of Athletics day, not INTO it! For the first time in my life, I got to arrive at an event having had nothing to do with how Sarah-Hope would be included in it. I just stood and watched her bravely line up and 'run' in her wheelchair to the cheers of the families present. Having a school space where inclusion can be tried and tested, can fail and reinvent itself, changes her experience of the world and gives her confidence to face it (and us too). What an encouragement!

Depleted as Grade 2 starts

At the end of 2019, Sarah-Hope seemed very depleted. After getting sick in December 2019, bloods were taken which revealed she basically had no iron in her body. She had been absent for a good chunk of the 4th term at school, much more than normal.

I had assumed it was her lung capacity making her tired easily - but after consulting with the paediatric pulmonologist it was actually low iron. She was irritable and exhausted which made going to school or therapy difficult. It was hard to come to terms with the fact that her health was becoming more of a barrier to accessing school than her disabilities. Her limited energy was also a barrier to the progress we could make with her mobility and positive socialisation.

Sarah-Hope had an iron transfusion to top up her iron stores before school started. It had been a while since Sarah-Hope had had a procedure like this. She was most concerned about the pain of the needle - and I took this as a beautiful sign of normality after the countless needles and transfusions she has had to endure before in order to survive.

The hospital ward was empty that day so we snuck Libby in - the girls had such fun, I was barely allowed to disturb them. They can truly play anywhere!

We were determined to set her up for success at school as she was looking forward to Grade 2 with Ms Embalo. 

Sarah-Hope appears in Kuier magazine

 

 

 

 

 

 

 

Additional mobility devices - From Sindi to Zane

What we were learning as a family is that even though the electric wheelchair is amazing, we need a back-up. Not just for when the battery gets low, or if it needs a service when a certain little racing driver lands up knocking off certain parts of her chair in the course of her adventure...

The problem is access. 

Firstly, in order to go somewhere with the electric wheelchair you need to have your vehicle with it's ramp. The chair and battery alone is 70kg. You can break it down and rebuild it again but it still likely requires two adults to get the parts in and out of a regular boot. 

Secondly, you need a secure ramp that can take the weight of the chair and Sarah-Hope. 

Thirdly, you need the venue that you're going into to have enough floor space and spacious corners so that you can manouver around. 

But often these three criteria are not all in place. So either Sarah-Hope must be carried, or you need an easier back-saving option!

We came up with the idea of a basic ride on toy (just like the way she would use a plastic motorbike to wheel around). 

Sarah-Hope's physio, Kirsty Williams, went to extraordinary efforts to get this cow from the Eastern Cape! Her name is Sindy. But Sarah-Hope was too tall for it... so we asked a friend to give it a long neck. 

Now we just needed Sarah-Hope to buy into the whole thing... she was more into horses... so Kirsty added a mane and a long tail... and then with the long neck it became the COW-HORSE-GIRAFFE. Brilliant!

With all these devices, other children often want to jump on and ride them. This does make Sarah-Hope rather anxious as the device is effectively like her crutch - she knows that if anything happens to it she then will need to move around on her knees. 

As Sarah-Hope grew taller, and Sindy's neck couldn't be extended any further, we needed a new plan.

From the Warrior on Wheels Foundation, we met fellow special needs parents, Derek and Tracy Boshard, who started making 'freedom walkers' for children locally. Sarah-Hope wouldn't manage one of those as she can't hold her own body weight without long arms. So we asked Derek if he'd consider designing something specifically for Sarah-Hope.

He came back to us with a design for a 'freedom cart'. It has a seat and handlebars she can reach, she pushes it along and it even has a basket at the back for her special doll, Vredehoek. Being made of blue PVC piping, Sarah-Hope decided that it was a boy and he was given the name Zane. 

 

I assured Derek that what we needed was something that we could use indoors... in a large home or along a corridor etc... the buildings that we couldn't get a wheelchair into. But Sarah-Hope found it so transformational that she soon started taking Zane outdoors. It took her a moment to get used to the vibrations on her little hands as she traversed bricks and tar... but falling in love with movement and the joy of being able to move her body around, she got used to it. 

 

I don't think Derek was prepared for these videos though:

Zane seriously made his way into Sarah-Hope's heart. We planned his one year old birthday celebration and even invited neighbours for the occasion. There were decorations, gifts and cake. We had to take a moment and acknowledge how Zane had changed Sarah-Hope's life. She made a speech, but we didn't sing because Zane is a bit shy. 

We have had to do some repairs and maintenance on Zane but that is the genius in how he was made... with modular and inexpensive parts. So hoping this guy continues to be part of our life going forward!

Facilitating Sarah-Hope through Grade 1

Sarah-Hope had a remarkable woman, Faye Amorosino, as her facilitator in her Grade 1 After the first five months with her, she wrote the following about Sarah-Hope:

Meet Sarah-Hope. 

7 years old with a sincere love for bunnies and horses.

She handles her wheelchair better than any race-car driver and although she may struggle with some daily stresses, she is very, very brave. 

She loves reading and surprises. 

When you first meet her, she speaks in an almost adult kind of way, like matter-of-fact and to-the-point.

But if she senses some genuine part in you, you may have the pleasure of hearing the quietly spoken (and sometimes sarcastic) jokes. 

Her world is different. It requires a lot more inner strength than most 7-year-olds her age. 

There are some days when I can feel her fear, and other days when I am swept into the blissful joy of an innocent child's delight. 

Sarah-Hope has been my focus for the last few months as I have taken on the role of an educational facilitator at a phenomenal 'inclusive' school in Pinelands, Cape Town. 

Sarah-Hope has been teaching me about what HOPE is. 

Our lives so often feel like one big, blurry, rushed and chaotic cloud of not-enough-time dissatisfaction. 

But we can change all of that. 

Sarah-Hope is challenging me. Daily. 

And I'm so grateful to have met her. 

So proud that I get to assist her. 

So humbled by her story. 

 

 

Adaptive surfing

This surfing adventure was offered to us through the Roxy Davis Foundation, via Warrior on Wheels:

To the amount of volunteers needed to make these kinds of opportunities possible - thank you!

Imagine bumping into Pam! What a celebration!

 

Richard's thank you note to the Roxy Davis Foundation

Dear Roxy, Ant & team

A short email to say a massive THANK YOU for including us in the Adaptive Surfing clinic yesterday.

We came to watch Sarah-Hope and Libby's cousin, Katelyn; and to scout out whether this was something Sarah-Hope could participate in next time. On the way to the Berg she started asking some very leading questions - which made me realise that she was not interested in a recce but wanted to get in the water. I was seriously worried about how this was going to play out - one parent, two kids, one in the water, one on the beach, the fact that we hadn't booked, or that both of them love water but aren't at all confident around waves.

I'm still completely floored by what we experienced.

We were welcomed, encouraged, supported and celebrated by a group of people who epitomise what it means to share the stoke. And are doing that for kids who literally wouldn't be able to access it without their incredible generosity. A special shout out to Nasiera. My girls usually take a long time to warm up to anyone new but they felt so at home. They absolutely loved it and cannot wait for the next time.

It also meant the world to me that they got to experience this together. Libby just can't get over the fact that everyone was cheering for her as she zoomed along.

On a personal level, I used to work in the surf industry (I was at Atoll Media, who published Blunt, Zig Zag and Saltwater Girl) but have hardly surfed since Sarah-Hope was born. To be in the water, with both girls at the same time, when they each caught their first wave was utterly profound and deeply healing.

I can't thank you enough.

Richard

 

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Roxy Davis Foundation Response  

 

Afternoon Richard,

Thank you for your very touching email!  

I believe most of the thanks should go to you, Libby and Sarah-Hope. The Berg Family courage and determination were key in making the afternoon such a success.   Thank you for taking a chance and joining in - Sunday afternoon again showed us that together many small actions can make a huge difference -  a group of volunteers arrived at the beach, a quick briefing and the next thing fun was being had in the waves by one and all! At one point there were quite a few passersby's who had stopped to enjoy in the magical moments.

I don't think Roxy or Ant could have wished for a better experience! We look forward to sharing many, many more with you and your family.

I'll be sure to share your email with Nasiera - your are spot on Libby and Sarah-Hope connected with her on a level I have not seen before - beyond heart warming.   

Take care and we'll see you on the 22nd of September if not before!

 

Further Discoveries about Sarah-Hope's anatomy driving mobility challenges

With the 'writing on the wall' regarding Sarah-Hope's mobility, I reached out to the Children with TAR Syndrome Facebook group. In the first five years of Sarah-Hope's life, I didn't ask to join the group - it was enough coming to terms with our story, and I certainly had no capacity to deal with other stories. Sarah-Hope's medical and therapy team knew her case well, and after burning out my research capacity during my pregnancy, I enjoyed the simplicity of just doing what I was told. 

But we hit a brick wall with Sarah-Hope's mobility. I had seen every paediatric orthopaedic surgeon in Cape Town and while I agreed with the conservative approach in terms of surgery, it was very difficult to get direction from surgeons for the physios who were wanting to strengthen Sarah-Hope's ability to stand without inflicting damage on her joints. In all fairness to the surgeons though, with such an unusual anatomy, there is little one can predict as to what the impact will be of any particular intervention.

Most of the families with children with TAR Syndrome who pursue surgery either go to Dr Dror Paley or the Shriners charity hospitals in the USA. I got in touch with Dr Paley for an opinion on Sarah-Hope. In addition to X-rays, video footage of Sarah-Hope moving, he said he needed an MRI of her knees, and 4D reconstruction CT scans of all her limbs. The MRI of her knees alone took three hours, which should have been a clue as to the complexity of her anatomy! It was quite astounding to me that no one locally had actually taken this step to find out to clarify what was happening inside these legs of hers - and it was a big blow to discover. It was confirmed that Sarah-Hope has no knee caps, no cruciate ligaments, her tibia and fibia are rotated as a start... Dr Paley recommended a complex reconstruction surgery which would have required us to be in the USA for a few months of rehab after the surgery. He didn't mention follow up surgeries but from tracking other stories, it is very likely that as the child grows, additional problems emerge which then require further intervention. So starting on a surgical route would mean it would be difficult to get off it. I was also concerned about the transfer of knowledge from the rehab therapists in the USA to local ones to sustain the work achieved in the surgery.

Family contacts helped us to get in touch with another orthopaedic doctor in the USA for an opinion - I was so well served by this wisdom: "the decision is more important than the incision". The doctor was referring to the decision to pursue surgery for a child being one that needs holistic consideration from the whole family. We were also encouraged to investigate the Texas Scottish Rite Hospital for Children. 

Going ahead with the surgery that Dr Paley suggested was not an option in terms of cost. Just the first operation / stint in the USA would require us to sell everything we own and we knew that the quote didn't include costs related to any complications that may arise in the operation which we would be naive to think may not arise. We were realistic that as soon as you start the surgical route, it is difficult to get off it. I was also concerned about the amount of time that Sarah-Hope would need to be out of school for surgery / rehab and how this would impact her schooling and our family life.

I arranged an interdisciplinary meeting with a local paediatric orthopaedic surgeon, physio and orthotist to discuss Dr Paley's report. I had to smile at the suggestion that the USA surgeon was both a "genius and manic"! We discussed that we should look to see how we could get Sarah-Hope back on her feet again, even if for just standing transfers. A standing frame would help with this, as well as braces. And so we got the ball rolling on that.