Saturday, 19 December 2020

Steady and Fetch - Sarah-Hope's new legs

The year started with us looking into fascia release for Sarah-Hope. One of the wonders of her early years was the natural adaption of her body. One of the scary things going forward into her primary school years is how these adaptive patterns of movement have placed so much pressure on her body and how this can increase physical abnormality if you don't intervene. 

The main problem with her legs is that she has been knee walking and doesn't stand on her feet other than for a quick transfer... her hamstrings had become so contracted that her knees couldn't straighten much more than 90 degrees.

The fascia, sheeth around the muscle, gets knotted and doesn't allow the muscle it's usual freedom. It can be rather painful to release but it is so important for the body - not only Sarah-Hope's legs but her back and neck too with all the bending and reaching they do without having arms to help. 

A new physio had started working with Sarah-Hope in lockdown and trained Richard in this massage since he was now working at home. Every week she was blown away by how Sarah-Hope's body was responding to Richard's massage.  Literally, the angles of her knees were changing!

We also had to try wake up her quads and get them working again...

She also started working with an orthotist to get a full leg brace, with metal hinges made. This would provide fuller support for when she stood in the standing frame. There was also the idea that she may need to wear these at night, or for four hours at a time so that her skin could stretch. 

I have always been resistant to this idea because I couldn't get my head around fighting with Sarah-Hope at night to have braces on when I just want her to sleep peacefully... or strapping her into a stand for hours. To be honest this has come up before - the idea of Sarah-Hope being in full leg braces - and I have probably resisted it the most. 

At the start of lockdown, she was struggling to stand for 10 seconds... and five months later, due to physio input and Richard doing regular fascia release, she started walking!

Here is a video that Richard put together of her progress made from May - September 2020:





Once this incredible milestone was reached, we wanted to make the most of it! Walking for a minute or two inside was easy enough with level ground. But what if Sarah-Hope wanted to walk outside? Given the uneven surfaces and how tiring it would be to build up this capacity, the physio recommended we get a grillo walker to support her. 

It arrived just in time for our December trip to Knysna. Cousins Katie and Nicola were so sweet partaking in this daily walk with us, and even helping get her orthotics off her at the end.





 


Friday, 4 December 2020

Knee races to celebrate Sarah-Hope turning 9 years old

Sarah-Hope knew exactly how she wanted to celebrate her 9th birthday. We were going to play games. Games on our knees! Everyone should have a turn to race Sarah-Hope on her terms...

We had an egg and spoon race, and some relays on the grass at Granny's house. I'm not sure why I was so surprised but Sarah-Hope smashed her able-bodied friends! Her stability on her knees and ability to balance is astounding. She certainly has to practice it everyday, but it still isn't easy!

You go girl!



Tuesday, 12 May 2020

New diet, new life!

Lockdown played a trick on me. I had actually been on cooking strike for years... truly... all the gut issues had sent me over the edge and far away from the place where I thought about providing a family meal. Sarah-Hope lived on oats, biltong, peas, sweet potato and butternut&carrot squish. And also more oats. 

But with Sarah-Hope's iron having been so low at the start of the year, we realised that the problem wasn't just getting the iron into her body... it was her body's capacity to absorb and use it. 

We decided to go a new route and consulted with an integrative GP. We did an organic amino acid urine test which confirmed that there was more fermenting happening in her gut than actual digesting. Her ability to take in fats in particular was worrying, as this is what would provide a more sustainable source of energy. 

So we started a new diet, with plenty of supplements, with the aim of seeing her gut healed, and food absorbed so that she would once again look like a well nourished child. Although oats and butternut and peas might typically be seen as healthier foods... they weren't for her at this point. Her diet was more 'keto' in the morning, and she was allowed some carbs in the afternoon. 

There was (and still is!) a lot of cooking required. 

Breakfast -  Egg and broccolli / cauliflower / marrows for breakfast (oats twice a week with crushed nuts)

Snack - Sweet potato, animal protein, green veggies

Lunch - Same as snack

Afternoon Snack - rice cakes and avo

Supper - White rice, veggies

Only two fruit a day.  In fact, if she needed a snack and I tried to give her fruit she'd say, "Mom, I'm only allowed two fruit a day and I've had my portion." So no short cuts for me!

Breakfast and Lunch were to be followed by an intake of MCT oil through her stomach tube. We started with 0.5ml and a few months later we were on 7.5ml so there was real improvement in her fat intake and her energy was fantastic! She was lasting a whole morning at school now, and her hair was growing and getting thicker. In fact, Sarah-Hope's diet seemed so revolutionary that Richard is now on it too. 

But the most beautiful thing about this... now that we were actually cooking... and sitting down and eating together... was what this was doing for us as family. Being nutritionally and relationally nurtured is amazing. Have even had it written on my blackboard on my kitchen window...

nurture 

nourish

connect

invest

flourish





 





 

 


Wednesday, 15 April 2020

Pandemic schooling

During the second term when schools were shut due to lockdown, I took the opportunity to bring Sarah-Hope over to the primary school in town where Libby was. It was definitely going to simplify my life logistically by having Sarah-Hope there although there were losses too (e.g. not a wheelchair accessible campus etc). But the remote learning term gave me a chance to transition Sarah-Hope to a different curriculum which was a gift. 

Apart from any of the three of us devolving into tears at various points in the remote learning phase, it was wonderful to get right into learning without the logistical barriers of accessing school with devices and arranging for support to be put in place. I could see that without all these logistics Sarah-Hope had more brain capacity for the actual academic learning. And I could finally sit and actually read with her and do some homework. 

As it became clear that schools were going to reopen, I had to sit with the sense of dread regarding Sarah-Hope getting sick. She already has existing lung damage so does fall into the category of more vulnerable children in terms of COVID-19 and the thought of her having another physical set back was awful... especially at a time when we were regaining ground in her academics. 

After a comforting consultation with the paediatric pulmonologist, we started school. There were only 10 children in the class and she started school right in the peak of the first wave - everything was masked and  sanitised and you weren't allowed to move from your desk... this suited her perfectly! As with many children, 2020 with no flu season was her healthiest winter ever.


Sunday, 1 March 2020

Cape Town Cycle Tour 2020

In 2019, we had signed Sarah-Hope to ride in a Warrior on Wheels buggy for the Cape Town Cycle Tour. There were training rides and buggy fitting sessions and briefings all in preparation. Unfortunately, the weather was wild and the organisers requested those pulling buggies to withdraw, which our team did. Libby had completed her 4km Junior Cycle Tour the week before and Sarah-Hope definitely felt cheated! I sensed that she didn't want to leave her next medal to chance... and that she wanted to use her body to get around the track, even if it meant a much shorter distance! 

And so in 2020 Sarah-Hope did the 1.3km Junior Cycle Tour on Zane and LOVED it! One thing I have learnt about her - she is not one of the children who want to be pulled along by someone else. If she has the energy, she will be out there moving herself!


Here is a picture of Sarah-Hope in her buggy as part of her preparation for the 2019 Cycle Tour (which she didn't participate in after all).



And, of course, the girls created their own buggies for their dolls!


 


 

 

 

Friday, 7 February 2020

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!

Monday, 13 January 2020

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.