Just the right time
to start school
For years I have dreaded the school journey – the research
required, the conversations, knowing that you’re challenging the system and
pushing people out of their comfort zone. Having engaged and researched so much
during the pregnancy, when we still had no diagnosis or certainty that Sarah-Hope
would even survive birth, I felt as if I had kind of burnt out from it all! I
decided that I would not waste my time reading up about different scenarios,
but would rather trust the analysis of the team who were examining my exact and
very unique case and do as I was told! I had questioned and challenged the
doctors enough and began to relax and trust them. Now that I had a child to
look after, I couldn’t spend hours doing research, I needed to engage with her.
And I found being present as a parent all consuming. But the journey of
navigating social barriers and finding the right educational opportunity for
Sarah-Hope was something I needed to really apply myself to as she exited the
toddler years. I needed to find strength for this new leg of the journey!
I started 2016 feeling exhausted and knowing I needed more
support. At various stages during my parenting journey I would go through cycles
of very extended support from my community and paid helpers and then finding
the capacity and confidence to manage the girls on my own until that plan
necessitated readjusting. Two months before January 2016 we found out that my
dad was terminally ill. We knew that doctors couldn’t do anything for him, but
did not know how much longer he had left to live. It turned out to be five and
a half months. During that time, we pulled together as an extended family, had
intentional and important conversations about matters from eternal to financial,
spent as much time together as possible, and treasured the time to say goodbye
and honour his life while he was with us. With my mom caring for him and then
alone and herself needing support for this significant life change, a major
pillar of our support system had been shaken. And I knew we needed extra
non-family help. This made me enrol my girls at a local school for two mornings
a week. A friend had told me about a little Charlotte Mason based school which
had started in Gardens the same year and after meeting the teacher I knew I
didn’t need to look any further. She didn’t know what to expect from
Sarah-Hope, but said “we would love to have her, and appreciate the diversity
that she brings”. That was all I needed to hear! With that welcoming attitude,
we could figure the rest out! Because of Sarah-Hope’s health challenges in the
previous two years, I had been grappling with whether to homeschool but as a
teacher friend said to me – as some point you are going to have to take that
brave step and leave her side. I decided to send both Libby and Sarah-Hope
together to the mixed age group on the same two mornings for the first term. I
needed the opportunity to have time to support my folks without the kids
around, especially as my dad got more frail. I only stayed a couple of mornings
before Sarah-Hope informed me that she wanted me to drop her off like the other
children and pick her up at the end of the day. She had worked out that the
teachers were there if she needed help and felt quite comfortable with that.
Health hurdles
A couple of months later though, she started feeling ill and
separating from her at school was difficult. She had much less energy, she was
on her feet less and so whenever movement was required, she would ask to be in
the teacher’s arms. Libby would follow suit and want to be held. I contacted
her doctor and dietician – and since she was less energetic, had a moderately
inflamed gut and only wanting to eat very bland foods (such as oats at every
meal), it was suggested that we start tube feeding her Modulen IBD (for Crohn’s
diease) to supplement her calories – it was the first time in about 18 months
that we used her mic-key button, but thank goodness we had not taken it out!
However a few weeks later, another tummy bug had gone through the house and she
was flattened. She couldn’t sit, could take minimal fluid / milk through her
tube, and after a few days she was admitted to hospital. It was then apparent
that she really had lost weight in the previous two months. What proceeded was
a difficult few weeks in hospital. Sarah-Hope was an absolute star but was
starving and was struggling to absorb even the gentlest formula. We moved to
continuous feeding within a few days, but every time we increased it beyond
10ml an hour, she would battle despite what medications were used to assist. About
two and a half weeks into the hospital stay, she had a scope and a line put in
for IV feeds for 10 days. We let her eat low residue foods orally should she
desire. She ate the hospital out of gem squash, often up to 9 egg whites a day
from the hospital cafe and some good portions of plain mince and fish. She was
discharged when her condition got to a place where we could manage at home but we
had no real insight as to what had caused her decline or plan for the way
forward.
The dietician and surgeon referred us to a paediatric
gastroenterologist who they had worked with at another hospital who had
recently started a private practice. Sarah-Hope was admitted for testing for a
further two days. The specialist’s sense was that the gut issues are caused by
the cow’s milk allergy associated with her underlying condition, TAR Syndrome, even
though no test results have ever proven that. And so a strict milk-free diet
was recommended, along with tube feeding with Neocate Junior for 12-18 months
with pegicol sachets twice a day to help with constipation (as evidence of this
was also found in X-rays), L-glutamine and L-arginine for gut healing and Losec
daily to help with reflux. I was extremely nervous to start tube feeding her
again because of how time consuming it is, but starting with quantities of
30ml, we worked it up to two bottles of 180ml per day over some weeks.
Mobility challenges
and implications for schooling
Sarah-Hope’s appetite and eating were up, but she struggled
to get back on her feet after hospital. The paediatrician was concerned about
the appearance of her legs and knees in particular and after some X-rays and a
trip to the orthopaedic surgeon and physio, it was confirmed that although
genuine weakness after the extended hospital stay was the reason she could not
walk initially, there was always global knee instability. It did not look like
we were going to see her walk much without an intervention. Night braces were
prescribed and made. It’s interesting to reflect – about a year before, a
physio had said to me she thought a particular method of plastering and bracing
could help with Sarah-Hope’s legs and feet. When I googled it, I was horrified
and couldn’t imagine having to watch my child struggle like that. Suddenly a
year later, we’re in a position that unless we intervene, Sarah-Hope might not
walk. And so I quickly became ready for braces. Amazing how you have the grace
for a situation when you really and only when you need it! However, in our
favour is the fact that Sarah-Hope does not have arms. And so if you put braces
on her legs she really loses most function and independence. Aware of this, the
doctors are conservative. And so wearing braces at night only was prescribed.
And we managed it for two months until our follow up appointment.
When we went back for a check up, the orthopod was impressed
at Sarah-Hope’s ability to walk again. He hadn’t said it to me at the time, but
he had assumed that she wouldn’t be able to walk unless she was wearing braces
to help keep her legs in better alignment. This was encouraging. Sarah-Hope
seemed to be getting more energy from her diet and was getting stronger on her
legs again. And just to prove it – without indicating any interest in it
before, on the last day of her third school term, she climbed up the ladder and
onto the top of the jungle gym all by herself. Had obviously been watching her
school mates do this all year and working out how she was going to do it!
At the beginning of that term, however, despite missing being
at school so much, she did not want to attend. She said the boys are wild and
she can’t move out of the way when they run around. Now, just to clarify, the
class of 12 children has at most three boys who are totally fabulous but
obviously provide a bit of boy energy in what is a very spacious and relatively
calm class environment. And yet, just that added uncertainty about somebody
moving close to her made her nervous given that she may not be able to get out
the way fast enough. This made me really question myself – everything in me
felt that a rich curriculum in a mainstream environment was what I should
expose her to – but after this physical setback it appeared as though I was
totally underestimating how intimidating it was for her to be in an environment
as someone less able to protect herself. Around that time I got a call from
Vista Nova who had her on the waiting list for assessment asking me if we were
still interested in being part of the application process. The Red Cross
Developmental Clinic had referred her to Vista Nova, so we had that option to
consider. I hadn’t been ready to engage with it at all, but given the timing of
the call I said that I was definitely interested – I knew I had to really learn
from those who accommodate the mobility-challenged as this was becoming more of
a reality for us.
Unfortunately, the weekend before the week-long assessment
at Vista Nova at the end of October, another tummy bug had gone through the
house, and Sarah-Hope was ill again. Struggling with pain and nausea, retching,
vomiting and diarrhea, her mobility declined, she fought against me putting any
milk in her knowing she would be sore and unwell. It was a struggle to get her
through the assessment, just because she was so obviously unwell. Fortunately
the school were so understanding and accommodating and allowed me to be with
her for the first three mornings. This allowed me to keep up with the tiny tube
feeds that give her enough energy without making her too ill, be able to
protect her in the classroom and playground from others as she was hardly able
to walk or move herself, and help her feel comfortable with the environment
before I had to leave her for an assessment without me. It was here that we
were advised to investigate a motorised wheelchair for Sarah-Hope. This was
Sarah-Hope’s first year in a school environment, and while a year before I
thought we needed to be aiming simply to adapt her environment for her to
perform tasks, the extent of the health setbacks and the impact on mobility meant
that the reality of a wheelchair for school was getting closer - to take the burden
of transport off her body, to preserve what she can do for the independence and
function that is most important to her, and to give her independence. And so,
after much consultation regarding the wheelchair specifications with OTs,
physios and other experts, a pink motorised wheelchair was ordered to arrive in
2017.
But that is not all that she needs. Sarah-Hope is not
wheelchair bound, thankfully. She will come out of her chair and sit with other
children on the floor or at a desk – in fact she should be in the position that
will most enable her to participate. Being on the floor means that she can use
her feet to help reach certain items, for instance. And so flexibility is
required. But as much as one can explore different ways of doing things, there
is also the reality of a time constrained life that one with a disability and
health challenges has. At one point Sarah-Hope asked me if the lady who was
helping us at home could come to school with her. While we had wanted
Sarah-Hope to learn to be “one of the children in the class, wait her turn
etc”, she has less quantity of play experience simply because of her physical
difficulties. I thought this was a good idea because the helper could continue
with the small tube milk feeds during school hours, help her with toileting, as
well as add a layer of protection in the classroom / playground. This seemed to
go well. Sarah-Hope told me that she had put on something from the dress-up box
– not being able to dress herself fully, this was obviously one of the things
that she watched other children do all year but never really got around to
herself. The teacher commented that Sarah-Hope seemed to be more comfortable in
the class when she had the additional support. A couple of years ago, an OT
friend of mine said the best way to start in school is without help, and then
to add in the support that is actually required. I suppose this is what has
happened this year without that being planned. And for that I am grateful.
And so, for the school journey ahead, I assume that a
wheelchair and facilitator will be required. I do think there should be times
when a facilitator is not around for her – those skills of thinking ahead and
fending for herself are also important to gain once a level of confidence is
reached. But this reality, although not being what I might have imagined a year
or two ago at all, is settling in, and at least giving us some constraints to
work with on the journey ahead.
Sibling strain in the
context of ill health
At the start of the year, I felt comforted by the fact that
Sarah-Hope and Libby were at school together. They play beautifully and so I
knew they could play together there, as they were settling and getting to know
the environment and people. During the month that Sarah-Hope was in hospital,
Libby attended school most mornings. This helped us with logistics as I could
drop her off, go to hospital to relieve Rich who spent most of the nights there
and have a quick check in with him before he left to pick up Libby and look
after her for the rest of the day. Libby didn’t argue for a moment – she was an
absolute star and totally understood why she was going to school most mornings
during this period. We also heard from the teacher that she was now for the
first time actually engaging with other children at school, moving more, and
flourishing in a way that she didn’t when Sarah-Hope was around. It was
sobering. The months after Sarah-Hope came back from hospital were tough. Libby
had had enough of holding it together and threw tantrums galore... for months.
She really wanted to get some special attention – and given that Sarah-Hope had
been in hospital for weeks and during this same year her father was admitted to
hospital 9 times, she felt she was missing out. “Mommy, when can I have an
operation?” she asked? During the second term I was planning on sending
Sarah-Hope to school one morning on her own in addition to the two mornings
with Libby. I wanted to use that morning to give Libby some individual
attention which I have never really done other than in her first few months of
life. But Sarah-Hope fell ill and so we didn’t manage more than a couple of
mornings alone. One week she got bronchitis and I stayed home with her while
Rich stayed on with Sarah-Hope at the hospital. She loved being home with me on
her own. But I also didn’t want her to think that the attention you get from
being unwell is that which should be sought after. On another occasion, I took
her to the GP to be checked out. Apart from some pain meds to manage a minor
temperature, she was given the clear and I said to her, “Libby, are you well
enough to come on a special outing with mom?” She said she was. And we had a
wonderful morning together. So I’ve tried to show her that she should never
wish sickness on herself, as it is much more fun to be strong enough to go out
for a special date than going between doctors,
therapists, pharmacies and hospitals. One of the hardest things to see
with the chaotic health year we’ve had was the impact on Libby – obviously
emotionally as she had to be shipped off to babysitters often but also the impact
of an energy and mobility constrained family – she began facing challenges in
her gross motor development simply because she is a highly visual learner and
copies her sister’s movement patterns. Even her teachers reported that she
worked very close to her body, as if she didn’t have the reach that her long
arms provided her – which we assume is because she copies the way that
Sarah-Hope works. She might take an item off the table using her mouth, catch a
ball with her feet, not climb or swing on a jungle gym – but the more time she
spent away from Sarah-Hope this improved. And so although I felt their relationship
was beautiful and was so touched by Libby’s empathy and ability to play on her
sister’s physical level, my heart broke at seeing this healthy and fully-bodied
child so unexposed to and growing in age appropriate ways. I mentioned this to
a friend of mine, saying how the school journey had been a good support because
I appreciated that another adult in Libby’s life had actually noticed that she
could barely kick and catch a ball (not like much of that happens in our
house!) and I was finding this difficult. My friend reminded me that Libby is
growing up in a very unique situation whereby she is developing such
understanding and compassion for others – and that she would gladly trade the
ball skills of her boys for those character qualities! So for all our lack of
getting to teach Libby how to swim, ride a bike or even swing on monkey bars...
we have to appreciate that she also has a very unique set of challenges. And
that her emotional resilience and other aspects of development are also subject
to the constraints of our household, as well as the riches. What I had found
challenging at home was that whenever Sarah-Hope wasn’t well and needing more
holding and picking up – Libby wanted the same physical attention. And there
was so much screaming from Sarah-Hope being unwell, and then Libby screaming
for attention, that just for my sanity I picked up and carried those girls
again and again. I am certain that Libby would have far greater walking stamina
without these months-long periods of illness and recovery in which mobility was
really impaired – and most certainly if I had fought it but I didn’t. I also
found that Libby wanted help in the same way that Sarah-Hope needed it. Libby
would marvel that her three year old friends were putting on their own socks!
When she felt loved and adored, she was happy to help and do things for herself
– but when she wasn’t getting that sort of attention, she would refuse to walk
/ feed herself / dress / help around the house etc. It was exhausting. Because
the year was one in which Richard and Sarah-Hope were very physically weak, we
needed to give them plenty of support and time to recover. But I also wanted
home to be a place where Libby could find generous support, a place where it
would ok to ask for and receive help. I didn’t have the energy to explain to
her that she needed to help me around the house while her father and sister
literally were lying on the couch week after week! When playing with a friend
of mine recently, she suddenly shouted at Sarah-Hope, “I’m not a grown up! I am
still little!”, and another time she said to me “Why are you making me go to
school all these days, I’m exhausted and I cannot do that right now!” And at
other times she would simply regress into an 8 month old and crawl, bump into
things and babble.
Sarah-Hope took months to recover, and I didn’t know whether
to just relax into these stretches or try discipline my kids to stop the
moaning. I didn’t know whether I had really taken the time to love Libby and
see her before coming down on her behaviour and disciplining her. I was just
confused. At the same time, although Richard was supposed to have healed from
his operation earlier in the year, it became apparent after 4 months that it
had not been successful. He had started a new job but was regularly taking time
off to go to hospital and still had another two operations that year. I knew I
couldn’t ask him for any help – he was barely managing to get by every day and
had to apply himself in his new work space. I had no confidence in Sarah-Hope’s
health either. I became anxious – unsure who would be in hospital next and felt
powerless to plan or do anything that was important to me.
Holding on but ending
the year well
I went to see my pastoral counsellor and told her that I
thought I should do a redemption group (intense Bible study journey in a small
group community) study on powerlessness! She told me that she would not allow
me to do it unless I got more assistance at home and started exercising again.
I organised this within 24 hours. Every day I would try leave home, do
something that was kind to my body, read the Bible and pray. Just having some
space from home and the opportunity to do something that would assist my future
capacity to deal with it, helped me move forward. I went for a couple of
massages, lynotherapy, pilates, swims, walks and even a few runs in the next
months. Clearly I had forgotten how wonderful endorphins are! And by the end of
the year I felt better than I had a year ago.
We went away for our first Christmas holiday in Knysna
without Oupa around. It was a tender time, scattering ashes in the Knysna
lagoon off my dad’s beloved and legendary boat, Vlertjies, and experiencing his
absence in the spaces and relationships that he had built over decades. Amazingly,
we were all in good health and able to enjoy the place he loved which felt like
an appropriate way to honour him, which we will continue to do.
