Jody Stewart shares the rollercoaster ride of parenting a child with a disability.
When you are expecting your first child, there is nothing that can fully prepare you for what you are about to embark upon. You can read all the books, talk to all the experts and search every webpage, but nothing is better than firsthand experience – learning as you go and trusting your gut. At the end of the day, the thing that matters most is that your child is healthy and happy.
When Harry was born we thought we were well-prepared. I was pretty dead set on getting him into a routine and breastfeeding him until at least 12 months. That all went out the window three weeks into his short life when we learned that he had hydrocephalus. When the doctor announced to us in a gentle, soothing voice that our son had this condition, it struck fear and bewilderment in both of us. What do you say to the guy who tells you your firstborn child’s brain is not working properly? What do you do with all the ‘why our family?’ questions?
The neurosurgical team at Starship Hospital explained hydrocephalus to us as sometimes being called ‘water on the brain’. It happens when the fluid that flows into the brain does not flow out again. As a result, Harry had a shunt inserted into his brain at three weeks old and again 10 days later when the first shunt failed. Andrew and I were devastated.
What do you do with all the ‘why our family?’ questions?
Looking back at that time, it all seems to blur together. There was no time to think, only act, and the few weeks we spent in the hospital with our firstborn child was a bit of a shock to the system.
Harry was an incredibly ‘easy’ baby. He slept when he was meant to sleep and has always been a very good eater. In fact, Harry probably would have slept all day if I had let him. I remember having to wake him up to feed him. I didn’t manage to make the breastfeeding goal to 12 months like I had planned, but I wasn’t too hard on myself about it. After all, a baby’s got to eat.
Harry began his physiotherapy at nine months old because he wasn’t rolling over yet. He didn’t crawl until he was 15 months old, and only began walking just before his second birthday. This stage was really difficult because of the comparison game. That first baby gets watched, poked and prodded for every developmental milestone and if he’s not achieving them the same way your friends’ babies are, it is easy to feel down and concerned. Church helped and having a community of friends who could pray and give a glimmer of hope was incredibly valuable. Especially when the common phrase we heard when we first started learning about his challenges was, “He will be fine.” When in fact, he didn’t seem ‘fine’ at all. Although he didn’t appear different from other children his age, he certainly didn’t play or interact the same way as them. I also found solace with the local Plunket playgroup – interacting with other mums who had children who were not exactly the same age as Harry was easier and less comparative. They were (and still are) incredibly supportive and understanding of Harry’s differences.
Shortly after Harry started walking, he had an incident on a trampoline and ended up with his leg in a cast for five weeks. We were so sad since he had only just started walking and we all know what a massive milestone walking is. In the end it turned out to be a blessing in disguise because the oncology department at Starship Hospital asked us to complete a developmental survey for Harry. This highlighted other areas of developmental delay, not just physical, and he was referred to the developmental paediatrician as soon as possible.
This is when the appointments started rolling in. Occupational therapy, speech and language therapy, horse riding for the disabled, more occupational therapy, developmental paediatrician and disability groups. I became the diary keeper and it was a full-time job organising and managing the places we needed to be each week - a physically tiring and emotionally tormenting task, to say the least.
We decided to enrol Harry for a couple mornings at Life Childcare Centre in order to help his social development, communication and constructive play skills, and to give me a break too. By this point my daughter, Molly, was about eight months old and so it was time for me to be kind to myself and take a break. Life Childcare and all the teachers there were swooned by Harry’s charm and enjoyed celebrating the small achievements he was making with us. It became easier because now all the therapy appointments could happen there instead of having to organise them all myself.
An Early Intervention Teacher from the Ministry of Education got signed up and Harry was given the support of an amazing Education Support Worker. Together, we all worked hard and patiently to teach Harry to use the toilet, make choices, join in with others, amongst other skills that came slowly and surely.
The common phrase we heard when we first started learning about his challenges was‚ “He will be fine.” When in fact‚ he didn’t
seem ‘fine’ at all.
When you have a child like Harry, you don’t take any developmental milestone for granted. Every small change and every new sentence is noticed and celebrated.
Towards the end of Harry’s time at Life Childcare, we applied for Ongoing Resources Scheme (ORS) funding. With many hours of gathering evidence and filling out application forms, we finally sent it in, only to have Harry declined. This felt like a major blow. We went spiralling down in despair wondering how Harry would make it at school and in life, but the wonderful people in the Special Education Department for the Ministry of Education decided we must press on and assured us he still had a chance.
With more evidence from appointments with psychologists and paediatricians, it was decided that Harry was eligible for the funding. This was a huge answer to prayer and massive weight off our shoulders and we are incredibly grateful.
The help of Harry’s team of experts did not end there. I can hardly believe how smoothly Harry was transitioned into school in 2015. The Special Educational Needs Coordinator (SENCO) at Waterlea Primary School went above and beyond by visiting Harry at Life Childcare and ensuring us that his needs will always be the main prerogative.
He was allowed to transition for as long as he needed to, but we decided he could just start full-time on his birthday and we would see how it went, and he’s loved it! His teacher is thoughtful and receptive to any input or suggestions we may have. I find this comforting, knowing I can be open about whatever concerns I might have along the way.
So far Harry has had a few play dates with classmates and although he seems happy enough, his social development is still ‘under construction’ - it takes some adult input to keep him engaged with his peers. In fact, relating to others is part of his ‘individual education plan’ at school, so I know he is working towards it and I’m certain he will get there. We see improvements almost every day.
Today, Harry still doesn’t have a black and white diagnosis. The paediatrician says he’s a bit of a ‘mixed bag’ or as I call it, ‘on the brink of a learning disability that cannot be named’. He has sensory processing difficulties and we know this because he has done countless hours with many occupational therapists, and more assessments than I can count on two hands. It doesn’t take a rocket scientist to find information about why your child behaves the way he does. In fact, it has been interesting doing our own research and using strategies from a number of different tool belts. A bit of this from the autism apectrum disorder tool belt and a bit of that from the dyspraxia tool belt etc. There is so much information out there about sensory processing disorder and this has been the greatest tool belt for our situation with Harry. Even though it is not officially a recognised diagnosis in New Zealand, it is in other places in the world and that’s reassuring. It is both unimportant and extremely important that Harry be given a diagnosis instead of being ‘unconfirmed’ and for that reason, it feels like we are walking right on the edge.
When you are given the opportunity to raise a child like Harry, whose disability is neither severe nor visible, you become reliant on and grateful for the systems available. You also become reliant and dependent on other people's kindness and patience, and become grateful for the friends who turn up and love your child, and take the time to support you on your journey of grief, resilience and joy. You learn to be kind to yourself and to your spouse. This can be challenging at the best of times, but you persist and work through it because if anything, the love that is shared is exaggerated by the constant struggle that is also shared.
At the very best, parenting Harry is something of a privilege because it’s like watching a flower opening in slow motion. The anticipation followed by small successes is rewarding almost every day - even though it is often tempered with grief.
Every morning I am reminded how blessed we are to have him in our family despite the difficulties we all deal with. Harry is funny, charming and happy. He is fun to be around and he has a kind and loving nature. What more could a parent ask for? After all, you have got to ask yourself, what is ‘normal’? And does it even matter? When your child is happy and healthy you remember that those are the things that matter most and we are grateful to have him just the way he is.
When you are given the opportunity to raise a child like Harry‚ whose disability is neither severe nor visible‚ you become reliant on and grateful for the systems available.