Not My Child – Our Journey of Diagnosis
It is instinctively ingrained in most of us as parents to protect our children and provide them with a great life. Often a better life than we had. Growing up, I’d fantasize about what this would look like. I’d be the super involved and fit Mum in my active wear pushing around my perfectly behaved children in their stroller. We’d go on regular outings and create fantastic memories with our children. We’d eat out at restaurants where our children would sit nicely at the table, use their manners, eat and appreciate their meal as we would expect nothing less from our children.
Fast forward a few years and a few kids and my reality seems somewhat different to the life I fantasized about growing up. Our fun family outings take about a year to organise, often include meltdowns and at least one of the children has no interest in being there at all. We rarely eat out together because the stress of it all seems to make it not worth the effort. But this is my reality, and I love and am so grateful for it.
Often fantasies and realities don’t quite align. One thing that never entered my fantasy of parent life was receiving a diagnosis for my children. My children would all be healthy and typical because I was. Right? Well, not quite how it turned out for us.
I have three beautiful children of which have all received vastly different diagnoses with very different journeys. Our eldest is now 12 and was diagnosed at around 10 months old with an eye disorder called Duane’s Syndrome. This all came about rather quickly and easily from our initial GP appointment, then the specialist appointment with the Pediatric Ophthalmologist leading to diagnosis. Treatment for her has included regular eye appointments, eye patching in the younger years, surgery and glasses.
My youngest child is now 2 ½ and was diagnosed just after her first birthday with Juvenile Idiopathic Arthritis (JIA). This process was a little longer and took around a month with various doctors, blood tests, xrays and finally a bone scan to determine the JIA. The journey of JIA is vastly different for each child and at this stage (touch wood!) we seem to be one of the lucky ones. The diagnosis come about from me noticing unusual movement in her legs which led to all of the above tests. From that point, she has appointments every few months with her pediatric rheumatologist, appointments every few months with the eye clinic as there is an eye disorder closely linked to JIA, a day surgery, and ongoing monitoring to observe her movements.
My middle son is 8 years old and was diagnosed about a year ago with Attention Deficit Hyperactivity Disorder (ADHD) and Oppositional Defiant Disorder (ODD). His diagnosis was probably the most draining and difficult of all three. My son is not naughty, my son is not a spoilt brat. My son has major issues with impulsivity and regulating his emotions. His diagnosis journey has been extremely challenging largely due to the negative connotations associated with these disorders. This process to reach diagnosis took many years and included pediatrician appointments, psychologists, nutritionists and lots of support from his educators and teachers at Fit Kidz and at school. Like with JIA, ADHD and ODD can present very differently for different children. My son is very intelligent, an avid reader and does not have the violent outbursts often associated with these disorders. It is the impulsivity and inability to regulate his emotions that he struggles with the most.
After a career in early childhood education and care spanning almost a decade and a half, and having many conversations with families regarding concerns for their child’s development, I still did not receive the news of any of my children’s diagnoses with grace. At all. The two words that spring to mind are probably denial and fear. Denial – there couldn’t possibly be anything wrong with this perfect child I’ve created. Fear – what is this going to mean for them moving forward?
People tend to take this news in different ways. Some feel relief as they finally have an answer, whilst others can actually react with anger – how could anyone possibly suggest anything like that. And many alternatives in between.
Having a diagnosis for my children has provided so many answers and opportunities for us. We have been able to access many support services, treatments and connect with others on similar journeys. To receive a diagnosis is not placing a sentence, but rather, opening up a new door.
Having been on both ends of the difficult conversation around potential issues or concerns with children’s development, I believe it is imperative that all parties ensure that the child’s best interest always remains the focus of the discussion. We all want each child to thrive, it is not about questioning anyone’s parenting ability nor ability to educate and care for other’s children.
Let us continue to support children’s inclusion and development together.
