Jessie Moss has written for The Spinoff Parents before about her daughter’s syndrome and her quest for a diagnosis. Here she writes about a new stage in their lives – how she and her partner will tell their precious child about her differences.
When we received our girl’s diagnosis last year, we didn’t tell her.
Neither of us queried whether we’d fully explain it to her or not. We both assumed that we wouldn’t for the time being. She’d just turned six and the list of compartmentalised issues on report was long.
It is a rare nameless syndrome, comprised of several medical complications as well as affecting her physical development and learning.
Although we’ve discussed the big ‘disclose’ several times since, a year has now gone by and she only has the information about her operations.
It doesn’t sit comfortably that so many people around her should know every detail about her syndrome. We all discuss it together; teachers, specialists, family and friends. Yet she remains in the dark. It feels wrong.
But what, when and how do we explain it all to her? What does she need to know about her own biology right now, and what does she already know about herself?
Well, heaps. She is herself. In many ways she knows more than us. But kids don’t have a huge amount of self awareness at this age, and they also don’t understand how much we know about them.
Like how we know what their sneaky face looks like, or that we can tell when they are feeling completely overwhelmed in a new environment. And when their feelings have just been trodden on and they are desperately trying to smile through it all to some bully, while that little brave-hurt-feelings face is just killing us.
As the year has worn on, we are discovering that she needs to know more now than we’d anticipated. School is hard, socialising can be touch and go, and regulating her emotions is hard work for her. We can see her struggling, and want to support her as best we can.
I’m aware we are hesitating and delaying, so what do we have to consider first?
We all perceive ourselves in relation to others. For seven year olds, the comparisons are about jungle gym skills, who can write a long story and answer questions at maths time. Who has what in their lunch boxes, and who goes to who’s houses for playdates.
It is also important to know that life for seven year olds is very emotionally driven.
The latest brain development research and older philosophies like those of Rudolph Steiner agree that while children of this age have mastered many of the physical skills necessary in life, they are still unable to critically analyse the bigger ‘whys’ of the universe, such as how each child learns on their own path, and why so-and-so won’t take turns or include them.
They do however have many skills to express themselves and their own subjective experiences – often in dramatic and emotional displays. But they can struggle to make sense of these along side others.
Although skills like friendship making are steadily improving, this age group remain incredibly self-focused. Much of their experience is understood and perceived as because of them and how they are, their skills, abilities or lack thereof.
This is the age where self-image is really honed, where self-worth is measured.
Seven is the time we decided we were bad at ball sports, we can’t sing, or that our family is poor because of who we are, or that we can’t do maths or really are fat or ugly as the kids say.
They can see themselves as unchanging and inherently good or bad at certain things. This remains true, even if in the heat of an emotional argument with the latest best friend, everything thing is ‘their fault and definitely not mine!’.
What happens to us during the burgeoning years of our emotional development is critical. It becomes our inner voice, and can be incredibly hard to shake.
Knowing all of this, it is obvious that we have to support and educate our girl as she lines herself up beside others. Before she draws the conclusion that any difficulty she faces which others may not, is because of a perceived ‘lack ‘on her part, rather than a developmental difference or the need for more and differing support around her.
Or that some stumbling blocks are actually the result of the actions of other people, particularly the adults in her life. That these things are not because of her, and most certainly aren’t her.
With the knowledge that her self-concept is steadily building, we feel torn.
On one hand, we want her to know that she can and does learn, just that she needs her own path, but we don’t want her to attribute any hardships to her “different brain”, or to ever think “why bother?” because of it.
On the other hand, if we don’t explain her brain development to her, she may naturally assume that she is inherently unable, lacking or worse still believe the “you are dumb” taunts.
We need to start talking to her soon. And I think we need to do more than just follow her cues by answering her questions as they arise.
We need to stay in line with her thinking as much as we can. So if a difficulty should present itself, she will hopefully recall “oh that’s right, Mum and Dad said that it helps me learn to be in a quiet room” or that “everyone’s bodies are different, some on the inside and some on the outside”. This is preferable to falling to bits without our presence in person or in voice, and getting into a state which is hard to unpack and sort out further down the track.
In a way, disclosing her own condition is much like any other aspect of parenting, in that we need to remain aware as to how our children may be feeling, what milestones are around the corner and that we generally need to keep a step or two ahead at all times.
Just with our kid, it is as though we are walking backwards facing her to keep an even sharper eye out, as she follows our lead. But she is also continually side stepping us all. Our collective gaits have different rhythms and we require a wider berth.
My conclusion is that we will start with talking about the ways in which she learns best, and to start a conversation about what she notices about other children’s learning. To talk about the ways we can and do help each other. And to start linking her knowledge about some bodies being made and born differently, and with the different ways that brains work. And we need to get explicit.
I think it safe to let her know that, just as she needs glasses to read better, she needs certain environments to learn in, and that following those made-up-on-the-spot rules of a playground game can be like landing a plane in heavy fog for her – because her brain has some different wiring.
And so we will turn to books to support us, bedtime books. Books we can read when it is just us and her. When she has wound down at the end of the day. When her tummy is full, and she is melting into us and our breaths are slow and steady.
First up: How My Brain Learns to Read.
She loves to be read to and learns a lot that way. By building on her passions and knowledge we hope to draw out her ideas and let her walk in front for a change.
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