I have to preface this piece with some words of joy – a quote in fact that I have in their albums:
“The decision to have a child is momentous. It is to decide forever to have your heart go walking outside your body” (Elizabeth Stone)…
I note this, as in essence, this is how I always feel. My children give my huge joy – huge. My heart physically swells thinking of them & I never could have anticipated that feeling before having the boys. But with great joy, they also bring great vulnerability.
They have consumed my heart & as such I will do whatever I can, to give them all the opportunities I can & also – all the skills, tools & strengths I can help them develop; to take on their own journeys as independent, competent people ready to make their life all they wish it to be.
And when I say I love my kids, I mean not only that – but I also actually like my kids. I mean it.
Ethan is mature, wise, kind, gentle, sensitive & nurturing. He is contemplative & earnest yet full of confidence & courage… he is incredibly generous & it is the most delightful attribute to watch emerge. Ethan is beginning to show the most remarkable talents – ones I could never have anticipated & I have great faith in him. I am incredibly excited about his journey – I really think he may surprise us.
Mylo is our quirky kid – he is full of personality & it’s immediately obvious. People are drawn to Mylo in ways I’ve not encountered before. His light & laughter exude a compelling energy….. As he runs down the street in his underwear, a plastic drill tucked in one side, a sword in the other, mask on & his arm in the air shouting “I am Buuuuuzz Lightyear”, you know this kid has spunk & all sorts of adventures ahead.
Both boys are fantastic little people. They are loving toward us, each other & bring so much fun into our lives, I do not have the words to even go there in all honesty.
However, despite this & despite seeing many great qualities as they grow, that I like to think we played a role in helping to develop… I have weeks like this past one where I can feel nothing but exhaustion; nothing but emotional fragility & consider myself little other than a failure as a parent.
How do I take myself from such joyous moments to such punitive ones?
Well, moments I guess – they are but moments & that is why the joyous ones are equally as important to acknowledge as the challenging ones. What draws me to this more however is that despite seeing all the good & all the joy, I can still have weeks I feel as though am getting it all so wrong.
About 6 months ago, our youngest son, Mylo (approaching 3 now) was diagnosed with Sensory Processing Disorder (SPD). “SPD refers to the theory that children [and grown ups] have different neurological thresholds in regards to sensory input. A neurological threshold is the amount of information it takes to charge the neurons in the brain so that they can respond to said input. Depending on where these thresholds are at, ability to cope & function on a daily basis can be significantly impacted. And furthermore, these responses can change according to environment or stress – illness, fatigue, hunger & so son” (Karen Murphy OT, Kidzpoint, Sausalito, CA.)
When Mylo was around 1, a number of developmental delays which I had been persistent in following up since he was 6 weeks old, led us to eventually get an MRI which demonstrated evidence of flattening of the medulla – the likely result of a suspected inutero stroke which led to the umbrella diagnosis of cerebral palsy.
Since then, we’ve been very fortunate to receive a ton of support both in New Zealand & now in the States which have made this diagnosis almost irrelevant in terms of daily life. Mylo is virtually on par with his peers in every way possible.
Relevant to this diagnosis or not, of late, our biggest focus has been his SPD. Although a recent diagnosis, looking back evidence of SPD has been present in various forms all along his journey. For Mylo, like many children, SPD displays itself in different forms – from sensory sensitivity & sensation avoidance to low threshold & low registration. This is evidenced in a variety of ways – for example he finds socks painful on his feet; pants can also cause distress; water temperature can be an irritant; noise can be overwhelming; he is inseparable from his blanky & he self soothes constantly by sucking his fingers. Some of these are very normal toddler behaviours & some are more extreme.
Not every kid with a security blanket has SPD.
Essentially Mylo cannot self regulate under stress the way some other children do naturally, without even recognising it.
The reason I am sharing something I consider very personal is simply because I needed to share my struggles… In part I am aware how embarrassing it is to acknowledge these struggles as – fact is – Mylo is so mild SPD is barely noticeable most days & we’ve hit it so young, by comparison to many, I have little to complain about.
Despite this knowledge, I still find myself struggling & continually disappointed by my own lack of performance.
On a daily basis, we have learnt to work around some points of conflict – Mylo never has to wear socks for instance & instead I wash his shoes – often. Everyone is happier. I have learnt to use a very quiet voice when I can see things winding up; to engage in gross motor play during sensory seeking bouts; to provide a quiet space – for us a pop-up tent- where he can shelter when things are overwhelming.
Day-to-day this is all easy.
When Mylo gets sick however or is over & beyond the normal tiredness of a toddler, I suddenly find we are all pushed to our limits & I am once again berating my poor parenting skills.
During these episodes, which can last a day or a week, Ethan is often forced into compromising more than he should to keep the peace. He also bears the brunt of Mylo’s need to squeeze, lash out or gain input from a hug – Ethan is often his “go-to”. Ethan also does not get as much attention as he deserves, as when lost within himself, Mylo is all-consuming.
There are times when Mylo cannot get out of the state he has worked himself into as his body desperately tries to “realign” & watching him struggle in a tantrum or meltdown is heartbreaking & also incredibly challenging. Just when you think you may have solved that moment’s issue, another crops up & so the meltdown continues – for hours. Hours. There are moments here & there where he can stop & re-group – even now, ask for help. But these last only a few minutes – maybe 10 or 20 at absolute most if we’re lucky – & then we start again.
When this has been the case for two hours before we even leave the house for school, tears, anger & feelings of utter inadequacy are often rotating between both myself & the boys.
And this – for which we are extremely grateful, is a very mild case of SPD.
Coming out the other side of one of this week, I can see in hindsight how hard it actually was. How tired I was by the weekend, how even reading this & remembering the week brings tears. Not just because I feel like I failed to meet Mylo’s needs but because it was so much for Mylo. And equally important, it was so much for Ethan.
I cannot yet make things equal or “fair” for Ethan during these weeks & I cannot remain calm & in control for Mylo the entire time.
As my understanding grows & thus our tool box expands, I admit, these periods becomes less daunting. However I still do not feel any more competent that I am parenting well in these moments NOR any less sad & frustrated that Mylo must endure this & that I cannot fix it for him.
When good, he seems unharmed by the whole experience of a bad week. Yet he is only 3 (almost); his world is still so small, who knows what damage I have done that may crop up in the coming years.
Should I be saving now for the therapy bill?
I am aware this post is rather negative; it lacks the attempted humour of my other posts; there is not so much of a silver lining. I apologise for that in the sense that I wish not to put people off reading my posts.
However offering up raw honesty in regards to my self doubts on parenting; sharing with others our struggles – despite their minor scale – is my means of reaching out to others struggling too. Hoping I am not alone.
This blog is my simple wish to share our journey through my writing. But my journey without the realities, without the honesty – makes the term “sharing” seem fairly hollow.
I hope from this, that all others struggling with either SPD in whatever form it takes or simply struggling with toddlers & all their glorious quirks (!) will take heart that you are not alone. Share in the respite that we all have days we laugh & feel we’re getting it right.
And we all have days we don’t.