Blog_SnailedIt

By SB_FASD

Our son’s taxi was late. He was all ready for school. He had in his bag photo albums from when he was a baby and a clipping of a news story about our local FASD support group. I had work to do, I was feeling pressure. Our son hadn’t eaten breakfast again. We were waiting outside so the dog would not become further excited. It was raining. I was in my pjs. I wasn’t in my mum-of-the-year mindset. I wasn’t there. I wasn’t in the moment.

And then my son noticed three snails.

They were climbing a post by our door. Three different sizes. The biggest one (the mum, he said) was lagging behind.  We stood there, my son and I, for nearly 30 minutes discussing those snails, where they were going, what they were seeing, what they might be thinking. I hate snails. But on this morning, I loved them and was fascinated by them, totally engrossed by them – right there with my son. In his moment. I even learned something watching them come out of their shells when making what seemed like lateral moves around corners from up high.

Sometimes we don’t know where we are going or what it takes to get there. But you do what you have to do. You improvise even if you are not sure exactly where things are headed. You just keep moving.

The taxi came and our little one went off to school. I started thinking about mindfulness and the advice we often receive to simply (!) slow down. I was thinking about the many times our son shows us that due to his FASD, he is mindful of things I often don’t notice. I thanked him before he went to school for being so observant. I told him without him there I never would have noticed those snails today.

I have been busy. Good busy. But busy. The kind of busy that means you go to work early and miss seeing your kids off to school. The kind of busy that when you come home from work, your face is still in the computer when the kids are looking for a chat or the dog wants a cuddle or your husband’s in the kitchen cursing the stove yet again while trying to feed us all. The wake-up-in-the-middle-of-the-night-and-do-more kind of busy. And it was worth it. Probably if I had it to do over, I would do all of that again. I will do all of that again.

But I came across this quote in the midst of this week and it spoke to me about how we define our terms.

I lied and said I was busy.
I was busy;
but not in a way most people understand.

I was busy taking deeper breaths.
I was busy silencing irrational thoughts.
I was busy calming a racing heart.
I was busy telling myself I am okay. 

Sometimes, this is my busy –
and I will not apologize for it.”
                ― Brittin Oakman

 There are lots of ways to be ‘busy.’

There was another piece doing its rounds in social media this week, by Alethea Mshar “Dear Special Needs Mom Who Feels Invisible”:

I want you to know that I see you…I know you feel invisible, like nobody notices any of it. But I want you to know I notice you. I see you relentlessly pushing onward. I see you keep choosing to do everything in your power to give your child the best possible care at home, in school, at therapy and the doctor. What you’re doing matters. It’s worth it.

On those days when you wonder if you can do it another minute, I want you to know I see you. I want you to know you’re beautiful. I want you to know it’s worth it. I want you to know you aren’t alone. I want you to know love is what matters most, and you have that nailed.

And on those days when you have breakthroughs, those times when the hard work pays off and success is yours to cherish, I see you then too, and I am proud of you. Whichever day today is, you’re worthy, you’re good and I see you.

This week some of us brought the voices of many of us to Parliament and to the Royal Society of Medicine. We stood side by side with each other and with medical, educational and epidemiological experts to share the truths that we have learned in our combined experiences as people with FASD, birth parents, adoptive parents, foster carers. We are strong, we are warriors, we are standing firm. Hear Our Voices was the simple but powerful message we carried with us from the thousands in our networks.

There have been some unexpected moves, some lateral moves. Times when we have come out of our shells and out of our comfort zones. We are not entirely sure where we are going. We sometimes feel like we are too busy trying to simply keep breathing that we are not accomplishing what we hope to accomplish. Sometimes it is enough to be seen. But the goal in the end is to be heard and for the messages we are saying to be acted upon.

My son lives in the moment – or as Dr Cassie Jackson calls it, the ‘Here and Now.”  There is beauty in entering into his world – this is what I tried to say to the doctors and psychiatrists at the Royal Society of Medicine. While the medical community and the policy makers and the number crunchers all try to assess FASD from their undeniably important analytical perspectives, we have to take pride in the messiness of being parent advocates. And we honour and deeply respect those of us with FASD who are self-advocates. The most powerful moment of this week was when a teen with FASD spoke her truth to parliamentarians and when they spoke back directly to her, affirming the impact she had made.

We have a right to be at these tables even if we are a bit crumpled around the edges, less smooth than we’d like to be. As real as that life-worn Velveteen Rabbit we tell our kids about.

I’ll admit here among friends that I had to dig the dress trousers I wore that day from the bottom of a dirty laundry pile and my shoes were not shined as I walked into Parliament.  I am sure there is still some sort of liquid vegetable at the bottom of our refrigerator drawer and the freezer cannot close properly because it so desperately needs defrosting. This life is messy.

Being a parent advocate is not always pretty and it is not straightforward. It feels slow. Sometimes it can seem like an impossible juggling act when the demands at home are so intense and those moments away from my children feel like I am failing them.

But when my little one proudly tucked into his school bag so he could show his friends and teachers a positively framed news article titled “Calling All Superheroes” that highlighted “support for those with a brain condition” – I knew, I KNEW this journey is worthwhile.  We will get there, even if it feels at times like a snail’s pace. This next generation is strong and with our help they will be better equipped than those who have gone before them. They have FASD role models paving the way. We all are standing on the shoulders of giants. We are not fighting the same old battles. We are moving this into a whole new playing field.

And my son who sees more than I do reminded me this week that even a snail’s pace can be a fascinating journey.

I suspect that once we break out of our comfort zones further – bringing with us to static rooms our messy lives and our powerful truths – change can come faster and with more innovation than we can imagine now.

And as we who live it all all know, where ever we FASD families go the trails we leave sparkle and glitter. 🤣

For anyone who doubts that, I have proof. In this one snail- and slime-loving house – I have yet to scrape the remaining glitter slime off our dining room table…and the snails are out there again on this wet morning. Yes, this weekend’s task is to tidy up around here after a busy week of being both seen and heard…reality calls…

 

 

 

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