Vulnerability. This is the word swimming around my head this week. Everywhere I turn, it feels like FASD is shredding our family’s pride and defences, leaving each of us, especially our son, vulnerable.
Vulnerable is not a word that I generally apply to myself. It’s a word that makes me cringe, a word my gut wants to rail against. It’s a scary word. A word that can knock you down at the knees and leave you helpless. It is raw. I want to cover it up, rather than draw more attention. Hurry other people past what we don’t want them to see.
But FASD won’t give us that option. In a world where this disability is not fully recognized, in a world where doctors, teachers, midwives, policy makers, media, other parents, kids – no one seems to know enough about it, we find ourselves again and again having to be very direct and open. We have to provide details about our son’s brain damage and development. We have to talk about exactly what things he can’t grasp because alcohol burned neural bridges while he was still inside the womb. We have to rally ourselves for yet another meeting with yet another amazing professional who wants to help but whose education never included information about our son’s condition – the condition of a relatively silent but present and underserved segment of this society.
My sister-in-law has written on this blog about her journey in coming to a better understanding of how she could help us. But what she doesn’t say directly is that for our need for help to be heard at a deeper and more fundamental level, I literally had to break down into tears (not easy for the child of a Scottish American mum who taught me to cry in the shower so people wouldn’t know I’d been crying.) And yet, my own tears weren’t what was pivotal. I had to go further and admit that my husband regularly does the same. That’s what led to action. My husband’s tears. Vulnerability. It makes me cringe. (Him too.)
I have written about how confused our son was this week by sex education classes. What I haven’t said explicitly is how scared I am to think ‘big kids’ (as he says) and other ‘friends’ are telling him now to do things to/with other children. How chilling it is to hear him say that defeatist phrase little English kids mutter with a shrug of the shoulder, giving in, “I don’t mind.” I wrote about how he stole some candy when he went along to a shop with other kids rather than go to an afterschool club. What I did not write was how I had to fight back every parental red flashing alarm bell when I saw those big packets of candy in his pocket. How my own brain screamed when today at school, and for the second time this week, our 4-foot-tall-11-year-old-son-who-wears-size-1.5 shoes was being warned about the police. (For crying out loud, he still likes to sit in the baby swings at the playground. I wanted to scream.)
I didn’t say how absolutely heart-wrenchingly petrifying it is to KNOW this world can chew him up and spit him out before he will even understand what any of it is is about.
He is the one I personally have a duty of care to protect. And I am scared I might not, we might not, be able to do that.
FASD makes us be frank and in doing so to open up more than I would otherwise. I don’t want to have to talk to educators about personal things, about our family’s struggles, our son’s difficulties. I don’t want to have to yet again explain to friends, family about these conversations, and then deal with getting past other people’s defences while I am cringing myself.
But, you know what. I must. We must. And we also must give our son the words to eventually do this himself. Any family advocating for a child with FASD has to do this. We are not unique or remarkable. It’s just what you do for the kids you love, especially the ones at the fringe, on the outside, who don’t quite fit in. The ones who try hardest, who struggle with things the rest of us take for granted.
If I have to lay my own pride bare, and suck it up and scream it to the world, risk some disproving looks, if that is what it takes to help people understand that my child is deserving of a chance, deserving of respect and empathy, deserving of the time it takes to understand him, then yes, I can do this. I can be explicit about the times we are knocked to our knees around here by the storms and the chaos that comes when a person’s brain teeters on the brink of the fight and flight instinct, when a misjudged moment can trigger a meltdown that can leave us stunned, numb, depressed, frustrated, (angry), hurt, desperate, freaked, uncertain. I can write about the pain as a parent of not knowing how to help my child, the confusion of wondering why I am the one who has to research and educate about this condition that has been known to the medical community for decades, why I don’t have professionals telling me “It’s ok, here are the recommendations we have for you.” “Here’s how you handle that.” I can write about the challenges of balancing other family and work responsibilities with the daily uncertainties of walking through this minefield.
Most of all, if it helps, I will slowly and carefully set out there for all to see, the deep and enduring love I have for our son. I will say again and again and again how much I cherish this boy and how much I appreciate the depth and vivacity he has brought into my own life, into our family’s lives. Words I should only have to say to him, I will say out loud for all to hear.
I was ready to die during childbirth for the life of our natural born child. True story. Strapped to an operating table without enough anesthetic, I was braced and ready for them to cut me anyway when I heard them say, “The baby is in distress.” You can think whatever you want about adoption, but I am here to tell you that my maternal yearning for our adopted son to survive and thrive is as strong as it was (and still is) for the child I carried.
This week the signal has been coming to us repeatedly: “The baby is in distress.” And once again that instinctive will to ensure my child survives and thrives overcomes my personal fear and repulsion of vulnerability. So, here I am. Bring it on.
And in saying all this, I am not for a second implying that any of this is about me, or my husband. Our son is the one with Fetal Alcohol Syndrome, who sees the world through a different prism. I am trying to explain how we parents are laid bare in our efforts to help him because society, “The System,” the powers-that-be refuse to step up with their funds and their institutional might to make this journey less difficult for him. By treating FASD as a hidden, lesser disability (despite its prevalence), decision-makers are leaving the FASD community vulnerable.