Our toddler has Fetal Alcohol Spectrum Disorder (FASD). We decided we wouldn’t share this information with others, for fear he will be stigmatized for it. But I am discovering that we are paying a heavy price for this decision.
Because I don’t talk about it, my feelings stay trapped inside of me. And they only feed on themselves.
I had to take a full year off from posting to my blog. I simply couldn’t bring myself to address this awful disorder, and I couldn’t drag myself from the bottom of my parenting pit. Raising a child with Fetal Alcohol Spectrum Disorder (FASD) is difficult, and here’s why — for me, anyway:
Raising a kid with FASD brings out a lot of negative emotions in us, and those emotions fester.
One of my spiritual practices at the end of every day is to reflect on where joy occurred throughout the day and where negative feelings occurred. Almost every night, all of the joys come from my interactions with my daughter and my dog and my spouse. The negative emotions come from my interactions with my son. And this makes me feel like a huge asshole. I get stuck in a loop that starts with a frustrating Zak behavior (learned helplessness, whining, bath meltdown) which makes me get angry at him for being so frustrating which then makes me feel lousy about myself for getting angry at a child — at my child. And I feel like even more of an asshole.
I don’t need studies to tell me it is depressing, but if I did: studies tell me it is depressing:
“A sizable percentage of [FASD] parents [reported] clinically significant psychological distress or depression.”
I have a feeling few of us need to be told this from researchers; we already feel it. Nevertheless, I am happy to hear the underlying message: it’s not just me.
Importantly, the report went on to say:
“A frequently reported unmet, important family need in these new data was for reassurance about negative emotions.”
I am here to offer you reassurance.
I have never been able to speak openly about my feelings about Zak’s behavior without feeling judged. And it wasn’t just a feeling — others visibly looked uncomfortable or changed the topic or made a blanket statement of optimism (“But he’s so handsome!”) My mother has been especially judgmental of my relationship with my son. She holds him up as a misunderstood innocent and me as a cold and disapproving mother. She sees him twice a year for a short visit, but is not deterred by her small sample size of his behavior. This is the story she tells herself and everyone else.
But a few weeks ago I sought out a woman for a spiritual conversation, and for the first time in a long time, spoke honestly about my struggles with Zak. I was raw and open. There was no point pretending; pretending is not helpful. And much to my surprise, I was not judged for my feelings. When she asked if I was resentful, I answered, “Absolutely.” And when she nodded quietly in compassionate understanding, my resentment suddenly softened a little bit. It no longer felt as sharp. I am hoping that if I continue to speak with this woman, the resentment itself will shrink, or maybe even become a different feeling altogether.
As Zak’s mom, I have experienced some of the most negative feelings I’ve had in my life. I feel resentful, enraged, frustrated and plain old annoyed. I recently went to a conference on FASD and the speaker cheerfully called her FASD son a gift, “because before I knew him, I had no idea how much rage I could feel and what a gift to know that!” Um, no. That’s my definition of hell. It’s not a gift at all. Not to me, anyway.
So here’s the problem: negative emotions kept inside beget more negative emotions.
Anger becomes blame which becomes guilt which becomes loneliness which becomes hopelessness. In other words, we tend to cycle downward in negative feelings and cannot get out of the pit by ourselves. And it only gets worse when we keep it to ourselves. In my case, it led to a period of depression. This is what happens wen we keep our feelings locked away, when we keep their disability private.
Here’s the solution: a reassuring and compassionate listener
When we need to talk about our kids, we need a compassionate ally. We cannot be this for ourselves, but we can be this for each other. Amazingly, the woman I talk to does not even have kids, but she is letting me be me, without judgment. By not judging, she may actually help reshape our family dynamic. And I desperately need my family dynamic refreshed.
So do we tell others about our child’s condition? Will they get help? Or will they be labeled by teachers and ostracized by peers?
Tell me your thoughts on this question, and how sharing your child’s condition has helped or hindered your family’s progress. You can reach me at email@example.com or by commenting below. Thank you! We are all in this together, judgment free.