Parents of kids with FASD more stressed than parents of kids with autism

At least that’s what the researchers are saying. A team from Canada interviewed dozens of parents in a study on the matter, choosing parents of autistic kids as a baseline because of their status as the most stressed parents of all. Until now.

The researchers concluded that raising a kid with FASD is substantially more stressful than raising “typical” kids, and “significantly” more stressful than raising a kid with autism.

I am aware that this not a competition. This is the epitome of the contest no one wants to win. But as a mom of an FASD boy it resonates. It resonates deeply. I finally feel validated, and not crazy.

Ok, maybe just validated.

The researchers list many factors, and these ones stand out:

Like autism, FASD is an invisible disability.

Because he does not have the full facial features of FAS (around 30% do), my son Zak appears normal, even strikingly handsome. His good looks allow many well-intentioned people, especially family, to tell us, “He is fine! Just irritable/clingy/picky/set in his ways/sensitive/cranky/a bit odd, but so what!”

I suppose they mean well, but this response has the immediate effect of negating our struggle, as if our worry and confusion is unfounded. As his parents, we know better than anyone how hard it has been to adapt to such a non-typical child, and when loved ones assure us he is typical (based on the two hours a month they spend with him), it’s as if they are plugging their ears. And I can certainly tell you that on this score, the researchers are right: it stresses those relationships, making life more stressful overall.

Unlike autism (in most circles), FASD is stigmatized.

I don’t envy my cousin and her autistic boys, but when someone looks disapprovingly at her kids, she politely tells them they have autism (which often sounds more like, “Back off, lady. They *expletive* have autism!” And lady, duly chastened, backs off.)

Autism once was stigmatized (remember when it was believed to be the fault of non-nurturing mothers??) but awareness campaigns and research drove it smack into the middle of the public square. FASD isn’t there yet.

What this means for me as a mom is that I don’t feel protective when I name Zak’s condition, I feel guilty.

I feel like I’ve just outed him as alcohol-exposed, making him vulnerable to bullying kids, uninformed teachers, and nervous parents who don’t want him around their kids. I’ve just handed people a lens through which they see his flaws, not his strengths. I feel like I’ve just made Zak’s life harder. It keeps me up at night.

FASD is difficult to diagnose.

Parents of FASD kids are frustrated and confused. They are wondering why things with their kid are so unusual, and go running to the internet looking for answers. Why can’t he suck from a bottle? Why is he so slow to walk? Why does he cry so much? Why is his cry so screeching and arhythmic, so awful on the ears? Why doesn’t he make eye contact? Why is he always so irritable? Why does he get so frustrated by his toys, and start screaming at them when they’re supposed to be fun? Why can’t we bond with him? Why is he terrified of the sound of the neighbor’s lawn mower?

Parenting is hard enough without removing a significant amount of what makes it meaningful and fun (like cuddling and bonding) and adding all sorts of confusing, mysterious behaviors (like having a meltdown because kids are sliding down slides at the park).

FASD is a “spectrum disorder” because alcohol exposure manifests in kids differently, all depending on when in the pregnancy it occurred, whether the drinking was binge or chronic, and the mother’s ability to metabolize alcohol. Like autism, no two FASD kids are identical, which makes it hard to identify. 

Answers and diagnoses help us make sense of things, and in their absence, we flail about blindly, sometimes frantically, wondering if it’s our fault, blaming ourselves and our kid, worrying incessantly.

So, if you are a parent of an FASD child, be gentle on yourself. Be compassionate. Go out for the night, get a facial, read a good book that has nothing to do with parenting. And if you have an FASD child in your family, be extra nice to their parents. No judgments; just compassion. Their stress reaches clinical levels. They need your support and your kindness.

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3 Comments Add yours

  1. Susan Low says:

    Thank you for your insightful article. We have parented five children who live with FASD and I understand your struggles and frustration. Although we take great joy in our children it has been very challenging and those challenges have followed us into our sons adulthood. I believe our challenge as a society is to make the world a kinder, gentler place for all people with disabilities.

    Like

    1. ancientmamas says:

      Hi Susan, FIVE! I may have some questions for you, actually. You’ve no doubt seen it all. I’m really interested in how you made it work and what challenges followed your boys. Apparently, part of what makes FASD so stressful for parents is the lack of hope in their kids’ futures. You may be able to give real voice to that.

      Like

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