Thursday, August 19, 2021

Autism Answer: Fetal Alcohol Spectrum Disorder, Little Brothers, and Moms



Me and my brother

His brown eyes seeking, his words profound, his question legitimate, the wish birthing it unreachable: "Why didn't my mom stop drinking? It was just nine months for her, a lifetime for me. My life."

My little brother was sitting across from me at my kitchen table, visiting me on one of his rough days. I could almost never fix the problems but I could sometimes help shift his focus. Which, quite often, served to guide him away from more problems.  

This is such a strong memory for me. Sitting there, impotent, as my youngest brother begged for an explanation while wanting, desperately, a different brain. His brain was working against him again and he was frustrated, exhausted, tired of working so hard to find his way. Always, for over thirty years and more to come, working harder than most to handle and understand common situations, and in large part because his mom drank alcohol while his little baby brain was growing in her womb.

Question: are you wondering about our mom? Wondering, maybe, how much drinking went on? Wondering why she was drinking while pregnant? Or wondering if he's my step-brother? Or if he's adopted? Question: Are you thinking things about the mom?

I've recently learned this about myself: I would be.

My brothers are my brothers. I have four of them and they are impressive. It rarely occurs to me that they're adopted. However, when the subject of their fetal alcohol spectrum disorder comes up it occurs to me. More accurately, it occurs to me to mention it.

It didn't used to, but my mom is an international brain change and behavior expert who tends to lead with her experience as a mom. A mom of eight now adult kids, four who had autism and various other co-morbid diagnosis. A mom who has helped all eight of her children become more than professionals or statistics allowed for. Mentioning adoption didn't occur to mom either until too often, when sharing what she learned about teaching people with Fetal Alcohol Spectrum Disorder (FASD) by sharing anecdotes from her life as a mom to my brothers, people would get sidetracked by questions of why she drank while pregnant, or judging her for it, or just thinking about it so much they missed the lesson in the story. So, now she mentions it. Now we mention  it.

NOTE: It is not a bad thing, mentioning the adoption. I'm not trying to say it's unfortunate that we mention adoption. Adoption is beautiful. It is an awesome aspect of who my mom is (the determination, the lengths she went to for my siblings, is so mom) and an intriguing aspect of who my siblings are (they have limited access to their biological story and a mom who went to great lengths to be their mom). Anyone who's grown up in a blended family where some siblings are adopted, or step-siblings, or half-siblings, etc., knows that growing up as a family is simply family. No shame, but rarely does it occur to mention it.
If I introduce you to  my brother, I introduce you to my brother. Not my adopted brother. 

However, I'm thinking about Fetal Alcohol Spectrum Disorder and biological moms. And my behavior, mentioning the adoption if I'm mentioning the FASD in my brothers, is telling. I don't want people to think my mom is at fault. I don't want them to think she was drinking while pregnant. It's not for sure that they would, but I don't want to risk it.

As I said, I recently learned that I would probably think about the mom.

I was invited to review the book Blazing New Homeschool Trails: Educating and Launching Teens with Developmental Disabilities by Natalie Veccione and Cindy LaJoy for Disabled World. (Click this link to read the review.) It was my pleasure! As I read the bio for each author I was surprised. They are homeschool moms to children with FASD. No mention of adoption. I got a flutter in my tummy, "Will they talk about it? Reach out to other moms who might be feeling too guilty about drinking during pregnancy to ask for guidance? Or to even recognize the FASD symptoms in their children because they don't want to see what may have been caused by them?

Now, reading the book I learned the children were adopted. That the question of "do they have FASD?" was a hard question to answer for those families because of adoption. Because their children's birth stories were incomplete and unknown.

But before I learned that, my mind had wandered and wondered. Why? Why had I wondered? Because there is stigma. 

"Fetal Alcohol Spectrum Disorder (FASD) is a brain injury that can occur when an unborn baby is exposed to alcohol. It's a lifelong disorder with effects that include physical, mental, behavioral and learning disabilities. These can vary from mild to severe."

Often people with FASD struggle just enough with learning deficits to feel as though, and be treated as if, they're being defiant. Or not trying hard enough. They're similarly capable to those around them, and indeed often exceed their peers in some areas, but there are areas of entirely real less common challenges that incite low self esteem. And the challenges become far more serious because we are unaware of the physiological problem causing them. 

Often people with FASD struggle enormously with learning deficits and feel completely incapable. They are treated as such. People give up rather than dig in and get to know the unique reasons and workings of the brain. 

Often people with FASD (and their families) fall somewhere in-between and struggle alone.

We do want to ask our children to try. We do want to raise the bar. It is the same when living with and teaching someone who has a mild or severe challenge. But understanding, or at least trying to understand, the very real difficulty they are living with that has to do with their brain, not an unwillingness or meanness, can be the difference between helping them grow vs pushing them to self-loathing, addiction, and bullying behavior.

But where FASD is concerned, there is the added hurdle of knowing it could have been avoided. Of knowing not drinking during pregnancy could have meant less difficulties.

My mom says, “You can’t walk gingerly. You have to step in and say I am gong to love you robustly, and we are going to get to the end of this!”

I think that includes being willing to accept that perhaps our children, even the ones that grew in our wombs, may have FASD. We have to make supportive room for moms to ask questions, to not be shamed if they seek ideas from others. To say, I drank while pregnant and now my child struggles with these symptoms, do you have any ideas for me?

At the same time, we continue to remind moms not to drink when they're pregnant.

"It's just nine months for her, but a lifetime for me. My life." My brother would have been best helped had she not drank during pregnancy. But he has also been undeniably helped by having a mom who taught with creativity, a fierce belief in him, and an understanding that though he could certainly learn, he learns differently.

Sitting at a kitchen table visiting my youngest brother, who has his own car, apartment, ideas, and sense of humor, is a delight. I want to help create a world that invites more brothers to the kitchen table. And moms.

We'll sip coffee.

Hugs, smiles, and love!