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!


Monday, August 9, 2021

Book Review: Blazing New Homeschool Trails: Educating and Launching Teens with Developmental Disabilities by Natalie Veccione and Cindy LaJoy

 This review was originally written for Disabled-World and can be found by following THIS LINK.

Blazing New Homeschool Trails book cover, surrounded by a wrench, roller skates, and a bowl of veggies. You know, homeschool supplies. :D

Weekdays: Bed times were tough. Mornings were tougher.

Weekends and holidays: those were the too-short sparks of absolute joy and comfort.

When my four sons were school aged I ached with worry and indecision about school. Each one of my sons, at different times and in their own ways, struggled to stay their vibrant brilliant selves while being shuffled through a system that has grown cumbersome and dangerous.

Eventually, my sons found their own ways out. General education diplomas mostly. My youngest graduated with his class and even went to University for a bit.

But I will always wonder what might have happened for them had I been brave, creative, and willing to homeschool them myself. Oh, I thought about it at the time. I thought a lot about it. But I always chickened out, falling on the excuse, “If I try and fail, then I've failed. If the system fails, that's on the system.” Of course, it's not about me it's about my children and this excuse does not hold water.

What, I wonder, would I have done had I come across the book Blazing New Homeschool Trails: Educating and Launching Teens with Developmental Disabilities by Natalie Veccione and Cindy Lajoy? What, I wonder, new trails might my sons and I have blazed had I discovered resources such as Cindy's Facebook group or Natalie's podcast?

I don't know what I would have done. But I do know it would have been a gift.

Regardless of whether or not you are a homeschool parent, a potential homeschool parent, or simply a parent who wants encouragement to blaze new trails, this book can be a friend.

Encouragement is the prevalent mood that barrels through Blazing New Homeschool Trails. Whether reading a segment written by Natalie or Cindy (both homeschool moms), there is a strong feeling of being believed in; being cheered on. And it is effective.

The authors don't deny the challenges. They share personal struggles and obstacles with us readers, put a mirror up to our own worries as they reveal theirs, and remind us that this will be work. But parenting is always work. Parenting neurodiverse teens in a world built with them as an afterthought, and too often considered a burden, is extreme work. And while we avoid the work that might do the most good we're doing the harder work of undoing harm.

I saw it with my brothers. My mom pulled all four of them out of school (they had various developmental disabilities, including FASD – Fetal Alcohol Spectrum Disorder) and they learned more skills and academics in one year of homeschool on the road with mom than they had the previous eight or nine years in a variety of schools and classes. They learned more and everyone was happier. I wonder, what would it have looked like had mom started sooner? How much less building up of broken beliefs in themselves? It doesn't help to regret, but it can help to share with someone who is still at the beginning and can choose to start sooner.

While reading the stories Natalie and Cindy share in their book I kept being reminded of mom. The people and stories are different, of course, but there are so many parallels. Adopting children with uncertain diagnosis and experiences, seeking help from educators who are often ill-equipped even if well meaning, moving neighbourhoods in order to leave persecution or overwhelming judgment, seeing your children as capable and worth the time while being frustrated with people meant to help who are unable to do so, inviting laughter and honesty into the home at every turn, and taking an approach to teaching that sets everyone up for a healthy future, not only good grades and other short-term accolades. I am certain you will recognize parallels from your life, too.

Blazing New Homeschool Trails offers a strong foundation while being a short and simple read. This book can be read quickly but does not leave you with less because of it. The tools to blaze your own trails are there, infused with encouragement and specific tips. Stories of what the authors did in their homeschooling, how it effected the family, what changes were made, and how things evolved over time.

More than that, they take the time to join you in your homeschool room. They include specific practical tips (the value of visual supports, for example) and also remind you to take advantage of the freedom homeschooling allows. Sometimes it's a good idea to simply change the subject, for example, rather than try to force a lesson. Pushing too hard at the wrong time only builds more barriers and leads to frustration and low self-esteem, for teachers and students. This flexibility is not natural in a typical classroom.

Blazing New Homeschool Trails can be helpful regardless of the type of learners your kids are. But it is particularly valuable if you're teaching and learning with people who have developmental disabilities of any sort. Both Natalie and Cindy look at their children from a place of love and belief in them. They don't ever use language that forgets. These are friends and role models you want as you blaze your own trails. Because that's the thing. You will have to blaze your own trails, with others as support but not exactly as leaders. This is something that comes through well in the book. They can't tell you how to do it. They can show you how they did it, what the guiding principals are to build your one-of-a-kind curriculum on, and why for many families it is more than worth it.

My sister is a homeschool mom. Her daughters were only beginning to struggle in school when she had a moment echoed in Cindy's story. Both my sister and Cindy had a strong gut feeling they would lose the spirit of one of their children if they didn't get them out of the school settings they were in. And both of them had the courage to follow that feeling.

Did I have a similar feeling when my boys were little? I think so. But I didn't follow that feeling.

Blazing New Homeshool Trails is a great introduction to what it can be to follow that feeling. Not all learners need homeschooling, but if you have a gut feeling yours might blossom with a different kind of learning environment, one you can build with them in mind, I recommend taking the time to read this book. Not only because helping your children blossom is lovely but because not doing so can hurt and harm them.

If you are already a homeschooling parent – especially if your students learn differently! - this book is a good tool to have on hand.

For parents who choose not to homeschool, this book is still a good idea. It can help you build a healthy learning environment for your children during after-school hours, weekends, and holidays. It can encourage you when you're feeling at a loss and remind you to look for opportunities a little differently.

For parents who have children, especially teens, that are developmentally disabled, this book is more than a good idea. It might be a necessary one.

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Blazing New Homeschool Trails on Amazon:

by Natalie Veccione and Cindy LaJoy

pages: 97