A Lonely Road Without a Map and A Battle Anew

Raising awareness about a little known diagnosis that impacts us all

Child angel in prayer statue
Oakwood Cemetery, Raleigh, North Carolina (Photo credit: author)

Driving around.

That’s how I coped when my kids were little and I could’t get them to nap, or I simply couldn’t deal and frankly felt I might lose my mind. I’d strap them in their carseats and drive them around. Sometimes I’d get on the highway with the hope that the constant speed and hum would lull them to sleep. Other times I’d drive slowly through favorite neighborhoods: Oakwood, Boylan Heights, Cameron Park.

If they both miraculously fell asleep or were at least content, I might also drive through Oakwood Cemetery, which was close to home. For the decade prior to motherhood, it had been a favorite place to escape with its rolling hills, towering trees, and babbling brooks, dispersed among silent stories marked by stone. Here I’d felt a sense of timelessness and inner quiet, and so when I could, I’d cruise through this familiar open space with my window down, hoping to capture a sliver of peace before releasing my wildlings back home.

On Saturday evenings when my husband was working, I’d often take the kids through the “Old MacDonald’s” drive-thru. While I’d boycotted McDonald’s for years after reading Fast Food Nation pre-parenthood, it had become one of my failsafes as a sleep-deprived mom, who now prioritized personal convenience as a matter of survival. We’d get our perfectly packaged Happy Meals, and I’d make sure each child had the preferred accompanying toy. Then I’d park and get them set up to eat, followed by getting my own food ready, and after taking a couple of quick bites we’d be off again.

We’d drive by the shimmer wall of the convention center and then down Fayetteville Street, and for a moment I’d feel like maybe I hadn’t totally lost my farm-girl-turned-urbanite self betwixt the endless sessions of feeding, diapering, entertaining, soothing and more soothing, repeat.

If it was December, I’d feel a bit more purposeful: “Let’s go look at the lights while we listen to Christmas music!” I realized we’d done this one too many times when they were no longer enticed by the prospect of my holiday joy ride and instead preferred to stay home and “watch a mooo-vie, Mama!”

Today I took my time driving home from the Farmer’s Market — an outing I’d hoped would be a fun reprieve from our 2020 pandemic depression. As the kids contentedly watched a DVD in the back (something I only allowed on long trips when they were little, but use increasingly to stave off their tween bickering and my blowups in response), I remembered exactly how I felt when I was most desperate to drive:

“I must not be a very good mother. I must be weak, undisciplined, lazy even. Perhaps I’m not cut out for motherhood at all. Why else would life feel so difficult with my two tiny tots?”

Admittedly, these feelings still crop up from time to time.

My children, one adopted (my boy) and one not (my girl), were born less than a year apart, and both were “high-need” infants and “spirited” toddlers according to the gazillion books I read and endless experts I followed. I don’t really remember not struggling with them, which was extra painful after years of wanting nothing more than to be a mom and having thought I was prepared, only to confront being woefully unprepared.

I could generally make myself feel better with self-talk like, “They are hard, and this time is hard, and it will get easier.” I tried to remember this whenever I got down on myself because I knew their well-being was very much tied to mine. I needed to do better in all the ways, and I needed to feel better so I could be better. I kept trying.

I had tried to do all the “attachment parenting” things from day one that are supposed to help little ones feel safe and secure, and I had brought my husband along into this mindset and parenting approach, which was hands-and-heart-on 24/7. Then I’d tried all the “positive parenting” things that are supposed to help children feel seen and heard, accepted, and loved while figuring out how to be and achieve in this world. Again, my partner thankfully came along on this learning journey with me.

Like every parent, we wanted the absolute best for our children. We loved them unconditionally, and we wanted them to feel our love and never question it. We also wanted what I assume every parent wants as their children grow: increasing levels of compliance, a.k.a. “good” behavior, without resorting to harsher parenting practices rooted in shame and blame. We wanted the ease and harmony we imagined we would have if we did things the “right” way and stopped screwing up for god’s sake!

We kept being told consistency is key. But consistency was elusive for us, and so were successful outcomes. We just kept missing the mark, and when other people’s kids were outgrowing tantrums, one of ours most definitely was not. He began losing friends, and eventually so did we.

We felt ashamed, confused, anxious, angry, and utterly stressed out, and too often both kids suffered as a result. One had our nearly constant attention and the ensuing over-correction, while the other apparently learned in time to stay out of the way. None of us got what we needed, and I felt responsible for every bit of failure we experienced.

Those reading this may be thinking I was too hard on myself, and perhaps I was. I had known parenting would be both the biggest gift and challenge of my life, and I certainly didn’t expect to be perfect. I had mama friends who struggled in some similar ways, and I would hear their frustration, which helped me not feel quite so alone and inadequate.

But everything seemed harder in my world, more intense by exponentially greater degrees. Why was that?

Fast-forward about a decade, and my son, now 12 1/2, has been diagnosed with a Fetal Alcohol Spectrum Disorder (FASD). Despite seeking expert opinions and support from the time he was 3 years old, it wasn’t until meeting a new therapist last year that anyone had ever even suggested FASD as a possibility.

While he doesn’t have the characteristic facial features (present in only a minority of cases), he has all the other hallmarks to varying degrees: emotional and nervous system dysregulation, dysmaturity, impulsivity, inattention, hyperactivity, learning challenges, sleep problems, sensory issues, anxiety.

While getting this diagnosis was and still is difficult to bear, at least I understand now why life has been so hard, why it hasn’t gotten easier, and why there’s a new twist around every bend that throws us into a tailspin.

Now I know why he would melt down every time we needed to leave to go somewhere, even if it was somewhere he liked going, and again when it was time to return from that place. Transitions are enormously difficult.

Now I know why he couldn’t fall asleep from infancy until age 5 when a neurologist finally recommended melatonin. We literally spent hours a night every night for the first 5 years of his life trying to get him to sleep (usually by bouncing with him on a yoga ball).

Now I know why video games are so much more difficult for him to stop playing than the average child. This is also true for TV and explains why he melted down every single time TV time was over when he was little, regardless of reminders and timers and routines.

Now I know why moderation in general is so hard for him and why despite the likelihood of loved ones being upset with him for taking more than his fair share, he does it anyway. I also know why sometimes he only eats certain foods and melts down when those foods aren’t available.

Now I know why he got in trouble at school more frequently with each passing year, instead of becoming better behaved as he grew like the majority of his peers — and also why he couldn’t stick with activities he thought he wanted to do. His anxiety has always been debilitating, and so has his sensitivity. Almost as soon as an instructor became cross with him, he’d refuse to go back.

Now I know why as a baby he met milestones on time and even early in some cases (walking, talking), yet we began wondering as an older child if he was autistic because of emotional-social delays and others of which we couldn’t make sense, like an inability to generalize.

Now I know why his mood can shift dramatically throughout the day and why he has puzzled all kinds of professionals as well as some family members, who haven’t seen all sides of him and tend to minimize our struggles.

Now I know why he needs to jump on the trampoline multiple times a day every day the way some kids on the Autism Spectrum need a similar movement outlet as part of a sensory diet.

Now I understand why he doesn’t respond to rewards and consequences the same way our neurotypical child does.

Now I understand why medication hasn’t helped very much.

Now I understand so many things I didn’t understand prior to this diagnosis. How I wish I’d understood sooner so that I could have been a more compassionate parent to both of my children and also more compassionate toward myself and my husband. We needed to be Trying Differently Rather Than Harder, as the book of this title, by FASD expert Diane Malbin, explains.

If only we’d known. If only his teachers and others who worked with him had known. If only friends and family members had known. Perhaps we’d have been better to each other and to him. Perhaps he wouldn’t have been further harmed by unfair expectations that, as bright as he is, he couldn’t meet.

We desperately need a nationwide educational campaign about alcohol use during pregnancy similar to M.A.D.D. We need it now, especially during this pandemic when alcohol consumption has risen sharply and so many are hurting. We also need funding for research and treatment for FASD.

Life with FASD is hard. It’s hard for the person on the spectrum, and it’s hard for the entire family. Many of us suffer in silence because of the stigma, and we suffer in isolation due to fear about what our children might do or say in public and how others will perceive them. We are heavy with fatigue and grief, burned out with fear and anxiety.

We need to talk about the brain and nervous system damage that occurs when women drink while pregnant — often before knowing they are pregnant and sometimes because they suffer from alcohol dependency and don’t seek help due to shame, lack of awareness, and poor access to healthcare.

We need to talk about alcohol beyond the very important issues of underage drinking, drunk driving, and alcoholism.

We need to talk about drinking beyond beyond mom’s wine night, dad’s favorite bourbon, and the new neighborhood brewery and bottle shop.

We need to talk about society’s love affair with a neurotoxin that hurts babies, families and communities, and costs billions and untold heartache. And we need to talk about the industry itself that looks the other way.

My child, like millions of others with a Fetal Alcohol Spectrum Disorder, deserves better than to suffer in the shadows with an invisible disorder that impacts every aspect of his life and which society largely denies — leaving him with vastly insufficient support and expertise from medical professionals, researchers, educators, policy makers, funders and beyond.

As his mom, I deserve better, too.

These days I drive to horseback riding and the drum lessons that help soothe my son and boost his confidence where school and community have failed him. I drive to doctors’ offices, therapy sessions, and the pharmacy. I still drive to McDonald’s, though Moe’s is his favorite. We drive hours to visit cousins, despite the risk of Covid, and are relieved to see him happier than he’s been in ages, if only for a few days.

I miss the innocent drives with my littles gazing at Christmas lights with stars in their eyes. I miss the dreams I had, the infinite possibilities. But I’m grateful for the knowledge and understanding I’ve gained from those who care about our kids, and I’m not giving up. I am a mother — a good-enough mother — to two brilliant, beautiful children. I’ll never give up.

Mom, partner to my childhood sweetheart, yoga teacher out of work due to Covid-19, and occasional writer. www.thisgroundthisbreath.com

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