Mothering a child with FASD

By @FASD_Mum

It’s another “Mothering Sunday” here in England.  I am still unused to these earlier, colder March Mother’s Days, months before the day is celebrated in the USA’s May sunshine.  It’s less lilacs, pink roses and blooming azaleas, and more peeking crocuses and daring daffodils here.  My own mother died one May, amidst those blossoming blooming days, carried away on the breeze.

Maybe it’s a gift that this annual day devoted to thoughts of my own motherhood happens now for me in a different season.  I never had the chance to ask my mom about my own mothering.  There are about a million things I would love to ask her.  And yet, she spent just about every day of her life preparing me for what she considered the greatest role in life.

My mom never knew my husband.  She was not there for my scary ectopic miscarriage, when my mortality was suddenly there staring at me from an untried and still green doctor’s face.  She was not there for the birth of our first son, when I found myself strapped onto an operating table, not properly anesthetized, begging them to just cut anyway when I heard them all shouting the baby was in immediate distress. (Thankfully, they were able to put me under general anesthesia in time and the baby was more than okay, he was and is spectacular.)  She was not there when we picked ourselves up after we failed to conceive again, when we visited the IVF clinic and decided that route was not for us.  She was not there when we first saw a video of the young toddler in a Russian baby home, crawling commando style to get that toy he so desperately wanted, determined and reaching.

She wasn’t there at the airport with our family and friends as we brought the newest US citizen through the airport toward our future as a forever family.  She wasn’t there to see the distress of our eldest son when his new baby brother wasn’t wanting those cuddles.  She wasn’t there to see this overwhelmed toddler slam himself into walls and floors, a permanent bump on his forehead for years, to see his aversion to touching grass or his exhilaration at feeling a breeze. She wasn’t there appointment after appointment after appointment after appointment.  She was not there when finally at age 10 the news of his Fetal Alcohol Syndrome diagnosis smacked me down harder than I knew at the time, when “irreversible brain damage” became the new prism through which we began to understand our son’s condition.  She wasn’t there. It is a deep, deep ache.  My mother wasn’t there.

But she was.  She is.

My mom was salt of the earth.  She was one of nine kids of two Scottish immigrants. They struggled through the Great Depression, she told tales of stealing coal from railroad tracks, eating mustard sandwiches.  She couldn’t accept the scholarship she was awarded because she and her sisters shared clothes and she did not have one week’s worth of clothes to take to school.  She was headstrong, smart, and imperfect. She was a force of nature. She refused to allow the five of us to take ourselves too seriously.  She was relentless in her insistence that we stand tall (often said with a knuckle pressed between my two shoulder blades to get me to straighten up, prescient I guess of my current neck/spine issues).

So, how do these musings tie into a blog about a child with FASD?  I never knew it at the time, but she was preparing me all the while for this moment, this life.  Her quirky sayings play over and over and over and over in my head. They pop up sometimes at the strangest times, offering comfort and direction.

“Pick yourself up by your bootstraps.  Dust yourself off.”

Our son’s diagnosis hit me hard.  Suddenly all the sensory integration in the world was not going to fix this.  She would have recognized my depression sooner than I ever did.  She would have told me to get on with it.  She was insistent that everyone is capable of love, everyone can feel love and that is the most important thing of all.  She taught me to focus on the love, to look for the sparkle in his eye and to cherish it.  She trusted that eye to eye contact more than most.  I can’t tell you the number of times we have shown people who believed our son was autistic those pictures of our first meeting at that baby home, where our son is nose to nose with us, eyes gazing into our eyes and smiling. Even when the baby home offered us another child if we had any concerns about adopting this little boy, we trusted those moments looking into each other’s souls. We were never going to change course. This was meant to be.

“A mother is only as happy as her saddest child.”

She would have known this fear, this terror that hits at times, the deep aching that must be suppressed because if I start crying it will not stop.  The knowledge that through no fault of his own our son is going to walk through his life with a disability that few will understand.  He will face time and again the confusion and disappointment that comes from being misunderstood and pushed aside by those who don’t take the time to see him in his entirety.  She would know the full message of my hugs, which seek to swathe this lovely child in a surety stronger than the world’s pressures: your mother knows you, she sees you, she loves you for all that you are, as you are.  You are enough.  You are everything. You are perfect, because you are you.

“Here’s to you, as good as you are and here’s to me as bad as I am.  As good as you are and as bad as I am, I’m as good as you are as bad as I am.”

This was my mother’s favorite toast.  She hated hubris.  She ended up at tables and in forums where some Very Important People would be, and she rarely held back.  She knew she was imperfect.  She always said that with an education she would have been dangerous.  But she taught us to respect people not for their titles, fame or money.  She saw straight through that, to the core of a person.  I know she would have taught this toast to our son as well, staring into his eyes, teaching him to dare others to think they were any better than he is, no matter what.  “We all bleed,” she would say.  “Everyone uses the toilet.”  None of us are inherently any better or worse than another.  This is a message I seek to instill in our sons, both of them.  It is a message of self-confidence that our youngest will need to draw on time and time again as others may think they are better than him just because he is wired differently.

“You’ll get by in a crowd with someone pushing you.”

My mother refused to let me stare into mirrors.  She prided herself on getting dressed in five minutes and laughed that it took my dad longer than it took her to primp and prepare for a dinner out.  If I ever felt self-conscious, she would say, “Who the hell is going to be looking at you anyway?”  It sounds cruel, but it wasn’t.  The point was to realize that none of that matters.  We all have insecurities, and in a room full of others with their own insecurities, ours will not stand out.  We should walk confidently, no matter what our own imperfections.  We should walk tall no matter our differences.  I want our son to know he is as good as anyone else.  Anyone.

“It doesn’t matter if you are a garbage collector.  Just be the best garbage collector you can be.”

As kids we were encouraged by our parents to push ourselves, to stretch and to challenge ourselves outside of our comfort zones.  The goal was not fame or fortune, though let’s be honest, those were not to be dismissed if possible. But we were taught to find something we could do well, and do that.  Walk tall, be yourself, but work at it, hard.  Laziness was not tolerated in a house where by 7.00 am vacuums were out by and coffee was being served to foremen of the various building jobs.  Just be the best you can be.  We seek every day to help our son with FASD to find and celebrate his strengths, to build on those things he is naturally good at, his music, his gymnastics, his joy, his determination, his strength.

“Who don’t like shouldn’t look.”

Mom taught us not to care what others thought.  As long as we were walking tall, pulling ourselves up when we fell down, so long as we were true to ourselves and trying our hardest, it did not matter what others thought.  As we sat yesterday on a London underground train, this phrase came to me as I stared at the man staring at our son’s beloved Egyptian pharaoh headdress.  “Who don’t like, shouldn’t look.”  Buzz off, man.  “Go pound salt,” she would have said.  You do not know what you are seeing.  This child is braving a world of loud noises, confusion, changing scenery, not fully understanding where he is going but he is here, and doing pretty damn well.  If you don’t like his headdress, don’t look.  If his silliness bothers you, it’s not his problem.

“Look for the silver lining.”

I remember many a car ride when my mother would burst into song when she would see the silver lining over a storm cloud.  We were taught to look actively for them, to make a wish on them.  The silver linings are precious.

And this brings me to this morning, to yesterday, to the first day of the adoption, to the tomorrows I know are coming.

My mother would have loved our sons.  Both of them.  Equally.  For who they are and for who they will be.  She gave me the strength I need.  She taught me how to celebrate the potential we all have to be the best we can be.  She never defined success narrowly.  She knew that what counted was the effort to be the best we can be, each of us, in our own way.  She always understood we all get by with the help of others.  She would have loved to see how we pull together now to help each other achieve.  She would have loved to see our family, community, friends all join to help clear a path for our son to soar along at his own speed.

“Life is not fair.”

She prepared me for that day when my blind optimism was tested.  She did not believe that life owed us anything.  She was not one to let me wallow in self-pity.  She would tell us to just “put one foot in front of the other.”

My sons will never know my mother.  I will never know exactly what she would have said to our youngest.  How she might have instinctively tried to help him.  What she would have said to help me help him.

But I do know something.

I cannot sit here on this Mothering Sunday without honoring her, thanking her, reaching out to her across the years.  I used to think she had it all together.  I used to think there was a Plan, that my parents knew all.

I see now this improvisation we call parenting is much more trial and error than I realized it would be.  We are winging it almost every moment of every day.

I used to think Special Needs Parents were some sort of saints, some ‘other’ kind of parent.  I never knew that being a mother of a child with special needs just meant applying all those lessons we already know about parenting, about being good people, testing those maxims a little harder, stretching the truths a little further.

My mother loved the flowers of Mother’s Day season.  She immersed herself in the moment of their becoming.  Forever in my mind I will recognize her soul in that uplifting feeling that comes when you first see a spring blossom.

And here we are, in a different season, still celebrating the same things.  Our youngest son has always greeted every daffodil he sees with excitement, eagerness.  His spirit seems to leap when he sees them – he can spot a narcissi or daffodil from a hundred yards away and he runs toward it.  He has taught me that they have a lovely smell, but you have to really stick your nose into them, sometimes to the point of getting pollen on your nose.  His smiles and love of these cheery flowers is something that makes us all richer, happier, more fulfilled.

I think my mom would know exactly how to help this child to be the best that he can be.  I think she knew somehow that beyond all my wanna-bes, all my visions of changing the world, she knew that one day that being a mom would be my greatest role.

I asked her one time if she thought I would make a good mom.  I will forever wonder what flashed through her head in those long moments she stared hard at me.  I was expecting an immediate reply.  I was uncomfortable. She was gazing deep, looking at me from head to toe, inside and out.  That pause used to bother me, I played it over and over in my head. Insecure, wondering if she doubted me.  Now it comforts me, because I know this was not a reflexive answer, but a considered one from a woman I consider one of the greats, “Yes,” she said.  “Yes, you will.”

I hope so.  I am trying to be the best mother I can be.  I get by with all of those in this crazy, lovely, wonderful crowd who are pushing me, quite often when no one is watching.

And on days when this life seemed too much, too hard, too unfair, she would have said, “I wish you bluebirds.”

I never knew exactly what that one meant.  But it was somehow a kick in the ass to get out there and find the beauty, from a Frank Sinatra song about not being able to be with someone you love:

I wish you bluebirds in the spring, to give your heart a song to sing,
And then a kiss, but more than this, I wish you love.
And if you like lemonade to cool you in some lazy glade,
I wish you health, and more than wealth, I wish you love.