by @FASD_Mum

My dad had a series of strokes at the end of this life.  My mother had cancer that spread to her brain. Little did I know during those horrible days that those last lessons of their lives would help guide me as I raise one of their grandchildren, a child they never had the chance to meet.

After his strokes, my gentle, quiet, respectful father sometimes said horrible things he never normally would have said. Sometimes he was very extreme – shouting rudely in restaurants, his frustration bursting out uncontrollably.  Those bitter words cut, they were sharp and pointed, but they were not my dad.  We all knew to look the other way, to forgive, to let those words slide away from us while we focused on the love and inner strength of this confused and frustrated man who was fighting for his life.

My mom also had times toward the end of her life when cancer’s effects on her brain made her forgetful, made her confused, made her angry, made her shout things she did not truly mean to say.  We could see her deep frustration when she tried to find the words that failed her, when she tried to do things she had done her whole life, like crocheting, but could not make her body listen to her mind any longer.

And here I am, raising a child whose brain has been affected by damage due to his birth mother’s drinking while he was inside her womb.  We don’t know what neural pathways in his head have been damaged, destroyed or are missing, though we have an idea that the most likely regions to have been affected control signals between the left and right parts of his brain and those parts that facilitate self-control, executive functions, his ability to link cause and effect, his ability to comprehend space and time and numbers in all their complexity.

As with my parents, what we do know is that the physical processes inside his head have been affected through no fault of his own.  The brain is complicated, mysterious. At times the words that come out of my son’s mouth can be rude, offensive, challenging.  But they no more reflect his soul than the words my dad yelled from his wheelchair at a waitress were a reflection of his true inner thoughts, emotions or being.  My son’s oppositional actions, defiance, and aggression are symptoms of his brain damage.  My parents’ distressing brain-damage-induced personality changes surfaced after we knew who they truly were, after long lives.  We were able to interpret their intentions based upon the knowledge we had of the way they had walked through this world for years before the damage struck.  Kids with Fetal Alcohol Spectrum Disorders don’t come with that track record.  We just have to trust in them.  We have to believe in them.  We have to understand brain damage can cause difficult behaviors. We have to understand that they try so hard every day, and they simply don’t understand why they can’t get it right. I used to shout at my son, “Why are you doing this?” And he would shout back, “I don’t know Mummy!  I don’t know!”  I didn’t know then that he was telling me the truth.  But now I know better.

This aspect of FASD is the most challenging for parents. Parents who have too little support, too little information, too little sleep, and too many things to juggle and can’t always handle the behavior.  None of us are saints.  It is not easy when your child says hurtful things or lashes out.  We have not been trained in how to parent children who don’t fit into the standard “one-minute-timeout-for-each-year” model. The diagnosis is given (though that too can be a struggle) but there is not much follow up to help us better understand the lifelong impact this diagnosis will have on our child’s life.  Parents and ‘The System’ don’t always appreciate that it is not that kids with FASD don’t want to behave better, sometimes they just can’t. They get into trouble often – at home, in school, on the streets. They turn to drugs, are abused, or are easily led into aberrant behavior.  Too many end up in jail or are ostracized by their families and friends.

My heart weeps for those kids surrounded by authority figures who consider them to be ‘bad’ or ‘naughty’.  This is the tragedy of the hidden disability that FASD kids struggle with every day.  If they were missing a limb, or were blind, we would make allowances.  We cannot see the damage done by the burning alcohol that pulsed through their developing brain and other body systems too soon, sizzling its imprint on their lives long before they took one breath.  But it is there.  That damage demands we engage kids FASD with compassion.

When my son starts to spiral, I do what I did for my parents after strokes and cancer crossed their brains’  internal wires.  I turn the other cheek.  I turn the other cheek and ignore the words.  I trust.  Below those behaviors is the person I love, the person I know, a person who wants to be loved and cared for more than anything else in this world.  I ignore the gestures. I ignore the words even as they escalate further.  I seek to reassure.  I seek to calm the situation.  I give space for my son to wage that battle inside himself. I give him tools to help him deescalate. I let the moment pass, hopefully in safety.

I make sure that every night of every day before my son goes to sleep he knows, he is told again and again that I see him, I know him, and he is a good, loving person.  He is a wonderful, special person.  He is growing and will become a man who can better control his impulses. This disability does not define him.  He is more than FASD.  He is so much more than FASD.

I love him.  I do not hold a grudge.  I understand him.  I know he doesn’t mean those words. They are in the air, gone. They are blips. What is real is the warmth of his hug, the sparkle in his eye, the whisper of his sigh when it is all over. When he turns to me after a meltdown, with a confused look, I meet his gaze directly and I smile and say it’s okay.  He’s okay.  We’re okay.  We’ve got this.  Together, we’ll get by.  It’s a new moment.  And it’s time to focus on the rest of his most wonderful brain and his most wonderful heart.  It’s time to focus on his most wonderful talents and bask in the joy of his most wonderful self.

It is real, this disability, but it doesn’t define him. He is most wonderful.  I thank my parents for showing me how to love him – to really, simply just love him and to see him.


Click here for information on the brain and FASD.