Our son recently has taken to watching videos of roller coaster rides on YouTube. He is fixated by the ones that go highest, fastest. The ones that plunge and twist and turn and go upside down and backwards. He asks us to watch them with him. It makes me smile. I wonder if he relates to it in some instinctive way.
One of the hardest challenges of FASD is the never-ending ups and downs of it. There is joy, great joy, in our child’s being: a swinging-swirling-gleeful-flying-down-paths-at-full-speed kind of joy. And there are downs: screaming-shouting-throwing-things-breaking-things-lashing-out kind of downs. The line between those two extremes is immeasurable. Sometimes we are on solid ground for what seems like long enough to let down our guard. And suddenly the floor falls out from beneath us, and we are upended again. We still can’t predict fully when a moment at home may suddenly plummet into a Moment: a very low Moment-that-can-last-an-hour-and-make-your-stomach-hurt-if-you-are-not-careful kind of moment.
Don’t get me wrong. There is peace: a curled-up-in-bed-with-a-fuzzy-blanket, yummy-snack-and-good-music kind of peace. There is discovery. There is togetherness. There is celebration. There is sweetness. There is laughter. Bubbles. Hugs. And roll-out-the-dough-together moments of satisfaction. Glimpses of a successful future. Deep pride when suddenly you see that all by himself he figured out (long after you gave up) how to fit those circuits together to make that light light, to make that twirly thing fly. There are times when he decides it’s time for a tidy room and he makes grown up decisions about which toys are too baby-ish and which things need to be re-organized, doing better than you did during your last attempted clear out. There is generosity, when you see him passing down favorite books to a younger friend. Innocence. That tenuous sweet fleeting-fast innocence you just want to protect forever in this big scary world.
There is a deep, deep bond. Every morning being greeted by his smile. He asks for a cuddle. A back scratch Every single morning is a whole, optimistic new day for him, even if I am dragging because I was up at 3:00 am again, zoned out, staring myopically at the television, but worrying about him, worrying about us, worrying about his brother, worrying about work, worrying about how the heck I am going to find the energy to start juggling it all again tomorrow. Every day his reset button is pressed. I owe it to him to reset too. Trying not to carry yesterday’s grudges, resentments, problems into this bright new clean today.
Our son struggles with self doubt. He internalizes it all at school. He has come home with big bruises on his arms where he sucked his skin so hard while trying to sit still. His sweaters and ties have had holes in them from nervous chewing. This year, he was told by an adult at school that if he didn’t stop biting pens she would buy him a dummy (a “pacifier”). This sent him into a highly disturbed state for more than a week. All the new medical grade chewy pencil toppers in the world will not erase those words from his head. There have been detentions for the wrong colored socks, missed homework. Panic over how he can possibly track all of this with his type of brain damage, when even I with my advanced degree couldn’t find that elusive homework assignment on the incredibly complicated online system. I want to sit detention with him. For him. But I can’t. So I get more frustrated and pressure him more to Just Sit Still and Do This Homework This Time. And he spirals out, and we all dread Monday, knowing more detentions are coming. He loves school. He hates school. Up and down. We regroup and get some of the homework done before bed. Will try again before school. Down and up.
The FASD roller coaster is mentally exhausting. Sometimes after a Moment-that-can-last-an hour my husband and I are so at wits’ end that we either yell at each other, letting off steam, or we go silent, trying to avoid anything that might cause another Moment-that-can-last-an-hour. We encourage our older son to keep his headphones on and stay out of the hot zone for a while more.
And you know what? I think, I fear that we are doing better than most. Many families do not find enough ups to negate the downs. We are careful to focus on the fact that the vast bulk of the day is ok, good, sometimes great. We don’t let the lows define our son. We try to keep the big picture.
But for too many the information is hard to find, the support is sorely lacking, they are alone and struggling and families are hurting. The health situation and brain damage of kids with FASD can be so complex it is extremely hard for a parent, a teacher, a local GP to take time from busy lives to understand. And as hard as it is for the adults to figure out, it is incomprehensible to the kids. Our children are the victims. That is something we can never, should never forget.
Our son cannot yet figure out why he feels and acts the way he does. How brave he is every day. Hanging on. Careening forward. Living on a roller coaster. He can’t control it, he can’t predict the ups and downs. Forces push him and pull him and send him spiraling. He laughs. He screams. And damn, I cannot stop it, or take the ride for him. All I can do is love him, whether he’s up or down at that moment, the one sure thing I can do is love. A love that is forever: an I-love-you-for-who-you-are-and-all-that-you-will-be-wherever-you-are-now-on-that-rollercoaster kind of love.