We love a child with #FASD

By @FASD_Mum

Your child has snapped.  Suddenly, you are scanning the room to see what is breakable, what is heavy, what is sharp.  You are assessing where your other son is, where the dog is, where the windows are in relation to the likely path of that whatever-it-is-this-time that is in his hand.  You are swamped with feelings, frantic, fighting down your own instinct to yell, to over power.  You have read enough to know: You. Must. Be. Calm. Really. Calm. Now. But those books don’t tell you how to stem your own flood of emotions, the fear, the distress, the frustration, the why-are-you-doing-this-to-me-who-loves-you-most self-pity that does come (of course it comes).  He’s a banshee, screaming in your face all the words you have spent years avoiding, diverting, discussing, banning.  And he’s good at aiming them right at your weakness.  You just want it to end, but you don’t really know how.  You know you need to back away.  You know you need to stop adding more noise, more chaos.  You know you need to be reassuring.  You know you need your love to wash over him.  But right at this moment he is way too close to the sweet ceramic plate he made for you and you yourself are not yet calm in this storm.  You shout (yes, you know you should not).  You place yourself between those kicking feet and the dog.  You want someone to beam into the room and slow it all down.  Images flash through your head of a hundred things you did wrong as a parent this morning that led to this moment.  You yell at your husband, irrationally angry at him because he doesn’t know what to do either and because you can.  He will understand. You hope. In a flash you hope that bond is not getting too frayed in all this tugging and pulling and shredding of normalcy. But you can’t stop this.  It’s all happening anyway, despite the books, despite the hours, days, weeks of research, despite the strategies and supposed-to-s. And of course the added noise now of your own loss of control only ratchets things up.

These moments are fast, furious, and unpredictable.  They are bewildering, overwhelming, and the worst of the problems we have yet encountered with our son’s Fetal Alcohol Syndrome.  We can handle the rest of it, but this leaves us adrift. We spend our days analyzing the lead up to these moments, trying to avoid them, walking with the knowledge that one may be waiting around the next corner.  This moment now may be calm but we can never fully predict the next outburst.  Well, we can predict it, but not always avoid it.  We are thankful that so far these mostly only happen at home.  He is able to hold himself together in other situations.  We are proud of him for that.  It must take enormous effort. We are petrified what might happen some day in the future at the wrong place, wrong time.

We believe his side effects of stimulant medication are making this worse, much worse.  We try a couple of weeks off the medication, and he is ‘more crazy, less angry’ as our elder son describes it.  But he is like an engine revving too fast.  He cannot focus in that un-medicated state, at least not without us having more tools in our parental toolbox than we have at the moment.  So we try a new short-acting medication only for school with great success…at school, but with continued and perhaps increasing disintegration at home.

And then it’s half-term break and who the heck knows what to do now.  We don’t.  We don’t give the meds, he is all over the place.  First day of break he wears his aggression on his sleeve.  Unable to do that again, we do give the meds the next day, but it’s too late, the anger and agitation is already unleashed.  Now we try again a couple more days without the meds.  He is on a chemical rollercoaster that is not really fair to him. We know our home is not structured enough, it’s too messy.  We know that screens sometimes help – except when they don’t, and then they really don’t (where do you think he gets these ideas to ‘prank’ people, the ideas to have food ‘challenges,’ that particular way of spitting out that particular insult with such gusto?).  We know he needs to avoid sugar in mass quantity (learned that one the hard way), but then he finds a secret stash of Smarties that were purchased to put into cookies over the holidays.  So all hell breaks lose at 8.45 am when he is told that he must wait until after lunch for those.  Flailing, sailing, crashing chaos ensues.

Our son has always liked wigs, dress up clothes, and has been pining for sparkly heels for years.  Yesterday I finally relented and he has now a pair of shimmery gel shoe heels.  He loves them.  He has been dancing around wearing a wig and feeling particularly pleased.  But the heels are remarkably hard for so-called ‘gel’ and they hurt if they are aimed at one of us – intentionally or not.  The buckle is fiddly and he cannot do it on his own.  They are quickly becoming Public Enemy Number One in our house. The rules are he is allowed these clothes for dress up and performing at home, but then he wants to wear them on the dog walk.  You can guess for yourself where this is heading.

I do not and never have cared a whit whether someone choses to love a man or a woman.  I believe love in all its wonder is to be treasured.  I will love my kids whomever they love.  I respect and celebrate it when people push gender stereotypes and dress the way they want to dress.  I can handle it if my son prefers to sparkle and shine.

I like to think we are cool parents.  We have slowly over the years increased our son’s dress up basket to include skirts and sequins.  He absolutely loves dancing in costume.  He loves the feel of hair or silk around his face as he twirls.  He’s good, really good, at performing.  Who am I to say he might not be the next glam rock sensation (or pop-glam or just glam)?

But every bit of my self-perceived ‘coolness’ evaporates when it is tested by the thought of sending my vulnerable son out there wearing a wig and sparkly heels into a world that already doesn’t doesn’t understand him.  So we compromise and he has an Egyptian pharaoh headdress that is ok for outside, some blue half-glitter boys’ boots he can (but never does) wear on the scooter.  These are arbitrary distinctions totally lost on a child with FASD.  I know it, I get it, and we pay for this confusion nearly every day.

Perhaps I digress, but not really.  The point is our lives are arbitrary.  There is no rhyme or reason to some of these moments that cascade into chaos. You may read this and think you can spot ten different things that we are doing wrong (get all candy out of the house, don’t let him have screens, don’t bring the sparkly shoes into the house).  And you are probably right.

This is complex, interrelated.  Things tie into other things in ways you may not realize from afar.  For our son, it is dress up clothes, which way the windshield wipers go on a car, whether streetlights overhang or are straight up, if the spoon is touching the food when he sits down to eat.  The triggers are random and run deep and vary from kid to kid. One day something bothers him, other days it does not.  If something catches his eye at just the right moment, suddenly that can become the focus of intense desire or revulsion.

Our son has brain damage.  He cannot maneuver the world in the way a neurotypical person would.  I cannot fully explain or understand how the various connections are firing off or getting misdirected inside his head.  I just know that if he wants something one way and if at the moment he cannot understand why it cannot be that way, bam! We are off and running.

The key of course is giving him the tools to be able to begin to understand himself.  We try.  Every day we try.  We improvise.  But some days, weeks, months, it feels sorely inadequate, our learning is not fast enough.  He is speeding toward adolescence, and we are all still woefully unprepared for the hormonal storm that we know is coming.

The moment after a blow out, we are stunned.  He is perhaps up in his room, in the dark, rocking to music.  We are perhaps staring at our own screens, not yet ready to talk, too edgy, feeling defeated.  Scared.  Maybe my now-saint-of-a-husband maneuvered him out the door and our son is already racing by the river on his scooter, with the dog, laughing and loving the way the wind streams through his pharaoh headdress, the meltdown gone now from his being.

In these moments after the storm, I am empty.  I know that we have it better than many, many parents raising children with FASDs.  I know our son is one of the ‘lucky ones’.  The alcohol did not do its worst damage on him.  But still, we parents are left adrift by a System that doesn’t give us enough to really help our children.  We improvise, we become advocates ourselves, parent networks try to fill in the gaps where the System has not yet provided support.  But seriously, it’s not good enough.

By some estimates 3-5% of the UK population has been affected in some way by in utero exposure to alcohol.  There is a spectrum of needs.  Thousands of scenes like the one I described are being played out in houses across the country. And that’s just one window into the life of a child with an FASD, there are other ways this brain injury presents in other kids, in our kid, in other settings.  The effects last forever.  There are thousands of adults walking through this world misunderstood, perhaps undiagnosed. Struggling.

A limited number of experts know how to advise us to avoid the scenes I described.  There are therapeutic strategies that have been tried and tested worldwide.  There are educators who know how to teach our kids.  There are answers out there.  But those experts who are already engaging in this field need funding, more need to be trained, the greater population needs to be better educated, and families need support.

But, for now, I must leave these thoughts.  They are back from the dog walk.  It’s time to push my maternal reset button.  Smiles.  Here we go.