It’s that time of the year. Fasten your sleighbelts. Batten down the breakable angels. Put those extra Christmas biscuits somewhere up high. And cherish those sparkling eyes lit up with the glow of Christmas lights, for sure as Rudolph’s nose shines, there will be tears. A mighty crash or ten or more. Yes, ‘tis the season to be jolly. That’s what they say. And it is. But it is also an LED-flashing-frantic minefield for kids with Fetal Alcohol Spectrum Disorders. We parents balance the heartwarming joys of the season with the added confusion, expectations, and overstimulation it provides for our children. We step carefully through the merriment, always alert for that one jingling bell too far, that one whatever-it-is that will send our child into a Santa-induced tailspin, right over the edge, into an FASD meltdown with Abominable Snowman-esque ferocity that would make even dear Frosty cringe.
It’s already happening in our house, and we don’t have one shimmery anything out of a box yet. It started a couple of weeks ago as the school choir began to prepare carols for concerts and when those first Christmas sale racks started to appear in stores, next to the plastic, glittery, enticingly decorated trees. There have been detentions and curse words and pocketed gum from shops and kicks aimed at the dog. Spitting and hitting at the school play rehearsals. Refusals to do homework and massive meltdowns and behaviors that rival any we have seen in years. (Ironically, while accomplishing some of the best test results yet, confusingly.)
In fact, I’m sitting here now, with a pajama-wearing supposed-to-be choir singer tucked up in bed, having kicked, spit and screamed (and worse) his way through the early evening, insisting he did not want to perform at the town’s Christmas street celebration tonight. He had been crying alone in the bath even after we made the decision to stay home while his dad and big brother headed out to enjoy the festivities. There will be no joyful laughing under the bubble snow machine on the street for our son this year. Maybe we should have made him go tonight, but we encourage him to tell us when he thinks something might be too much for him. So we’ve tucked him up and hope he doesn’t have too many sugar plums dancing in his head, since a mere 12 hours ago (that feel like 50) he’d snuck downstairs in the dark and started this day by eating caster sugar straight from a box.
If I’m honest, it’s already been a really long December. At least so far. It’s the 4th. The advent calendar proves it. Half the days were ransacked by 9.00 am on the first day of December. So far we’re still standing. There are only three weeks left to go. Well, four really, if you count Boxing Day and New Year’s Eve.
Kids with the sort of brain injury caused by exposure to alcohol while in the womb have a need for predictability and order. They have difficulty with sensory overload. They have individual complex and wide-ranging issues. In our experience, nearly every challenge related to FASD becomes heightened during this so-called festive season. In our house, it’s Christmas-induced-chaos. There are major holidays for most traditions in this period, we know we are not alone. This season is tough for kids with FASD, no matter what tradition or culture.
This trepidation as we approach this month is bewildering for me personally. I love the magic, the surprise, the sparkle on a dark winter’s night. I was the kid who saw Santa in the sky, saw his boots as he went up our fireplace. I love little drummer boys. The idea of someone joyfully falling on their knees in wonder and amazement when a child is born. Skating on the edge of religiousness for a non-believer like me is heady stuff, enjoying this month where the solstice, Hallmark and the pulpits meet. It’s a time of year when I believe we can overcome. I believe in the giving and the loving and the promise of a bright new year.
Our son does too, really. He loves it. He loves Christmas as much as he hates it. And he alternates between those two realities faster than Santa shimmies down a chimney.
We could tick boxes, the symptoms are as obvious as ever, even if at this time of year they are wrapped up in tinsel and tied up with big red bows:
- Kids with FASD need predictable schedules. Yet at this time of year the school schedule is altered – there is ice skating and carol singing. Cancelled classes. Non-uniform days and book sales. Assemblies and evening concerts. (My particular favourite was his old primary school’s preference for having Father Christmas visit a Christmas “Fayre” in November.)
- Kids with FASD are literal. They are not ones to easily understand allegories or myths. If a parent says something is so, then it is real. Like the tooth fairy. Or, in this case, the big guy wearing the red suit. We currently are struggling with this in our house. He just started secondary school. He hears Things. He tests out those Things at home. (He just lost a tooth two days ago and for the first time ever he has not planted the tooth under his pillow.) There are bigger Things on his mind. “Father Christmas is not Real,” he says angrily one day. Suddenly every day, multiple times each day, he is filming his stuffed animals in a reenactment of “A Christmas Carol” where the nightcap-wearing teddy-bear Scrooge is bah-humbugging mightily at the world and insisting that there is no Father Christmas. Meanwhile, his ever-cheerful and wide-eyed raccoon nephew recites my recent mantra that he needn’t worry, Santa brings presents to those kids who believe and if you don’t believe your parents bring you presents. Even if you think you have been naughty you will get presents (because let’s face it, there have been a sleigh load of technical fouls in this department lately). Father Christmas knows you want to be good but that you can’t always help it. Then Scrooge eventually admits that he has seen the Christmas spirits, proclaims that Santa is real, and asks God to bless us all, every one. This is how Dickens is playing in our house these days. Every day. Many times a day.
- Kids with FASD have trouble understanding time. Once he sees that first decorated tree, he goes into high gear. Since the advent calendar is unreliable in our house for previously discussed reasons, we have to focus hard to reinforce just how many sleeps it is until the actual day.
- Expectations are hard to manage for kids with FASD. Our son doesn’t really get it that the elves up there in the North Pole need some time to work their magic, especially if coordinating with China via Ebay, for example. He doesn’t see anything wrong with supplementing the expanding list, up until the night before Christmas. And of course, there is no sense of monetary scale for the presents, since kids with FASD often have trouble with the mathematic concepts behind money. Inevitably, if the North Pole tries to steer him away from wanting, for example, a glittery pair of high heel dance shoes, the disappointment is deep and profound. Santa’s helpers might also try to redirect the autistic-leaning repetition of asking for the same items every year, thinking there are only so many marble runs one house can hold, after all. And equally inevitably, if something desired doesn’t appear under the tree, it will lead to tears. Yes, this happens in most families where the stockings are hung, but I am here to tell you, there is a whole other Richter scale of disappointment out there for kids with special needs who don’t quite get what they wanted. It is possible if not inevitable for Christmas morning to go south by 7.30 am. Repeat experience has proven this, at least in our house. And yet, Santa is a little shocked this year because in addition to more predictable CDs and DVDs, our son also has asked on his Christmas list for a “dark tent” – with some LED lights inside. He is starting to identify his sensory needs (we didn’t know he had ever seen one of these tents). The elves are frantically trying to decide if this is at all feasible given space requirements in our already over-stuffed home.
- De-cluttered physical environments are supposed to be better for kids with FASD. That’s what we have been told. We wouldn’t know, as we have never achieved this, not for one day of our ever-messy lives. But we do know from experience, that adding in rooms full of flashing, shining, spinnable and alas sometimes breakable items, does not provide a particularly calm environment for a child with FASD or his parents. My heart still breaks for that Christmas when he was three or four and we did not know he has FAS – though we knew something was wrong. All he wanted was to do was play with the (expensive, breakable) ornaments on a relative’s tree. We knew – but didn’t know – that it was unfair to him to have him in this overwhelming environment, all the while waiting impossibly for the holy grail of multiple presents after a dinner of foods he doesn’t like.
- Kids with FASD can have sensory disorders. Flashing lights speak to our son more than the rest of us. So it is of course natural that he seeks in all instances to have control of the lights. This is not unexpected for a child who notices the differences in street lights, who analyzes stage lights, who tests every dimmer light he encounters, who opens and closes curtains depending on his needs at that moment. Give him a tree with options, and yes, you will find yourself at 6.00 am assaulted by the flashiest, fastest and quickest-colour-changing option on that little plastic speed dial that never existed on the trees we had as kids. And again, five minutes after you reset it. You might think you want to chide him for this, but beware of the Mighty Meltdown that will, yes, follow.
- Sensory issues affect kids with FASD and make things that should be fun potentially disasters. Hollywood has much to be accountable for. Our son wants snow. On Christmas. So Santa can get here. Our son already has tried on his snow boots, knows where to find his brightest hat and the mittens that mean he doesn’t have to fiddle with glove fingers. But he hates snow, as much as he wants snow. It’s one of those sensory treats he loves immersing himself in – he is a natural snow angel maker. At least until a bit gets down his shirt or in his boots. At which point he might come screaming and flailing asking to get back in to his pyjamas. Luckily, living in grey and muddy England, the skies too rarely provide, adding to his disappoint borne of misplaced hope, though he approaches every puddle from November forward in expectation of an icy top.
It is the season to be jolly. But it’s not the same winter wonderland I knew as a kid, and it’s hard to want to make it shine for him, while worrying if all I am doing is torturing his sensitive self. He yearns for magic and sparkle and joy and that special Christmas feeling. But he hates crowds, he hates noise, he hates cacophony. He can’t handle it, and yet every year we ladle it up without fail, like the turkey gravy and Brussel-sprouts-he-has-to-at-least-try.
He loves its (while he hates it). He can’t have the tree up soon enough, or down fast enough (he usually wants it down on Boxing Day, but we only ever really manage it once school starts, not least because for me, despite everything, taking down Christmas decorations is pretty much the most depressing day of my year). I have trouble letting it go. As a parent of one child with FASD and one neurotypical-teen who channels Christmas even while wearing headphones to block out our household’s “noise, noise, noise” and wife to a husband who is widely known for wearing an elf-hat around town for the entire month of December, I see the good and the bad in the season. It never in my (previous) life occurred to me that a child of mine might struggle most at this most wonderful time of the year.
Maybe the hardest thing of all will be fa-la-la-ing our way through these coming weeks, wanting to share in the spirit with our friends and family while our own home collapses under the pressure of all this cheer – we who can barely make it through a ‘normal’ week (though we hide even that reality from all but our closest family and friends). Friends are churning out sumptuous batches of special Christmas cookies, while in our house we are lucky to have a dinner that didn’t originate in a Birds Eye box. We paste smiles on our faces, plug in the outdoor lights, and wonder what new big-boy vocabulary the next meltdown will unfurl, what further proof we will see that our son is simply not wired for jing-jingling sleighbells and the pungent smells of chestnuts over open fires. He did after all throw me out of his room last night because he didn’t like the smell of the mandarin orange I had just eaten.
But still, we celebrate. We welcome the mayhem, make it glow and shine. Because at the end of the day, this season is supposed to be about welcoming strange, unknown and unheralded miracles into our midst. It is supposed to be about love and peace and the joy of a child, a special child. All kids. It is supposed to be about unconditional giving, even if all someone has to give to this world is a song, the beat of a drum, a rhythm that makes a loved one smile. Every one of us deserves that blessed feeling of being heard, of knowing our unique gifts are appreciated, cherished, needed. Everyone one of us has something to give. As we are ho-ho-holding our homes and our families together over these next most mistletoed and seemingly merry weeks, we must remember those Whos down in Whoville who sang even when their elaborate Christmas dream crumbled. They held hands, they stuck together. Their spirit and love filled the void, and together they found a song, their song. And it was heard.
For ideas on how to survive, check out “101 Holiday Strategies for Fetal Alcohol Spectrum Disorders Supporting yourself and your family” – prepared by FASD Think Tank (2013)
Postscript: It got better. We spent a weekend trying to relax, de-stress, and we gave space and time for enjoyment. So, here is the flip side, the joy. We have to focus on the joy. It’s as much our son’s reality as the rest of it.