We have a family member from across the ocean flying in for a visit. Like a deer in headlights, I look around our house, survey our lives, and decide there is no way to sweep all this under the carpet. There is nothing I can do to ‘fix’ this. The life I once knew, the life I grew to expect – that is not the life I lead. We are not only 3,000 miles away from the world this family member knows. We might as well be a million miles away. A different galaxy. His wife, whom I love dearly, recently was recognized as a ‘Mother of the Year.’ So well-deserved was that award that I feel ridiculous even feeling self-conscious – I would never claim to be in that league. I am pretty sure there is not an FASD parent or carer out there who feels qualified for such a distinction because our lives are so thoroughly discombobulated, so completely up-ended, all the time. Maybe, once in a blue moon, I might be in the running for Mother of the Nano Second. That’s how we rock and roll around here. Moment by moment.
So, giving myself a break (and acknowledging reality), I decided yesterday that rather than feel a sense of shame about inviting someone from a land far away into this chaos, I would look at it instead as a gift we are extending to him – a sign that we trust him enough with our family’s most difficult truths to allow him in.
That said, I would like to prepare a survival guide for him, with some tips to inoculate him before he crosses into the Twilight Zone.
- Don’t look down. My mom used to pride herself on the fact that you could eat off her kitchen floor. This is also true here – on any one of our floors you could probably find enough dropped grapes, cheerios and chips to have a full feast, but I am not sure that is what my mother meant. Of course, the dust bunnies might get to the food before you do. Actually, forget dust bunnies. Think tumbleweed from the Wild West. These new forms of flora and fauna are in part gestating because our youngest sneaks food, rarely sits at the table, and sometimes (OK, often) spits out what he doesn’t like. He doesn’t always remember to tidy up. There are Pepperami wrappers squirrelled away in the most remarkable places. It is also because actual cleaning has been relegated to a luxury activity in our home. Never fear, I do know what a clean home looks like, and in fact I know how to clean one. I grew up with order. It was not unknown for my mother to enter my room at 7 am with a vacuum and for me to jump out of bed and take it from her so I could finish for her. In contrast, when I vacuum, our kids ask who is coming over, since that is the only association they have with that item. It is not due to laziness. In part it’s because our youngest gets completely unsettled by the noise, he retreats, he covers his ears. He hates it. It’s also because we can rarely lose focus on our youngest long enough to vacuum the full house. Sure, we could do it when he is at school or out of the house. But honestly, when he is not here, we often take a rest. And after all, if you stop looking down, you stop worrying so much about it.
- Don’t look laterally. Our family’s chaos is visible the moment you walk through our door. Papers and books and bills and mail are everywhere. My mom had eagle-eyed control over what came in and out of our house, her little multi-pocket file system was a wonder, and it perfectly matched the calendar on her wall. She. Was. Organized. Here we have varying stacks, piles, and other piles – recognizable by height. Like strata in the rock face, we estimate how old one stack is by various markers – like, ‘that homework was from last term.’ We can barely keep track of all the various medical and school appointments and assessments – the only sure way is to stick them on the refrigerator where we KNOW we will see them, and hope we have entered them properly into our phone calendars that don’t talk to each other across the Mac/PC divide. Toys are everywhere they shouldn’t be with uncanny accuracy. Our son fixates on certain things at certain times. This requires that they are visible, if we put them away, he is restless until he has them out again. He occasionally goes on walkabouts around the edges of the room, fixates on the Need To Know what is under which bookcase. Those moments (which teeter on the edge of a meltdown) are the other time (in addition to visitors) that we dare a deep clean. Our son has a love/hate relationship with his favorite toys. I apologize in advance if you step on marbles. They do get thrown with frequency around here when he loses control of his impulses. So, it is best to ignore your peripheral vision when visiting our house. And to wear thick socks or hard soles. And to ignore our son when he might be looking under the couches or refrigerator with a torch.
- Don’t look behind closed doors. This is for your own well-being. The laundry piles rule our house. They are tall, intimidating, and haunting. Our youngest is tough on clothes. There is no double-dipping into previously worn clothes here with all his splashing in puddles, experimenting with TipEx, forgetting to use tissues, or having minor accidents when totally focused on some activity. This requires triage on the laundry piles – the Most Essential gets washed first. It is quite possible that the items at the very bottom might have been there for months, fancier clothes worn on a special work trip or for a special occasion. Don’t tell anyone. But never fear, our sweatpants and t-shirts are frequently used and washed. True, our beds are rarely made (which is quite remarkable given how easy it is to make a bed with a duvet). But honestly, we are usually happy enough if the floors are relatively clear from stumbling hazards. It’s a low bar, and we often don’t meet it. There are no shining furniture surfaces, in part because once laundry is done it rarely makes it into the drawers, and also because dust will have settled on any other rare free space. The kids also know that the smell of furniture polish means someone is coming over. But please don’t feel insulted if we have not broken out the Pledge for your visit. It only means a) we trust you, and b) we are really, really tired right now. And yes, we know our house should be ordered and neat for our son with FASD. We know. We have read the advice a million times. Kids with FASD need less input, neat rooms, a controlled environment with visual cues and a predictable schedule. We know. We know. We know. But we are not yet at a place where we can do that. We are human. Our lives are busy. We work from home, and that helps us have the flexibility we need. But somehow we do still work even if the home office has been termed the ‘cargo bay’ by our eldest. And yet, our family functions despite the chaos. Just. This is an area where I am most unforgiving of myself. But if it wasn’t this, it would be something else. Raising a child with special needs opens the door to a massive amount of self-doubt. I have always said there are infinite numbers of ways to screw up your kids. When you think you have it handled on one front, some other part of things falls apart. We can’t do everything. So please, just ignore what is past those doors, even if our son drags you up there to find the dress up clothes. And humor me and pretend you did not see the Laundry Saschwatch hovering in the corner.
- Don’t be insulted if I have ordered pizza and, seriously, don’t expect us all to sit around a table for more than the first 15 minutes. Don’t get me wrong. I love food. I love to cook. I love gathering people around a table to enjoy the food I have creatively agonized over for several hours. I like candlelight and cloth napkins and funky serving plates. Love it. But don’t get your hopes up. We don’t do that here. Our youngest has difficulty sitting still and being alone. I cannot take my focus off of him long enough to properly cook. Dinnertime is the ‘witching hour’ in our house, the hardest part of the day for a kid who finds it so hard to keep himself together ‘out there’ in the world. We have learned the hard way that it is best not to ignite battles at that time of day, when his medication is leaving his system, and when his is like a powder keg waiting for a spark. So whatever I serve you, please know it’s not what I want to be serving you. And don’t worry, I really don’t expect it will be eaten and enjoyed by all: a) because I am constantly in a Cold War with English tastebuds and b) because half the time something might get rejected just because someone ‘breathed’ on it. Seriously. Please don’t tut-tut if I don’t make our son eat, don’t ask him to finish what’s on his plate, let him leave the table, and ignore it when I hear him ‘sneak’ some crisps from the cupboard. Yes, I will have heard him opening that drawer. He doesn’t know I know and doesn’t realize sometimes I decide quantities of calories are more important than protein. Forcing him to eat a food he finds offensive due to some transient or incomprehensible sensory problem is a recipe for a meltdown that could take us into orbit. Strategic timing is key – so don’t be surprised when we give him a burger for breakfast. Yes, we know he has dark allergic circles under his eyes – probably from sneaking prohibited milk protein products at school. Or from that spaghetti carbonara we let him have because he was craving it, and it has calories. The experts tell us he is not starving. Never fear, we did check. He is at least not starving.
- Don’t be shocked at our family’s reliance on screens. We know, believe me, we know there are downsides to kids using screens. We had every intention of having kids who were artistic, well-adjusted, and who only used screens sparingly. But music with or without headphones helps our youngest relax and most of that is digital these days (if you see his scattered CD collection, you will understand why). Headphones and computer games (no first-person shooting) help our oldest sail through the chaos with a remarkably laid-back attitude. We do pay attention, we do channel them toward productive sites. We have three rules that have served us well: not too much skin, no violence, and no bad words. In fact, the youngest has recently been teaching himself Mandarin Chinese, Russian, French and Arabic on Little Pim videos. What parent wouldn’t be proud of that? (For the moment, we will ignore the fact he also searched for ‘how to light a lighter with a match’ recently. But that does remind me, please do let us know if you see him with matches or a lighter – this is another recent fixation.) And, just for the record, we do have ‘no screens’ mornings on the weekend. We must get points for that at least. Even when we pretend we don’t know why our eldest suddenly is ‘sleeping late’ or our youngest just wants to be alone in his room. Our parenting style is a never-ending series of trade-offs in support of the larger good. Sometimes that larger good is literally the chance to finish a cup of coffee in peace.
- Don’t think we are ‘soft’ or unaware that our child has just been rude beyond words. We hear it. We see it. We know how horrible and unacceptable this all seems to you. We are not tired to the point of not caring about this. We know we should not be learning crude vocabulary from an 11-year old. Please, when you feel appalled, please remember, we are parenting a child with brain damage – it’s a hidden disability. If he were blind or deaf you would not think twice if we made certain accommodations. We are accommodating our son’s needs, upon expert advice. In those moments, he is becoming dysregulated. Yes, when we were young, we would have been sent to bed without food for a week as a result of those words. (It doesn’t matter that our son regularly goes to bed without eating, that’s not the point.) Those behaviors you are witnessing are signs that his brain is becoming overstimulated, overwhelmed. Despite every macho-parent instinct we might have to tell him off (and even when we forget ourselves and give into that instinct), the reality is we need most of all to slow things down, get him to calm down, give the ‘thinking’ part of his brain a chance to get back in control of the ‘fight and flight’ part of his brain. Obviously we know throwing, kicking, spitting, biting, and foul language is not okay. But in that moment, that is not our primary focus. We will talk with him about it later, and no, there will be no ‘consequences’ for this behavior. Not as you would recognize them. Our primary job will be to reassure him, to help him understand we know he can’t always control himself, to help him learn how to recognize and someday control the triggers, and to tell him we love him unconditionally. Kids with FASD too often end up with addictions or in jail. Our job is keeping his self-confidence up so he doesn’t end up becoming a statistic. We are in this for the long-game. So we overlook a few fouls and keep our eyes on the goal post. But probably you won’t see any of this behavior anyway because he will be trying to keep it together for you. But we will be tiptoeing in ways you may not notice, because we know it is lurking just there, around the corner. If you are here late for the witching hour or early in the morning you are more likely to see it. But it is always lurking in the shadows.
- Don’t be surprised when our child acts much younger than his age. Yes, we indulge his silliness and his childish behavior. This is also on medical advice. The emotional age of kids with FASD is generally half their chronological age. When stressed, that can be even lower. So if you hear him pretend to be a baby, see him wearing outlandish dress up clothes, or see him playing with a simple toy one minute while another minute he is putting together electric circuits, please understand this is who he is. There is no point to trying for force him to act his age. He is.
- Please, don’t judge. It’s an FASD parent’s fear, that others are judging. We know you are. That’s ok. You really don’t need to. We kick ourselves enough anyway. We do what we need to do. We are in survival mode. Also, please don’t be shocked when you see my husband and I taking horrible shortcuts with each other. Our love is strong. We are doing what many couples can’t – we are managing to get through this together. It’s not pretty, but our relationship is deep enough to hold tight through the storms and we still picture that day when our rocking chairs will be side by side and we will still spout our unsolicited advice to world leaders while watching the evening news. Yes, we know we should be more gentle. Yes, we know we should do ‘date nights’. Yes we know romance is important. But knowing that is different that managing it. We are trying. That’s the thing, we are trying. And sometimes a well-timed and understanding shrug of the shoulders can be as romantic as a candlelit meal. That shout aimed at each other rather than at a storming child, can be the biggest sign of unshakable love. We know we can take it.
- Please, despite all of the above, please don’t underestimate our son. This is a child who once converted musical notes to a color coded system. A child who can pull one of a hundred books off the shelf, open to a specific page, and show something to back up a point he is trying to make. This is a child who see things we all miss – the minute deviances in designs of different marble run pieces, the way windshield wipers go on different cars. He remembers the exact route to places he has visited only one or two times. Who suddenly scores two levels higher than anticipated on a maths test. His brain is complex, complicated, the links and neural pathways are not the same as in yours or mine. But it works. It works remarkably well considering he is probably only able to process every third word he hears because people talk too fast. Just because he cannot always control it, just because he cannot always access the information that is there, this does not mean his brain is not magnificent. He is gifted in music and dancing – probably a positive result of the fact that half of his brain often works without input from the other half. (And not just because he will leave one song on repeat for hours til he has every nuance locked into every fibre of his being.) His body is a wonder – his strength and physical ability have always been precocious. The flips he used to do off the bookshelves onto our couch have laid the groundwork for a fine young gymnast. He might seem like he is not ‘getting it’ today but a month from now he will demonstrate he heard what you were saying. Just because he can’t answer standard test questions in a busy, noisy school, does not mean he doesn’t know. We know he will be an awesome adult. We have had the privilege of getting to know adults with FASD via social media. Their lives can be astounding and fulfilling and giving. We love showing him the accomplishments of others like him. We are building now the foundation for that future. Even if we seem like we are babying, that doesn’t mean we are not preparing him for an amazingly meaningful adulthood.
- We are honoured to have you visit our house. You wouldn’t be here if we didn’t trust you. We are so tired of pretending like everything is ‘normal’ in our house. It is not. We know you will see this. We couldn’t hide it if we tried. For too long we have been doing this alone. It is only in the past year or so that we have opened up to the world about our family’s journey. We are still learning how to do this. You should meet some of the awesome families we have had the chance to meet. We are rookies. We don’t really know what to say, how to act when we let others in. But we cannot pretend anymore. We want you to visit. We want you to laugh and see the joy with us. We sometimes want a shoulder to cry on, because this is all so challenging and sometimes scary. We need people to help us get past this continuing sense of guilt that our world is not perfect.
OK, so now that you are armed and ready, welcome! Welcome to our ‘Home, Chaotic, Home’. Try not to trip. We hope you don’t have dust allergies. Don’t look at anything. Ignore most of what you hear, and welcome into our world and into our lives. We wish this visit could be all about you as we are genuinely interested in your life and your world – in fact we are starved for news from The Outside. But more than likely our son’s needs will limit what we can do, when we do it, where we do it. You may find we are only listening with half an ear because we are assessing just how ominous that silence may be, or what exactly that door closing meant, what the crash might have been.
Nevertheless – despite the messy house, the lack of complete attention, the absence of table linen – we do want you here, more than you can know. We want you to get to know our children. The one thing we want you to see is how their eyes sparkle. We hope you will take away from our home our deep sense of family that is at the core of all we do. We hope you feel a little lighter having been touched in some way (hopefully that does not involve airborne food) the inherent optimism that underlies everything we do. We believe in our children. We believe with all of our souls in a bright future. Our family may look different, but we are real. And if we are honest we are even a little – a lot – lonely.
So yes, please know you are so very welcome to our pizza-eating, mess-ignoring, loudly chaotic, whirlwind of an inherently good if exhausting life.
(Post script – I am primarily writing this for other families affected by FASD, who I know have similar hesitancies when opening their lives to an extended group of family and friends. It is not because I have any particular worries about this week’s visitor. I thank him in advance for helping me to frame this blog post. And for the joy and goodwill I know he brings with him.)