Parenting a child with Fetal Alcohol Syndrome is a full-on, full-time labour of love. Watching this bright spark-of-a-being spring into each day with enthusiasm and good will is one of the best parts of my life. From that first bounding wake-up and then for every moment he is in my orbit I am on full alert. Or at least I should be. I try. We know that the injury to his brain means he can easily become overwhelmed and defensive. The slippery slide into a massive meltdown is hard to spot sometimes before you are halfway there and clawing to get back to firm ground. Parenting a child with an FASD is constant and intense. It’s hard to understand how it is that people don’t get that. It’s difficult to imagine why people don’t understand and why they underestimate what I mean when I say “it’s been a tough day today.” Sure, when he is at school, or with friends or family, I do my work, the housework, or sit stunned for a while, just being still. But even then, there is a part of my mind focused on planning for his return, creating in my head ways to try to prepare for a smooth re-entry, a peaceful bedtime, a gentle night. The wheels keep turning, constantly. The constant pressure can drain the energy out of anyone.
But I get these weird pauses. There are times when my work takes me away, as in several-time-zones away. I am removed so thoroughly and completely from those immediate pressures (and often thrown into work situations that demand my full attention) that it also is a bit mind numbing. Because of this complete disconnect, I juggle more of the maternal guilt than I ever thought possible. Understanding now the way that we do that our son won’t just grow out of his sensory difficulties has changed things. I feel these work trips more. Understanding now as we do that he has a physical disability as real as but less obvious as if he were missing a limb or his hearing or were blind. He has medical condition as much in need of constant monitoring and support as diabetes, or some other condition that needs consistent regulation and monitoring. He needs us to be reliably there to support him.
I know my being away affects whatever balance we have been able to attain in our house. I come home and I see the effects of my absence everywhere – and not just in the wrong size socks having been put away in the wrong child’s room or some liquid cucumber remains in the fridge that has become a joke among our friends. I feel the impact almost physically. I see the strain on their faces for a few days after my return. I absorb the intensity of our son’s inevitable outburst directed at me after I am home for a day or two. He would never be able to figure out the root cause of his frustration, but it is a pattern I have come to expect. For a child who needs routine, having mummy jet away on an unpredictable basis is not easy. When I asked one professional if this is hurting our son, he said, “There are lots of ‘normal’ and in your house, it’s ‘normal’ for mummy to travel.” (Daddy also travels, but less so. When we are in peak season our eldest calls it ‘tag parenting.’) I know some will think this isn’t the right choice for a mum of a special needs kid to not only have a job, but to have one that requires lots of trips. Maybe sometimes I even agree. But we all have bills, and my career has developed in this direction, and my work is a part of my way of giving back. I think my kids understand the importance my husband and I place on being contributing members of our society. Our work with Non-Governmental Organisations (NGOs) allows us to do that. And really, the situation just is what it is.
I’m sitting right now, six time zones away, reading via email and Facebook about the good and the bad moments that have been happening since I have been away this trip. I can tell my husband is doing a stellar job, and I can feel that things are basically okay – the real tiredness of the pressures of single parenting hasn’t fully kicked in yet. I know it will. (I will say it again, hats off to all of those single parents out there, I truly admire what you are able to do).
Sitting here, reading my husband’s messages, it suddenly hit me. THIS is what it’s like for people, even those close to us, when they look into our daily world. I may be a few thousand miles away, but even for those just across town, this is what they see, the headlines. Oblique references. “Today is a bit harder.” “He had one bad burst of anger when I wouldn’t let him have sweets.” Etc. I know what those words mean, if I allow myself to deconstruct those phrases. But I don’t really want to think too hard about what might have happened when he was denied sweets early in the morning – the tossed shoes, shouting, possible kicking, screaming, throwing. I am helpless from here to help. That moment has passed anyway. I assume it’s calm again. So I look away, go back to other emails, pack it away somewhere in my head, trust that they all will survive until I come home. Trust that my husband is telling the truth, and hope he would be more direct if there were a problem.
This must be how it is for others looking in. They know it’s happening. They understand it can get bad, but they don’t see how to help the situation. And because some of it can be fleeting, they probably think it’s over now, so it’s all okay. Unless we open the window a little wider, give a little more detail, ask some specific ‘asks’, they won’t really know how to interpret, and certainly won’t know how to act upon, what it is we are saying.
I understand my husband is carefully planning this day. It looks like it’s all under control, well-thought out. And yet, reading between those lines, I know that he probably just wants 45 minutes to have a bath, but he won’t ask anyone to come have a cup of coffee at the house and play a game with our son while he has that bath. It sounds trivial, but we all need to recharge. I think recharging is one of the most important things we parents of kids with an FASD need. It’s one of the easiest things others can help with – those hours here and there can make or break us. If someone just brings our son to the park or out for hot chocolate, it gives us the space to catch up with ourselves, to re-center, or just to zone out a little, to give our radars a rest.
I know my parental guilt is not unique, and I know I would feel it even if I were in our own county. We all feel a little guilty for all kinds of reasons every time we leave our special needs child with someone else. We feel that moment of release of responsibility, but then we also feel that no one else fully understands our child. We worry that a missed signal might lead to a spiral. We wonder if others will be as concerned about the food texture, how scratchy that tag is on the shirt, how today he just needs a little extra compassion because he couldn’t fall asleep yet again last night.
I am not special as a mum who travels for work. All of us feel these tugs on our heartstrings as we let our loved ones venture out from under our wings. But maybe the one insight I get when I am working is to understand how hard it must be for others on the outside looking in to take that step into our sometimes hectic and unpredictable lives. I see how different it is to be standing outside the fray, looking in, and wondering whether and how to get inside to help.
P.S. – My husband just read this, and said I shouldn’t worry. He had a quick bath after all, and is looking forward to a long soak once our son is back at school.