Highs and lows. Hope and fear. Cuddles and rage. Adrenaline and lethargy. Togetherness and loneliness. Our last couple of weeks have had so many ups and downs it’s hard to know how to disentangle it all, how to amplify the positives and how to minimize the negatives.
I have started at least three different blog posts over the past two weeks, each time feeling like I was not true to the experiences we have been having, each time feeling like I was only telling a part of the story. Each time feeling like I was being misleading if I mentioned one thing and not another.
Sitting here now that the house is quiet, thinking about this over coffee that is growing cold, I realize that inability to figure things out is actually the point. With FASD there is no even keel, or at least we have yet to find it if it does exist. Life is constantly changing. One minute is triumphant, the next is soul-destroying. It’s hard for those outside our home to see this. Our son manages fairly well in public and at school. The real ups and downs come out at home, his safe place, the place where the full impact of trying so hard throughout his day means he releases it all here. When he simply cannot hold it in one more minute, he knows – and I hope he always remembers this – that if he stumbles here, if his internal disequilibrium overflows or bursts out, here we will always help him up after that moment passes. As it always does.
Triumphs – we have had some in the past two weeks. It seems the new medication our son is taking has had profoundly positive effects on his ability to focus in school. We are being told that it is transformative in his ability to not only work until the end of the day but also to do more of his work independently. The Special Needs team wants to reevaluate him after the break, as they think with this new medication they may be able to revise some of what they thought they knew about his abilities. This medication is providing a clearer window now into the mind of the child we always knew had the potential to do more than they thought he could. He is bringing home awards for sustained effort and good work. We couldn’t be more proud, more deeply and seriously pleased.
And yet we live with the recent memory of what it was like for him during those few weeks we had him off all of the medication. Those days when he couldn’t sit still, his internal engine revving so hard he was literally upside down and in constant motion, unable to stop the jittering, unable to be still. We remember the days when the last medication had side effects that crept up on us, turning our sweet young son into a sailor-mouthed, aggressive handful in the mornings and evenings. We walk with trepidation as we know this drug too may develop side effects. We walk with uneasiness, the warning echoing in our heads from one adult with FASD who said his parents set him up for addiction by putting him on these drugs at an early age. So we try to hold onto the encouraging messages from the school. We remind ourselves these medications can give him time, space to learn more, absorb more, to develop coping mechanisms while he is young, before he hits those teenage storms we know are coming. We still have one last hurdle over this holiday, as we move him to a long-lasting version of the medication, to make his days less of a chemical rollercoaster. We are tentatively hopeful but prepared in case these next weeks become another minefield.
Scares – we have had those as well, especially during this last week. For four days in a row he had taken possession of either a lighter or matches. The first we knew about it was when the school notified us that he was warned/reprimanded because he had a rusty lighter in his pocket that he said came from our garden. I never believed that. We do not smoke and have not had lighters here, though it’s not impossible a guest may have left one out there. Then over the next two days, he had (despite our searching him and the school searching him) two more lighters at home, new ones this time, one of which my husband found him playing with at 10.00 at night when I thought he was asleep. Flicking the lighter unsuccessfully in his bottom bunk that is surrounded by oh-so flammable curtains.
My house burned down in the middle of the night when I was a kid, about his age. This scenario leaves me cold, immovable. Scared. He also had some matches at school that he somehow got from the chemistry room. We learned that when he was with his auntie at the allotment last Sunday he also had found a lighter and was playing with it. I noticed he was watching a video on YouTube on how to light matches. Our son, during the same week as we were getting such good news at school, seemed to be turning into a junior pyromaniac.
Heart-stopping, stomach-thudding stuff. The kind of news that pounds its way into your head, and refuses to let you sleep at 2:00 am or 4:00am. The kind of stuff that makes you sniff for the smell of burning bedclothes even when you know there are no more lighters. That makes you hope desperately there are no more lighters. That makes you realize you will never be able to control all the variables, to guard against every danger. The kind of stuff that leaves you unable to think or move or process information, probably in much the same way your child’s brain freezes many times, every day.
Sure, we have had the talks. Repeatedly. I have used every maternal trick possible to wheedle out of him where these things are coming from. My gut instinct is this is some kind of bullying. His FASD means he cannot tell me fully what has been happening since he cannot remember the timelines. His brain confabulates – it fills in the details he can’t quite remember or can’t face with other versions of plausible stories. We latch onto a few recurring themes having to do with unnamed Year 10 kids who smoke and something about a back field at the school. We discuss this daily with the Special Needs team at the school. Everyone is perplexed as he has not been alone long enough to go wandering afar.
We will probably never know where these things have been coming from. The committed and thoughtful SENCO stayed up late making a social story about true ‘friends’ for him. We discuss with him the dangers of fire, and why this is much more serious than bringing home forbidden candy his friends give to him. We give him phrases and words to use. We practice saying “no thank you” if someone offers him a cigarette or a lighter. We remind him to go straight to a teacher. We come at this from every direction we know how. And then I find a huge plastic container of toffees under his bed that he somehow absconded from his auntie’s car, and I feel deflated – if he can smuggle something like that past us all, how can we possibly be on guard for all of the small but potentially deadly dangers. I ask my husband to buy more fire extinguishers, but he doesn’t understand my underlying urgencies. It’s a jumble – teetering on the edge of that place I dare not go. I described it recently, that knowledge I have that if I start crying I will not stop. The overwhelming sadness I have for the realities and dangers my son will face again and again and again, those things beyond his control and beyond his comprehension, at least for now.
There is no malice in our son. Just like when he practiced breaking eggs over his head in the bathtub, he is exploring, feeding his underdeveloped senses, being scientific in his way. His brain cannot link cause and effect so he doesn’t really get it that some things are more dangerous than others – certainly not in the moment of intense interest and discovery. He is genuinely dismayed when he feels we are overreacting to some thing or another.
Above all we must be sure he feels safe in coming to us with any problem. We must not let him feel ‘naughty’. For his safety and ours, he must know he can reach out to us on those times when he gets himself out on a limb and doesn’t know how to climb back without help. We must be his safe place. We cannot make him retreat into himself and hide those things that happen because of his brain mechanics. We must always show him our love and understanding. Even as he plays with fire.
His self-confidence and self-image will be the key to how he is able to cope over the coming years. We know this. If he is to avoid the statistics, and they are grim, we must give him every possible chance to understand that his differences do not define him. We must celebrate those triumphs and minimize the pitfalls. And so, despite having spent every night this week alert for flames that I know can burn down a houseful of dreams, I smile and hug him every morning. I scratch his back, a bit sad that now that he has grown up a bit he is able to direct me more – “To the left, up a bit, there, to the right” rather than the previously adorable “No Mummy, not there! Scratch where it’s itchy!”
I am in pain, physical pain from an injury and due to nerve damage in my spine. I have an intense job, and it is extremely difficult to juggle that and my physical issues and the increasing demands of this new phase of parenting. Everything jumbles together and amplifies the stresses of the days.
I also know that we are not alone, and we are by far not facing the worst challenges that FASD can throw at a family. Last weekend we organized another FASD support group meeting. I tried to write about that too, but was unable to explain the seesaw effect of hearing more about the struggles and successes other families face. The heartbreaks and smiles. The hopes and fears. Ups and downs. Triumphs and pitfalls. There is nothing particularly special about anything I have just written about. It is happening in houses all across the country, all around the world.
FASD is so little understood in our society. The stigma suffocates any real discussion about how to help the 2% of our society that struggles with the range of conditions associated with this physical disability. It is mind-numbingly wearying as a parent to know that our son carries not only the weight of living every moment of every day with this condition, but that we have to prepare him for a life of explaining himself to others who refuse to look at him as a whole person and to understand his disability. People refuse to face FASD because if they do they may have to re-evaluate what assumptions they reconcile within themselves about drinking and pregnancy. It’s backward, archaic, and short-sighted of our policy makers to allow this silence to continue.