It was just me and that machine. Even my wedding ring was left outside that door. Dizzy and uncomfortable, I tried to keep centered while the world jackhammered down on me in staccato bursts. A pinging noise echoed throughout my head, a sonar sound like being in a submarine, wanting, needing to push off toward the open sky. I imagined hanging onto my dad’s shoulders, he’d get me to the air. My thoughts were everywhere, translating these overbearing noises into the familiar. That tap-tapping reminded me of those days on my daddy’s jobs, when all the men were banging nails and building walls, dreams, for the people who would live there. I remembered a fevered moment when my mom brushed my hair from my temple. I pretended that instead of the head brace it was her arms holding me still. I kept pushing away the images of my mom after her chemotherapies, after she was swollen by steroids, after the brain tumor took over. No. I would not, will not, do not go there.
On Wednesday our 11-year old son with Fetal Alcohol Syndrome refused to go to school. The day before had been horrid for him. He couldn’t sit still. The school routine is altered with end of the year exams and events. They hadn’t removed him to a quiet space in time. He was overwrought and lost it to the point of literally barking at a teacher’s aide. They gave him a detention. He was so upset by all of this we had a massive meltdown, one of a spectacular string that has left things broken, walls dented, spirits frayed. We could not get him out the door to school. The SENCO reached out, asked for him to come in for just a short hello, and he did. They wanted to know what is bothering him. He told them he was worried that Mummy has been in hospital. They told him it’s good to go to hospital to find out what is wrong so they can help Mummy feel better.
Then the next morning when I woke him up he asked me in a sweet voice, “Are you becoming a gran?” Images flashed through my head. The bags under my eyes. The pale skin. The oversized shirts, shorts and black socks. The day earlier he told me I should buy hair dye to bring back the blonde. These are all little ways for him in his indirect way to ask me some big questions that he cannot form. How many times in the past two months have I told him I didn’t feel well, that I was tired, that I would do something later, not now. I felt sad for my son, feeling the weight of this on him when he is so young, so needy, so fragile still. I know it is affecting both of our sons, but our youngest with FAS is simply unable to cope when I cannot cope.
The pressures of keeping on keeping on can be overwhelming when we ourselves are not feeling well. The confusions this unleashes for a child with FASD are very real and we must deal with them. We must deal with them when we are tired from yet more vague inputs from distracted doctors. We must deal with them when the room is spinning and our heads are bursting. We must dig deeper than we thought we could. It is something I must do, any parent would do.
I am no expert. And yet, I would bet a million pounds that every family with a special needs child has its core internal strength pulled and frayed to the point of snapping at some time or other. I would bet that even the most positive people of good will find themselves at times like these stretched so thin it feels like it will all fly apart. In our world, things literally sail across the room, break, and smash when we can no longer keep it all together in the way we know we should. Our son thinks it’s his fault. We know better than to blame him. This responsibility makes a hard time even harder. But I cannot turn away from that. And I am not even very sick compared to some FASD parents I have been in contact with via social media. I feel for them. I feel for us all. I feel for the children most of all.
I am a strong woman. I can (kind of) understand my headaches, my dizziness, my strange ear sensations that leave me overexposed to shifting sounds and disoriented. It may be due to something tangible or more likely something harder to pin down, like a virus. Even though I understand it and the range of possibilities, it is bewildering to me. The way I have been feeling has given me new insights into what it must be like for our son when he is inundated with sensation and overwhelmed by it. My inability to stop the conversations around me, even though I say again and again – I can’t hear you, please slow down, I can’t remember, I am not thinking the way I usually do. The way people look at me, they way they don’t really get it that I am not hearing them. Then I get angry. I get crisp. I sulk away and watch another stupid TV show about saying yes to dresses when I really truly could care less about what some spoiled rich kid wears down an aisle. I watch it because it is mind-numbing and easy. I don’t need to hear it all, it’s visual. Yes, I am gaining new insights into my son’s daily struggles.
I have been thinking lately that The System is simply not kind. It’s not kind to leave a mother wondering for nearly 8 weeks as to what may or may not be causing troubles inside her head. It’s not kind to hand me a printed sheet rather than a hug as I leave an MRI room, telling me I will have an appointment in 4-6 weeks to tell me what they may or may not have seen as a result of all that pinging, jackhammering, and pounding. It’s not kind to ignore the worries and shuffle people out the door. Maybe it’s the British stiff-upper-lip that has kept ships from sinking for eons, but it’s not kind. And yes, I will get answers sooner than 6 weeks because I will fight for myself in this cold system.
But even more importantly than my own struggle, it’s just not kind to make parents fight so hard to know what is going on inside their children’s brains. At the same time I am grappling with this personal issue, I am reminded daily that people still have to really battle hard to get someone to consider diagnosing a child with a Fetal Alcohol Spectrum Disorder. It’s simply not kind to the kids – the kids who do not understand why they feel so adrift, so confused, so lost all the time. Why do we force parents who reach out for help to wait months or sometimes years before someone will help them understand their kid’s brain? Why do we so easily blame the parents and their parenting styles when we know that there may be more to it?
It’s just not kind. Months and years in a child’s life are ages. It’s in no one’s interest to delay. Early diagnosis increases the prospects for that person’s life.
This is very real. We know there are many families out there right now seeking a diagnosis to help them understand their children, some with positive proof of maternal drinking and kids showing some of the classic signs of behavioral and other issues. They are being told by doctors that Fetal Alcohol Spectrum Disorders are often used as ‘the easy way out’. They are being told that their parenting is the cause of the behaviors. They are being told they want these acronyms in order to make them feel less guilty. Seriously? That is not kind. No sane person ‘wants’ their child to have irreversible brain damage. No parent wants a diagnosis of an FASD because it is ‘easy.’ A good parent wants to know what it going on so as to meet their child’s needs and maximize his or her potential for a good life.
Imagine a different system. Imagine a system where the doctors were our champions. Imagine a system where the process was more than just stringing together a series of 10-minute appointments over several months, grasping for the little practical bits that can potentially change a life’s trajectory. Imagine a system where someone stopped the manic battling, and just said, come in. How can I help you? What do you need? How is the little one today? How are you today?
Our brains are complex, ornery, defiant. I am not for a minute trying to say my recent experiences are the same as those faced by people whose brains have been affected by exposure to alcohol when they were in utero. What I am saying is that when our brains are involved, the medical community should be kind. It is not just simply one more organ. Our brains control it all – from our moods to our expressive ability to our feelings to our ability to self-regulate. Our brains are the core structure. If we have problems inside our brains we cannot handle the rest of it. And sometimes, the simple kindness of recognizing that can shift everything into a more positive place.
I realize these thoughts are a bit all over the place today. I realize that there is a huge difference between how I am feeling and how someone with FASD feels. All I know is that having something wrong happening from my shoulders up is disorienting to me in ways I have never considered before. I have taken my brain and my senses for granted. I have always relied on a sharp mind and quick reflexes. I am thankful and very humbled to have this chance to think in a different way, to experience life from a less secure and maybe less privileged perspective. I have even more respect now for people who walk through this world with such pressures coming at them from inside as well as outside. I too now have learned to understand the relief of a darkened, quiet room (she types, in a darkened, quiet room). I have felt my compassion for my son deepen through this process.
To all those out there who are struggling with their own issues as they try to help someone with FASD and to those with FASD who continue on even with all the struggles – here’s to you all, to us all. If we can’t find the kindness we wish for out there in the world, let’s at least let it be the one thing we can give in our own corners of the world today. Today I will greet my son with kindness when he awakens. I will try to surround us all with it, despite this ringing in my ears, the woozy rocking, and the state of the world around us. Even if The System is not kind, at least I can (try to) be. Even today when what I really want to do is bury my head under my pillow.
And with that, I literally just heard the patter of little footsteps. Here we go…Happy Saturday…