Sometimes my job takes me away from home. Quite often, actually. My husband also travels at times for work. Our eldest calls it ‘tag parenting.’ When we learned that our youngest son has Fetal Alcohol Syndrome we were told that a regular routine is best. When we asked an expert if this travel would negatively impact our son he said, “There’s a lot of kinds of normal. For your family, the normal routine is that Mum and Dad travel.” I’m not sure I bought that then, and after coming home to a house in crisis upon return from my most recent trip away, I am not sure I buy it now. But jobs are limited, I have responsibilities, money is tight, and my work is part of who I am.
Parents of kids with special needs know never ending self-doubt, the feeling of never having done enough. Always wondering if there is something more we should do. Wanting the world for our kids, and not being able to deliver it. Wishing above all for a quiet, normal day. Knowing that day will never come. Knowing that our kids experience a different kind of ‘normal’.
But the reality is that we do influence and shape their world. The pressure is immense. We are the threshold between a bad outcome and a good outcome. Our guidance does matter. When we give more it does make a difference.
But sometimes there isn’t more to give. This week I was whomped by a 6,000 mile jet lag. My body just could not readjust to time zones and it crashed. Night was day. Even though my sons really needed me, I couldn’t get my head off the pillow at the right times.
The same feeling happens to special needs parents all the time. It doesn’t matter what causes us to hit the wall, but we all do at times. Sometimes we hit it hard. Sometimes getting that head off that pillow is the hardest thing we can do. Because we know we need to smile when we are upright. We know there is no escape from the demands on us. We know that it matters a whole lot if we put the right food into our kids’ bodies, the right messages into their hearts, confidence into their stride, a fluffed-up soft pillow under their heads at night.
“It’s the same for every parent,” those of you with kids who don’t have special needs will be thinking. And yes, mostly that is true. But with a child with special needs, it’s magnified. In our home, if we are not on our game, things fall apart. If we lose the plot, our child suffers. The brain damage associated with Fetal Alcohol Syndrome demands extra parental vigilance to keep things positive. A meltdown can poison the air for a whole morning. When our son’s insecurities or tiredness rise, the symptomatic behaviors increase. Suddenly this sweet child I love more than anything is shouting rude names, I am clinging to breakable items hoping they don’t get tossed and signaling to my spouse to get the sweetest dog on the planet out of kicking range, hoping our eldest is not getting too upset by the scene as it unfolds. Our youngest son daily loses the ability to self-regulate, it’s a part of his battle with Fetal Alcohol Syndrome. When it happens, the whole world becomes a screaming, flailing mess of motion and imbalance. Today he told me when it happens he feels like there is a ‘war’ going on inside his head. That is his ‘normal’. At times.
There’s no room in our lives for my husband and I letting our bodies hit the wall. There’s no room for self doubt, self assessment. There’s no room for self pity or wishing for ‘normal’. I know there also is no room for guilt, that gnawing feeling that I’m not doing enough, that panic that we only have a few more years to truly influence his chances before he becomes in the eyes of this world an adult. I’m trying not to feel guilty that my work took me away, and that my body crashed. I’m trying not to feel insulted that the apple crumble I made to show my love was rejected, to feel inadequate that there are not clean white socks for PE, to not feel defeated that I did not know that a piece of homework was overdue. I’m trying not to feel responsible all the time. But I am. We are.
I am trying to smooth this world with my cuddles and my belief in the goodness that is inside of him, that innocent unbridled enthusiasm that shows when his eyes are all lit up with sparkles and his cheeks give way to that cheering smile. I am trying to cherish the joy and the potential, to hold onto the reality of those moments and let the others wash away as unpleasant side effects.
Nothing is routine with FASD, but there is a choice. Every day, moment by moment, we can focus on the negative or the positive. I chose the sunshine. In that light is where our child’s future can unfold.
Normal? Routine? Predictable? I may never understand how those words apply to a child with FASD. I may be inadequately responding to our child’s needs. I may be deluding myself that I can do it all (especially during a week when I cannot get my head off the pillow). Our days can be upended in a flash, but we always come back to the love. That is the constant. That is where our ‘normal’ lies – in the brilliance of his smile, in the warmth of our love. ‘Normal’ for us is a messy, incomplete, striving, hoping, tiring, chaotic never-ending series of nearly-there moments, capped by some truly rewarding moments of ‘yes’.