Life Under The Looking Glass

Life under the looking glass

Five pairs of eyes all gawked intensely at my son who gazed around completely oblivious. In their owner’s hands lay clipboards and pens. Their masked faces only highlighted their stares. I sat holding my son, wishing my husband could be by my side in what felt like an ever-shrinking examination room. The claustrophobia was further amplified by the seven bodies crammed in like sardines in the airless room. Every cell in my body was screaming at me to grab my son and run out the door. Fight or flight was kicking in.

Just a few weeks earlier three autism specialists with clipboards had observed, analysed and tested my son. I’d dutifully answered all their questions about the pregnancy, the birth and the months postpartum, reeling off the polished speech I’d learned to refine and whittle down to a suitable length. Practice does indeed make perfect.

Carelessly I’d scheduled this appointment very close to my son’s long-awaited genetics consultation. During the 90 minute appointment mine and my husband’s family trees were drawn up and every physical or mental health problem of interest was noted down. I watched my son be stripped, physically examined from head to toe then photographed in great detail. Again I told the pregnancy, birth, postpartum story word for word. I left feeling a sense of violation. No stone had been left unturned and there had been nowhere to hide. We had been as carefully scrutinized as a sample under the microscope. I was physically and mentally drained.

“But it’s all for a good reason!” exclaimed my therapist. “Yes, I know”, I said exasperated. She didn’t get it. No matter how hard I tried to explain, I couldn’t make her understand how it feels to be asked the same questions over and over and over again, to see my child stripped, weighed and measured repeatedly and to watch him be observed by countless experts while your heart pounds out of your chest with fear. She can’t understand that I am aware the EEGs my child needs are absolutely necessary but watching him try to rip off the electrodes in a state of hysteria breaks my mama heart. I do my best to soothe my thrashing child while the technician’s look bores into me. My skin prickles in discomfort and my chest is tight. My motherly instincts are in chaos. It’s a conundrum that has become all-too familiar: wanting to protect my child from pain and discomfort but having no choice but to do the necessary for him. How do I explain that it feels like my life and my parenting are like living under a looking glass? My expectations of motherhood are now long gone, replaced by a parallel reality I vaguely knew existed but never thought would be my life.

“Did you drink or take drugs during your pregnancy?” This is not the first and neither will it be the last time a doctor asks me this.
“No”, I reply robotically, no longer taken aback by the question.

“Can your child do [insert milestone here]”
“No”.
Cue silence followed by the sound of doctor or therapist typing or writing.

“Have you been practicing [insert speech therapy, occupational therapy or physiotherapy here]?”
Squirming in seat, “well, it’s been a tough week [insert excuse here]”.

There must be masses of reports, charts and files all about my child. We have had appointments with pediatricians, neurologists, psychologists, cardiologists, radiologists, audiologists and ophthalmologists to name a few. There are lost nights of sleep worrying over these appointments. The list of things to do is as long as my arm. It feels never ending. The merry-go-round of scheduling, attending, worrying, requesting reports, chasing, cancelling, worrying some more, writing lists, crossing things off, emailing, phoning, re-scheduling and researching drains all life from me.

After these appointments I put my son in his car seat and I sit in the car feeling stunned. Our lives and my child have just been examined with a fine-tooth comb. I long to get in the shower and wash off the icky feeling the day has brought: the judgements, the comments and the stares. I long for someone to just see my son as a little human being who is doing his best every day. I long to protect my son from these appointments. I long to be seen as a mother who is just putting one foot in front of the other. I long to feel like a normal mum. I’d love to spend my time planning play dates, music classes and swimming lessons. Instead I go home and pin our new appointment to the fridge, request the hospital report or do physio with my son. I acknowledge then swallow down the bitterness in my throat and send that email or make that phone call, because that’s what we do in our lives under the looking glass: we let the waves of emotion crash over us then we get up and do it all again the next day. 

“So, tell me about the pregnancy” my son’s new speech therapist asks me just a few weeks later. I sigh internally feeling my skin tighten and thicken and I begin the well-oiled elevator pitch. Here we go again.  “And, what about the birth?” Just another day under the looking glass.


-Katie Lloyd

Katie is a mama to Kasper, who has a rare genetic disorder called DeSanto-Shinawi syndrome. You can hear her episode on the podcast HERE . where she talks about her experience with postpartum depression all while grappling with a diagnosis. She has the worlds most soothing voice - you’re going to adore her. She has the most beautiful blog called, A Very Rare Adventure where she shares her moving and deeply raw gift of writing. Follow along to keep up as she shares her perspective on being a rare mama.