Monday, 25 July 2016

Parenting isn't for sissies: Our journey through SPD

I could hear the phone ringing. Just. A persistent, high-pitched electronic jingle in the background while my four-year old daughter screamed. And screamed. And screamed. We were about 45 minutes into a ferocious tantrum and the emotional storm was showing no sign of abating.

I'd tried everything I could think of to settle her, and I could not stand another minute of it. At that point, my only clear thought was that I had to get a door and a wall between my daughter and me, for both of our sakes. I picked up her writhing, lurching little body, and unceremoniously dumped her on her backside on the interlocking sponge play mats that covered her bedroom floor, and shut the door.

As she slammed her tiny feet and enraged fists into the solid wood (thank goodness) of her bedroom door, I answered the phone. It was our neighbor. He'd recently been made redundant, and had taken to griping about our dogs barking - even reporting us to the SPCA. Naturally, the dogs were in a frenzy by now, and he’d called to complain. Then he asked: "What's going on? I can hear your child screaming." Through gritted teeth I explained that she was "fine" and was "just" throwing a tantrum. 

But she wasn’t fine – and neither was I. Anyone who's ever dealt with a colicky baby will know how close to madness a screaming baby can drive you. My daughter was almost 5 years old, and she still screamed like a child possessed. On that day, I was genuinely afraid that my neighbor would call the police, or worse, that he'd have a real reason to. 

Eventually, about two hours later, she finally fell asleep, hiccupping and sobbing jerkily even in her sleep. The next day her voice was hoarse - she'd literally screamed her voice away. 

It's not you...

My daughter's screaming fit that day wasn't unusual for her, and by the time she was diagnosed with Sensory Processing Disorder (SPD) at the age of 5, my husband and I had virtually stopped taking her anywhere at weekends. Her behaviour in public spaces was so out of control, we couldn't take her to the shops, restaurants or movies. Haircuts were a form of torture, and visits to the doctor were excruciating.

None of the tantrum tactics recommended by "experts", grandparents or friends helped at all. Distraction didn't work, neither did punishment. She wasn't soothed by music, drives in the car, cuddles or a favourite toy. She wasn't hungry or thirsty or sleep-deprived. She was just mad.

On the positive side, she was coping quite well at her new preschool. She was doing well in her "schoolwork" and was even well ahead of her peers in some areas. Her teacher was a kind, quietly spoken young woman, whose only concern was that my daughter would become inexplicably upset several times a day. 

Towards the end of that year, this teacher recommended an assessment by the school's resident Occupational Therapist (OT) for sensory integration difficulties. I'd never even heard of this, but we took her advice and had the assessment done. 

We met with the OT shortly thereafter. She explained that my daughter had Sensory Processing Disorder (SPD), a disorder where a person’s nervous system responds atypically to sensory stimuli, and that most of her behaviour problems were a direct result of this.

At that first meeting following the assessment, possibly sensing just how close to the edge I was, she took my hands in hers, looked me in the eye and said very clearly: "It's not you. You are not failing. These children are very difficult to parent." 

Finally, someone understood. 

So, what is SPD?

At the time, SPD wasn't all that well understood, but was widely believed to be a feature of other developmental conditions like ADD, ADHD or autism. More recent research suggests that it might be specific and separate neurological disorder. 

The jury is still out on how to classify it, but my non-professional opinion as a mother is that this is real and distinct syndrome. My daughter has "pure" SPD, without any other developmental issues, while my elder son has ADHD with some features of SPD tossed in. My experience is that the two conditions are profoundly different.

SPD takes a variety of forms, and my daughter struggles specifically with sensory modulation - her inner sensory "volume switch" doesn't work properly. Noises are louder, lights are brighter and textures rougher to her than to "neurotypicals" like me. She finds it very difficult to filter out distractions like background noise, and craves certain types of sensory input. Everyday situations, like a noisy classroom, can be completely overwhelming, and she finds "odd" things soothing (for instance humming, standing on her head or spinning really fast).

SPD and Anxiety

Anxiety is a hallmark of SPD. My daughter's prolonged, hysterical outbursts were not "tantrums", they were "meltdowns"- a kind of panic attack triggered by massive anxiety brought on as a result of sensory overload. (Not all kids react this violently to sensory overload - some develop little obsessions, such as lining up or colour-coding toys, while others might withdraw. 

Once we identified her meltdown "triggers", life got easier. Our OT also taught us some tactics for dealing with them. For instance, certain types of physical activities, like weight bearing exercise or jumping on a trampoline, calms my daughter's sensory system and can prevent or de-escalate a meltdown.

And life goes on...

Over time we've learned how to manage my daughter's SPD. While she will never outgrow it, coping with her behaviour and reactions is no longer the all-consuming task it once was. She's 11 years old now and doing extremely well. She plays sport, reads, takes dance classes and does well at school. 

We invested a lot in occupational therapy, and this has smoothed out many of the "kinks"in her sensory system. She has also learned to recognize when she's headed for overload, and needs to take a break so she can "re-balance". Dealing with her SPD has required a great deal of cross-disciplinary collaboration between teachers, our OT, and her Dad and I. 

She's still a bit unconventional and is inclined to get into trouble at school for acting out, but I now I see her hypersensitivity almost as a kind of superpower. She has real "spidey-senses", and is incredibly perceptive and insightful. Because she notices more, she learns more. How is that a bad thing?

To those parents out there who find their child's behaviour overwhelming and bewildering: You are not alone. There's help to be had. If you're advised to take your child for an assessment, do it. I credit our OT not just with helping my daughter learn to manage her wildly out-of-synch sensory system, but with saving our marriage and my sanity. 

There's hope, and no matter hard it is, things do get better. 

This post first appeared on "Urban Jungle Moms"

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