Sensory processing disorder

One family's struggle with sensory processing disorder.

Tuesday morning, 6 a.m. I wake to the sound of my beautiful two-year-old daughter screaming. In between the pained NO’s, she manages a MOMMY! and I stumble out of bed, running to her room. Ainsley is throwing herself violently around her crib as if in a seizure. No! No! No! as I approach and then simply Mommy, Mommy! She sobs harder and I reach for her, wanting to comfort, wanting to hold my daughter and chase away her pain. Before I am able to wrap her in a basket hold, she smacks me hard across the face.

This is our awkward little dance, repeated dozens of times each week. I tell myself this is not her fault. I tell myself she cannot control this. Some mornings I choke back tears and try not to be offended, even though I feel so abused by this two-foot tornado.

These mornings come with increasing frequency now and are amplified by the fact that Ainsley has hit two years of age. But this is not simply a terrible-twos moment. This is life with a child for whom the most basic things are too loud, too bright, too fast or too tight.

Several months ago my husband, Jim, and I received a diagnosis: sensory processing disorder (SPD). The symptoms fit. Ainsley’s violent meltdowns can be triggered by a number of environmental factors. Bright sun, even bright fluorescents cause her to scream horribly. We keep her room pitch-black at nap time, towels over the windows. Our living room drapes are often pulled shut. Ainsley wears special sunglasses almost everywhere and now requests them: “Too bright! Where’s my glasses?”

If Ainsley’s clothes are anything but 100 percent cotton, she’ll be aggravated and itchy all day. Meltdowns are guaranteed if her clothes aren’t washed in Ivory Snow. Tags must be removed and pyjamas turned inside out because the seams bother her. Fabric softener residue on her clothing makes her scratch until she bleeds.

The child psychologist we work with to help manage Ainsley’s behaviour calls it a regulatory issue. Ainsley’s brain has trouble processing input from her senses and that causes a neurological traffic jam that ends up looking like a violent, raging tantrum. She can’t control how she responds to her environment.

The beginning

We were experienced parents of three-year-old Payton when we applied to adopt again. Payton was a beautiful, bright, engaging baby of six weeks when she was first placed in our arms. She was very social, loved other kids and enjoyed Gymboree and Books for Babies. It wasn’t long before she began asking for a brother or sister. Adopting Payton was the single greatest experience we’d ever undertaken. How could we not want to duplicate that?

We met Ainsley at the Children’s Aid office in London, Ont., when she was five months old. She’d known me all of five minutes when she fell asleep in my arms. From the moment I first held her, I knew she trusted me and, more importantly, I knew she needed us. As hard as it is to parent Ainsley, there was never any question she was meant to be part of our family.

Bionic ears

Ainsley has the manic energy of a child with ADHD (attention deficit hyperactivity disorder), which is on the same spectrum as, and often confused with, SPD. Most of the experts we have enlisted to help our daughter agree that if we had waited until Ainsley hit school age to get help for her, she would have been misdiagnosed with ADHD and probably placed immediately on Ritalin. In a lot of ways, I suppose we were fortunate: Ainsley provided us with enough clues that something was wrong before she even celebrated her first birthday.

From the time she arrived in our house, she would cringe and scream if the vacuum cleaner was running. She still runs and hides when she sees someone wearing a hat on television. Captain Feathersword of The Wiggles is horrifying. And then there are the toilets, particularly public toilets. The sound of those loud, whooshing automatic flushers is physically painful for Ainsley. Try being trapped inside a bathroom stall with a kindergartner, a cartful of groceries and a screaming, terrified two-year-old, tears streaming down her face, hands clasped tight over her ears, who’s hollering, “Too loud, too loud,” and refusing to budge.

Ainsley’s paediatrician, Fabian Gorodzinsky, describes it best: “Her brain is like a giant microphone.” Indeed, Ainsley hears noises the rest of us tune out all day long. Bionic ears, I joke with my husband. The slightest noise outside her room during the night causes her to bolt upright. This can go on 10 times a night, which is why we play a CD of classical music from dusk till dawn in Ainsley’s bedroom.

Tics and tantrums

Despite her own sensitivity to sound, Ainsley is always the loudest person in the room. She has no volume control. She races through her day and completely lacks any sense of danger. Until we triple-locked all the doors in our house, Ainsley would often try to scoot right out the front door and onto our busy roadway.

Ainsley’s tolerance for pain is high. Once, after warning my daughter several times not to touch the carpet roses in the garden, I looked up from weeding to see her fist clenched around a stem full of thorns, blood dripping down her arm as she smiled: “Pretty flowers, Mama!” She had no idea she was hurt.

Some estimates indicate as many as one in 20 children may suffer from SPD. There are a few theories about the disorder. Some psychologists have documented high numbers of children from Eastern European orphanages with the condition — lack of stimulation in early months of life being one suspected contributor. Premature babies and those who sustained trauma during birth can be at greater risk. Many children born with autism and fetal alcohol spectrum disorders have the same sensory processing deficits. Similarly, children exposed to drugs in utero are at higher risk. In Ainsley’s case, her biological mother was a drug addict: Ainsley went through the trauma of drug withdrawal when she was only a few days old.

Whatever works

When Ainsley is fully engulfed in a tantrum, she cannot lift herself out. The typical parenting tools of distracting, redirecting and even ignoring have never been successful with Ainsley. While time outs and Magic 1, 2, 3 worked like a charm with Payton, these tools only amplify Ainsley’s anguish. Some things that have worked may sound strange: the distraction of a doorbell ringing; the noise of a cowbell bought at the dollar store; deep breathing. When those tactics don’t work, we give her a toy and tell her to blow it across the room. And lately we all make monster faces together, clenching and unclenching our facial muscles and hands, sometimes laughing in the process. It is a small tool list, but it’s growing.

Meanwhile, we have taken to heart the advice of Ainsley’s doctor, who says that successful treatment begins by modifying her surroundings: “It’s not your child. It’s the environment.”

So we cling desperately to sunglasses and floppy hats when it’s bright. We shun fluorescent lights and avoid public bathrooms and strange new situations. Preparing for a big change, such as starting a new preschool, takes months: First we tell her what we are going to be doing, then we show her pictures. We visit the place together for short periods, gradually increasing her exposure and reminding her she is safe. And when this still isn’t enough, we consult the experts.

Getting help

It was difficult to find an occupational therapist: Demand typically exceeds the number of available therapists and many considered our daughter too young to benefit.

But eventually we succeeded. Now, every Monday, Kim arrives at our house with new tools and exercises designed to calm some of Ainsley’s overactive senses and stimulate the under-responsive ones. Those in the know call it a sensory diet. A weighted blanket placed across both of our laps helps Ainsley concentrate long enough to read a book; the deep pressure sensation helps organize her disorganized sense of touch. We also use the blanket at night; without it, she wanders aimlessly through the house.

Theraputty, a thicker, more elastic kind of playdough, gets her using her muscles while also stimulating the sense of touch. A regular routine of brushing her clothed body with a surgical scrub brush every 90 minutes throughout the day, followed by joint compressions, calms and helps moderate her responses to touch. A child’s trampoline in the basement helps Ainsley satisfy her need to jump. Some of these solutions might seem counterintuitive, but they work.

Family life

SPD doesn’t occur in a vacuum. It affects our whole family. On days when Ainsley has a lot of meltdowns, we have to change our routine, cancelling family visits or playdates. There are many days when Payton is the target of Ainsley’s aggression. Having a sibling who is so intense is not easy. Recently Payton has started play therapy to help her cope.

We hope Ainsley will learn to adapt and implement her own strategies to avoid some of the traffic jams in her brain. I try to picture our family several years down the road. But it’s mighty hard to think of time travel when my beautiful brown-eyed girl wakes up hitting, kicking and screaming. So I fold her in my arms, facing out, hold her with all my strength, and sit with her inside a dark room, singing quietly. A lullaby. A nursery rhyme. The national anthem. The alphabet. Working my way through the entire repertoire one by one. Hoping something sticks.

What to do if you suspect your child might have sensory processing disorder:

Do your own research A helpful website: sensory-processing-disorder.com.

Speak to your family doctor Discuss your concerns and ask for referrals to a paediatrician and an occupational therapist.

Search for resources Contact a local children’s mental health organization or a children’s rehabilitation centre. Early intervention is the key to helping families and children succeed. Don’t be concerned about contacting the wrong organization. Once you make that initial call, an intake specialist can direct you to the proper person or organization.

Explore treatment options Ask yourself what other services your child might require and pursue them actively. For example, Ainsley has seen a geneticist to rule out other conditions. Would a speech therapist or physiotherapist benefit your child?

Trust your gut As a parent, you know your child best.

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