Coping with an SID Child

For an average child, someone else's light touch on their skin would go almost unnoticed. But for a SID child, any sensory stimulation not invited or prepared for can be overwhelming and even painful to endure.

To illustrate, Jaimie my two and a half year old daughter, sits in my lap playing her computer game while Jordhan, her ten-month old sister, stands beside us, her hands resting on my leg. Today Jaimie craves stimulation so the room is echoing with noise -- television blasting, Wiggles playing on the stereo, and her computer game beeping. Jordhan squeals with delight, watching her big sister play. Jaimie's head quickly scanning around the room every few seconds but, amazingly, she's still able to concentrate on her game. Then it happens -- Jordhan's hand slips onto Jaimie's leg.

Jordhan's light touch causes Jaimie's breathing to get more and more rapid until she's almost hyperventilating. After a moment, Jaimie sticks her face right down in Jordhan's and screeches "No touch me, Jordy. Get off!" She then pushes Jordhan, knocking her on her back.

As I try to tell Jaimie not to yell at or push Jordhan, she throws the computer mouse, runs over to the couch and lets out a long scream. She's holding her leg as if Jordhan's touch scalded her. I've learned from experience not to touch her as it only makes the situation worse. With tears in my eyes and pain in my heart, I watch Jaimie beat her head into the couch cushion repeatedly. Through Jaimie's muffled sobbing, she utters a faint "Mama...help me."

I knew something was wrong with Jaimie as early as three months into her life. While other wee ones were comforted by touching, hugs and kisses, Jaimie was the opposite. When we picked her up, she'd struggle and scream but she would calm down somewhat once she was put back down. As she grew, I noticed she angered quickly, adjusted slowly to change, startled easily, rarely smiled or laughed, and was so afraid of other people, I would spend an entire visit or shopping trip with her clinging desperately to me. A simple "hi there" from someone would send her into tears immediately. On top of this, she had terrible fits where she'd purposely hurt herself in some way (such as head banging, biting herself or other people/objects, scratching herself or pulling out her hair) until she calmed down.

When Jaimie's behaviour worsened to the point she'd be having fits for hours at a time every day, I finally decided to get her - and me - some help. I finally sought answers from Jaimie's pediatrician, Dr. Robert Moriarty. Jaimie sat on my lap facing me, wearing only her diaper, and screeching at the top of her lungs. She'd refused to let him touch her, which had made it rather difficult to carry out his examination.

"She'll grow out of this soon enough," said Dr. Moriarty. "She's just spirited."

Spirited! Just being a toddler. People used these words often to describe Jaimie's behaviour when they witnessed her fits. I found it frustrating they'd offered their opinions so freely when they had no idea what we were going through. Contrary to what people thought they were seeing on the outside, Jaimie's screaming fits weren't reactions to not getting her own way; but more an effort to communicate something was amiss in her environment she couldn't deal with.

At first, Dr. Moriarty told us spirited children are often more sensitive to their environments and just to be patient with her as her behaviour was just a "phase she'd grow out of". When her behavior worsened and her sensitivity increased, Dr. Moriarty finally agreed Jaimie needed more help than we could give her on our own.

Jaimie, I learned, is unable to cope with her external environment and to verbalize what she's feeling because she isn't sure herself - - and it scares her. Adding to her frustration is her total dislike of being held, comforted or otherwise touched. Jaimie is trapped in a constant struggle between wanting to be comforted and touched, but with her body being utterly repulsed by the sense of touch.

When Jaimie was two and a half, Dr. Moriarty directed us to an Early Intervention Program. After only one visit, an Occupational Therapist (OT) named Donna Gervais was able to diagnose Jaimie's behaviour with three words: Sensory Integration Dysfunction (SID).

Like any parent learning their child has an illness or disability, I read everything I could get my hands on about this disorder. But with terms like "Autonomic Nervous System," how is a normal everyday person supposed to understand and describe SID to other people coming into contact with their child?

"Most of us have the ability to tune things out in our environment so we aren't bombarded with sensory information," Gervais said. "We don't listen to the squeaks, creaks, bumps or other weird noises going on everywhere around us; we don't smell every stinky or nice smell in our house, and we try to focus on what is in front of us so we aren't distracted. Kids like Jaimie are incapable of this 'filtering ability'".

With this realization I knew Jaimie heard every sound; smelled every smell and saw everything because she's not able to tune anything out. Imagine how terrifying it would be to have to take in all that information but not know what to do with it! I get upset if the phone rings, my youngest daughter Jordhan is screaming, and the microwave all go off at the same time. No wonder Jaimie has such terrible breakdowns.

In my short time experiencing SID with Jaimie, I've learned five things to help keep the waters calmer...for everyone:

(1) Remember: Coping, Not Curing
The first thing parents with SID children have to realize is it will be with afflicted children for the rest of their lives. The treatments and therapy they undertake will help them learn to cope with their sensory issues in a more productive and less harmful way, but their difficulties will always be with them.
Gervais assured me these struggles are most intense during the toddler years because of the communicative limitations and not being able to recognize feelings. As these children grow, they learn coping strategies to help them both calm themselves as well as to ask for what they need to do so. For example, Jaimie is already able to use play dough time to squeeze and manipulate her frustrations out. The idea is to encourage the strategies the child comes up with to calm herself. Like going to a quiet spot, holding onto a special toy, or squeezing play dough.

(2) Listen to the Experts
Jaimie had to endure several assessments by various experts on children's mental health including OTs, mental health counselors, psychologists or psychiatrists. The purpose of these assessments is to try to determine the causes of the behaviour, the intensity of the SID, determine if there are any other roots for the behaviour, and to figure out the best treatment.

The opinion of these medical opinions can be overwhelming and not always easy to hear or absorb. The head of the Edmonton Early Intervention Program in my area, Joan McDonald (who has a 14-year-old girl with SID issues) advised me to take all the information with a grain of salt and to realize each expert has their own views based on his or her background so they look for different things.
In summary, read the reports, get the books they advise you to read, do the research, but remember, it's your child, so follow the advice that feels right.

(3) If It Doesn't Feel Right, Don't Do It
I felt guilty for having to end Jaimie's SID therapy sessions with Gervais. I actually knew after two visits it wasn't going to work out. Jaimie would seem fine during the visit but she'd "lose it" once Gervais left and end up having a complete meltdown. She'd react so badly it would take hours just to calm her down from a visit and she'd continue to be out of sorts for almost a week. Then the process would start all over again with Gervais' next visit. I kept the visits going for about three months then finally had to tell Gervais we wouldn't be able to continue. It was just too hard for Jaimie and too disruptive for the rest of us.

(4) Patience, Patience, Patience
One thing that can be quite frustrating in dealing with a SID child is that their needs can change from day-to-day or even hour-to-hour. For example, what works to help keep Jaimie calm one day won't work the next. One day her sense of smell may be in overdrive; the next, not one article of clothing you put on her will feel right to her. On top of this, most SID children are huge sticklers for routine and maintaining sameness with certain things. So it can be even more frustrating trying to keep everything calm when you have to constantly be on your toes.

It's easy to forget you're the adult sometimes when your patience is stretched to the limit. You want to just flop yourself down on the floor and scream, kick your feet and bang your head on the floor the way these children do if for no other reason than just to release some frustration.

There are days where it seems like all these children do is scream and to cry. And then you can't even hold them; to comfort them; and they can't verbalize what's going on in their heads because they don't even know themselves. I can't count how many times I've had to leave the room for a few seconds and count to ten before going back to try to talk to Jaimie. Or after trying everything under the sun to soothe her, having to put her in her room so she can try to calm herself down.

All children use us to determine how they're supposed to act and react in various situations. A SID child uses us even more so because they don't know what they're feeling. If you find it difficult to keep your cool, take a break, step back from the situation, then try again. As my wise grandmother used to say, patience is a virtue. I don't think I understood this expression fully until my Jaimie came into my life.

(5) Go Easy On Yourself
The most important thing to remember above all else is this -- it's not your fault. I have asked many "why" questions since Jaimie was born to try to figure out what caused this to happen, what I did or didn't do when I was pregnant, or what I could've done differently during delivery. But there isn't anything known to prevent this from happening. Not very assuring, I know, but there's no sense in beating ourselves up about something that we neither caused directly nor could have avoided. It simply happens.

Brian Lotanas, a psychologist specializing in preschool children with special needs stated, "Although there's a predisposition when anxiety or sensory issues are in a family, it's not always the case. It's better to not try to find a reason why these things happen but to focus instead on the excellent treatments available to help these children succeed."

The book The Out of Sync Child by Carol Stock Kranowitz lists a few possible reasons for the causes of SID but none have been made conclusive (such as genetics, loss of oxygen during delivery, etc.).

The best thing I've found is to focus on positive things that happen during the day and, really, to take it one day at a time. I've started taking things with Jaimie one hour at a time. Jaimie still has at least one "fit" every day but there are wonderful things she does in between. Being able to see these special things our children can do will help give comfort on the really bad days and have a little glimpse of good things to come.

At this stage, it's still tiring, frustrating and a daily struggle with Jaimie's SID. But I am much more hopeful now than I've ever been. Near Christmas last year, I received the best present from Jaimie I've ever had or will ever receive. She ran across the room, wrapped her tiny arms around my neck and gave me a hug -- a real hug -- and told me she loved me. She hasn't been brave enough to do it again but I hold onto that one hug, knowing what we're doing is reaching her, even if we can't always see it. It gives me hope.