Mind & Spirit

How to cope when your child has OCD

By: Jacquelyn Waller-Vintar

Author: Canadian Living

Mind & Spirit

How to cope when your child has OCD

By: Jacquelyn Waller-Vintar
When my daughter made her own graph paper in Grade 7, I thought it was because she wanted black lines instead of the standard blue. When Tessa wanted to sleep on top of her beautifully made bed, rolled in a comforter, I thought it was a smart way to save time making her bed each morning. And when she wanted to hang fabric panels in her bedroom ("It's easier than painting, and I can change it when I get tired of it," she explained), I thought I had an interior designer in the family.

What I really had was a daughter with obsessive-compulsive disorder (OCD). It wasn't the colour that was the problem with store-bought graph paper; it was the fact that the lines weren't even enough. Tessa's bed had to be perfect, at all times, so nobody could actually sleep in the bed. The colour blocking was more difficult to understand, and started us winding through the labyrinthine world of a child afflicted with OCD.

What is OCD?
OCD is perplexing, torturous and weirdly bewitching. It's an anxiety disorder, in the same group of mental problems as separation anxiety, post-traumatic stress disorder, agoraphobia and social anxiety.

We all have anxieties – how will I get this job done on time, will Phil pass his exam, is 16-year-old Erika really responsible enough to drive? These are "normal" anxieties. Worrying about poisoning our siblings or about becoming a different person if we sit in their chair are not normal anxieties.

Dr. Sandra Mendlowitz, a psychologist specializing in OCD in children at The Hospital for Sick Children in Toronto, explains the difference between typical anxiety and OCD this way: "If there were a robbery in the neighbourhood, you might worry that it could happen again, and maybe in your own home. That is a normal, generalized anxiety. Thinking that there is someone in your house, and that checking and rechecking the locks, tapping, counting and retracing your steps will prevent it from happening to you, is OCD."

Two parts to OCD
The example illustrates the two parts to the OCD equation: obsessions and compulsions. Obsessions are thoughts or impulses that get stuck. Compulsions are behaviours or rituals that follow specific rules – for example, doing something in a certain way or in a certain order or a specific number of times – that are carried out to prevent the obsession.

Where do these obsessions and compulsions come from? In his book Brain Lock (HarperCollins, 1997), Jeffrey M. Schwartz explores the links between impairments in the frontal cortex – the area responsible for executive function and memory – and the basal ganglia, which controls voluntary movement. In someone with OCD, the frontal cortex is overstimulated and fires too often and too randomly, and the basal ganglia responds with activity that some people can't control.

A very common obsession among youngsters with OCD – including Tessa – is the fear of losing a loved one, usually their mom or dad, unless certain rituals are carried out. In Tessa's case, if a parting routine of a kiss, followed by a certain spoken phrase, then three waves and a turn to the right, is not followed exactly, the whole scenario has to be repeated, correctly. If it isn't, Tessa is convinced that I will die.

Page 1 of 6 — find out about common OCD obsessions on page 2.
Hygiene is another common obsession among kids with OCD. Sara, 43, who was diagnosed with OCD as a child and prescribed mild sleeping pills, washed her hands so much they cracked and bled. "I imagined my mum was trying to poison me with the pills she gave me," she says.

Sara's anxieties date as far back as she can remember. She recalls at the age of about eight or nine, descending  barefoot to the cold basement several times a night looking for a bomb she was convinced she had planted that would obliterate her parents.

Some more OCD obsessions
Numbers and counting are also typical OCD obsessions. Sophie, now 19, has had anxieties related to numbers since she was 12. "Everything had to be an odd number for me," she says. "I couldn't get in a car if the volume of the stereo was an even number on the dial." Sophie's parents took her to a psychiatrist who diagnosed her with depression and OCD and put her on the antidepressant fluoxetine (Prozac). Today, seven years later, she has learned to control many of her compulsions but can't seem to control others no matter how hard she tries. "When a friend is giving me a lift somewhere, I still try and sneak the radio to an odd-numbered volume reading on the dial."

Laura, from Montreal, now in her early 30s, also has had an obsession with counting that dates back to her childhood. "Teachers would tell my parents that I was always daydreaming but the truth is, I was counting things in class. I would count the four sides of the classroom door over and over again. I would count the corners of the classroom ceiling or the number of desks. It always had to amount to an even number. That would go on for the whole day, every day, even though I logically knew the results of my counting."

Today, Laura takes citalopram (Celexa, another antidepressant) but it doesn't completely control her urge to count. 'At night when I'm in my bed, watching TV, I count the same objects in my room over and over again. I get lost in my counting and have to force myself out of it to be able to watch TV, only to restart again after a few minutes."

OCD and hoarding
Hoarding is yet another OCD behaviour. Remember the large squares of fabric my daughter Tessa wanted to hang on her walls? I finally discovered what they were really for: Tessa had been filling pretty boxes, gift bags and plastic bags with hair clips, dried flowers, exercise books, diaries, drawings, tags from clothing, business cards, lace, ribbon, toys, clothing and candy. She stored them in her closet and under her bed, and when every location was bursting, she started covering it with pretty material. We had tried to clean out those boxes before, but every piece was connected to some memory, and she thought if she threw out the item, she would lose the memory forever.

Tessa's behaviour – and that of Sara, Laura and Sophie – is not all that uncommon. Up to four per cent of children under 18 have OCD, leading Christopher Cameron, a psychologist with Mental Health and Addictions Services in Calgary, to claim in a recent paper that "OCD is an extremely common form of child and adolescent psychopathology."

Childhood is when OCD typically begins. It starts as early as preschool, says Dr. Michael A. Jenike, professor of psychiatry at Harvard Medical School in Boston. About one-third to one-half of adults with OCD developed the disorder in childhood.

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About 21 per cent of cases emerge before age 10, he says. There's a wave at about age seven, when kids start full days at school, with another wave at about age 12, when puberty sets in – both potential periods of upheaval. The disorder occurs at the same rate in boys and girls, with a slightly earlier onset in boys.

The earlier symptoms appear, the greater the likelihood that the disorder is inherited. Heredity is very much on Sara's mind these days; she can't help but analyze the behaviour of her five-year-old daughter. "When she was a baby, I would listen to her crying in her crib, and I would think she was experiencing the terror and emptiness I felt alone in my bed as a child."

Parents and OCD
It's difficult for parents to know if their child's behaviours are simply quirks that will pass, or signs of OCD. His or her behaviours might be age-appropriate – for example, a five-year-old's fussiness around eating, or a nine-year-old's setting and resetting a table for a perfect pretend tea party. The key here is that the behaviour fades away as the child matures out of a particular developmental stage.
Some parents might question whether a certain behaviour, like avoiding stepping on a crack on the sidewalk, is a sign of OCD or merely a passing superstition. Mendlowitz explains the differences:

"Superstitions are culturally bound, and held by a group of people; obsessions are above and beyond what is expected in your culture. If a child is thought to be engaging in excessive prayer (another common compulsion) then the family and their spiritual or religious leader would know what is excessive within their religious belief system."

Dealing with your child's rituals
Many parents unwittingly aid and abet their child's rituals. I played along with Tessa's parting ritual and bought more comforters for her bed than a set of quintuplets would need. "It's a tough situation because a parent doesn't want their child to be in distress, so they help as an altruistic reaction," says Mendlowitz. "But the helping is never enough, and it actually serves to worsen the OCD," she says. "Parental overinvolvement, even though it's meant to help alleviate anxiety, just negatively reinforces the problem," says Mendlowitz. "The child will think, If my dad goes along with it, then it must be true. If it wasn't really a problem, why would he help?"

If you suspect, as I did, that your child's anxieties are outside the realm of normal, ask your family doctor for a referral to get an assessment. You may get such an assessment at a hospital, a mental health facility, a clinic or a private office. Both physicians and psychologists can make a diagnosis. A proper assessment should include a thorough physical exam to rule out any other possible causes of the odd behaviour, and oral and written questions that both you and your child answer. You'll be asked, for example, about behaviour, mood, school, social ties and activities, as much to rule out things as to assess their role. As Mendlowitz explains, a child can be late for school because of his OCD rituals, or because he is scared of an older schoolyard bully.

To be diagnosed with OCD, either obsessive thoughts or compulsive behaviours must be present and impair daily functioning. The general rule of thumb is that if either obsessions or compulsions are consuming an hour or more each day, the child likely has OCD. When they were bad, Tessa's rituals could destroy up to eight hours of her day.

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Finding a therapist
If your child is diagnosed with OCD you may want to consider having her see a specialist – a psychologist or psychiatrist – for ongoing treatment. "And don't be afraid to ask for someone with experience in treating pediatric OCD," says Mendlowitz. "Ask about the therapist’s background and training."

If the symptoms aren't quite severe enough to qualify as the actual disorder, parents may be able to work with their child to lessen his or her anxiety. Mendlowitz recommends Freeing Your Child from Obsessive-Compulsive Disorder: A Powerful, Practical Program for Parents of Children and Adolescents (Crown, 2001), by Tamar E. Chansky, director of the Children's Center for OCD and Anxiety in Philadelphia.

For both mild and more severe cases of OCD, cognitive behavioural therapy (CBT) is the frontline treatment. In a safe environment, the child is gradually exposed to what triggers her behaviour, and is encouraged not to respond with the ritual for a progressively longer period of time. In addition, medication such as the selective serotonin reuptake inhibitors Zoloft (sertraline) and Anafranil (clomipramine) are helpful for some kids with OCD, especially if CBT is not readily available in the child's community, says Mendlowitz. If the child's OCD is severe, such medications may be necessary to "take the edge off" so thought processes are available to be worked on during therapy. Early and proper intervention is the key for a successful treatment outcome.

Support groups

Because Tessa's brother Graydon was being treated for leukemia at The Hospital for Sick Children in Toronto, and Tessa had joined a siblings with cancer support group there, she occasionally sat in on Graydon's regular meetings with a psychiatrist to talk cancer and its effects on our family. That doctor was the first to see more than depression in Tessa, and referred her for an assessment in the anxiety disorders clinic.

At age 11, Tessa attended a CBT group program with three other children diagnosed with OCD. It was an incredible 12 weeks. Tessa learned meditation, relaxation, self-talk, positive imaging and other tricks and tools that she actively practised during the program, and continued to use afterward. She really took to the group therapy format, and I think it was because she was very motivated and verbal that she didn't need medication.

Today, Tessa can sleep in her bed, even let her youngest brother climb up on it. She retains only one little box of string and crafts, poems, toys and hair clips from Grade 1, but that seems exhilaratingly normal to me!

Now 16, she's in Grade 11 at an arts high school, dances competitively, works part time, moderates a group on Facebook about clinical depression and takes a million digital photos a week, mostly of her youngest brother.

Tessa will always have OCD. It lurks in her, waiting for her to get stressed-out, overscheduled and emotionally vulnerable. When I see it start whirring up in her, I say, "Isn't that a little OCD-ish?" By that time, though, she's already working on a strategy to beat it.

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What to watch out for
Think your child has OCD? Watch for these clues.

• Excessive hand-washing or showering. Clues: more soap is being used (some children must start with a fresh bar each time they wash); more hot water being used; clean towels disappearing faster; hands appear chapped; excess amounts of toilet paper being used, resulting in clogged toilets.
• Strange idleness. Your child appears to be doing nothing, when he's really counting or retracing.
• Excessive neatness when doing homework (for example, retracing letters or words, restarting an entire page because of one error).
• More laundry (contamination compulsions require a steady supply of clean clothing).
• A newly acquired aversion to something.
• Taking longer than usual to complete everyday activities (rituals, checking, counting and retracing are time-consuming).
• Anger at your probing questions or defensiveness when you catch your daughter doing a ritual.
• Increased time alone (OCD rituals can keep your child in his room for hours).
• Somatic complaints – stomach aches, headaches, lack of sleep.

What parents can do
Here's what you can do to help.

• Set time limits on rituals.
• Give your child age-appropriate information on OCD.
• Reassure your child that OCD is not her fault; it's a problem that you're both going to try hard to fix.
• Try to be as anxiety-free as possible yourself; it's not helpful if you get angry at your child.
• Don't tell your child to ignore the obsessions – that might only increase his frustration.
• Advocate for your child by learning as much as you can about OCD in children and finding a therapist who has experience using cognitive behavioural therapy to help youngsters.
• Help your child recognize the obsessions for what they are – unwanted scary thoughts.
• Maintain family routines as much as possible – the family can be an anchor for your child.
• Praise your child's every success, no matter how small.
• Be available to talk. Take advantage of time together in the car or doing chores – situations where your child might feel less pressure.

OCD at schoool
Communication is key when it comes to school-related issues for a child with obsessive-compulsive disorder (OCD), according to Karen Robinson, president of Advocate for Appropriate Special Education. "Understanding and awareness will go a long way in helping educators address behaviours or classroom problems," she says.

Here are a few of Robinson's tips.

• Don't assume that administrators already know about OCD behaviours or the best resources to educate staff and other students. Parents should inform the school of valuable materials such as books or videos.

• Maintain a running dialogue between the school and medical professionals. Administrators should be aware of treatment recommendations from your child's therapist or doctor so any necessary accommodations can be made.

 • Encourage school officials to reduce bullying toward kids with OCD by educating students using age-appropriate material.

• Impress upon school staff that the response to disruptive behaviours should not be to exclude or punish. Discussing the problem with parents and the child’s therapist reduces disruption without harming your child’s mental health.
 - by Katie Drummond

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Resources for parents
There are many resources available for parents who have children with obsessive-compulsive disorder (OCD).

Check out these community services. 

• Your local phone book, for a community services referral number.
• A local community health centre.
The Canadian Mental Health Association. Every province and territory has at least
one office.
• Your Employee Assistance Program, if you have one at your work.

If you have a child with Obsessive-Compulsive Disorder, you might find some of these books and web sites helpful.
Brain Lock (HarperCollins, 1997) by Jeffrey M. Schwartz

Freedom from Obsessive-Compulsive Disorder: A Personalized Recovery Program for Living with Uncertainty (Berkley Trade, 2008) by Jonathan Grayson

Freeing Your Child from Obsessive-Compulsive Disorder: A Powerful, Practical Program for Parents of Children and Adolescents (Crown, 2001) by Tamar E. Chansky

Obsessive-Compulsive Disorder: Help for Children and Adolescents (O’Reilly Media, 2000) by Mitzi Waltz

OCD in Children and Adolescents: A Cognitive-Behavioral Treatment Manual (Guilford, 1998) by John S. March and Karen Mulle

What to do when your Child has Obsessive-Compulsive Disorder: Strategies and Solutions (LightHouse, 2002) by Aureen Pinto Wagner

Up and Down the Worry Hill: A Children's Book About Obsessive-Compulsive Disorder and Its Treatment (LightHouse, 2004) by Aureen Pinto Wagner

Talking Back to OCD (The Program That Helps Kids and Teens Say "No Way" – and Parents Say "Way to Go") (Guilford, 2006) by John S. March with Christine M. Benton

Dr. Sandra Mendlowitz, a psychologist specializing in obsessive compulsive disorder in children at the Hospital for Sick Children, in Toronto, is in the process of completing the guidelines for two professional treatment manuals: Step on a Crack, for children, and Lucky Charms, Little Habits, Bigger Problems: Why Can't I Just Snap Out of It? for adolescents.

Web sites to check out:
www.kidsmentalhealth.ca (specifically Ontario)

Read more:
Depression in teens
Mom's stress guide: Teens and tweens
When your child is unhappy at school

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This story was originally titled "Dancing Queen" in the September issue.


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Mind & Spirit

How to cope when your child has OCD