FROM DARKNESS TO DAWN:

HELPING OUR DAUGHTER THROUGH OCD

By Batya Ruddell

Courtesy of Hamodia Magazine

Not for reprint

     It started very slowly, like the gradual setting of the sun.  First it was the chapped hands, which appeared to be a case of eczema; then it was long drawn out showers and the strange disappearance of soap.

     At this point, the sun was still hovering, hanging by a precarious thread in the sky.  But soon mealtimes would become a daily battleground, getting dressed would turn into a grueling ordeal, and the hours-long screaming would send my head spinning into orbit.

     As the sun made its descent, throwing my world into darkness, I knew that something was terribly wrong with my child.

     Ruthie had always been a somewhat nervous child, but it had never affected her quality of life.  As a baby she had been extremely colicky and cried for nine months straight; as a toddler, anything new made her anxious, so I always explained and prepared her for any imminent changes.  When she started kindergarten, it was difficult for her to separate from me each day, but in first grade she was fine.  Shy, yes; socially, a little awkward, maybe—but she had friends.

     The changes began when she was about ten.  One day, I noticed that Ruthie’s hands were very chapped and raw.  Presuming it was eczema, I took her to a dermatologist, who prescribed creams that we spread on her hands throughout the day and night.  Nothing helped, however, because it was not eczema.  It was the beginning of an eleven-month ordeal that would turn our lives upside down.

     Then I noticed that Ruthie was taking daily showers for up to two hours at a time; it was impossible to get her out of the bathroom sooner.  At first, I thought it was just girl stuff, that she was growing more concerned about her appearance, but after a while other situations made it obvious that this was not simple matter.  Something else, something very disturbing was taking place.

     The soap in my house started to disappear.  At first I couldn’t understand why we were always running out of dish soap, shampoo, and hand soap, and then I realized that it was because my daughter, my sweet ten year old, was washing her hands constantly because she felt dirty.  In her mind she was dirty; there was no convincing her otherwise. 

    This was our introduction to a whole new world, a territory we had never expected to explore—the complicated, confusing and chaotic mind of a child with obsessive-compulsive disorder (OCD).

     Things began spiraling downward very quickly.  Ruthie refused to get on the school bus.  She wouldn’t agree to buy new shoes even though the ones she had smelled bad and were too small.  She would only wear one of the several school uniform skirts she owned.  Actually, I should say “could” rather than “would”, because she really was not in control of the thoughts causing those behaviors.  We couldn’t simply talk her out of her irrational thinking, because this debilitating, frightening and emotionally draining disease can’t be “fixed” without medical intervention.

     The day came when Ruthie could not tolerate foods on her plate touching each other; everything had to be separate.  Things escalated to the point where neither the food nor the plate could be handled by anyone except me.  She didn’t allow anyone else to sit next to her while she ate, and eventually she pretty much stopped eating altogether.  The raw pain I felt during the hours I spent alone with her in my bedroom, trying to get her to eat even one bite of food without screaming, is indescribable.

     Getting her dressed became a major ordeal; she refused to wear clothes tat had been touched by anyone or anything.  In her mind, she was dirty—and so was everything around her.  At first, my husband and I coped, but as things deteriorated, it became painstakingly clear that we all needed help.

     Two months into this disturbing behavior, we made an appointment with a psychiatrist, who within fifteen minutes diagnosed her with OCD.  She was the right shaliach because she referred us to a therapist specially trained in pediatric OCD.  We were truly grateful for that because getting to the right person can be time consuming and frustrating.  And finding a therapist who is specially trained in treating OCD, who can teach the child specific techniques for recovery, is essential.

     Once Ruthie was diagnosed, I set to work educating myself about the subject by reading books and articles, trying to ensure that she was getting the most effective treatment.

     Two types of therapy are used to treat OCD, in addition to the medication that is often required—cognitive behavioral therapy (CBT) and exposure and response prevention (ERP).  In Ruthie’s case, the therapist used both techniques, and after a month of sessions, medication was added in conjunction with therapy.  Finding the right medication was a grueling process in itself.  We tried three medications before we found one that worked.  Ruthie experienced uncomfortable side effects from the first two, and the final one, which did have positive results, caused weight gain.  Still, it was the lesser of two evils since it enabled her to function.  The problem is that it can take several weeks to determine whether a medication is working, so it sometimes has to be continued regardless of major side effects.  Finding the right one for Ruthie took about three months.

     Having a child with a mental illness affects the entire family—and we were completely consumed by it.  Ruthie is the middle of our three children, and I was spending so much time with her that my other two did not get the attention to which they were accustomed.  She was a full time job, and the situation was very hard for  her twelve year old brother and eight year old sister.  Her siblings didn’t always understand Ruthie’s behavior and sometimes became angry at her, which added to the stress.

     We decided to seek therapy for them as well so that they could express their feelings and learn about Ruthie’s condition from the therapist.  We had family session, too, which were really important because we were all so devastated.  The calm, orderly place our house had been became downright chaotic at times.  It’s interesting, however, that despite the tumultuous situation back then, my other children don’t suffer residual effects today.  On the contrary, being exposed to this disease has made them more tolerant of mental illness.

     I took Ruthie for weekly therapy sessions, and handling her daily living activities were under my jurisdiction.  Everything took so much time, especially because she wouldn’t eat properly or agree to wear certain clothes, and she was constantly washing.  Eventually, my husband changed his work schedule so he could help me get her out of the house in the mornings.

     Despite the continuous stress to which Ruthie’s condition subjected us, we couldn’t get upset with her.  It was hard, very hard, but she was suffering so much, our hearts just ached for her.  She wasn’t in control of herself; something in her brain was triggering her irrational thoughts.

     And Ruthie—maybe you’re wondering how she felt through it all.  Well, she was aware that her behavior was not normal, and we explained to her that she had an illness that was hopefully temporary and for which she’d need to take medication and go for therapy.  Although taking the medication was hard for her, she knew that there was no choice; she needed it.  By that stage, all she wanted to do was get better.

     Today, a year later, she doesn’t seem angry or resentful, and we have a normal, healthy relationship with our child.  Is she embarrassed or ashamed?  Maybe a little; she hasn’t told any of her friends about it.  And, after consulting with the therapist, we decided not to tell the school either, unless it started to interfere with her education.  Interestingly, she did manage to function out of the house, although it came out later in therapy sessions that she had secretly compensated.  For example, because she wouldn’t touch door handles, she’d kick the door open or covertly cover her hand with her sleeve before turning the knob.  She would also say things to herself, or count silently, so no one would notice.

     We were confused by the fact that Ruthie only displayed the obsessive behavior at home, but we later learned that every case of OCD is unique.  What triggers one person will not trigger another.  In Ruthie’s case, another child vomiting on the school bus had been the trigger.  It made her mind think that she was dirty, which compelled her to begin a repetition ritual, such as a counting sequence or repeating a behavior a certain number of times until it felt good.

     There came a time during Ruthie’s illness when I reached my personal breaking point.  Every night I would collapse into bed utterly exhausted, davening desperately that she would be all right.  You have to daven—not only for your child, but for the rest of the family to have strength to deal with the nisayon.  I was talking to Hashem, begging and pleading with Him, and I truly believe that after one especially difficult night, He realized that I couldn’t go on any longer.  That’s when I saw the Yad Hashem; the next day, my husband and I noticed a major turnaround.  Ruthie began to make significant, steady progress from that point on.

As her parents, we played a major role in Ruthie’s treatment, especially with the exposure and response prevention.  We were taught how to talk to her and how to work with the desensitization process.  For example, Ruthie would not go near the uniform skirt she had been wearing when the other child vomited on the bus.  Even if I had washed it a million times, she wouldn’t have worn it or even slept with it in her room.  Treating this problem with exposure therapy meant first hanging the skirt in her room so she could look at it.  Then she had to sleep with it in her room, eventually reaching the stage where she could touch it without recoiling.

            These same methods were applied with food as well.  There was one thing she still couldn’t do, though, and that was to get back on the school bus.

            We frequently asked Ruthie if her thoughts or reactions were rational or irrational.  People with OCD might ask things like “My toothbrush touched X, so is it okay if I touch it now?”  In order not to feed into her neurosis, we would turn the question around and ask her what she thought.  Answering for her would have been giving in and validating her irrational thoughts.  Also, if we saw her doing anything compulsive, we had to point it out immediately.

            Recently, Ruthie successfully completed maintenance therapy.  Once a week turned into once a month, and then her sessions were discontinued.  Together, we agreed that although she has trained her brain to think normally and has the techniques to deal with daily issues that arise, it is still better for her to stay on the medication for now and see how things go.  OCD can gradually return or not; one never knows.

            Today, I still grapple with two things.  First, there is the stigma of mental illness in our community, which can make people ashamed to reach out for help.  Although the frum community has made great strides in this area, it still isn’t enough.  My daughter’s illness was not something I felt I could easily discuss, and I only have three friends I felt comfortable enough to share it with.  I would love to see support groups in our circles; I also feel I have an obligation to help others who are going through this, especially since we had positive results with our child.

            The second issue I struggle with, of course, is shidduchim.  I know it’s still far in the future, but I worry.  And I am concerned because Ruthie is at greater risk for post-partum depression after she has a baby, IY”H.  There are times I really don’t know what to do with all these feelings…

            Sometimes when Ruthie runs into the house, bounds into the kitchen, opens the fridge and pours herself a glass of juice, I almost have to pinch myself to remember this is real.  When I hear her chattering on the phone with friends, I forget about the phone bills and break into a broad grin, saying to myself, “Let her talk for as long as she wants.”

            I have frequently heard people say that the child who gave them the most tzaros also gave them the most nachas.  I never really believed them or even thought it was possible.  But now I know it is!  I shed so many tears for Ruthie, weeping ceaselessly through worry-filled nights.  Although I shed tears today, too, they’re not the same – for when I watch her acting like a normal preteen, those tears are filled with nachas.  And the rising sun of dawn is slowly chasing away all that darkness.