All week on the blog, we’ve been sharing different voices of advocacy for OCD Awareness Week. Today’s voice is that of Cathy, a mother of a young woman with OCD. Cathy wanted to tell her story in case it helps other families going through these same challenges, and I wanted to share this story because it so perfectly illustrates why we need your help to develop more resources and programs to support children and families with OCD.
It started one morning in second grade. She couldn’t walk into the school, absolutely refused. I didn’t understand why and she couldn’t tell me why. I enforced it; she had to go to school. That’s when the rages started. The school said she needed to see a doctor and wanted to know, “What’s happening at home?”
Our primary care doctor said that behavior management at home or maybe a group home would solve the problem. I tried desperately to find a therapist who could give me an answer. After a referral to a neurologist followed by three therapists, a hospitalization, and a cocktail of useless medications later, we still had no real diagnosis other than: bad parenting, maybe ADHD, maybe mood disorder, maybe childhood schizophrenia and even maybe your husband sexually abused her!
I stayed up nights surfing the Internet looking for answers. Katie was tapping and touching everything 4 times. Mom, what is 4×4, 4×16, 4×64, and 4×256? I suspected OCD but really didn’t understand it. Every “professional” whom we saw said, “No, this is not what OCD looks likes.” As Katie’s rages continued to worsen, I finally came across a research study online for treatment for OCD.
I signed up immediately and we went to the interview (I had to bribe my daughter to go, she was tired of being labeled a bad kid). After a 3-hour evaluation Katie was diagnosed with severe OCD. She did not want to go home—she wanted to start the treatment immediately. At last, someone understood her!
We spent the next 12 weeks in outpatient treatment. Katie’s affect was improving! She was so successful in treatment, in fact, that we could not continue counseling there. I was scared, where would we go now? I begged for referrals only to hear they did not accept our insurance or had no openings. When we finally found someone that could see her, we had to wait two months. Our new therapist was the best, as she listened to us, respected us, spent time with us (sometimes up to 1 ½ hours!). She asked us what we needed. We spent the next five years with her until she moved out of state. Where would we go now? Katie was 16 years old. No one had openings for adolescents or had experience in treating OCD in teens. Katie became depressed and angry and refused to go to school. We cycled through 3 different providers, settling on one who didn’t treat OCD but was able to help Katie survive adolescence.
We know now that exposure and response prevention (ERP) therapy is the most effective treatment for OCD. One therapist we found stated that she knew how to treat OCD, yet after 4-5 weeks of therapy when Katie asked her if she could help her with ERP, the therapist (sarcastically) told her that ERP was an experiment she could try at home. Katie never went back to see her, so again we are in search of another provider.
For many years we have attended the IOCDF’s Annual OCD Conference every year, which has become our family’s lifesaver, allowing Katie and, indeed, our whole family to connect with others with similar experiences. This past summer in Boston, we saw in the Program Guide the name of a therapist who both resides near Katie’s college and is trained in ERP. Our attempts to track her down and connect at the conference were unsuccessful. Fortunately, Katie called her a week later and she said, “Mom, she is so easy to talk to!” Of course, she has no openings and doesn’t take our insurance…but to our surprise, this new therapist took the initiative to talk to Katie’s college counseling center and find someone who was able to see Katie on campus that can treat her
Not a week goes by that we don’t hear a heartbreaking story like Cathy’s. These stories tell of kids who are frightened and paralyzed by their OCD symptoms and their parents who are left distraught from not finding help for the child that they have been given to protect and nurture. This is especially true when they seek help from the one person who is supposed to know all of the answers—their pediatrician.
Through programs such as the Pediatric Outreach Program, the International OCD Foundation is working tirelessly to change this by working with pediatricians to develop diagnostic and assessment tools to make sure family physicians know how to spot OCD in children and know where to refer patients for effective treatment.
This month, the International OCD Foundation is asking for your help to support the Pediatric Campaign for Hope, to raise money for programs to help support parents and children like Cathy and Katie. Thanks to the generosity of a donor, we are able to match all donations made by October 31, 2015, which means your gift will have double the impact.
I hope that Cathy’s story has inspired you to help the IOCDF provide HOPE for kids like Katie who struggle to find the proper treatment yet persevere through oftentimes overwhelming frustration. Earlier OCD symptom detection and diagnosis within the pediatric community allows children and their parents to find appropriate treatment sooner. If you are inspired to support the IOCDF’s efforts to increase awareness in the pediatric community, please click here to donate and become part of the Pediatric Campaign 4 Hope. Remember, thanks to our generous donor, your gift will be matched, dollar-to-dollar! Together, we can change the way those who are responsible for caring for our children view OCD and related disorders.