As parents, the Clarks were lucky enough to have knowledge about what OCD was and how it presented when their 7-year-old started displaying symptoms. The father, Mr. Clark had been diagnosed with OCD and was managing it so they knew more than the average family did about this often-times debilitating disorder. They had heard it could be genetic and they also believed other members of the family had displayed undiagnosed OCD.
In the beginning
Early on, the Clarks had suspected something more was happening in their daughter’s brain. When she was little she was diagnosed with ADHD. Her father also had been diagnosed with this previously. She was easily distracted and couldn’t sit still. She was very intelligent and did well in school. She could get her work done very quickly but then seemed at a loss of what to do. She began to have behavioral difficulties at school. She started displaying some other non-typical behaviors that her parents became concerned about. She began to think she was allergic to certain things. She became almost convinced that she was allergic to chocolate. Her parents had allergy tests which indicated that she was not allergic to this.
She would complain about her socks not feeling right and not fitting ‘just right’. She seemed to struggle with some sensory issues. Then came the most troublesome part of their experience. She began not wanting her younger sister to touch her. Previously she had been a doting big sister, happy to play alongside her little sister. They spent a great deal of their time together. That is why this particular fear was so hard to understand. Her sister couldn’t be around her without triggering anxiety. She couldn’t have her touch her items or even be in the car with her. The toys that they used to share could no longer be shared. Her sister became the contaminant.
Mrs. Clark remembers that it really began to worsen around this time. Her daughters would be in the car together and the older daughter would anxiously roll the windows down in a desperate attempt at neutralizing whatever fear she was unable to voice. She recalls being drawn into what she now knows was accommodating behaviors. To get the older daughter to even be in the car was a huge ordeal. She would need to help her wash her hands and meticulously follow certain rules. Mrs. Clark says it was a scary time for the family. She remembers being very stressed and feeling like she had to perform things or else there would be anxiety-fueled rages.
The older daughter became increasingly more demanding. She would tell the younger daughter “Don’t move, don’t make noise.” The younger daughter who was maybe 3 years old at that time didn’t understand what was happening or why things had shifted. The slightest sound could trigger an outburst from the older daughter.
Mom was often late to work as a result of tantrums caused by OCD symptoms. Her daughter was also late to school many times. It was stressful and exhausting and as parents, the Clarks felt helpless. They knew their daughter needed help and they understood that early intervention would be best. What they hadn’t expected was just how difficult it would be to find a specialist who could treat her. Due to her age and the limited availability of OCD specialists, finding help was no easy task. However, they lucked out when an acquaintance told them about NOCD.
Starting ERP and learning new tools
Through ERP (exposure and response prevention) therapy, they realized that the older daughter was suffering from OCD. They learned tools to help the family cope with OCD. As parents, they learned how to manage the outbursts, be supportive, and not be accommodating towards the OCD. They realized that contamination-themed OCD was really a driving force behind her behaviors. This was the hardest part to tackle.
There were also some other areas that they now knew were related to OCD. Prior to OCD treatment, the family was engaged in many nighttime rituals. Everything had to be aligned just right. The night light was a huge focus of her OCD. The brightness had to be set in just the right way, often leading to endless resetting, and becoming time-consuming.
They knew the tremendous impact that untreated OCD could have on their daughter. They also knew that the beginning would be rough when beginning exposure therapy and making uncomfortable changes. However, they knew that this was the only way for their child and their family to get long-term relief. They had been in survival mode for too long. The Clarks understood that even though initially things would feel worse, ultimately it would get better. They first began trying the medication route and shifted into therapy, allowing their daughter some relief prior to asking her to do the sometimes challenging therapy. They knew that as parents, they needed tools. They believed that the medication could only carry them so far, the rest would be up to the skills of therapy.
Gradually things began to shift for the positive. More and more the siblings were able to be in the same space together and share their toys again. Things began quieting down. Having a community and support system has also been a huge part of their journey. They are Christians and had people praying for them and for their family. Mom joined a community support group that included moms of kids with special needs. This was so helpful. They would jump on calls weekly and discuss with one another how they were managing. It was helpful to see she wasn’t alone. It was important to help other parents who were struggling with behavioral issues as well as to get advice and support. As parents, they learned the importance of taking breaks. They learned to take turns, step away as needed, and let the other parent manage. Parental self-care became important.
Taking the power away from OCD
NOCD really helped the family to be more aware of their personal responses to the symptoms of OCD while supporting their daughter. Their daughter is able to understand OCD. Parent sessions alongside the child have been tremendously valuable. They have enjoyed the free NOCD app. which includes resources and tools. In particular, being able to keep track of symptoms and homework has been beneficial, and having it online has been so convenient.
The Clarks say that their advice for people who suspect their child may be struggling with OCD is: Do not wait to start treatment. If you don’t have a diagnosis yet, just keep track of all of the symptoms. Keep a journal to take to doctor’s appointments. When you are under tremendous amounts of stress you may not be able to recall all of the symptoms and information, so this helps with organization. They would also remind other parents that OCD treatment is a journey. OCD is considered chronic, so it may be around for a while, and it can be incredibly manageable. It doesn’t always need to be as exhausting and time-consuming as it may be in the beginning. Education is so important. Gather information from reliable sources.
Your child may not be able to put into words what they are experiencing or what they are afraid of. It may be more difficult feelings versus obsessions when they are young. OCD can show up in so many different forms. Remember that friends and close relatives may have misconceptions about OCD, so you may need to explain what OCD is and what it isn’t. A common misconception is that OCD is a fixation on cleaning or organizing. Rather, sometimes OCD can be thinking people will die if you don’t do something a particular way. These thoughts can feel very real to the OCD sufferer. When we educate others we just need to paint a detailed picture, to help them understand. Our family has decided that we will keep painting and hope that more and more people can understand the impact of this disorder on our children and our families.