Madison has been diagnosed as one of the half a million children in the US that suffer from OCD (obsessive compulsive disorder). We know that many people reading this are used to thinking of OCD as the punchline to a handful of bad jokes, but it's so much more than that. OCD is an anxiety disorder that consists of obsessions and compulsions. Obsessions are unwanted ideas, thoughts, images or urges that are unpleasant and may cause worry, guilt or shame. Compulsions, also called rituals, are behaviors a child feels he or she must perform repeatedly to reduce the upsetting feelings or prevent something bad from happening. To be diagnosed with OCD, these behaviors must be time-consuming and interfere with the child’s daily life.
Affected children may have worries about germs, getting sick, dying, bad things happening, or doing something wrong. Feelings that things have to be “just right” are common in children. Some children have very disturbing thoughts or images of hurting others, or improper thoughts or images of sex.
There are many different rituals such as washing and cleaning, repeating actions until they are just right, starting things over again, doing things evenly, erasing, rewriting, asking the same question over and over again, confessing or apologizing, saying lucky words or numbers, checking, touching, tapping, counting, praying, ordering, arranging and hoarding.
Madison has triggers - some of which will literally incapacitate her. In Maddie's case, triggers come in many forms. It can be words, smells, sounds, textures, or thoughts that start the journey into the rabit hole of OCD related fears. One of Maddie's triggers is the idea of vomiting. She guides her life around preventing this from happening to her or to people around her. No overeating. Don't finish your plate. No new foods. Sit far away from the trashcan. No carnival rides. No boats. No train rides. Don't say vomit. Or puke. Or Upchuck, because then you're asking for it. And if someone does feel sick, there is a list of rituals to prevent the contamination from spreading. This is only one example. She suffers from multiple OCD subtypes, each with its own pressures in her thoughts and its own "rules" she feels she must follow.
Unfortunatly, these rituals leave very little down-time in the brain. Most sufferers can't read a book without coming across a trigger word. They can't study or interact in a social setting. They can't even sleep because they need to review their checklist of the rituals keeping they safe every night.
In short, OCD, makes it's victim's world very, very small. Her parents have taken her to therapy most nights of the week, attended group therapy for weeks at a time, and enrolled her in OT and equine therapy. Although these things have both lifted her away from the suicidal plans that nearly took her last year and kept her out of crisis, they have done little to address the underlying cause of her anxiety and major depressive disorder: her OCD. Her level of impairment is considered severe in that nearly all of her behaviors are affected by the illness. It's hard to get better from a disease that tricks the brain into thinking it's keeping you safe. And when you have been ill a long time, it's hard to imagine life on the other side of wellness. What is there if you're not consumed with your intrusive thoughts?
Fortunately, there is hope. With the level of severity, the only way to handle her OCD is with intensive daily treatment, which is not available close to home (believe me, if it were, they'd have found it). So, Madison is currently enrolled in a program in Tampa Bay, Florida, at Rogers Behavioral Health, which was recommended by multiple members of her care team. This program is designed specifically to help young adults and children conquer OCD. Maddie has been making progress over the past few months at the clinic, using exposure and response prevention (ERP) therapy. Through this specialized therapy, people with OCD can learn that that they are in charge, not OCD. They can learn to do the opposite of what the OCD tells them to do, by facing their fears slowly in small steps (exposure), without giving in to the rituals (response prevention). ERP helps them find out that their fears don’t come true, and that they can habituate or get used to the scary feeling, just like they might get used to cold water in the swimming pool. In short, ERP, when done in an appropriate setting by skilled staff, can give people their lives back.
We are optimistic! She has made tremendous gains and is finally beginning to express positive emotions. We are still walking uphill...but we are walking each day.
Maddie is making progress, but we don't have a time frame on when she'll be ready to return to her life in Ohio. In the meantime, her parents' insurance is treating this as out-of-network care and the bills are piling up. It costs over 700 dollars a week for just the treatment. Relocating half the family to Florida has been even more expensive. There have been flights back home for exposures, flights for Dad to be involved with care, flights to get her brother started in college, gas for the two-hour round trip daily drive, and general needs in caring for Maddie's 8 and 2-year-old sisters, who make the daily trek with mom. The savings was drained over a month ago, and now the credit cards are getting close to full. They will be relocating to different housing in August, which will be an additional expense. Her mother will be taking unpaid leave from work in the fall until Madison comes home and can successfully transition back into school.
Maddie is getting the treatment she needs and that remains the priority. Everyone is committed to helping her learn and grow into the best person she can possibly be! We love our Madison and believe she can and will learn to manage this debilitating condition and go on to help others who also suffer. This GoFundMe is dedicated to keeping her mental health a priority. Anything helps.
- Cynthia Mitch
- Terri Davis
- Mara Robinson
Organizer and beneficiary
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