Twice Exceptional

If you've read some of my previous blog posts, you know that I had a tough winter. My dog had cancer.  I had three cancer scares.  My son had strep so often, he nearly needed his tonsils out.  Those cases of strep were right on the heels of swine flu, which was right on the heels of another son suffering from excruciatingly painful inflamed lymph nodes in his stomach.  Yes, it was a tough winter.  But, there was one thing that I didn't write about - something that was tougher than everything else - watching son X battle his demons.  X (I'm calling him X to protect his identity) has OCD - obsessive compulsive disorder.  OCD is a formidable enemy who can suck the joy out of parenting.  Its fingers wrap around every facet of our lives, strangling all of us.  It hurts my other children, as much as it hurts me and my husband.  One son told us that he loves hanging out at a friend’s house, "because at least everyone in his house is normal."  Ouch.

Although, OCD is "more prevalent than many other childhood disorders or illnesses" (source: kidshealth.org), it is rarely mentioned in parenting magazines or even talked about.   That's why I’ve decided to share my experience.  The first time I read a description of OCD, a wave of relief washed over me - I had a name for the menace that transformed my son from a happy kid to one tormented by routines, unable to even get out of bed in the morning without an elaborate ritual of tapping and bouncing that left him exhausted before the day even began. With knowledge, I knew I could begin to help him heal.  

OCD is usually diagnosed between the ages of seven and twelve years, however since children are often masters at hiding OCD rituals, a child may have been suffering for months or years before a diagnosis.  (One study found that it took OCD sufferers, on average, a heart-breaking nine years to receive the correct diagnosis.)  OCD often masquerades as other disorders - last year my son's teacher was convinced that he had ADHD and this is not uncommon.  The obsessions and constant rituals make it difficult, if not impossible, for a child to concentrate.  We were lucky, after six months and five therapists, we found one that we love.  She diagnosed X with OCD right away.  Looking back, it’s amazing to me that the other therapists missed it.  This underscores the fact that OCD is so easily overlooked, especially when children might not engage in noticeable repetitive behavior, such as hand washing.

 

Scientists believe that OCD tightens its grip on a child when either the flow of serotonin in the brain is blocked or, surprisingly, a child is exposed to a strep infection (25% of cases).  It often occurs in conjunction with other disorders, such as ADHD, learning disorders and trichotillomania (defined by Wikipedia as “hair loss from a patient's repetitive self-pulling of hair” – a habit we are, unfortunately, all too familiar with, but which, mercifully, has seemed to have subsided).  Similarly, OCD often goes hand in hand with giftedness – children with both are referred to as “twice exceptional” (as is any child with the yin and yang of a learning disability coexisting with giftedness).

 Discovering the term "twice exceptional", and the description that goes along with it, brought tears to my eyes.  It was so familiar (actually resonating with me for two out of my three children, but that’s another blog), that I felt as if I was reading about my own child.  My son is gifted – this is objective, he is in the gifted program in his school – yet, last year he was barely completing his work.  He has been in therapy since last spring and truly has made progress, but sometimes it seems as if we take one step forward, only to take three steps back.  A cliché, I know, but never truer than in the case of OCD. When one ritual is tackled, another often springs up in its place.  That getting out of bed routine I mentioned earlier – gone, thankfully – but of course there were others just waiting to take its place.

Last month, on the first warm day after a punishing winter, I knelt in my tiny garden and pruned away the dead branches and withered leaves that were crowding out the brave bits of green trying to push up through the hard ground.  Within weeks, verdant leaves had filled in all the sparse spots.  By trimming the dead excess away, I allowed new life to emerge in its place.  Unfortunately, OCD is the same – but, it’s not lovely foliage springing up, it’s debilitating new routines.  Prune away some old ones and new ones quickly fill in the open spot.  It is frustrating and depressing and downright scary.  When X told me he wanted to “kill the OCD with a machete,” my heart gripped in fear that he really wanted to use that machete on himself, even though he insisted that was not the case.  And yes, I know that he can’t get his hands on a machete, nor can he secure anything else to do much damage, but he is still a child.  What if we don’t conquer OCD before he is a teenager or an adult?   

I really can’t contemplate that now, because I will become so mired in my own fears, that I won’t be able to be strong for X.  I need to just encourage him to put one foot in front of the other every day and keep moving forward.  When anxiety has him in its white knuckled grip, I tell him to imagine the future – his life as a grown up.  He tells me that he wants to be an orthopedist and have four children – two boys and two girls.  He will drive a Mustang (though this changes – it was a Prius, then a Ferrari, then a hybrid crossover, the name of which I can’t recall).  He will also be a master chef and cook for his family every night.  Most importantly, he will move up the street from our house, because he “loves our neighborhood.”  When X dreams like this – big dreams for a bright future, I believe him.  I truly believe that one day all those routines will seem far away, like they happened to another person.  But, right now it is so hard to watch such a brilliant, vibrant boy crushed by fear, doubt and a prison of rituals. 

Comments

[Mandy Economos]

My daughter was diagnosed with severe OCD a year ago. She carefully disguised it for many, many years. Her obsessions ranged from a fear of Santa Claus to a fear of death. Puberty turned her obsessions into an internal nightmare fueled by sex-ed classes (don't get me wrong - I'm completely for this kind of education) describing sexual abuse, substance abuse classes that made her afraid of her parents having a glass of wine to name only a few of the most horrible triggers. She couldn't be in the same room with my husband for 6 months until her meds and therapy began to unpack this tangle in her brain. She has been in therapy for a year now and is doing much better. Middle school was a disaster for her and we have taken her out of public school and are looking for a nurturing solution. She has always been a gifted kid. She skipped 3rd grade and tests off the scale. OCD just seems to fall between the cracks. It is not categorized as a learning disorder (although it completely took over with her daily routines of check and re-checking work, writing reems and reems of tiny script to answer a one sentence question and obsessing over following procedures). It falls into the category of behavioral disorder but how do I protect her when she is grouped with kids who have been raped and abused for real? She has had suicidal depression twice because she feels her life is taken over by the illness (sometimes, not always now..... it's much better thank goodness). Thanks for sharing your story. It would be nice if our kids could meet in a hypothetical forest of OCD vines and hack them to pieces together. I wish you all the best, OCD mom in Cleveland.

[Stephanie Kepke]

Thank you so much for sharing your story! Your daughter sounds like a brave and amazing girl! Reading her story definitely brought a tear to my eye. Yes, it would be fantastic if they could get together and hack away at the vines of OCD. It is so difficult watching your child hurting, as you know. My son is still in elementary school, so we have a lot of school left. I agree that OCD often falls through the cracks and is terribly misunderstood, as well.

I'm glad that your daughter is on her way to finding a more "nurturing" school environment. Best of luck in finding the perfect solution for her. Like I said, she sounds amazing and I'm sure she will one day do great things! Good luck, and thanks again for sharing!

[D]

I was very moved by the story of your son. I have a child in the POB schools and would very much like to speak with you. My child is twice exceptional as well. Please contact me via email: [email protected]

[Stephanie Kepke]

Thank you so much for your comment! I'm so glad you were moved by my story. I sent you an e-mail on Wednesday. I'm sorry that it took a couple of days to send you the e-mail and that I haven't been able to comment on here until now. My son (the one with OCD) had surgery the day that you posted your comment. Thank you again and I look forward to hearing from you - I would, of course, love to speak with you. I am putting up another post on OCD now - this one feature's my son's story in his own voice.