Thursday, October 7, 2010

Guiding a child through hereditary illness

This post isn't so much a how-to as a vision of what the future might ideally be for Mikko and me. I started writing this post in February, if that gives you a sense of the amount of time I needed to process it and write it in a way that was comfortable for me. I can only hope the time it spent marinating has been beneficial rather than degrading.

I need to start with a confession, something I don't often speak of aloud — both because I think people will not understand (historically, when I have tried to speak of it, they haven't), and because I don't think I am anywhere near the official voice for this subject. And that subject would be mental health: my own, and my child's.

I have what I would term a mild case of obsessive compulsive disorder. I grew up knowing the way I thought was different from the way other people thought. I knew, for instance, that most people probably didn't think about how a particular part of their foot had contacted a crack in the sidewalk and would then make sure the same part of the other foot contacted the next crack. And then continued with a different part of the first foot, then that same part in the second foot. And then reversed the whole order, starting with the second foot first and doing the pattern, just to even it all up. And, if the "wrong" part of the foot contacted the crack, it had to be repeated, but now with that part incorporated into the pattern. And, for good measure, it was best to do it all again, starting with the second foot this time. Then there were all the fears of hurting other people, hurting myself. The way I'd make myself carsick reading and rereading signs we passed in a precise way. The need for certain things to be in perfect order while the rest of my belongings were in chaos. The overwhelming guilt I felt when it was time to part with an object I no longer needed. I knew all that was, well, crazy, but I never told anyone about it because — well, it was crazy.

It wasn't until college that I found out what I had had a name, and that I wasn't actually as bad off as I'd feared. It was both a relief and a stigma — someone else has this same problem, but, yes, it is bizarre enough to end up in my roommate's abnormal psych textbook. When a serious and long-term boyfriend then split up with me, citing as his reason that I was too much work for him, I figured this was somehow the root cause: that I was a freak who couldn't, apparently, sustain long-term relationships.

Slowly, though, it began to dawn on me. It started with really listening to the stories my parents told about my childhood: how I'd had to have the blankets just so under my chin, both hands holding an equidistance apart, and that they'd try to memorize exactly how it went but it was no use — I had to feel that it was right. They also used to laugh as they recounted how I would never sit in a sandbox but would squat awkwardly and would dust my hands off every couple seconds. They reminded me how I insisted on arranging my books in alphabetical order, but that I'd needed help since I couldn't yet do it on my own.

It moved on to really observing my own mother in action, and listening to her laughing comments about herself. She would point out in a singsongy joking voice that she had to have precisely six crackers for lunch, and they had to be arranged in a certain shape, and she had to eat them in a certain order.

And I realized: Not only did my parents know there was something "wrong" with me, they knew because my mom was the same way! There was no need for me to have suffered in silence all those years as a child. In fact, there was no need for me to have suffered at all.

I look at Mikko now. He has very specific notions of order. Beyond that, he has sensory issues with anything wet, dirty, or what he perceives as wet or dirty. His face can be happily covered in ice cream, but if one imaginary fleck of water gets on the cuff of his sleeve, he has to change his shirt immediately. He's always the one at preschool who hangs back from the messy activities. When I go to pick him up, I see the other children absolutely covered in paint or other goop, and my child is the one who is relatively untouched.

I don't know how he senses the world, not yet, but I catch glimpses that remind me, strongly, of myself, and of my mother.

Here is somewhat humorous video proof:

There are two segments to the video, and both were taken last year, when Mikko was 2.

So far, Mikko doesn't strike me as any "worse" off than my mother or I am. But it does make me wonder what's going on in his brain, what he will try to process as he grows — and what he will feel ashamed and confused enough to hide.

Here's where I break in and admit I have no idea where to shoehorn in some thoughts I've had since February, when starting this post. Possibly they belong in a footnote, but it would be a monster of a footnote, so I'll just stick them here, where we can all trip over them.

I share my story of self-diagnosis of OCD not to garner sympathy or to suggest that I know in a meaningful way what it is to struggle with other mental illnesses. I don't. I don't even know what it is to struggle with a severe form of OCD. I have been able to control it myself in a way that's acceptable to me, without therapy or drugs, but I don't condemn anyone who seeks other routes and outside help, and I would steer Mikko in that direction if I sensed it would be helpful.

I also don't share my story to have people second-guess me or give what they think is a reassuring response of "Well, aren't we all a little obsessive-compulsive?" Because, no, I don't think we are all obsessive-compulsive to the degree that I am. I truly believe my brain is ordered differently from others', and I could convince you of it if you wanted to sit around and let me list out the hundreds of ways I work through obsessions and compulsions in a typical day, but I don't want to get sidetracked here. (Obviously, if you do have OCD, you're free to share; I just get tired of the implication that, just because other people can't see my illness, since I hide it so well, that it's not there.)

I think, too, that OCD has been glamorized (for want of a better word) by shows like Monk and movies like As Good As It Gets, to the point that people now see OCD only as an extreme form of fastidiousness, and maybe something of a personality disorder. But, seriously, and, again, I won't go into this all here, there is a lot more funkiness to it than that.

Sorry for the detour, and back to my point, which is to ruminate on this question: What's a parent's responsibility when she sees a hereditary illness in her child?

I think of those years growing up, feeling alone and crazy and other, and I think the very first thing (and last thing and middle thing) I want to do is to talk about it with Mikko.

I want to ask him, when I see him precisely ordering something or repeating a pattern, how it feels when he does it, and how it feels when he doesn't.

I want to ask him what his fears are, what his thoughts are about his own mental health, what he wishes he could change, and what he's happy with.

If it turns out he has the same illness as I do, I want to share my own story. And I want that story to give him hope, as my own resolve gave me confidence to change my behaviors. It was in junior high that I first realized I had control over my thoughts: that I could stop some of the little voices that pestered me by simply, and graciously, refusing to let them get at me. It was more liberating than I can describe, that first act of mastery over my own mind.

It was many years later that I realized I could apply that mastery to other compulsions and simply refuse to carry them out. That is, if I'm walking down the sidewalk and becoming frustrated by my carefully orchestrated walking on cracks, I can become conscious of the disorder in my mind and deliberately tell myself, "You don't need to do that." At that point, I am free — either to continue the pattern or not, but of my own choice. It doesn't always work; it doesn't always work the first time, for sure. But it has been very helpful for me. I would share that tool with Mikko, if he wanted it and was prepared to receive it. I found out, incidentally, that behavior modification to halt the compulsions is one of the primary treatment methods of OCD, which is one reason I feel I'm already instinctually handling this the best way there is to handle it. I'd be happy to pass along the technique and the change in mindset, if they're useful.

I think, too, I want to be vigilant for further signs of mental distress. I want to make sure Mikko doesn't feel the need to go it alone, if any mental problems threaten to swamp him. Just because I self-diagnosed and self-treated doesn't mean he has to, and I want to make sure he always has the support he needs.

Finally, I want to make it clear that people with mental illness are still people. We're still nuanced, and valuable, and productive. We're not a joke or a scary story. It's all right to have something wrong with your brain; a lot of us do.

That's where I'm at now, in these very early stages of suspecting mild OCD in my son but not for certain knowing. I want to be prepared, though. I want to do more than tell him funny stories and show him that video when he gets older. I want him to know he's not alone, that I've been there too, and that we'll get through this together.

What are your thoughts on guiding a child through a hereditary illness, whether physical or emotional/mental?


Christine Wang said...

thank you for your honesty and sharing your story. i think this is when the blog world truly shines...when people open up, share their lives and experiences with others, and garner inspiration and hope.

M said...

I applaud you for planning to discuss this with your son. IMO, communication is VITAL to 1) handling of the illness/disorder and 2) to a child's self-esteem. You illustrated both with your personal story.

We are handling similar issues in our home. Our son has been tentatively diagnosed with an autism spectrum disorder and my husband has Aspergers, so we feel pretty confident that eventually our son will have the same diagnosis (he's a toddler, so too young to tell if it's Aspergers). The similarities in their behavior is stunning.

Our son is young for it now, but we plan to have conversations about it with him as he gets older and expresses an interest. We want him to feel comfortable with who he is and see the benefits of having whatever it is that he has.

I also have a hereditary genetic illness. My son didn't inherit it, but I'm pregnant again and this child has a 50% chance of doing so. I bought an ABC/I Spy children's book that our foundation wrote for my kids to have. My illness shouldn't be a secret to them, regardless if neither of them is affected or not. I'm hoping the book will help explain it to them in an age-appropriate way when they are ready and let them know the door is always open to ask questions about it.

And really, even if the illness ISN'T hereditary, I think these same principals still apply. A dear friend of mine had her illness concealed from her by her parents until adulthood. It caused a lot of hurt that could have been avoided if she'd known growing up and there had been open communication about it between her and her parents.

Anonymous said...

I am a very anxious person. As an adult, I went through some therapy and learned a lot of coping mechanisms.

Sometimes, I see the anxiety in my 5-year-old. At this point, she's too young to learn the same techniques that I use. But I do try to relate to her on her level, and give her SOMETHING to help. I want her to know that she's not alone, and that I am here to help her through whatever it is that she's concerned about. It's the best I can offer right now.

Kat said...

I agree that talking with your child is the best place to start. They need to know that they are not alone and that you are there to help if they need it. When they are older they will also already have a sense of "identity" and it will make things easier.

Thanks for sharing your story!

Michelle @ The Parent Vortex said...

I inherited my dad's tendencies towards anxiety and depression, my brother inherited insomnia and strange sleep patterns from my mom. That's genetics - we pass on both our strengths and challenges to our biological children. But knowing how and when to share our experiences dealing with those challenges can be very helpful.

My dad went to a counsellor when I was a kid, maybe 8 or 9 years old. I don't remember much of my dad's behaviour at that time, but when I was a teenager and young adult he talked about it a little, and shared how Cognitive Behavioural Therapy helped him evaluate his thought patterns. I was really interested, and went on to do a psychology degree. Knowing I have that tendency and developing some strategies to keep tabs on it has helped a lot. If I notice either of my kids showing similar tendencies, I'd definitely want to share my experience.

Carla Schmidt Holloway said...

I read a book called Kissing Doorknobs in high school, and I was absolutely convinced that I was OCD. As an adult (talking with my husband about what he was learning for his Psychology degree) I have a feeling I actually have a mild case of OCPD.

Because in all reality, my obsessive thoughts weren't terribly distressing (even though I did imagine horrible things happening to my loved ones, etc), and when I had compulsions, I didn't "need" to perform them to feel safe and secure. Alphabetizing books and movies and organizing M&M's by color was actually pleasant and therapeutic for me. I know now that's not OCD. Things I don't have control over are that icky feeling if I'm wearing clothes that are wet AT ALL, the fact that I'm still afraid of the dark, and the weird personality things that got in the way of making friends in school.

I think too many people make a joke of OCD, where everybody laughingly says "I'm so OCD!" and they can't see that for some people it's not a quirky idiosyncrasy, it's a hellish life where you feel trapped by your own mind.

Momma Jorje said...

Wow. Thanks so much for sharing this! My mother and oldest daughter (20yo) all three exhibit mild OCD and are aware of it. It is *very* mild. My doctor told me that it was no real concern, so long as I could use it to my advantage (at work, for example) and it didn't have a negative impact on my life.

I did very similar sidewalk crack walks as a child, but I didn't feel different because of it. I think everyone feels different and alone in some way or another through adolescence. I obsessively counted trains. I couldn't see a train without NEEDing to count it! That was fine, until I was driving down the highway alongside of one. Thankfully, I have more self control (in much the way you do) these days. And honestly, I find that the happier I am in my life, the less I need such things.

My ex-husband once messed me up counting a train, on purpose. It was a hateful thing to do and literally had a long lasting effect on our relationship. It isn't what caused the divorce, mind you, but it didn't help! He didn't understand.

My current husband is mildly OCD as well. It was interesting merging my life with him, seeing the areas in which we are each OCD. I had not (previously) been concerned about OCD behavior in my children, though I believe my oldest is a hoarder. Thanks for the concern! ;-)

However! I went through a heavy depression in my early 30s. I was ashamed of it, too. When I finally mentioned it to my mother, she confessed she, too, had gone through depression in her early teens and again in her 30s. O.M.G. This would have been REALLY good to know, as my then-teenaged daughter (whom my mother adopted as a baby) was suicidal!

I'm sorry to ramble on in your comments section. I really just wanted to say "here, here!" on the topic of being open with our children about mental health, including our own since they're at least somewhat likely to inherit it!

Momma Jorje said...

Oh, also meant to say that your video is AMAZING to me! Absolutely fascinating! Even without sound.

and the 3rd person I meant to mention was ME!

lauren. said...

girl, you are strong. & brave. & i am always amazed at your open honesty. i love, too, how willing you are to let mikko's path to healing be different from yours - too many people want to push their own ways on their kids.

you're such an inspiration. thank you.

& p.s. [on a TOTALLY unrelated note] you & your boys should definitely look into this: i think you would all love it.

dohiyi mama said...

Carla - I agree, it's so very irritating how people who have no idea about OCD are so cavalier about it. I have a brother who just turned 18 and is just starting to get his life back together. When he was 16, his OCD surfaced and his entire life fell apart for two years. He just couldn't do anything. :( He went through a germ phase, a spider phase, and many, many other obsessions. It was awful to watch.

Lisa C said...

Wow, Lauren, thanks for being so honest. It's hard to talk about mental illness. I have anxiety/depression issues, and have been learning to handle those since college. I'm grateful that so far I can't see my tendencies in my least not the ones I'm really worried about.

I do have to say, and I don't mean to lessen your condition at all (because I do know of it's seriousness and agony), that I think many people do have a tad bit of these tendencies...but not to an extent that it becomes a problem. Same thing with depression/anxiety. Everyone experiences those feelings to a certain extent, but not at a clinical level. I remember as a child feeling the need to mouth certain letter sounds over and over again and it was really annoying. I wanted to stop but couldn't just stop when I wanted to. If OCD is anything like that, then it's gotta be miserable.

I think little children naturally tend to repeat things over and over or focus in on some little thing that needs to be a certain there might not be anything wrong with him. But it's good that you are paying attention.

Have you considered talking with a child psychologist? Perhaps you can get a better idea of what to look for or how to talk to him about it if you determine that he does have it. Perhaps it's the sort of thing where early intervention can really help.

Good luck. I hope he doesn't have it.

Sybil Runs Things said...

What an honest, lovely view of of this psychological disorder.

It is my opinion that the best thing a child with a disorder can have is a parent who has also gone through it. Matt has OCD, I have anxiety, our poor kiddos are doomed. Iris has already been to a therapist for her anxiety. Eloise, so far, shows no signs of anything.

I don't think it's a bad idea to try therapy if you think your son's disorder are getting in the way of just being a kid. I have a rec for who you *shouldn't* see ;)

You're such an amazing mama. Your kids are lucky to have you!

Jenny said...

My husband and I realized, while in counseling for something else, that I have OCD. It was causing small problems between us--arguments over cleaning and organizing, mostly--but what's worse is that it caused me so much distress during my first few weeks postpartum with my firstborn. The aspect of OCD which is not so commonly referenced as the quirky compulsion is the intrusive thought. I had terribly disturbing thoughts about harm coming to my baby until I was frequently afraid for my husband to leave for work, and (despite having a psych degree) I didn't immediately put two and two together that this was not JUST postpartum depression. While I was still pregnant with #2, our counselor told me to buy the OCD Workbook, and it was a huge help. I didn't nearly finish it, but I also consider myself to have a mild case and just reading accounts that were almost identical to what I'd experienced and the tips for dealing with them was enough. I can now stop myself (kind of like you said), say "this is just one of those silly OCD thoughts," and move on with my day.

I haven't yet noticed any signs that Suzi might have OCD, but I will talk to her about it if I do. There is some history of mental illness in my husband's family, and he's been through some difficult times himself. Perhaps some if it could have been prevented or made easier had he only known a bit more about himself than he did. After the challenges we've faced, we agreed that secrecy within a family is not at all helpful and that we'll be open with our kids, especially in matters such as these. I wish there wasn't such a stigma attached to mental illnesses.

Melodie said...

When I was a kid I used to add up numbers of digital clocks and if they didn't equal a certain number I'd have to stare at the clock without blinking until it changed the time again. I also added up numbers on houses, phone numbers, etc. I don't think either of my daughters have this, and I seem to have outgrown it but I do have some features of anxiety and I know my daughter has it too. Luckily for us, home schooling is paying for her to see a counsellor, so I hope that she will be able to help her with that. As for me, I'm still learning how to deal with it myself.

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