Wednesday, December 23, 2015

Christmas letter 2015

Dear Family and Friends,

Merry Christmas! We pray the year’s end finds you filled with hope and peace. While mental illness loomed large here this year, we’re closing 2015 with hard-fought hope.

Peter, turning 14 in a few weeks, suffered a concussion in August, 2014, having fallen out of a tree. The worst of the mental effects lasted 10 months. Finally, in June of this year, Peter started reading with the concentration and speed he previously enjoyed. The concussion also worsened his Obsessive Compulsive Disorder, or perhaps puberty did, which is common. Either way, his OCD is now in the moderate-to-severe range.

OCD is an inherited condition, like all anxiety disorders, but the genetic component only predisposes a person to experience anxiety of various kinds. How we respond to the anxiety (in this case, obsessions) is the main problem; the wrong responses create pathways in the brain that make the condition harder to treat. Forgive me for the textbook definition below in italics, from the International OCD Foundation, but as a parent of three sufferers, I understand the need for awareness in the general culture.

What is obsessive compulsive disorder (OCD)? 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 the child feels he or she must perform repeatedly to reduce the upsetting feelings or prevent something bad from happening. To be diagnosed as OCD, these behaviors must be time-consuming and interfere with the child’s daily life.

What kinds of obsessions do children and teenagers have? 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.

What compulsions or rituals do children and teenagers have? 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.

How common is OCD among children and teenagers? About half a million children in the United States suffer from OCD. This means that about one in 200 children, or four to five children in an average-sized elementary school, and about 20 teenagers in a large high school may have OCD.

My research also revealed that OCD sufferers are of average or above-average intelligence, and tend to be very conscientious people. Although some have shocking thoughts as described above, they are the least likely to ever act on such thoughts. OCD is not a mental illness that leads to violent, criminal, or deviant behavior. OCD-impaired brains produce what most shocks the sufferer, and their conscientious natures respond with panic.

I’ve learned that all of us have shocking content occasionally produced by our brains, but we have a mental filter that works, so nonsense thoughts discard immediately--so rapidly we barely notice them. In those with OCD, the mental filter works improperly, and the weird thoughts produce horror, shame, and fear, all of which the sufferer feels desperate to neutralize.

Responding with rituals reinforces the obsessions (fears) in the brain, causing the thoughts to occur more frequently and expand in scope, and at the root of it is a preoccupation with certainty. Thus, the OCD driver who circles the block for two hours, looking for the person he hit with the car. Yes, it gets that bad… or the child stuck in the bathroom at school washing for 30 minutes…or the sufferer who cleans the house for hours at night and makes everyone change their clothes upon entering…or the sufferer who can’t leave the house because an OCD loop is making them check the locks and windows and stove countless times. No matter that the sufferer knows the fear or scenario is irrational; it doesn’t matter, because the need for absolute certainty drives the rituals.

The disorder starts as early as 6 or 7 years old, although in many people it won’t manifest until a stressful event or transition triggers it in adulthood (even the hormones of pregnancy can trigger it).
There is hope. OCD is a treatable condition, with about 70% to 80% responding to the proper therapy, although the therapy isn’t a cure. This is a condition, like diabetes, which requires regular management. Some need SSRI medication for life to avoid relapses, but medications work best in conjunction with therapy. Some people, especially those without access to proper therapy, become impaired enough to be housebound, and some stop eating because of obsessions relating to food contamination.

We’ve tried two therapists, both an hour away, but neither were a good match. No one in our area knows the proper treatment protocol, so we will be paying out of pocket starting in February for an experienced therapist who specializes in Peter's type of OCD. This retired therapist works out of PA, having formerly worked with university patients for decades. Peter will be receiving Skype coaching from him for $45 a session, which is far cheaper than the $100 to $200 a session that experienced therapists normally charge.

Our faith carries us through. Peter loves the Lord and while he’s struggling mightily and gets depressed over the condition, he isn’t bitter; he doesn’t blame God. Those suffering from mental illness are among the bravest in our world, but sadly, their courage mostly goes unrecognized.

A Christian for 18 years, I’ve come to understand that whatever path the faithful must walk, it is God ordained. A higher purpose exists for everything we suffer, and as long as we focus on God’s purposes and promises, we can finish the race well--without bitterness and with soul joy that eclipses pain. God promises to those who love him not a comfortable life, not fame or fortune, nor respect or recognition. He promises his presence, his everlasting love, and grace that abounds. We have all of that...so we’re rich!

In other family news, Beth just turned 7, Mary just turned 9, Paul just turned 12, and Peter, as mentioned, turns 14 in a few weeks. Beth’s juvenile rheumatoid arthritis, diagnosed at age 2.5, wasn’t responding well enough to the low-dose cancer drug, methotrexate. In March, 2015, she started a second drug, Orencia, via monthly hospital infusions. Orencia is a rheumatoid arthritis drug that works on the autoimmune response & inflammation. Her methotrexate also works on the autoimmune response, and her third drug, twice-daily naproxen, works on reducing inflammation. She’s doing well now, running like any other child, though she tires easily during exercise. The question looms as to whether she will be among the 50% who grow out of childhood arthritis. There is a window for remission before puberty, and then again in her teen years. She has an aggressive case, which does not mean she’s less likely to grow out of it. Her involved joints are both knees, the left ankle, and a wrist. Her eyes have been clear of inflammation for 2 years now.

She amazes me, my beautiful Beth--full of grace like her name (her real name is not used here on the blog). What a rain of sunshine in our lives! Art is her passion, as is acting and dancing and stories. She has a mild case of dyslexia, which contributes to her artistic, imaginative bent, but thankfully her reading is up to speed this December, and numbers and letters are slowly finding their proper way with pencil and paper. She loves school and stuffed animals and dolls, putting together tea parties and school rooms for her stuffies.

Mary, always a gentle soul, remains stubborn but less so now at age 9. She delights me, this tomboy in tune with nature and at home with frogs, toads, salamanders, katydids, grasshoppers, and praying mantises. She delights in her sister and brothers. Thanks to homeschooling, there’s genuine appreciation and love evident in their strong bonds. Of all the blessings inherent in homeschooling, strong family bonds trump them all.

While Mary’s dyslexia is somewhat worse than Beth’s, she’s cracked the reading code and beginning to soar in her personal reading time. Dyslexia, occurring in approximately 1 in 5 people, is something else I’ve had to research extensively. Thankfully, it’s as much a blessing as it is a reason for impairment—bringing intellectual gifts and talents shared by actors, entrepreneurs, artists, and architects, as well as scientists and doctors who see possibilities missed by others.

Paul is doing well--his OCD, along with Mary’s, is only mild at this point. Growing in his faith, he loves church and youth group, art, writing stories and plays, math, basketball, computer programming, and teaching.

Peter still loves observing nature, and enjoys reading, basketball, and gardening, though his OCD has muted his hobbies and passions. It’s stolen things from him and that’s hard to think about as I write this. He still wants to do missionary work and still has a passion for sharing his faith, but we hear far less of that and more from the OCD.

I purposely make sure the kids avoid the video game and hand-held technology monster that’s taken over the nation’s youth. Our rule in parenting is: only say no when you can’t say yes. Much of that focuses on what is best for kids, verses what they think they need. We want them to distinguish wants from needs, because the loss of that perspective is what keeps people from making an eternal impact on the world.

Thankfully, the youth group coordinators work hard to get these kids playing cooperative games and exercising, and enjoying and appreciating each other on other levels, as they deepen their mutual faith and trust in the Lord. Service-oriented projects, like helping out in soup kitchens, are also planned monthly. My boys enjoy all of the activities.

We’re in a different church this year, having found one that offers its own AWANA program, its own Vacation Bible School, as well as a youth group for both middle and senior high. I’m teaching middle school AWANA, and no one is more surprised than me that…wait for it…I love these kids! I abhorred subbing for the middle school when I was working on my teaching credential. After several tries, no degree of poverty could convince me to return to the middle school campus.

Since Beth began first grade work this fall, I’ve found little time to write. It’s a passion on hold, though I do keep a gratitude journal. The boys start ninth grade next fall (at home) and the good news is that I’ve stopped hyper-ventilating about homeschooling through grade 12. It was always the plan, but when we began to plan their four years of college-prep courses, anxiety set in. Hours and hours of research preceded my present calm. It’s coming together and the boys and me are really looking forward to it. I love their company and learning along with them, and what I can’t handle the local junior colleges can handle through dual enrollment. DVD courses and Skype courses are also a reality for homeschoolers in the maths and sciences, though Paul is the family math tutor. If I can’t handle the fetal pig or frog dissections, I’ll hand it over to hubby for his weekend fun. Wink.

Really, hubby's a good teacher and enjoys rounding out the curriculum for us.

My husband is still working as a custodian in a church and an industrial building, and still working hard to care for his dad, who is nearly 93 years old and resides in Florida by himself. His father suffers from mental illness, including severe OCD, and is very difficult to deal with, both by phone and in person. We’re really at a loss as we seek to ensure his dignity and overall well-being, and follow his personal wishes. More than occasionally he acts irrationally and stops answering the phone (which happened this week). Usually the long phone conversations occur every couple days, but regardless, we keep in contact with his neighbors, who buy his groceries and watch out for him as he checks his mail and puts out his trash.

Happy New Year to you and yours! We pray your 2016 is full of love, peace and joy, with the Lord ever present in your lives. Thank you for your friendship and love!

6 comments:

Margie said...

Merry Christmas To you and yours!

Christine said...

And to you too, Margie. Thank you, and so good to hear from you!

multicolouredsmartypants.com said...

You certainly have your hands full. Happy Christmas to you all!

Christine said...

And Merry Christmas to you, Sandy. Happy New Year too. Thank you for your love and prayers in 2015! I appreciate you sharing and caring.

Beth Bullington said...

Merry Christmas - I enjoyed reading your family update. I continue to pray for you as you parent each child with their needs.

Tesha Papik said...

Hello my friend I have missed you! I just do not seem to have time to blog these days... I m not sure why other than I have a 7:00 rule for technology so I can sleep better and blogging during the day seem impossible! Love this update letter and I will be praying for Peter that the new new treatment works wonders and that all these struggles only draws him closer to the Lord and the good purpose He has for Peter!