Managing

Timothy has had rages since he was two years old. I remember the first time I realized he was raging out of frustration or anxiety – he was a tiny little thing, with a head full of brown curls. He didn’t have very much language yet; maybe a word here or there, and he was frustrated. His teeth were bared, and he was stomping around. He fled up to his room and slammed the door. When I went in, he pulled the twin size mattress off his bed and threw it at me. I was amazed at the sheer force he was able to get behind it. I think that’s why it sticks out in my mind.

For such a little thing at birth, he sure made up for it in growth spurts. He was 5 pounds, 5 ounces and 21 inches long at birth. At 15, he’s just shy of 6 feet, 250. As he grew, so did his rages, and our ability to keep him from hurting himself, us, or others lessened. We were trained in how to administer a therapeutic hold, something we had to do infrequently, but used at times when he was so violent he was in danger of knocking himself out or seriously injuring one of us. But it became impossible for us to do that by the time he was 12. Tim’s pattern has always been to rage and flee. First punch dad so hard that he hits the hardwood floor with his elbow, causing permanent damage, then run down the street in stocking feet, in three inches of snow, at night; or beat on his sister’s locked bedroom door until his bruised fist has gone through it, then run into the yard, swearing at the top of his lungs, taking the medication I was trying to get into him with him to fling around the garden.

Read the rest at BPkids.org.

Al

I couldn't bring myself to wear pantyhose today.

I just got home from saying goodbye to a friend I've had for nearly 17 years. A friend I've shared a lot of good and bad news with, good and bad times with. A friend who was so unhappy and depressed that he thought his best option was to take his own life and leave his friends and family and wife and children behind.

We met at work, all those years ago, and we disliked each other immediately, mostly because we were both ambitious smart-asses. We managed opposite sides of the same business unit and we were constantly bickering over who was really in charge. After a month or two of that, we realized the other was worth knowing. Worth spending time with. Worth listening to.

We worked together for six years. During that time we had business success, yes, but we also started sharing our personal lives. He celebrated with us when we brought Tim home from the hospital. He was there when we adopted our daughter. I talked to him through his giddy excitement when he realized his girlfriend was The One. I laughed at him taking his dog to a therapist when he thought the dog was jealous of his new wife. We went on business trips and worked trade shows together. Then I quit and moved away, but we still kept in touch by phone and email and Christmas card.

By happenstance, five years ago, we both moved to the same city. We picked up where we left off, and shared barbeques and restaurant recommendations again. Our children played together. I lost a job, and he was my reference. I found a job, and hired him when he lost his. We traveled together again, like the old days.

There are a lot of silly stories about all those business trips. I always liked traveling with him on business trips becuase there was no pressure. We had dinner together after long days with clients. We'd call our spouses at the table and say "hi" to each others before dissecting the trip and the client.

Once, he noticed as we were walking into a client's office, that I wasn't wearing pantyhose. He was wearing a tie, and smarted off that if he had to wear a tie, why didn't I have to wear hose? I explained my philosophy to him. I hate pantyhose. HATE. More than anything but lima beans. So I decided long ago that I would only wear hose on two monumental life events - someone's wedding, or someone's funeral. He thought that was hysterical.

There are a lot funnier stories about things that have happened to us or things we've done over the past 17 years, but that's the story that stays in my head today. Probably because I can't believe it. I can't believe I didn't realize how distraught he was. Me - of all people. Why didn't I listen harder? Why couldn't I tell? Nothing makes sense right now. I can't believe I was at a funeral today. His funeral. I don't understand why he made that choice. Why he's gone. So I didn't wear them. I couldn't. I'm not ready to admit this is a monumental event in his - or my - life. No hose.

If We Knew Then What We Know Now...

Every once in a while, someone asks me if we knew Tim was going to have a mental illness, would we still have adopted him? It’s an interesting question. Maybe I’m just used to being asked all kinds of questions about my two youngest children, since Tom and I are white, our oldest biological child is white, Tim is biracial, and our daughter is black. We’ve gotten lots of interesting looks and comments over the years. Some have been kind, some not so kind.

We didn’t know Tim was going to be biracial. We did get to ask questions about Tim’s birth mother before we decided to adopt him. We’ve never met her, by her choice, but we did get some basic medical information about her and her parents from her mother, before Tim was born. We have no information on his birth father’s family medical history. The night Tim was born, we got the call from his biological grandmother to ask us if we still wanted him – his patronage was a surprise to her too. We brought Tim home the morning after he was born and we didn’t care about any of that. We cared that he had 10 fingers and toes and all his parts were in the right places – the things all new parents care about.

By the time Tim was about a year old, we thought something might be wrong. We consulted our pediatrician who thought it was too early to tell. Our adoption wasn’t final. But we never considered not completing the adoption. At two, we were pretty sure something wasn’t normal. Our adoption was final, and we never considered disrupting it. Same at three, four, five, and so on. The thought never entered our minds.

I wonder, do biological parents of mentally ill children ever get asked if they wish their child wasn’t born? It’s sort of the same question. Our kids suffer so much that, philosophically, it’s a rational question to ponder.

Then I think of Tim telling me he’s my snuggle bunny, even at 15. How his hair smelled as a baby. His infectious giggle. How great his is with animals and little kids. How he taught his sister to ride a two-wheeler when no one else could. His amazing creativity. I can’t even imagine my life without those things. I can’t imagine it without him. If we knew then what we know now, would we still have adopted Tim. You bet we would have. Even with the hard times dealing with this disease, they don’t take away the loving and amazing young man he is.

Lost and Found

** I've been asked to be a regular blogger for the Child and Adolescent Bipolar Foundation. Here's my first blog post for CABF:

“My best suggestion to you is to give up your parental rights to the state of Illinois.”

A doctor told me that. A child psychiatrist my son Tim had been seeing for over a year. A psychiatrist with over 35 years of experience in treating children. A doctor I had come to rely on and trust for help with Tim’s confusing symptoms and long history of vague diagnoses. Tim was just 12 years old at the time, but we’d been dealing with his strange behaviors and unusual speech and seemingly meaningless rage since he was two. Tim was just weeks off his first psychiatric hospital stay, and we were at our wit’s end with meds and school and trying to keep our home from becoming Thunder Dome. Doors were broken. Walls had holes in them. Tim had threatened suicide and expressed hearing voices. Our oldest was staying away from the house as much as he could, and our youngest spent most days locked in her room. I sat there and, for maybe the second time in my adult life, wept uncontrollably....

Read the rest at the CABF website .

A Strange Sigh of Relief

I remember the day my mom saw Jani Schofield and her parents Michael and Susan on Oprah. Jani is a beautiful young girl who suffers from childhood onset schizophrenia. Mom called me the next day, after watching the show off her DVR. I expected my mom's tone of voice to be one of sorrow, or sympathy. Instead, she sounded relieved.

"Wow - there really are other kids like Tim out there, aren't there?" she said. "Yep," I replied, smiling to myself. "There are. And it's great to see them."

I'd been corresponding with Michael Schofield for a few months before the Oprah episode aired. Michael had an idea to start a support group for adult family members raising kids with severe mental illness - a place where we could share triumphs, tragedies, frustrations, and ideas online, and map out our locations so we could physically support each other if necessary. It's sort of a sick and twisted fraternity. We don't cringe or gasp at stories of our childrens' symptoms. We commiserate by sharing similarities. We offer ideas that have helped us and our children. We remind each other to take care of ourselves. We swear and cry about the lack of help, lack of services, lack of hope we experience day to day. We also share pictures and birthday greetings and small victories. It's such a relief when someone posts a note that says, "my kid does this..." and 20 other parents answer, "mine too."

It's the second online support group I've joined since Tim was first diagnosed. The other is an online parent support group offered by the Child and Adolescent Bipolar Foundation. The caring and open group of parents there literally saved our lives. We were at our wit's end, sitting with the safety of our three children in one hand, and a recommendation from a psychiatrist that we legally relinquish our parental rights to Tim to get him the treatment he needs in the other. When I joined a CABF support group, I met other parents who helped educate me on my and Tim's rights, listened to me when I vented my frustration and anger, and shared information on schools and doctors and medication. CABF support groups are free - no membership fee required. It's a relief to talk to other parents who speak the strange language of psychiatric medicine.

Seeing is believing is understanding, but 10 minutes of Jani on Oprah wasn't near enough. Jani and her parents and two friends who also suffer from severe mental illness will be on ABC's 20/20 this Friday, March 12. It's an hour looking at the life of these three girls and their families in Southern California. All three of these girls, all under the age of 14, have childhood onset schizophrenia. Please watch or set your DVR. Every time someone is brave enough to step up and talk about our kids, I breathe another sigh of relief that one day, people will understand this is a real disease that impacts real families.