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Advocacy is power

mother and daughter embracingMy mom was in her mid 30’s when she was first diagnosed with major depression. I remember coming home from school, hoping to see Super Mom, but instead I found her lying on the couch, fast asleep every day. I was young, and I didn’t understand why she couldn’t just snap out of it. “What is there to be this sad about?” I thought. It wasn’t until I fell into my very own bout of depression that I understood.

When I was fourteen, I was diagnosed with bipolar disorder with schizotypal features. I, too, began to sleep all day, and my friends wondered why I couldn’t just snap out of it. While I slowly dissolved into the living room couch, my parents fretted over my future, and it was the first time in years that my mother showed any sign of concern, or interest for that matter. Because I was so depressed, I wondered why she even bothered to try.

My parents started to educate themselves on my diagnoses. They learned how to navigate the system and advocate for my needs and best interests. They met other parents who were going through similar things. Eventually, they got me to go to a youth group and an alternative high school that helped me come out of my shell. I was making friends, using coping skills, and learning to advocate not only for myself, but also for better services for youth within the mental health system.

I felt strong again. I was speaking up at my own IEP meetings, making well-informed decisions and partnering with my parents rather than sitting on the sidelines and letting them do all the work. We made a great team. Even my transition from teen to adult was relatively smooth considering my mental health needs. It seemed like I was going to ride off into the sunset a happy camper.

This is my story. Many people have heard it — but I never delve into what happened after the happy ending. A few months shy of my turning 19, my mother’s depression came back with a vengeance. She took to lying in bed for days on end. This time it was different — it was worse than the first time around, and I was older and experienced enough to understand what she was going through. My father and I tried to rally the way they had for me, but she didn’t respond to our efforts. We felt hopeless because she had essentially given up.

In 2011, my father died and I became my mother’s caretaker at the age of 23. Despite becoming miraculously resilient against my depression and anxiety, I was still quite young for my age. I barely knew how to be an adult, let alone take care of one. On top of my mom’s mental health needs, she had mounting physical ailments as well, and I was losing my mind trying to figure out how to care for her. I had no car, limited funds and almost no support. When it felt like all hope was lost and I was going to drown, I remembered that I indeed knew how to swim.

While I did not know how to balance a check book, drive a car, or set up my mother’s oxygen tank, I did know how to advocate. I called doctors on her behalf and got them to give her the care she needed. I helped get her set up with adult DMH services so she could receive adequate supports. I helped her get into a program that helped her with independent living. My voice and determination helped my mother live again.

Today my mother is doing well. She lives on her own with minimal support — but she knows that her team is only a phone call away should she need them. She is re-learning to advocate for herself with my help, the way she taught me when I was young, and while I’m still learning the ways of adulthood, I’m using my skills to make the best of every day. I guess, as it turns out, learning to advocate all those years ago ultimately became my biggest asset.

Chandra Watts is our guest blogger.  She is a young adult who draws on her own life to change how the world sees mental illness.  She is one of the founding members of Youth MOVE Massachusetts.

It’s just a phase and other lies they told me

truth liesWhen my son was four, he had imaginary friends. They had to be seat-buckled in the car, be served their own buttered roll at dinner and tucked in at bed time. One of his imaginary friends was called Baby Monster. His imaginary friends didn’t go away in six months or a year and I worried. When I brought this up with my son’s pediatrician, he said, “Many children have imaginary friends – it will go away on its own.” But they remained and by age eight, Baby Monster had turned into a voice that told him to hurt his brother.

His anxiety grew and grew and midway through first grade, he became terrified to leave the house and go to school. He slowed things down so he missed the bus, he cried, he pleaded and eventually he would shake and curl up into a ball. “Lots of children have separation anxiety, his teacher explained. “He’ll grow out of it.” I tried one strategy after another but none worked. Everyone but me was sure that it was just a phase. Lots of children in kindergarten and first grade go through something like this, I was told.

Like most parents, I wanted to believe that these things were temporary. I took the advice of the pediatrician, the teacher and sometimes other mothers to heart. They said these things were in the ballpark of normalcy, so I shushed my inner intuition. I tried not to listen to my worries, but I still felt concerned and frustrated that my son wasn’t growing out of his “phases.” He was a young child and it seemed like time was on our side. “Wait and see,” I kept hearing. I waited, but things got no better and then they got worse.

Turns out the advice givers were wrong. It was not a phase, or a stage. He didn’t grow out of it. It didn’t go away on its own.

When you are told that your worries are unfounded, again and again, something changes. You become cautious about whom you confide in. When you are telling a story about your child or recounting an event, you watch the other person’s face and, at the first hint of disbelief, you stop or ratchet down. When you hear stock phrases such as “it’s just a phase” repeatedly, it finally stops reassuring you and makes you wonder why only your child is the one with a phase going on for months or even years. This caution can last for years and spill over to new therapists, new providers and others.  They sense a distance in you, a reserve.

As parents, we fear labeling our child or pathologizing them. There are a number of articles out there saying that we are “pathologizing childhood” and I flinch when I read some of them. John W. Whitehood in an article in the Huffington Post claims that what is simply childhood behavior such as distractibility, nonstop talking and showing emotions without restraint is now being diagnosed and treated, often medicated. He claims that these are behaviors that don’t need an intervention. On the other side is Thomas Insel, MD, the director of the National Institutes of Mental Health. He suggests in his blog that there is a “real increase in the number of children suffering with severe emotional problems, just as there is a real increase in the number of children with diabetes and food allergies.” While there may be children and teens who are getting more medication than they need, there are also others who never get the treatment they need, he adds.  But with diabetes and food allergies, parents don’t worry about labeling their child.  They know it’s not a phase.

These are two quite different points of view which can influence how we see our child. When we see things that worry us in our child, should we seek help, even treatment? Or chalk it up to childhood behavior?

We observe our children from the moment they are born. We notice both the big things and the little ones. We see the small changes, the ones that persist and the ones that come and go. We are like scientists in a laboratory, putting forward hypotheses (sometimes right, sometimes wrong), making careful (mental) notes and comparing the evidence we see against what we expected. We become experts on our child, knowing what things are worrisome and what are just his or her quirks. That expertise is valuable and often unacknowledged.  We shouldn’t let anything get in the way of using that expertise to help make decisions.

Science shows that treatment often produces better results if started early. Some studies show that earlier treatment such as effective therapy and the right school environment (with a zero tolerance for bullying) may lessen the need for medication. The key is to stop saying that it’s a phase and seek help. If my son had had medical symptoms, I would have been encouraged to be proactive and praised for noticing early signs of what turned out to be a bigger problem. My inner intuition and my parental expertise would have been bolstered. Like many other families, we had to get to a crisis point to get everyone on board.

Parents worry about their children; it’s part of the job.  Just as pain can tell us to seek medical attention, worry can propel us to get help too.  A parent’s worry can be an early warning sign that something needs immediate attention, not reassurance or false comfort.  Children are wonderful in their variety and complexity and their individual responses to life’s stressors can be all over the place.  But when a parent’s radar goes off, when that inner intuition tells you that this is serious, it needs to be respected and validated.