Karen A. - NAMI-NYC

How did you find NAMI?

It was 2011. My daughter was 12 ½ and having increasingly extreme reactions. I started doing research, because I knew I was not dealing with the same kid I had been up to this point. At one point my daughter ran away and was missing for 8 hours. A therapist told me to take her to the hospital for an evaluation.

I had already found NAMI online during my research. Through a serendipitous series of connections, a co-worker of my brother said, “What your sister is going through with her daughter happened to me.” She was already very involved with NAMI herself and suggested I contact NAMI.

While in the hospital, my daughter was diagnosed with a mood disorder—bipolar. I started taking NAMI Basics within one month of the hospitalization. And I made my boyfriend come with me.

I knew I had NAMI backing me up. It was a really warm comfortable safety net while I was doing a high wire act. I knew I didn’t have far to fall.

What was your first experience with NAMI like?

Relief! A feeling of understanding and tolerance. Validation that I was on the right track. No judgments. Plain straight talk. Hope.

I signed up for Basics and asked for a Parent Match (now Family Match). Parent Matching is awesome. When I needed the strength to get through the next 5 minutes, she would listen and say, ‘Yes, that sucks.’ She didn’t try to solve, or to minimize. She listened, and she talked about similar experiences, and how she got through them. There was nothing I could say that she hadn’t seen, done, etc, before…there was a lot of comfort in that. It’s very different from someone who says, ‘Ok, that happened…now what will you do?’ It was very empowering. Empowering because she didn’t diminish the reality of my experiences, and it validated my instincts. Just deal with what’s in front of you—there’s no applying logic. Stop applying logic. That reframes things that don’t make sense.”

There’s no shame, no blame. It is what it is. There is no sugar-coating, and you’re operating with the best information you have right now.

Basics did two things for me…and that was my “Aha! moment.”
First, just learning that mental illness is a physical illness… That information changed my perspective in that it changed everything about my approach. And it helped me see that I was already ahead of the game. I already knew a lot because I had done so much research. I realized I was already in a much better position than everyone else in the class. I knew I had to share this information with other people. So…I started teaching immediately. Because it was selfish not to. I took teacher training as soon as I could, and then taught my first class three months after I finished taking my class.

I started handing out NAMI flyers at the psych ER to other parents. Because these kids aren’t gonna get better from only one person—they need a team.

How do we get to a place where we get to parents before they find themselves in psych ER? Much more thorough screening by pediatricians and schools. We need to screen for depression in schools. We need to remove shame and blame from the equation…because that impacts good outcomes.

I also came to the Parents of Children and Young Adults support group, which is recommended and encouraged if you’re taking Basics; also if you have a Parent Match. That way, more pieces are connected, which leads to better outcomes.

Why did you keep coming back to NAMI?

I needed to build a support network. And I felt comfortable and safe here. I also realized that others needed even more help than I did.

For a long time, I was just a parent who came to the support group. It became like how other people go to church. It gave me life validation and fellowship. I got very very involved. I went every single week unless I was out of town. So that meant I was there if my kid was doing awesome, and so I could provide support…and I was there when my kid was in crisis, and I needed support. I was in the support group for 5-6 years and was a co-facilitator for one year.

Parents of Children and Adolescents is a little different than the other support groups because the participants tend to be more in crisis, dealing with their child in the early stages of the illness. But because they are parents of underage children, the parents can actually do something. So they have the ability to effect outcomes. If you take a young enough kid and treat them aggressively, like you would any serious medical illness, the kid has enough time in stability to want to stay in treatment.

I was also a Parent Match for 5-6 years.

NAMI gave me an awareness of how this effects people on multiple levels, and it turned mental health into a dinner table topic. Some people talk about politics or current events, we talk mental health care. We have open discussions about mental health symptoms, treatments, stigmas. She knows I have a ton of info and resources and if I don’t know how to find out, I know someone who will. Therefore she’s open about herself and others and not afraid to ask for help. My kids learned that kids could advocate for themselves if their parents can’t or won’t help.

I started Knit 2 Unwind support group. I realized that NAMI and knitting had saved my butt over the past two years. It combined self-care and social interaction. There is no criteria other than that mental illness touches your life in some way.

I was also on the Family Advisory Board for 3-4 years, and the chair for 1 year. And I went to Albany for Advocacy Day.

Let me tell you this story about one of my Basics classes…

In the first class we ask, “What do you expect to get out of this class?” Many of the parents who take Basics are required to be there through ACS (Administration for Children’s Services). This mother wrote, “I expect to get nothing.” At the end of the last class, we ask, “Did you get what you expected out of the class?” This mother started crying. She said, “It’s true, I really thought I would get nothing out of this. And then you told me that it wasn’t my fault.” I hear that a lot. For so many of us, this is the first time we hear that. It’s really powerful.

What did you gain from NAMI?

Courage. Knowledge. Back-up. Voice. Power. A sense that there was a large number of people on Team Melissa [my daughter].

I felt like I had an entire army on my side of the table to fight for what my child needed. There are so many people who had been there.

I knew I had NAMI backing me up. It was a really warm comfortable safety net while I was doing a high wire act. I knew I didn’t have far to fall.

How has NAMI changed your life?

I know I’m not alone. I have a warm and comfortable safety net. I’m not scared.

What does it feel like to walk through the doors of NAMI now?

Like coming home.

What does NAMI mean to you?

I cannot imagine my life not connected to NAMI. It’s always there, always supportive, even if the individuals change. It’s like having a wise and kind grandma to feed me cookies after school. She will listen to the good and the bad and celebrate and cry with me – whatever is happening.