The six words no parent wants to say, “I am worried about my child.”
That has been the start of more conversations than you can imagine—I have honestly lost count. I always answer my phone because my number is in the contacts of old friends, friends of friends, new friends, my children’s classmates, my classmates from college, high school, grade school and sometimes complete strangers. In each call, I learn each family’s unique story; while every story is different, each one has a similar thread. Every mother is calling terrified, in need of answers and most of all looking for affirmation that they aren’t overreacting.
Every single call has tears.
I answer my phone because along with my husband Jeff, we have been there. The sleepless nights; the excruciating pain and unrelenting fear, that your child is more than struggling and not knowing where to turn. We are raising a son (15) on the autism spectrum; and a daughter (13) that has an eating disorder. Some calls I receive are about eating disorders and autism, still others are about anxiety, OCD, depression, and even more; but many parents don’t know what’s wrong. They just know, just like we did that their precious child had stop thriving.
This month included National Eating Disorder Awareness week, we don’t celebrate it in our house. We stop, regroup and acknowledge that there are millions of families that don’t know where to turn to get support for their children. But I do. And each call that I take, is one family that I can love through the process and tell them this truth : Your family’s recovery story is about to begin.
I answered an email today and explained my reason for advocacy.
“I won’t let another generation of kiddos be stigmatized by illness that have behavioral health components. We are better than that—maybe it’s our collective ignorance of the beauty and complexity of the brain, that we continue to stigmatize, what we don’t understand. But it will be my life’s work to end the stigma.”
Last August, I wrote in the Washington Post about Norah’s eating disorder. The biggest negative push back , was that I didn’t use a pseudonym. According to some, I had violated my daughter’s privacy. Jeff and I were frustrated and disappointed; we had discussed at length how we would share our children’s stories. If I had published a story about Norah being misdiagnosed with cancer, NO ONE would have batted an eye. BUT because eating disorders have a behavioral health component, I was a horrible mother, and individuals commented that I was directly limiting her ability to gain access to college, insurance or employment.
That friends, is what stigma looks like.
According to the CDC, about 6 million individuals under 18 have been diagnosed with ADHD, 4.4 million have a diagnosis of anxiety, and 1.9 million with depression. And that is just the tip of the iceberg, and it tells us there are a whole lot of us raising children with some sort of behavioral health issue.
This generation of children amaze me, we have tirelessly instilled in them that they need to love people as they are; to be inclusive of our differences, and to have empathy. And you know what they do… Our kiddos don’t judge. They love their friends for who they are, and all the challenges that they each face.
The real issue in this world is us. The adults in the room. Why? Because sadly, we are the stigma. The reality is we are a nation filled with children that are struggling. And we are not giving our children the tools to successfully get help.
As parents, no one wants to share that their children may have behavioral health struggles. We don’t want to say that our child has anxiety, depression or OCD. No one plans when selecting baby names, to expect their child will have autism or anorexia. That is ridiculous. We want our children to be the unrealistically perfect ideals we have created in our head. As parents, we continue to paint that unrealistic picture even at times with our closest friends, family and on social media that our lives are perfect, our lives are all good here, we are just too busy.
Maybe some among us, carry the guilt or shame that they have caused this to happen, thinking if only…
Let’s be clear, behavioral health issues are a complicated soup of genetics, biology and the world we live in. You know what else is a complicated soup of factors—childhood cancer. And we don’t blame the parent, or their children when someone is diagnosed with leukemia. No. We make them casseroles, drive carpool, and do fundraising walks to end the disease.
Here is my family’s truth, every week we spend two hours in therapy with one or both of our children. We have standing appointments. We even do all four of us— that’s family therapy . When someone asks what we are doing after school today, you know what we say…
“We are in therapy.”
I work six hours a day with my employer and when I leave at 2:30 I say, “I’m off to therapy...” Is this expensive? Yes. But the alternative is not something my husband or I will tolerate. We are not wealthy. We treat therapy like chemo, we would never refuse our child access to chemo because it was time consuming or expensive. I openly tell people I have a son on the Autism Spectrum, and he struggles with OCD and anxiety, and I have a daughter who since May 2017, is actively in treatment for an eating disorder and anxiety. People look at me and say… “Bless your heart, I’m so sorry, that must be so hard.” And my response is the same. “Are you kidding me? I’m grateful. I know today, exactly what my children’s struggles are and that’s why Jeff and I are “all-in” to get them access to the best treatment possible. Our children are the lucky ones.” (Yes, we know we have excellent employers, with good health insurance and we know many people aren’t so lucky. The discussion of our health care system, especially mental health care, will have to wait for another time.)
We live in a world which is driven by success. Success at whatever cost—happiness is considered a by-product of that success. What my daughter’s eating disorder recovery has taught me, is just because your child is physically capable of doing something, doesn’t mean they should. Just because my daughter can take every AP class in high school, finish high school early and go to an Ivy—doesn’t mean she should. Our definition of success is based on wellness. Do you like going to school? Participating in your favorite activities? Do your friends make you belly laugh? Do you get enough good restorative sleep? Does your anxiety remain at or below your baseline? Are your OCD behaviors managed? What made you happy today? What gives you joy? The answer to these questions and oodles more provides us the framework of success.
Our children are also learning that they are the architects of their future. The hard, exhausting work they are doing today, it will aid them in adulthood. There are no guarantees in life, and we want them to have tools and skills to navigate this complicated world. Which is why we have taught them that they need to become their own advocates, get comfortable with their struggles and own their strengths, call out the OCD, call out anxiety, tell people you have anorexia. These messy and uncomfortable parts of you today, will become your superpowers of empathy, compassion and resilience tomorrow.
Which gets me back to stigma. Think of a world in which we put as much focus on our children’s behavioral health supports as we did on the travel soccer team. What if we shared our children therapist’s name the way we share or favorite tennis coaches’ number? What if you coordinated carpool for the meditation/breathing class designed to relieve your kiddos anxiety? What if you focused your resources and attention on your children’s mental health at the same level that you do for your child’s SAT performance? What if you shared what medications were working for your child’s depression with another parent?
What if… Stigma… We are the problem. AND We are the solution.
My children go to therapy, we see experts in behavioral health, they will change the world…
I hope that their future is one in which behavioral health will be discussed like autoimmune disease, diabetes and cancer.
We are the change… Are you with me?
That is where I meet you on the road today, my fellow Pilgrims.
Namaste: The Divine in me humbly bows to the Divine in you.