|The Price of Silence: A Mom's Perspective|
on Mental Illness, is now available in
Six Lessons I Learned in My Ten Year Quest for Treatment
In December 2012, after a tragic school shooting in Newtown, I thought I was the only mother in America who asked myself, “What if that’s my son someday?” It turns out I was far from alone. Every single day since I shared my family’s struggle in a blog post, “I Am Adam Lanza’s Mother,” nearly three years ago, at least one parent has reached out to me with a similar story of trying to get mental health care in a broken and fragmented system. I wanted answers—not only for my son, but for millions of other children and families who are struggling. As I researched the problem for my book, The Price of Silence, I also found some answers. These are six things I learned during my family’s long and painful journey toward treatment and hope.
1. Speak up. You are your child’s most powerful advocate. Too many parents of children who have mental illness suffer in shame and silence, or are even in denial about their child’s illness. If your child is very young and exhibits behaviors that seem abnormal—frequent night terrors, excessive tantrums, or sensitivity to noise, for example—talk to your pediatrician, and ask for a referral to a specialist. If a medical professional tells you, “Oh, he’s just a boy,” or “She’ll grow out of it,” get another opinion. If your adolescent comes to you with mental health concerns, always take them seriously. More than 4,600 young people ages 10-24 die by suicide each year.
2. Find support and resources. Your local NAMI or Federation of Families can be a great place to start. Organizations like ChildMind.org, AtWitsEnd.org, and Understood.org connect parents with information and resources as well. Finally, Facebook groups can provide comfort and a safe space to share your challenges with people who understand. To protect their members, many of these groups are secret, but you can message me, and I’ll connect you.
3. Explore multiple treatment options. While medications are an important tool in treating mental illness, they don’t work the same way for everyone, and some have serious side effects. Educate yourself about the risks and benefits, and work with your child’s doctor to identify the most effective treatments. Many children who have mental illness also benefit from other therapies. Young children might do well with Parent-Child Interaction Therapy. Applied Behavior Analysis has been successful with children who have autism. My son benefits greatly from traditional psychotherapy, which helps him to manage the anxiety he feels because of his bipolar disorder, and from occupational therapy, which helps him with his sensory processing issues. And his smart phone has also been a useful tool for him, helping him with everything from medication adherence to stress management.
4. Work with your child’s school to ensure that he or she has educational support. Children who have mental illness, especially those who live in poverty, are too often shunted into a school-to-prison pipeline that denies them a meaningful future. Your child has the right to a free and appropriate public education. The school district should work with your child to provide accommodations and supports that will enable your child to learn and develop. Note: special education can be baffling for parents. I recommend a consultation with a disability rights attorney or professional special education advocate who can walk you through the process.
5. Take care of yourself. Caregivers of children with mental illness report stress levels similar to combat soldiers. It can be hard to manage the financial stress of costly therapies and complex treatment schedules. In fact, respite care is one of the services that parents most frequently report they need. Take time for yourself every single day, even if it’s just a 15-minute walk or a few minutes to journal. It will make you a better caregiver for your child.
6. Never give up hope. When I shared my family’s story after the Newtown tragedy, I felt helpless and hopeless. But because I spoke up, my son got the help he needed. He has not made any threats of harm to himself or others for more than two years, since his last hospitalization in May 2013. He is back in a mainstream school earning good grades, and he just finished writing his third novel. Most important, my now 15-year-old son has really taken charge of his illness and is becoming a powerful advocate for himself and for others. When we accepted a joint advocacy award from Idaho Federation of Families in 2013, he said this: “I’m not a politician. I don’t give speeches. But I do know this: The stigma and discrimination against people with mental illness has got to end.”
It took us ten years to find the right treatment. And our story is not over. I do not think that anyone would say that a diagnosis of bipolar disorder is a “happy ending” for a child. But it is an answer, and it provided a path for us. As we follow that path, I have every hope that my son will live the happy, productive life that he—and every child—deserves.