What I want you to know about raising children with mental illness

What I Want You to Know is a series of reader submissions. It is an attempt to allow people to tell their personal stories, in the hopes of bringing greater compassion to the unique issues each of us face. If you would like to submit a story to this series, click here.  Today’s guest post is by Dawn Bizzell, M.Ed.

Trigger Warning: Suicide, Mental Illness, Self-harm

I want you to know my children. I want you to know how beautiful, talented, and amazing they are. I want you to know that they have much to offer the world. My daughter is artistic. She plays the piano, viola, and some guitar and bass guitar--the last two self-taught. I want you to know that she is empathetic and compassionate. I want you to know that my girl volunteers at our local animal shelter and would take every single animal home, if we let her. I want you to know that my son is a talented athlete desired and recruited by various select teams. I want you to know he chose to give up band, which he excelled at, because it conflicted with being able to work with the autistic and physically handicapped students at his school during his lunch period. I want you to know that he volunteers time with Special Olympics and loves every minute of it. I want you to know that my children are both intellectually gifted and do well in school. My daughter is only 14. My son is but 13.

I want you to know that my children are also the face of mental illness—the stories you never hear. Their stories are the “norm” when it comes to young teenagers dealing with mental illness whose symptoms may begin around 9 or 10, or even earlier. My children, between the two of them, face struggles with major depressive disorder, anxiety, bipolar disorder, self-harm, attention deficit disorder, and we have survived one very serious suicide attempt. I want you to know that my children are valuable, loving, and productive, that they are worth all the effort and heart ache, and that they are not their disorders.

I want you to know that it is OK to talk about mental illness with us. Conversing about the topic with us communicates that you care and that we can be authentic, and we can just be. Keeping mental illness locked in the dark closet for so many years has lead and fed the stigma, fear and misinformation that surrounds this topic still in our society. The media only reports on the rare, and often unsubstantiated, reports and assumptions made about mental illness every time a violent act is carried out against others. The vast majority of individuals struggling through some form of a mental illness never display violent behavior and need not be feared. 1 in 4 individuals will struggle at some point in their lives with a mental illness, and most hold jobs, contribute to society, and raise families, just as my children will someday.

We want you to know that our children’s mental illness is not our fault. We did not cause it. We would all take it ourselves for them if we could. We want you to know that our kids’ therapists, doctors, and our support group members remind us over and over that it is not our fault. We want you to know that we need this repetition because we still blame ourselves, especially on the bad days. Mental illness, and even suicide attempts, are never the result of 1 contributing factor. The causes, biological factors, and histories, are always multifaceted and complex. We want you to know that we do not ship our children to inpatient facilities or residential care facilities because we don’t love them or just don’t want to deal with them. We do need breaks, respites, and alternative perspectives and objectivity. We make decisions that insure every member of our family is safe, needs met, and all members are receiving the necessary support.

I also want you to know that parents who place their children on medication to address their mental illness often do so as a last resort. While there are people who portray us as people just wanting a quick fix and looking for a magic pill, the truth is the majority of us have tried everything else before we agree to medication. Most of the time our children are already in counseling, support groups, and have been through a battery of tests. Depression, ADHD, anxiety, OCD, schizophrenia, bipolar, etc., are illnesses like diabetes, high blood pressure, or cancer. As a society, we do not shame individuals with diabetes or high blood pressure for taking their medication. We don’t tell a child with asthma that they are just using medication as a crutch, nor do we tell them they just need to decide to be well. We don’t usually tell individuals with auto-immune diseases in our churches to get over it, they need to pray harder, or place the blame for a cancerous tumor directly on the sufferer. There would be an outcry if we told parents that they were going to turn their child into a drug addict if they use their insulin, like we do when a child is taking a stimulant to help with focus in school. And, yet, our children and their parents have heard all of these things laid at our feet and on the backs of our children. (On the contrary, individuals whose mental illness is not being addressed with the appropriate medication will medicate themselves with illegal drugs and alcohol.) Mental illness is an illness that is not always curable, but it is treatable—and the earlier we start the better. Multifaceted approaches are often the most successful in maintaining physical health, mental health, and emotional health. Counseling, support groups, medications, exercise, good sleeping and eating habits are all necessary for our mentally ill children, just as they are for children with other chronic or serious illnesses. The medications, strategies, therapy, and skills we agree to for our children are based in research and best practices.

I want you to know that in my parent support group, we often joke that mental illness is not a “casserole illness.” If my child were diagnosed with a dreaded disease, friends, family and church members would arrive laden with food for our tables and freezers, send cards and flowers to encourage us, and would place us on all the prayer lists and organize help cleaning the house and running errands. And what happens when one of our children is rushed by ambulance narrowly surviving a suicide attempt? A few people might show up at the hospital as long as we’re still in ICU or the “normal” parts of the hospital. I know families who sat all alone in an ER waiting room after a loved one died by suicide, no one coming to sit with them, and no one mentioning the manner of death or acknowledging their loss in public ever again after the funeral service. What happens when one of our children comes home after weeks in an inpatient psychiatric facility? We struggle to function on little to no sleep keeping one eye open all the time to make sure our child is not alone and is making safe choices and having healthy thoughts. And we eat ice cream floats for dinner, because it's all we can manage to fix and keep down.

I want you to know that we are never the same after our child, or children, experience failing mental health and we survive episodes of self-harm, suicide attempts, and searches for the right medications with the fewest side effects. We struggle to keep up with therapy and psychiatry appointments, tracking mood changes and meds changes, and continually dealing with schools who do not know how to support or manage accommodations for the mental and emotional health of our child. Who can make a decision about dinner after a day of dealing with all of this? I have large notebooks detailing medical history, medications tried and discontinued, hospital and testing paperwork, feeling and safety plans, school meetings and 504 paperwork for the schools and everything together should we need another hospital stay—for either or both children. Medications—over the counter and prescriptions—are kept under lock and key and we continually change that key’s hiding place. I haven’t slept through the night in 3 years, because I wake up in a panic and have to check each child and make sure they’re still breathing. We have to turn away from regular relationships with family members who won’t make the healthy choices with us or respect our boundaries, at the urging and with the support of our mental health team. We have to do verbal emotional check-ins with our children and process where they are and how to continually handle regular life situations better. We are continually expecting our children to meet expectations in society and school, while empowering them with healthy strategies to do so at the same time. We spend all of our resources trying to get to the best therapists, clinics, doctors, and medications—which are all very expensive—and most of whom don’t take insurance, because insurance won’t pay them enough. Mental health professionals, especially those for pediatric and adolescent patients are all in great demand since there are simply not enough going into the field. Our mental health systems are woefully inadequate to meet the needs of those who need them most. Money is a huge factor in the quality of mental health care, and those with less resources get so much less help, training, and support. And families suffer silently because of it. We live in crisis mode for so long that we forget what is normal, age appropriate behavior. We fear completely letting our guard down because we know how bad it can get and how quickly. We don't ever want to miss another warning sign again.

Want to know one of the worst things that happens to us and our children when one, or multiple children, receives a big, bad mental illness diagnosis? Silence. Avoidance. Distance. We know then that you are judging us and our parenting, that you are afraid of being around our children, and that we are too much trouble and too much risk for you to really get to know us or stay in relationship with us when we are too empty to have anything to give back to you and can't carry our share of the load. We experience family members raking us over the coals about our decisions. We have experience friends telling us what all is wrong in our family when we are just trying to vent and just needed someone to listen. We share in our support groups with tears and bitterness how we never hear from friends any more—even really good, long-term friends. We do notice when you never reply to emails or instant messages, you never text or call us anymore, and invitations to birthday parties, holiday functions and social events stop coming. We don’t receive invitations to hang out with other families or couples any more, and we watch our children be treated differently in their youth group or by ministers. We see you on Facebook, Twitter, and Instagram as you post about pictures of gatherings with friends and parties—with all of the people who would have included us in the past, but no more. People we miss. People who we thought would never abandon us.

Parents of children, teens, and young adults struggling to get on top of a mental illness grieve. We grieve a lot, and we grieve hard. We grieve the loss of innocence. We grieve the loss of a childhood. We grieve the death of our dreams and expectations. We grieve for the life we had before and that our lives will never be the same again. And we grieve the loss of all of the people who no longer wish to have any contact or relationships with us. We grieve the loss of sleep, peace, and trust. We second guess, worry, and re-evaluate everything in our lives again and again. We grieve because we can't fix, solve, or love away the problems our children face. We grieve for our healthier children who can become casualties as the child in crisis must receive attention 1st and may sometimes dictate life for the rest of the family.

I want you to know that we lay our lives and our hearts bare in all of our rawness with all of the professionals treating our children, and we do everything they recommend we do. We read books, blogs and websites. We attend workshops and trainings. We all receive counseling as individuals, a family, and as couples. No stone left un-turned. We will do anything for our children.

Now you, dear reader, have had a taste of our lives raising children with mental illness diagnoses. What I want you to DO now that you have more awareness? Educate yourselves. Talk to your children about warning signs and help them develop an action plan so if they are experiencing any of the symptoms, or they see warning signs in a friend or family member, they know exactly who to call and what to do. Call a friend who struggles with depression and encourage them to go grab a coke with you. Hug a mom at church whose child is cutting themselves and ask her how you can pray for her. Drop off a meal or a restaurant gift card to a family who has a member hospitalized in an inpatient mental health safety. Provide childcare so these parents can get a date night. Say the words associated with mental health regularly, so that they do not remain societal taboos. Say the name of an individual who lost the immediate battle by killing themselves. Don’t let their names and memories be lost. Don’t judge them or attribute their suicide to selfishness, which is never a factor in an attempted or completed suicide. Don’t judge their parents. If parents knew what to do and how to prevent a suicide attempt or completion, they would have done it many times over.

And remember. Please. Individuals diagnosed with some form of mental illness are normal people experiencing a difficult time, who need an open mind, caring attitude, and helpful support. Their parents need these things also as they shoulder the burden and responsibility of caring for a child often misunderstood by people, systems, and establishments in a life that no one would choose.

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