What It's like when Your Child is Mentally Ill
By Chrisa Hickey, REDBOOK.
If you're a mom like I am, I bet your heart aches at the thought of a sick child who needs help. But some illnesses aren't outwardly apparent, and others are so misunderstood they seem downright scary. That's why, during National Children's Mental Health Awareness Week, I'd like you to meet my family.
It might help to first imagine that you have an 11-year-old son, and that he's sick. You're not sure what's wrong, but you know it's serious. Your pediatrician recommends you see a specialist, but when you call the only two in your area, neither one has an appointment available for eight weeks. When you finally get in to see the specialist, he puts your son in the hospital for two weeks of testing and observation, then diagnoses him with juvenile onset diabetes. You know the word, but you're not sure what the prognosis is or the treatment your son will need. The doctor recommends you relinquish your parental rights of your son to the state, as that is the only way to get him the treatment he needs without bankrupting you. Even then, he it is unlikely he will ever have a normal life.
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Now replace the word "diabetes" in that scenario with "schizophrenia," and you'll understand what happened to my family. That was nearly eight years, 12 hospitalizations, three years of residential treatment, and two suicide attempts ago, and I'm sorry to say, it's not an uncommon tale.
According to the National Alliance on Mental Illness, four million children in the United States have a severe mental illness. For several reasons - lack of education on the signs of mental illness for doctors and school personnel, a dearth of psychiatrists that treat children, the stigma associated with mental illness, or the fact that many insurance companies still don't cover mental illness - less than 20 percent of them receive treatment. That statistic on its own is bad enough. Combine it with the fact that suicide kills more children than cancer, diabetes, birth defects, stroke, respiratory diseases, and heart disease combined, and more than 90 percent of children that die by suicide had a mental illness.
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If these kids manage to survive to adulthood, more than 50 percent of them never graduate from high school. The unemployment rate of the mentally ill is nearly 78 percent. That first psychiatrist we saw was correct about one thing. In our current system, the prognosis is indeed grim.
Like other chronic illnesses, mental illness doesn't just affect the child. It is very much a family disease. The primary word many parents like me use to describe our families' lives is "isolating." It's like learning a new language that no one else speaks. Diagnoses all have similar symptoms and change often. The medications have wicked side effects and are rarely tested for efficacy on children. Even school becomes a maze of acronyms like SPED and IEP. You can't discuss it with your friends over drinks, either, because at best, they won't understand; at worst, they will stop inviting you.
If your child has a serious physical illness, family, friends, and neighbors rally around you. When your child needs to see a specialist, your insurance will cover it. But when your child has a mental illness, it's an alternate universe. No one calls. Everyone from family to strangers blames your parenting style. Friends accusingly ask why you drug your child with poison. Insurance won't cover care until he proves he is a danger to himself or others. You get emails with sensational news stories attached that suggest your son needs an exorcism or he may be the next Adam Lanza. The school calls with admonishments about behavior, ignoring the fact he's not learning. Your other children suffer in an environment of unpredictability since friends won't come over, and after-school activities can't be reliably scheduled.
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Instead of ignoring my fight for my son and passing judgment, there are things you can do to help children with mental illness and their families. The outcomes greatly improve with early intervention and treatment. Here's how you can help families like mine:
- Let parents vent without judging.
- Offer to help organize the reams of paper that result from doctor's appointments and special school placements.
- Contact your congressman to urge him or her to push for finalization of the regulations governing the Mental Health Parity Act of 2007, so insurance companies will finally have to follow the law and cover mental health care.
- Remember that kids with mental illness are still kids. They need friends. Teach your children inclusion and compassion for their peers with challenges.
- Stand up to stigma and stop using words like "crazy" and "insane" as everyday adjectives.
- Realize that mental illness is a medical condition. It's not bad parenting, and it's not a character flaw.
- Remember that parents like me, who fight every day to keep our children alive.
Chrisa Hickey is an eCommerce marketing professional, blogger, and mental health advocate specializing in providing education and support to parents of children diagnosed with serious mental health conditions. Chrisa began her journey into the world of childhood-onset schizophrenia when her middle child, Timothy, was first diagnosed at age 11.
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