According to the National Institute of Mental Health, a government agency dedicated to medical research, at least half of all cases of lifetime mental illness appear before age fourteen. The National Alliance on Mental Illness says 1 in 5 children between the ages of 13 and 18 live with a severe mental illness. Parents who are raising children with mental illness must contend with social stigma, lack of psychiatric support, and a dearth of appropriate interventions. Yet we hear very little from those parents and kids who are struggling except when the cases are outrageous and tragic. I brought together two moms who are parenting children who are mentally ill and who are out-spoken advocates for greater support and information.
Chrisa: I’m Chrisa Hickey. I’m mom to three kids and legal guardian to a fourth. My oldest is 23, and our biological kid. Our next is Tim, 19, adopted at birth, diagnosed Pervasive Developmental Disorder at 4, Bipolar at 8, and Schizoaffective at 11. Our daughter is 18, adopted at age 4. She has Reactive Attachment a Disorder and epilepsy. I am also guardian to E, 17, who is a precocious teen diagnosed with Bipolar Disorder. I blog about parenting kids with mental illness at www.themindstorm.net and I co-founded a Facebook support group for parents of children with brain-based challenges that currently has over 600 members.
Julia: I’m Julia Roberts and mom to two kids with special needs, including a boy teenager at 14 and a girl preteen age 11, who have an array of differences including mental illness. A vision disorder they share, our girl has an additional vision disorder, they both have kidney disease (ARPKD) which led to kidney transplants at age 8 and a liver disease (congenital hepatic fibrosis), learning disabilities and our son has a depression with suicidal tendencies, Post Traumatic Stress Disorder, anxiety and ADHD with severe impulsivity. I co-founded a site for families touched by special needs, www.supportforspecialneeds.com, where people come to share, gain insight and hopefully laugh.
Dawn: What are the greatest challenges parents of children with mental illness face?
Chrisa: The biggest common theme I see for families is that they either can’t find doctors to help them, or can’t get doctors with any experience/expertise in treating children. 50% of all persons with mental illness start showing symptoms before the age of 14 (per the National Association of Mental Illness), and there are less than 7,000 child psychiatrists. Unless you live in or very near a large city, finding a doctor who has experience with childhood onset mental health issues could be a 4-6 week wait. If you’re suburban or rural, forget it—you might be 100 miles or more from the one in the area.
Julia: I’ve generally found that people are afraid to treat complicated kids. In addition, for us, there was a fear of doctors for mental health because we didn’t want to be judged on what we were or weren’t doing. We literally stumbled on our current doctor when we had to admit Gage because he was suicidal. We consider ourselves lucky.
Chrisa: If you have a child in crisis, you need a bed in a decent facility. It’s not uncommon for a parent to post to the support group that they are messaging us from their phone after 3 or 4 DAYS sitting in an ER with a wildly unstable child, waiting for a bed. The availability of beds on psychiatric units has been rapidly declining over the past two decades. If you can get a bed, you can’t get your insurance to cover it unless your child is in “imminent danger.” For some reason, preventative care is all the rage for insurance companies, except when it comes to mental healthcare.
Julia: Our doctors that deal with the organs and body often clam up when we discuss Gage’s mental health. When Gage was suicidal and we were begging them for help they basically said they couldn’t do anything. They didn’t even have a list of doctors who might work with complicated kids. Same with our pediatrician. We basically were on our own to find our own help.
Dawn: Can either of you speak to prejudice you’ve faced from parents of typical kids? What do you want these parents to know about your and your kids’ experiences?
Julia: It’s really difficult to see adults treat my son differently. I’ve had to approach adults about their bias and in several cases, completely cut them off. In a lot of cases the adults were raising kids that also treated my son unfairly.
We were very fortunate to have a few families who were willing to encourage their kids to befriend my son. He had one special friend through the worst times. Laura accepted Gage the way he was in all of his wonderful oddness; this happened because of her parents. They showed compassion towards Gage and Laura followed suit.
Chrisa: I remember when Tim was eight he wanted to play tackle football, really badly. So we decided that he could if my husband could be at practice every day. We were up front with the coaches and other parents about Tim’s condition, and I can’t say they weren’t nervous, but they didn’t let on. Tim made friends with the other boys on the team and they had a great year. The following year the league made sure to put him back on the same team. The plays were getting more complicated, but the kids got in the habit of the boy playing the position next to Tim giving him instructions as they set up on the line—they figured that out all on their own.
Julia: When Gage had his most horrific time a school administrator asked me not to blog about him because they were worried the kids would hear parents talking about him and then take it out on him at school. While I very seriously did consider not blogging about his mental health (for a few days) in the end I decided to keep blogging and told them that students and parents were already talking about Gage and I wanted to share the story and the truth.
I learned at the time there were parents approaching the administration requesting our son be removed from the class he was in and the school all together. Luckily, our principals were supportive of Gage and his quick return to school and routine after his admittance into a psychiatric hospital.
Dawn: What do you most want people to know about your children?
Chrisa: I think I’d want them to know my kid is a kid like any other kid. And when you get to know him, he’s a pretty cool kid. Just ask the kids that have gotten to know him. Those boys never let Tim’s “oddities” stop them from being his friend. Even as they got older and Tim couldn’t play football anymore (too much anxiety, not stable enough), they still fist-bumped him in the hallway at school and did boy scouts together. We moved away from that town when Tim was about 12 but he has kept in touch with a few of those boys. They always say, Tim is their friend; he’s not his “quirks.” I learned from that. We are very up front with Tim’s diagnosis. People are often taken aback—he’s not the stereotype they expect.
Julia: The thing I want most from parents of kids around my son is to be open. Be open to hearing about the issues we have and encourage your child to be open as well. Kids need friends and connection. When a friendship happens between a child with mental illness and a typical child a special thing happens between them. For the child that is different it means validation and comfort and for the other child it means they have a personal experience getting to know someone with gifts that few people see. Our son really saves his best self for those who accepted him for him.
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