Hi! Lisa here. In honor of Black, Indigenous, & People of Color (BIPOC) Mental Health Awareness Month, we’re going to focus on what it’s like for parents to raise a child with mental illness, whether they’ve been formally diagnosed or not. Mental illness is common in families across the United States. According to national surveys*, 1 in 6 youth ages 6-17 and 1 in 5 adults have a mental health diagnosis. Many more have symptoms that cause difficulties but don’t receive a diagnosis. That means that there is a good chance that you will at some point interact with a child with a mental health diagnosis or symptoms that interfere with their functioning. In fact, there’s a good chance that child might be your own.
Picture from NAMI Seattle
Coping with symptoms of a mental health diagnosis changes the landscape of parenting. In addition to typical parenting concerns, like keeping your kids safe, fed, clothed, and loved, you have to help them manage symptoms and you may have a heightened level of concern about your kids’ wellbeing. The type and severity of your child’s symptoms will in part dictate the adjustments you will need to make as a parent. However, across the board, you will have to learn new skills, change some things about the way you parent, and adjust your expectations.
Another thing that many parents struggle to accept, especially when you have an older adolescent or young adult, is that your child’s mental illness can extend the time of active parenting. You’ll always be a parent, but at some point, usually by the time your kids are in their early 20s, you get to stop “parenting” and they take over. Depending on what’s going on with your kids, you may have to continue to parent them longer than you expected.
Something Sarah and I hear a lot from the parents we work with is some variation of the question, “Why can’t my kid do ______ yet?” A lot of kids with mental health diagnoses develop certain (not all) skills at different rates than do other kids their age. For instance, kids with ADHD may need assistance with completion of routine daily tasks longer than their friends do. A kid with social anxiety may not ask to have play dates or to go out with friends even though you’ve encouraged them to do so. These types of “delays” can cause a great deal of frustration for parents who expected that their kids would begin functioning more independently. Educating yourself not just about your child’s diagnosis and symptoms, but about how it may affect development gives you some idea about what to expect and can help you adjust your expectations accordingly. This does not mean that your kids are not going to become functional adults- it just means that they will take a different path to get there and that they may need more help along the way. As their symptoms change and treatment progresses, the amount of needed assistance will vary. One thing that can be helpful to work on with a provider is walking that tightrope between assisting your child and enabling dependent behaviors.
One of the major challenges you will face in caring for your child with a mental health diagnosis will be accessing resources and choosing appropriate providers. As a psychologist, I am fully aware of how challenging this system can be. Depending on your financial situation, insurance benefits, region of the country, your child’s diagnosis and symptoms, the available options vary widely, and it can be difficult to find the right provider. However, there are some important things to consider when choosing a provider for your child.
No matter what, make sure you are seeing a provider who is licensed in your state- this means that they have met the qualifications of their profession to provide services and that they have passed the necessary knowledge-based exams. However, having a license does not necessarily mean that a provider will be able to effectively work with your child. It’s important that the provider has expertise in treating your child’s diagnosis/symptoms. For instance, Sarah and I are both licensed psychologists in the state of Florida. While we are fully licensed and have training and experience working with a variety of mental health diagnoses, we would not be the best providers to treat someone with an eating disorder because that is not an area either of us received extensive training in treating.
So, how do you go about finding the right provider? First, don’t be afraid to ask questions. Review the provider’s bio or curriculum vita (CV) to find out more about their background. Schedule a consultation and ask about the provider’s experience treating kids around your child’s age with similar diagnoses/symptoms. For instance, if a provider treats older adolescents and young adults with anxiety, they may know about anxiety but still may not be the best provider for your anxious 7-year-old.
Next, find out whether and how the provider involves parents/caregivers in treatment. Most providers who treat minors keep a level of confidentiality with the child. This means they don’t tell you everything your child says in order to build trust and give your child a space to speak freely. However, they should involve you in treatment, as most interventions for kids need parents to participate.
Once you’ve selected a provider with the appropriate credentials and experience, making sure they’re a good fit for you and your child is important. If you or your child is not comfortable after a few sessions, that may not be the right provider for you- and that’s okay. Most providers know that they are not going to be a good fit for some kids or parents, so they don’t take it personally if you decide to see a different provider. With that said, give the provider a fair chance. Sometimes it takes a few sessions to figure out whether you have the right fit.
Now, the relationship with your child’s provide is a little different than your relationship with other providers. It’s really about give and take. The provider has expertise in the particular diagnosis and how to treat it, but you are the expert on your child. You will know whether an intervention is working because you see your kid every day and you know them.
You are your child’s best advocate until they are in a position to advocate for themselves. Don’t be afraid to speak up if you feel there is something that your child needs from their provider, school, etc. Seeing you advocate for them teaches your kids to advocate for themselves. As they get older and develop more skills, help them to begin to speak up on their own behalf. It’s also critical that you listen to your kids and take their opinions about their treatment into consideration, particularly when it comes to their comfort level with their provider.
Let’s talk a little about stigma. While it’s getting better as people become more open about discussing mental health, there is still stigma about mental illness. In some communities and families, admitting that a child has a problem is seen as an embarrassment, a sign of a lack of faith, or as poor parenting, among other negative perceptions. This makes it less likely that a family will seek care for a child who is struggling with their mental health. It’s also less likely that a family will find helpful ways to address what’s happening. How many of us were ever told by an adult to stop crying, suck it up, pray about it, or just deal with it? How many times did those types of comments work to solve the problem or help us deal with our distress? Maybe sometimes, but usually what happens is that we learned not to talk about our problems and not to ask for help. We have to be very careful about passing that down to our kids- they need to be able to ask for help when they need it.
One of the concerns that often prevents people from accessing care is what other family members will think. If mental health care is frowned upon in your family or community, it can be a real barrier to seeking help for your kids. Deciding what to tell other family members or friends is a legitimate concern that needs to be thought out and discussed. It may not be necessary to tell them anything- some things are none of their business. If you do decide to share information about your child’s mental health care, it’s important to consider what your child wants or, more importantly, doesn’t want people to know. Remember, your child’s mental health is their personal business—and their private health information—and that needs to be respected. So, you asking their permission before sharing their personal business with others is tremendously important, not just to their sense of control of their own lives, but also to your relationship and the trust they have with you.
Something that is often ignored, and that Sarah and I have addressed in a previous post, Love the One You’re With (4/21/2020), is that you need to give yourself time and space to grieve. You need to be able to grieve for the difficulties your child faces as well as for any of your own expectations about your child, parenting, etc. that have had to change.
Something that is being talked about more, but still not enough in my opinion, is caregiver fatigue in parents. As parents, there is still the “expectation” (read: myth) that parents are supposed to have an endless supply of patience and should never complain about the things they need to do to raise their children. This is somehow especially true for parents with kids dealing with mental illness- you’re supposed to have even more patience than other parents and you’re only allowed to express sadness or frustration with the system or with the effects of your kids’ symptoms on your kids. Again, this is a huge, unhelpful myth- even though your child is the one with the diagnosis, you and your other family members are also living with the effects of the diagnosis. And you get to be sad, mad, frustrated, or however you feel about it- or about your child. Recognizing when you’re having negative feelings toward your child allows you to deal with those emotions so that you don’t end up taking them out on your kids, your partner, or yourself. This does not mean that you need to wallow in the feelings, but just like with any other feelings, you need to acknowledge them and find healthy ways to cope.
One way to cope is to make sure that you are taking care of yourself. With everything you need to do to help your child, it may feel like self-care can’t or shouldn’t be a priority. But, that’s not true. In case you missed it, Sarah and I are big advocates of self-care. Finding time to fill your own cup is critical when you are helping your child deal with difficult symptoms. You need time to decompress and take care of your own needs. It’s also important to have a support system. That can be your spouse, friends, other family members, a therapist, a support group of parents helping children with similar difficulties, or any or all of the above. Having people in your corner that allow you to talk about what’s going on and provide helpful support, advice, or just a listening ear is critical. It’s also important to have people in your life who help you to focus on other things, whether it’s a phone call, a hobby or a group of girlfriends you can meet for drinks.
The final thing that helps a lot of the families we work with is reminding yourself that your child and your child’s mental illness are not the same. Connecting with your child may be difficult, but it is so important to set aside time that you can just be together without focusing on their symptoms or treatment. If your child is depressed, anxious, suicidal, etc., it’s tempting to talk to them about their symptoms all the time – checking in, asking what they’re thinking or feeling. While this is necessary at times, it’s also necessary to just relax together so that you both can remember that you have a relationship outside of their diagnosis.
*Statistics from 2016 National Survey of Children’s Health and the SAMHSA 2018 National Survey on Drug Use and Health
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As a reminder, we have an amazing handout for families with information about COVID-19 that you may find helpful when speaking with your kids. Click here to take a look.
Feel free to peruse our blog and see what Sarah and Lisa had to say about topics related to your needs as a busy parent. We will talk about everything from parenting values, to life hacks, to realistic self-care.