Lately I’ve been working on several cases where the kids involved have had significant mental health issues—issues severe enough that they can no longer remain in the home. The diagnoses are different, but I am seeing other patterns that are similar, and thought I would share some of my observations. Following are the Top 10things I think it’s important to know if you are a parent of a child with significant mental health issues.
- “Great” is a relative term. If a child has cerebral palsy, and the doctor says he’s doing “great,” we know that great means something different for this child than it does for a child without cerebral palsy. Likewise, if a child has a diagnosis of PTSD (Post-traumatic stress disorder), RAD (Reactive Attachment Disorder), BPD (Borderline Personality Disorder)or any other significant mental illness, “great” will mean different things for her. Celebrate “great” when it happens, without comparing it to what “great” looks like in other children.
- There may not be a “magic treatment” that will cure your child of the illness and make him “normal.” If you wait for that before bringing the child back home from a PMIC (Psychiatric Medical Institute for Children) or shelter, the child will never return. Focus on getting to a point where the behavior and corresponding care is manageable.
- While it is often true that no one knows your child better than you do, it is also true that when you are in uncharted waters (such as childhood mental illness), you need to rely more heavily on the professionals. That doesn’t mean you don’t have a say in treatment, placement, etc. It just means that you will need to give up some control in order to get the best possible care for your child. You will need to be humble enough to acknowledge that you do not have all the answers. This takes a team—of which you are a valuable member, but not the only person.
- Most CINA (Child in Need of Assistance) cases involve families where the parent has abused or neglected the child. But not always. Sometimes CINAs are used to help parents access services not otherwise available to them, as in those cases where the child has significant mental health issues. Understand, however, that there are some things required by statute that may not seem to “fit” your case, but will still be required, such as a social history report, for example. This is not DHS “prying,” but rather a statutory requirement. Understand, too, that if, at some point, the court believes you are standing in the way of your child receiving the treatment she needs, the court may transfer “guardianship” or decision-making authority to DHS or a medical provider. The best way to avoid this is to be reasonable (at a time where it’s very hard to be anything but terrified for your child’s future). That doesn’t mean you have to go along with everything recommended without challenging anything. Let me give you another example in the “physical health” world. Let’s say a drug is recommended to your child, but you know he is allergic to that particular drug. You should, of course, speak up and tell the providers that. But let’s say you are refusing treatment because you read an (unverified) article on Facebook that says that drug causes some horrific condition. The first scenario is eminently reasonable; the second is not. That doesn’t mean you can’t ask questions related to the treatment (and what you’ve read), it’s just you should not unreasonably withhold consent for treatment.
- Medication is often prescribed for kids. It’s important to remember that just like medication prescribed for physical ailments, it can sometimes be trial and error. The key is that if one medication doesn’t work, try something else. The answer is probably not “no more medication.” I tell people that even something as minor as a physical wound needs treatment. If you have a reaction to Neosporin™you switch to Bacitracin™. You don’t just ignore it, because it will get infected, and then you have even bigger problems. You try something different. Same thing with mental health.
- Also with regard to medication, know that it is sometimes a trade-off between benefit and side effects, and that the cost/benefit analysis may change as you go through the process. For example, if you start with a medication that makes your child feel like a “zombie,” you may want to try something different. But if you get to a point where the level of aggression is so high that the child cannot actively engage in therapy, or is beginning to receive criminal charges, you may decide to try that medication again, at least long enough to allow therapy to take effect; you can then move away from that medication again.
- Understand that many behaviors are things that all kids struggle with or exhibit, just not at the level your child does. For example, it is normal for teens to begin pulling away from parents on their path to independence. Most will “rebel” in some fashion. Those behaviors are often magnified—sometimes significantly—in kids with mental health issues. Keep this in mind especially as your child approaches adolescence, knowing that what worked when they were toddlers probably won’t work when they’re a teen—which is true of nearly all kids.
- Remember that you can’t protect your child from everything; this is true whether your child has mental health issues or not. You may think that something is a bad idea. You may even be right about that. But sometimes kids have to try things and even fail in order to grow. Instead of telling her (or the professionals) that you don’t want her to try something, help her talk through what that looks like, what has to happen for them to succeed, and identify potential obstacles (and solutions). Encourage her; tell her you are proud of her for trying new things and taking steps towards her goals. This can go a long way towards helping them succeed, but if they “fail,” don’t take the “I told you so” approach. That’s not helpful. Let me say that again—That’s not helpful. Instead, help her see what went wrong, and figure out what to do differently the next time. Help her understand that everyone fails at times—that’s how you grow.
- Sometimes there is both a physiological and behavioral component to your child’s behavior. Although tempting, it’s dangerous to “blame” everything on the physical injury or dysfunction. Certainly that should be addressed, but the physical aspects may be out of the child’s control. The behavioral ones, however, are within his control. The cause of the behavior is important to know in order to treat it appropriately. However, beyond that, it’s important to focus on learning to manage the behavior. The longer this goes unaddressed, the more ingrained the habits and behavior become, and the harder it is to change. Blaming behaviors on things outside the control of the child tends to lead people to do nothing. It’s the “It’s not my fault, so there’s nothing I can do” mentality. Everyone struggles with something in life; but we all have to learn how to get along in this world. I always try to get kids (and parents) to focus on what we can control, even if those are very small things in the beginning. Progress is progress.
- One final word of advice. Threatening lawsuits if the staff or provider does anything you haven’t explicitly approved will not get you the outcome you want. It instead makes the provider hesitant to be candid, and less likely to work with you, out of fear that he might make a “misstep” (in your eyes) that will result in a lawsuit. This, plus your child’s behavior, may begin to make it difficult to obtain placement and care that he needs. The risk is too great for the facility, because despite best attempts, facilities cannot guarantee your child’s safety, due to the high-risk population they serve. This is true whether you are talking about other patients hurting your child intentionally or staff unintentionally hurting him when they have to restrain him. Keep in mind, too, that at some point, it could be your child who hurts another child or staff. This, again, is why I urge people to focus on the behavior that can be changed and managed, rather than blaming something external that cannot be changed (such as an injury). Certainly we want our children protected, and kept safe, but when your child’s behavior has provoked the injury, a threat of lawsuit is not appropriate. I’m not saying your child deserved that response; I am simply saying she (and you) should not be surprised by the response. Unless you have evidence that the injury was intentional, your energy is better spent working with the providers to figure out how to keep your child safe going forward—and that likely includes a conversation with the child about the behaviors that led to the injury, including her actions.
So those are my Top 10 observations. As always, let me know if you have had a similar/different experience, or if you have questions.
This disorder is rarely diagnosed before age 18, but if teens exhibit behaviors consistent with the disorder, they can receive cognitive behavioral therapy or dialectical therapy (help with coping skills, thought processes, etc.)