Caring for a Kid with Mental Illness or Special Emotional Needs Takes Teamwork

A Team Sport

Helping a kid move toward wellness when struggling with a mental illness or behavioral disorder is a team sport. We need the help of their therapists, prescribers, and other supports.

But what if the team disagrees about a course of treatment?

What if the doctor wants to prescribe a med that you have concerns about? What if you think the diagnosis is inaccurate? What if you think your kid needs a higher or lower level of care but the professionals don’t?

Conflict on our Team

When my son Nicholas had been sick with treatment-resistant depression from bipolar disorder for three years, we reached an impasse with his care team. After five hospitalizations, they were pushing hard for residential treatment. My husband and Nicholas himself were unsure but willing to consider it. I felt strongly (strongly!) that residential was not the right fit for Nicholas.

I need to pause for just a moment here to say:

This post is not about the pros and cons of residential treatment. I believe that for some kids it is the best treatment option and the most loving choice a parent can make.

Our group of caregivers no longer felt like a team to me. Every appointment felt dangerous, like discovering enemies where I had thought to find friends. I needed to trust them; Nicholas’ care depended on them. I truly believed God had provided them in our hour of need. But our serious disagreement about the next best thing put us at odds.

Which way to Turn?

These were not, however, enemies. They were trained, professional, caring people who had known and worked with Nicholas for years. Residential treatment was their emphatically expressed, best recommendation. And truthfully, I feared that my instincts might be untrustworthy after the years of stress.

I was prepared to fight to the death to make sure the right thing happened for Nicholas. But if my instincts were suspect, then I didn’t know what was the right thing.

I had no idea which battlefield to charge. Which fight could end the war?

What do the Professionals Say?

When we were past our crisis years and I began to interview mental health professionals in a quest to help other parents, I asked about disagreements over treatment. 

The Reality of Liability

One therapist explained that sometimes a provider must push for a higher level of care to protect herself:

“Part of it is my own liability. And that isn’t a compassionate answer maybe, but that’s something I’m always running in my background. If I don’t push for this, am I then liable for the safety of this child? If some harm comes to a child while they’re in my care, someone’s coming to ask me questions. Have I presented this treatment option in such a way that I’m covered regarding liability?”

Concern for the Kid

Mostly, though, the providers who have talked to me about this issue say their responses are born from a place of deep concern for the family. One counselor said:

“If I’ve determined they need residential care, that’s a pretty extreme step, so usually there are some reasons I’m leaning in that direction, either for the child’s safety or for the family’s safety. It can be frustrating for the professional who wants what’s best for the child to say, ‘Look you’re putting yourself and your child at risk.’”

Concern for the Parents

Those I interviewed also talked about their concerns about parent guilt, burn-out, and shame:

 “Sometimes (parents) just feel they don’t want to go that route of residential care because they think that means they’re giving up on their child. And that isn’t the case. If it is what your child needs, it may be what’s best for your child right now. Residential care isn’t usually a permanent solution, so it doesn’t mean you’re warehousing your child and you’re leaving them. You’re putting them in more capable supervisory care. They can do that vigilant care without getting fatigued. When their needs are beyond what you can provide as a parent in that situation, then getting them care that actually provides for those needs is doing what you can do as a parent to help your child the best you can.”

One even expressed unease about the role of some mental health professionals in a parent’s distress:

“Mental healthcare providers can be a part of blaming and shaming. ‘Why didn’t you know? Why didn’t you see the signs?’ That can be really tough. When kids are diagnosed with a physical health problem, parents aren’t necessarily getting that heat. Then they say, ‘Clearly, you’re not a doctor, you wouldn’t pick up on thse difficult health signs.’”

Back to the Team

None of the providers I spoke with insisted that they always knew better than the parent:

“The other part is, it can be just a disagreement. The parent might be right. There have been times I’ve recemmended a course of treatment and the parent said, ‘I’m 100% not doing that.’ And I say, ‘Okay. I get that. You’re the parent and I’m not.’ I’m going to honor that, maybe offer for them to go get a second opinion.”

How to Deal with Disagreement over Treatment

  • Request detailed reasoning for why the provider recommends a course of action. What does she see as the pros and cons? There are always cons. Be wary and press for information if your provider doesn’t share any with you.
  • Make a list of what you see as the pros and cons. Talk to the provider about them. Try not to only focus on cons.
  • Assign weight or value to the items on both lists. For example, the con of a medicine causing nausea for a couple weeks is not as weighty as a pro of bringing psychosis under control.
  • If you can, slow the process down. Give everyone time to work through emotions and analysis. In an emergency situation, this may not be possible, so use any skills you have to reach a state where you can consider all information while also honoring emotions and intuition.
  • See if you can get other professional opinions. Your provider should be open to this.
  • Ask God for wisdom, guidance, and unity on the team.

All the items in this list have one thing in common: Communication. Engage honestly, respectfully, and fully with the providers, your kid’s other parent, yourself, and God.

Nicholas’s Team

Nicholas did not end up going into residential treatment. We agreed to enroll him in our state’s Waiver program, which is the highest level of care outside residential. Waiver can provide a faster track to placement in a facility. It was a compromise solution, because it moved him closer to residential. However, during the time it took to fully get him going in the program, his condition improved. As a result of a second opinion, he was able to access a twenty-week program of Dialectical Behavior Therapy. A change in his medication regimen proved helpful. Physical maturity calmed some of the storm. By taking the time to really work through issues with his providers, considering all options and opinions, and being ready to do whatever it took to serve Nicholas’s best interests, his team of parents and providers helped him achieve stability.

What About You?

Have you experienced conflict within the team of people caring for your kid? What issues did you face in working through it? Do you have advice for other parents?