Getting Family Members on Board With TreatmentEn Español
Kids do best when all the adults close to them are working together
It is never easy to acknowledge that your child has a serious mental health issue and then to take the difficult step of seeking a diagnosis and treatment. In an ideal world, parents seeking care for a child would have the support of family members, other caregivers and their child’s teachers. But the reality is that it’s not unusual for parents to be second-guessed and criticized by people close to them. In some cases, extended family members or caregivers will even speak inappropriately to the child about their diagnosis or treatment.
Rachel Busman, PsyD, head of the Anxiety Disorders Center at the Child Mind Institute, works with children who have selective mutism, an anxiety disorder that makes them unable to speak in school and other settings outside the home. When all the adults close to the child work together, specialized therapy is very successful in treating it. But treatment can be derailed when the child gets mixed messages. Dr. Busman hears reports of grandparents who say things like, “She’s just shy. She’ll grow out of it. You don’t need that hocus pocus. She just needs to buck up.”
The other problem, she adds, is that family members may misinterpret the child’s inability to speak as a form of defiance, and conclude that parents just need to be tougher on their kid.
The same thing applies to children with other mental health and learning disorders.
Skepticism on ADHD
“We often see this with ADHD, where people in the extended family say the kid just needs to try harder, he isn’t putting forth enough effort,” says David Anderson, PhD, the Director of National Programs at the Child Mind Institute. “The relatives tend to see kids in leisure activities, like watching TV or playing on the computer, where their focus is fine. They don’t see them in school, so they invalidate the difficulty they’re truly having there.”
Skepticism may be especially aggressive when medication is involved, Dr. Anderson adds. “One of the difficulties for ADHD is that medication is one of the frontline treatments, so all the stigma that goes along with psychiatric medication is something that parents have to hear about, even though ADHD medication is among the most researched and the safest when monitored by a child or adolescent psychiatrist.”
Cathy Lord, PhD, an autism expert at UCLA, says pushback from family members is a “huge problem” with young children on the spectrum, for whom early diagnosis and treatment are crucial. “Often the first reaction of grandparents, and friends, too, is, ‘Oh no, no, he’s so cute.’ How can that possibly be true?’ ”
“A common impulse, Dr. Lord explains, is to reassure the parents that the behavior they’re seeing is nothing unusual. They’ll say, ‘Your father didn’t talk ‘til he was six’— which is probably inaccurate, given how unreliable our memories are — ‘And look at him now. So why are you making such a big deal?’ ”
And even more troubling are family members who blame the symptoms on the parents: “ ‘He’s just spoiled. If you didn’t give into him all the time, he’d be fine.’ ”
How to help family members get on board
Parents may be dissuaded from engaging in treatment — whether it’s therapy or medication — because people in their lives are telling them their child’s disorder is not real or treatment is a waste of money. Sometimes these attitudes are generational, and sometimes they can be cultural. Whatever the reason, getting the other adults in your child’s life on board with the diagnosis and treatment plan can be important to the success of treatment. Here are some tips for how to do that.
It’s important for parents to prioritize. How important is the skeptic they’re dealing with to the child? If he is not, minimizing interactions may be your best option. If you do overhear him saying something that makes your child uncomfortable you can always say something to reassure her — “You know that’s not what we believe, right?” In the case of family members like grandparents or siblings who play an important role in your child’s life, the answer is usually yes: It’s worth sitting down with that person and having a real conversation.
Write out a script
Dr. Busman recommends that parents write out a script or “talking points” before heading into what may be a potentially emotional conversation. Then get the person alone. “You never want to do this conversation in front of the kids,” Dr. Busman says, “because then Aunt Suzie loses face, or the grandparent loses face.” Have a piece of paper with you that you can refer to — things the clinician shared with you that you want to explain.
Practice what you want to say
Knowing what you want to say and saying it can be two different things, so practicing your talking points out loud can help you be more confident and comfortable discussing the diagnosis, notes Dr. Lord. “We advise parents to practice it five times before you go in. “
Lead with gratitude
Dr. Busman tells parents to begin the conversation by telling the grandparent or aunt or caregiver how grateful you are for the role they play in the child’s life. “Lead with the positive and lead with gratitude,” she says. So, if you’re talking to your sister, you might say, “You are such a great aunt. You mean so much to my child. I know you might not agree with the treatment I’ve pursued for her, but we really need you to support what we’re doing.”
Explain the diagnosis
As clearly as possible, explain the diagnosis to the family member or caregiver. Giving some concrete examples of the behaviors you are seeing can help, too. What’s the difference between a typical child and the behavior you’re seeing?
It’s important to say to the person, “I know you care about my kid and I want to hear what you think.” If you listen, then you get a lot of information about what the person does or doesn’t understand or what their concerns about treatment might be. You need to find out what their issues are in order to address them.
Outline the treatment
Whether you’re doing behavioral therapy or medication, explain the basics to your family. This can also be an opportunity for you to discuss specific goals you are working on in treatment and ways that you (and your family) can help reinforce those goals. If you’ve seen some positive results, share that progress with the family member.
“We tell parents all the time, tell your child what you want them to do rather than what you don’t want them to do,” Dr. Busman says. And that same idea applies to the people in your child’s life. “Don’t give people a bunch of things not to do. Give them a few tips of things they can do.” A lot of grandparents or caregivers or teachers who have different parenting styles will get on board if you just help them know what they’re supposed to do, such as how to praise and reinforce the behaviors your child is working on instead of responding to negative behavior.
Share the tools you’ve learned
Share the specifics of what you’ve learned from your child’s clinician and the skills you’ve been practicing with your child. Many of these skills will be unfamiliar to them. So, Dr. Busman says, you can say something like, “I’ve learned so many really helpful tools. Here are some of the tools I’ve learned.”
When in doubt, blame the therapist
When dealing with a skeptical person, Dr. Busman argues that it’s okay to put the “blame” on the therapist. You tell the person, “the psychologist said you need to stop talking like that, because it’s not helpful.” Many therapists are open to communicating directly with extended family or caregivers. “I’ve done Skype calls,” Dr. Busman says. “I’ve emailed with a person. I’ve had mom come in with grandma.”
You could also point them towards some reliable resources online. “If a child has a learning problem or an attention problem,” Dr. Busman explains, “the grandparent or the caregiver could find out some more specific details of what the child’s diagnosis or what their academic challenges mean so they understand it.” The Child Mind Institute has a large archive of articles about therapies and medications and how helpful they can be for kids when the clinician determines they’re needed. Other helpful sites might be Understood for kids with ADHD or learning disabilities, the Selective Mutism Association, the International OCD Foundation, the National Eating Disorders Association or Autism Speaks. Your child’s clinician may also have a fact sheet or particular resource that she recommends.
Protect your child
Sadly, there are some situations in which no matter how hard you try, you simply can’t get through to the adult in your child’s life. If that relationship is harming your child or undermining his treatment, you have to be prepared to distance your child from that unhealthy influence. “I worked with a family where the mother’s sister was saying really inappropriate stuff to the kid,” says Dr. Busman. “It was very devaluing of his anxiety, was making the mom feel like she was a really bad mom. It was very judgmental and really hurtful.”
In that case Dr. Busman took a firmer approach than usual, advising the parents to tell the aunt, “we’re not going to be able to see you if you’re speaking in this way, because it’s actually damaging.” But since ultimately everyone involved in the child’s life just wants what’s best for her, there’s usually a way to help the relative in your child’s life come around.