I can see how hard this is for you. I know you are struggling. But I also know you can work through the OCD.Chapter 6
Supporting Your Child’s Treatment
There is a chapter in the The OCD Workbook (Hyman & Pedrick, 2010) called “OCD is a Family Affair,” and that couldn’t be any more accurate. OCD shapes your child’s behavior, and therefore, it impacts you—the parents—and the home environment. Often, it impacts relationships with extended family and the child’s experience at school and socially. As mentioned, family accommodations play a key role in the child’s OCD experience, as parents get roped in and typically become a part of the neutralizing rituals.
When it comes to supporting your child’s treatment at home, there are two phases: The first is how to help her before she has received CBT treatment, and the second is how to support her once she is receiving treatment. Ideally, your child’s therapist will help guide you and give you specific strategies to use while your child is challenging her OCD. These phases speak to the likelihood that you will not abruptly discontinue the accommodations; rather, you will gradually reduce them as your child progresses through E/RP.
Tips for Supporting Your Child: Prior to Beginning Treatment
What happens when you are trying to get everyone out the door in the morning and your child with OCD is stuck on taking his socks on and off over and over again, until the bottoms are aligned and “feel right”? The repeating behavior is causing a delay, and everyone may be late for school. What happens when this occurs on a morning in which you started out waking up late and have less time? It is in these moments when parents (understandably) lose their cool and can react negatively to their child’s struggle. Even parents without OCD in their home can find themselves yelling and getting frustrated with delays in routine. When it comes to OCD, you have to start with acknowledging that every day has built-in obstacles. These built-in obstacles must be anticipated, planned for, and worked through. First and most important, you have to center yourself and empathize with your child’s struggle. Using the socks example, can you imagine how incredibly frustrating and unsettling it must be to not be able to get your socks to feel right on your feet? For them to not look the right way or feel the right way, and all you want them to do is to be even and the same as each other, and yet you cannot get it right? Start with empathy! When you express empathy, and show that you get it, then your child knows that you are “with him,” and this supports the team approach that is needed for this to work effectively. A comment such as, “Are you trying to get your socks to feel right? You must feel so frustrated right now,” can take you far. Once your child has the language of OCD and understands the triggers, you can add: “Honey, I think your OCD has been set off” or “I think you are OCDing.”
Once you have communicated empathy, you can then work on problem solving. Before he has received treatment, your objective is literally just to get through the trigger, and this will naturally require some accommodation. You can encourage him to take the socks off and calm down for a minute to interrupt the ritual and get his focus to shift onto something else. This alone can help reset him; however, many times you will not be able to get him to stop the behavior at all (e.g., he is trapped in the cycle of doing it over and over, with the typical tunnel vision that makes “getting it right” a prerequisite to doing anything else). The next option is to negotiate with the ritual. In this example, you can ask him to set a time limit on how many more minutes he will try to get the socks right before you give up and find another alternative (different socks, no socks, wear shoes that don’t necessarily need socks, such as Crocs or Ugg-like shoes). By working with him in this way, you are acknowledging his struggle but are also reinforcing the idea that he has to stop the cycle at some point in order to function and proceed with the day. Also, by approaching it with empathy and problem solving in a collaborative way, you will avoid the power struggle and blow-up argument that this situation can often result in. If you know that socks are a daily struggle for him, be proactive and plan ahead the night before by talking with him about the time it takes and that you have some ideas to go over with him. Offer to set a time limit for say, 3 minutes, and if at the end of the time he still hasn’t found a way to wear his socks, then he needs to come up with an alternative (e.g., no socks). I know that this socks example is overly simplistic and that your child may take 2 hours to get dressed and may never be “ready” to walk out the door, but it is useful for illustrating how the process works.
When you can anticipate a trigger, you have a head start on planning how your child will get through it. The harder challenge occurs when something unexpected triggers him and he becomes set off into the cycle of OCD; because there is no “convenient” time to be disrupted by OCD behaviors, you have to be prepared for these times by rehearsing in your head that you will (1) start with empathy and then (2) problem solve collaboratively with your child in the moment. It also goes a long way for you to plan and anticipate that triggers will happen suddenly, that you won’t always understand why the trigger is a trigger for him, and that it will cause an interference in your day. Before you move into formal therapy, you want to join your child and help him navigate his way through the triggers. To summarize, until the OCD is treated: empathy FIRST, problem solve second. At this phase, the problem solving will involve accommodations on your part.
Accommodations
In terms of accommodations, even when your child is not yet receiving treatment, you want to work on scaling back on what you are doing in service of her OCD. All parents of children with anxiety end up accommodating it, and therefore unintentionally reinforcing, or strengthening it. With OCD, the tendency to accommodate is ever greater. And the accommodations lead to more family stress and worse OCD for the child. It’s worth repeating that although parents and other family members make accommodations out of love, warmth, and compassion (and usually a bit of desperation), it makes the OCD stronger and results in a worsening of symptoms. When you provide the requested reassurance (e.g., when you answer “no” to her question “Will I get sick from touching that?”), it gives more power to the OCD and OCD thoughts that breed doubt. Essentially, if you are expending time and effort to answer the question, it gives validity to the question. Similarly, if you are spending so much time helping her clean a surface repeatedly, redo hair over and over, or check something 10 times to be sure it won’t cause a fire, it strengthens her already-strong thought that these things are necessary and reasonable to do. Reassurance and participation in the rituals validates the OCD and makes your child’s OCD worse, even though in the moment, it makes her feel better and relieves her distress. In the moment, it leads to relief but, again, this is short-term relief only (and long-term OCD).
Phasing out the accommodations will require you, the parent, to tolerate the discomfort in your child that comes from not doing the accommodations. When you don’t do the accommodation or provide the reassurance, your child’s anxiety will increase, and this is where you need to tolerate her discomfort (this will be particularly true during the E/RP work). Although parents do not cause anxiety, the way they respond to it can influence it, in good or bad ways. Any scaling back or limiting of the accommodations you make will benefit your child. I recommend that you share that you are reading this book and are learning about how accommodating the OCD only makes it worse and leads to more stress for the child and for the family. Explain that you will be working with her to minimize or reduce some of the accommodations that you (and other family members) have been doing, and that you will be there for her to help manage the discomfort. You can still support her emotionally, but not give into her requests or demands to accommodate. Using the getting dressed example, let’s say that the ritual is for your daughter to have completely smooth hair in a ponytail, and you accommodate by spending 45 minutes doing her hair, taking it in and out of the ponytail until it is “perfect” and smooth. You would start by having a discussion about how this is an OCD ritual and that you need to start to decrease the time you devote to this ritual: “So let’s keep track for 3 days to see how long it’s taking us, and then on the fourth day, I’m going to reduce the time that I’m available to help you with your hair by 10 minutes (or 20% of whatever time it is taking).” This is a great way to start reducing your participation in the OCD. It’s not an abrupt change, but more of a gradual, planned one. This scaling back should be slow but steady: Pick two reasonably manageable changes to make and then a few days later, add a few more. If your child gets activated or overwhelmed, you can stay at the level of accommodation for a few more days, but then start to scale back again. Most importantly, try not to regress and go back to doing the accommodations you already gave up. For example, let’s say that you reduced the time you were willing to devote to getting her hair “right” to 10 minutes. Even if one day, she gets incredibly distressed and wants you to spend more time, try to resist this. Explain that you have 10 minutes and no more than 10 minutes, and that’s the only amount of time you are willing to serve the OCD. Point out that she was able to do it in 10 minutes yesterday (always cite previous progress whenever possible), and can do it again in 10 minutes today. Increasing it to 15 minutes will only cause a regression, and realistically your efforts won’t lead to getting her hair “right.” OCD can be relentless and becomes the priority for your child, taking so much time from her life. If you join in this, then the OCD is in control. Your resistance is the way you are taking back control of your life, and your child’s.
Tips for Supporting Your Child: Once Treatment Has Begun
The second phase, when your child is receiving treatment for the OCD, involves a greater push to completely stop the accommodations.
Once your child is in treatment, the goal is to completely discontinue the accommodations and any participation in your child’s rituals. Essentially, your child cannot overcome OCD unless you and other family members stop serving it by doing the accommodations. Being firm and unwilling to accommodate should be easier for you because your child will have support from her therapist and will have learned numerous strategies for dealing with the OCD (tools in her toolbox). It’s also helpful to remind yourself that making all of these accommodations and assisting her with the rituals has not been an effective approach to dealing with the OCD: It has only served to maintain or worsen the OCD. You must take a new approach: You want to transition from doing the accommodations to creating an environment at home that is consistent with E/RP. Instead of accommodating, avoiding, and providing reassurance, your actions and reactions will now be in support of the E/RP approach. In the second phase, the plan will be clearer for you because: (1) you will receive guidance from the therapist, and (2) you will be more willing to stop the accommodations because you know your child is receiving outside support and also learning strategies to overcome the OCD. You will be guided by the ladder steps (using the hair example above, steps on the ladder would be “Mom spends no more than 2 minutes putting your hair in a ponytail,” and “Do your hair on your own”), which require you to not participate.
When it comes to slowing down, minimizing, and stopping the accommodations all together, you need to know what to do instead. It’s not just about stopping it; it’s about replacing the accommodations with a more helpful approach, one that keeps you connected with your child and positions you to help support her in fighting the OCD. Here are some ideal responses that you can use in the moments when your child is triggered. Instead of engaging with the OCD, you will engage more directly with your child’s struggle to fight it:
I can see how hard this is for you. I know you are struggling. But I also know you can work through the OCD.
Even though it may not feel like it, you can handle this.
Remember, it’s supposed to be hard when you don’t give in. But stay with it and it will soon get better. The urge (or the anxiety) will lessen and eventually goes away.
I know you want me to answer your questions, but I can’t talk to the OCD. I can talk to you, but not the OCD.
If you do the ritual, you will feel better, but the OCD will get worse. You have to deal with not feeling better right now and wait it out. This is how you fight the OCD. This is how you get stronger and it gets weaker.
You were able to do this before, so you have it in you do to it again.
It’s only the OCD talking. Stamp the thought! Stamp it “OCD”!
I see you’re really having a hard time. Let’s take a moment and try to calm your body. Let’s do the one-nostril breathing.
You’ll never feel “ready” to do this—you just have to force yourself to deal with the discomfort, which starts out worse and will soon get better.
Think about what someone without OCD would think. What would they do?
Be proactive and let your values guide you. Your decisions need to be in support of fighting the OCD.
Because your refusal to participate in the OCD will increase anxiety in your child, things will become more intense, temporarily. Keep the word temporary in your mind, because it will allow you to have a greater range of what you can tolerate in terms of distress in your child. You have to temporarily get through the discomfort in order to come out on the other side. Dealing with OCD in your child is always an emotional experience, but when you are doing the E/RP work and eventually refusing to participate in her OCD, the emotionality will increase. It is essential that you manage your own reactions (frustration, anxiety, helplessness) when helping your child in the E/RP challenges. If you respond to her struggle with frustration and anger, it will make it worse. Think about it: We know that stress makes OCD worse, so the more stressful the environment (even if that stress comes in reaction to the OCD behaviors), the more stuck the child will feel. Her OCD symptoms will get worse, and she will feel even more committed to doing the rituals to try to experience a sense of relief. If she is stuck in putting her socks on and off over and over, she is already activated; if her parent starts yelling and screaming at her for doing this and for being late, and so on, she will become even more attached to doing the ritual to seek the relief that comes from getting her socks on the right way. I truly get how parents feel this way—the behavior is nonsensical, redundant, and can feel maddening to witness—yet these feelings need to be dealt with and managed effectively and cannot become part of the child’s experience with OCD. Instead, you want the struggle to be between her and the OCD (not her and you); let the process of facing her fears unfold for her, and make yourself in the background as a loving and supportive, yet strong in your commitment to not do any accommodations, parent. Basically, stay as calm as possible and keep some distance between you and her OCD; be a bit detached from her process of OCD. The goal is to stay connected with and be supportive of her, but not the OCD.
Parenting Styles
The best parenting style is the “authoritative” one, which is when a parent has high warmth and high demand (Baumrind, 1971). Authoritative parents show empathy and warmth yet do not compromise on their values or give into the child’s anxiety. For example, if an anxious child doesn’t want to go to school, the authoritative parent would respond with, “I understand you don’t want to go, and it’s making you feel anxious, but you cannot miss school—you know you have to go.” The other types—permissive and authoritarian—are commonly seen in parents of children with OCD and anxiety. The permissive type has high warmth and low demand (“I know how hard this is for you; you can stay home today”), whereas the authoritarian type has low warmth and high demand (“I don’t care how you feel . . . you are going to school”). Many times you will have one parent who is permissive and one parent who is authoritarian. The permissive parent sees the authoritarian parent as harsh and cold, and the authoritarian parent sees the permissive parent as weak and too soft; when this combo happens (which is common), they each become stronger in their parenting style in response to the other’s approach. The good news is, when working with parents who have this combo, I inform them that they are both using the wrong style! The permissive parent needs to have more demand, and the authoritarian parent needs to have more warmth. You cannot just have one; you have to have both. You must become an authoritative parent! In a two-parent family with a child with OCD, both parents need to adopt the same style of authoritative parenting. This is the parenting style that you can have confidence in, as it is the best style and approach for parenting a child with OCD.
Fundamentally, authoritative parents rely on their values, not their feelings, when making parenting decisions, including those pertaining to the OCD. Using values as a guide for decisions is the same as being proactive and, as explained in Chapter 4, we want your child to be proactive as well. Therefore, when you learn to be proactive, this is a good model for the child. In fact, you can point out that by not giving into the OCD by making accommodations, you are modeling for him to not give in as well.
In summary, the difference between the two phases (before treatment and during treatment) is about your willingness to accommodate the OCD. Also, once your child is in treatment, you will still give empathy and problem solve, but most of your involvement will be to cue him to use his strategies and fight back against the OCD.
During both phases (before treatment, during treatment), it is essential that you are positive and encouraging, and also reinforcing the right messages to promote a sense of resilience in your child. Resilience is not letting obstacles stand in our way and having the belief that no matter what comes our way, we can handle it. OCD presents a huge obstacle in your child’s life, and knowing that he can face his fears (through E/RP) and overcome it offers a most meaningful opportunity to become resilient. You can help him with this by framing the OCD as a challenge to be overcome (rather than a “why me?” approach, which only serves to make your child feel disempowered and like a victim). We cannot control the fact that your child developed OCD, but we can control the outcome. Knowing that one can control the outcome in his life is referenced as having an internal locus of control. Someone with an internal locus of control has self-efficacy and believes that he can affect his experience in life—he can change the outcome. The opposite of this is an external locus of control, which is when the control is outside of the person; no matter what he does, he can’t change the situation. We want to encourage an internal locus of control: Even if in the moment we cannot impact the situation directly (the outcome may sometimes not be that different even with this mindset), we can still change our experience of the situation. By thinking a different way and adopting a positive attitude, we can get through it and not be that impacted. What we tell ourselves during the rough times in life has an enormous influence in how those rough times are experienced. You can watch two people going through the same obstacle, with two totally different experiences and two different long-term outcomes as a result.
Siblings and Family Members
Siblings and others in the home will also feel the impact of the OCD. It is important for siblings to have purposeful one-on-one time with each parent to help them process what it is like for them to have a sibling with OCD. Interestingly, the same approach of empathy first, problem solve second, works with your other children as well. Validate what it is like for them, how much time and energy the sibling with OCD takes and requires of you. Normalize the fact that sometimes in a family, one member needs more tending to, and that this is only temporary. Empathize with what it feels like to be in a family where a member has a diagnosable psychological problem; ensure that they know it is treatable and that many families have a member with an anxiety disorder. Then work with the non-OCD child on problem solving; for example, develop a plan so the non-OCD child is not late for school because of his sibling’s OCD and knows what can he do if he is in a public place when his sibling is triggered. Problem solving at the specific level can go a long way in helping your other child feel that he has a plan to cope. He also might require guidance from you when it comes to what he should say and do in response to the OCD and specifically, what happens when he gets roped into the symptoms or ends up participating in accommodations. Assuming he is old enough (older sibling of at least 10 years old), your other child needs to be trained to respond in the same way you do to the reassurance-seeking and request for accommodations; he, too, needs to scale back and ultimately eliminate the accommodations, and he needs to learn what to say instead. In the next chapter, we will go through case examples, including a few in which siblings were included in the treatment process.
Similarly, extended family, especially those living in close proximity, may require some psychoeducation about OCD and your child’s symptoms. They may need to be coached on how to respond, including what to say to support your child and not shame her in any way. Many times, extended family will be able to identify another relative with OCD, and sometimes that OCD was untreated or the person has suffered for years without effective treatment. It is essential that you draw a distinction between that person and your child who is receiving empirically supported treatment (CBT) and as a result, will have a different (better) outcome. The goal is to ensure that your child is not overly pathologized by well-meaning relatives.
Social Implications
When it comes to your child’s social experience, OCD can cause an interference in several ways. Practically, your child may miss social events or social opportunities because the OCD symptoms prevent her from leaving the house or getting to the event on time, or the event itself could be a trigger. For example, a sleepover party might put her at greater risk for getting sick (contamination type). Going to a movie with friends may elicit her fear of seeing “inappropriate” (sexual) content. Being near a swimming pool may trigger her urge to ensure that no one runs or slips and also her desire to keep surfaces dry and safe. Any social situation that is avoided should be integrated into the ladder. She may decide to open up to one or two friends about her OCD, and this can make engaging in social events more likely because it offers a bit of a crutch (which is fine in the beginning if it encourages her participation). Although most friends will be supportive and kind, some may not respond as favorably. Some children will not know what to say in support (e.g., some may ask a lot of question, that cause your child to be uncomfortable), or others may pass judgment and distance themselves. Ideally, you can help your child select which friend(s) to tell, and you can prepare your child for how it might be received and what to say in response if it doesn’t go well. For example, if a friend doesn’t know what to say in response to your child’s disclosure, you can prepare your child on how to move the conversation on to another topic. Role-playing what to say in response, including how to be assertive if someone acts in a judgmental way (e.g., “I was hoping that you’d be understanding, but I see that’s hard for you. Let’s talk about [or play] something else.”), will allow your child to feel more confident about disclosing to others. The overarching goal is to help your child get her social needs met. The more connected she feels, the better off she will be.
Teachers may have a hard time with being understanding or granting extra time when it is warranted; this is largely due to a lack of awareness of OCD and, specifically, how it affects the child. For this reason, you or your child’s therapist may need to advocate for your child’s rights in school (to get accommodations such as extra time when necessary). Note that these types of accommodations are entirely different from familial accommodations that involve participation in rituals, etc. Teachers (and other school faculty such as the school counselor) should be told about the OCD diagnosis when the symptoms are interfering with the child’s participation in class. Explaining the cycle of OCD is a great place to start. Then give examples of what triggers are coming up in school. For example, a child with OCD who is leaving class several times during the day to use the bathroom may be misunderstood to be a behavior problem (someone who doesn’t want to stay in class or do the work), and it is important to clarify the urges, compulsions, and so on.
Without giving every detail or compromising your child’s privacy, providing a few examples of how it manifests in school is necessary for both preventing your child from being punished (penalized) for OCD symptoms at school and for helping her work toward overcoming the OCD (it is useful for your child’s school environment to give the same messages as she receives at home regarding facing her fears or delaying the rituals, etc.). Regarding the latter, in an ideal situation, the school counselor and teacher can be trained to cue the child to use her strategies while in school. Your child should know that the teacher(s) and school counselor understand OCD and are there to help her, and that they know she is working hard to overcome OCD. A teacher can cue by saying something privately (in a whisper) to the child about limiting bathroom trips: “I know you feel like you want to go right now to wash your hands, but can you try to hold off for 5 more minutes?” For the child who keeps writing and erasing and rewriting over and over, the teacher could say, “Let’s take a break from this and work on something else for a bit.” A school counselor could be available to do some calm breathing or do a quick “stamping it OCD” exercise for the child who is really activated and anxious at school. This kind of support can go a long way in helping your child. However, some kids may feel embarrassed or shamed by this, and if that happens, then the teacher should not be as direct, although the school counselor should always make her- or himself available when possible. When the environments at home, at school, and with extended family and close friends are in sync in that they encourage facing the OCD and fighting the urges, your child will benefit enormously and receive the support he needs to see the OCD as OCD and do the work involved with fighting it. I have had teenage clients who have shared about their OCD with close, loving friends who have actually cued them to use their strategies (“Read your cards; you don’t need to wash”) or provided a reality-check (“You’re OCD-ing; you don’t need to keep checking with me, it’s fine). Although this is not the norm, it is a good example of how the environment can support your child in the struggle to overcome OCD.
Parental Modeling
Finally, modeling healthy behaviors can help your child gauge what is appropriate, for example, when it comes to handwashing, cleaning, being thorough, etc. Siblings, too, can be helpful in modeling non-OCD behavior for everyday kinds of things. For example, a sibling may put her homework in her backpack and then go up to bed, showing her sibling with OCD what is reasonable in terms of being prepared (whereas the child with OCD may check six times to make sure his homework is in his backpack). However, this needs to be done in a gentle, nonshaming manner. If you are a parent with OCD, then you can explain to your child that you are not the best model for handwashing, but that _____(fill in the blank with someone who is) is a good guidepost. Helping your child to find the right balance by stating rules with confidence (“We wash hands after the bathroom, and sometimes before meals and sometimes after meals when we are messy.”) is beneficial.