Elaina sits down and talks with Lisa Jamieson from Walk Right In Ministries about family caregivers, the holidays, and ways the church can better support them.
The training, content, gatherings and experiences that we’ve created for pastors, church staff and ministry volunteers produced with the assistance of like-minded colleagues serving in disability ministry have become our principal service. So much of what we’re able do to help churches welcome and support families, we accomplish by bringing together experts from other ministry organizations.
November is Caregiver Awareness Month. As someone who became one of my dad’s caregivers before I started school, I grew up thinking everyone in the world was aware of caregivers and caregiving. As a young adult my husband and I cared for a son born with a life-threatening medical condition, and his typical sibling. As members of the sandwich generation, my brother, sister, and I cared for our mother for 15 years after she was diagnosed with dementia. This explains why, when I first heard that November is Caregiver Awareness Month, I was incredulous, and I still am.
In this episode, Lauren Hickman shares her personal journey and calling to disability ministry, describing how God has guided her every step of the way to serve families impacted by disability.
In today’s episode, Sandra talks about the challenges small to normative-sized churches face in disability ministry and shares how the churches she’s been a part of have overcome these challenges.
Brenda and I were talking about how difficult it is for a teacher to stretch beyond their “success” style and the challenge that the special needs student offers. She asked me to help her with encouraging her teachers on why its important to keep the big picture in mind when working with special needs students. The ideas turned into a letter from a parent to their child’s teachers.
Families in which someone was struggling with a mental illness were very desirous of support from their local churches, but members not exposed to mental health issues were basically oblivious to their needs and the presence of mental illness appears to be an impediment to church attendance and regular prayer.
Since we’re filming a training this weekend on the impact of ADHD on spiritual development, I thought today might be a good time to review some of the impediments to kids and adults with ADHD becoming involved and staying involved at church.
Let’s start by looking at this issue from the perspective of the parent. In all probability, the kids aren’t coming to church if the parent doesn’t bring them to church.
By the weekend, many parents of kids with ADHD are very tired. Kids with ADHD often have a very difficult time getting through their morning routine. They need constant reminders to get out of bed, get dressed, eat breakfast and are easily distracted by the TV, the dog, just about anything. If kids are taking medication, the stuff does take a little while to kick in, so that mornings often become a great source of frustration to parents.
If the parent(s) can get their child up and ready in a reasonable time, the next challenge is the car ride to church. Compared to kids without ADHD, the child with ADHD is more likely to be angry about going to church, more likely to be screaming, yelling or crying because of some perceived grievance about their sibling’s behavior, and the family as a whole is less likely to arrive in a worshipful mood.
A major obstacle is the perception of many parents that they’ll be placed in a situation where they’ll be expected to explain their child’s behavior to others, or where they’ll bejudged by others. Like it or not, there’s a stigma associated with many of the hidden disabilities (while this study from the American Journal of Psychiatry doesn’t address ADHD, it does reinforce the point). I was at a worship service in our church a number of years ago for Disability Sunday at which a couple got up to share their story of what it was like looking for a church with two young boys with ADHD. The mother’s words illustrated the expectations parents of kids with ADHD and other hidden disabilities bring to church:
“People in the church believe they can tell when a disability ends and bad parenting begins.”
Another common complaint I hear from parents whose experience of church has been in denominations or traditions in which children and parents are expected to attend worship services together is that they can’t get anything out of the experience if their primary focus is monitoring their child’s behavior during the service. We’re seeing a growing trend among Catholic churches we serve to offer (at least periodically) separate worship experiences for kids and adults as a strategy for addressing this problem. I’m admittedly apprehensive about the well-intentioned efforts of some in the family ministry movement to discontinue separate worship experiences for kids because I suspect we’d lose many of the families of kids with ADHD who have difficulty with self-control.
Finally, we have the issue of parents who themselves have ADHD. They’re more likely to have difficulty following through on good intentions. They may want to come to church, they may know it’s important for their kids to be involved at church, but they have a hard time pulling things together to make it to church. They’re more likely to suffer from insomnia, or be “night owls” themselves, and struggle to get themselves up in the morning, much less their kids. They have more difficulty with establishing priorities and managing time. I can spot the families affected by ADHD in our church parking lot ten minutes after the start of the last service with Mom hopping across the parking lot putting her shoes on with three kids in tow.
For parents who themselves may have ADHD, the ease and clarity with which a church communicates where to go and what to do when you arrive is especially important. They tend to be easily frustrated looking for parking. They have a very difficult time remembering directions, resulting in the need for signage that is highly visible and processes for checking in and checking out kids that are as simple as possible.
Here’s one more issue to consider: Unlike families in which a child has an autism spectrum disorder, in which divorce rates are no higher than in the general population, the divorce rate nearly doubles in marriages where there’s a child under the age of eight with ADHD. Kids with ADHD are more likely to be alternating from household to household on the weekend, making establishment of a consistent routine of church attendance more difficult.
What about the experience of church from the perspective of the child or teen with ADHD?
Kids with ADHD are often capable of intense focus when they’re engaged in activities they find interesting. In fact, the vast preponderance of the time kids come into my office with a history of wetting themselves during the daytime, their “accidents” occurred while playing a video game or outside in the middle of play with their friends. In many ways, ADHD should be thought of as an attention dysregulation as opposed to an attention deficit…kids with ADHD pay attention to too much stuff, much of which is unimportant, at the expense of what they need to pay attention to.
Kids with ADHD don’t do well in situations when they perceive the activity or the topic as boring or irrelevant, and unfortunately that’s the case in too many churches. I’ve said on many occasions that I believe it’s a sin to bore kids with the Gospel. And that’s exactly what happens when kids are required to sit through worship services designed for adults, especially kids with ADHD.
For many kids with ADHD, especially those with the “H” component, the mental energy required to maintain self-control for an extended period of time takes away from their ability to get the desired “take away” from their church experience. They don’t like sitting for extended periods of time. Many educators are starting to catch on to the importance of movement and exercise on learning.
As kids with ADHD get older, rates of insomnia increase. Many of these kids are “night owls”…they stay up very late because they have a hard time slowing down their brains to settle enough to fall asleep. The problem is compounded when they have to get up very early (6:00 AM in the case of our tenth grader) on school days. By the weekend, getting up and out of bed may be more of a challenge for the teen with ADHD than their friends. One of the wiser moves the leadership made at the church our daughter attends was moving high school worship service from 9:00 AM to 6:06 PM on Sundays. Let’s just say there weren’t a whole lot of kids with ADHD responding to invites from their friends to check out 9:00 AM church!
Here’s another consideration… there are a lot of kids with ADHD who need to take medication to have a successful school experience during the week who don’t have that option available to them on the weekend because of concerns their treating physician or parents have about the effects of medication on appetite and growth. Think about this: If many kids with ADHD require medication for school during the week despite accommodation plans and assistance from teachers with special training, how do you think they’re going to do at church on the weekend without medication and a volunteer leader who lacks a teaching degree?
One of the main points my former ministry colleague Katie Wetherbee makes when training church staff and volunteers is that kids want to be successful. My kids with ADHD often get very frustrated and discouraged and start to see themselves as a disappointment to parents and teachers. Put that kid in an environment in which the behaviors resulting from their inability to maintain self-control may be labeled as sin and see how excited they’ll be about coming back next week!
One final word on the issue of environments…there is such a thing as too much stimulation for kids with ADHD. When kids are struggling with sensory overload…too noisy, too many kids talking, lighting is too bright-they don’t learn and may experience the environment as unpleasant or aversive. Let me share an example…
We’ll call my friend Jake. Jake has ADHD along with auditory processing difficulties. When several people are talking at once, Jake’s experience is like listening to a radio with lots of static. Because of his ADHD, he notices all the different sounds in his environment. One day, I was hanging around in the lobby of the church about five minutes after the start of our second service and Jake comes up to say hello:
Jake: Hi, Dr. Steve
SG: Hi Jake. How you doing?
Jake: Just great
SG: How’s school?
Jake: Really good this year. (Hesitation) Dr. Steve, Can I ask you a question?
SG: Of course
Jake: When I go into my church service, there are too many kids yelling and screaming and talking and pushing…I can’t concentrate on what’s going on. Do you have any suggestions for what I can do?
Jake just had too much trouble tolerating the level of stimulation in the large group worship area that was present at the time. He liked the discussions when he broke out into his small group, so his parents and leaders came up with a great solution. Jake was given an orange vest and made a part of the parking team between services. We had people who drove around the lot looking for Jake on Sunday morning because of his friendly demeanor. He’d finish directing traffic about the time his large group worship was winding down and the kids were getting ready for their breakout groups.
Our current blog series… Dissecting the DSM-5… What it Means for Kids and Families, continues today with an examination of the recently updated diagnostic criteria for Oppositional Defiant Disorder.
Mental health professionals working with kids and families are often asked to intervene when children chronically exhibit angry or disrespectful behavior. The causes of this behavior are often complex, but typically are grounded in two very different biologic predispositions…referred to in the DSM-5 as disinhibition/constraint and negative emotionality.
My problem with the diagnosis of Oppositional Defiant Disorder (ODD) is that establishing the diagnosis doesn’t tell you anything about what to do to treat it. Consider it a “lite” version of Disruptive Mood Dysregulation Disorder without the severe, protracted tantrums or meltdowns.
In the DSM-5, the eight diagnostic criteria for ODD were regrouped into three categories: Angry/Irritable Mood (loses temper, touchy/easily annoyed, angry/disrespectful), Argumentative/Defiant Behavior (argues with authority figures/adults, defies/refuses to comply with rules/requests from authority figures, deliberately annoys others, blames others) and Vindictiveness. Kids are required to have four or more symptoms for at least six months for an ODD diagnosis, criteria have been included to emphasize that the behavior is beyond the norm for the child’s developmental age and specifiers for severity have been included. In addition, kids with ODD may now be diagnosed with Conduct Disorder as a comorbid condition.
Some kids are disrespectful and defiant because of issues with poor executive functioning. They roughly correspond to the angry/irritable group. One way of understanding their behavior is to view them as impulsively defiant…they argue with parents and authority figures without stopping to think about the issue that upsets them or why they’re upset. It’s not unreasonable to question whether this subtype of kids diagnosed with ODD would be better described as having ADHD, with the defiant behavior representing difficulties with emotional self-regulation caused by the executive functioning deficits central to our understanding of ADHD. In fact, one of the criticisms the folks from Shire Pharmaceuticals faced when they sought FDA approval of Adderall XR for ODD was the question of whether ODD was truly a stand-alone diagnosis-since 79% of the kids in their study were diagnosed with ADHD in addition to ODD.
Other kids are disrespectful and struggle with transitions because of their inability to let go of their mental script of how a given interaction or situation should unfold. They correspond to the argumentative/defiant group in ODD. They perseverate or get “stuck” on a picture in their mind of how things should be and escalate when adults violate their sense of control. The first subset of kids is defiant because they can’t stop and think. The second subset is defiant because they can’t tolerate the inner frustration when events unfold differently than they’ve pictured in their minds. We know kids who “ruminate” or perseverate often experience problems with anxiety and/or depression as they get older.
What we do to help is contingent on our conceptualization of the cause of the defiant behavior. If they have difficulties with self-control related to ADHD, we’ll treat the ADHD. If they’re rigid, inflexible and perseverate, we might look at cognitive strategies or behavioral interventions to help. Use of the ODD label adds little to our understanding of how to best help address the behavior that led parents to seek professional help.
Updated January 24, 2016
We’ll take a closer look in this post at the new companion diagnosis to Reactive Attachment Disorder related to pathologic care in early childhood… Disinhibited Social Engagement Disorder.
Studies of children who have been maltreated or raised in institutions have demonstrated two characteristic patterns of emotional response and behavior in response to pathologic caregiving environments. The first pattern involves emotional withdrawal…kids who lacked a preferred attachment figure, failed to respond to comfort when distressed, demonstrated decreased social and emotional reciprocity, decreased positive affect and unexplained fearfulness or irritability. Their symptoms could be described as internalized. This is the group we discussed in a previous post who will continue to be described as meeting criteria for Reactive Attachment Disorder (RAD). In contrast, the second group was observed to demonstrate indiscriminately social behavior-inappropriately approaching unfamiliar adults and a lack of concern for strangers… in some instances, a willingness to wander away with strangers. They may also exhibit a lack of ability to maintain an appropriate sense of body space, and may also demonstrate disinhibition of behavior.
Research has demonstrated that these two patterns differ in terms of clinical correlates, course, and response to treatment. There was also much greater interrater reliability among clinicians using diagnostic criteria based upon the assumption that the two patterns represented separate and distinct conditions compared to the existing DSM-IV criteria for Reactive Attachment Disorder. As a result, the authors of the DSM-5 chose to establish a separate diagnosis of Disinhibited Social Engagement Disorder (DSED) to distinguish the second group from children with Reactive Attachment Disorder. This new designation corresponds to the condition in the ICD-10 referred to as Disinhibited Attachment Disorder of Childhood. Disinhibited Social Engagement Disorder encompasses the vast majority of children and teens we’ve treated in our practice who in the past were identified with attachment disorders.
Here are the criteria for Disinhibited Social Engagement Disorder in the DSM-5:
A. A pattern of behavior in which a child actively approaches and interacts with unfamiliar adults and exhibits at least two of the following:
B. The behaviors in Criterion A are not limited to impulsivity (as in Attention-Deficit/Hyperactivity Disorder) but include socially disinhibited behavior.
C. The child has exhibited a pattern of extremes of insufficient care as evidenced by at least one of the following:
D. The care in Criterion C is presumed to be responsible for the disturbed behavior in Criterion A (e.g., the disturbances in Criterion A began following the pathogenic care in Criterion C).
E. The child has a developmental age of at least nine months.
Specify if Persistent: The disorder has been present for more than 12 months.
Specify current severity: Disinhibited Social Engagement Disorder is specified as severe when a child exhibits all symptoms of the disorder, with each symptom manifesting at relatively high levels.
First, we’ll start by looking at the similarities between kids with DSED and RAD. Both conditions are linked to social deprivation, neglect and pathologic care, and are readily identified among children being raised in institutional settings. Both conditions appear to be relatively stable over time in institutionalized children. But some very key differences exist as well…
We can anticipate lots of confusion because the vast majority of children presenting for clinical care will meet the diagnostic criteria for DSED as opposed to RAD, since DSED is more likely to persist after kids leave pathologic care and causes more difficulties with interpersonal relationships. DSED is easier to observe across settings, especially in schools. I can certainly understand why the name of the condition was changed…not all kids with DSED lack attachments…but I’m not sure this distinction will be recognized by a majority of clinicians for quite some time.
Updated March 1, 2016
