NAMI NC/CHILDREN/Insights Fall 2002

Young Families INSIGHTS
February 2003
Linda Swann, NAMI NC Young Families Program Coordinator, Editor
Linda Buzard, Layout Manager

Paradigm Shift – Emotional/Mental Disorders in Children and Adolescents

By Linda Swann and Diane Weaver

The following is a comparison of the old and the new ways of looking at the challenges families and their children with mental illness/brain disorders face. We now know these disorders are biologically based, no-fault brain disorders. The research establishes that clearly. We also recognize that parents are not to blame. We still have a long way to go but aren’t we glad that outcomes for our children and adolescents are improving!

OLD PARADIGM	NEW PARADIGM
Behavior is learned from parents. "Acting out" is response to inner conflict from early childhood, double bind, reliving of trauma, plea for attention. Children are too young to be diagnosed with mental illnesses.	Behavior results from sensory overload, distorted perceptions and mood, inflexibility, anxiety, low tolerance for frustration, tics, "limbic storms," low impulse control, low executive functioning, poor short-term memory, difficulty w/handwriting, coordination. All are glitches in brain development, not learned. These are no-fault brain disorders. Child has "good days" and "bad days" with fluctuation of symptoms as w/other physical disorders.
Parents need to learn how to be "nontoxic," to stop causing the child’s bad behavior. Parents are too permissive and coddle the child.	Parents must have extraordinary parenting, behavior management and coaching skills; be knowledgeable about the disorder, medication management, behavior monitoring, self-care. Family support is critical to avoid parental exhaustion, isolation, stigma.
Whole family needed therapy to change from dysfunctional to functional. Parents had unwittingly rewarded bad behavior.	Cognitive Behavioral Therapy for learning about the challenges of the illness, rehearsing coping skills, learning stress-reduction techniques, "shades of gray" thinking, and gradually reducing anxieties. Importance is placed on learning to manage the illness.
External reinforcers – attention seeking ….	Racing thoughts, obsessions, compulsions, tics, mixed mania, and perhaps, "voices," are powerful internal reinforcers.
The "WHY" of behavior did not matter, just consequent it. "Tough love" approach.	Positive behavioral intervention involves learning the "why" of the behavior – its triggers and antecedents – and interrupting the behavioral spiral before loss of control. Proactive.
The child is "manipulative," finding it rewarding to make others angry. Child misbehaves to get attention.	The child is too overwhelmed to "manipulate." He wants desperately to be like other children but is unable. Still needs consequences and restitution.
The child is reacting to a real situation. He/she is able to comprehend everything that is going on and react appropriately.	The child reacts to perceived danger in situations where others feel safe. May interpret ambiguous social behavior as threatening; may look in mirror and see a fat person when very thin, etc.
"Provider-driven systems" where family is seen as part of the problem, not participating in treatment, not asked for input about child’s behavior. Provider is expected to "fix" problems in child or family.	"Consumer-centered systems" with family as part of treatment team. System of Care (wraparound services) with family having expert knowledge to contribute and participate fully in treatment decisions. Strength-based, community-based, outcome-driven.

REACHING OUT & SUPPORTING FAMILIES

By Diane Weaver, NAMI NC Western Region Education Coordinator

The following list is based upon experiences in the Asheville-Hendersonville area over the past several years. This is what has worked in our semi-rural environment.

First contact:

Go to them. Their home may be a good spot to meet, or they may feel more comfortable at a fast food restaurant or quiet café. If it’s at their home, your kids and their kids might be able to play together while the grownups talk.

Stress "peerness." Peer support goes both ways. By letting a new family know your family struggles, that you don’t have all the answers and often need support yourself, you establish a dynamic of trust and empowerment.

If possible, meet each family individually before meeting together with others. Since people usually wait until a crisis to seek support, there is a lot to go over right away. As a bonus, you will learn what capabilities and skills they bring to the group. If they can’t come to meetings, their story will remind you of at least one other family you can enlist to provide phone or email support.

Strategize. Help get a handle on an urgent situation by thinking through priorities, goals, alternatives and resources together. Having a plan or strategy is the first step toward solving a problem, and immediately reduces stress.

When in doubt, ask: "What support do you need?" "What information do you need?" Or. . . (if preparing for IEP or treatment team meeting) "What are the three things you want to have accomplished when the meeting is over?" Or . . . "What do you need me to remind you of?"

Group support meetings:

Meet in an upbeat setting. We are weary of schools, mental health centers, and church basements. A restaurant or a home meeting place lets us feel less needy and more festive.

Remind. Phone reminders increase attendance. Our families lead hectic, unpredictable lives, and it’s easy to forget.

Delegate small jobs. With responsibility spread around, more come and feel ownership.

Don’t be discouraged by low attendance. Enjoy the ones that do show, even if only a single person. Make the most out of this precious time together. Fluctuation in attendance is a natural phenomenon.

Protect group time. Make sure every meeting has ample sharing time. Limit outside speakers to 10-15 minutes.

In general:

Listen, listen, listen. Zipper those lips shut! Perk up those ears!

Affirm (not necessarily the same as "agree"). I can affirm and trust your wisdom about your family’s unique situation even if I don’t thoroughly understand or agree. Always affirm. Don’t try to "fix."

Accept and respect different life styles, educational levels and financial means.

Allocate time. Make sure everyone gets a fair chance to share. Do not allow one or two vocal people to dominate.

Celebrate together. Rejoice in achievements. Cheer one another on. Have fun and laugh! This makes it safe for when you need to . . .

Grieve together. Sometimes a situation is seemingly hopeless, and what the person needs is validation of their profound loss, their many efforts, their weariness, their fear for the child’s future, and their powerlessness over mental illness.

Always have hope. We have a ground rule that each person’s sharing time must end with a note of hope.

Share educational meetings and holiday celebrations with the NAMI North Carolina affiliate. This strengthens both groups.

Let the kids play together. Schedule some low stress, active family outings.

I hope other groups will send in success stories that share outreach and support strategies that have worked for you in future issues of Insights.

Year 2002 Tax Benefits for Parents of Children with Learning Disabilities

From ScwabLearning.org: "If you have a child with a severe learning disability, you may qualify for valuable tax benefits. If your child has AD/HD, or other physical, mental or emotional impairment, you may also qualify for tax benefits. Because tax laws are complex, and many tax preparers often do not have occasion to use these unique tax benefits, families are at risk of losing refunds worth many thousands of dollars. This guide provides a brief summary of the most significant tax benefits and should not be considered legal advice."

http://www.schwablearning.org/articles.asp?r=684&g=2

Positive Behavioral Support

Positive Behavioral Support (PBS) Programs are making headway in North Carolina schools. PBS is a systematic approach that establishes and reinforces clear behavioral expectations. It is team-based, involves the entire school staff, and is built on a positive approach to discipline. Over fifteen schools in our state are currently participating in PBS in some fashion and the outcomes are very good. Attendance has gone up; number of suspensions is down. Fewer students seem to need IEP’s because other supports/approaches are working. Read on.

Provide advance organizers/pre-corrections. Pre-corrections function as reminders by providing students with opportunities to practice or be prompted about expected behavior before they enter situations in which displays of problem behaviors are likely (Colvin, Sugai, Patching, 1993). For example, a teacher states the following: "Remember, before you go to homeroom to collect all your materials, put your work on my desk and quietly line up," or ask, "What are your responsibilities before you go to homeroom?"

Keep students engaged. During teacher instruction, students go "off-task" because (a) the instructional activities do not maintain student attention, (b) insufficient positive reinforcement is being provided, or (c) students access positive reinforcement from other activities or individuals. The teacher's task is to maximize academic engagement and success for all students in order to support appropriate behavior and to compete with factors that encourage problem behavior (e.g., peer or teacher attention, task avoidance or escape).

Provide a positive focus. To promote desired student behavior, teachers should communicate high and positive expectations, have more positive than negative interactions (e.g., four positive engagements for each negative interaction), catch problem behavior before it escalates or becomes more severe, provide high rates of positive reinforcement, etc.

Consistently enforce school/class rules. If all students are expected to engage in appropriate behavior, rule definitions, positive reinforcement, rule violation consequences, etc. should be the same for all students at all times.

Correct rule violations and social behavior errors proactively. The application of error correction strategies should be conducted in a "business-like" manner, and attention for the problem behavior should be minimized. For low frequency and intensity rule violations, teachers should provide a brief signal that an error has occurred, indicate what the desired behavior should have been, and follow-up with the established consequence. Error correction strategies will be more effective if students first are taught what acceptable and unacceptable behaviors look like and what consequences are likely to follow each. For chronic rule violations, strategies should be established to pre-empt future occurrences of the problem behavior and to increase the probability that the desired or expected behavior is likely to occur.

Teach and plan for smooth transitions. Teachers should never assume students will know what behaviors are expected during transitions. Successful transitions are associated with (a) teaching clear expectations for student behavior, (b) establishing clear expectations for staff behavior during transitions, (c) preplanning transition implementation, (d) following transition routines consistently, and (e) providing regular and frequent acknowledgements for successful transitions.

(Source: www.pbis.org)

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