NAMI North Carolina Insights September 2004

Young Families INSIGHTS

September 2004

Linda Swann, NAMI NC Young Families Program Coordinator, Editor

Title

Content

"What Helps Students with Neurobiological Brain Disorders (NBD)"

Suggestions from BethAnn Russell

Keep an eye on students for possible crisis situations. One day I ran into a bathroom in a panic. No one checked on me. I was suicidal but decided I did not want to die in that place.

Positive reinforcement goes a long way. These students need encouragement and the focus placed on their strengths. They are often gifted and talented.

Teachers who are flexible are a terrific help. ("Come to art class when you can make it.") They gave me hope, a connection to the outside world.

Added stress creates problems for the student. The student loses the ability to focus and cannot concentrate well. Ruminations are a problem.

Watch tone of voice used and volume. Students can be very sensitive to tone used and react negatively.

To critique work, offer suggestions. Do not say, "You didn't do this right." The student already has low self-esteem and could start negative self-talk ("I did it all wrong.")

With the very young elementary school aged to high school students, communicate openly and often with parents. Parents have to become strong advocates for their children. They often have to help educate others about brain disorders in children and adolescents.

Children with mental illness often cannot trust their own thoughts. They are frightened. With no sense of reality, they can easily become angry and frustrated. It is exhausting having to analyze everything you see, hear, and smell. They go through this every waking hour, just to try and determine what is real and how to properly react to situations. The worse these children are doing, the harder these basic things are to determine.

It is best to create a "safe environment." Students need help regaining control sometimes. If you need suggestions as to how to do this, ask them. For some people it can be as simple as stepping out of the classroom for a moment to get fresh air. (Coaching relationship)

There are some things a student with a mental illness just cannot do. Emotions can block thinking. A student who has a thought disorder cannot think in certain ways. This can interfere with problem solving. Most of the time they see things very "black and white". They need encouragement that everything will be OK. Reassurance is a good thing. Teachers can offer options. If students need to, they can do extra credit to improve their grades.

Be discreet. Please don't single them out in front of classmates.

Teachers and administrators have a responsibility to put an end to bullying. These children are often the targets of bullies. They do not pick up on social cues and are often unaware when someone is a threat to them.

Educate the entire class on mental illness that it is a disorder like any other physical illness.

Fight the stigma of mental illness every chance you get. The media often promotes stigma and stereotypes those who suffer with mental illness. For example, they misuse the term "schizophrenia" as someone with multiple personalities.

Use self-talk/rehearse, prepare. Sometimes, when trying to act appropriately, different emotions get mixed up. A student may inadvertently laugh when a situation is actually very sad. Also, we can always remember when we were happy. This is not so easy for a student with serious emotional disorder.

Siblings have problems, too. BethAnn's sister decided to be open with her friends about her sister's disorder.

Questions and Answers with BethAnn Russell

Question: "How do you filter out what is unreal from what is real?"

BethAnn: "It gets better with age as one learns to live with the disorder. Have someone you can ask - reality checks."

Question: "Do other senses become stronger in response to disability, as in thought disorder?"

BethAnn: "Yes, senses are often heightened, some colors are brighter and some are duller. At times my senses get mixed up.for instance seeing sounds. I am very sensitive to the feeling of clothes on my skin. I often experience a startled response or anticipation that is uncomfortable."

Question: "What other challenges did you face in school?"

BethAnn: "Cafeteria noise. It altered my perception and made me feel trapped. To help, I used head-phones with a soothing sound. It helped filter out other noise. Wearing hats and glasses, to hide my eyes when having a bad day, was useful. It helped me focus better by blocking out external stimuli. Doodling in class helped me stay focused. Eye contact can be difficult. I get distracted right away by changes in facial expression."

Question: "How have you developed coping skills?"

BethAnn: "Over time I found certain coping skills, some suggested by medical professionals, that proved helpful. Other skills I personally developed through learning about my illness and myself. By doing this I can take therapy and apply it to different situations and mindsets."

Question: "You've done a fantastic job educating us. How did you get to that point?"

Colleen, BethAnn's mother: "We have always talked openly about the challenges of living with the disorder and stressed that this is an illness like any other. These youth just need a lot of support. Getting involved with NAMI helped. Never be ashamed. Parents need to hear repeatedly that it is not their fault."

BethAnn: "The diagnosis was a relief. My problem had a name and I knew I was not the only one and not alone. There is still incredibly high stigma with brain diseases. I felt as though, by hiding my illness and my story from others, it seemed like I was ashamed or had done something wrong. If people act ashamed, it will only worsen overall stigma. To help socially, let your friends know you have a brain disorder."

BethAnn Russell is twenty-three and hears voices all the time, even while on medication for schizo-affective disorder. She was diagnosed as a young teenager. Her mother, Colleen Russell, is NAMI North Carolina's Family Representative in Moore County and past-president of NAMI Moore County.

BethAnn is a frequent co-presenter of "Understanding Serious Emotional Disorders in Children and Adolescents," NAMI North Carolina's workshop for child-serving agency personnel. She especially enjoys speaking to groups of teachers. They always have high praise for her ability to articulate so well what it is like for students with mental illness.

Update from NAMI North Carolina's Annual Conference 2004:
The State of Children's Mental Health

What exactly does a diagnosis mean? Why does the diagnosis change? How does the doctor choose what medication to use? Dr. Suzanne Vogel-Scibilia, MD, addressed these questions during our annual spring conference this past April. Dr. Vogel-Scibilia is a psychiatrist from Southwest Pennsylvania and a member of the NAMI Board of Directors. She has bi-polar disorder as does her teenage son who is one of five children.

So what does a diagnosis mean? According to Dr Vogel-Scibilia all diagnoses are only "syndromal classifications," a cluster of symptoms. We do not know what causes these neurobiological disorders (NBD) in children. The diagnosis only describes what the doctor sees and what behaviors/symptoms a child's family reports.

All children's diagnoses are "diagnoses in evolution." The most helpful information for a doctor to have is a family history. Also important is how family members have responded to medication and treatment. Back in 1850 the first question physicians asked concerned this family history - what type of mental illness has been present in the family. Hopefully, we will see a resurgence of this approach.

Why does the diagnosis change? Dr. Vogel-Scibilia said "We only see what we see when we see it." In other words, symptoms and warning signs are "moving targets." The illness evolves as the brain continues to develop. Psychiatrists often see a line of progression with these disorders (clusters of symptoms). A child with ADD, the Inattentive Type, may go on to develop Social Phobia and later, depression. Panic attacks may precede Oppositional Behavior Disorder and even psychosis. The mood swings of Bipolar Disorder often begin with a depressive episode.

How does the doctor choose what treatment or medication to use? Should one choose therapy or medication or both? Dr. Vogel-Scibilia said a combination of therapy and medication is the most effective. To select a medication, doctors should target the symptoms. They normally start with the less risky medications. The long-term effects of psychiatric medications are still unknown in children.

Dr. Vogel-Scibilia also spoke to the recent controversy over anti-depressants in children. She said that sometimes bad outcomes can lead to a "passion" about a topic like this. What we really need and should demand is good data from reliable sources. Medication remains the most easily accessible treatment option we know.

Having a shortage of providers is a real problem. Pediatricians are having to step up and fill in the gaps. Follow-up care is critical as is closely monitoring children when they try a new medication.

We also need well-designed research by talented professionals who have no financial interest in the outcome of the data. Children are receiving help late when they are more symptomatic. Depression and suicide are very real concerns. We have to offer these young people hope. As Dr. Vogel-Scibilia so aptly stated, "Every family deserves the right to a well-informed decision."

Fact Sheets Now Available On-line

The NAMI North Carolina Young Families Program now has the following fact sheets available on-line at NAMI NC / Children (http://www.naminc.org/children3.htm) or by mail by calling the Helpline at 1-800-451-9682:

Anxiety Disorders (Including Obsessive-Compulsive Disorder)

Asperger's Syndrome

Attention Deficit (Hyperactivity) Disorder - AD(H)D

Bipolar Disorder in Children & Adolescents

Co-occurring Substance Abuse and Mental Illness in Youth

Youth Depression

Fact sheets include information on brain biology, symptoms, treatment, classroom applications, advice for parents, and resources.


Question:	"How do you filter out what is unreal from what is real?"
BethAnn:	"It gets better with age as one learns to live with the disorder. Have someone you can ask - reality checks."

Question:	"Do other senses become stronger in response to disability, as in thought disorder?"
BethAnn:	"Yes, senses are often heightened, some colors are brighter and some are duller. At times my senses get mixed up.for instance seeing sounds. I am very sensitive to the feeling of clothes on my skin. I often experience a startled response or anticipation that is uncomfortable."

Question:	"What other challenges did you face in school?"
BethAnn:	"Cafeteria noise. It altered my perception and made me feel trapped. To help, I used head-phones with a soothing sound. It helped filter out other noise. Wearing hats and glasses, to hide my eyes when having a bad day, was useful. It helped me focus better by blocking out external stimuli. Doodling in class helped me stay focused. Eye contact can be difficult. I get distracted right away by changes in facial expression."

Question:	"How have you developed coping skills?"
BethAnn:	"Over time I found certain coping skills, some suggested by medical professionals, that proved helpful. Other skills I personally developed through learning about my illness and myself. By doing this I can take therapy and apply it to different situations and mindsets."

Question:	"You've done a fantastic job educating us. How did you get to that point?"
Colleen, BethAnn's mother:	"We have always talked openly about the challenges of living with the disorder and stressed that this is an illness like any other. These youth just need a lot of support. Getting involved with NAMI helped. Never be ashamed. Parents need to hear repeatedly that it is not their fault."
BethAnn:	"The diagnosis was a relief. My problem had a name and I knew I was not the only one and not alone. There is still incredibly high stigma with brain diseases. I felt as though, by hiding my illness and my story from others, it seemed like I was ashamed or had done something wrong. If people act ashamed, it will only worsen overall stigma. To help socially, let your friends know you have a brain disorder."