Tag: family support

Outlook for schizoaffective disorder and schizophrenia

Outlook for schizoaffective disorder and schizophrenia

How Schizoaffective Disorder compares to other disorders

There is little information about schizoaffective disorder in children, which usually starts around puberty.  As a parent, you know how seriously it affects your child, but how does it compare to depression and bipolar (manic and depressive states) and schizophrenia?  What is the course of schizoaffective disorder, and how can you help your child’s future?

Schizoaffective disorder is not as serious as schizophrenia,
but more serious than bipolar/depression.

Research conducted in Britain* studied young people who received typical treatment for schizoaffective disorder, schizophrenia, and bipolar/depression who were between the ages of 17 and 30 (average age was 22).  Over a 10 year period, those with schizoaffective disorder improved slightly, better than those with schizophrenia.

Behavioral functioning over time for schizoaffective disorder, schizophrenia and affective disorders (depression, bipolar) at four consecutive follow-ups.  (This scale goes from 2 (good) to 6 (poor). A “1” would be the level of a person with no symptoms and who is considered normal.)
*M. Harrow, L. Grossman, Herbener, E. Davies; The British Journal of PsychiatryNov 2000, 177 (5) 421-426

Behavioral functioning is measured by how well a person does in five areas:

  1. Work and social functioning
  2. Adjustment to typical life situations
  3. Capacity for self-care
  4. Appearance of major symptoms
  5. Number of relapses and re-hospitalizations.

Your child will struggle with these, but there’s good news according to a recent landmark study:
Family support improves a patient’s outcome.

Life with a schizoaffective teen,” tells my story, and what steps I discovered which worked to improve my daughter’s functioning and behavior.  This article also provides insights into how children with schizoaffective disorder think.

A new treatment program was developed that altered some well-established practices.  A set of schizophrenia patients received the following support and were later compared with those who had the usual medication approach.

  1. Dosages of antipsychotic medication were kept as low as possible
  2. Help with work or school such as assistance in deciding which classes or opportunities are most appropriate, given a person’s symptoms;
  3. Education for family members to increase their understanding of the disorder;
    (“Efforts to engage and collaborate with family members are often successful during an acute psychotic episode, whether it is the first episode or a relapse, and are strongly recommended.
    Family Involvement Strongly Recommended by the American Psychiatric Association)
  4. One-on-one talk therapy in which the person with the diagnosis learns tools to build social relationships, reduce substance use and help manage the symptoms.”

Patients who went through this for of treatment made greater strides in recovery over the first two years of treatment than patients who got the usual drug-focused care. More here.
New Approach Advised to Treat Schizophrenia, Benedict Carey, New York Times, Oct. 20, 2015

“..if you look at the people who did the best—those we caught earliest after their first break with reality—their improvement by the end was easily noticeable by friends and family.”

The longer psychotic symptoms stay in an extreme phase,” in which patients become afraid and deeply suspicious,” the more likely the person will be vulnerable to recurring psychosis, and the more difficulty they will have coming out of it and adjusting to normal life.

How to help your child

Be very realistic about what your child can handle in school.  They may be extremely intelligent–but maybe can’t handle too much homework; or class disruptions; or lack of empathy from the teacher.  A parent or school counselor should help your child find low-stress classes or activities, and consider limiting the number of classes per day.  They can only hold it together for so long! I found it helped my schizoaffective child to take later classes, starting at 10 or 11 am.

Get the whole family on board to make his or her life easier.  Your child might be stressful and a source of irritation for everyone, but family members can help reduce this by taking on the chores your troubled child would ordinarily do; avoid pressuring them about something, or anything; and allow your child to say oddball things without confronting them about how irrational they are or arguing with them.

DIY talk therapy – Here are some ways to guide your child out of their troubled states.

Anxiety

  •  Schizoaffective kids may express anxiety in a tangled web of seemingly unrelated things, and spike them with paranoia about what they mean. Listen carefully, and conduct a gentle interview to explore what truly is bothering them.  It may be as simple as the room being too cold.
  • Give them plenty of time (if you can). A venting session is sometimes all they need.
  • Diplomatically redirect a negative monologue with a comment about something else more positive. This is where it’s useful to hand them a cat or call over a dog, offer tea or juice, or briefly check email. The point is to break the spell.

Run-on obsessive thoughts

  • Voices and thoughts can be angry, mean, and relentless. Your child may not tell you this is happening, or may simply assume you already know what’s in their head.  Ask him or her if thoughts or voices are pestering them.  If so, show indignation at how wrong it is for them to mistreat your child, “that’s not right that this is happening to you; this is so unfair to you; you deserve better; I want to help if I can…”
  • Encourage your child to ignore the voices/thoughts and they may go away, or encourage them to tell the voices/thoughts to leave them alone. “I refuse to listen to you anymore!”  “Quit pestering me!”   “Back off and leave me alone, you jerk!”  Negative thoughts and voices are just bullies.

Help your child stand up to thought/voice bullies the same as
as you would help any child dealing with a bully.  Seriously, this works.

Life with a schizoaffective teen,” tells my story, and what I discovered that worked to improve my daughter’s functioning and behavior.  It also provides insight into how people with this disorder think.

Take care and have hope.  You can do this.

Margaret

Faith can help, and harm, a family’s mental health

Faith can help, and harm, a family’s mental health

When faith helps

Most of the time, people can heal and find peace and self-acceptance through faith. All the world’s great faiths, those that have lasted centuries, are kept alive for this reason. All have common themes of healing and service to others. When things go poorly, meditation and prayer, with others or in private, lead to connection and wholeness. Faith reveals that things are better, and will be better, than they seem.

When families are in crisis because of their troubled child, parents tell me they depend on faith, even parents who don’t profess a faith practice. They say it’s their only source of strength. Most families with a child who is sick, disabled, or mentally ill will go through dark times, when a parent’s world is simply too overwhelming. Most often, no answers are forthcoming, nor any rescue. The only choice is to hand over their burden to a “higher power,” God, the Buddha, Allah, the Great Spirit… This act of “handing over” is a foundation of healing in Alcoholics Anonymous, Narcotics Anonymous, and dialectical behavioral therapy (DBT).

Few things help a family more than a supportive community of believers.  There will be one person who listens to a frightened parent on the phone, and another person who takes a traumatized sibling on an outing, and another person who provides hugs and cookies. If a mentally ill child continues to decline, a good faith-based support network will stay on. The child may not thrive, but the family does, and has the strength and forbearance to handle the years’ long task of supporting their mentally ill loved one.

Science shows that faith results in better lifetime outcomes for a child

This writer typically trusts science, but in the depths of my family’s despair, only faith and the prayers of others kept me from falling apart.

There are scientists among the faithful who have asked the question: does faith really help the mentally ill? In another blog post, Spirituality and mental health, some research are summaries of research going back 36 years.  (Follow this link for the research citations.)  The answer?  Yes, faith makes a real and measurable difference in improving mental health.

More recent scientific research shows clear evidence from brain scans that meditation and prayer change brain electrical activity, from anxious or agitated to serene and grounded.  The person actually feels and behaves better.  This article has more information on this, Yoga – Safe and effective for depression and anxiety.

Like prayer, “talk therapy” or psychotherapy also shows improvement on brain scans. Imagine, just talking with someone improves the physical brain. According to the article appended below, “When God Is Part of Therapy,” many prefer therapists who respect and encourage their faith. It just makes sense.

When faith harms

This section is a personal appeal to faith communities who have unconscionably failed families and their children with mental disorders.

Faith communities depend on people, and people have biases and foibles.  Many of ‘the faithful’ hold negative beliefs about others, right or wrong.  Children who suffer, and their families, are identified as possessed, of evil character, disbelievers, victims of abuse, or cruelest:  those who are paying for their sins. Families are repeatedly told these very things today.

“Sometimes, people hide from the Bible. That is, they use the Christian holy book as an authority and excuse for biases that have nothing to do with God.”
–Leonard Pitts Jr., Miami Herald

Stigmatization from a faith community is a cruel betrayal.

A child’s inappropriate behavior is not a choice, it is a verifiable medical illness, one with a higher mortality rate than cancer: Mental illness more deadly than cancer for teens, young adults.  Families with sick children need support; our sense of loss is devastating.

Testimonials

Mother with five children, one with bipolar disorder:

“We were members of our church since we were first married, all our daughters grew up here, but when my youngest spiraled down, I was told the sins of the father are visited on the sons. Or we weren’t praying enough. I knew they thought (Dad) had done something bad to her. We left and went church shopping until we found a pastor who understood and supported us.”

Mother of two children, one with acute pervasive development disorder:

“I wish we had a “special needs” church. We’re so afraid our kid is going to say something and we’re not going to be accepted. We haven’t gone to church for years because of this. They just turned their backs on us, it happened to another family with a deaf child. They avoid parents in pain. Deep down in my heart I believe in the Lord, but there are days when I wonder “where is God?” People call out to pray for a job, or a kid’s grades, but we wouldn’t dare ask for us, no one would get it, we’d be told we were bad parents or didn’t punish him enough.”

Mother of two children, one with schizoaffective disorder:

“When I went up to the front to light a candle and ask for a prayer for my daughter, I expected people would come up afterward and give a hug or something, just like with other families with cancer and such. But it didn’t happen. No one even looked at me. I left alone and decided never to go back.”

Some good news

FaithNet

The National Alliance on Mental Illness (NAMI) has recognized the need for the mentally ill to be part of faith communities, and the negative experiences most face when they attempt to participate in a religious community. NAMI started FaithNet to encourage and equip NAMI members to engage with and share their story and NAMI resources with local faith groups, and appeal for their acceptance.

Key Ministry

Key Ministry: Welcoming Youth and Their Families at Church
Stephen Grcevich, M.D., president, Key Ministry and child & adolescent psychiatry in private practice, Chagrin Falls, Ohio

“Key Ministry believes it is not okay for youth living with mental illness and their families to face barriers to participation in worship services, educational programming and service opportunities available through local churches.”

Churches in American culture lack understanding of the causes and the needs of families impacted by mental illness, which poses a significant barrier to full inclusion.

“A study published recently by investigators at Baylor University examined the relationship between mental illness and family stressors, strengths and faith practices among nearly 5,900 adults in 24 churches representing four Protestant denominations. The presence of mental illness in a family member has a significant negative impact on both church attendance and the frequency of engagement in spiritual practices.” When asked what help the church could offer these families, they ranked “support for mental illness” 2nd out of 47 possibilities. Among unaffected families, support for mental illness ranked 42nd.

________________________________________

When God Is Part of Therapy
Tara Parker Pope, March 2011, New York Times

Faith-based therapy is growing in popularity, reports Psychology Today, as more patients look for counselors who can discuss their problems and goals from a religious frame of reference.

Studies show that people prefer counselors who share their religious beliefs and support, rather than challenge, their faith. Religious people often complain that secular therapists see their faith as a problem or a symptom, rather than as a conviction to be respected and incorporated into the therapeutic dialogue, a concern that is especially pronounced among the elderly and twenty-somethings. According to a nationwide survey by the American Association of Pastoral Counselors (AAPC), 83 percent of Americans believe their spiritual faith and religious beliefs are closely tied to their state of mental and emotional health. Three-fourths say it’s important for them to see a professional counselor who integrates their values and beliefs into the counseling process.

The problem for many patients in therapy is that many patients are far more religious than their therapists.

Nearly three-fourths of Americans say their whole approach to life is based on religion. But only 32 percent of psychiatrists, 33 percent of clinical psychologists and 46 percent of clinical social workers feel the same. The majority of traditional counselor training programs have no courses dealing with spiritual matters.

When children are hospitalized with other ailments, the family draws sympathy and support from others.  But because of mental health stigma, most families like ours don’t when our child is hospitalized.  If not blame, we are second-guessed, or as bad, met with silence or a change of subject.

Good messages for siblings (and parents) of a troubled child or teen

Good messages for siblings (and parents) of a troubled child or teen

Your other children already know something is terribly wrong, and they deserve to hear the truth from you.

Most are old enough. They see other children in school and discover other families are nicer, so they don’t talk about their own. They are afraid to bring friends over to visit because of how their troubled brother or sister behaves–pestering them, upsetting them–then those friends talk about it with fellow students and their own parents. Word gets out about your family and people form opinions, especially teachers.

Siblings also feel unsafe and insecure. They never know what’s going to happen! Tell them the truth and trust them to understand and appreciate your candor.

  • You cannot cure a mental disorder for a sibling.
  • No one is to blame for the illness.
  • No one knows the future; your sibling’s symptoms may get worse or they may improve, regardless of your efforts.
  • If you feel extreme resentment, you are giving too much.
  • It is as hard for the ill sibling to accept the disorder as it is for you.
  • Separate the person from the disorder.
  • It is not OK for you to be neglected. You have emotional needs and wants, too. The needs of the ill person do not always come first.
  • The illness of a family member is nothing to be ashamed of.
  • You may have to revise your expectations of your sibling. They may never be ‘normal’ but it’s OK.
  • Acknowledge the remarkable courage your sibling may show when dealing with a mental disorder. Have compassion, they suffer and face a difficult life.
  • Strange or upsetting behavior is a symptom of the disorder. Don’t take it personally.
  • Don’t be afraid to ask your sibling if he or she is thinking about hurting him or herself. Suicide is real.
  • If you can’t care for yourself, you can’t care for another.
  • It is important to have boundaries and to set clear limits. You should expect your sibling to show respect for others.
  • It is natural to experience many and confusing emotions such as grief, guilt, fear, anger, sadness, hurt, confusion, and more. You, not the ill person, are responsible for your own feelings.
  • You are not alone. Sharing your thoughts and feelings in a support group has been helpful and enlightening for many.
  • Eventually you may see the silver lining in the storm clouds: your own increased awareness, sensitivity, receptivity, compassion, and maturity. You may become less judgmental and self-centered, a better person.

Excerpted from “Coping Tips for Siblings and Adult Children of Persons with Mental Illness,” from the National Alliance on Mental Illness (NAMI), 2001, www.nami.org.