Parents

& Caregivers

What does it mean to be "at-risk" for psychosis?

In order to answer this question, we must first answer the question, “What is psychosis?” Psychosis is an illness affecting the structures and chemicals of the brain. The three most commonly associated problems are hallucinations (seeing or hearing things that are not there), delusions (beliefs that are odd or untrue), and disorganization (becoming confused and fragmented when attempting to think or speak) Psychotic experiences are fairly common. About 10-25% of people report having at least one such experience in their lifetime. The way to tell if an experience is a one-time event or the beginning of an ongoing problem is to get an assessment from a professional who has experience working with psychotic youth and young adults. When people go for annual physicals, the physician usually runs blood tests to check for early signs of illness. They do this because they know that making changes in diet and exercise in the earliest stages of diabetes or cancer will do more good than waiting until symptoms are causing problems. By the same token, people who immediately get checked for early signs of psychosis have more time to prevent the illness. If you are concerned about a family member’s changes in behavior (the things you can see) or changes in perception (the things that your family member reports to you), early psychosis is one possible explanation. Here is what to look for:

A teenager or young adult who…

  • Hears or sees things that are not really there

  • Believes things that do not make sense (like: “the FBI is watching me”) 

  • Has difficulty organizing thoughts or words 

  • Has difficulty filtering out sights or sounds that are in the background

  • Has difficulty telling the difference between what is real or unreal.

  • Suddenly struggles with school or work that used to be doable

  • Feels uncomfortable around friends he or she used to hang out with

  • Makes big changes in how he or she dresses, bathes, or grooms

  • Loses interest in things he or she used to do with friends (e.g., movies, sports, shopping)

  • Picks up new, perhaps unusual interests that he or she does alone 

 

Being at-risk for psychosis is not the same thing as having psychosis. When people are at-risk, they are more likely to have insight into their symptoms. Sometimes, an assessment will be necessary to distinguish between the two. The assessment should be conducted by a professional that is experienced and well-trained to evaluate youth and young adults for serious mental illness. 

 

You are not alone in this

 

When asked what is hardest for families dealing with a member that is showing early signs of possible psychosis, the answer is not always about the unexplained changes in behavior but sometimes about feeling alone in this fight. If you do not have family or neighbors who can lend an ear or a hand, remember that there are more than 13 million adults and about 2 million children living with serious mental illness. Among them are parents, like the ones below that have chosen to share their stories.

 

Susan Inman is a 65 year old mother of two and former educator who taught English and Drama to middle and high school students for over 20 years. Her daughter, Molly, had her first serious experience with psychosis when she was 15 years old. In Molly’s case, early signs  escalated quickly into symptoms that seemed to rise and fall with her mood. Antidepressant medication was prescribed to help stabilize Molly’s mood, but the hallucinations and delusions continued to worsen. These symptoms were eventually brought under control by finding the right medicine and dose so that Molly could think clearly enough to educate herself about psychosis and put words and meaning to the experiences that she had been having.

 

 Susan’s greatest challenge was not to find the right medication, but to set up an educational plan that would let Molly work towards graduation at her own pace.  After much trial and error, Susan hit on the solution of enrolling her daughter part-time in a community college program that was willing to accommodate her needs. 

 

Today, Molly is an advocate and spokesperson for people with serious mental illness and encourages others to speak openly and get help early.. Molly has not only continued her studies, but has become an avid sportsman who loves to ski, snowboard, golf, and play tennis with her boyfriend. Her favorite indoor destinations include movie theatres and concert halls.

 

To find more on Susan and Molly’s success story, go to http://www.healthyplace.com/blogs/tvshowblog/psychosis-and-saving-my-daughters-sanity/ 



 

This is Stephanie Escamilla. Stephanie is originally from Uvalide, Texas and moved to San Antonio in 2010. At that time, she was a single mom with 2 sons. Her eldest, whose identity she protects under the pseudonym “Daniel”, was diagnosed at age 6 with ADHD and at age 14 was determined to be at risk for bipolar disorder with psychotic features. This began what Stephanie referred to as a “roller coaster ride” for her and her second husband who struggled to find treatment that would prevent the frequent hospitalizations that Daniel needed to manage his mood swings and hallucinations. An important first step for the young parents was to educate themselves about bipolar and psychosis proved to be an important first step in coming to grips with the possibility of mental illness in their family.. Stephanie read every book that she could get her hands on, and her partner said that learning about Daniel’s condition made it easier to be there for his step-son. Understanding what Daniel was going through proved to be especially important for Stephanie’s family, who mistakenly shunned her as a bad mother, but eventually came to respect and support her commitment to her son. Stephanie’s greatest gift to Daniel was showing him that it was safe to tell her what he was seeing  or hearing .  Secure in the knowledge that his mother could handle his visions and voices, Daniel was able to get the medicine and therapy he needed to fend off symptoms.Gradually the family was able to anticipate when symptoms were worsening and fend off prolonged episodes with relaxation, comfort and medicine. By 2015, Daniel (16 years-old) no longer has hallucinations, effectively copes with mood swings, still takes some medication, and only needs to see a therapist once a month.  

 

Stephanie’s message to parents is threefold:

 

1. You are definitely not alone,
2. Never lose hope,
3. Take care of yourself too.


Today, Stephanie is an active member of the San Antonio chapter of the National Association for Mental Illness (NAMI: www.nami.org) where she serves as an advocate to other parents who have children with serious mental illness. Her family’s story was the subject of a 2013 CNN exposé and can be found at: http://www.cnn.com/interactive/2013/12/health/mentally-ill-son/.

Tips for parents with "at-risk" children

 

As the parents above can attest, it can be difficult and sometimes impossible to know the exact right thing to do when their child exhibits early signs of possible disorder. . Generally speaking, the best approach is to keep the person safe, acknowledge the distress and let him know that he is supported. The acronym SAND can remind you of the following 4 basic tips: 

STAY CALM. If parents can remain calm when their children are upset, children tend to have an easier time calming down. Before taking immediate steps to de-escalate, parents are encouraged to check in with their own stress level, take deep breaths and try to calm themselves first. Know your limits, take breaks when possible, and get support when you need it. When you take good care of yourself, you will take better care of others.

AVOID ARGUMENTS. When we say that someone is at risk for  psychosis, we mean that the person is experiencing mild symptoms and continuing to recognize that these experiences are not real. This last characteristic (called ‘insight’) is unstable and tends to come and go. When insight is high, the affected family member may dismiss hallucinations and delusions as “tricks my brain is playing on me.” When insight is low, family members should never try to argue a person back to health. Instead, focus the person away from what’s troubling them, engage them in pleasant activities, or move somewhere less stimulating.   

NEITHER CHALLENGE NOR PLAY ALONG. Confronting a person showing early signs of psychosis tends to be unhelpful. Playing along is equally  unhelpful, and runs the risk of convincing that person to take actions that may be dangerous. So what options do you have? One  is to acknowledge the reality of the person’s distress (e.g., “I can see how upset you are.”) and take attention away from symptoms altogether. Connecting with the person on an emotional level allows you to be helpful without getting bogged down in questions about what that person actually sees, hears, or believes.  

 

DO NOT TAKE IT PERSONALLY.  A child or young adult distressed by early signs of a developing  psychosis may, on occasion, make unkind remarks or accuse the very people trying to help.. It is impossible not to feel some anger, surprise or hurt when such statements are made. To keep perspective, we can remind ourselves that a person perplexed by early signs of a serious mental illness is no longer responding to a false perception of us caused by temporary changes in  brain chemistry. 

Frequently asked questions from the parents of young people at-risk for psychosis 

 

What can I expect for my child’s future?

No one can say for sure whether a person who is at-risk for psychosis will inevitably go on to be diagnosed with psychosis. The reason why professionals cannot guess who will and won’t  go on to develop psychosis is that we still do not know what causes psychosis. In the end, it is more productive to focus on what one can do to feel better and stronger than to try and predict what exactly will happen. 

Is this going to get worse?

 

Once again, no one can say with certainty that any child with early signs is going to  worsen or not. What  clinical researchers can say is that you can improve the probability of a better future if you engage in prevention that educates familied about psychosis and provides counseling on how to manage symptoms, promote recovery, and plan for the future. Treatment should also offer the option of a psychiatric referral and medication if needed. The earlier you begin using preventative strategies, the quicker you are likely to feel better. 

What do I say to relatives? Neighbors?

Mental illness (or in this case, risk factors for mental illness) is a sensitive topic, but keep in mind that you are under no obligation to share all or any details about your child’s mental health with any family members or neighbors if you do not feel comfortable doing so. If you are considering telling someone who is currently unaware of your child’s issues, it can be wise to first test the waters by discussing, for example, a recently read news article on mental illness. In order to gauge their attitudes towards mental illness in general.

Will my child be able to get and keep a job?

Most employed young people who are at risk for developing psychosis continue to work and have plans to continue working in the future. In a recent study of youth ages 12-25 who were in treatment for signs of early psychosis, more than 4 out of 5 were in school or working jobs. Studies that track these young people over time find that those who stay employed tend to manage their emotions  more successfully and stay socially connected to people outside their families. 

What prevention or treatment options are there for my child? Will my child have to take medicine? 

The good news here is that there are more effective options for prevention or treatment of psychosis than existed 10 years ago. One approach called Coordinated Specialty Care (CSC) combines several effective services into a single intervention that covers: education about psychosis, group counseling for individuals and their families, and education and employment consultation. While not everyone needs  medication, psychiatric support is available.

 

Is my child likely to be hospitalized or re-hospitalized?

One of the goals of CORE is to reduce the need for hospitalizations.

As a parent, there are 3 steps you can take to help promote that goal. First, do not wait until early symptoms become disruptive to get your child assessed for mental health problems. Second, engage your child and any other family member with appropriate prevention strategies  that combine visits to the doctor with opportunities for individual, family, or group counseling. Third, participate in preventive strategies  consistently and over a prolonged period of time. A year is considered a minable period of time. 

Does insurance cover this?

The treatment program featured in this website (Delaware CORE, Community Outreach, Referral and Early Intervention) is a federally funded program, and is available to the general public at no cost.  If your child qualifies for CORE, neither you nor your insurance will be billed. If your child does not qualify for CORE, you and your child will be referred for prevention or treatment by another provider. Any fees you incur from attending another program will depend on the type of insurance coverage you and your family have. 

Will my child be able to continue attending the same school? What should I tell my child’s school?

 

Because first signs of psychosis  tend to occur during late adolescence and early adulthood, it is not unexpected that it  may interfere with your child’s education. You may notice a change in your child’s ability to concentrate, as well as a change in their socialization patterns, moods, and/or behaviors, all of which influence a child’s academic performance. However, keeping educational goals in the forefront of our minds is of great value. Continuing to pursue one’s education has many positive effects on one’s recovery from mental illness, including: improved self-esteem, a feeling of being productive, opportunities to socialize, and renewed faith in one’s ability to achieve future goals and find employment.  

 

There are several options for continuing academic learning while you work to reduce risk of psychosis. You may look for educational accommodations at your child’s current school. Because some school staffSome teachers are less accommodating than others, reaching out to the counseling services at the school for support is wise. Also, if you feel a greater accommodation is necessary, you may look into special or alternative education or getting a GED or other high school equivalency. By law, primary and secondary schools are required to provide free and appropriate education for all students.

 

Seeking accommodations from a college or university is more complicated and subject to the policies of each institution. Common examples of accommodations include: more time to complete tests and assignments, student aide to assist with note-taking, or a reduced course load. 

 

You may need a document from a doctor or counselor proving your child’s need for accommodation. If you feel that your child is being discriminated against, follow the school’s reporting and grievance procedure. There should be staff assigned to ensure compliance with the laws and policies pertaining to disability and education.  

 

Useful Links

https://www.nami.org/Learn-More/Mental-Health-Conditions/Related-Conditions/Psychosis 

 

http://www.easacommunity.org/home/ec1/smartlist_77/what_is_psychosis.html

 

http://www.schizophrenia.com/diag.php#common

 

http://www.nlm.nih.gov/medlineplus/ency/article/001553.htm

 

http://www.camh.ca/en/hospital/health_information/a_z_mental_health_and_addiction_information/psychosis/first_episode_psychosis_information_guide/Pages/fep_whatis.aspx

 

http://www2.nami.org/Content/NavigationMenu/First_Episode/About.htm

24 Hour Mental Health and Substance Use Crisis

 

If under age 18, call:

  +1 (800)-969-HELP (4357)

 

For age 18 and over, call:   

  • New Castle County:  +1 (800)-652-2929

  • Kent and Sussex Counties:  +1 (800)-345-6785

 

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