Thursday, November 5, 2015

Losing Heart

As a society, we value intelligence.

We are brain heavy.

Folks with big brains are elevated in status and honored throughout history.

This intellectual power has transitioned us, as humans, out of ignorance and into civility.

Great minds have hurled us into a new technological world filled with wondrous devices like automobiles, cell phones, the Internet, and HDTV.

Devices designed to connect us as human beings,

While all of this brain work is performed in the name of progress with a desire to keep us connected,

I wonder just how connected we are?

We tweet but do we talk?

We post but do we listen?

We "like" but do we know how to love?

I wonder if in our pursuit of greatness, we have lost our hearts?

Has our desire to become smarter inhibited our ability to become deeper?

Throwing us off balance,

creating an emotional vacuum

abhorred by nature

Are we forgetting the simple things?

Why is intelligence considered a strength,

while compassion is viewed as a weakness?

My son Nicholas is not an intellectual mastermind.

In fact, he is cognitively delayed,

mentally inferior

he has been labeled "a retard"

a human being who is somehow less.

A victim of our society's obsession with the mind.

Think about the words we use to describe those lacking in superior brain power.

feeble, incapacitated, dim

suggesting a weakness, a brokenness, an absence of light.

But I am Nick's mother.

And although I may not have a superior IQ,

what I see in my son is something more

not less

Perhaps you believe I am deluding myself

in an effort to "super humanize" my inferior child?

And maybe that is true.

But maybe, just maybe, as a long time observer of my child,

I see something you do not.

I see a boy who engages always with his heart,

not with his head.

His life is heart-full.

His spirit bright and strong.

He sees the beauty in simple things,

and loves from his soul.

He enjoys the now

and is able....simply "to be"

Creating an inner peace and ability to love unconditionally.

Bringing out the very best in others.

And although he is defined by some as "simple"

I believe his purpose here on earth is complex.

With his silence, he educates,

Defining a shining and seemingly forgotten truth that:

When we see with our brain.....we judge.

When we see with our heart.......we accept.

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Lisa Peters writes about family life at

Sunday, November 1, 2015

What Family Caregivers Need to Know about Children’s Mental Health

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My previous blog dealt with mental health crisis, but there is general information about mental health issues that all families should know.  1 in 5 children have mental health issues, yet only 50% get help.  Half of mental illnesses start by age 14. The highest dropout rates are for kids with mental illness (source NAMI {National Alliance on Mental Illness.})   Here is a summary of the Statewide Parent Advocacy Network’s mental health guide for families (see Resources.)


Access to care
Mental Health is just as important as physical health. The Affordable Care Act strengthened access to mental health services. One of the ten Essential Health Benefits is coverage for “mental health and substance use disorder services, including behavioral health treatment.”

Avoiding Stigma

In dealing with mental health, families must try to avoid the stigma associated with mental illness. The NAMI likens it to any other biologically-based illness except the organ affected just happens to be the brain, and the symptoms manifest as behavior. Just as no one would blame someone with diabetes who needed insulin, the same should be true for those who need treatment for mental illness.

When to Get Help

It could be time to talk with your primary care provider and consider getting professional help if your child has any of the following symptoms:

 Frequent temper tantrums

 Crying more than usual

 Not doing things they enjoy

 Waking up at night

 Needing a routine or doing the same things over and over

 Overeating or extreme dieting

 Not being able to sit still or pay attention

 Doing poorly in school

 Drinking, smoking, drugs

 Not dealing well with loss (such as death in the family)

 Trauma (natural disaster, abuse, accident etc.)

 Any behavior that is harmful to themselves or others

What to Expect

The mental health provider will do an assessment of the child, including family history. They may use tests to screen for certain conditions. If the assessment shows the possibility of a disorder, the child may need a more detailed evaluation to reach a diagnosis.

The Diagnosis

Sometimes the “not knowing” is worse than actually having a name for the condition. Once parents know what’s happening, they may not feel so helpless or hopeless.  The child may start having questions and ask about his/her condition. Children may ask, “Why I am I different,” or “Why is it so much harder for me to do things?”



Medication use is a personal decision. Families need to realize, however, that mental illness is “biologically based.” Families may also be concerned about the “black box warnings” on certain medications for children. The warning, although warranted, has predictably lowered the amount of certain prescriptions; however, there must be recognition that untreated depression is the highest risk factor for suicide. There are some excellent guides on medication use which should help parents, which also address this issue of balance.


Supports and Services

SAMHSA (Substance Abuse and Mental Health Services Administration) emphasizes a Wellness/Recovery Model. Prevention, as well as getting better, are the key ideas. This idea of wellness is based on “evidence-based practices” (proven to work.) The key recovery concepts are hope, education, personal responsibility, support and self-advocacy.

Schools and Mental Health

Collaboration and education on mental health in the school setting is critical. Children spend many hours in the school environment. Schools have a responsibility to identify children who may have emotional, behavioral, and/or mental health challenges. When there are concerns, the child may go through a pre-referral intervention such as the Intervention and Referral Services (I&RS) Team in New Jersey. The team may decide that the child just needs extra supports in school and then look at Response to Invention (RTI), which requires the school to provide “evidence-based” interventions and then determine whether those interventions had the desired effect.  An important piece for success at school is the use of Positive Behavioral Interventions and Supports. Behavior is the result of the child trying to communicate the best he/she can.

State Agencies on Children’s Mental Health

Many states have a Department of Children and Families which can offer assistance. Some states have a “Children’s System of Care” which covers behavioral health. There may also be “mobile response” available for crisis intervention which means they would go to where the child is, including home, to try and deescalate the crisis and stabilize the situation.

Where to Find Help in Your Community

There are many organizations that support families of children with challenging behaviors. 
  •   Federation of Families for Children’s Mental Health
FFCMH is a national family-run organization linking more than 120 chapters and state organizations focused on the issues of children and youth with emotional, behavioral, or mental health needs and their families.” 

  •   National Alliance on Mental Illness
NAMI has workshops for families, a Child & Adolescent Action Center, and a family guide on how a primary care doctor can address mental health.
  •   Parent-to Parent
Parent-to-Parent is a national network offering support to families. Trained volunteer parents are matched with families of children with the same condition. These services are free to families. Parents can get one-to-one support from another parent who’s “been there.” 

Advocacy/Self-Advocacy Issues

There are some issues regarding mental health that may affect children and also later as they become self-advocates. These can include minor consent, making medical decisions, parent’s rights, restraints, waiting in emergency rooms, and dual diagnosis of mental illness and developmental disability.

Other good resources for families:

There are resources for young children, helping siblings understand, and information for teens (listed in our mental health guide in Resources.)  Family caregivers who have children with mental illness can use this information to make good treatment choices for their child, resulting in best outcomes.


Children’s Mental Health Services:  A Family Guide

Parent Training and Information Centers


Positive Behavioral Interventions and Supports 

Remain Hopeful,


Lauren Agoratus is a parent/advocate who works for the Statewide Parent Advocacy Network and serves as the NJ Coordinator for Family Voices (, a national network that works to “keep families at the center of children’s healthcare” at or FB  She also serves as NJ representative supporting caregivers across the lifespan for the Caregiver Action Network (formerly National Family Caregivers Association) in a volunteer capacity at or FB