Tuesday, December 22, 2015


I believe too often we underestimate children.

Let me explain.

As part of Nick's transition to a new school, it was agreed that a presentation on Prader Willi Syndrome would be offered to his entire 8th grade class. This, I believed, was important so fellow students could understand how to relate better to Nick.

The idea arose from the inclusion success we experienced last year at his previous school. If you are a reader of our blog, you may recall Nick's sixth grade teachers asking me to speak to their students about inclusion and the tremendous response that occurred once the children were enlightened.

To learn more, read here.

Nick's new school however, was not interested in allowing me to speak to their kids. In fact, parental involvement has always been vehemently discouraged in our local school district. So instead, it was suggested a PWS "expert" present the show. I decided it really didn't matter who gave the discussion, as long as the children were educated, so I agreed.

A speaker was hired and scheduled to visit the school in November. A letter was sent out to parents informing them of the upcoming assembly and providing an opportunity for those students who were not interested to opt out.

A few days before the big event, I received a call from the special ed coordinator. She informed me that the "expert" expressed deep reservations about speaking to middle school children. She feared that students at this level would not want to help. She feared that Nicholas would be bullied.

Since this was an "expert" making these statements, the coordinator canceled the speaking engagement and begged me to reconsider my request.

I used only one word to answer her:


I told her "the so-called expert" seriously underestimated these students.

I told her I knew this because I had done this before. I had spoken to teens about inclusion and experienced spectacular results. I described how last year's students became enthused about inclusion and wanted to help. I told her how several teens expressed how they were no longer afraid and appreciated learning about how to relate to children diagnosed with special needs. I told her how the experience moved students, teachers, and administrators to embrace change.

Still, she did not believe.

"Middle school children are different," she said.

"No," I argued, "They will surprise you."

She disagreed.

But since my request was written up as part of Nick's IEP, she had no choice but to comply.

She agreed to move forward but requested that SHE give the presentation. She asked to use the PWS PowerPoint slides I had presented to the staff. She asked if I would attend the assembly as her assistant, there only to answer any medical questions.

But I had no idea how well she could speak.

The PowerPoint presentation was my baby, my blood, sweat and tears. Would she do it justice? Did she have an ability to connect with an audience, particularly one she didn't trust.

I was worried.

When suddenly I was struck by an idea.

I realized I had a chance to enlighten not just the children but this  "nonbelieving" special ed coordinator too. I couldn't resist.

"Let's do it!" I told her.

The big day arrived. The coordinator was nervous. I told her not to worry and that she would be pleasantly surprised by the student's response. I told her that even if she changed the mind of only one student, then it would be a success, she would change the world.

Still, she did not believe.

We entered the empty auditorium where the PowerPoint projector was prepped and ready for our use. Unfortunately, however, the remote control to change the slides was missing.

Luckily, the assistant principal entered the room. I asked her if she or one of the 8th grade teachers would kindly help us to switch slides?

She laughed in my face at such an audacious request and told me that I should be grateful they were attending at all. It was clear from her tone that the teachers were NOT interested in this inclusion presentation. They were not convinced that this would work. They were resentful to be asked to participate in such a ridiculous farce.

I ignored her behavior and told the coordinator I would switch the slides.

Slowly, the students began to enter the auditorium.

They were excited and animated, speaking loudly among themselves. More and more students arrived, filling the room to it's capacity, most of them sitting directly up front. Nicholas and I were seated before the crowd.

The assistant principal stood beside us and held up her hand,

"Quiet down," she barked, "We are here today to learn more about one of our new students"

The boisterous crowd became silent.

The coordinator who was standing quietly behind the podium, began to speak.

She was nervous and spoke very softly.

In an effort to finish, she breezed through the slides too quickly

I began to worry that she was losing the audience, neglecting to pause after each slide to give the crowd a moment to reflect.

But the presentation was filled with powerful images and it appeared that folks were listening.

"Sometimes real superheroes live in the hearts of small children fighting big battles"

She finished the show in record speed and asked,

"Does anyone have any questions?"

There was complete silence.

No one moved.

The coordinator shoulder's sank, her worst fears realized, the kids, she believed, were not ready for this.

The assistant principal smiled smugly.

But I knew better.

I sprung from my chair to speak directly to the children.

"I know what you're thinking. This is scary stuff. I was scared once too. And I am Nick's mother. But right now we have an opportunity, a chance to learn all about this frightening stuff. In fact, once you ask your questions, I am sure you will find that it's not so scary after all. You will find that Nick is the BEST friend you could ever have. He will not talk behind your back. He will never say an unkind word. He will ALWAYS be happy to see you. So, please raise your hands and ask the questions you want to ask."

I looked beside me and asked Nick if he wanted to say anything to the children. He smiled and turned his head to the side, telling the kids,

"Aw Mum, I'm too shy."

That was all it took. One by one, a few hands went up.

The coordinator, using a microphone, walked over to the students and asked them to speak their questions directly into the hand piece.

"Will Nick always have this?" A brave boy asked.

"What is a seizure?" another one said.

"Where is Nick's classroom located?"

"Is he coming with us to Camp Kiev?"

And pretty soon a sea of hands shot up from the crowd, a mighty collection of boys and girls, all wanting to know more. The coordinator ran from one side of the room to the other trying to keep up with all the questions. The students were motivated and engaged, anxious to learn exactly how they could help Nicholas.

I was surprised to see a few teachers raise their hands.

The assistant principal's jaw dropped open wide as she stood speechless beside me.

Soon, we ran out of time. The bell rang to signal the end of our time together.

The coordinator announced loudly to the students that before they left, there was a sign-up sheet located up front for anyone who was interested in visiting Nicholas in his classroom.

In one collective movement, all of the students rose and headed toward the front. No one left.

Lines and lines of giggling students clogged the aisle-ways.

All of them interested in one thing,

getting to know Nick.

The response was overwhelming.

The coordinator and assistant principal scurried out of the room to rustle up more pens and paper so more children could enlist.

What was immediately noticeable, at least to me, were the smiles on the student's faces.

The kids, I believe, were inspired, hopeful to have an opportunity to make a difference and become empowered.

It was a beautiful bonding experience for the entire room of participants. The energy was electrifying.

Surprisingly, on the face of the special ed coordinator....a tear.

I thanked her for her bravery.

The very next day, I received an email from her. She thanked me for pushing her. She told me that a boy she did not know approached her in the hallway and said,

"Nice speech!"

She told me the assistant principal made a special effort to describe the energized climate at the staff meeting held shortly after the presentation. At the meeting the teachers were inspired and exuberant, anxious to discuss ways of including Nicholas into their classes.

And the number of students who signed up to come visit Nick's classroom you ask?

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Lisa Peters writes about family life at www.onalifelessperfect.blogspot.com

Thursday, December 10, 2015

An Open Letter to the US Department of Education

Normally it's me who posts.  I've been silent for a couple of months.  It hasn't been a quiet couple of months though!  I did have a post ready for today but where I live there is a growing problem.  A very large one.

Our area isn't where it should be in the special education realm.  I've fought our county and our state since the adoption of my first child.  This is not OK.

Today I'm turing over my spot to a talented writer named Erin.  She is an amazing woman.  She has also been through the fires of hell over trying to get justice for her children.

But justice is fickle and as of now her whole life has been turned upside down in trying to do what is right for her children.

I'm posting the link to her blog post.  Please read it.  After you are done, share it.  Then find places on line that you can share it some more.  Sharing this blog won't make you a millionaire or grant you seven wishes, but it will let the world see that what was done wasn't right. That justice wasn't given.

Click here to get to the post 

I plan on being back next month, but in the meantime please read.  Her children's rights have been ignored for far to long.

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Amy Fields is a wife, mother, and advocate.  You can find her at Many Kinds of Families

Tuesday, December 1, 2015

Holidays should be fun - not stressful!

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Many family caregivers of children with special needs struggle with trying to follow holiday traditions given the other stressors in their lives.  Here are some ways to make this time of the year easier for families.

It doesn’t need to be the same 

Family caregivers need to realize that their children can participate in holiday festivities but maybe in a different way than has been traditional.  Like school, holiday activities can be modified to accommodate the special needs of their child. 
v   If your child is on a special diet for medical reasons, find out what is being served ahead of time and bring a “safe” version so your child can still eat what everyone else is having.
Photo www.nhs.uk     
v  If going to a religious service, bring a comfort item like a stuffed animal or a quiet activity like a coloring book to keep the child entertained.
                                             Photo www.idahofederation.org 
v  Make sure ahead of time that the venue (if it’s somewhere you’ve never been) is physically accessible for people with disabilities
                                             Photo www.nlfolk.ccom
Ways to decrease “meltdowns” 
Many children with special needs become overwhelmed by sensory issues (sights, sounds, even smells.)  When children with disabilities get to the point of “too much”, often they act out as a way to communicate.  There are things parents can do to reduce sensory over-stimulation and avoid these behaviors. 
Ø  In a crowded event, sit or stand on the outside of the crowd to reduce the feeling of being overwhelmed.  Even if the child can only participate for a short time, it’s better than not at all.
Ø  If your child is sensitive to noise, bring headphones. 
Ø  If your child is overly sensitive to light, bring sunglasses. 
Ø  If possible, find a quiet corner away from the main activity so the child can calm down and rejoin later. 
Ø  Some children even get overwhelmed by opening too many gifts.  Open one or a few and save the rest to spread out over several days instead of all at once. 
Ø  Social Stories will help prepare the child about what to expect.

                                                  Source:  www.setbc.org 

Most people will understand if the child with disabilities doesn’t act perfectly.  If extended family members insist on traditions such as sitting at the table, parents can take turns eating.  If grandparents or others still don’t understand, it may be necessary to make a separate visit with just the family and grandparents in a smaller group to keep things are calmer.  Family caregivers need to remember that special needs don’t go away just because it’s the holidays! 


Surviving the Holidays with your Sanity Intact (One Place for Special Needs)

Enjoying The Holiday Family Gathering With Your Special Needs Child (Delaware Family-to-Family Health Information Center)

Reduce Holiday Stress with Proper Nutrition and Health Promotion (National Center on Health, Physical Activity and Disability)

Social Stories

For Caregivers

10 Tips for Caregivers During the Holidays (AARP)
Spanish http://www.aarp.org/espanol/hogar-familia/prestar-cuidados/prestar-cuidado/info-11-2013/consejos-estres-cuidadores-amy-goyer.html?intcmp=AE-HOME-TOSPA-TOGL

Caregiving and the holidays: from stress to success! (Family Caregiver Alliance)
Caregiver’s Guide for Managing the Holidays (Caregiver Alliance-Boston)http://www.caregiveralliance.org/news/holidayguide.pdf
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 (www.spanadvocacy.org), a national network that works to “keep families at the center of children’s healthcare” at www.familyvoices.org or FB www.facebook.com/pages/Family-Voices-Inc-National/137783182902269.  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 http://caregiveraction.org/ or FB www.facebook.com/CaregiverActionNetwork.

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 www.onalifelessperfect.blogspot.com

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.)

Photo www.unitedwayaustin.org

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
                                                  Photo www.coordinatedfamilycare.org

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?”

                                             Photo http://forourkids1st.blogspot.com


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 (www.spanadvocacy.org), a national network that works to “keep families at the center of children’s healthcare” at www.familyvoices.org or FB www.facebook.com/pages/Family-Voices-Inc-National/137783182902269.  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 http://caregiveraction.org/ or FB www.facebook.com/CaregiverActionNetwork.