Thursday, October 1, 2015

What Families Can Do During a Mental Health Crisis: Making Sure Your Child Gets the Help S/he Needs

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Mental illness is more prevalent than most people realize.  According to the National Alliance on Mental Illness (NAMI), 1 in 5 children has mental illness.  NAMI also notes that 50% of mental health issues begin by age 14 and 75% by age 24.  Unfortunately, half of children with mental illness do not get treatment in any given year.  Further, children with mental illness have the highest dropout rate of any disability. 

Family caregivers of children with special needs may be dealing with their child’s mental health issues.  It’s better to plan ahead for a mental health crisis so parents aren’t trying to find the information they need at the same time as they are dealing with a crisis.

Mental Health Defined

Families need to remember that mental health, like physical health, is “biologically based.”  This means that there is typically a chemical imbalance.  Unfortunately, there is still stigma associated with mental health and inaccurate stereotypes.  Parents need to know that there should not be shame or blame involved.  Just as a diabetic needs insulin, children with mental illness can’t help the fact that they have mental illness or the conditions associated with this disability.  The organ affected just happens to be the brain in which symptoms show up as behavior. 

What Parents Can Do 

Prevention is key to avoiding getting to a crisis point.  Families need to mention their concerns about their child’s behavior and mental health needs to their child’s pediatrician.  Ways to get help include: 

v  Many states have a Department of Children and Families which can offer assistance. 

v  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.   

v  Due to the shortage of pediatric mental health providers, states may use a model using a primary care doctor consulting remotely with a child psychiatrist.   

v  In some states, there are day programs used for transition from the hospital if the child isn’t ready to go back to their previous school.  Families who may be having difficulty dealing with the school district can contact their Parent Training and Information Center. 

v  Help their child understand their condition and learn to self-advocate.  An excellent booklet is “The Storm in My Brain” which also helps siblings understand what is happening with their sibling, which is found at

What if Families Disagree with Mental Health Professionals
It is vital to attend all family meetings discussing discharge.  Families should also be getting information on progress on an ongoing basis.  Unfortunately, research shows that the 28 day stay that was previously the norm for stabilization has decreased since 1999 down to 5 days.  If parents think that their child isn’t ready to go home, they must advocate for a longer stay.  They could emphasize if they feel like their child is “a danger to self or others.”  Families can also express their concern that their child could end up back in the emergency room, starting treatment over, or that their child could end up getting involved in behavior that leads to police involvement.  There are organizations that will help parents to advocate for their children.  Families can get help with mental health issues from the Federation of Families for Children’s Mental Health (FFCMH), or the National Alliance on Mental Illness.  These organizations also have workshops for families to help them deal with a child with mental health issues, and could address other issues such as minor consent to treatment in some states.   
Parents who get information about their child’s mental illness and treatment options will help improve outcomes for their child.
Federation of Families for Children’s Mental Health

National Alliance on Mental Illness

Parent Training & Information Centers

For Kids Only

Going to a Psychiatrist, Psychologist, or Therapist

 Why Am I So Sad?

Five Steps for Fighting Stress
The Story on Stress
For Teens
Kids Health has a series including topics like feeling sad, feelings & emotions, body image, etc. at or Spanish
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

Tuesday, September 1, 2015

Who Helps Children with Special Needs and Their Families? State Departments Serving Children

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Family caregivers of children with disabilities may not be aware of the full range of services for children in their state.  Besides non-profit and disability specific organizations such as Parent Training and Information Centers, Family-to-Family Health Information Centers, and Parent-to-Parent support, there are various departments in state government serving children with special needs and their families.  
Department of Children & Families
In some states, families are fortunate to have a department specifically for children.  In these states, most if not all services (usually excluding education) fall under this umbrella organization.  Some of these services are Child Protection, Children’s System of Care (mental health), etc.  The Administration for Children and Families has a section for parents on finding help at

Department of Education
The Department of Education is a key resource for families who may have children in special education including those who are included in general education classes.  Many departments have information on education processes and forms such as IEPs (Individual Education Plans), parental rights, policies affecting education, and so on.  A listing of state offices of education and special education is available from the U.S. Department of Education at
Department of Health

This is another important area for families of children with disabilities and special health care needs.  Here they will find resources on health coverage, disability specific information, evaluation centers, and dental care which is essential for overall health.  A list of state health departments is available from Health Finder at  There is also a list of health topics on the homepage for specific conditions.

Department of Human Services
Lastly, Human Services will have links to actual services to children and adults with developmental disabilities, help paying for medical bills, home modification, and transportation.  State Departments of Human Services can also be found on the HealthFinder link above.

There may be other departments in each state helping children and their families.  Not all services are the same in every state.  Parents need to find out what is available in their state and if there are free or low cost services.  Families of children with disabilities can get various services, sometimes free, from the various departments or divisions in their state government.  Parents can help their child with special needs to maximize their potential by accessing these services.  



List of State Government websites

Sample of State Departments with Descriptions-NJ


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

Wednesday, August 12, 2015

Mama vs the Accent 1400

When we first brought Cary Lynn home to live with us she was little, observant, and non verbal.

At nine months old when babbling and words are starting to kick in my daughter remained silent.

That was our first meeting.  Mind you with a mouth full of binky it's hard to say anything.  And in the beginning that binky was a staple for every one's sanity!

But that didn't mean she didn't communicate.  My daughter knows how to get her point across.  The first week when we landed in the hospital the doctor came in and made the rounds.  He stood by my daughter's bed and compared her intelligence level to that of a slug.  Or something uncomplimentary.  Anyway, he then stuck his finger too close to her mouth to poke at her.  She bit him.  Hard.  Yup I thought, she's a keeper.  It was at that point that I really fell in love with my new daughter.

We dutifully did what all good parents did and signed up for speech with Early Intervention.  Her teacher came weekly and her goal was speech.  But still the words didn't come.  You see Cerebral Palsy robbed my daughter of so many things.  Looking at an MRI we saw that her language center is roached (not a medical term but you get the point).  Asking her to learn to speak is as pointless as asking me to learn Sanskrit.

But lack of speech does not mean lack of communication.  Those are two different things.  Even though the words didn't come the sounds did.  Clicks, raspberries, facical expression and various vocal tones erupted.  Even though words weren't there sounds were.  Soon it dawned on me that she had a lot to say.  So I started to listen.  Soon I found myself understanding Cary Lynn's primitive language.  I also got to be her interpreter.

But I wanted more for her.  I wanted HER to say words.  So by then we were outpatients at Children's Hospital.  They introduced me to the big mac switch.
Yay!  I felt like we were getting somewhere!!!  But the thrill didn't last.  You can record ONE phrase. That's it.  So Cary Lynn got bored.  I tried to convince her speech people that she could say more.  But they were stuck on "we only do it this way and kids like Cary Lynn just can't handle more than one phrase."  My daughter was being denied a voice.  I tried to make it work.  We had a huge meeting with the heads up.  They were only concerned with the attendance policy.  Not giving my child words.  In fact they really believed that kids weren't capable.  So I did something really sensible.  I left.  I figured no therapy was better than what she was getting.  We did finally find a good fit at a new center. 

I was discouraged.  I started to question whether Cary Lynn really was capable.  Then the stars lined up.  First I met another mom who was passionate about communication.  She made Cary Lynn a very special book. 
This is PODD.  This book with the switch opened a whole new world.  With a person scanning the words Cary Lynn had lots of options.  But I was greedy.  I wanted more for her.  I wanted her to have ALL the words.  

So I traveled to another children's hospital and had her evaluated.  After two hours they brought us back.  After another two hours we were told we get to trial an Accent 1400.  Cary Lynn rocked it in the eval but after I went home I started to get a little (OK a lot) anxiety ridden about it.  What if it didn't work?  What if it was too much?  What if she couldn't?  What if I didn't model it just right or just enough?  

Once again stuff fell into place.  We met with Kate Ahern.  If you don't know who this fantastic human is check her out here.  She met and spent quite a bit of time working with my daughter.  Because she believed in us and that we can make this happen I believed that I can do this and we can give my child a voice.  

Then the device came.  Our sales person conveniently went on vacation but luckily my friend came up and we got that bad boy in gear!

This is core scanner.  It doesn't look like much yet, but as time goes on more and more words will be added.  This is the start.  I was overwhelmed a bit (ok a lot but I managed to squelch it) and I hesitantly introduced Cary Lynn to Chip (yes I name everything).

Here's Chip your new personal communication assistant, said with a smile. The Cary Lynn proceeded to push Chip off her tray in an effort to kill him off quick.  And laughed.  Because you know destroying a $7000 device is all in a day's work.

NO NO NO YOU DON'T THROW CHIP!!!!  So Chip needed a second and so did I at that point.  I took a breath, turned him on and started playing with Marvin.  As I demonstrated Chip to Marvin I heard interested grunting coming from some little person.  I asked her if she wanted to try again.  A click meant yes.  So I handed over Chip.  Carefully.

Chip and Cary Lynn have started bonding.  She still likes to try to send him to his untimely demise but she is starting to understand that her words have power.
She has a switch, Chip reads the words and she picks.  Right now she prefers to wack Chip in the face with her hands. 
But I'm not picky.  I'll take what I can get.  She even asked to use Chip today!!!  So we are making progress. It takes time but I'm willing to invest the time.  I'm only hoping that the world sees what I can see.  A little girl who is smart, sassy and finding her voice.  

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Amy Fields is a wife, mother of two special needs children, three deranged cats and a opossum.  You can follow her adventures in her blog Many Kinds of Families.  

Tuesday, August 4, 2015

A Glimpse

I am a fast-moving kind of a gal.

I go, go, go.

I drive, drive, drive.

I move, move, move.

Always traveling at a steady pace.

Full speed ahead.

Occasionally, however, the Universe will place something in my path to block my forward motion.

I am frozen for a moment, unable to move, touched deeply by something profound,

something that moves me,

something outside of myself.

These moments are often caused by the strangest and simplest of things,

the lyrics to a song

or a license plate posted on the car in front of me.

Whatever the message or incident, it has a profound effect on me.

It awakens me from my blindness.

When you think about it, if I am always looking ahead,

then I am oblivious to what's behind me.

I miss the opportunity to value my important progress.

I lack the ability to reflect,

to think about where I have been.

To admire the progress I have made.

so that I may appreciate where I am headed.

Important life lessons reside in these rare and powerful moments.

They are glimpses, I believe, of something we need to acknowledge.

A message we need to hear.

To me, it's like a PowerPoint presentation sent directly from above.

An exclamation point,

an emphasis on something overlooked.

I would like to share one of these rare moments with you.

It is a glimpse that took my breath away.

On Friday, my beautiful niece sent me this.....

It is Nick singing

many years ago,

reminding me on this day,

to just sing, sing a song.

Nicholas Peters
Here Comes the Sun

Sing, sing a song
Sing out loud
Sing out strong
Sing of good things not bad
Sing of happy, not sad
Sing, sing a song
Make it simple to last
Your whole life long
Don't worry that it's not
Good enough for anyone
Else to hear
Just sing, sing a song
Sing, sing a song
Let the whole world sing along
Sing of love there could be
Sing for you and for me
Sing, sing a song
Make it simple to last
Your whole life long
Don't worry that it's not
Good enough for anyone
Else to hear
Just sing, sing a song
-The Carpenters

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Lisa Peters writes about family life at

Saturday, August 1, 2015

Help: My doctor said my child had a rare condition! Where do I find information?

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It’s hard enough on family caregivers when their child receives a new diagnosis.  The challenge is made even more difficult when the condition is rare.

What are rare disorders?

Rare disorders affect only a small number of individuals.  It may be daunting for family caregivers to try to find information that’s scarce.  There are many websites for health conditions, but not a lot that cover rare conditions. 

Where is reputable information available? 

Ø  If parents find out that their child has an unusual condition, there is good information available from the National Institutes of Health. 

Ø  The National Organization for Rare Disorders has a searchable database.   

Ø  For chromosomal disorders, there are descriptions of genetic testing and conditions available from Unique.

A Note on Genetics 

There are many good resources available and parents may feel relieved if the child’s symptoms finally “have a name.”  If it does turn out to be a genetic condition, other resources (besides Unique listed above) can be helpful:
·         Explaining the basics of what genetics means for families is Genes in Life.   
·         The Genetic Alliance has various resources, including “Children and Youth with Special Healthcare Needs in Healthy People 2020: A Consumer Perspective.”  
·         There is even information regarding children with developmental or other disabilities who need organ transplants available from the Boggs Center.

A Final Word on Support
      Sometimes family caregivers need to talk to another parent “who has been there.”  Many of the disability specific organizations may have support groups or match parents.  An excellent resource that matches trained volunteer parents to families of children with the same or similar condition is Parent-to-Parent.

Family caregivers won’t feel so helpless or hopeless if they find out information on their child’s condition and learn how to handle it.  If parents know what to expect, they can take better care of their child, resulting in better health outcomes for their child. 
National Institutes of Health-Rare Diseases
National Organization for Rare Disorders
Boggs Center-transplants and disability


Unique-chromosomal disorders

Genes in Life
Genetic Alliance

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