Wednesday, May 27, 2015


If you are the parent of a child diagnosed with special needs,

the quality of education your child receives in the public school environment

is directly proportional to how good you are at playing chess.

It's about strategy.

It's about playing aggressively.

It's about understanding the unique movement of each of the pieces,

And how they work together.

But before you play, you better acknowledge the indisputable fact

that you are indeed playing a game.

And the more adept you are at maneuvering, the more support and services your child will receive.

In chess, the key to winning is first to assess the competence of your opponent.

In this case, it is a fierce one, a ruthless master, skilled in the art of merciless annihilation and all-out guerrilla warfare.

In fact, it is a lot like playing chess with Bobby Fischer.

The name of the game is intimidation,

achieved easily through misdirection and manipulation.

It is very unlikely that you are going to beat one of the greatest chess players who ever lived.

In fact, let's face it, it's going to be a blood bath.

And the blood that's spilled is going to be yours.....and lots of it.

Along with your sweat, your sleep, your tears and all of your money.

You can hire someone to play chess for you.

But there is no guarantee that they are going to win.

In fact, it will probably do nothing more than cost you more sweat, sleep, tears and money.

It is a never-ending battle to see just how much money the school is willing to pay for the "free" and appropriate education of your child. And the more disabled your child is, the less likely the school will be to accommodate them, since special needs supports and services are often accompanied by some pretty hefty price tags.

It is a fight for tax dollars and federal funds.

The prevailing dogma being that school funds can be used more efficiently in meeting the greater needs of the "healthy many" rather than the costly needs of the "disabled few"

Better to spend money building things like football fields and administrative offices than to accommodate out-of-district placements for medically complex children. Who, more often than not, will be shoved into some windowless closet of a classroom with little supervision and severe behaviorally-challenged children increasing the probability of verbal, physical or in the severest cases, even sexual abuse.

The law unfortunately supports this madness as the child must fail in the public school environment first before a new placement is considered.

As parents of children diagnosed with special needs we hold our breaths,

and pray we play the game well enough to keep our children safe.

There are other things we pray our children achieve,
like making academic progress and building social success.
But those victories can be even more 
illusive, feeling a lot like winning the lottery.
It happens, but to a rare few.
For the last three years we have been one of these fortunate families. Nicholas won the special needs lottery and experienced tremendous social and academic success. He was fully and whole-heartedly embraced by his entire school community. He matured into a happy, well-adjusted student, a child like any other.
Today however, we do not have agreement with the school district about where Nicholas will be educated next year. He is transitioning out of the elementary school and will begin his journey into a new middle school program.
The question is....................where?
The Chess Players, Friedrich Moritz August Retzsch
  Once again I am forced to play chess with a formidable opponent
and pray that my game is good enough.

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Lisa Peters writes about family life at

Wednesday, May 13, 2015

A Letter to My Son

Dear Marvin,

Where did the time fly to?  When you came to our home you gave me a new name.  Mama.  I was so excited to have you come be a part of our family.  After years of wanting a wee one and watching friends and family have children I was finally able to have a little one of my own.
You were so little and you were just what our family needed.  You brought laughter, smiles, and mess.   You made our house a home.

Every day we watched you grow and we loved you more and more.  Even though you had a tough start you never let things stop you or slow you down.

Then the day came when you started asking for a "baby scissor",  Dada and I were talking about another child and we weren't sure what we wanted.  When the social worker asked you you didn't hesitate.  You announced you NEEDED a "baby scissor".  And then you looked at her with those baby blue eyes and she told you that you will get one.

When Cary Lynn came home you were so excited.  You put on the roll of big brother like I put on my crocks.  It was a comfortable easy fit for you.  You became Cary Lynn's champion, number one fan, and the way you love and protect her makes me so proud of you.

You changed, just like we all did when she came home.  You knew instinctively that she requires more time and attention.  You have unselfishly given of your time and pitched in when needed. Sometimes I feel terrible that I can't give you my 100% but you never complain.  You just hug me harder.

Every day you grow and change.  We are so proud of you.  This weekend you will turn 8.  I can't wait to see where this year's journey will take us.

I love you more than words can say.  You are my everything and my all.  I am proud of you.

Your Mama

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Amy Fields is a mama to two special needs kids.  You can follow her on her blog Many Kinds of Families

Saturday, May 2, 2015

Child Whisperers

I am the mother of two children diagnosed with special needs.

But I am not a parent.

Yes, you read that right, I am NOT a parent.

At least not in the ordinary sense of the word.

To me, parenting is about educating your children and providing them with instruction and social conditioning so that one day they may acclimate into the world and conform to what society expects of them.

For a long time that is exactly what I tried to do.

I became a parent like any other and tried to condition my children, to mold them into society.

I pounded and pounded on my square pegs trying to fit them into unaccommodating round holes.

The end result of all this pounding was nothing more than splintered wood.

There was costly damage inflicted upon all of us.

On my journey to raise unique children, I am beginning to believe that I must redefine my ideas about parenting.

Or at least what this role means to me.

Is it my job to mold what is un-moldable?

To search for a "place" for my children that does not exist?

To send them into a world that does not know them?

It all sounds like madness to me.

 And so I search to create my own definition of parenthood.

What does it mean to be a parent of a child diagnosed with special needs?

In this role, when and what am I doing that feels right?

After 16 years of special needs parenting, I can tell you, without a doubt, that it is when I assume the role of an observer that the magic begins.

It is when I watch them.

When I really, really study them, noticing the small things that they do or say that seem to speak so loudly.

Only when I am enlightened, and educated,

am I helpful to my children.

I listen instead of lecture.

It is when I assume a passive role, that I move forward.

In this role, I am not the parent or at least not the one doing the educating.

It is counter intuitive, feeling a lot like parenting in reverse.

But as an observer, I have learned many things from my children.

They seem to know instinctively of life and love and sing of the simple things.

They value things like honesty, love and togetherness.

They possess warm spirits and pure hearts.

Their messages are the medicine the world lacks.

I do not believe my children are alone in this knowledge.

I believe many parents feel similarly.

That our children are trying to tell us something.

But how do children diagnosed with special needs, many who cannot express or speak, communicate these powerful lessons?

I have learned that it is through me.

That this is my job as a parent.

I am not preparing my children for the world

but instead am being conditioned

to prepare the world for them.

To do this, I must not only be an observer of my children, but also a translator for them.

I must take the foreign language my children speak and translate it into English, breaking it down into small understandable parts so others may hear their beautiful songs.

This is my job as a parent.

I am not raising my children.

I am raising the world.....helping it to learn how to see children who are different.

I must teach the world to value these special souls, to accept them, to learn their unusual language.

For their language has a vibration that seems to resonate in those seeking a more meaningful life.

In becoming more loving and accepting of those who are unable to help themselves, perhaps in a way we begin to heal and love ourselves?

Perhaps we begin to heal the world?

I am not a parent.

I am an observer and translator

a teacher

a child whisperer

an awakener of the world.

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Lisa Peters writes about family life at

Friday, May 1, 2015

Help with Prescription Medicines for Families

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Family caregivers need to ensure that their children/family member’s medication is given at the right time, right dose, and right route (for example oral, injected, topical.)  Correct management of prescriptions is the biggest influence on preventing hospitalization. 

Tools for Family Caregivers
Organizing medicines can be challenging, especially for parents of children with complex needs.  There are online tools and apps. that list the name of the medicine, what it looks like, which condition it treats, and the time and amount given – all on the same page.  There is even a wallet size option so families can have the list on hand.  Lastly there is a checklist for filling a pill organizer.  There are also printable forms that parents can fill out if they prefer paper copies to apps. or being online.   See Resources at the end for some of these tools, including MyMedSchedule illustration below.
What Affects Access to Medications?
1.      Health Literacy
Research has shown that only 1 in 7 people can correctly read a prescription label.  Health literacy is the largest barrier to health care access.  See the diagram below on how to read a medication label.
2.      Medicaid
Ø  Limit to 30 days’ supply
Family caregivers can order Medicaid prescriptions up to 3 days in advance so if done monthly they won’t run out.  This would also help them have a little extra on hand for emergency preparedness (natural disasters.)
Ø  Medicaid as secondary insurance
Family caregivers may erroneously be told they must cover a copay.  Another reason to refill 3 days ahead gives parents time to appeal.  Medicaid should cover the rest after private, and sometimes Medicare, are billed. 
Ø  Pharmacy benefits and out-of-state authorization
If a child needs a non-formulary medication while hospitalized, parents may have to fill prescriptions outside of their home state.  However, families can contact their state’s Medicaid office to get reimbursed later.
Ø  Having both Medicaid/Medicare (“Dual Eligibles”)
Although there are SNPs (Special Needs Plans) for “dual eligibles”, it could be better to keep Medicaid and Medicare as separate plans due to the pharmacy benefits.    
3.      Specialty and/or Compounded Medications
Families need to make sure they know where to get prescriptions filled, if their insurance is accepted, and ask the hospital for an emergency supply.  Note:  some hospitals will forward a special formula to local chains if they agree to fill it. 
4.      Mailed medications/special storing
Some pharmacies will agree to have mailed medications delivered and held for families, which helps if a child has many emergency visits and a family may not be at home for the package.  If families can’t afford emergency generators for refrigerated medicines, parents can also ask a local fire department if they can store medicines there in a power outage. 
5.      Financial problems
Family caregivers shouldn’t try to make medication last longer by lowering a dose because it may not work as well or at all.  Help paying for medicines is available to families (see Resources.) 
Family caregivers can overcome obstacles to getting medications which will lessen stress on parents, and keep their child with a disability healthier.
-MyMedSchedule (online/app.)
-My Medicine Record free printable form
 Help paying for prescriptions
-Partnership for Prescription Assistance
-Pfizer Pathways (includes non-Pfizer medications)
Medical Prescription Tips for families
 Statewide Parent Advocacy factsheet
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