Sunday, July 27, 2014

No More Secrets

Man is not what he thinks he is, he is what he hides.
Andre Malraut

I guess you could say, it is the dirty little secrets we hide behind closed doors that make us all human. We believe that if we hide our perceived imperfections and create a more perfect version of ourselves, we will be accepted by others. We can protect our fragile hearts from the excruciating pain of judgment, humiliation and societal scorn.

But when you are the parent of a child diagnosed with special needs you have no more secrets.

You cannot hide your child's differences.

Walkers, wheelchairs, and behavioral outbursts serve as disability trip wires alerting the world to our unwelcomed presence. We are exposed and vulnerable, helpless victims held hostage by the unwanted stares, comments and criticism of an ignorant public.

When you are here to teach the world, you lose the power to be inconspicuous.

You no longer blend.

You become the spotlight.

How you choose to use that spotlight is entirely up to you.

Most days you diffuse the comments and stares with hardened tolerance and polite unresponsiveness.

Then there are those other days, when you meet it with anger,



even retaliation.

But whatever emotion you chose...

You lose the ability to protect your heart.

I was reminded of this last week, at Nick's 6th grade graduation ceremony.

Pete and I arrive early to the school and enter the empty auditorium. We survey the rows of empty seats and chose two chairs next to the aisle way.  As parents of a child diagnosed with Prader Willi Syndrome, we know a behavioral meltdown during this kind of event is highly probable. We need easy access to an open exit.

Large public events are difficult for Nicholas. His sensory sensitive body is quickly overwhelmed by loud noises and bright lights. He is unable to connect with someone speaking from across the room. He loses focus and the ability to sit still. But perhaps his greatest challenge is the heightened anxiety issues that accompany his repetitive thoughts about his inability to access food.

Pete and I are nervous, we know we are pushing it. But denial is a powerful drug for desperate parents.

Children and teachers begin to file slowly into the room.

Two of Nick's teachers spot us in the crowd. Sensing our nervousness they part from the group and approach us to calmly explain the plan for handing Nick his diploma. Their small act of kindness soothes our fear momentarily and we are comforted. But their noble effort to shield us from pain is quickly shattered as Nicholas enters the room.

"I WANT TO SIT WITH MOM AND DAD!" he screams and every head in the room turns to look at Nicholas.

His sped teacher, Mrs. T is holding his hand and although he is wearing his headphones to deaden the sound of a noisy room, he is already overwhelmed.

In an effort to soothe Nicholas, she walks him over to where we are sitting and asks him if he would like to sit with us. It is a brilliant idea since sometimes simple changes to the routine is all that is needed to prevent such a dramatic response.

It works. Nicholas is quieted and takes a seat next to me.

The room is filled to capacity as the ceremony begins. Several speakers take the stage and begin to call the names of students who have earned special award. I laugh to myself, knowing my child will not be one of them.

The list of names seems endless. Nicholas is hot and sweating and it isn't long before the loud applause and droning sound of nervous speakers begin to erode his patience.

"I CAN'T TAKE THIS ANYMORE!" he screeches.

The woman at the podium stops speaking. All eyes turn to us. My checks start to burn. It is as if our bodies are being targeted by a deadly, red laser beam emanating from the focused and scornful eyes of a room full of angry parents.

It is quiet as everyone waits to see what we will do.

Pete and I lead the crying Nicholas slowly toward the exit.

I feel a hot wave of resentment coming from the parents around me, angry that we have ruined their need of a perfect ceremony.  I focus my eyes on the floor knowing that I do not have the strength to control the rage I feel inside toward their overwhelming ignorance.


Inside, my heart is saddened as I realize I have asked too much of my son. Selfishly, I have placed him in an environment he is not ready to handle. My need for normalcy and perfection has superseded his ability to endure such a show.

I pay for my selfishness.

Mrs. T leads us out of the auditorium, down the hallway and into the quiet confines of the motor room. Hanging from the ceiling is a large swing used to create proprioceptive input for the students who need it. It is the perfect instrument for calming Nick's outburst.

Pete places Nicholas on the swing and I begin to sing to him quietly.

"Row, row, row your boat, gently down the stream........."

Mrs. T heads up to the classroom and brings down his friend Alex who always manages to make Nick smile. Within a few minutes, Nicholas is quiet and comforted.

We head up to his classroom. Mrs. T sends a text to Nick's teacher Mr. P and asks if he could come to the classroom after the ceremony to present Nick his certificate.

It isn't long before the kind Mr. P arrives with a group of Nick's "typical" friends. They encircle his chair to officially present him with his diploma and a copy of his yearbook.

Nicholas smiles brightly. He feels happy connecting with this small group of special people. It is a quiet and intimate ceremony. Nicholas is surrounded by all of the people he loves most in the world creating a beautiful moment that is profoundly more meaningful to all of us.

As we drive home from this eventful day, my husband and I reflect on the chaotic experience and begin to laugh.

"You know Lis," Pete says. "There was a moment during the ceremony when Nick was screaming bloody murder and all the parents were shooting us dirty looks. But there was one guy standing near the back by the door. He looked me in the eye as I passed by and smiled at me kindly. That simple gesture comforted me and let me know that there was at least one person in the room who felt compassion for us and appreciated our difficult life."

I do not know the identity of the kind man in the back.

I probably never will.

Photo by Disney
But I will tell you this.... he helped me to realize that as parents of a child diagnosed with Prader Willi Syndrome, our "secrets" may be exposed to the world. But what is less obvious, and perhaps more important is Nick's unique ability to remove the masks of those who choose to judge him. He is like a mirror, reflecting the energy of the individuals who stare at him. He strips these people of their personal secrets and shows me exactly where they reside on their own spiritual journey.

Most observers who gawk or comment are scared, fearful, frozen or obnoxiously curious, displaying the character and actions of a childlike spirit.

But sometimes....just sometimes we are fortunate enough to find the hidden few who are truly enlightened. Angel-like souls who travel among us here on earth. Faithful, strong spirits unafraid to show compassion or stand beside us on our journey to learn new ways of assisting our special child.

Once again, it is my beautiful son who teaches me that it is we who are disabled, crippled by our need to keep our secrets. We repress our burning desire to embrace our imperfection and celebrate the true essence of what makes us worthy and unique.

 and in the process become less human and able to love.

It is our secrets that prevent us from living.

I am tired of being afraid to live.

I am ready to embrace Nick's humanness and desire for no more secrets.

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Lisa Peters writes about family life at
For more information about Prader Willi Syndrome visit

Friday, July 18, 2014

A Natural

Wil just turned 18 on the 14th. We decided the thing to do was throw a big party; go into his adulthood with a celebration, and a gathering of the village that has gotten him thus far. We gathered 125 of his closest friends, and that is only the tip of the iceberg in terms of how many people he knows, how many people have touched him, and how many people he's touched.

Jenn, Wil's 1:1 aide from 3-8 grade, not only came, but brought a copy of a piece he'd written in 8th grade. I share it with you now:


I have two hundred reasons why I don't want to go to college. It will take fifty-five hours to tell you the whole story. I'm going to give you three reasons. 1. I will miss my friends and family. 2. I'm sick of working so hard. 3. I want to skip college and be a dad.

I have been working for nine years straight. So after my thirteen years of schoolwork then I will be free.

Instead of going to college I want to have 3 kids. Alexander Mikey and Zackary. I will be a stay home dad. My kids can't go to the store with me until they are at least two. I don't want to deal with all the crying. They will be home schooled until they are three because the school doesn't have pre-twos. I would say to my wife that we have to have the same answers. If they have sleepovers then she would say yes and I would say yes. My kids will have everything. If my kids want to sleep in the same room then sometimes I will do it. Every fall we have to go to high school football games. I will love my kids.

I really am not going to college. I have other stuff I want to do.

Sandra, one of his preschool aides, came. She had put together a photo album of pictures from the two years he was in her class. Most were copies of pictures I'd already seen, since the preschool did an excellent job of creating memory books for us each year. But there was one, this one, that tugged, particularly, on my heart. The cock of the head, the sweetness, the effort it took him to coordinate his hands and eyes to do what he chose to do during free play: feed a baby. That's Wil all day long. Always has been, always will be.

Wil just spent a week volunteering with the 4-year-old class of Vacation Bible School. I got a message from a friend that said, "Please tell Wil thank you for being so patient and kind with my grandson. He's a natural with young children."

I've come to believe that whenever we're a "natural" at something, it's because we have past-life experience with it. Probably many past lives. Perhaps all of them. Lifetime after lifetime of practice that leads to wisdom, that leads to being a "natural." I truly believe Wil is going to find a way to be the "dad" he's always wanted to be.

Luckily for the world, it won't be just 2-3 kids he parents, but classroom after classroom of kids, year after year, until one day he's an old man, long retired from his "job," and arriving at a birthday party of one of his former students. He'll have with him a hug, a memory or two, and a place in that person's heart, forever.

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Carrie is a parent and advocate of a child with special needs and even more special gifts. She blogs at where this is pretty much her favorite topic. Carrie’s book, WIL OF GOD: Embracing the Relentless Love of a Special Child, is available in print on Amazon and all e-readers.

Friday, July 11, 2014

A New View of Freedom

Today I am turning over my blog to Kathy.  Kathy is Cary Lynn's only link left in Early Intervention.  A year ago she wrote this piece on my daughter.  The other day when I was cleaning out some files I came across this and I remember how touched I was that someone wrote this about my little girl.  I think I am going to frame this so I can remember what an awesome little person I have in my home and what an awesome person I have on Cary Lynn's team:)

A New View of Freedom
By Kathy Guisewite ~July, 2013 ~

This is Cary.  I have the honor of visiting with her each week. As an Early Intervention Professional, I’m supposed to offer her family encouragement and wisdom and playful suggestions as to how we can all best support Cary’s development.  And I do this with great cheer and devotion!!  But what actually happens each week is that Cary offers me encouragement and wisdom and playful suggestions as to how I can live fully and freely in this life.

Cary tells me with every visit that the best way to defeat the tyrants in the world is by way of laughter and noisy raspberries.
She reminds me that music is always the best medicine when you are sad or grumpy.
She also reminds me that music is always the added joy on happy, carefree days.
Cary says that when the battles are tough, it’s time to put on the attitude of “just try and stop me” and press forward no matter how many times you get knocked down.
Cary says if you really want to make a difference in the world then be who you are as best you can.
Cary says the best way to evoke change for good is to be happy and help others to find their own happiness.
When I think of freedom and what that means to Cary, I think it means being loved.  She doesn’t seem to whine about what she doesn’t have.  She doesn’t notice the differences in her world and mine… she just embraces what is and loves the gifts given.

Freedom means so much to so many, and we are all grateful to live in a nation where we are free to pray and love and explore and grow as we feel individually led.  But Cary teaches me that freedom is also a way of thinking and living no matter what life tosses at you.  Cary helps me understand that freedom is a gift of the heart and the spirit… bound only by the walls our small minds erect.

As Cary finds and loves her own freedoms, I realize that even in times of dismay… in my own home or in the wider world… we can each add to the hopes of freedom by living like Cary.  Don’t take no for an answer.  Don’t live smaller than your spirit.  Remember that your joy is a source of goodness in the world.  And when all else fails, seek the light, the beautiful light that fills us with hope for each new day.

I love you, Cary.  Thanks for helping me to remember to live free.

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

Wednesday, July 2, 2014

Riding in Cars with Boys

What is it about cars and boys?

Place any male child into a moving vehicle and their typically tight-clenched jaws become magically unhinged.

Every secret they keep, every question they ponder come spewing from their lips like the rapid fire of bullets sprayed incessantly from a machine gun.

Some of the best conversations I have ever had with Weston have occurred in the front seat of our vehicle. Whether we are traveling to or from school or headed to an appointment, it is here that Weston feels the most comfortable.

What is it about the cozy confines of the car that makes Weston want to spill his guts?

Is it an ADHD thing and simply the fact that we are moving?

Am I less distracted and more focused on listening?

Is it the lack of eye contact?

Or is it where we spend most of our time together?

Personally, I think there is some kind of magic energy, like the invisible force field that is said to envelope you when you sit beneath a pyramid. It is a power that boys seem to have trouble resisting, a kind of kiddie kryptonite designed specifically to make young males talk.

I do not understand why school principals or police interrogationists don't take better advantage of this unique and highly effective driving device that seems more potent in withdrawing information from the brains of boys than truth serum.

Today the power of the magic road riding device kicked-in on our way to the orthodontist.

It may indeed be summer, a time for relaxing and staying put for most individuals but for a busy mother with two children, chauffeuring duties seem to reach a crescendo at this time of year.

I make a right onto 133 and it begins:

"Mom, why are boys my age such punks?"

"What do you mean?" I ask.

"Well, they act silly in class, they swear all the time and talk about nothing but bums and boobs."

I resist an urge to laugh out loud as I remember a similar quality about the boys in my own freshman class.

"I think that is a pretty typical behavior for ninth graders."

"How come the girls don't act like that?" he asks.

"Hmmm," I say, thinking about his rather astute observation.

"The girls are all so pretty now, wearing make-up and nice clothes. They seem to hate all the idiots in my class," he laments.

"Well, maybe the boys are starting to feel the effects of testosterone, making them go a little crazy by thinking a lot about sex." I say tentatively.

"Yep, that's pretty much all they want to do," he replies straightly. "But the girls....they don't. It's like they are so much more mature. Why is that Mom?"

"Well maybe they are feeling the effects of estrogen and preparing for the reality of caring for children." Honestly, I have no idea if this is true....but it is all I can come up with at the spur of the moment.

"Yeah.....I think so too....Gee Mom it kinda sucks having to be mature, being the only one who is taking care of things all the time while the boys all behave like monkeys?"

I am surprised at my son's ability to see a different perspective.

 Do you ever wish you were a guy?" he asks.

"Yes, Weston",  I laugh. "I think you have just pretty much summed up how it feels to be a mother."

Who would have thought that a journey to the dentist would prompt such a conversation....!

I wonder if sitting in the front seat of this truth-telling, thought-provoking driving device will do the same thing for husbands?

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Lisa Peters blogs about family life at

Tuesday, July 1, 2014

Prevention and Wellness for Children with Special Needs-Part 2: How Family Caregivers can help with Physical Activity and Nutrition

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Did you know that 18% of children and 21% of teens are obese, not just overweight (source: Centers for Disease Control & Prevention {CDC})?  Children can get “adult” diseases like diabetes, high blood pressure, and high cholesterol due to obesity.  The two most important components in reducing obesity are nutrition and activity.

Useful information on nutrition is available from the CDC at  Similar information can be found in Spanish at The American Academy of Pediatrics (AAP) has endorsed the Bright Futures wellness guidelines.  You can access the Bright Futures nutrition guide by age. The guide explains concepts such as portion control and related topics like food allergies.  It can be found at  Information for families is also found at or Spanish  These resources include information on food substitutions, picky eaters, gluten free diets, etc.  Children who are overweight are likely to grow up as obese adults, so prevention is essential.
Physical Activity
Related to obesity prevention is physical activity.  Again, the AAP has endorsed “Bright Futures in Practice: Physical Activity” available at  There are activities for children with disabilities.  You can also find information on subjects such as asthma.  There is also a fitness guide from the AAP found at or Spanish  There are ideas on making time for fitness, involving the whole family and developing a fitness plan, and overcoming obstacles such as living in unsafe neighborhoods. There is also a special guide from the U.S. Department of Health just for girls at or Spanish  Body & Mind:  Physical Activity “is available from the CDC and is found at or Spanish at  “14 Weeks to a Healthier You” is a free online course from the National Center on Health, Physical Activity, and Disability at  There is also a list of accessible playgrounds at  Other organizations have peer buddies such as:
Ø  Little League Challenger Division
Ø  Miracle League
Ø  Special Olympics NJ
Physical activity is essential for good health for all children, regardless of ability, and there are ways to make activities accessible to them.   
Nutrition and physical activity are even more important for children with disabilities who may be more likely to have weight problems and resulting complications.  Parents of children with disabilities want the best care for their children, and this includes prevention and wellness.    
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