Monday, October 28, 2013

Hungry for Answers

Sometimes I feel like my life is defined by the answers I give to certain questions.

How old are you?

Where do you live?

Do you have any children?

But as the parent of a child diagnosed with PWS, there is one question I do not like to answer.

It is a question comprised of only four words.

A question every parent of every child ever diagnosed with Prader Willi Syndrome will be asked.

The answer to this question will expose the intensity of your child's affliction and define exactly where you are on your journey coping with this bizarre syndrome.

When I hear it, a little piece inside me dies.

"Are you locking yet?"

All children diagnosed with Prader Willi Syndrome will develop an insatiable appetite. For some, this uncontrollable desire to eat occurs within the first few years of life. For others, it is a slow but steady interest in food that builds in intensity over the years until eventually the child is unable to control his eating. In either scenario, the end result is the same, parents must begin to lock their food.

For my son Nicholas, the hunger was like a slow moving hurricane. At first, it was a few light sprinkles, followed by a steady rain, a downpour and eventually...the monsoon.

During his early childhood years, Nicholas was spared from the merciless attack of the constant hunger of this deadly aspect of the syndrome. He was in a way, invisible and safe from the jaws of this voracious animal.

But tales of the incomprehensible struggles of our compatriots moved us. There were descriptions of padlocks drilled into kitchen cabinets and bicycle locks wound around refrigerator door handles. Piles of empty food containers found hidden under beds and heart wrenching stories of the uncontrollable rage of a child who is denied food, screaming from a hunger that is  fueled by a ferocious need to eat.

Although Nicholas was not exhibiting this behavior yet, deep down inside I knew it was coming.

For 11 years, I lived with a constant fear, a needling finger of doubt tapping me on my shoulder, taunting me, whispering in my ear...."it's coming"

Every day, I wondered when?

When would my son lose his battle with this ravenous beast?

When would we begin to lock?

This week I received my answer.

During my weekly run to the grocery store, I purchased a large bag of grapes and placed them on the bottom shelf of our refrigerator. I ran upstairs to put away a few supplies. When I returned to our kitchen, there was Nicholas with the refrigerator door open, his hands busily plucking at the bunches of plump fruit.

I stopped short in my tracks, I was speechless and immobile. It was as if I slammed head-first into a concrete wall of a new reality.

For a child without PWS, this raid would seem like typical teen behavior. In fact, had it been Weston pilfering grapes, I would have praised him for choosing such a healthy snack. But this was Nicholas, and this covert act was the first time he helped himself to food in the fridge.

Nicholas was no longer invisible. The beast had found his missing prey.

It was time for us to lock.

I was surprised in my search to find a solution. There were a variety of locks available for purchase online. I bought a simple lock and key mechanism. I realized that as he gets older and hungrier, this may not hold up to his more focused attempts at food seeking. But for now it was a good first step.

It took a few days for the lock to arrive. In that time, I noticed the grapes had completely disappeared. Any reservations I had about locking were quickly dissolved.

When the lock arrived Pete installed it quickly onto our fridge.

The sight of it made me angry.

To me, it was a symbol of hopelessness, a shiny metal reminder of how helpless I was at protecting my son from the torturous hunger that consumes him.

I asked the question that every parent of every child ever diagnosed will ask again and again and again.


In our culture, food is synonymous with love. Holidays, parties and special gatherings are times for over-indulgence, a pouring out of our love for one another. Locking all access to food feels, in a way, like we are denying our son this love, denying him his right to a happy life.

Burning tears blurred my eye sight. I quietly brushed them away as Nicholas came up beside me to inspect Daddy's work.

"What's that Dad?" he asked curiously.

Pete knelt down to speak directly to Nicholas. I was thankful for my husband's bravery.

"Well Nicholas," he explained matter-of-factly, "We need to be sure that no one eats after supper. So we are locking the fridge."

"You are?" he asked.

"Yes," Pete answered.

"Who will have the key?" Nicholas asked and I knew he was worried that perhaps he could find it.

"I will," said Pete.

"Where are you going to put it?"

"In a secret place that only Daddy knows."

"You are?"

"Yes, I am. No one is getting in the fridge all night."

"Oh, thank you!" said Nicholas and he hugged Pete tightly.

Nicholas was visibly relieved, happy I think, to know that he did not have to fight a battle he knew he could not win.

His happy response to our strict food enforcement taught me a valuable lesson.

Sometimes, all I see is his suffering.

I do not see his resilience and his steadfast spirit.

I do not listen to his subtle answers to my difficult questions.

Today he taught me that sometimes simple approaches can solve the most overwhelming challenges.

By locking our food, we alleviated his stress, kept him safe and more importantly respected his need for our assistance.

Perhaps there is no greater love.

For info on our refrigerator lock, go to:
Please forgive me.
We live in Boston,
 where folks here are born die-hard Red Sox fans

Go Sox
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Lisa Peters writes about family life at Please feel free to come visit us. To learn more about Prader Willi Syndrome or to make a donation, please visit our national organization at

Thank you for reading.

Friday, October 25, 2013

Our identities

Remember that movie in 2009, My Sister's Keeper? There was line in that movie that struck a cord with me about parenting a child with special needs.
"What are you then if you aren't a momma b**ch fighting for her kid?"
(Maybe a spoiler alert? Can it be considered a spoiler after 4 years?) The mom's sister said these words to her about how much she'd lost herself to fighting for her kid. The daughter had cancer and was in remission but it returned and attacked the organs in her body causing her kidneys to fail. Since diagnosis, the mom drove the cab (dad said) on how they did it all; including genetic selection for the birth of their youngest child so she could be a donor for the sick sister with various cord, blood, plasma and bone marrow. The mom had quit her job and had what seemed like a life dedicated to only keeping her daughter alive, at a cost to her other children and her relationship with her husband and her relationship with herself. But the family was portrayed to be close knit and in tune with each other.
I'd be lost in my parenting role if I didn't have the other facets that make me who I am. I am fairly certain that I wouldn't be as an effective advocate, volunteer, friend to other kidney moms if I wasn't also a friend, business owner, wife, mom, volunteer outside of the special needs world.
Honestly, I don't know how people do it. I don't know how they handle the day in and day out of parenting sick kids without the comfort of the identity outside of that role. Being all of those other things allows me to be the kind of mom I am to my kids. Now I realize that parenting sick kids has the propensity to remove you from certain events and roles because of the unpredictability of The Life. But hanging on to facets allows one to slide in and out of the other roles when the situation allows.
I like to think I'm pretty decent at holding on to all the sides of my identity that make up the configuration of who I am. But it's an internal struggle and I have to fight to hang onto them, especially when the ebb and flow isn't ebbing and flowing in my family's - or my - favor. I will say that my role as the kids' mom has altered all of those other identity markers - wife, friend, daughter, sister, aunt, volunteer. Some in a better way, some not. But they are what make me who I am today.
And for today, that is enough. Momma Beotch and all.

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Julia Roberts recently shut down her personal blog Kidneys and Eyes after 9 years and focuses all of her blogging time on a community she co-founded, Support for Special Needs. She loves long walks on the beach, Diet Coke, and naps. Married to Julian for nearly 20 years, they laugh at their life a lot. 

Friday, October 18, 2013

Cumulative Injury

It started with a twinge in my right hip, exacerbated every time my Lab, Flicka, pulled from the leash I held in my left hand. Having been a guide dog, she was trained to walk on the left, and there ain't no getting her to switch sides. Much of her good training has gone out the window, however, and now she pulls and sniffs and is in general, a pain to walk. She is also 63 pounds and strong, when she pulls, I go wherever she pulls. Unconsciously I've learned to brace myself from the pulling by planting my right leg when she starts to do so. Over time, I've developed a cumulative injury, making my whole right side - hip, thigh and knee, sore.

I've tried massage. I've tried resting it. I've tried holding the leash in the other hand. I've tried not holding the leash at all, but attaching it to my waist. I've tried putting Arnica on it. I worried and worried that preparing to walk a marathon, would only make it worse. My common sense told me it was silly to keep moving, using muscles that were in pain to start with.

What I discovered, was that when I began training and we walked for hours at a time - without Flicka, my whole right side actually felt better. Over time, it continued to improve, and after walking 26.2 miles on October 6th, it feels the best it's felt in months.

Raising a special-needs child is a cumulative injury. It hurts. It's hard. It hurts. It's hard. It's unrelenting and no matter what we try to alleviate that, it still just is. And the bracing. I brace myself every time the phone rings. I brace myself every time I open the back pack to see what horrors of homework are there to ruin my evening. I brace myself every morning before he wakes up, preparing myself to go into the day ahead. I live in a near-constant state of bracing myself for something, and it's exhausting.

After 17 years of trying and trying to figure out how to make it stop hurting, I've begun to wonder if the answer isn't also counter-intuitive: maybe leaning into it, releasing the brace, powering through, taking the time away from the child as often as we can and exercising the other half of us to balance the side that is way over-used and taxed, perhaps that is the answer.

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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, October 11, 2013

Self-Made Advocate/Activist

Earlier this week, I showed my Health Communication undergraduate course the documentary film How to Survive a Plague. It's a powerful film about HIV-positive men and the various self-made activists of the late 1980s and early 90s in the US who insisted that the nation pay attention to AIDS as a national health crisis.  It's about self-advocacy, alliances, powerful rhetoric, iconic staged protests and self-made scientists.  My students were mostly stunned to learn of the history of HIV as a health issue prior to the development of drug therapies that slowed the progression of the disease in 1994.  I was working in New Hampshire in 1992 at an AIDS service organization and trying to help the community deal with many gay men coming home from Boston and New York to die. Needless to say, it was heady times. Watching How to Survive a Plague
brought that time back to me, when I was much younger and much more hopeful that with a little bit of activism, the world really would be a much nicer place during my lifetime. I imagined advocacy and activism as something one did and achieved--as if on a linear trajectory. Boom. Done. HIV/AIDS cured. Discrimination ended. Onto the next project. But humans don't behave that way, and as history shows us, we repeat our mistakes again and again. We treat new diseases as plagues when we don't understand them. Equality is never achieved entirely, it's something struggled for and sometimes it is won for a little bit. 

But more importantly, what this documentary got me thinking about is how for years, I have been an advocate for patients and people with disabilities and those living on the margins.  Maybe that is what people mean when they say my daughter is lucky to have me as a parent.  I was already primed to fight like hell for her.  I was not afraid to ask questions and I have no illusions that there is an Oz living behind the curtain fabricating some conspiracy to keep gene therapies from curing my daughter's rare disease.  I am angry that while people are dying of rare diseases and infections, people's ideologies can literally put research and science to a halt.

According to the Global Genes Project:
"One area where the devastating effects of the government shutdown aren’t getting much public attention is basic biomedical research. What’s happening to the thousands of researchers and billions of dollars dedicated to understanding human disease and development? This reporter talked to a government biomedical scientist about the shutdown’s effect:

The more things change, the more they stay the same.  And somehow, I keep on advocating, and trying to be an activist in my little ways. Keep on fighting the good fight people!   

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When Kirsten isn’t teaching Health Communication at the State University of New York, she tries to be a good advocate for the good of humanity, the environment and all living creatures, but spends a lot of time just craving a good cocktail.  She is also the mother of two awesome seven year old girls and she loves living in Vermont.


This is just a short post.  Today while many of you will be reading (or not:) ) I will be in court. Today we will be celebrating A-Day.

So many times we struggle with our kids.  The doctors, therapies, equipment, day to day survival that when we find moments of joy we are over the moon.  Today is our moment of joy.

Today we will stand in front of a judge and become a family.  Today Cary Lynn looses her status as a foster child and gains the status of treasured daughter.  She always was from the minute she came home, but now we will have the paperwork to prove it.

The child who was born to a heroin addicted mother at 24 weeks, who everybody gave up on not only lived, but continues to grow and thrive.  She is a miracle and a daily blessing in our hearts and home.

So today join me in celebrating and welcoming our daughter into our forever family.  I love you baby girl!

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Amy Fields is a mother, advocate, and still thinks no one really reads these blurbs:).  You can find her at her other blog, Many Kinds Of Families.  

Saturday, October 5, 2013

Sweet Memories

I keep an online journal (a facebook page!) chronicling the journey of my 14 year old son who just happens to be autistic. I am so proud of him and really enjoy sharing his progress. Mind you, we do have days that are not so great and in order to remain real, I also share those moments. The following are facebook updates that have made me smile this year.

January 2013

It's late; I sneak into Nick's room to tuck him in. He stirs, although snuggles back down. 5 minutes later I am hunting high and low for my glasses. I go back to Nick's room and quietly shuffle around looking for those damn glasses! Next minute, a hand pops out from under the bedclothes and clutched in that hand are my glasses. All is right with the world. 

Nick: Gave the dog an over enthusiastic pat (with his foot!). The dog yelped in pain. 

Nick: Looked to me and made the sign for "sore". 
Me: "Ouch, poor dog. You need to be gentle". 
Nick: Went to the dog and gave him a gentle pat on the head.

We got seriously lost trying to find our friends house. I was muttering at the husband as we were over an hour late. Nick gets our attention.... he holds up his fists and makes the 'sign' for "cross". He then said... "". Very appropriate! 

February 2013

Me: I popped some red capsicum into my mouth and said "yuk, this tastes horrible" and I made a funny face. 

Nick: Laughed.
Nick: Picked up piece of capsicum and put it in my mouth.
Me: Made another funny face and shook my head... "Yuk, I don't like it".
Nick: Thinks this is a great joke and goes to do it again.
Me: "Yuk, I don't want any more!"
Nick: Looks around and spies the dog... he then proceeds to try and open the dog's mouth to feed him the piece I didn't want! 

Yesterday we went to the Hypermarket to buy a few groceries. Just a regular mum and her regular kid doing a weekly shop. Cruising the aisles, finding the items we needed, checking out the toy section. Hanging out together, stopping, starting, looking, sharing, smiling and relaxed. Go Nick!

I threw Nick so many curveballs this evening and he just took it all in his stride! Unexpected trip to other side of town then home again. Stop off for takeout supper. NO bath!!! Brushed teeth BEFORE pajamas's ! NO bath!! Gone is his need for rigid routines... gone!

I am standing at the bench peeling a carrot. I pause and look over at Nick, who is sitting at the table. He senses that I would like him to join me! He stands up, makes the sign for sleep, lies on the couch and pulls a cushion over his head. Love a little rebellion! 

March 2013

 I called out to Nick.... "Dad is going to the airport!". Nick came running through, iPad in hand.... He had the Proloquo2go app open and was pushing the button for "goodbye, goodbye, goodbye, goodbye......"

Sometime last year I decided that I wanted to get my boy onto a plane! Well.... come June I am going to follow through with my plan! With the help of my mother ~ although she doesn't know this yet!!!! 

April 2013

Nick's communication is really coming along.

We were revisiting Old MacDonald and Nick was making the sign for bird, although it wasn't the bird sign that I know. I show my confusion by screwing up my face ~ he then starts saying "uck".. and I still don't get it!! I call for Thomas to bring the Lightwriter. Nick then types the word "duck".

Nick dumped his lunch bowls etc into the sink and then snuck off with the iPad. I stood next to the dishwasher with a bowl in my hand... AND PAUSED. Hehehe... he came running with a huge smile on his face and we then stacked the dishes! 

So, we went out for supper. To a restaurant. It was dark. It was raining. WE TOOK NICK! He missed his bath and his TV time. He did GREAT! 

May 2013

Nick is making me smile this evening.... he is trying so hard to speak and is at the stage of sounding out letters to spell a word. He asked for a ... and I understood what he was saying. Never thought it would happen! 

I parked outside school.

Nick went to open the car door.
Me: "oooh, hang on, here comes a car!"
Nick: stops what he is doing and looks out the window.
Nick: "car, car"
It's going to be a good day.

June 2013

Nick has just been to his *first ever* movie! It was LOUD and there were lots of scary moments throughout the movie. Nick held my hand tight and at times he hid behind his sweatshirt. He laughed and he danced and at times he said "car". He LOVED it. #roaringsuccess

It is very hard to know what Nick understands. He has just pointed to the cupboard in which our Mbona bag is stored. I said to him... We are not going to Mbona BUT we are going to go on a plane to CT. He very quickly went to another cupboard, opened the door and pointed to the suitcase!!!

July 2013

Well, Nick has now experienced his first plane ride in over ten years! He was an absolute star. No stress whatsoever! 

I am loving Nick's new word.... "Go".

There is nothing more heart warming than watching your kid walk into school, bag on his back.... and then he turns to look at me and wave goodbye! Sweet boy.

Driving home from school... Nick made the sounds "s...t...o" and then tapped me on the arm. I gave him a questioning look. He then pointed to the road sign that said STOP!! 

August 2013

We were making juice and Nick went to the cupboard to collect a glass..... I mentioned that I also needed a glass. He took the glasses off my head and put them on my face!! 

Yesterday we had the BEST haircut experience ever! For the first time in 14 years I was able to sit back and relax and watch the proceedings! Although Nick had the iPad he continually checked out to see where I was! 

Told Nick that his bedroom was being painted, therefore he would have to sleep in the spare room. Hmm, nope.. no way did he want to do that and he hotfooted off to his room. On went the light and in he went... he gazed around the room and checked out the mess. He quickly turned, made the sign for sleep and put himself to bed in the spare room!! Well, that was easy! 

Nick: Placed 3 glasses next to me!
Me: "You would like some juice?"
Nick: Nods his head for "yes"
Me: "We going to need some oranges!"
Nick: Rushes off to the fridge.
Woo hoo..... he is loving his juice!
Note: He wasn't even bothered with the change of colour!

September 2013

Nick was rummaging through the fridge looking for the jam (I stopped buying jam months ago). Anyhow, I offered him marmite or peanut butter.... Instead of saying "no", which is fairly standard practice... he chose the peanut butter and actually tried some on his toast. He wasn't keen BUT he tried it! HUGE! 

Nick has just had his bath.... as he leaves the bathroom I think I see him makes the sign for "eat". As he goes out of sight, I comment, "huh, Nick wants to eat!". The very next second he pops his head around the door and shakes his head for "no"!! 

I loved putting this post together for Hopeful Parents. Spotlighting positive, interesting and lovely progress works for me. It keeps me hopeful.

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 You can find Di and Nick over  The Bright Side of Life and facebook!

Tuesday, October 1, 2013

It’s Heeeerrrreee - What Families Need to Know about Healthcare Reform NOW!

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It’s fortuitous that my blog due date is the same as the launch of the Marketplace for healthcare reform.  Families will be able to pick plans by shopping at the “Marketplace” or “exchange” which will compare health plans starting October 1 for coverage that will be effective 1/1/14.  You can still keep your current insurance from your job or switch to a new plan.  Getting healthcare for your child with special needs as well as the rest of your family will help all family caregivers.

There are different levels of plans ranging from bronze to silver to gold to platinum.  Keep in mind that the plans with the lowest cost will mean families have to pay more “out of pocket” for copays (your part of the bill) and deductibles (how much you have to pay each year before the insurance covers.)    And remember you can’t be turned down if you have a “preexisting condition” (a health problem you had before signing up.) 

People under age 30 can apply for a “catastrophic” or “bare bones” plan and there are also exceptions for people who cannot pay for insurance.  However, 90% of people without insurance will be eligible for free or lower cost care. 

You can also get dental care as part of your plan or pick a separate dental plan. 

You can have someone help you pick out a plan but please see this tip sheet on preventing fraud

 What Else Families Need to Know 

-Make sure your doctors are in the plan you choose.

-You may get help paying for plans based on your income.  The Marketplace will automatically figure out if your family is eligible for “tax credits’.

 Plans will cover 10 “essential health benefits:” 

  • ambulatory patient services

  • emergency services

  • hospitalization

  • maternity and newborn care

  •  mental health and substance use disorder services, including behavioral health

  • prescription drugs

  •  rehabilitative and habilitative services and devices (such as physical/occupational/speech therapy)

  • laboratory services

  •  preventive and wellness services and chronic disease management

  • pediatric services, including oral (dental)  and vision care
Also preventive services like screening or shots must be covered by your plan without a co-pay!

Note for People with Disabilities

The Marketplace will only pick one type of plan.  People with special needs may also be eligible for Medicaid and/or Medicare as well a private insurance.  If you have questions,   contact your Family-to-Family Health Information Center found at

 Resources or 24 hour hotline (800)318-2596
Information on the Marketplace and getting help to pay for insurance
Find out what healthcare terms mean. 

To find the Marketplace in your state and see how to apply online:
Finding help in your state:
Certified Application Counselors (local help)

 Health Centers
Having insurance results in better health and preventing illness from becoming more serious.  Sign up today at the Marketplace!
Remain Hopeful,
Lauren Agoratus is a parent/advocate who 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