Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 12, diagnosed with Prader-Willi Syndrome and Weston 15, diagnosed with Autism/Asperger's/ADHD. It's the ups, the downs, the joys, the sorrows and most importantly, the beauty of living...a life less perfect, a life more meaningful.



Friday, August 29, 2014

Heart Beatings

I find that some of the most difficult moments of special needs parenting occur when things are quiet.

I am seductively lured into a false and addictive belief that as a family we have achieved some kind of normalcy. For a moment, the rancid and toxic air that is our life, clears, I drop my warrior-like vigilance and begin to breathe the cool, clear oxygen. The refreshing air fills my lungs with a powerful force and I am rejuvenated, happy once again to be a parent like any other.



It is at these times of unusual quiet, when my heart becomes most vulnerable. It is when I am sailing serenely through life's doldrums when I am most often viciously attacked.

WHAM.

Like a victim of a drive-by-shooting, I have been targeted.

A single bullet fired from an anonymous attacker sails powerfully toward me and hits me squarely in the chest.

For a moment, my heart stops its life-sustaining rhythmic beat.

I cannot breathe.

And like a prize fighter stunned by the force of a single, strategically placed blow, I drop.



Yesterday my heart was the victim of a yet another hit-and-run attack.

It has been a chaotic year for our family. We have been plagued by many unusual medical issues and difficult school placement negotiations. We looked forward to summer and the slower pace that accompanies it.

To relieve our stress, Nicholas and I spent much of our summer vacation meandering aimlessly throughout our quiet neighborhood, walking and talking quietly together.

The philosophy of "nothing to do and all day to do it" served us well throughout the summer and we learned to relax.

This week however, we have begun our preparations for Nick's new school year. One of them, to instill a more militant food security procedure in his classroom.

Nicholas and I decided that we will buy him his own lockable cabinet for school. In it, he will place his lunch. I will separate his meal into six separate snack bags. On every hour (9 am, 10 am etc) he is allowed to choose one bag and eat its entire contents. This allows him to be eating all day and minimizes the "when is it snack time?" questions for the teacher.

It is the same principle and technique we use at home. Nicholas loves his daily job of opening and closing our refrigerator and pantry. He loves keys and locks and containers. He loves having a job. He delights in locking everything up securely at night and opening it again in the morning.

Nicholas was very excited to incorporate this same food security procedure at school. Relieved, I think to learn he would not need to struggle with his food anxiety in the school environment.

I was feeling good about his happy response to this change.

I took a big gulp of the cool air.

He was so excited about this new procedure, he began to role play with his Dora Kitchen....a toy device we purchased years ago to help alleviate some of his obsession with food preparation.

He dragged his pink plastic appliance into my kitchen and set up his work space directly beside our refrigerator. Pretending that he was at school, he opened and closed the doors of his kitchen. Then, quite suddenly, he stopped. He looked at the big fridge and then at his own Dora fridge and noticed quite astutely that something was missing.

"Mom," he said to me with a matter-of-fact tone and a big smile,

"We need to buy me a lock for my Dora refrigerator."

And my quiet unsuspecting heart took yet another painful blow.


Sunday, August 3, 2014

No Vacation from Prader Willi Syndrome

Vacation is a time for rest, relaxation and fun, a time to slow down and enjoy life. For our family it's about spending time with Mother Nature.

The Flume
Franconia Notch State Park, New Hampshire, July 2014

But when you are a family with a child diagnosed with Prader Willi Syndrome, trying to "relax" can present some stressful challenges.

Food-seeking behavior is the most defining aspects of PWS. When Nicholas is sick or anxious, this aspect of his disorder can become more pronounced.

During vacation, Nicholas becomes anxious. Mostly as a result of food ambiguity. There is a loss of our typical mealtime routine. The rigid food schedule, we employ during the year, is a high fence we use to enable Nicholas to feel more relaxed about eating. He knows when food is coming and what to expect. Removing this food structure and strict mealtime schedule can cause Nicholas to feel anxious. During vacation it is not unusual to hear him ask,

"When are we going to eat?"

"Did you remember to bring my snacks Mom?"

"Can we eat our lunch here?"

Wherever we go on our vacation, we must always prepare for the questions about food.

To avoid unexpected tantrums, no matter where we are in the world, we must remember to bring along snacks, to distribute during his usual snack time. Most importantly, we must always be sure to communicate to Nicholas exactly when and where his next meal is coming. If we do go out to eat, we try to order the more healthy food options for Nicholas. This is not always easy when others are indulging in high fat choices.

If we do indulge, we try to give Nicholas a smaller portion

Also during vacation, there is a loss of our typical at-home food security protocol. Family members adopt a more laissez-faire attitude regarding Nick's whereabouts, creating a dangerous scenario where there is no food security and no one watching Nicholas, almost guaranteeing the potential for a life-threatening consequence.

For us, vacation is a time for added vigilance and thoughtful preparation.

When I first learned about PWS, I worried about what we would do during summer vacation. I am not aware of any hotels, inns or rental properties, in the entire world, that offer lockable fridges or secured pantries. There are no luxury resorts available with closeted kitchens. In fact, often it is just the opposite, where vacation properties offer open-concept dining and living areas.

But there is one thing about living with PWS....as a family you learn to adapt.

We find ways of making it work.

We persevere.

Here's what we did this week:

 
We rented a home with a double-door fridge.
We attached our own heavy-duty bicycle lock before bed each night

 
We placed all our food in one pantry
Using this heavy bench and stools,
we blocked access to the pantry at night.
For some children diagnosed with PWS,
 this set up would be easily removed
So far, for Nicholas, it works.
 
At night, the kitchen was off limits to all of us. No extra snacking or nighttime raids on the refrigerator. No typical vacation over-indulging.
 
In a way, it is what's best for all of us.
 
Whatever Nick needs, we learn to roll with it.
 
We accept it.
 
Nick experiences other vacation anxieties, so we also try to incorporate his typical waking and sleeping routine. A rested and refreshed Nicholas is always a more flexible vacationer, a boy willing to experience new things.......??
 
 
Or maybe not....but more on that later


Tuesday, July 29, 2014

Outta Dodge

At last, we are on vacation.

I think "on vacation" are the two most relaxing words in the entire English language.

We arrived early to the White Mountains of New Hampshire, eager for our much needed respite to begin. Unfortunately, the cleaning crew had not finished preparing our rental home. So, in true Peter's problem-solving fashion, we found a nearby scenic rest area to visit on the banks of the Saco River.


We climbed onto a few rocks and splashed our toes in the cold, clear mountain water.


Did I mention the water was cold? Brrrrrrrrrrrr.........

Weston pulled out his fishing pole and cast a few lines, but the water was moving too swiftly.

We frolicked in the water for awhile and then searched the neighborhood to find the nearest ice cream stand. Is there anything more important to find while you're on vacation? We quickly found a perfect spot where my two teen transportation enthusiasts were thrilled to find this...

 
This big wheeler was more alluring to my children than the ice cream.

 
Even Nick's symptoms of PWS took a back seat to this formidable four by four.


I think if this vehicle were real, I probably wouldn't see my children for the rest of our vacation. Hmm perhaps that's not such a bad idea...huh?

Sunday, July 27, 2014

See Ya Later, Alli.......Gator

Nicholas has a babysitter named Susan.

She is very pretty. But more importantly to us, she is pretty on the inside.

Last week, she took him to one of his favorite places in the entire world, the park. Now while many children may admire the playground equipment or the large sandy beach area in this environment, Nicholas was more impressed with this:

 
This is a John Deere Gator
 
He nearly fainted when he saw this kindly gentleman surveying the welfare of the park grounds in this Cadillac-of-Lawn-Care vehicle.
 
Nick is easily influenced by his very cool elder sibling, Weston, who happens to be, without a doubt, a true aficionado of all things related to heavy equipment and transportation. He is also wholly responsible for Nick's latest obsession with John Deere farm equipment.
 
So, in an effort to please the Weston-Wanna-be, our brave, sitter Susan had no problem asking the accommodating grounds keeper if he wouldn't mind transporting the farm equipment fiend for a few laps around the park.
 
He gladly obliged.
 
And around and around they went.
  


Saturday, July 19, 2014

Family Man

Last week, out of the blue, Nicholas announced to the family that he was going to have three children, Mok, Dora and Milly. None of us was surprised since Nick's warm heart and gentle nature would make him an exceptional parent. His selected nomenclature of his chosen offspring inspired of course, by his undying support of Nick Jr. television programming.

Today, however, upon further contemplation of this important responsibility, Nick announced that he changed his mind and would now have only one child.......Dora.

Yes folks, it appears that Nick's love for Dora is everlasting. And while the rambunctious rescue critters from Paw Patrol caught his eye for a brief interlude, the dark-haired beauty still, and always will be, his first and only true love.

I asked Nicholas why he changed his mind about having three children:

"Well," he explained, "I thought about it Mom and I think three babies would be too much work."

"Oh, that's very smart, " I said, and wondered if living with the high-energy Weston had influenced his decision-making process.

"Why did you pick Dora?" I asked.

"Because I thought she would be a quiet baby," he answered.

Now I am absolutely certain that it is indeed Weston, and his accompanying heightened noise level, who has inspired Nick to change his mind.

"I am going to adopt her," Nick adds.

"Where are you going to do that?" I ask.

"At the baby store," he answers confidently.

"Where is that located?" I ask.

"It's in our garage," he answers quickly.

Sunday, July 13, 2014

Clean as a Whistle

The summer sun warms our bare arms as Nicholas and I walk down the quiet, country road. We gather our usual collection of tiny stones to drop down the sewer when Nick notices a perfect specimen. He runs over to the patient pebble, bends over to collect it and as he rises he lets out a long breath of empty air.

"Wssssssshhhhhh"

"Hey Mom," he says excitedly, "I whistled!"

He purses the flaccid muscles of his checks together and tries to create a steady stream of air to push through the too large hole he has formed with his lips. Once again the end result is the same and instead of a crisp whistling sound emanating from his happy face, out comes a loud, long rush of music-less air.

"Awwwww," he says disappointedly and tries again.

"Wssssshhhhhhh"

And suddenly it is as if a poisonous arrow has been sprung from the bow of an anonymous assailant; a deadly spear pierces my unsuspecting heart as I realize that the effect of low muscle tone has prohibited my 12-year-old son from performing this important childhood rite of passage.

As the mother of a child diagnosed with special needs, these are the moments that hurt most.

It is these indistinct moments in time when you are finally feeling successful at creating some childhood "normalcy" when something like this will happen, a kind of in-your-face reminder that debilitating disease will always be there to rob your child of simple pleasures.

I feel powerless and angry.

I resist the overwhelming thought that plagues me.

I have failed my son.

These sudden moments of realization feel like personal attacks.

Like I am the sole victim of a special delivery "fuck you" from the universe.....designed specifically to tear my fragile mother's heart to shreds.....again and again and again.

But my stubborn persona resists the urge to wallow in special needs parenting paranoia. Instead, I decide to succumb to the pain. I feel it, turning my head away from my son and allowing the hot tears to rush over my checks.

Nick continues to blow air from his mouth.

"Wsssssshhhhhh"

"Wssssshhhhhh"

He is not bitter or resentful.

He's having fun.

"Mom," he says, trying to re-engage me. "Look, I'm doing it!"

And although he is nowhere close to creating the perfect sound of a clean, clear whistle,

still he believes.

I stop my downward spiral into self pity and try to embrace Nick's catchy optimism.

Together we blow air through our mouths, creating some silly sounds.

"Phshhhrzzzt" Nick blows.

"What was that?" I ask and we both begin to laugh hysterically.

 
 
About Hypotonia:
Children diagnosed with Prader Willi Syndrome experience hypotonia or low muscle tone. This is a condition that causes muscles to lose their ability to contract properly, causing the muscle to become weakened and flaccid. It is not a condition related to muscle strength, so no amount of weight training or conditioning will cure it. Instead, hypotonia is a result of a deficient neuronal response from the brain caused by a malfunctioning nervous system. Many internal bodily functions rely on the proper functioning of our muscles. Things like breathing, eyesight, digestion and even heart rate are negatively effected by this weakness. 

Friday, July 11, 2014

Bloop, Bloop, Bloop

Life is good for the Peters family. We are enjoying the long, warm, sunny days and leisurely pace of the summer season. No one, however, appreciates this "slow motion" more than Nicholas.

In previous posts, I have often compared him to this fine fellow.


For it is truly the simple things that mean the most to Nick.

Backpacks, candles, fireplaces and garage door openers are just a few of his favorite pleasures.


To me, summer is a time to "hang" with Nick and be reminded once again to enjoy those small special little moments in life that often go unnoticed..

During the summer, Nick and I often walk "the loop" of our neighborhood. The loop is a small collection of country roads that start and finish at our driveway. We listen to the birds calling in the trees, we count the puffy white clouds and watch for neighbors who may be opening their garage.

Nick's greatest joy, however is when we drop pebbles into the sewers and listen for the corresponding "bloop" of the stone plunking into the water.
 
There are six sewers on our journey around the neighborhood so we need to be sure to find a good collection of small stones that will fit through the grate.
 
 We drink plenty of water

 
Bring along our trusty headphones.
 
 
And listen to the purest sound of a stone dropping into the water.
 
Bloop
Bloop
Bloop

Sunday, July 6, 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,

sadness,

humiliation,

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 is 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.

"NOOOOOOOOOOO. DON"T DO THIS TO ME." Nick screams.

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 those who stare. He strips people of their personal secrets and shows me exactly where these folks 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.


Monday, June 30, 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 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 blow jobs 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 to husbands?


Monday, April 21, 2014

Run Strong Boston


In honor and tribute to: Martin Richard, Sean Collier, Lingzi Lu and Krystle Campbell


Dedicating this post to Nick's 6th grade teacher, Mr. P who is running again this year.

Boston Stronger