Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 14, diagnosed with Prader-Willi Syndrome and Weston 17, 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.




Monday, February 6, 2017

Tom Brady and Me Too

I live in the Boston area.
So it goes without saying that I am also a sports fan.

If I had to use one word to best describe a Boston sports fan, it would be faithful.

Yes, we here in New England are faithful fans,
not because our sports teams are champions,
but because for many years,
despite their spectacular play, they were not.


There is no victory more rewarding,
than one that comes after many years of excruciating loss.
(or controversy)

But to me
what I find most interesting about the
Patriots, Red Sox, Celtics and Bruins
is just how often
they are a reflection
of exactly what is happening in my own life.

Last night's game was no exception.

In the world of sports, there is much we can learn about life.


If you are a long time reader of our blog
then you know how much I admire Tom Brady. (click here to read)

I believe he is a man
who operates much like a parent
of a child diagnosed with special needs.

Let me explain,

In the first half of Super Bowl (LI), Tom Brady was attacked on all fronts. He was powerless to the onslaught of the Atlanta aggressors and the endless stream of continuous chaos. The red jerseys kept coming, pounding him to the ground, again and again. It was as if his opponent read his game plan and inhibited his ability to make any forward progress. Despite his best effort, he could not stop the bleeding.

Sound familiar?



While all of this was happening on the field, Coach Bill Belichick was on the sidelines observing and writing furiously onto his clipboard. He was, if you will, behaving like a mad scientist, looking for weakness and designing an experiment to expose the cracks in the opposing team's defense.

Hmmm?

The team came back to the second half of the game with a new strategy.
What was this brilliant new plan you ask?

Hold on to the ball.

It was that simple.

And they performed this new strategy in Coach Belichick style
 with quiet determination
substance above flash
small well-executed plays
all day long
Tom Brady made short quick passes
to a variety of receivers
holding on to the ball
for a series of first downs
and an incredible total of 466 yards.
He made slow steady progress up the field,
tiring the young, depleted Atlanta defense
and running down the clock.
Several Patriots players contributed to the win
by making key sacks and miraculous receptions.
 With quiet focus,
the team made many small successfully executed plays,
that mounted to the big win in the end.

Under the steadfast and unwavering determination of Tom Brady,
and his ability to sustain steel-like focus under extreme pressure,
he led his faithful team to victory
 with a brilliant performance
that comes from many years of operating
at a heightened level of play.

Feeling all too familiar
to a family that operates under similar circumstances.

Congratulations Tom
on the game of your life.
(and ours)


You are our hero


And to the entire Patriots team


You are our inspiration.

Oh, and by the way,

My new motto for the year?



HOLD ON TO THE BALL

(Weston first day of kindergarten)

I dedicate this post to my Dad

There could be no more faithful Patriots fan

Monday, January 30, 2017

Persecution

per·se·cu·tion
ˌpərsəˈkyo͞oSH(ə)n/
noun
  1. hostility and ill-treatment, especially because of race or political or religious beliefs.

    "her family fled religious persecution"

    synonyms:oppression, victimization, maltreatment, ill-treatment, mistreatment, abuse, ill-usage, discrimination, tyranny; 


When ALL human beings from seven random countries,
are forbidden by law to enter our country,
simply because of their nationality and religious belief,
it is a form of persecution
and a violation of the principle from which this nation was founded.

It is an unconstitutional act
and should be a grave concern to all of our nation's citizens

refugees
looking to escape religious persecution

When we no longer offer our shores as refuge
to those searching for a better life,
we devalue our heritage
and depart from our core values as Americans

Lady Liberty's message must now read:

Give me your tired, your poor, 
Your huddled masses yearning to breathe free, 
The wretched refuse of your teeming shore. 
Send these, the homeless, tempest-tossed, to me: 
I lift my lamp beside the golden door.”

as long as you do not live in:
Iran, Iraq, Libya, Somalia, Sudan, Syria, or Yemen.
BTW, the pilots from 911...?

15  Saudi Arabia,
2  United Arab Emirates,
1  Egypt,
1 Lebanon
The single most deadliest terrorist attack on US soil.
The Boston Marathon bombers?
2 Chechnya

Immigration reform is an important issue in this country.

We can do it without persecuting human beings,
profiling religious beliefs, denying basic human rights
and disrespecting random nations with whom we seek to establish peace.

Persecution leads to isolation, alienation, anger and revolt.
With the stroke of a pen, we are less safe and further than ever from world peace.


I am a proud descendant of Albanian immigrants
who sought a better way of life
free from political interference
and who made significant contributions
to the betterment of this country

I believe in the importance
of this American principle
and the right of all human beings
and nations
to be free from persecution

Friday, January 27, 2017

The Good Doctor

OK, so remember I told you how special needs parents
are a lot like the mad scientists of the parenting world?

Well, we are also the good doctors
(whether we like it or not)

Queasy stomach for medical procedures?
Walk it off.
You don't have a choice.

In enduring hospitalizations
or complex medical procedures,
your child will take his cue from you.

So if you're nervous, stressed or scared,
while your child is being treated,
You better prepare yourself
for the powerful return of energy
that is about to bounce back at you


If you are not a special needs parent,
and you have a queasy stomach, you might want to stop reading here.

Nick's appendicostomy surgery is scheduled for March 13. Last week, we met with his wonderful new surgeon, Dr. Dickie. She is an expert in the area of bowel management and began her process of educating the clueless parent on the up-coming surgery and necessary pre-op procedures.
I consider myself a seasoned special needs parent, having endured many years of g-tube feedings, AFO's and EEG's. It takes a lot to intimidate me.












I was reminded however,
in rather spectacular fashion,
what it means to be humbled.

Dr. Dickie explained that before the surgery, we needed to prepare Nick's lower GI tract. To do this we needed to begin a nightly regime of enema treatments. I explained to Dr. Dickie that the enemas we had performed at home in the past were not effective. She looked at me and smiled. Then withdrew from her cabinet, a surgical kit.

Nothing up my sleeve.....presto

WTF?

And began to instruct me on the proper use of a Foley catheter. These devices are typically used in folks with bladder issues, however, Dr Dickie has found them to be useful in the management of chronic constipation.

The kit consists of a tube that is inserted into the rectum and then inflated with air from a syringe. This prevents the enema solution from sliding back out too quickly.

An IV bag is filled with enema solution, a tube from this bag is then connected to the Y end of the  balloon catheter and delivers the solution into the intestines. The procedure takes about an hour and if done correctly will produce a bowel movement and evacuation of a blocked intestine.


Easy enough right?

Try telling Nick that.

Dr. Dickie explained that we would need to create a fun and relaxing environment for Nick so he would be comfortable when we performed this nightly routine. She asked that we report back to her with our results.

And so, home we went with a bag full of supplies and a mind overwhelmed with the realization that our lives, although hectic enough, had just become more difficult.

Revolt against the absurd

Don't worry dear readers, for Nicholas, in his infinite ability to embrace the word resilient, has endured with an unusually calm sense of strength and courage. He is my hero.

But more on that later.

p.s Did I ever mention to you, that before I was married, I sold plastic tubing to engineers who designed medical devices like g-tubes and Foley catheters?

Thursday, January 26, 2017

I Love Lucy...?

If you're a longtime reader of our blog, you are familiar with the gentle spirit and warm heart that defines my youngest son. He loves new-born babies, fluffy rabbits and soft, furry kittens, And although he just celebrated his 15th birthday, he thinks and behaves like a child who is much younger.



Sometimes I forget.

Over the holiday season, his new bus driver, introduced him to all of the Peanuts cartoon characters by giving him his first Charlie Brown Christmas DVD. Needless to say, Nick loved it. The sad little branch transforming into a colorful glowing tree, appealed whole-heartedly to his altruistic idea that kindness and cooperation has the power to transform sadness into beauty.

He loved the movie so much; he played it over and over again.

Since Nick's birthday arrives shortly after Christmas, I decided to seize upon this genius new opportunity. I bought him a collection of Peanuts presents: a Snoopy backpack, a Woodstock lunchbox, a Peanuts puzzle and last but not least, a Charlie Brown Great Pumpkin DVD.

So what if Halloween was months ago?

The movie captured the essence of the Magic Season, Nick's favorite time of the year.

Birthday gift-giving couldn't get any easier than this.

If you're unfamiliar with the Magic Season, click here to read about it.

So, you can imagine my surprise when Nick came storming into the kitchen and slammed the dvd down onto the counter.

BAM...!

"That's it!" he said emphatically.

"I am NEVER watching this movie EVER AGAIN!" he shouted.

"What happened?" I asked, surprised by his overwhelming reaction.

"Did it freeze up when you were watching it?" I asked, wondering if perhaps it got damaged by an unusually neglectful Amazon elf?

"NO!" he said, folding his arms across his chest, his silent cue that he is about to go postal.

I got down on one knee and looked in his eyes, now flooded with tears.

"Nicholas, what is it?"

"I DO NOT LIKE LUCY.....!"

"Why don't you like Lucy?" I asked.

"She took Linus's blanket. She is so mean."



"Oh Nicholas," I said, "it gets better if you keep watching it."

"No Mom," he said,

"I just can't take it."

"If it makes you feel better, he does get his blanket back," I assured him.

"He does?" Nick asks tentatively.

"He does," I answered.

"No Mom, I just can't watch her be so mean, ever again."



"OK Nick, I understand. But I'll leave it right here on the counter just in case you change your mind."

"Ok," he said tentatively, "But I don't think I'm going to....."

And there the movie sat, day after day after day.

"You know Nicholas," I said one day, "Lucy is a big sister. Sometimes big sisters are bossy."

"They are?" he asked.

"Yes, they are, but they are also very helpful. If you watch the movie you will see how Lucy takes care of Linus and gives him his blanket back."



"She does?"

"Yep, she does. I guess if you don't have a big sister it's kind of hard to understand."

"Arrright Mom, I'll try to be brave," he said with a sigh.

It took a few days

and then a few more

until eventually

the movie disappeared covertly from the counter.

I had to hold back my laughter

when I heard a very familiar piano melody

come blaring from the living room.



again and again and again


Sunday, January 22, 2017

No More Monkey Business

It is time to say goodbye to the red fire monkey
and the intensity of change he brought us last year.

Phew....!

The dawn of a new year celebration begins Jan 28 - Feb 15, 2017

If you are a follower of the Chinese New Year,
you could have easily predicted the outcome of the United States Election.

It is the Year of the Red Fire Rooster
Or in other words, it's all about me!

Are you ready for your wake-up call?

World peace?
Sorry, not going to happen.
Nations focus on domestic issues.
at the great expense of
diplomacy, foreign relations, and humanitarian effort.

There will be puffing and posturing
as nations crow boastfully
to see who rules the hen house,
which as you know is
a noisy, nervous and chaotic environment.

The hen house can be productive
if there is cooperation
There is hope for advances
and a variety of worldwide solutions
with the dawning of a new day

But alas, the rooster's motto is
"my way or the highway"
cooperation?
does not compute.
There is a fogginess
an inability to see things clearly

Protest, protest, protest
on a worldwide scale
civil unrest
as citizens find their voices
and learn how to crow
loudly and often
as roosters do best

Rooster is metal, red is fire
symbolizing a slow and steady burn
which may indicate conflict/war, missiles, rockets
explosion, fire  
From an earthly perspective:
eruption, comets, meteors, sun disturbances, forest fire

Sorry folks but another "red fire" year
means continuation of change.
Unlike the monkey, however,
the rooster
does not always land on his feet.

And so the motto for the year is:
As ye sow, so shall ye reap

The change that occurs this year 
will be a direct result of the energy
you devote.

Nothing comes for free this year,
 but hard work will be rewarded

On the health front,
bird years are often accompanied
by flu-like epidemics and respiratory illnesses

On a positive note, medical advances abound
and may lead to a "cure"
as well as better management
of physical and mental health issues

For some more good news

The metal rooster fares very well
for both industry and technology
There will be great leaps and bounds
in the areas of new energy,
invention, gadgetry, weapons, automotive, internet

New companies and high tech professionals
will rise to prominence
Entertainment will also see an influx
of flashy new talent and brilliant artistry
icons who will rise quickly in popularity
Creativity flourishes under a red rooster year
so go ahead and write that book

Science, science, science
and more science
A year filled with interesting
and mind-blowing new discoveries.
Space exploration, travel, discovery
The sky is the limit

The rooster is hard working and loyal,
so it is a good time for family and friends

He's about talking the talk and walking the walk.

He is flash above substance
so remember
this year it's all about appearances
Be sure to dress for success
and you will be sure to get the job or the girl

Saturday, January 21, 2017

Defcon 3

Children diagnosed with Prader Willi Syndrome are hungry all of the time.


The only thing that differs among them; is their drive to actively seek food.

For some it is overwhelming and immediate.
For others it is a slow progression over time.
But eventually, all of them will engage in covert eating.


We are fortunate.

While Nicholas struggles with many medical and behavioral challenges, his food seeking activities have always been mild and easily managed.

For the first 10 years of his life, we simply kept all of our food hidden away. This "out of sight, out of mind" philosophy was sufficient in keeping Nicholas safe.

With the onset of puberty however, Nick's drive became stronger, making it necessary for us to lock our refrigerator and pantry doors. But still, things like bread, butter, fruit and sugar were left out on our counter tops, safe from the grasp of our growing boy.


That is until yesterday 
when I reached for a slice of warm bread from our toaster
and noticed the empty butter dish
streaked with lines
of greasy fingerprints.
This would not be an unusual occurrence
in the Peters household
except for the sight of a well-licked spoon
resting beside it.

Oh no, I thought to myself....Nicholas!

I realized with a cold sweat and a broken heart,

I failed

I failed to protect my son from access to food.
Tears poured from my face
as I gathered the family
to explain what we all knew was coming.

It's time.

Time to secure all food in the house
and protect Nicholas for his own safety.
 No more snack packages
or half empty soda cans left by the bed side.
No sugar, salt, butter or bread left out on the counter

Nick's good health depends on our vigilance.

Mother Hubbard's cupboard
ain't got nothing on us
as we prepare to achieve
a heightened level of preparedness  
and operate at a level that is now officially at:


Not First

ONE




Tuesday, January 17, 2017

The Mad Scientists of the Parenting World

I have discovered that special needs parenting 
is all about the science.

It's about
research
ideas
experimentation

It's about
controlling variables
designing formulas
and going back to the drawing board

It's about being fearless and perhaps even a little bit crazy.

But mostly it's about
convincing others to believe
what you have discovered.

Yes, special needs parents are indeed
the mad scientists
of the parenting world.

"Nothing in life is to be feared; it is only to be understood."
Madame Curie

Curiously, I am engaged in experimentation with both of my children.

Let's start with Weston, who began his 45-day evaluation at his new school. The good news is he loves it there. The bad news is that during this transition, his longtime psychiatrist resigned. He is now seeing a new one.

During our first few visits with her, we described Weston's journey navigating the waters of medication management. This involved trials of many different medications in an effort to help Weston find relief from symptoms of anxiety, depression and ADHD. Previous dosing methodology however, was to try meds that were effective on other children diagnosed with similar disabilities. This was not always effective for Weston since it did not take in to account his unique rate of metabolism and genetic make-up.


His new psychiatrist decided to try a new technique called genetic pharmacological testing. She took a saliva swab from inside his cheek and sent it off to a specialized genetic lab who coded his DNA/genetic make-up and provided us with a list of medications, that, based upon Weston's genes would perform most effectively. It also detailed the proper dosing for each medication, taking the guesswork out of prescription management.

Armed with this new and important information, she began a new medication trial, eliminating some existing meds and adding some new ones with the long-term goal of treating Weston safely and effectively.

Since it involved the changing of meds, Weston did not feel safe doing this at home/school and requested that he be hospitalized to ensure his success. I am proud of him for having the courage to know what he needs.

So, while Weston is evaluating a new method for medication management in one hospital, the other son is headed to Children's Hospital in Boston tomorrow for a surgical evaluation of his on-going GI issues.

Which btw, is another important family celebration day....Nick's birthday.

Would you expect anything less from us?

Anyway, the surgery we are considering for Nicholas is a new procedure designed for the treatment of children with poor gut motility issues. It is called an appendicostomy. This surgery attaches the appendix (on the inside of the body) to the belly button (on the outside)and forms an access port much like a g-tube button. This port can be used to attach a catheter that can flush out the intestine, creating a new and easily accessible area to administer an enema. Intestinal flushing can also improve the ability of a lazy colon so it may begin to perform better.

For more information on what's called the Malone Procedure, click here.

Results of Nick's GI motility study showed a delay in movement as well as a period of central nervous system confusion. This is when the CNS mixes up its signals to the intestine. As a result, stool is not moved in a continuous manner and can become backed-up or stagnant. Stagnant stool is a bad thing for the body since bacteria can form. A build up of stool is also dangerous since it can create an intestinal blockage or a rupture which is a life threatening situation.

We are visiting the surgeon tomorrow to discuss the advantages and disadvantages of performing this kind of operation and to answer our long list of important questions. If we decide to go ahead with the procedure, we will schedule a date for surgery.

Since there is so much going on with both children,
I have begun to keep a lab notebook for each of them.

What did I tell ya?


Mad Scientist or what?

I will keep y'all posted

She Blinded Me With Science
Thomas Dolby

It's poetry in motion
She turned her tender eyes to me
As deep as any ocean
As sweet as any harmony
Mm, but she blinded me with science
"She blinded me with science!"
...

Tuesday, December 27, 2016

Dear Reader

Wishing you:

Joyous and happy holidays.


Some quiet time to recharge.

\
 New Year.......New Joy


One World


One Peace

Good Will to All

Our very best wishes to you
our dear readers