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.




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
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, explosion, fire
From an earthly perspective:
eruption, comets, meteors, sun spot, solar flare

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
has 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



Saturday, December 17, 2016

Trophy Mom and Dad

Yesterday, Nicholas brought his Christmas project home from school.

He was asked to make a trophy.


and dedicate it to his hero.



We are not unlike other selfless special needs parents
 who battle through the minefields
 of heart-wrenching medical issues
in an effort to improve the lives of their children,

Our needs as a couple,
and as individuals
 are often neglected
as we carry out our duties
with a faithful sense of determination
so we may persevere through the unimaginable.

So, I guess it is appropriate
we celebrated our 20th wedding anniversary
at Children's Hospital in Boston with Nick.

But perhaps our teamwork
and super human effort to endure,
did not go unnoticed by our sensitive son.



Thursday, December 15, 2016

The One Thing

Of all the expensive toys, gadgets and fancy merchandise
available for Christmas delivery this year, 
what do you think is the one thing Nicholas wants most in this world?

I'll give you a hint...

It's smaller than a breadbox
and costs less than twenty bucks.




As for Weston.....

It's either this:


or more preferably.....
this

:

Wednesday, December 7, 2016

What About Weston?

As a parent of two children diagnosed with special needs, it is difficult for me to balance my time and advocate equally for both of my children.

Since Nick's disability is pretty much in-my-face with his unique set of medical, behavioral and food-seeking challenges, it is often he, who gets the bulk of my immediate attention.

At school or in the public setting it is the same story, folks can easily see Nick's challenges and need for accommodation. It is Weston who is invisible.


Weston looks like a typical teen. He is healthy and tall. He will look you in the eye and shake your hand with a smile. He is handsome, helpful and polite.

But underneath, Weston carries a similarly disabling diagnosis.

Although he has many strengths, Weston is a young man who is significantly behind his peers socially, emotionally and intellectually. He is unable to make friendships, join clubs, play sports or fit into a public school setting. Academically, he is eight years behind in math and five years behind in English. He has been called a faggot, a retard and had rocks thrown at him in gym. He has become depressed and anxious but unable to explain in words exactly how he feels or what he needs to be successful. He has told us he wants to end his own life.

You may recall his recent hospitalizations.


So for these past few months,

I have been focused intently on Weston.

(although Nick did require some serious medical care.....but more on that later)

Weston is a senior in high school.

And much like the difficulties I experienced with Nicholas, I find myself once again at odds with our public school system, who believes, despite his delays and difficulties, Weston is ready to graduate and function independently in the world.

Say what????????


FYI, if you are not familiar with special education law, children diagnosed with disabilities are entitled to receive special ed services from their school district until they are 22.

But of course, all of this costs money.

And so the pirate in me was unleashed, again

Only this time, the crusade began for Weston.

I unsheathed my sword and stood face to face with that same fearsome opponent.

Zack Downey Deviantart

But the conflict was a very heated one.

We could not reach an agreement and headed to a pretrial hearing in Boston with the Bureau of Special Education Appeal. With no attorney to represent us, I had no choice but to enter the battleground alone drawing swords with a bumptious and arrogant school attorney hell-bent on bringing down the emboldened and derelict mother.

But the judge in this case was intelligent, insightful and impartial. He sought to thoroughly understand the case and suggested the parties compromise.

He suggested that Weston be placed at a collaborative school for a 45-day evaluation where he would be studied in an impartial school setting and evaluated for his preparedness and ability to transition into the world. We would reconvene at the end of March to check on his status.

We agreed and since Nick was already enrolled in a collaborative program, the school suggested we place Weston there as well.

Hallelujah, Hallelujah,
Hall....e.....lu....jah!

I did it.
I faced the beast and held my own.


But now is not the time for celebration.
Home alone, Weston is still struggling,
So I arranged for some in-home therapy services, hired a new therapist and visited with another psychiatrist to get a second opinion on his medication management.


This one is for you my dear sweet Weston
It is time for us to find the road that leads to the happy and healthy future you deserve.


I am now ready to sail to some uncharted island in the south pacific to drink some rum and rest me weary bones.

Tuesday, December 6, 2016

The Set Director

Nicholas is an artist.
But he's not a painter, a sculptor or even a photographer.
He is, instead, a set director,
 possessing an innate ability
to create a simple scene that evokes a powerful emotion.

Using toys and everyday household items, he creates scenes like this:


or this,
his pumpkin family

or this,
his indoor grill


or especially this
his son, Mok


I found Mok tucked carefully in his bed
with his blanket and music box
while Nicholas headed merrily off to school.

Yep, Steven Spielberg sure ain't got nothin' on Nick.



Thursday, November 17, 2016

The Power of Small

I don't know if it's Nick's calm energy
or his gentle spirit
that attracts

small and gentle creatures

by his side.

During a nature walk
at his new school,
a tiny bird sat gently on his hand.


The chickadee comes to those who understand the power of small things.
Small things that we do consistently make great differences.
Something very small can make a big difference in someone else’s life.


I am searching for small.