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.




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 the 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.


Monday, November 7, 2016

Different

To say that Nicholas and I spend a lot of time at Children's Hospital would be an understatement. It is, in a way, our home away from home.

Nick's bed

My bed

During these visits we have become very adept at shelving our emotions and soldiering on to survive.

Together, we suck it up
we carry on
and brush it off when it is over.

It is a routine we are accustomed to performing.

We do it without much thinking. It has become a way of life.

But last week, our visit to Children's was different.

Nick endured challenges that defy simple explanation.

He persevered as always, with steadfast bravery and relentless resilience.

But this time, my ability to brush it all off was disrupted.

I was thrown off by this difficult challenge.

Something changed deep down inside.

Something that set me adrift,

separating me from the folks who surround me in life

and disrupting my ability to acclimate back into the world.

I don't know how to describe it,

a perpetual state of PTSD maybe (?),

except to say that I have developed a deeper, more profound respect for my son

if that is possible.

My hero
  

Sunday, November 6, 2016

Mothered by Mother Nature

I will admit it.

I am a gal who spends entirely too much time locked inside of her brain.

I think, think, think, plan, plan, plan and worry, worry, worry.

Sometimes, however, Mother Nature comes to my rescue.

It is as if she is scolding a small child.

Boldly,

in front of my face,

she places something so beautiful,

so  breathtakingly divine,

it stops me.

My mind,

and obsessive thinking,

are halted

by a kind of silent screeching of brakes

as I stare in amazement at the wonder of the world.

A powerful reminder
 to enjoy the beauty of what is directly in front of me
and obscured by too many restless thoughts.

"Are you awake?"
she asks.

Friday, October 28, 2016

Monkey Business



OK, so was I right about the Red Fire Monkey Year or what?
click here to read

Holy shit!

This year has been a steady stream of

turmoil and transition

intensity and upheaval

passion and predicament.

As I mentioned dear readers

monkey years bring chaos

but also,

they bring some much needed change.

The tornado

may drop you in a new and unfamiliar environment


but the journey may prove to be a magical one.

Have faith ye fine readers.

All will be well.


The monkey almost always lands on his feet.