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.




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 embolden 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.

Wednesday, October 26, 2016

What, Me Worry?


I couldn't resist the MAD Magazine reference,
since their anti-political outlook
seems particularly relevant these days

Anyway, Nick is headed to Boston Children's Hospital on Monday for a colon manometry procedure and I am worried.

What is colon manometry you ask?

It is a procedure that places a catheter into the colon and measures the pressure of the contractions that help move food through the bowel, evaluating gut motility. Since Nicholas has been diagnosed with low muscle tone, perhaps it is not surprising that his colon "muscles" are not performing adequately and he suffers from issues related to chronic constipation.

Anyway, I had been doing pretty good at keeping calm and preparing for our upcoming stay.

That is until I began to receive calls like this one from Children's:

"Yes, hello Mrs. Peters, this is Martha from Boston Children's. We know that Nicholas suffers from anxiety and were wondering if you would prefer if he received an NG tube for his med delivery?"

"Say what...?"

or this one...

"Hello Mrs. Peters this is the Motility Department over at Children's and we would like to reschedule his appointment to an early morning time frame since he suffers from Prader Willi Syndrome."

and finally

"Hello Mrs Peters, this is Boston Children's Hospital calling to ensure you received the two day cleansing procedure for Nicholas' upcoming procedure? And is there anything we can do to make his stay more comfortable. We have already spoken to Child Life Services."

I guess when your child is a regular at Boston Children's Hospital, they get to know you.

It appears that Nicholas has become somewhat of a hospital rock star, receiving preferential status and accommodation.

I know I should be pleased by all of this...but so far, all I am is nervous.


  

Saturday, October 15, 2016

Crash Dummy Parenting

Parenting a child diagnosed with complex medical needs
feels a lot like being a crash test dummy.


You're driving along, driving along, driving along.....


When suddenly....

WHAM

You hit the wall doing 90 miles per hour.


Despite a head-on collision
Strangely enough, you remain intact


There are no bruises, no blood, no broken bones

How can that be you ask?

Certainly after experiencing something like this...


There should be nothing left.
Right?
But again and again and again
somehow you manage to survive.


And so, with that said,
While I am happy to report that Nicholas is thriving at his new school,
We have uncovered a potential cause of his chronic urticaria.


What is urticaria you ask?
It is nothing more than a fancy name for a rash of unknown origin.
Nicholas has been suffering from it for over a year.

We visited with his current neurologist, endocrinologist and gastroenterologist,
added visits with a dermatologist, allergist and even a new psychiatrist.
We survived 3 hospital stays,
where his lips and ears swelled uncontrollably,
withstood another overnight EEG
and were evaluated by countless numbers
of white-coat Harvard Med School grads,
who scratched their heads and shrugged their shoulders,
wondering what on earth to tell us.
I swear I have earned my place as an honorary professor
of these droves of fledgling physicians.

Until eventually, we discovered on our own,
that Nick was suffering from chronic constipation.
Enemas and high doses of Dulcolax flushed him out
and improved the severity of his hives.

His gastro doc believes that Nick's colon is not working efficiently,
probably a result of his low muscle tone.
They call this condition a colon "motility" issue.

And so dear friends,
my brave young man will be spending Halloween evening
(his most favorite time of year) btw
and the next few days
admitted to Children's Hospital

WHAM


Where he will need to fast for 24 hours.
Keep in mind his food-seeking diagnosis...!
He will have a catheter placed in his colon to measure his gut contractions.
This will determine if an area of the colon is not working properly,
or if it is, in fact, his entire colon that is disrupted.

Currently, there is no cure for this disorder.

If the results of the test confirm a lazy colon,
we may need to consider surgery
to remove the area of his colon that is not operational
or consider
what's called an appendicostomy,
an operation performed by only a few physicians in the country.

It is a surgical procedure that attaches the appendix to the belly button
and forms a kind of access port for performing a less invasive, more effective enema.

WHAM AGAIN


If any of you have seen the movie:
Miracles from Heaven starring Jennifer Garner
you will recognize one of these physicians
and the Gut Motility Clinic at Children's Hospital in Boston.


And so dear friends,
I am reserving my energy
trying to find within myself
that peaceful place
so I may support my brave son
to overcome together
yet another difficult hardship.



Wednesday, October 12, 2016

Presidential DebHATE











From within the disgruntled masses came an outspoken man.

In the name of the moral majority,

he persuaded a passive public,

to target specific groups and individuals.

He blamed them for the state of the nation

and labeled them as undesirable.

Using fiery, unrestrained speech,

he spewed hatred and vindictiveness,

convincing an apathetic people to build walls and erect camps,

that lead to the execution of millions of innocent men, women and children,

and plunged the world into a war of epic proportion.

How was he able to do this you ask?

Because the public, the party, the country allowed it.

There was no outrage, no voice of reason.
.
No one covering their ears, and screaming for it to stop.

I am an American.

Raised by the belief that our founding forefathers designed the Constitution of the United States

to protect its citizens from those who would have you believe

that NOT all men and women are created equal.

I am covering my ears and screaming at the top of my lungs

ENOUGH

I am pleading with the public, the party, the country,

STOP HIM PLEASE

Take back our precious humanity, our tolerance, our ability as human beings

to renounce hatred,

to revere, once again,

all that is gracious,

all that is civil

all that is precious within us and inspires us as a nation.





Sunday, September 25, 2016

A School for Nicholas

It has been a long journey,

over several months.

I have risked great personal injury (or at least flying truck tires)

and sacrificed many a sunny summer day

in an effort to find a safe and appropriate school for Nicholas.

Finally, I believe, I have found one.


Children diagnosed with PWS vary greatly in their educational profiles. Some are able to fit into the public school environment with little to no support. Others, require a residential setting.

Nick is what I call a middle man.

Cognitively, he is unable to attend in a public school lecture-based program. He requires small group instruction in a setting that is sensory-subdued and food-safety-secured.

This type of program is difficult to find, even in a collaborative or private school location.

One thing that did become immediately clear to me during my many school visits was that special ed programs often take place in the most dreadful environments.

Small, windowless classrooms, tucked away in the bowels of buildings that are often unclean, cramped and cluttered with outdated furnishings and ugly appliances. Ugh.

As if to say, these children are not worthy of our attention, our dollars or our compassionate care.

But that is a post for another day.

There were several things I was looking for in a school for Nick:
  • Clean, spacious, small to mid-sized school community
  • Peers at his level of cognitive, behavioral and social ability
  • Compassionate and eager-to-learn staff
  • Food-safety controllable classroom
  • PT, ST, BCBA and OT services
  • Sensory rooms and services
  • Community-based programs for vocational training
I believe I have finally found it.


I am still waiting for the intake meeting to be scheduled,

but if all goes well he will be starting on October 3.

I am hopeful that I have found a place where Nick can be happy and safe

and thrive once again.

Please keep him in your thoughts and prayers dear readers.

I am ready for a new adventure to begin.