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, August 22, 2016

A Thousand Miles


I dedicate this post to the memory of Louis Peters,
my beloved father-in-law,
who passed away on July 28, 2016.
He was 86-years-old.

With Weston in 1999

He was a kind, supportive, loving, gentle and hardworking man.
An over-the-road truck driver who logged over 4.5 million lifetime miles.
To give you some idea of just how far that is...
It would be like driving to the moon and back.

Ten times


And as if that accomplishment was not impressive enough...
He did it without a single accident.
He was awarded the prestigious Safe Driver Award
by the state of Wisconsin.


But to me, he was more.
He was like a father,
always eager to chat about life,
the ups and downs and in-betweens.
He loved good jokes and good discussion
and could always seem to brighten even the most darkest of days.

We shared a similar temperament;
a heartfelt desire to be
free-spirited, fiercely independent and loyal to those we love.

He never ended a single phone call without telling me:
"I love you Lisa"

He was my rock, my grounding,
my counselor and cheerleader,
providing me with a constant supply
of a very special kind of unconditional love.


I miss you dear Dad
and will carry you with me
until I see you again.

Saturday, August 20, 2016

Wes Dickens

"He's haunted by something he cannot define."
-Cake



Weston is 17 and transitioning into adulthood. The built-in impatience and impulsivity that accompany an add/autistic profile make it difficult for him to tolerate the waves of emotion commonly associated with the over-production of hormones.

He is up, he is down, but mostly he is angry. We meet regularly with his long-time psychiatrist and have recently secured some in-home behavioral therapy. And although these interventions have been life-saving, to say the least, it is still difficult for Weston to identify and cope with teenage mood swings.

It was explained to us during his recent hospitalization that the process of communicating requires an ability to listen, comprehend, identify one's own feelings about the topic and express them appropriately. In Weston's brain there is a disconnect in this complex process making it very tough for him to tell us how he feels.

As parents we feel frustrated since we cannot address issues we know are bothering him.

To Weston it's even worse since he feels overwhelmingly helpless and abandoned, drowning alone in a pool of his own dark emotion.

Surprisingly however, at the hospital he met a young man, who like him, struggled with anxiety, depression and social isolation. The two became fast friends and found many common interests including a love of RAP music. Here, in the safety of the hospital setting, they wrote songs, developed "handles" for themselves and spotlighted their unique rapping styles in a production they shared with other patients.

Weston, alias "Wes Dickens" finally found an effective way to express his thoughts and emotions. In the RAP format, he was able to communicate. He purged a tangled-up ball of pent-up rage, releasing a mixture of emotion he had suppressed for many years.

 He healed.

He told me that he enjoyed listening to many RAP artists, like Cake and Eminem. I asked him what he liked most about this music?

"Mom," he replied emphatically, "Have you ever listened to the lyrics?

"No," I answered. "I don't really like Eminem's attitude."

"Yeah, that's why I like him," Weston replied firmly

"I'm not following you?" I asked.

"Everyone judges him, but nobody listens.....really listens. If they did they would hear his pain, the pain beneath the words. Some of the songs he raps really explain what it is like to be me."

He scrolled down his iPhone and read off some of the lyrics that resonated with him. I was astounded by the truthfulness of simple words that described a depth of pain.

Finally, I had a window into Weston's world.

And to the rest of the world
God gave you the shoes that fit you
so put em on and wear em and be yourself man
Be proud of who you are
Even if it sounds corny
Don't ever let no one tell you
you ain't beautiful

-Eminem

Friday, August 19, 2016

Blowout

I believe in Guardian Angels


If you are a long-time reader of my blog,
perhaps you remember a vision I had
of an angel perched on the roof of my vehicle?

I had this vision shortly before a near-miss traffic incident;
one I probably shouldn't have survived.

Well, it happened once again.

I cannot explain how I am still alive. 

Oh yes,
I believe.

Let me explain.

This summer, I am devoting my time to finding an appropriate school for Nick.

I am determined to find a safe and healthy school environment,
where he can build long-term friendships
and thrive within a close-knit community,
one that understands and accommodates his unique needs.

No easy task.

The new SPED Director and I have visited many private schools in the area.
Most of them located up and down the I-95 corridor,
a highly-traveled interstate freeway.

I was returning home from a successful visit to an ideal school,
(more on that later),
when I found myself cruising behind
a massive and overwhelmingly intimidating eighteen-wheeler.

Not just any eighteen-wheeler...

a dirty, monstrous, gravel-slugging dump truck carrying over a ton of stone.

The kind of truck that makes Stephen Spielberg's "Duel" truck...

look more like a kitty cat.

Anyway, due to my previously-mentioned close-call,
I am reluctant to drive behind trucks carrying stuff,
any kind of stuff,
especially heavy, flying gravel kind-of-stuff.


So I gently pull my vehicle over to the left-hand-lane 
and begin to pass the large, lumbering lug.

Just as I approach the behemoth's left-rear axle, I hear a tremendous:

"BOOOOOOOOOOOOM"

I see his rear inner tire explode in a noxious cloud of deep, black smoke.
The thick rubber tread unravels from the wheel like toilet paper.
It splits into two flying projectiles.
One large and deadly ribbon of rubber
tumbles haphazardly behind the rig
where I had been traveling only seconds before.
The other small piece shoots toward me
like an arrow sprung from a bow
and ricochets off my windshield
directly in front of my face.
Instinctively, I duck
as the molten missile
leaves a thick black smudge of rubber on the glass.
It bounces up and onto my roof
with a loud clang.

The scene unravels before me as if it were a movie playing in slow motion.

I think, this is it.
I am about to die in a horrific accident.
I am certain the driver will lose control of the thundering beast
and crash into my truck, sending me who knows where.

Instantly my mind's eye replays many a nightly news report
of harrowing tractor trailer incidents;
large trucks moving at high speeds
who experience blowouts


But miraculously, nothing happens
no swerving,
no crashing
no sound of screeching brakes
or crunching metal

The truck operator stays calm and in-control.
He de-accelerates slowly
holding the rig steady
as he maneuvers the gentle giant 
safely into the break-down lane.

I am completely safe.
There is no scratch or dent to my vehicle,
Just a solitary black smudge on my windshield
to remind me
of how fortunate I am.
to be alive.

You better believe.....

I believe

Friday, August 5, 2016

Smote


Please forgive my absence
I was engaged in a fierce but worthy battle

A battle to free Nicholas from an unhealthy school environment.

After many fiery discussions with
the SPED coordinator,
the SPED director
the principal
the superintendent
the school board 
and finally,
the Massachusetts State Department of Education,




Nicholas is OUT of our local public school.

I DID IT


I found the courage
to stand up to:

aggression

intimidation

betrayal

lies and deceit

to successfully protect my son from
abuse, alienation
and blatant disregard for his personal safety.

I secured his indisputable right to an appropriate education.

In fact,
the entire SPED department of our local school
has either resigned or been terminated.
A new director has been hired.
A very good one, at that.

HALLELUJAH


While I feel the thrill of a rewarding victory

from a battle hard-fought and won;

I am fatigued from the physical demand of constant combat.
I feel a mixture of emotion


There is joy


Joy, that my son will finally receive the environment, peers and community
he so humbly and righteously deserves.

But also there is a sense of loneliness;


a feeling of having weathered an evil that takes its toll on the soul.

Of enduring an indescribable hardship
that separates you from those whom you love.


It is like trying to break-free from the familiarity of a dark, deadly forest,
wrought with danger and difficulty.

Scratched and wounded,
I summon an unknown strength-from-within 
to free myself 
from the last tangled boughs of this dense, thorny thicket.


I tumble to the earth,
blinded by the brightness,
and scalded,
by the power of a lost sunshine
that now burns my pale and battle-scarred skin.


I am free


But relinquishing a sword that has served me well
does not provide me with comfort.


Transitioning to peace
requires a type of blind trust
in a fearsome opponent.
Thankfully, the new director is a man of great integrity,
with a deep understanding
of special needs programming. 

It is time for me to abandon the warrior spirit.
Adopt a peaceful persona.
Welcome the new road
that beckons brilliantly
with the solemn promise
of a beautiful new beginning.

A rejuvenating pathway
that feels familiar and welcoming
perhaps heaven-sent.

I must reacquaint myself with the warmth of the sun
breathe in the air
of a healthy new freedom
for Nicholas and me.



Sunday, May 22, 2016

Release the Kraken


Sometimes I forget who I am.

I become so engrossed in playing the game of special needs parent with the school

I forget who I am playing.

It is at these times I am thankful
for the unique individuals in my life
who hold up a mirror,
bonk me on the head
and remind me
of my fiery spirit


And what I must do with it

I am sorry to inform you, dear readers, that despite the success of the PWS presentation to Nick's classmates this year, he has struggled in school. He is lonely and sad, the only child in a substantially separate program. Anxiousness and depression have caused his behaviors to escalate. 

He has developed urticaria, a severe rash of unknown origin.


Shortly after this diagnosis, he told me that a student showed him his private parts at school. He identified the time, the place and the specific hand gesture. He said he could identify the student.

I contacted the school immediately. 

It took them several months to investigate my report. 

They responded back in writing, telling me that the results of their interview with Nicholas was inconclusive. They believed the incident never occurred.

WTF?

Nicholas does not lie. In fact, he is honest to a fault.

I reported what I believe to be sexual harassment and the school's lack of response to our local police, who said they would investigate.

I have not heard back from them.

My blood has begun to boil.

So, thank you Dr George,

who is quick to remind me:

YOU'RE A PIRATE...

IT'S TIME TO RELEASE THE KRAKEN


Sunday, May 1, 2016

A Tale of Two Cities

If you're a long time reader of our blog perhaps you remember the winter of 2014-15
the snowiest winter on record for the Boston area?


Of course, with record snowfall, comes record ice dams  Like many others, we experienced severe icing that caused water damage to our home.

After several negotiations with our tight-fisted insurance company, we received enough funds to de-mold the attic, gut-out the living room, add hardwood flooring, repaint the kitchen and repair our deck.

Unfortunately, my sensory sensitive children were unable to withstand the sights, sounds and smell of construction repair, so we decided to uproot the family and head outta dodge.

"Kinfolk said "Jed, move away from there!"
Said: "Coastal living is the place ya oughta be..!"
So, we loaded up the truck and we moved to New...buuurrrryyyy....
Port, that is....restaurants, coffee bars"


Anyway, I am happy to report that since it is indeed the year of the red, fire monkey, we turned lemons into lemonade and found a beautiful condo, for a great price, in the neighboring city of Newburyport, complements of our insurance company.

You may recall a post I wrote a few years back about the beauty of this historic city.




Of course our new living arrangements had to have the necessary prerequisite for Nicholas.


It also has a few other lovely perks
Like this view from our bedroom window.


And this lovely park where Muffy enjoys walking every evening


Not far from the condo is one of our favorite beaches,


While it has been tricky living in two places at the same time,
we are trying to see this move as a type of mini vacation.
Some much needed quiet time,
a healthy respite, that, for our family,
symbolizes our desire
to put an end to the unhealthy state of constant crisis. 


So far, it has been exactly what we needed.