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.

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....


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.
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


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.


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


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


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.

Monday, September 12, 2016

Teach a Man to Fish

I don't know what it is about Weston.

While it is true that he may suffer more than most, and this year has been no exception; he has also been blessed with the positive power of the Universe.

The Tarot Cards describes this kind of person as the Magician.

Perhaps you know some of these folks?
They are the lucky souls who always seem to land on their feet.
Hard times may come their way,
but these individuals survive in spectacular fashion,
always coming out ahead,
finding themselves exactly where they are meant-to-be.

See the figure eight symbol over his head?
This is a the symbol of Infinity,
as is the snake belt biting its own tale,
 The Magician is innately in-tune with Infinity
and the continuous flow of the Universe.

With one hand he points upward
representing his strong connection to spirt,
with the other, he points downward
transferring that very special energy toward earth
instinctively accessing his spirit soul
that guides his earthly movements
naturally and in-sync with the world

He is an irresistible, charming and carefree spirit
who without much effort
will always find his way.

Weston is indeed the Magician

This Labor Day Weekend, we visited American Legion Park, a large grassy and wooded area consisting of tennis courts, ball fields, a play ground and pond/dock area.

Nick, Weston and I decide to explore the dock area.
As we sit on the platform and dangle our feet in the warm water. Nicholas shouts with glee,

"Look Mom, there's a stick with some string in the water."

He reaches into the shallow water and pulls out a small make-shift fishing rod.

"You're right Nick it does look like someone was trying to fish." I say. "But there is no hook on the end of the line. Someone must have lost it."

I feel discouraged.

"Don't worry Mom, I'll find a hook," Weston says assuredly.

"I'm going to catch a fish."

"I don't know Weston, it's a pretty big pond," I say, certain we were not going to find a hook.

Within seconds, Weston pulls on a fishing line attached to a buoy by the dock.

"Look Mom," he says with enthusiasm. "A hook....!"

Seconds later he shouts, "Mom, look over there...a bobber."

Yes, Weston's fine-tuned, overly sensitive senses serve as a type of teen radar for sure enough, there at the edge of the pond is a red and white bobber in perfect floating condition.

Weston runs to retrieve it and returns to the dock eager to construct a make-shift fishing line.

Just then, a stern man and his son arrive at the dock.

The man clomps heavily down the dock carrying three high-end fishing rods tucked carefully under his arm. Made from hard-molded rubber and bright stainless steel, these sparkling beauties look like they belong on a surgeon's table as they glimmer with a sterilized precision by the light of the afternoon sunshine, broadcasting with a no-nonsense kind of certainty... this man is serious about fishing.

He storms determinedly toward Weston who is seated on the dock in his modest manufacture mode.

"Let me know if you need me to move," Weston says politely.

The hard-core fisherman exhales with an obnoxious "uh-huh" then steps defiantly over him as if he is a small insignificant stone blocking his important path.  The fisherman assumes his position at the end of the dock and begins his well-rehearsed process of setting his gear. He opens his magnificent, multi-layered fishing chest and pulls out a collection of slick gummy worms and sparkling spinner baits while his young teenage son wanders helplessly and bewilderedly around and around the dock.

The moody man attaches several of these new-fangled devices to his resplendent rod and stands steadfast and determined at the edge of the dock anxious to begin his well-rehearsed ritual.

"WHIRL, sings his line as it flies expertly out over the water.

""CLICK, snaps the reel" as he sets the line.

"REEEEEEEEEEEEERT as the line wraps back onto the reel.

The man is a fishing machine.

A continuous cacophony of


On his face, a smirk of smug satisfaction.

Broadcasting to the world.....THIS is how you catch a fish.

But the carefree Weston is un-phased by the man's obnoxious display of fishing bravado.

For despite all the whirling and clicking and reeeeerting,

not a single fish responds.




Weston is completely oblivious to this swagger and show, focusing instead on the project in front of him, happily assured of his ability to catch a fish by reinventing the reel.

He asks me and Nick to collect some muscles for him, so he may use them as bait.

"Weston," I say, "muscles are located in sea water, not pond water,"

"They're here too Mom," he says confidently and puts down his rod to show us where they hide.

He steps gingerly in the water surveying the weedy edges of the pond and digs down deep into the mud pulling out, what is indeed a collection of creepy crustaceans.

"Well what do you know," I say, "you learn something new every day."

A small group of children playing on the beach watch us as we search the water and shout:

"I found one."

They are enticed by our shouts and unique form of treasure collecting. It isn't long before Weston has a gaggle of bait-gathering groupies

We head back to the dock where Weston uses a small stone to break open the muscles. As he baits the hook we hear the pitter-patter of tiny footsteps, as several children drop muscles at Weston's feet.

"Dit, dit dit dit dit dit," as a small boy runs toward Weston.

"Plunk," as he drops the large mollusk onto the dock.

"Thanks, little dude," Weston says.

And pretty soon we hear a steady stream of

dit dit dit....plunk.

dit dit dit.... plunk

dit dit dit...plunk

The steady stream of smiling suitors begin to build an enormous mound of mollusks, annoying the fishing fanatic who is surprised by his own son's allegiance to this team of tiny treasure-troopers.

At long last, Wes is ready to fish.

Surrounded by his herd of Pied Piperettes, he stands up on the dock.

He holds the tiny stick that consists of a short length of fishing line, a bobber, a tiny hook, and a small piece of muscle flesh dangling off the end.

He lowers the rig-a-ma-jig slowly toward the water directly beside his feet.

No casting, no throwing, no whirling, clicking or reeeerting.

As the tiny hook begins to approach the dark depths of the weedy pond water...


Like a stallion jumping a fence, a large fish springs boldly from the water and swallows the hook in a firey, frenzy of splash slapping spray.

The fish nearly swallows the rod.

Weston pulls the heavy and wriggling fish onto the dock amidst a chorus of cheering children.

He did it.

He catches the fish with his magical charm and exuberant willfulness

Tah dah......!

And much like the Magician who announces "nothing up my sleeve" and raises a bewildered rabbit from his magic hat,


Weston raises a bewildered fish from his magic pond.

It is a spectacular display of care-free confidence and kind-hearted cooperation filled with laughter and reward.

As for the expert fisherman on the dock?

He refuses to glance over to congratulate Weston.

Choosing instead to persevere alone in a monotonous and fruitless routine of

Whirl, click, rert.

Of course, the kind-hearted Weston, returns his cold-blooded capture back into Infinity.

And the comfort of his watery world.

I am a little wary of my son's special gift
since he told me one day at the supermarket:

"You see the girl on this magazine Mom?"

"Someday I am going to marry her!"

Saturday, August 27, 2016

A Right to be in the World

Pretty powerful words, huh?

They are not mine.
They belong to Rosemarie Garland Thomson.
They are just a sample of her words from an article entitled; "Becoming Disabled"

This is a link that will take you to the OP Ed piece that appeared in the New York Times on Sunday Aug 21, 2016


As a writer, I believe that words are powerful things. I believe that used wisely they have the ability to dispel ignorance and move the world forward, toward enlightenment and acceptance.

This type of writing however, is difficult to find.
But when you do stumble upon it, you know it.
There is a strong desire to share it with others.
It is, in a way, almost magical in its power to transform...

Below is an excerpt of exactly what I mean....

The article:
Becoming Disabled
By Rosemarie Garland Thomson
New York Times Op Ed Sunday 8/21/2016


".......A person without a disability may recognize someone using a wheelchair, a guide dog or a prosthetic limb, or someone with Down syndrome, but most don’t conceptualize these people as having a shared social identity and a political status. “They” merely seem to be people to whom something unfortunate has happened, for whom something has gone terribly wrong. The one thing most people do know about being disabled is that they don’t want to be that."

"Yet disability is everywhere once you start noticing it. A simple awareness of who we are sharing our public spaces with can be revelatory. Wheelchair users or people with walkers, hearing aids, canes, service animals, prosthetic limbs or breathing devices may seem to appear out of nowhere, when they were in fact there all the time......."

"As we manage our bodies in environments not built for them, the social barriers can sometimes be more awkward than the physical ones. Confused responses to racial or gender categories can provoke the question “What are you?” Whereas disability interrogations are “What’s wrong with you?” Before I learned about disability rights and disability pride, which I came to by way of the women’s movement, I always squirmed out a shame-filled, “I was born this way.” Now I’m likely to begin one of these uncomfortable encounters with, “I have a disability,” and to complete it with, “And these are the accommodations I need.” This is a claim to inclusion and right to access resources.

This coming out has made possible what a young graduate student with a disability said to me after I gave a lecture at her university. She said that she understood now that she had a right to be in the world."

Friday, August 26, 2016


",,,And if we allow a demagogue filled with arrogance and narcissism with no foundation of integrity, intelligence, ethics, compassion, understanding, or global concern to convince us that building walls, screaming hate, ostracizing "others", aggrandizing white superiority and circling wagons of myopia and nativism - all while exemplifying disrespect, incivility, verbal ugliness and plain old sophomorically bad manners - is a good idea for America - we have truly lost our way"

Lorraine Devon Wilke
"Normalizing Hate and Fear"

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."

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


Friday, August 19, 2016


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:


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