Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 13, diagnosed with Prader-Willi Syndrome and Weston 16, 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, November 15, 2015

One World


I would like to dedicate this post to the citizens of France.

Today, I am not an American.

I am a human being.

I am bonded to the people of France NOT by nationality but by brotherhood.

I share with you in the belief

that world peace is possible.

That one day citizens of this world will posses a respect for all humanity, regardless of one's sex, race, religion, nation, personal or political views.

Today's events in Paris remind us that we live in a world that promotes violence.

Where killing is encouraged as a means to end political, civil and religious difference.

It is a cancerous mass mindset that has lead to the intolerable continuation of civilian slaughter.

I feel a loss for the number of precious lives taken so mercilessly, an abominable side-effect of what happens when those among us hate,

when we use violence as a means to end an opposing ideology.

when national, civil or religious pride teaches us to emphasize our difference instead of our similarity.

If we are to end the vicious cycle of hatred, then no matter where in the world these atrocities occur, we must meet violence consistently with solidarity and peace, with our own personal acts of selflessness and compassion.

We must unite, not as countrymen, but as fellow human beings.

We must promote peace, not retaliation.

“Let no one be discouraged by the belief there is nothing one person can do against the enormous array of the world’s ills, misery, ignorance and violence. Few will have the greatness to bend history, but each of us can work to change a small portion of events. And in the total of all those acts will be written the history of a generation.” - Robert F. Kennedy

In 1968, Robert Kennedy gave a speech shortly after the brutal slaying of Martin Luther King, entitled "On the Mindless Menace of Violence"

It is interesting to me, how after almost 50 years, his words resonate on an international scale.

I have highlighted a few of his paragraphs and changed a few of his words (in quotations) to reflect the relevance to today's events.

"When ever a "human" life is taken by another "human" unnecessarily – whether it is done in the name of the law or in the defiance of the law, by one man or a gang, in cold blood or in passion, in an attack of violence of in response to violence – whenever we tear at the fabric of life which another man has painfully and clumsily woven for himself and his children, the whole "world" is degraded

The question is whether we can find in our midst and in our own hearts that leadership of humane purpose that will recognize the terrible truths of our existence

Our lives on this planet are too short and the work to be done too great to let this spirit flourish any longer in our land. Of course we can not vanquish it with a program, nor with a resolution.

But we can perhaps remember, if only for a time, that those who live with us are our brothers, that they share with us the same short moment of life; that they seek as we do, nothing but the chance to live out their lives in purpose and in happiness, winning what satisfaction and fulfillment they can.

Surely this bond of common faith, this bond of common goal, can begin to teach us something. Surely we can learn at least to look at those around us as fellow citizens, and surely we can begin to work a little harder to bind us the wounds among us and to become in our own hearts "fellow citizens" once again.”


Thursday, November 5, 2015

Losing Heart

As a society, we value intelligence.

We are brain heavy.

Folks with big brains are elevated in status and honored throughout history.

This intellectual power has transitioned us, as humans, out of ignorance and into civility.

Great  minds have hurled us into a new technological world filled with wondrous devices like automobiles, cell phones, the Internet, and HDTV.

Devices designed to connect us as human beings,

While all of this brain work is performed in the name of progress with a desire to keep us connected,

I wonder just how connected we are?

We tweet but do we talk?

We post but do we listen?

We "like" but do we know how to love?

I wonder if in our pursuit of greatness, have we lost our hearts?

Has our desire to become smarter inhibited our ability to become deeper?

Throwing us off balance,

creating an emotional vacuum

abhorred by nature

Are we forgetting the simple things?

Why is intelligence considered a strength,

while compassion is viewed as a weakness?

My son Nicholas is not an intellectual mastermind.

In fact, he is cognitively delayed,

mentally inferior

he has been labeled "a retard"

a human being who is somehow less.

A victim of our society's obsession with the mind.

Think about the words we use to describe those lacking in superior brain power.

feeble, incapacitated, dim

suggesting a weakness, a brokenness, an absence of light.

But I am Nick's mother.

And although I may not have a superior IQ,

what I see in my son is something more

not less

Perhaps you believe I am deluding myself

in an effort to "super humanize" my inferior child?

And maybe that is true.

But maybe, just maybe, as a long time observer of my child,

I see something you do not.

I see a boy who engages always with his heart,

not his head.

His life is heart-full.

His spirit bright and strong.

He sees the beauty in simple things.

and loves from his soul.

He enjoys the now

and is able....simply "to be"

Finding an inner peace and ability to love unconditionally.

Bringing out the very best in others.

And although he is defined by some as "simple"

I believe his purpose here on earth is complex

With his silence, he educates,

Defining a shining and seemingly forgotten truth that:

When we see with our brain.....we judge.

When we see with our heart.......we accept.

Tuesday, November 3, 2015

Carry that Weight

Last night, I forgot to lock the refrigerator.

To you, that might not sound like a big deal.

But to a parent of a child diagnosed with Prader Willi Syndrome,

that little slip could have a deadly consequence.

That is the weight I carry.

It is a weight all of us in this family share.

Every evening, we must remember to lock the pantry and secure the fridge.

At one time or another, all of us have forgotten.

And every time we do, we put Nick's life in danger.

But who among us is infallible?

We are all human....aren't we?

We wonder then,

Is it just a question of time?

We live with this fear, burying it every day under a brave fa├žade,

 but it is always there.

Sunday, November 1, 2015

The Great Pumpkin Fire

It's fall in New England.

fyi, I used to work here when I was a girl
 Nick's favorite time of year.

The colorful leaves and cold temperatures have alerted my humble, holiday-enthusiast to the undeniable arrival of the "Magic Season".

A time for apple picking and cold cider.

A time for warm sweaters and spooky decoration.

A time for carving pumpkins.

And lots of them.

But the fall activity he enjoys most is this!

There is nothing in this world more alluring to Nicholas than sitting in front of a rip-roaring fire.

But fall is also the time for Halloween and believe it or not, for individuals diagnosed with PWS, this can be a dangerous event.

Think about it.

For a child who is hard-wired to eat, what could be more difficult to negotiate safely than traveling door to door visiting neighbors whose sole purpose is to provide you with an unlimited amount of candy......lots and lots of sugary sweets?

It is a torturous experience for someone who can not control their hunger.

It is interesting to me how much of our culture revolves around food????

Anyway, when Nicholas was a baby, I sweated this out, wondering how on earth I would negotiate such a calorie-infused holiday while simultaneously providing some normalcy to my much-deserved son.

I am happy to report, that so far, for Nicholas, it hasn't been a problem.

Let me explain.

Children diagnosed with PWS often experience difficulty with their sleep schedules. Nicholas is no different. By 7 pm he's ready for bed. His body moves slowly, his legs are wobbly.  So, on Halloween night he has great difficulty negotiating the uneven terrain in the dark. Since 6-8 pm is the scheduled hours for trick-or-treating, Nick's endurance for door-to-door candy collecting is greatly reduced.

Yes, unlike the other children who dash wildly from house to house, the sensory sensitive Nicholas, prefers instead to wander slowly, stopping often to chat kindly with home owners. He asks them if they have garages and clickers or gas-powered fireplaces.

Yesterday was a chilly one here in New England. And although it was a starlit and crystal clear evening, candy coveters were clothed in cardigans and coats. Once again Nicholas was tired and struggling to keep up as we traveled quickly from house-to-house. He lingered at doorways searching, as usual, for talk-able topics.

That is until we arrived at one house in particular.
The white house on the corner.

There was a warm, inviting glow emanating from within. Brightly lit decorations waved from the leave-scattered lawn. The front door was open. On the threshold, a kind, friendly woman smiled warmly as she held out a bountiful bowl of colorful candy. As Nick reached toward the tantalizing treats, he stopped suddenly,

distracted by the distinct sound of a very large POP!

"Mummy, look!"  he shouted, and without taking any candy, ran toward the glorious glow of a very large fire.

Well, that was it for our weary-weener, he found the perfect spot, and much like the Charlie Brown character Linus, who was happy to stay behind in a pumpkin patch on Halloween eve, Nicholas too, hunkered down happy and alone, eager to enjoy the quiet of the most sincerest kind of solitude.

He did not lust for more candy but instead lingered in front of the roaring flames enjoying the sight, smell and sound of a hot, crackling fire.

He found his Great Pumpkin.

Redefining the meaning of the word, Halloween.

Reminding me once again, that he is not here to keep up with the activities of mindless others.

He follows his heart.

He stops to enjoy the simple things in life,

Knowing instinctively just how "to be"

Happy Halloween

Sunday, October 18, 2015

The Grease Monkey

OK, so enough about me and my complaining.
 I can only take so much of my "woe is me" mentality,
and then it's time to move on.
We have a lot to catch up on.

If you are a long time reader of our blog, 
perhaps you recall my son Weston's fascination with motorized vehicles.
In fact, when he was a small child,
we would forgo trips to the playground in favor of places like this.

He enjoys the sights, sounds and smell
of mud slinging tires
 and gas chugging engines

He loves vehicles so much,
that one Christmas,
Jolly Old Saint Nicholas brought him this
 miniature monster machine

and aided the dwarfed driver
 into becoming a master maneuverer,
capable of operating the battery-powered Jeepster
with the same finesse as a professional race car driver
Yup Richard Petty had nothing on him
He happily offered joy rides to his little brother and neighborhood friends
 negotiating hair pin turns or screeching halts
with amazing speed and agility
Yes, I guess it is safe to say that Weston knows a thing or two about vehicles.

Even now, the allure of anything shiny and metal and motorized is tough to resist
I have found more than a few of these vrooming vehicles
in the pants pocket of his favorite jeans
 or under the back seat of our family car.
But over the years, his tastes have changed.
Those faithful sturdy yellow construction contraptions
have been left well-behind
in favor of a more fast-moving kind of flashiness. 

 He is now an expert in the identification of
fabulous foreign cars whose names end with the letter "i"
You can read more about his new obsession here.
Where is all this leading you ask?
Well dear readers, I am happy to report that the time has come
 for Weston to begin transitioning into the real world.
You may recall I had Nick's pit bull
(his advocate/attorney)
working on finding an appropriate technical school for Weston.
One that would recognize his disability
and provide the appropriate supports for him.
We were able to find one last year in the neighboring town
 but much like our progress with Nicholas,
our ferocious pit bull turned into a pussycat
and was unsuccessful at negotiating this transition.
Seems the only one she had any luck bullying after all,
was me.
So, I fired her.
And negotiated (on my own)
several new school programs for Weston.
The first was transportation to and from school with Nicholas.
Thus freeing me up to handle my increased responsibilities caring for Mom.
Both boys are happy to be sharing the ride.
The second program was designing a work/study arrangement for Weston.
Where the first half of his day would be devoted to school work,
the next half working with a job coach
 to secure employment opportunities for him in town.
What is his first job you ask?
Perhaps not surprisingly, he has become a grease monkey.
He will be working at the local garage changing oil and transmission fluids.
Pretty cool, right?
This weekend we bought him the prerequisite blue Dickies and some steel-toed boots.
For a young adult diagnosed with ADHD,
 job success is directly proportional to personal enjoyment.
In other words, like his father,
Weston needs to love what he is doing.
If not,
you can forget about his ability to focus,
pay attention and successfully complete his tasks.
The job coach at the school worked with Weston
to identify his passions
and design a resume, 
geared toward companies where he would enjoy working
Together they set up interviews.
and found this new opportunity.
We are hoping this experience
will help him to relate to others in a professional setting
and to find fulfillment
in the idea of working at what you love for a living.
I am very proud of Weston
and will keep y'all posted on his progress.

Sunday, October 4, 2015

Like a Seagull in a Storm

I believe when you ask spirit for an answer...you get one.

Only problem is, the answer comes in symbols, not in words

and that can make things difficult.

I think there is a reason for this.

I think if we had a telephone line connected directly to God and asked him on occasion, OK what the heck is this all about? What is my lesson? And how on earth I am supposed to handle this un-survivable hardship?

How much do you think we would listen?

Or perhaps more importantly, how much do you think we would learn?

Like a good parent would do for their child, I believe spirit asks us to find our own answers.

And when we do...they are a whole lot more meaningful.

But also like a good parent, I believe that spirit provides us with guidance, in the form of symbolic hints.

The only way to receive these important hints is to listen.

Not with your ears but with all of your senses, with your inner spirit, so to speak....your soul. To do this, you must be present, living in the moment, observing and interacting kindly with all that is around you.

I believe that Mother Nature holds many of these answers.

I believe animals/fish/birds/insects are naturally more in sync with spirit. Their ability to connect is instinctual, probably because they don't tend to over think. Sometimes it is our brains that do us the most harm.

I am going to share my story with the hope that it will help others who may be suffering.

As many of you know, three years ago Nicholas was transferred to a new school. My responsibility was to drive him back and forth to school every day. In an effort to calm my anxiousness about this new adventure, I envisioned a guardian angel sitting protectively on the roof of our vehicle, guiding and protecting us on our travels to school each day.

I believe this vision may have indeed saved our lives during an extremely close call involving an unsecured ladder on the vehicle in front of us.......but that is a story for another day.

Anyway.....the vision of the angel looked something like this....a strong masculine energy in a protective posture sitting on our rooftop, spreading his large white wings ensuring that no one was going to mess with us. I felt comforted by this vision.

So lately, I find myself in an entirely new and difficult life situation.

Once again, I am struggling and afraid, unsure of my ability to push forward through hardship in a positive and healthful manner, questioning my strength and ability to persevere. I have begun to feel like a victim of my life.

The reason for my struggle is a newly added responsibility. I have recently assumed the helm of caring for my mother. She has been battling the effects of dementia for many years. Her health, home and finances are in a state of crisis.

With all that I have on my plate, I questioned my ability to handle this new responsibility. I believe however, that if I do not accept this life-changing challenge, my mother will die.

I became so overwhelmed by this thought that I believe I experienced my first panic attack, suffering symptoms that felt alarmingly similar to those of a heart attack.

I questioned God asking "why" once again.

I begged him for strength (this time on my knees) asking what do I need to learn?

This week, I believe I got my answer.

Nicholas and I had an appointment at Children's Hospital. (Just for the record, I believe this is a very holy place)

Anyway, we finished up our appointment with one of our favorite providers (a true healer). As we left the building and approached our vehicle, this is what we saw.

A seagull, perched protectively on the roof of our vehicle, in the same stance as my vision of the guardian angel.

I do not believe in coincidence.

I do believe that we experience the things we are meant to experience, exactly when we are meant to experience them. That there are helpful life lessons buried deep inside these important moments.

I knew immediately that this "symbol" was an important one.

Someone was trying to tell me something.

The white-winged bird on my roof, is without a doubt, validation that spiritual help is indeed present.

That part is pretty easy to figure out....a kind of an "in-your-face" affirmation.

The rest is a little more abstract, but here's what I believe,

When you think about it, one of the best words to describe a seagull is resilient.

They are resilient...not in a "victim" sense of the word, but instead in a playfully invincible kind of a way.

They face great difficulty, easily....because they go with the flow.

They don't fight the laws of nature they ride them.

Perhaps you have seen the way seagulls, play with the wind. They bend their wings and allow the strong current to hold them motionless in flight......playing effortlessly with gale force winds, having fun with their unique design to survive.

But they are also pretty "bad ass" creatures, 
 They are leaders
leaders who do not look like leaders,
They are not decked out in fine clothing,
or sit on a royal throne.
In fact, you may overlook them at first.
But leaders they are,
strong beings who possess a confident inner spirit,
 a self assurance that rivals
 the royalty of a lion or 
the sleekness of a hawk
In fact, nobody messes with them.
 If I had to choose the victor in a fight between a lion
(or another large beast)
 and a seagull,
I would choose the seagull.

They ride the waves

And weather the storm
with a carefree invincible sense
 of comfort and ease
They boldly and unapologetically
do what they know is best,
unabashedly unaffected
by others

Letting go immediately
of the things that are not inherently useful
They have a strong voice
and know how to use it
to subdue uncooperative others
They hang out or flock with those of similar energy
They're silly and goofy
but surprisingly chic
They are resilient
soaring over air, land and sea
They believe
They live for the moment and seize the "now" of the day.
I believe my message from spirit is to playfully ride out the storm.
To stop preparing to fight and instead accept things gracefully.
To relax and enjoy the ride.
To have confidence in myself and my unique ability to survive.
To find the strength of my voice
And not be afraid to use it to subdue selfish others who do not support the greater good. 
To let go
To immediately discard the things that inhibit.
To embrace those with similar energy
To trust that this is exactly where I am supposed to be. 
To have faith that there is always a powerful spiritual presence accompanying me.

Tuesday, September 29, 2015

"Warp Speed, Mr. Sulu!"

For a special needs parent, life moves fast.

over rough terrain.
and at breakneck speed
This is my path.
I accept it.
Soldiering on
 in an effort to survive
Well, hold onto your hats folks,
for we are about to move so fast
 that we may actually achieve.....
And much like Captain Kirk, directing his faithful helmsman
to boldly go where no man has gone before
I too have jumped into a time-traveling tunnel
hurtling forward at a violent pace
toward a frightening new galaxy.
"Warp speed,  Mr. Sulu!"
This is my Mom, Evelyn
She is now facing a frightening voyage of her own
toward her own final frontier.
She is a bright, beautiful and vivacious woman.
who currently resides in the memory support unit of an assisted living facility.
She is battling the debilitating effects of dementia
She is in trouble
suffering from many crisis situations
effecting her health, finances and estate.
I have not shared this experience with you for many years,
for reasons that are very complex and deeply personal.
I have through birth right, however,
recently inherited the responsibility of caring for my Mom and her estate.
Interestingly enough, I find myself uniquely prepared for the job,
being no stranger to conflict resolution and complex medical needs.
I have the solid and faithful support of my brothers and sister.
The question is....
Can I do this without disrupting my own health, happiness and family life?
Can I embrace this overwhelming responsibility with a healthy mind
 by acknowledging the fact
 that I have something important to learn here?
I guess time will tell.