Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 15, diagnosed with Prader-Willi Syndrome and Weston 18, 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, disability, 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