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, 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.


Sunday, August 2, 2015

A Glimpse

You all know me by now, I'm a fast-moving kind of a gal.

I go, go, go.

I drive, drive, drive.

I move, move, move.

Always traveling at a steady pace.


Occasionally, however, the Universe will place something in my path to block my forward motion.

I am frozen, unable to move, touched deeply by something profound,

something that moves me,

something outside of myself.

This moment is often caused by the strangest and simplest of things,

the lyrics to a song

or a license plate posted on the car in front of me.

Whatever the message or incident, it has a profound effect on me.

It awakens me from my blindness.

When you think about it, if I am always looking ahead,

then I am oblivious to what's behind me.

I miss the opportunity to value my important progress.

I lack the ability to reflect.

To think about where I have been.

To admire the progress I have made.

So that I may appreciate where I am headed.

Important life lessons reside in these rare and powerful moments.

They are glimpses, I believe, of something we need to acknowledge.

A message we need to hear.

To me, it's like a PowerPoint presentation sent directly from above.

An exclamation point,

and emphasis on something overlooked.

I would like to share one of these rare moments with you.

It is a glimpse that took my breath away.

On Friday, my beautiful niece sent me this.....

It is Nick singing

many years ago,

reminding me on this day,

to just sing, sing a song.

Nicholas Peters
Here Comes the Sun

Sing, sing a song
Sing out loud
Sing out strong
Sing of good things not bad
Sing of happy, not sad
Sing, sing a song
Make it simple to last
Your whole life long
Don't worry that it's not
Good enough for anyone
Else to hear
Just sing, sing a song
Sing, sing a song
Let the whole world sing along
Sing of love there could be
Sing for you and for me
Sing, sing a song
Make it simple to last
Your whole life long
Don't worry that it's not
Good enough for anyone
Else to hear
Just sing, sing a song
-The Carpenters

Wednesday, July 15, 2015

"Holy, Fish Paste..!"

OK, so remember my genius idea for a Christmas present for the boys?

If not, let me refresh your memory.

Perhaps you recall the hypnotic allure SpongeBob SquarePants has on my entire family?

In fact, nightly dinner conversation often revolves around the fine art of reciting favorite "sponge" episodes.

It usually sounds something like this:

Nick: Neyeah Squidward, Neyeah Squidward, Neyeah Squidward.....

Pete:  I'll be there faster than a barefoot jackrabbit on a hot, greasy griddle in the middle of August!

Weston: Meow, Meow, Meow, Meow, Meow, Meow...

Nick:  Keviiiiiin!

Pete: Do you smell it? That smell, a kind of smelly smell? The smelly smell that smells...smelly?

Followed immediately by rounds and rounds of hysterical laughter.

I usually sit there quiet and clueless amidst the laughter, singing and silly sound effect.

So while shopping online last Christmas,

 I found this.

A goldfish tank disguised as an exact replica of Bikini Bottom.

How could I resist?

Genius, right?

I decided if I couldn't beat them, I might as well join them in their underwater obsession.

So I purchased the aquatic microcosm and accompanying fish for minimal money.

With the exception of the costly additives and the series of chemical trials I needed to perform to prevent New Tank Syndrome (a fancy word that means nothing more than cloudy water)

our Bikini Bottom bubbled merrily away on the top of our kitchen counter.

That is until yesterday.

When SpongeBob's happy, little pineapple suddenly transformed into a terrifying tomb for its sole ailing aquatic inhabitant.

Thankfully the boys didn't notice the fateful finish of their flippered friend.

So Pete took the boys out to eat as I disassembled our Bikini Bottom facsimile and performed the usual fish-disposal ritual by sailing our silenced salmon swirling down the sacred sewer stream.

I am happy to report that so far....the boys haven't inquired about the whereabouts of their missing sea creature or my eminent domain of their pineapple property!

But it is surely just a question of time.

Tuesday, July 14, 2015

They Say It's Your Birthday

OK so yep, today is my birthday.

many years ago.....

Pete says it's probably no surprise I was born on Bastille Day, since "independence" is my middle name, and as you know, July 14 is France's 4th of July.

In honor of my special day, he sent me this....enjoy!

Happy Bastille Day

Monday, July 13, 2015

A Quiet Start

Before agreeing to Nick's new placement, I negotiated an important stipulation with the school. I asked and was awarded an opportunity to present a PowerPoint presentation to his new IEP team.

I hoped this “show” would not only educate these folks on the seriousness of Prader Willi Syndrome but also help them to see Nicholas, as the kind-hearted and loving young man he has become...despite his medical complexity.

The "big day" was scheduled for June 15.

I was nervous.

The quality of my presentation would go a long way to either helping or hindering my ability to inspire these folks into action. Could I get this group to see Nick as a child like any other, deserved of their extra attention and effort?

Buy-in from this new team, I believed, would be critical to Nick's ability to be successful in transitioning to this new environment.

I shared my fears about this upcoming presentation with Nick's current teachers.

True to their helpful spirits, they created two documents for me to use. One, was a list of important guidelines I should use in my presentation to help educate a new staff. The other, was a heartfelt letter they addressed to Nick's new teachers. It was a description of everything they had learned in the last few years, tools that aided them in their desire to relate better to Nicholas. It was a helpful guide expressed with their undeniable love and concern for Nick's welfare.

It was exactly what I needed.

Finally, the day of my fateful presentation arrived.

I was lead into a small conference room where about 12 individuals were seated. There were teachers, nurses, therapists, coordinators, secretaries and even the big and burly, Dean of Students. Noticeably absent however, was the Principal and the Director of Special Needs, folks, I believed were critical to inspiring their staff into action.

Despite their absence, I proceeded with my presentation.

It flowed smoothly. I spoke from my heart. I felt calm and confident; anxious to inspire this new group of educators.

They were quiet and attentive. They asked several thoughtful questions. They seemed riveted as their faces rarely left the PowerPoint screen.

But as I wrapped up my presentation with the final slide, there was complete silence and what appeared to be an overwhelming sadness.

They sat frozen in their seats, unable or unwilling to move.

I told them it was not my intention to make them sad; but instead, I was hoping to inspire them. I gave them a copy of the letter from Nick's current teachers.

Still, they seemed unable to speak.

I believe I may have overwhelmed them.

As a long-time caregiver, I am accustomed to the severity of Nick's food-seeking syndrome and the potential it has for causing some dire or even deadly consequences.

I had forgotten what it is like to be introduced to this concept......for the first time.

I do not know if I was successful at motivating this new team.

Or if perhaps, I frightened them instead?

Dealing with the complexity of Nick's diagnosis is a scary and overwhelming responsibility.

It takes a special kind of bravery,

a fearlessness in one's heart,

a steadfast desire to be willing to assist this kind-hearted boy to deal with such a bizarre and debilitating illness.

Does this new group possess this type of strong, united and willing spirit?

I do not know.

I guess, only time will tell.

Sunday, July 12, 2015

A Bitter Sweet Goodbye

After the overwhelming success of Nick's graduation ceremony,
we bid a warm and heartfelt good-bye to his special teachers.

But how do you say goodbye to a group of brave individuals who have made your son's life better, fuller and profoundly more meaningful?

How do you thank them for empowering him to be an important contributor to his class and to an entire school community?

How do you thank them for such a precious gift?

I do not believe it is possible.
Our Guardian Angels

Nurse Sue, the invisible woman
Principal G, Nick's trusted leader
The kind and loving Mr. B
Our shining starlet, Ms. E
Mr. P, our hero and marathon man
The one-in a-million Mr. D
Ms. Emily, our superstar
 for without her patience, support, kindness and friendship
we would be lost
 "Never doubt that a small group of thoughtful committed citizens
can change the world.
For indeed, it is all that ever has."

Thursday, July 9, 2015

The Graduation Machine

Many of you may recall the pain of Nick's graduation ceremony last June.
If not, click on the title below.

No More Secrets

As a family raising a child who suffers from Prader Willi Syndrome, we are accustomed to weathering some extreme behavioral outbursts during the most inopportune moments. We have experienced some noteworthy outbursts from our youngest son during trips to restaurants, grocery stores, camping trips, outdoor activities and special occasions.

We have become very efficient at rolling with these interesting moments, and after many years of surviving the unavoidable embarrassment of these traumatic scenes, we have learned to laugh about them.

We have discovered the key to limiting the number of these episodes is:

Preparation, preparation, and more preparation.

We must prepare for everything.

Every event we participate in,

every trip we take,

every visit to a local restaurant,

we must think about how it will effect Nicholas.

We use a variety of helpful tools and techniques to ensure Nicholas is successful, simple things that can mean the difference between a happy outing or a torturous tirade.

We must ask ourselves questions before each event.

Is it going to be loud?

If so, do we need to bring head phones?

Is the event going to occur during snack or mealtimes?

If so, do we need to bring snacks?

Is it going to be crowded?

If so, do we need to arrive and leave early?

Our life is about instinctively employing these tools so that they may aid Nicholas in negotiating this very noisy and upsetting environment called life.

But this is our fate, and we accept it.

What we did not expect however, was that there would be others in this world who would be willing to do the same for us.

I have spoke often on this blog about Nick's 6th grade teachers. I spoke of their bravery, their compassion and their desire to create a successful inclusion program for Nicholas.

You may recall the brave Mr. P rolling with Nick's graduation outburst and presenting him with his certificate in his classroom, surrounded by many of his beautiful friends.

Perhaps it was the memory of this fateful experience that motivated all of Nick's teachers to achieve an even higher level of special education understanding.

Whatever it was that inspired them, this year they became soldiers.

Folks like us who were ready for anything.

They decided that this year's graduation event was going to be a good one....or they would die trying.

They met independently as a staff and evaluated the entire graduation experience. They asked important questions; like what are Nick's sensory challenges and how should we prepare?

Each team member was assigned an important role in accommodating Nicholas. It was important that they worked together. They provided the prerequisite tools to aid Nick during the ceremony. He would have his headphones, snacks and a seat by the door. Inclusion was once again their top priority, "typical" students were motivated to assist Nick by participating in their carefully crafted script. They developed a system of silent signaling, so that all of them could adjust if things went terribly wrong.

It was indeed a work of art.

Coordinating the entire effort, was of course, the competent, Ms Emily who helped Nick and his best buddy Alex, to practice for this event. She showed them where they would be sitting and what was going to happen. She created hand signals that they could use if they felt overwhelmed.

I am happy to report that when the "big" day arrived, the ceremony ran like a well-oiled machine.

These teachers were like well-rehearsed actors, each of them playing their enthusiastic part with confidence and ease. Their entrances and exits were carefully timed. Pete and I marveled at their precision. They adjusted easily to every situation, carefully monitoring Nick's mood and overall demeanor. They signaled each other when Nick became restless or needed a break. They were ready for anything. It was clear at least to me and Pete that they were well-trained and whole heartedly invested in making this event a special one.

All the world's a stage,
And all the men and women merely players,
They each have their exits and entrances
And one man in his time plays many parts
Their hard word, heartfelt participation and love for Nicholas were exactly the right solution to Nick's graduation success.

He was awarded a special certificate for outstanding participation in music and retrieved his diploma amidst a thunderous applause.

I noticed something interesting, as I looked out over the audience, I was surprised to see that much like last year, there was a single man, unlike the others, who stood out from the crowd.

This time it was an elderly gentleman. But he was not standing in the back of the room like before, instead he was seated directly up front. He was enthusiastic and happy pumping his arms up and down in joyous celebration. It was as if his whole body was smiling brightly. He lead the joyous crowd in a raucous celebration designed for a single purpose....to acknowledge Nicholas and his hard fought graduation accomplishment.

I have no words to describe our joy.

And no thanks that will ever be deep enough to express our pleasure of knowing such special souls.

On Nick's face was an expression of confidence, the kind that comes from challenging one's self and surviving, from sharing and working with others to achieve something great.

During the ceremony, these special teachers had another surprise up their sleeves. They made a special announcement to the audience thanking me for my efforts in educating them on the importance of inclusion. They thanked me for speaking with their students. They thanked me for sharing Nick.

It was a touching and meaningful moment.

One I will never forget.

Although our life raising Nicholas is a difficult one, it is these moments that I cherish, experiences that have an ability to change others; to help them to learn and grow. I am comforted to know that among us here on earth are the special few who have the potential to create a more thoughtful, loving and accepting new world.