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, 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.

Full-speed-ahead.

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 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

video
 
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.

Sunday, July 5, 2015

Something Wonderful


When life is filled with too much trauma and drama, sometimes, amidst the pain, it can deliver something wonderful.
And suddenly everything is better.

Welcome to the world,
Sweet Baby James

This is my new nephew, James. He is the first child of my brother John and his soulmate Courtney. Little James was born a healthy 9 lbs. 11 oz. He is beautiful and very strong, lifting his head up the moment he was born! He is a calm and shining soul, bringing much happiness and healing energy to our family.
 
His arrival into this world was one of the highlights of my life.
 
I thank John and Courtney for offering me an opportunity to participate in this grand event, to be an unforgettable part of such a sacred experience. Mama Courtney is my hero. She navigated through Sweet Baby James' birth with her usual steadfast bravery and calm competence. She is a natural and loving new mother.
 
A birth in the family has a powerful way of putting things into perspective.
 
For me, my worries about Nicholas and school and the future are gone.
 
Unimportant really, when you think about it.
 
In the grand scheme of life......what does it matter?
 
I am thankful to have such life, love, family and friendship in my life.
 
 

Thursday, July 2, 2015

Surrender

I would love to tell you that I recovered quickly from my IEP crucifixion but unfortunately I did not.
 

It stung, but good.

I wallowed in my helplessness, assuming the role of victim with unusual ease. I experienced a steady decline toward self destruction by beginning to doubt myself and my ability to advocate for my son. My restless thoughts turned toward Nicholas and Alex and their important friendship. What would they do without each other? I felt like I had failed them both. It was as if I was a captive prisoner held against my will in an evil tower of a wicked witch. I was at the mercy of a dark and unstoppable force.


But before the red sand slid out of the hour glass, I received a text from Ms Emily, Nick's teacher and sole supporter at my meeting from hell. She explained that "not being heard" was a terrible thing but that I should never doubt my voice and ability to be a strong advocate for Nicholas.

That small, kind and simple gesture was like a tiny rock breaking the thick glass that held me captive. It was good medicine. Her message stirred something within me. Her words were the cold, hard slap I needed to awaken me from my temporary addiction to worthless self-pity.

I reviewed my options. It was time for a new game plan.


I could fire my advocate and hire a new one, but as I mentioned before, we were at a critical cross road with Weston awaiting a meeting to discuss his placement for next year.

I could refuse Nick's placement, order the pitbull to follow my wishes and head to trial, but that would result in thousands of dollars being placed directly into her pocket with no guarantee that we would win.

I could refuse Nick's placement and head to trial by myself. That however would take much time and preparation on my part, with once again no guarantee that we would win. It would also inhibited my ability to prepare a new school for Nick's arrival.

Or I could accept defeat.

I could begin the process of educating a new school on Nick's uniqueness. Giving us an opportunity once again to promote change. We would have the opportunity to start again, building another unique inclusion model at a new public school whose focus will be to remove from the world, more of the stigma and apathy associated with educating kids diagnosed with special needs.

This sounded right to me.

For the first time in many months, I felt positive and powerful, gone was the victim mentality, replaced now with a fiery desire to do things right.  I figured if a new school was to be our fate, then it would happen in a manner that was best for Nicholas....or I would die trying.

I created a list of demands for the school to consider which included:

Hiring a PWS consultant to educate staff on food access prevention.

Scheduling field trips for Nicholas to visit his previous elementary school friends.

Meeting with the school principal and sped director to discuss the possibility of developing a real and meaningful inclusion program.

Presenting first to staff, then to students, guidelines for helping them relate better to Nicholas.

Participating in a new transition meeting, this one without Nick's advocate.

I am happy to report that my requests were all granted.

I believe I have learned something valuable from this experience.

For me, working harder does not always guarantee the best results. In fact, when things seem difficult and it feels like no matter how hard I try, there is steadfast resistance with no forward movement, I have learned that this is my cue to stop and evaluate whether it is time to surrender to the Universe and accept my fate by acknowledging that the world has other more important plans for me. Once I submit to relinquishing control of my future; it is as if a dam opens wide, a powerful energy is released with an accompanying rush of positive forward momentum.

This however, requires a great deal of trust on my part, an almost blind faith in fate, an unwavering belief that there is a greater force at work, operating in the best interest of myself and others.

The question is......can I surrender to it?

Not exactly my greatest strength, but I am trying.....

Monday, June 29, 2015

Defeat

OK so I have gotten a little ahead of myself...

When last I left you, I was about to begin my battle with the greatest chess player who ever lived.

Remember him?
 
I was about to meet with our public school system to discuss Nick's placement for next year.
 
For reasons I am not allowed to discuss, for the last 3 years, Nick has been enrolled in a neighboring regional public school. Where I am happy to report, he thrived. He matured into a happy, healthy, well-adjusted student. He quickly learned to read and write, and developed meaningful friendships with an entire school community.
 
And so to assist me in battling the Bobby Fischer of IEP meetings, I sought the counsel of Nick's attorney/advocate.
 
Perhaps you remember her?
 
The meeting promised to be a good fight.
 
But let's face it, Bobby Fischer is a champion. I knew it was going to take more than a vicious dog to bring him down. Winning this battle was unlikely, even with the help of a snipping, snarling and surly sidekick.
 
I was prepared to take a beating.
 
What I was NOT prepared for was abandonment and betrayal.
 
By everyone, including my hired gun.
 
During the meeting I was scarcely allowed to speak, as the two attorneys, the two sped administrators and an entire room full of educators and specialists gathered to take me down. It was like an IEP lynch mob, assembled for one purpose and one purpose only, to subdue and silence the noncompliant parent.
 
  
Amidst the maliciousness and madness, there was one brave soldier willing to support me.
 
Ms Emily, Nick's sped teacher and faithful friend.
 
But alone in number, she was quickly overrun and unable to stop my bleeding.
 
I was disheartened and bloodied, tears streamed uncontrollably down my face, but true to my fighting spirit, I refused to surrender and expressed my anger and disappointment again and again. Until finally...
 
I was silenced completely
 
by the bark of my own advocate,
 
who explained rather viciously, that our additional year at Nick's current school was given "in exchange" for a return to his current school district. I argued that there was no formalized agreement and that this "exchange" was dependent upon this team developing a suitable setting for Nick, which included his need for a substantially separate environment and appropriate peers. None of which existed. 
 
But my pleas went unanswered as my advocate surged ahead to finalize Nick's plans for the fall.
 
The meeting ended abruptly.
 
The room was silent as teachers and specialists struggled to grasp what had happened.
  
One by one folks exited the conference room overwhelmed by emotion, some of them crying.
 
I sat stunned and speechless unable to comprehend the brutal beating I had endured.
 
Now alone in the conference room with the "devil's" advocate and sped director, I stood up from my chair, told them I would never, ever give up on Nicholas and abruptly left the conference room, slamming the door behind me.
 
I was in a terrible predicament.
 
I could not fire my backstabbing attorney since she was also in the midst of upcoming discussions to decide the precarious fate of my eldest son, Weston.
 
 
I had no options, I felt alone and defeated, like I had failed my son.
 
 
To be continued....

Sunday, June 28, 2015

And So the Adventure Begins...


I am at the mercy of the Universe
I have faith that I will find
excitement and adventure
in this new experience.
 
After a hard-fought and bloody battle
there was failure and self-doubt
support from a friend
a renewal of strength
and belief in the importance of my voice
There was courage to accept defeat
 bitter sweet goodbyes
and a hurtful silence
as Nick and I let go of our meaningful past.
 
We are guided in a new direction.
 
We find ourselves
on the precipice
of change.
 
 
About to leap
together as always
into the great unknown
 
I feel alive
and refreshed
hesitant yet exhilarated
eager to discover
what the future has in store for us.
 
 
Who will we meet?
How will we change?
What type of love will we discover?
What are the lessons we will learn?
 
I am ready to continue our journey together
 
 
I recall in previous posts
asking the Universe
for something new and exciting
 
 
I believe I got my wish.