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.




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 felt trapped and helpless.


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.

I have noticed many times in my life that working harder to get what I want does not always secure the best results. In fact, when things seem difficult and it feels like no matter how hard I try there is no forward movement, only resistance. This is a signal to stop. I must surrender to the Universe and accept my fate. I need to recognize 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 has been opened wide and there is a rush of very positive forward momentum.

This however, requires a great deal of trust, 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.
 
 

Sunday, June 7, 2015

I'm A Dancin', Dancin' Machine

Our objective for Nicholas this school year has been to build independence and prepare him for middle school. An important end-of-the-year event to help develop self confidence and achieve autonomy for the children is the 6th grade dance.

For most of the kids, including Nicholas, this is their first real dance experience and an opportunity for them to express themselves without interference from parents or teachers.


The handsome Nicholas rose to the occasion wearing a new polo shirt and Daddy's favorite cologne.

But attending the dance was a little tricky for Nicholas since his bedtime is typically very early and the dance wasn't scheduled to begin until 7 pm.

Once again we relied on others to help us through.

There was Ms Emily, his teacher who helped Nick practice for the big event.

There was his best-buddy Alex, whose free-spirit and Weston-like energy helped him to willingly try this challenging new experience.

To prevent anxiety and sensory overload, he relied heavily on his faithful headphones and favorite stuffed animal, Spikey.

With all of these supports, I am happy to report that the dance was a smashing success.

He sang, he danced and he even managed to build up the courage to ask his favorite friend, Veronica to dance. She gladly accepted his invitation.

As for me, I hid in the conference room, where the good principal, Mr. G kept me company until Nick was ready to head home, about an hour later.

Please enjoy the very loud video below of the two dance maniacs. Notice if you will, how much fun Alex is having and the beautiful girls dancing with Nicholas.

video
 Video courtesy of the wonderful Ms. Emily

Monday, June 1, 2015

Who Wears the Pants?

It's official.

I am now the shortest member of the family.

In fact, the boys get a kick out of calling me the runt.

Thanks to the growth hormone and testosterone injections, Nicholas has finally had a growth spurt and is now 5'4" tall. Weston on the other hand has doubled up in inches and added some significant height in a very short amount of time. He is now 5'11" and gaining quickly on Dad.

The thing I loved most about my children being shorter was the ability for me to fit into their clothing. For years, t-shirts, sweat shirts and jeans were shared equally among the three of us. We shared a community wardrobe. Clothing was "one size fits all" so to speak.

So you can imagine my disappointment when Weston announced:

"Mom, I need new clothes! None of this stuff fits me any more."

"Yeah," Nicholas agreed, "Me either."

Reluctantly, I agreed. They were right. It was time for a little man shopping. So Pete, Weston and Nick decided to head over to the clothes store to stock up some new duds.

They came home with bags and bags full of very large men's clothing

"Look Mom," Weston said as he pulled out a pair of man-sized jeans. "I am wearing the same size as Daddy now."

"Yes, I guess I need to face the fact that you and Nicholas are both men now," I said disappointingly.

"Yeah," Pete added, "But you wanna know the greatest thing about all of this?"

"What?" I asked.

 "If I run out of clothing now I can just borrow Weston's!"

Saturday, May 30, 2015

The Goat Herder


Weston has his first job.
He is a goat herder,
 and will be responsible for the care and feeding
 of a small herd (or is it flock?) of goats.

This little guy was born yesterday
 
Andrea is Nick's school bus driver. She lives in the town next door. She has a small farm complete with goats, chickens, and several dogs. She is getting older and needs help maintaining the property. Last week, she asked me if Weston would like to help her out. She explained that she would gladly pay for his assistance.
 
As you may recall, Weston is a nature boy. He enjoys animals and being outdoors, so it seems like a perfect fit. Andrea receives the assistance of a healthy young man to help her attend to the many farm chores. Weston receives an opportunity to work outdoors tending animals and fixing things like pens, gates and fences, not to mention an accompanying paycheck.
 
I am hopeful that Weston will be up to the task. His first chore will be to "muck out" the pen. It is hard, physical labor and something I believe will be good for a boy with an excess of energy.
 
 
FYI, Pete grew up in the midwest. His first job? Working on a dairy farm, of course.
 
I am hopeful this is going to work....will keep you posted.
 

Tuesday, May 26, 2015

Checkmate

If you are the parent of a child diagnosed with special needs,

the quality of education your child receives in the public school environment

is directly proportional to how good you are at playing chess.


It's about strategy.

It's about playing aggressively.

It's about understanding the unique movement of each of the pieces,

And how they work together.

But before you play, you better acknowledge the indisputable fact

that you are indeed playing a game.

And the more adept you are at maneuvering, the more support and services your child will receive.

In chess, the key to winning is first to assess the competence of your opponent.

In this case, it is a fierce one, a ruthless master, skilled in the art of merciless annihilation and all-out guerrilla warfare.

In fact, it is a lot like playing chess with Bobby Fischer.


The name of the game is intimidation,

achieved easily through misdirection and manipulation.

It is very unlikely that you are going to beat one of the greatest chess players who ever lived.

In fact, let's face it, it's going to be a blood bath.

And the blood that's spilled is going to be yours.....and lots of it.

Along with your sweat, your sleep, your tears and all of your money.

You can hire someone to play chess for you.

But there is no guarantee that they are going to win.

In fact, it will probably do nothing more than cost you more sweat, sleep, tears and money.

It is a never-ending battle to see just how much money the school is willing to pay for the "free" and appropriate education of your child. And the more disabled your child is, the less likely the school will be to accommodate them, since special needs supports and services are often accompanied by some pretty hefty price tags.

It is a fight for tax dollars and federal funds.

The prevailing dogma being that school funds can be used more efficiently in meeting the greater needs of the "healthy many" rather than the costly needs of the "disabled few"


Better to spend money building things like football fields and administrative offices than to accommodate out-of-district placements for medically complex children. Who, more often than not, will be shoved into some windowless closet of a classroom with little supervision and severe behaviorally-challenged children increasing the probability of verbal, physical or in the severest cases, even sexual abuse.

The law unfortunately supports this madness as the child must fail in the public school environment first before a new placement is considered

As parents of children diagnosed with special needs we hold our breaths,

and pray we play the game well enough to keep our children safe.

 
There are other things we pray our children achieve,
like making academic progress and building social success.
But those victories can be even more 
illusive, feeling a lot like winning the lottery.
It happens, but to a rare few.
 
 
For the last three years we have been one of these fortunate families. Nicholas won the special needs lottery and experienced tremendous social and academic success. He was fully and whole-heartedly embraced by his entire school community. He matured into a happy, well-adjusted student, a child like any other.
 
Today however, we do not have agreement with the school district about where Nicholas will be educated next year. He is transitioning out of the elementary school and will begin his journey into a new middle school program.
 
The question is....................where?
 
The Chess Players, Friedrich Moritz August Retzsch
 
  Once again I am forced to play chess with a formidable opponent
and pray that my game is good enough.
 
 

Monday, May 11, 2015

Where there's Smoke?

Mother's Day weekend was a festive time for the Peters family.

Saturday, we celebrated with a combination Pete's birthday party and Courtney's baby shower for the soon-to-be birth of our first nephew. It was a boisterous celebration for the entire family, with aunts, uncles cousins and friends.

I was happy to see that within the party atmosphere, my children found a way to entertain themselves.

True to his energized spirit, Weston spent much of the day circling the house on a very cool 4-wheeler with monster knobby tires that ripped up most of my brother's newly seeded lawn.

vvvrooom, vvvroooom, vvvroom......!

He roared around the home like a racer at the Indy 500, circling the house with a constant rhythmic sound.

vrrrrooom. vvvrrroooom, vvvrrrroooom........!

Around Weston went until eventually, the vrooming stopped and he gathered enough courage to enter the forest and cross the muddy swamp. Yes, Weston was in his glory and happy to be moving.

Nicholas, on the other hand, was true to his laid-back spirit and preferred to stay put, motivated strongly however, by an opportunity to operate this....


Using this irresistible device.


 Nicholas fulfilled his perseveration fantasy by standing in the garage, pressing the clicker and watching the door go up and down........a thousand times.

RrrrrrrrRrrrrrrrRrrrrrr, went the door as it traveled overhead up and out of sight.

A slight pause, and then,

RrrrrrrRrrrrrrRrrrrrrrr as the door rumbled back down its tracks slowly toward the ground.

Yes, between the Rrrrrrring and the Vrooooming, the boys stayed busy all day.

That is until Nicholas came running inside the house.


"The, the, the, the..........door!" he said pointing toward the closed door that leads into the garage.

"The garage door?" we asked smiling.

"Yes!" he answered amazed that we were all still seated.

"What's the matter with it? we asked, certain that he had just worn out the battery on the clicker.

"There's there's there's.....a a a pppp.....problem," he said jumping up and down.

None of us was concerned as we smiled and placated the motioning boy who was now waving his arms wildly.

"What is it?" we asked, laughing slightly at his urgent antics.

"There, there there's........sssssssssss.................ssssssmmmmm.....smoke!" he bellowed.

"SMOKE?" we all shouted in unison and jumped from our chairs!

We ran to the door leading to the garage and yanked it open, only to see thick white smoke puffing profusely from the exhausted garage door opener.

Yes, dear friends, my son Nicholas had opened the garage door so often in such a short amount of time that the thing actually started to smoke.


Filling the garage with a white noxious haze.

We gagged and waved our arms, not knowing whether the tears in our eyes were from our laughter and disbelief or from the sharp sting of toxic fumes emanating from the malfunctioning motor. 

Needless to say, the clicker was immediately retired for the rest of the day.

And Nick's addiction..................well let's just say it has been "put out" for a while.

He decided on the spot that perhaps Weston's vrrrooooming around the house was a much safer sport.

vvvrrrooooooom

Thursday, May 7, 2015

Zombie Patrol

This week was another insane one. Weston and I assumed our usual positions in our vehicle, driving, driving, driving and visiting with specialists.

 
This time we visited with one of our favorites physicians, Dr. George. You may remember he is Weston's pediatrician and our family friend. Typically we talk with Dr. George about managing Weston's health. Today, however, we did a little venting. OK a lot of venting. I explained how lately we are becoming appointmentaholics, visiting too many physicians and forgetting to slow down and smell the roses.


Dr. George listened calmly and validated our complaint, explaining that life is not about snoozing and sailing on beautiful, bright, sunny seas. If it is, he explained, then you are probably doing something wrong, and could use a good healthy dose of reality medicine.

He told us that he teaches a unique weight loss program and often explains to his patients that life is a lot like fighting with zombies.


Zombies are the "stuff" life throws at you, the snarling, staggering, dopey creatures that scare the shit out of you, at least until you figure out how easy it is to kill them.

The trick he says, is choosing your preferred weapon, standing your ground and silencing the madness, keeping in mind that zombies are attracted to chaos. By silencing the noise in your life, you can potentially minimize the frequency of zombie attacks.

I laughed out loud picturing the chaos of our life coming to life and wandering toward us as a steady stream of unintelligent un-deads...........!

All we need to remember, is to give these comical creatures a good whack on the head.


Pretty easy when you think about it this way huh?
And my preferred weaponry?

 
Did you really need to ask?