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.




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 skill and aptitude 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?

Monday, May 4, 2015

Return of the Beast

OK so remember back in January?

When we were fighting the beast?


In case you are a new reader....

In addition to being diagnosed with Prader Willi Syndrome, Nicholas has also been diagnosed with a very rare form of epilepsy called ESES or Electrical Status Epilepticus of Sleep. In plain English, this means that when he sleeps, there is some electrical discharges that occurs in his brain. When this happens it interrupts his sleep and can at its worst, cause significant regression. Individuals diagnosed with this condition can experience a loss of speech, balance, physical ability, cognition and behavior.

The tough part about this illness is that there is no outward sign of a seizure, it can only be detected by the use of an EEG.

Once a year we head into Boston to perform an overnight sleep study.


In January, Nick and I spent the night in Boston. And although it was a trying time for both of us, we were thrilled to learn that there was no seizure activity.....his EEG was clear.

or so we thought.

Today, we followed up with Dr Takeoka, Nick's Neurologist.

After careful review of Nick's EEG, he discovered it was not clear as the hospital staff originally suggested. He noted  3 or 4 spikes (or discharges) at the rate of one every hour or so. These were noted in the frontal lobe of the brain, the area related to attention and speech.

It appears that Nick's beast is a formidable foe after all.

He has formulated a new tactic, re-emerging from his hiding in the far recesses of Nick's brain.

He is a clever demon, transforming himself into a slow steady rhythm of discharge, rearing his ugly head and refusing to retreat.

But fear not dear readers.

We are a special needs family.

We are no strangers to battle.

or cunning, relentless beasts.

We do not know the meaning of the word surrender.

We will continue to fight.

Tamisen the Paladin SirTiefling.deviantart.com

Saturday, May 2, 2015

Child Whisperers




I am the mother of two child diagnosed with special needs.

But I am not a parent.

Yes, you read that right, I am NOT a parent.

At least not in the ordinary sense of the word.

To me, parenting is about educating your children and providing them with instruction and social conditioning so that one day they may acclimate into the world and conform to what society expects of them.

For a long time that is exactly what I tried to do.

I became a parent like any other and tried to condition my children, to mold them into society.

I pounded and pounded on my square pegs trying to fit them into unaccommodating round holes.

The end result of all this pounding was nothing more than splintered wood.

There was costly damage inflicted upon all of us.



On my journey to raise unique children, I am beginning to believe that I must redefine my ideas about parenting.

Or at least what this role means to me.

Is it my job to mold what is un-moldable?

To search for a "place" for my children that does not exist?

To send them into a world that does not know them?

It all sounds like madness to me.


And so I search to create my own definition of parenthood.

What does it mean to be a parent of a child diagnosed with special needs?

In this role, when and what am I doing that feels right?

After 16 years of special needs parenting, I can tell you, without a doubt, that it is when I assume the role of an observer that the magic begins.

It is when I watch them.

When I really, really study them, noticing the small things that they do or say that seem to speak so loudly.

Only when I am enlightened, and educated,

 am I helpful to my children.

I listen instead of lecture.

It is when I assume a passive role, that I move forward.

In this role, I am not the parent or at least not the one doing the educating.

It is counter intuitive, feeling a lot like parenting in reverse.

But as an observer, I have learned many things from my children.

They seem to know instinctively of life and love and sing of the simple things.

They value things like honesty, love and togetherness.

They possess warm spirits and pure hearts.

Their messages are the medicine the world lacks.


I do not believe my children are alone in this knowledge.

I believe many parents feel similarly.

That our children are trying to tell us something.

But how do children diagnosed with special needs, many who cannot express or speak, communicate these powerful lessons?

I have learned that it is through me.

That this is my job as a parent.

I am not preparing my children for the world

but instead am being conditioned

to prepare the world for them.

To do this, I must not only be an observer of my children, but also a translator for them.

I must take the foreign language my children speak and translate it into English, breaking it down into small understandable parts so others may hear their beautiful songs.

This is my job as a parent.

I am not raising my children.

I am raising the world.....helping it to learn how to see children who are different.

I must teach the world to value these special souls, to accept them, to learn their unusual language.

For their language has a vibration that seems to resonate in those seeking a more meaningful life.

In becoming more loving and accepting of those who are unable to help themselves, perhaps in a way we begin to heal and love ourselves?

Perhaps we begin to heal the world?

I am not a parent.

I am an observer and translator

a teacher

a child whisperer,

an awakener of the world.



Wednesday, April 29, 2015

Let it be

As you know, I am a special needs parent.

Lately, I have been thinking alot about creating a job title for myself.

Who am I exactly?

What is it that I do?

If I whittle down all my responsibilities into one overall title, what would you call me?

Here's what I've come up with:

I am a manager, trying to minimize the effect of long-term chronic illness on my family.

To whittle it down even further, I am a fixer.


Children diagnosed with special needs often suffer from a variety of ailments associated with their condition, these can be severe mental, physical or emotional issues. Minimizing the pain and side effect of these issues requires the assistance of specialists, lots and lots of specialists.

Specialists who also help to fix things.

The way I figure it, the more specialists, the better.

The more I fix my children the better they will be, right.?

Wrong.

I am beginning to notice that my thinking is flawed.

Is all of this fixing really improving my children's well-being?

Or has my mantra become more of a monster?

Are we all becoming too stressed and fatigued?

Victims of the long term effect of constant movement.

Am I transforming into a non-stop fix-it machine?

A human being obsessed with controlling variables.

And is this obsession leading to a full blown need to control everything?

Or in other words, an overwhelming feeling of anxiousness.

Yes, in the world of psychiatry, control issues and symptoms of anxiety are indeed interchangeable.


Interestingly enough,  I have noticed that lately when I pose questions to the universe,

I have been getting some pretty good answers.

This time I questioned, I was surfing the web and stumbled upon an article about Paul McCartney and the Beatles. It was discussing the origin of the song, "Let it be". The song was written by Paul McCartney and references several times the Mother Mary coming to him. Many folks assume this reference to be describing the Virgin Mary.

In several interviews however, Paul insists that it is a reference to his mother, Mary, who died when he was 14 years old. At the time he wrote this song, he and the band were experiencing interpersonal difficulties.

Paul found himself tossing and turning in bed as he lamented over these problems. Eventually, he fell asleep and dreamed of his mother, Mary who came to him throughout the dream advising him to "let it be" to stop trying to control things and allow them instead to fall naturally into place.

He awoke in the morning feeling refreshed with a new desire to allow things to flow more naturally. His renewed attitude encouraged collaboration and the group was able to get over their differences to create more music. This experience inspired him to write the song "Let it be"


This lesson resonated with me and I realized that perhaps I too need to do the same.

I need to resist the urge to fix, to control, to manage.

I need to allow the music to flow.

Despite my life's job description, my strong motivation to improve my children's lives and my frantic fix-it pace, these activities can become habit forming and destructive sending me spiraling down a road that leads to nothing but anxiousness, depression and self destruction.

Indeed a long and winding road.....without a happy ending.

And so, I have decided like Paul, to refresh my thinking, to slow things down, to cancel appointments, to stop fixing.

I will allow our lives to flow more naturally and in-tune with the rhythm of the world.

I have faith that this approach will bring us exactly what we need.

I am devoting myself to this new mantra,
for the health and well being of my family
and myself, I will learn to...
Let it be
 
When I find myself in times of trouble
Mother Mary comes to me
Speaking words of wisdom, let it be

And in my hour of darkness
She is standing right in front of me
Speaking words of wisdom, let it be

Let it be, let it be
Let it be, let it be
Whisper words of wisdom
Let it be

And when all the brokenhearted people
Living in the world agree
There will be an answer, let it be

For though they may be parted
There is still a chance that they will see
There will be an answer, let it be

Let it be, let it be
Let it be, let it be
Yeah, there will be an answer let it be

Let it be, let it be
Let it be, let it be
Whisper words of wisdom
Let it be

Let it be, let it be
Let it be, yeah, let it be
Whisper words of wisdom
Let it be

And when the night is cloudy
There is still a light that shines on me
Shine on until tomorrow, let it be

I wake up to the sound of music
Mother Mary comes to me
Speaking words of wisdom, let it be

Yeah, let it be, let it be
Let it be, yeah, let it be
There will be an answer, let it be

Let it be, let it be
Let it be, yeah, let it be
Whisper words of wisdom
Let it be
 

Wednesday, April 22, 2015

Marathon Mother

I am happy to report that although it was a wet, windy and chilly Marathon Day, Nick's teacher, Mr. P completed the race with an insanely fast time of 3:19....!

To give you an idea of how insane that is........that's 7 to 7 1/2 minute miles sustained for 26.2 miles. That is a grueling pace achieved through an unusually heroic level of mental and physical endurance.

Mr P is a true athlete.

We wish him our heartfelt congratulations on an achievement few in this world could attain.

While watching the marathon, I was struck by what I saw. There were many acts of bravery and heroics. There was selfless sacrifice, wincing pain and nothing-left endurance. There was tragedy and triumph, and the joyous exhilaration that comes from persevering through intolerable pain and overwhelming odds.

All of these heroics and hardships felt uncomfortably familiar to me as I started thinking about my own grueling pace as a special needs parent.

The road race I run to raise my children feels a lot like my own kind of marathon.

Let's see there is:

The sacrifice, the many days of forgoing fun and frolic for logging some hard core mileage.

The pain and physical toll on the body that manifests in an assortment of aches, pains or injury.

The mental preparedness needed to block out unnecessary distraction.

The bravery and intellect needed to disarm or release unsupportive others.

The focus to gather insight and develop skill.

The discipline to carry-on despite boredom, apathy, fear or unforeseen challenge.

The strength of spirit to know you are alone.

The perseverance to keep running toward that unknown finish despite pain, injury, tragedy or fatigue.

The inner determination to know that failure is not an option. 

Yes, I guess you could say I am a Marathon Mother

Running not miles but years

Toward an unknown finish

Unexpectedly finding along the way

Some true and steadfast supporters

Who make running the race of a lifetime

A little more bearable.

Monday, April 20, 2015

Ode to Mr. P

Mr. P has been Nick's homeroom and general ed teacher for two years.

He has been like a guardian to Nicholas, ensuring he is a supported and included member of this 6th grade class. We will be forever grateful to him for the kindness and support he has given us.

You may recall his important contribution to Nick's unusual graduation ceremony last year. You can read more about that eventful day here.

Today, he is running in the first wave of the119th Boston Marathon.

We are sending him our heartfelt support and best wishes for a successful run.

Godspeed to you today John, you are our hero.

 

Good luck to all of the runners in today's Boston Marathon.


Today we remember and honor:

Martin Richard

Sean Collier

Lingzi Lu

Krystle Campbell
 
Our loving thoughts are with your families

Thursday, April 16, 2015

Bubble Boy

Weston is finishing up his sophomore year in high school.

Tenth grade is the year when scholastic demands begin to increase to pre-college level. Classes are demanding and difficult. It is the time in high school when there is a big division between those who can keep up both academically and socially and those who cannot.

Weston is struggling to keep up.

This is when "inclusion", or any attempt at such...comes to a screeching halt. The intellectual and emotional differences between Weston and his peers is becoming too great. It is difficult if not impossible to find an appropriate class for him.

Placing him in a typical classroom is great for him socially but academically he is lost. He is unable to keep up with the increasingly difficult content and the accompanying heavy work load. His IEP calls for test retakes and lower homework demands but even with these accommodations, he is unable to maintain a passing grade, eroding his self confidence and furthering his feeling of failure and isolation.

As a result,  he has been placed in substantially separate classes for most of the day. He is grouped with the same three or four students who face similar academic and social struggles. While this environment helps him to keep up with the work load, it does not provide an appropriate social setting. How does one learn social graces when placed with other students who are equally challenged? He feels removed from the rest of the student population. There is no opportunity for him to build friendships, join groups or meet girls, an important rite of passage for boys his age.


It is as though he is in a bubble, floating through the school but not really participating in it.

Last week, we had some outside vocational testing performed on Weston. For 3 days he took tests and participated in some vocational training.

Today is his IEP to review what we have learned from this examination.

It is our hope that we find a vocation or at least some kind of trade that we can begin the process of preparing Weston.

Some big questions will be answered:

Do we keep him in high school and continue his goal of obtaining a diploma?

Do we forgo the diploma and seek a vocational school that serves as a base to begin the process of finding a trade?

Do we try to do both?

Thankfully, I have my trusty sidekick to support me.


Although you may remember,

these meetings always have a way of making me wake up and smell the coffee.


Friday, April 3, 2015

Right Turn, Clyde

As a special needs parent my job is mostly about the driving.

I drive and drive and drive.

From one specialist appointment to another.

I spend more time behind the wheel than an over-the-road truck driver. I believe I have logged more miles in my lifetime than Richard Petty himself.

This week it was all about driving Weston.

He had two physical therapy sessions, two vocational assessment visits and an appointment with the dentist. Not to mention, of course, the many trips back and forth to school.

Through it all, my faithful son serves as a cautious copilot, instructing me where to turn, cautioning me about approaching vehicles, and signaling to others when it was safe to continue.

In fact the two of us look a lot like this.

 
So I guess I should not have been surprised when my truck decided it did not want to turn left. We are driving to Weston's vocational assessment when suddenly I have trouble steering the vehicle.

"Uh oh," I say gritting my teeth and struggling to pull the wheel around.

"What is it Mom, what's the matter?" Weston asks alarmingly.

"I don't know, I am having trouble turning left," I answer, trying to sound somewhat calm. We are half way to our destination with another 5 miles or so to go and inside I am starting to freak.

"Is everything alright?" Weston asks with concern.

"It's fine," I say unconvincingly, as a long line of panic-stricken thought begins to enter my brain. Did I pay my AAA bill? I wonder to myself, remembering the stray red and white envelope sitting unopened on our kitchen counter.

Should I stop now or continue on?
Will it get better or worse?
Are we going to get in an accident?
Should I reschedule this appointment?
Will it hurt Weston and his chances of finding an appropriate setting for next year?
What should I do? I ask quietly to myself.

I drive cautiously on.

What do I do? What do I do? What do I do? I repeat to myself, feeling overwhelmingly out-of-control and bracing myself for yet another wild ride on the Lisa Train, only this time it really is a wild ride.


"Mom, maybe we should stop?" Weston suggests.

"Here Weston, take my phone," I tell him.

"Look at the driving directions and see if we can get there without making any left hand turns."

"Good idea," he says.

He taps the phone with his usual device-proficiency and scrolls down to the map.

"It looks like we need to make only one left turn up ahead and the rest are all rights!" he says with enthusiasm.

"Excellent," I say relieved and somewhat hopeful that we may just make it to the test site all in one piece.

"Take a left in point one miles," the phone app instructs in an annoyingly confident tone and I resist an urge to toss it out the open window.

"Please let me make it, please let me make it....I beg quietly to myself.

"Hold on to your hat Weston," I say and pull on the wheel with all of my strength.

The truck turns sluggishly to the left but makes the turn safely.

"You did it!" Weston shouts with glee.

"Phew," I say and release the deep breath I had been holding behind my teeth. I thank the powers-that-be for answering my frantic plea.

A few right turns later, we arrive safely at our destination.

Weston jumps out of the truck but before he closes the door to leave, he turns and says,

"Mom please drive safely to the repair shop and remember....."

"Right turn, Clyde!"

We both laugh till we cry.

I am happy to report, I made it to the auto repair shop safely....all right-hand turns of course.

$750 later with a new power steering box and pump, I have assumed my usual place behind the wheel.

Perhaps you recognize me?