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.




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 are ready to fight and will not stop until the beast is silenced,
 once and for all.

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, 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 is as 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.

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.

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?

Thursday, March 26, 2015

Phone Trouble

I am not a stupid woman.

In fact, when it comes to grasping some of the more complex issues related to Prader Willi Syndrome, I think I've done alright. I understand the role of the hypothalamus and its effect on my youngest son's appetite. I can describe, in excruciating detail, the genetic malfunction that occurs on the 15th chromosome to cause this rare disease.

Why is it then that I have such trouble understanding my eldest son?

When it comes to Weston, I am lost.......but good.

I admit it,

I am not always adept at decoding behaviors associated with autism, Asperger's or ADHD. It is as if he speaks a different language.

I believe Weston is describing me correctly when he refers to me as his clueless mother. I struggle to catch on.

There are things I DO understand about Weston. He is kind, curious, observant and quick. He is NOT quiet.

To say that Weston likes to talk is perhaps an understatement. Comments, questions, thoughts and ideas, spill continuously from his mouth. Like machine gun fire spraying a wall, fleeting thoughts spring immediately to life on the lips of my loquacious lad.

If he thinks it, he will say it.

Unrepressed self expression is indeed his fervent forte.

So why is it then, that he is deathly afraid of speaking on the telephone?

"Nooooooooo...! Mom don't make me do it!" he screams as I hand him the telephone.

Horror stricken, he places his hands over his mouth and back peddles away from me. To him, it is if I have suddenly transformed into the gruesome Freddie Krueger, snarling and slashing at him with my metal claw and equally-chilling evil speaking device.

image by Micro Chen

"But Weston," I plead. "It's grandpa on the phone. You haven't spoken with him for a long time. He misses you and would like to speak with you for just a minute, "

I gently extend the phone toward my timid teen.

"No, Mom, I can't!" he cries and races from the room.

What on earth did I do to provoke such a frightened response, I wonder?

I am perplexed and explain to the bewildered grandpa that Weston is still not ready to speak on the telephone.

I have had many long, gentle discussions with my terrified teen in an effort to understand the exact cause of his telephone anxiety. His answer is always the same.

"I don't know Mom, I just do."

This from the child who entered the world with an innate understanding of electronic devices and Gameboy gadgetry. Cleverly conquering the controls of his favorite video pastime equipment. I incorrectly assumed that smartphone technology would hold a similar allure to my tech savvy teen.

Alas I was wrong. And so as a family we are working together to help Weston to overcome this fear.

He is taking some small steps that he doesn't seem to mind, like using the phone when it is time to order pizza from our local take-out place. He is calling 411 when we need a telephone number. He is answering the phone when telemarketers ring, kindly reminding them to remove our number from their list.

All of these activities used to help nurture his confidence.

He is slowly building his endurance and creating his own unique telephone persona.
He is discovering who he is.
He is facing his fear.

He has helped me to realize that I may never understand what motivates or inhibits others. Perhaps it is best for me simply to accept folks as they are, to embrace quirkiness and acknowledge I do not always need to understand.

Wednesday, March 18, 2015

Testosterone and Homeostasis

One thing about being the parent of a child diagnosed with Prader Willi Syndrome.....like it or not, it improves your vocabulary.

Yes, thanks to Nicholas, and the inordinate amount of time I spend in physician's offices, I have learned the meaning of a host of rather impressive technical terms. Multi-syllable words that, more often than not, describe a very simple process.

I am surprised just how easily these long, silly words have found their way into my vocabulary. They spew from my lips without much thought, that is until I begin to explain some of Nick's issues to others and am met with raised eyebrows, blank stares, quizzical looks or plain old hysterical laughter.

The latest silly word to enter my vocabulary is homeostasis, a fancy word that means nothing more than maintaining stability, balance....the status-quo.

Why do I know this word?

Let me explain.

Last week we met with Nick's Endocrinologist. This is Nick's hormone doctor. Children diagnosed with Prader Willi Syndrome possess a malfunctioning hypothalamus.

According to Healthline:

"The hypothalamus is a section of the brain responsible for hormone production. The hormones produced by this area of the brain govern body temperature, thirst, hunger, sleep, circadian rhythm, moods, sex drive, and the release of other hormones in the body.

This area of the brain is small, but involved in many necessary processes of the body including behavioral, autonomic, and endocrine functions. The hypothalamus' primary function is homeostasis, which is to maintain the body's status quo system-wide."

Nick is 13-years-old and up until now, growing normally. His height and weight were proportional to other children his age. His hypothalamus was doing its job keeping things in balance.

Lately, however, Nick's height has slowed and weight increased, despite a strict diet and consistent growth hormone dose. Things are becoming unbalanced.

So, since Nick's body does not manufacture the hormones he needs, his endocrinologist must determine what hormones to start and when.

At birth, we began growth hormone shots to help Nick to grow in a healthy manner. We give these injections to Nicholas at home every night and for the most part, it works.

But now, Nick is entering puberty, and since his body is not producing testosterone, his growth has slowed. We must now introduce this hormone into his body and begin a course of testosterone shots.

Although he may never be able to sexually reproduce, testosterone will help Nick's body to develop in a healthier way by increasing his muscle mass and metabolism, helping his bones to become longer and stronger and managing his height/weight ratio so that it is maintained in a healthy proportion.

As with any new drug, there are, of course, side effects.

One of them is increasing the bone age of a child. This means the child grows too much, too quickly resulting in the fusing of the child's bone plates and the halting of growth.

There is also a risk of increasing behaviors. Since children diagnosed with PWS already experience poor emotional control, this may become extreme and will need to be monitored by caregivers in and outside of the home.

Increased behaviors during teen years are however, a "rite of passage" for most and I, for one, do not want to deny my son this important opportunity.

He will receive a low dose intra-muscular injection of testosterone once every four weeks at his pediatrician's office. This will continue for six months. His dose will then increase, doubling in size and continuing for another six months. After that, a maintenance dose is established for the rest of his life. Thankfully, there are other delivery options, like a patch that he can wear on his skin to alleviate a lifetime of injections at the doctor's office.

And so as it is with all things Nicholas, I have become like his hypothalamus, I am the regulator of homeostasis....the balancer of systems, the maintainer of the status-quo. It will be important for me to evaluate this treatment and ensure it benefits him physically without pushing him emotionally over the edge.

It will be yet another big decision I need to evaluate in the ongoing care of my children.



p.s. I am not sure homeostasis can be achieved in a household that now possesses two teenaged boys.....oy!

Friday, March 6, 2015

The Purchasing Power of a PWS Parent

OK, so maybe you've seen them...the commercials that tug at your heart strings?

You know the ones, sad, hurt animals staring helplessly at the camera, shaking with fear, pleading for folks to save them by sending money now. Commercials that can cause even the most hardened-of-heart viewers to break down and cry like a baby.
 
The latest "sadvertisement" comes from the World Wildlife Fund, asking folks to save the tiger. It starts out with a woman speaking in a stern, pleading voice, describing that...

"Since 1900, the estimated number of wild tigers has declined from 100,000 to as few as 3,200. Your monthly donations could mean the difference between survival and extinction for species and wildlife around the world...."

A photo is flashed of boastful butchers with blood-soaked, tiger-skin trophies.

Well my dear readers, this is all it takes for the altruistic Nicholas to want to help, not to mention of course, the acquisition of a fluffy soft stuffed tiger that's yours for free with a single donation.


"Mummy, pleeeease can we help?" begs Nicholas.

Tiny tears pour from his face as he looks at me with an angel-like expression of profound concern.

"We need to save them," he pleads, grabbing my hand and looking deep into my eyes.

This is the second time in less than a week, he has bounded into action, appealing to his similarly soft-hearted mother and tight-fisted ruler of the purse strings.

I stop for a moment and wonder how on earth I am going to explain to this benevolent boy the meaning of the word, sentimental sap.

"Nicholas, sometimes companies will try to make you cry so they can get you to send them money, lots and lots of money" I explain futilely.

"But Mom," he says, they'll send us a stuffed tiger!"

I try to hide my amusement as I think of all the gobs and gobs of gimmicky goods we grabbed over the years.

Yes, we are what you call the target audience of every obnoxious advertiser known to Nick Jr television. You can be sure that if it is a Dream Light, a Flashlight Friend, a Snuggly Sack or a Hide-Away-Pet, we own it.

We are the soft-hearted, sentimental saps sadvertisers seek.

I suspect very shortly we will be adding a "save-the-tiger friend" to our growing collection of "call today and receive free" merchandise.....Oy!

Nick's Furry Flashlight Friend