Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 12, diagnosed with Prader-Willi Syndrome and Weston 15, 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, 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

Tuesday, March 3, 2015

Ye of Little Faith

I have come to believe,
 
that as a parent of children diagnosed with special needs,
 
I have a choice.
 
I can choose to see this life as some form of punishment.
 
I can complain about how tiring and difficult it is
 
or,
 
I can choose to see this life as something special.
 
 
As an opportunity to meet, teach. learn, share and grow with others,
 
to let go of fear

to allow things to fall

to embrace chaos
 
to seize the moment
 
to be present
 
to love unconditionally
 
and unrestrained
 
to have faith in my heart that I am exactly where I am supposed to be,
 
learning,
 
 and doing exactly what I am meant to do,
 
for myself,
 
and others.
 
I have faith.
 
I believe.
 
 
I understand what is important.
 
I choose.

Sunday, February 15, 2015

Ice Dam-Nation

The snow storms and blizzard conditions have been relentless here in the northeast.
Last night, we received another 20 inches of snow.
Tonight temperatures with wind chill will fall to 15 below.
Winds are howling.
We are approaching 80 inches of snow in the last 3 weeks.
That is an insane amount of snow in such a short amount of time.
And yes, there is more snow in the forecast.
This is an historic winter.
One like I have never experienced in my life.
We are very snow hardy here in New England,
but these extreme conditions
and relentless snow accumulations
 have become difficult
 and dangerous with many roof collapses reported. 
 
For those of you unfamiliar with the term ice dam, 
this, my friends, is one of epic proportions on our roof.
 
Ice dams are large blocks of frozen ice
 that prevent water from draining properly off the roof.
Melting snow turns to water on the roof and begins pooling,
unable to find a way off the top of the house,
 it ends up leaking into even the most well-built roofs.
Yes, we have water dripping into our living room.
We have hired a crew to remove snow from our roof on Tuesday
(that is....if we do not get any more snow)
 
Honestly, it looks like an Ice Age has descended upon us.
 
 
Weston and I have shoveled the snow off this deck at least 5 times.
There is now no place to put it.
 
 
The walkway is almost as tall as Pete (who is 6'1) 


Our backs hurt from shoveling,
We are tired and house-bound.
We are sun-deprived and snow-weary.
 
 
Can you see the swing set in this picture?
 
This scenario is an appropriate metaphor for our life as a special needs family.
We are trying to stay positive and resilient.
But honestly, we are praying for an end to this madness!
 
 

Saturday, February 14, 2015

Love

"What the head makes cloudy, the heart makes very clear."
 
 
Happy Valentines Day




Tuesday, February 10, 2015

Snowluge

I have added a new word to the dictionary.

Snowluge: \sno-luj \ 1:  an overflowing of the land by snow 2: a deluge of snow.


The Boston area has received over 60 inches of snow in the last 14 days. While we are hearty New Englanders and acclimated to heavy snow accumulations over the winter months; we are not used to getting this much snow....in just a few weeks.

Combine this with frigid temperatures, kids home from school for days on end and you have a pretty good idea how grouchy we all are getting around here.

Remember the plant Pete was trying to kill?


It is completely submerged under a mountain of snow.
 
 
The height of the plowed snow at the end of our driveway.

 
mountainous snow banks

 
buried mailboxes


hidden stop signs

Can you see this one?

 and this one?

  Even the trees look small
 
business are difficult to see behind walls of snow
 
 
Oncoming vehicles are even more difficult to see
The bad news is.......we have two more storms a comin' this week.
The good news is......my Christmas Cactus is starting to bloom
as it does every spring.
a sign of things to come?