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, 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?

 

Thursday, February 5, 2015

What Real Inclusion Looks Like

Every moment and
every event of every man's life on earth
 plants something in his soul.
-Thomas Merton

 
I believe in soul mates. Not the romantic, man-of-your-dreams kind of soul mate, but instead folks who come into your life for a reason. With these folks you share a strange feeling of familiarity and friendship, a connection that seems to defy time. There is a feeling of a united purpose, that this unity serves a greater good which will benefit something or someone greater than yourself.
 
You may recall the long battle I fought last year to allow Nicholas to spend another year at his current elementary school.

At this institution, is a unique group of educators, general  and special education teachers who believe they can make a difference in the world by creating a more effective form of inclusion.

Two years ago, they asked me to come speak to their students, to educate them on the specifics of Nick's disability. They asked me to teach their students how to relate better to Nicholas.

To read more about the success of these presentations click here and here.

This week Nicholas and his best buddy, Alex were asked to participate in the Sixth Grade Ancient Egypt Exhibition. Here, each student was asked to design and manufacture a symbol of ancient Egypt. Nicholas received a lot of help from sixth grade teachers and students in preparing his very cool-looking pyramid for the show. He was very excited.

Tuesday, parents were asked to visit the classrooms to observe the student projects. For most parents it was a time to view their child's handiwork. But for me it was something more.

I knew my son's project was not going to be an award winning creation. I was not visiting to evaluate his manual dexterity or his fine motor skill. I was not there to compare his design skills to others. In fact I am acutely aware of just where my son rates on the scale of mental and physical ability. No, unlike others, I was more interested in observing how Nicholas related to his classmates. Does he belong? Is he valued? What type of interaction takes place with "typical" students?

What I saw, moved me to tears.

These teachers allowed me to see the fertile seeds of compassion and tolerance they have instilled in their students. Take a look......

Mr. B modeling the "get close" communication technique to his students.
Notice the student's positions and body language as they happily converse with Nick.
 
This is Nick's principal, Mr. G
Nick enjoys his laid back energy
He likes to hang with this down-to-earth and comfortable leader. 

This is Mrs E
She was the initiator of this new kind of inclusion.
 
In the white sweater is Ms E, sped teacher to Nick and Alex
She has been instrumental in facilitating these events with regular ed teachers.
Here Alex, shows the pretty girls his pyramid (after checking with Ms E)
 
And last but not least another one of my favorite photos
Nick talking with "the girls"
 
My visit to Nick's classroom was a day I will never forget. There was discussion, respect and most importantly, interaction between Nicholas and his classmates. It was clear that Nick was valued as an important and worthy member of his class.
 
For me, it was a soul moment, a rare opportunity to see the goodness, the value, the understanding and perhaps most importantly, the love he brings to others. It also gave me hope for a new generation of children who do not fear special needs students but instead, embrace their unique gifts.
 
This is the kind of interaction that can occur when typical students are given the tools to relate to kids who communicate differently. This is what happens when the stigma and fear associated with "special needs" is removed. 
 
These children and these educators have given me hope for our future.
 

Tuesday, February 3, 2015

Every Team has a Journey

When Tom Brady stepped up to the podium to speak to the media after a spectacular Super Bowl Sunday performance, he said,

"...every team has a journey and a lot of people lost faith in us early, but we held strong, we held together, and it's a great feeling."

For the long time readers of my blog, you may remember my affection for this consistent and underrated quarterback. You may remember that I questioned why it was so difficult for others to "see" him. You may remember how much I admire his integrity, his good sportsmanship, his devotion to his teammates.


If not, click here, to read my post comparing Tom's invisibility and understated greatness to what it feels like to be a parent of a child diagnosed with special needs.

I am a Bostonian, so by default, an avid sports fan. I am a faithful follower of the Sox, the Celtics, the Bruins and of course, the New England Patriots. So when Malcolm Butler boldly intercepted the almost certain touchdown pass to steal Super Bowl victory and win the game for the Patriots, you can believe I jumped for joy, just like Tom.


In fact, once again I can relate to exactly how he feels.

And NOT because he added to his already impressive stats and earned:

Most completions thrown in a Super Bowl (37)
Most halftime completions in a Super Bowl (20)
Most career touchdown passes (13)
His 4th Super Bowl win
His 3rd Super Bowl MVP award

And NOT because he threw 37 completions, with 50 pass attempts, earned 328 passing yards and made 4 touchdowns

Nope.

What allowed Tom Brady to finally be "seen"...to achieve official public confirmation of his steadfast and superstar status was not by an effort he made himself but instead by the bold and brilliant effort of a little known team mate named Malcolm Butler. This humble and undrafted player came seemingly out of nowhere to intercept the final pass and win the most important game of Tom Brady's career.


Malcolm described that he had a vision of making a game-changing play.

What made Tom Brady finally achieve recognition,  his visibility, if you will, was not of his own efforts but the efforts of his team, the many humble and remarkable men, seemingly sent from above to offer divine-like assistance.

It seems ironic to me that many times  I describe my life as a "journey" where we are accompanied by many brave and humble souls sent from above to guide and support us. So perhaps I shouldn't be surprised to hear Tom say,

"It's been a long journey. It's just great to win."

 
Congratulations to Tom Brady and the entire New England Patriots team,
2015 Super Bowl Champs
You will always be champions to me

Once again I would like to dedicate this post to my father, who was without a doubt, one of the Patriots truest and most faithful fans who never got to see such a victory.

Another win for you Dad!