Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 16, diagnosed with Prader-Willi Syndrome and Weston 19, 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.




Saturday, May 25, 2019

Mike the Nurse and the Pink Lady

We visit Boston Children's Hospital.....a lot.

We are what you would call, Frequent Fliers.

But since Nick's second spinal fusion surgery in January,
we have reached an even higher level of extreme visitation status.....if that's possible?
We are now even more intimate with a host of professionals there:
We know more:
nurses, anesthesiologists, radiologists, hematologists, phlebotomists....and the like.

You name a department
and there is a pretty good chance we are familiar with one or some of its specialists.

So perhaps it's not surprising that Boston Children's Hospital chose Nicholas
once again as one of their debuting patient stories in their new blog: Discoveries:

Click on the link below to check it out:



This is Mike.

He was Nick's nurse during both of his spinal surgeries.

He reminded me of my cousin, Perry.
My very cool older cousin
who always had a stack of Mad Magazines
hidden in his closet
and some high-tech science experiment
bubbling on the desk in his room.

Mike used his innate creativity
 to ensure all of Nick's post surgical needs were met.
Like this sign he posted outside Nick's door:


Or the tight-fitting white knee socks 
he suggested that would help with Nick's edema.


But his biggest contribution was by far
 his assistance in the administration of:

The Pink Lady

What's a Pink Lady you ask?

To me, it sounds like something you'd buy on Methadone Mile.

Or in a bar

or in a scene from the Movie, Grease

Image copyrights motion picture: Grease
 A metaphor for just another Beauty School Dropout?

Nope.

The Pink Lady is the "saving grace" medicine
for every Gastroenterologist in the country.

It's an enema.

A florescent pink one.

An enema so powerful and effective

it's like the Drano of all constipation aids.



After Nick's second surgery, he, once again, experienced water retention.

Only this time, it accumulated in his abdominal area.

He was placed on morphine as a pain killer.

This drug acted like a paralyzing agent to his digestive system.

His gut motility came to a grinding halt.

Even his appendicostomy flushes

refused to evacuate,

inflating his belly like a balloon,

until eventually his stool began to move upward 

and out of his appendicostomy port in his belly button.

It was time for desperate measures.

But try telling a young man

who has just bravely and compliantly

withstood his second spinal surgery

that he now needs an enema.....!

Are you kidding me...????

Really????

WTF??

Enter Mike the Nurse.

"I'll prepare the you-know-what...!"
he says to me
"While you try to distract him,"

We do our best to perform
a convincing rendition of Starsky and Hutch

Good Cop/Bad Cop 
routine

I pull out my cell phone and call Pete

"I know Nick, let's talk to Daddy," I say enthusiastically.

Mike and I turn Nick on his side.

I hold my iPhone in front of Nick's face.

"Hi Daddy," Nick says "I do NOT want to do an ENEMA."

(emphasis on the word ENEMA)

"That's OK Buddy," Pete says calmly.

It's clear to see, he is no special needs parenting amateur.

Hey Nick, I have an idea," he says,

"Can you help me sing the SpongeBob song?
I forget the words?"

He begins to sing.

"Ooooohhhhh, who lives in a pineapple under the sea?"

Pete's expert parenting distraction technique

works like a charm and Nick begins to sing.

Mike works quickly at Nick's opposite end.

"If nautical nonsense be something you wish," Pete continues

'Then drop on the deck and flop like a fish!"

shouts Nick gleefully into my iPhone.

Image copyrights SpongeBob SquarePants

I am, at the moment,
eternally grateful for the genius of Stephen Hillenburg

(It's the little things)

Mike smiles like the Cheshire Cat.
Our little scheme is working.
 He proceeds quickly but gently
so Nick is not disturbed.

"Altogether now," Pete says...

"SpongeBob SquarePants....!"

"SpongeBob SquarePants.....!"

"SpongeBob"

"SquarePants....!"


Pete and Nick sing the grand finale

together

with enthusiasm.

And voila....!

Mike is finished.

Pink Lady effortlessly administered.

Patient happily entertained.

"We're all done? Nick asks

"Yup," said Mike, "that's it."

"Oh thank you Mike!"

Nick says with much love and appreciation.

"I believe that is a first for me," Mike says.

"never had a patient thank me for that."

I am happy to report that the Pink Lady

performed

effervescently.

Housekeeping kept their clean-up cart

permanently outside Nick's door for a couple of days.

While Mike and I continued to keep our young man

happily sidetracked

mayhem managed

for the rest of our stay.

Spy vs Spy trademark Mad Magazine

Thursday, April 11, 2019

Boston Children's Hospital's Thriving Blog

My son Nicholas is diagnosed with Prader Willi Syndrome.

He has many complex medical issues.

He visits with many specialists located at Boston Children's Hospital.

Recently, he had spinal fusion surgery performed there

to correct the severe curvature of his spine.





The plaques:




Boston Children's Hospital has a blog named "Thriving"

In it, they write of their many unique patients and their very touching stories.

Today, Nick's adventure is featured on their blog:


 to read our story and many others just like it.

As readers of On a Life Less Perfect,

I believe many of these pieces

will resonate with so many of you who visit this blog.

I hope you enjoy reading them.

Monday, December 24, 2018

Role Reversal

As I mentioned, Weston struggles with depression.


For young adults diagnosed with ASD,
finding the root cause of this crippling cloud
can be an challenge for the clueless parent.
There are a multitude of factors that can contribute to this pervasive disorder:
bullying at school
medication issues
unexpressed emotion
perceived attacks
 lack of attention
tooth ache
body pain
constipation
sensory overload
transitions
upcoming events
stress
and in Weston's case, even the weather

It is usually by using a scientific process of elimination.
that we arrive at an answer.

Mad scientist mothering
Weston thrives for awhile
and then
WHAM
we are right back where we started
with Weston feeling down.

Recently, he began to develop more significant symptoms.
He was falling asleep at work,
experiencing sleep hallucinations  
and having some motor difficulties.

I decided to call Nick's Neurologist:
Dr. Masanori Takeoka


Dr. Takeoka is one of our favorite and longtime physicians.
Part of our "dream team" of caring professionals,
 who we also consider to be part of the family.
He has a quiet, gentle disposition.
 He listens attentively to our concerns.
He has made many astute recommendations
 in treating Nick's overall complex care
that resulted in a better quality of life.

I don't know how you ever thank someone for that? 

After hearing my concerns about Weston, he agreed to schedule a visit with him.

He examined Weston, reviewed his latest Neuropsych eval 
and noted there was some regression.

He explained that although Weston's symptoms were
 "in and of themselves" 
not concerning.

Taken as a whole, they warranted further investigation.

He wanted to perform an overnight EEG.

"I know you have Nick's surgery on January 28th," he explained.
"But I would like to do this soon."

Pete and I held our breaths as he continued.

"Let's do it as an outpatient exam. 
He can have the leads applied at our satellite facility in Lexington. 
He can then return home and go about his daily routine. 
In the morning, he can return to Lexington
where they will remove the leads. 
I would also like to schedule him 
for another neuropsych evaluation."

And so...


Weston's EEG test is scheduled for January 2.

He is surprisingly happy about all of this.
I believe he is as anxious as I
 to learn more about what's going on inside his brain.

Nick is also very excited.

 This time, he is NOT the patient.
"Mom," he said, "It's my turn to help Weston put his button's put on!"


Sunday, December 23, 2018

The Trooper and the Humanitarian

Nick's second spinal surgery is scheduled for January 28.
This time,
Dr. Glotz will fuse two more of Nick's lower vertebrae
and attach thicker and longer screws
to the base of his spine. 


These stronger and longer screws
will anchor Nick's spine to better support the weight of his upper body
and hopefully prevent any additional movement of his internal hardware.
 The end result we hope will be a straight, strong and healthy back for Nicholas.

At least that's the plan anyway.
(minus the WTF factor)

In the meantime,

Nick's back pain and mobility worsen day by day.

He is home bound and in a wheelchair,
restricted from excessive movement.


Since the opiod epidemic exploded here in Boston,
pain medication is no longer prescribed by physicians to manage long-term pain.
They are required, instead, to search for other options.

This has had a significant impact on Nick's recovery.

He is in pain and unable to walk very far.
We tried a specially-designed back brace to help improve his alignment,
hoping this may provide him with some abdominal support 
that might help to alleviate the pain.
Unfortunately, it only made him become incontinent.

Tylenol and Motrin did little if anything to relieve his discomfort.

Tramadol was not an option due to his subclinical seizure activity.

And so, in true Nick fashion,
he persevered,
without complaint
like a trooper.



As a family we do our best to occupy Nick at home 
and wait for January 28.

Weston, on the other hand, is enjoying his new school.

He is enrolled in a program designed for young adults on the autism spectrum.
It is located on a college campus where he is learning life skills.

This transition, however, coupled with Nick's ongoing pain and medical issues 
have increased his symptoms of anxiety and depression.

He often speaks of his depression and inability to make himself happy.

One day at school however, as part of their school-to-work curriculum,
an opening became available 
for Weston to participate as an assistant
 at a local company
that provides physical therapy services 
to elderly patients recovering from injury or disease.


Weston's job for the day
was to help elderly patients to safely utilize exercise equipment.

For the first time in many, many months, 
Weston came home from school smiling....!

He was happy.

Genuinely happy.

"Mom" he said, as he burst through the front door like a heat-seeking missile.
"I helped a guy get on the treadmill today who reminded me of Grandpa!"

Weston and Grandpa in July 1999

"Really," I answered, trying not to show my overwhelming surprise.

"Yeah, he was kinda grouchy....in a funny way! I got him up on the treadmill though."

"That must have been something to see," I laughed.

"It was so funny, and kinda special all at the same time," he said.

I turned my head so he wouldn't see me cry.

"You know Mom. I figure, if I can't make myself happy,

maybe I was put here to make other people happy!"

He turned and ran up the stairs to share the happy news with his father.


I don't know about you
but I do not know many 19-year-old teenage males
who can get that much pleasure out of assisting the elderly?

I wonder about the many years of Weston's life
devoted to serving his brother's  needs

his kind heart and his can-do spirit

It occurred to me that perhaps
 caring for Nick,
all these years 
accompanying him to medical appointments and surgeries
 has had a positive effect on Weston.


For he truly is a humanitarian.


A good citizen.
I couldn't be more proud of my children
and who they are
despite our many hardships.

Friday, November 16, 2018

Amnesia

Nick's recovery from spinal fusion surgery 

has been a very slow, slow process.

His number of follow-up appointments 

on the other hand, has blown WAY out-of-control. 

We are running around like madmen, 

We have had to play catch-up 

with all of his typical providers: 

endocrine, neurology, psychiatry etc.


now add to that

 a back brace specialist, primary care provider and pulmonologist.

 Is it any wonder I am beginning to suffer from amnesia?

I am forgetting everything.

My keys?

My cell phone?

My coffee cup?

My brain is engulfed in a post surgical fog.

With all this running around here and there,

always driving, fixing, repairing, serving,

it is no wonder I can think at all.

And so I do what I do best.

I complain.

This morning, Nick and I drive to see yet another specialist.

"Aw Nick," I say, "I forgot my cell phone."

 "God dammit!"
" I would lose my head if it wasn't attached," I groan.

"MOM"
 he says sternly, turning to look at me.

"I would find it for you."

I am struck silent by his words.


Like an arrow sprung bluntly into my chest,

with this single sentence

my loving son reminds me

that all of this driving and fixing and healing and helping

has made me forget

 what is truly most important in life.

I have forgotten how to love.

Nick has a way of humbling

 even the most tireless of special needs parents.


Thursday, November 8, 2018

It's not about the Color of your Party; it's about the Content of your Character





There is no disputing that this year's mid term election was America's answer.

Photo: New York Times
The American people spoke.

They went to the polls in record numbers.

And they said:

It's not about party, it's about character.

It's not about mindset, it's about core values.

It's not about civic pride it's about civility.

It's not about nationality, it's about humanity.

It is not about politics or presidency, it's about diversity and acceptance.

It is about:

We the people



I am truly inspired 

by what this unique group of diverse individuals is capable of achieving.

in the spirit of cooperation

with respect for one another

for the common good

of all.




Monday, November 5, 2018

Pete Saves The Children?

Remember how I told you
 that my husband, Pete
 is a man of very few words, 
an introvert, a thinker, 
a man who processes things inwardly?


You remember how I told you that one of his accounts is Trinity Church?

Photo: artsboston.org
This unique Boston landmark is located in Copley Square on the corner of Boylston Street, opposite the Prudential Center and the John Hancock building.

Well, this also happens to be a prime location for folks looking to collect funds from.......shall we say a more affluent public.


And so it is not unusual that the Trinity Church area attracts its fair share of homeless folks, survey takers, non-profit collectors and scam artists; all looking to shake down its Prada parading pedestrians for their pretty pennies.

Enter Pete.

Heading to work.

Minding his own business.

His mind full of worry over the news that Nick will require more surgery.


Never mind Weston, who, as you know is diagnosed with Autism/Asperger's. He is adjusting to a new school environment, managing his own symptoms of depression and trying to weather the long-term effect of our chaotic lifestyle.


Both of our children's struggles 

are weighing heavy on Pete's mind this particular morning.

Enter the Scam Artist.

"Hi," he says to Pete, "you look like a hard working guy who is doing well for himself."

Oh Ooooo...Big mistake....Huge...!

This cocky crook has obviously underestimated his potential prey.

"I do?" asks Pete maintaining a polite tone to seduce the obnoxious orator.

"Why do you ask?" Pete continues, toying with the aggressive assailant.

"Well, I work for the Save the Children Foundation," says the man.

"I'm sorry did you say Save-the-Children?" Pete asks, 

unsure whether he has heard this man correctly.

"Yes, Save the Children Foundation," affirms the poor unsuspecting carpet bagger.

Pete laughs out loud at the absurdity of the situation.

But quickly collects himself so he does not tip-off the oblivious con man.

"Please continue," Pete says, 

easily enticing the eager entertainer

 so he wanders further and further into Pete's deadly fly trap.

The young man is elated by his good fortune. He has found an easy mark.

With a charismatic expertise, it is clear this professional 

knows how to strum on the old heart strings.

He pulls out a wrinkled paper photo 

of poor African children who desperately need Pete's help. 

"They are sick, poor, under-nourished and in need of supplies," he says. 

For a few dollars every month he can swipe Pete's credit card 

and Pete can make a difference in saving the life of a child.

"Really?" Pete says.

Pete exhibits a remarkable amount of restraint, 

refusing to reveal his cards, all of them aces.

In fact, for a man, with a lifetime of impulse control issues,

 his willpower is downright astounding. 

"These are the children you would like to save?" he asks.

It is obnoxiously apparent that the "photograph" of the poor children 

has been downloaded from the Internet. 

The children are well-dressed and smiling.


"Yes, these are the poor children," replies the man 

certain that Pete is about to reach into his wallet 

and hand him a fist full of dollars.

"Tell me, where do they live?" asks Pete.

The man hesitates, his eyes shifting nervously left to right.

"In Kenya," he replies sheepishly.

"Kenya?" Pete asks, to be sure he heard the man correctly.

"Yes, Kenya," replies the man a little less confident about his ability to close the deal.

"Have you been to Kenya?" asks Pete straight-faced and curious.

"Yes," answers the man, his shoulders starting to droop 

as he begins to realize he has seriously 

underestimated the intelligence of this working class man.

"What did you do there?" asks Pete.

"What do you mean?" answers the man.

"When you were in Kenya, helping these children?' asks Pete.

"What did you see when you were in Africa?  What exactly did you do to help?"

"I didn't see anything, I was just there for the children."

"Oh, I see," says Pete.

"If you want to donate to these helpless children, 

I can just swipe your card," says the man.

He is losing his advantage. 

Like a true predator, he cuts to the chase and goes immediately for the kill. 

He asks Pete directly for his credit card.

 Out from of his backpack,

 he pulls his handy dandy portable credit card swiping machine.

Ta-dah!

"I have a better idea," says Pete.

And the predator is now about to become prey.

"I have two children right here in this city that you can help right now. How about that?"

The man stares blankly at Pete.

Pete continues looking the scam artist squarely in the eye.

"These children are both diagnosed with special needs and they are my own children."

"This is Nicholas."

Pete shows him Nick's photo on his iphone.

"He has been diagnosed with Prader Willi Syndrome." 

"Ever hear of it?" Pete asks coyly.

"No," says the man.

"This is Nicholas recovering in the ICU at Children's Hospital,

where he had 12 vertebrae fused

during his spinal fusion surgery last week."


"We just found out he has to go back in January 

for more surgery to fuse two more vertebrae.

Here is another photo of the surgeon removing his bandage for the first time."


The man's face loses all color and expression.

He is speechless and shocked.

"I have another son, Weston, he's on the Autism Spectrum."

"Ever hear of that?"

"Yes," says the man, "I have a cousin who has Autism," trying to redeem himself.

"Ever spend any time with him?" asks Pete.

"Ever collect funds for Autism Awareness?"

This time it is Pete who goes in for the kill.

"No," says the man defeatedly.

"Here is a photo of Weston," says Pete.

now in his full unleashed glory. 

"He suffers from severe depression.

 He has been hospitalized so many times we have lost count."


"Perhaps you would like to help me save my children?" Pete asks.

He looks at the fearful fund-raiser directly in the eyes.

"But you don't have a credit card swiper," the man states starting to sweat profusely.

He looks as if he is about to run away.

"That's OK," says Pete, 

"I'll just write it down. Give me your credit card number and expiration date." 

Pete pulls out a pen from his pocket.

"Someone might steal my number if you write it down," he says.

"Don't worry," said Pete "You can trust me. I'm a hard working guy."

"How about some cash?" Pete continues his assault "You must have some of that?"

Pete is in his glory.

The man has no idea what's happening.

The scam artist is overwhelmed and defeated, his mouth hangs open.

With no potential for closing the sale and no sound exit plan, 

he turns and walks/runs away.

"Where are you going?" Pete asks. 'I thought you wanted to save the children?"

Pete is elated, a heavy burden lifted.

He heads to Trinity as a new man.

He shares his encounter with the fine folks who work at the church.

 They pull up the security footage and laugh hysterically

 as they view the instant replay of Pete scamming the scammer.  

He unleashed years of pent up special needs parenting frustration

 on the fraudulent fund faker.

And it worked.

It worked so well that the other day the phone rang.

Pete answered it.

   (You remember what I told you about ringing phones in the Peters' household)

It was a guy selling solar panels...….

Let's just say by the end of the call...…...Solar Panel Guy began to see the light. 




Sunday, November 4, 2018

"Go Back, Jack, Do it Again"

On Wednesday ,
we head to Boston to meet with Dr Glotzbecker and his Ortho Team
 for Nick's follow-up to his spinal fusion surgery.


We head up to the Ortho floor. 
It is packed full of patients, gobs of young boys with broken arms,
 most of whom are running around the room wrecking havoc and creating chaos. 
It is easy to see how perhaps they have sustained their injuries.


Nick is sitting in a wheel chair we managed to snag from the lobby. 
He longs to run after these boisterous boys. 

At last, a nurse calls Nick's name.
 We are escorted into a room with a large therapy table. 
Dr. Glotz's assistant, Joe enters the room 
and places Nick on the table to examine him. 

I tell Joe about Nick's left hip pain, 
He examines Nick.
 He tells us that it will take some time for this muscle to strengthen. 
This is normal and will improve once he begins physical therapy. 
He finishes up quickly and explains that Dr Glotz will be in soon to speak with us.

Phew, I feel relieved about the hip.

In the meantime,

Nick has found the button that moves the therapy table up and down.

GRRRRRUUUMMMBLLLE.....the table rumbles upward. Nick smiles.

GRRRUUUUMMBBLLLE.....the table rumbles downward. Nick is delighted..

The little things.

Dr. Glotz comes in and tells us that Nick needs to have a CAT Scan.

Say what?

He says that the screws on Nick's lowest vertebrae have come loose.

He says that based upon the results of the CAT Scan, 

we will have three options:

1) Nick will need immediate surgery to fuse two more vertebrae to repair this issue.

2) Nick can wait 3 months to heal a little more before he needs surgery to repair it.

3) We can go home and Nick will not need surgery.

He tells us that they can squeeze Nick in right now for the CAT Scan.

We do not have to wait for the results.

WTF??



Pete and I look at each other, We are not ready to hear this.

Is it any wonder why our fight or flight response is completely out-of-whack.

We have lived on the edge of this cliff for a very long time.


"What about his hip?" I ask.

"That will get stronger once Nick begins his physical therapy. 
Right now he is prohibited from any kind of therapy
 as this may loosen the screws further. 
He is only allowed to walk. 
No school, no physical activity,
 just walking."

WTF?

I have not had any time to prepare Nick for a CAT Scan procedure.

We do not have a choice.

This is a very familiar place for us....sudden shock and no choice..

"What are we doing?" Nick asks.

"We need to take some more pictures of your back for Dr. Glotzbecker," 
I try to explain to him as calmly as possible, 
but my brain is about to explode with fear.

"Do I need to wear a Johnny?" he asks.....!

"No," says Dr. Glotzbecker, "the technicians there are all very nice."

Nick is relieved.

The little things.

We practically run down to the second floor CAT Scan Room,
pushing Nick in his wheel chair at the speed of sound.

The CAT Scan room is dark and quiet. 
It is decorated in a bottom-of-the-ocean motif. 
Nick loves it. 
The technician has prepared a fluffy pillow
 on the  bedded area for Nick to lay down.  
It is so inviting, 
I want to curl up on it,  
hide inside the machine 
and never come out.

I hold Nick's hand as he moves slowly into the long circular tube.

Miraculously, he endures the procedure without a hitch. 
I am surprised since he is usually very adept at reading my inner energy, 
especially if I am stressed.
We run back to Ortho to wait for the news.

Pete and I are sweating and completely silent,
  
as we wait for Dr Glotz to enter the examining room.

We are both in shock.

"I should have expected this," 
I say disappointed that I didn't see this one coming.

"How could we know," Pete answers.

"It's the WTF Factor, and I should be prepared for it by now," I state.

"Stop beating yourself up." Pete replies, 
"We ain't got time to bleed," he says jokingly

From the movie: Predator 1987
We laugh and I remember exactly why I married him.

Dr. Glotzbecker enters the room.

Pete and I hold our breath.

"Well, it's the second one," he says.

"Which one is that?" I ask, my mind a complete blank. 

All I can remember are the words "more surgery" 

I cannot for the life of me remember the numbers.....!

"We will need to give Nick's body more time to heal; 

but he will need more surgery. 

We do not like to go in and operate again so quickly;

 as it increases his chances for infection. 

However, this procedure will need to be done. 

If you look at the CAT Scan,

you will see that the screws on his lowest vertebrae have come loose.

 He is a big guy, just the pressure of bending down

 was probably enough to do the damage,  

The screws were not able to support his weight. 

I will need to go in and fuse two more vertebrae 

I will need to use thicker and longer screws, 

anchoring them in well so they do not loosen."

Dr Glotz shows us the  CAT Scan.

He points to the open space around several of the bottom screws. 

He explains how they have moved.

"I have a surgical opening in January. 

That should give Nick plenty of time to heal. 

The surgery will be much less invasive 

but the recovery time will be the same. 

We will use Complex Care services 

to coordinate this once again, 

doing everything the same, 

since he did so well."

He leaves the room.

Pete and I look at each other.

We are speechless.