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.




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.



Saturday, November 3, 2018

I Woke Up this Morning...

didn't recognize the woman in the mirror.


Recovery for Nicholas has been slow and painful.

The narcotics prescribed put him to sleep.

Tylenol and Advil are not strong enough to manage his discomfort.

The in-between med, Tramadol is not an option since Nick experiences seizures.

Each day is a slow progression toward freedom and mobility.

We were not provided with a wheel chair upon discharge.

Nick cannot walk too far, so we are housebound until our follow-up with Dr, Glotz.

 It's like Groundhog Day revisited.

Photo: tvandmovienews.com

Nick complains about hip pain when he walks up the stairs.

I place my hand on his left hip and feel it move inside the joint.

"That can't be good," I say to Pete.

"Add it to our list for Dr. Glotz," Pete replies.

Maybe he needs some PT now that his spine is sitting directly in the hip socket?
we wonder.

Nick is tall and straight but temporarily unable to bend at the waist until healing occurs.

 He cannot perform the activities he enjoys.


Do you remember this?

Yes, we still have it.
Yes, Nick still enjoys pushing it around.
However, in his current state he cannot bend over to push it.
He's frustrated
I am trying to design/create/invent a handle so he can continue to play with it.
What is it they say about invention being the mother of necessity?
I wonder how many inventions were developed 
by mothers of children experiencing complex medical issues?

Nick is also very bored and getting tired of his full-time care-taker....me.

I am getting tired of his full time caretaker.

I long for the days when.....



I remind myself that this is temporary situation.

That with time and exercise
 soon, Nick will be a strong, healthy and happier young man.


I look forward to our upcoming appointment with Dr. Glotzbecker

Wednesday, October 31, 2018

The Man Scar

My euphoric homecoming
is quickly replaced by the sudden realization 
that my caretaking duties have only just begun.

Nick's spinal incision is protected by a surgical dressing.
It is a long, thin strip of sterile gauze covered by clear plastic.
It extends the entire length of his back. 
The problem is....it's itchy.
 For a young man diagnosed with PWS, 
this is a too-good-to-be-true, perfect target for skin picking.

And so, it isn't long before Nick scratches his neck.

"Mom," he cries, "my neck is bleeding!"

He holds out his hand, it is soaked in blood.

(cue parental panic attack)


Ahhhhhhhhh

check emotion

stop, breathe, evaluate, respond

After 16 years of special needs parenting, my instinctive response takes command. 

I slowly peel back the sterile strip from the top of Nick's incision.

It looks like Nick has removed a few of the stiches.

The incision is bleeding...you remember his clotting disorder, right?

WTF?

I need to work fast.

I cut and remove the top inch of Nick's sterile dressing.

I wash the blood carefully away from the wound.

I sterilize it with an alcohol wipe.

I apply another gauze strip and adhere it to the long length of dressing.

It works, but I do not know if this will stop the bleeding.

I find Pete and tell him we need to go to Children's.
"NOW"

Weston decides to stay home.
He is overwhelmed. 
He has had enough of hospitals and emergencies and waiting.
It is just too much for him to handle.

It is eight o'clock in the evening and it is off to Children's Hospital we go.

Thankfully, most of the traffic is headed out of Boston.
Pete makes good time.

The ER team puts us on the fast track.
 They place us in a quiet room away from the masses.
The Behavior Plan that just keeps on giving.

It isn't long before an Attending from Ortho is called down to look at Nick.

He uncovers the small dressing I have applied to Nick's neck.

The bleeding has stopped.

He tells us that this is a very common issue with spinal fusion surgery.

Nick may not have "picked at his wound"
Say what?

"Sometimes the trapezius muscle will pull on this incision and separate like this. 

I have arranged for you to meet with an Ortho surgeon.

Your appointment is scheduled for tomorrow morning in Waltham.

A surgeon will remove his entire dressing and evaluate Nick's incision."

He redresses the gauze I applied and sends us home.

Fastest ER visit to Children's ever.

The next day Pete heads to work while Nick and I head to Waltham, 

one of the satellite facilities of Children's Hospital. 

It is still a long traffic-ridden drive for me and Nick.

He is uncomfortable sitting in the vehicle for so long.
But we finally arrive at the facility.

I ask the parking garage attendant if there are any wheel chairs in the garage?

"No Ma' am," he says,
I hate when men call me ma' am....and I wonder if I look as old as I feel

The attendant continues: 
"If you drop your son off up front, you can park your vehicle and meet him up there."

"No Mummy, please don't leave me alone! " Nick screams.

"I can't do that," I try to explain to the gentleman.

"Well," he says, 
there are only a few handicap spots up front.
 It looks like they are full but you can take a look, if you'd like.

"I'll do that," I reply.

The hospital is up a hill from the garage.

 As I drive up, sure enough all five spots are full.

That's right five handicap spots for an entire professional building.

This is Children's Hospital for Christ's sake.....!

I spot an empty wheel chair.

"Nick," I plead, 
"Can I put you in this chair and wheel you inside? 

I'll park quickly and then come back and get you."

"NOOOOOOOO.....!" he screams.

Just then a lovely nurse walks along side our vehicle.

"Excuse me," I ask her, 
"Is there a security guard available somewhere who can help me?"

"Yes," she says, "wait a minute I will go get him."

She returns with a uniformed man.
I thank the Lord for this kind-hearted woman.

I explain to the guard that I have a young man whom I can not leave alone. 

There are no handicap spots available. 

He has just had spinal surgery and cannot walk from the garage up this big hill. 

The kind man shows me a spot by the curb where I can park.

"Thank you very much!" .

Just then a woman exits the building.
 She explains that she is just leaving and would I like her parking space?

Do I really need to answer this question I think to myself......HELL YES!

I smile politely and give her the thumbs up.

The security guard watches me struggle to unload Nick out of the car.

Post surgery, Nick is now almost 6 foot tall and just under 200 lbs.

Five foot tall mini me is struggling to manage.

The guard rushes over to help.

He maneuvers Nick into the wheel chair and pushes him into the building.

I am touched by his random act of kindness.

"Thank you for you kindness and humanity," I say.

"We are all God's creatures," he says smiling and shakes my hand warmly.

Nick and I head to the Ortho floor.

 We are ushered immediately into an exam room.

An Ortho surgeon comes in to evaluate Nick's wound. 

The nurse assistant removes the dressing and cleans the wound.

It is the first time since his surgery that I have seen his incision.

I gasp


I am humbled by son's overwhelming resilience
his kind and gentle spirit
that never wavers
despite such incredible hardship.



And his love of the little things in life


Monday, October 29, 2018

Space, Time and Love

The Complex Care Team has slowed down the frantic pace of Nick's care plan.
 The churn 'em and burn 'em march toward discharge has lost its momentum.
Nick is beginning to thrive.

Reflecting back upon his life,
this magical combination
 of a little extra time
and a lot of extra love
has been the exact science to his success.

From his first feedings





to his first steps 



to his success at school.




It has always been about giving Nick more time


and more love

Yes, that's a Red Sox hat on Weston! Are you surprised? 


With all these thoughts swirling inside my brain,
I need to find some clarity.
So, I plop Nick into a wheel chair and head back up to the Garden
for the final element of Nick's healing trifecta:

More space.


We heed Florence Nightingale's enlightened advice
and bask in this vast open space filled with fresh air and sunshine.

It restoreth our souls.

Again.

We visit the collection of interesting statues



I think Nick was trying to figure out how to snag the teddy bear

before we head back to the floor.

As we approach our room we are greeted in the hallway by the Complex Care Team.

They explain that Nick has passed the criteria for discharge.

We can go home.

Home?

I am so happy, I can cry

I feel as if we have bumped into Glinda the Good Witch.
She is waving her magic wand behind my head and whispering softly in my ear:

Tap your heels together three times and say...
There's no place like home.
There's no place like home.
There's no place like home.


Be it ever so humble.


Saturday, October 27, 2018

Funny Walls

There is something unusual about the energy of the Complex Care Team.
They are quiet, calm and relaxed.
The Residents are not mindless minions.
 They behave more like a flock of grazing sheep,


 rather than the usual
pods of possessed piranha.


There are no lame-ass theories or ego's to tip-toe over.
In this team, there is nothing but silent observation.
It is a refreshing change.

They listen to my concerns about Nick's coke-colored urine.


They address each of my questions, 
like:
 Why did we removed the antibiotic?
And is this causing the discoloration?
And why don't we give him more Lasik since it seems to be working?

They are patient and kind.
It is as if I am being counseled by the Dalai Lama.
And it's working, I'm comforted.


The team explains that we cannot give Nick too much Lasik
 or it will interfere with his body's electrolytes. 
So, the process to remove 
the 12 extra pounds of fluid in his tissue 
will take a few days. 
They do not have an answer for Nick's coke-colored urine.
But believe it may be super concentrated
 on the over night until his fluid balance regains itself.

As I mentioned before,
Nick has a way of humbling Harvard's medical elite.

Once Nick's urine clears,
he loses the excess weight and does not require the Lasik;
he can go home.
They are expecting this will take a few days.

It is as simple as that.

I thank them for the information.

I settle down immediately and prepare Nick's schedule for the day.

I am not stressed.

I remember that Cheryl and Troy are on duty tonight and
for the first time, since our visit,
I begin to feel like I am not imprisoned within the hospital walls.