Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 15, diagnosed with Prader-Willi Syndrome and Weston 18, 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.

Sunday, March 31, 2013

Happy Easter

Nicholas still believes....with all his heart in the Easter Bunny
Weston learning to ride Dad's toy
Too loud for Nicholas
Resting on the front step
No chocolate for Muffy this year...thank goodness
Happy Easter to all our readers
Thank you for sharing our adventures!

Friday, March 29, 2013

A Family of Strangers

"You must be excited," the friendly nurse at Children's Hospital said to me.

"You finally get to bring home your baby," she added smiling brightly.

I looked at the pretty young woman and lied through my teeth.

"Yes, I am, " I answered. But deep down inside, I was terrified.

I left the hospital with my newborn infant and a one-page description of a bizarre and frightening disease called Prader Willi Syndrome.

At home, Internet research listed nothing but horrific descriptions of individuals plagued with insatiable appetites, uncontrollable behavior, and morbid obesity. Scholarly articles described the clinical aspects of PWS with gruesome pleasure, documenting disturbing issues of skin picking, OCD and self injurious behaviors. The more I read, the more it seemed that the tiny infant I discharged from the NICU was destined to become a monster.

I felt scared.

Family and friends who supported me throughout my life were now, like me, unprepared and unfamiliar with this strange and devastating new disease. They too were suffering. And although they offered me their love and support; they could not provide me with what I needed most....familiarity and instruction.

The astute physicians at Children's Hospital outlined the physical aspects of the disease but they too were overwhelmingly unprepared to educate me on the reality of what life would be like living with PWS.

The future looked so very frightening.

I turned once again to the Internet where I found several communities devoted to serving parents of children diagnosed with PWS.

These small groups of strangers suddenly became my lifeline.

From these parents, I learned how to feed a child who was too weak to eat.

I learned about important new therapies, supplements and medications that would improve the strength of my weakened son.

As he grew, I learned how to diffuse behavioral meltdowns, lock kitchen cabinets and soothe scratched skin.

I was provided with instruction, support, and a deep understanding of the overwhelming challenges we faced.

Like soldiers who serve on the battlefield together, these individuals became my family.

And much like the dynamics in a "typical" family, we are, at times, dysfunctional, lashing out and dumping our frustrations on those who share our deepest wounds. But like this family, when we share our difficulties, we also become stronger.

From these invaluable fellow parents, I learned how to raise a child with an incurable disease.

I learned that despite my son's terrible diagnosis, a happy and fulfilling life was possible.

This is Fred, Amber, Chris, Alberta, Denise and Fred Jr. Although I have never met them, their journey living with PWS has given me much hope and inspiration.

Amber, dressed in yellow, is 33-years-old and was diagnosed with PWS when she was four.

Although she is Chris's daughter, Alberta and Fred (her grandparents) have raised her.

Now in their 70's, Alberta and Fred first met at school when they were 10-years-old, where Fred abruptly announced to his classmates,

"That's the girl I'm going to marry!"

Married for almost 60 years, they have raised three children, and fostered several more. They have 6 grand children and 12 great grand children.

Alberta explains that Amber learned to walk when she was 3-years-old. But since that time she has not stopped moving. As a child, she participated first in dance classes and then in a martial arts program where she earned an orange belt. She started bowling when she was five and continued to play throughout high school, earning the highest average.

"We are so blessed with what she can do," explains Alberta recalling when Amber was a small child and begged to ride the roller coaster at the amusement park in Virginia.

"I can still hear her yelling RIDE, RIDE!"

Amber and her family continue their thrill-seeking adventures. This summer, they rode a series of zip lines across a canyon and over the Snake River in Idaho, where according to Alberta.

"Amber was the first one to ride on all of the lines."

Keep in mind Alberta and Fred are in their 70's!

Alberta and Fred love to travel and exposed their daughter to this adventuresome lifestyle at a young age. They traveled in the US from coast to coast with Amber in a backpack or stroller. When she got older, they visited places around the world, like Rome, Australia, Alaska, Mexico and Jamaica.

Alberta, Amber and Fred in Rome

"She rode in the back of a jeep with birds flying at us, down a dusty road in Jamaica and helped paddle a raft down a back river in Cozumel." explains Alberta.

They have encouraged Amber to become independent.

"She has been to camp for almost 20 years, traveling 12 hours each way to get there, we try to expand her mind."

Currently, Amber continues her active lifestyle. She loves to ride horses and participates in shows where she earned ribbons this year in pole bending and barrel events.

She continues to enjoy bowling. She is in an adult league where she has participated for 10 years, earning a high average of 160

In the summer, you may find her swimming in her pool at home.

 Amber has several pets, seen here playing with her dogs, Molly, Abbey and Lucy. The two giant pumpkins were grown in their garden.

 She is active and adventuresome, with many hobbies and interests. She has traveled around the world and made many friends. She is a kind, loving and independent young woman with a happy life and a free spirit. She was raised by two selfless individuals who refused to let words like disability or Prader Willi Syndrome alter their quest to enjoy life.

And although I have never met this family, they have given me the precious gift of hope for my son and his happy future.

How do you thank someone for this?

Life is a daring adventure or nothing at all. - Helen Keller


Please click on the icon below to visit me at Hopeful Parents.

Wednesday, March 27, 2013

Old Age Meets Space Age

Ok, so I don't know what I did...but lately I am getting bombarded with ads in my email inbox.

You know, the usual stuff like: weight loss products, home security systems and schools that allow you to get your degree from home.

Today, however,  I received an ad for this!


Now, I must admit, I may not be a spring chicken any more, but I am certainly not ready to lay a patch in a nursing home hallway in one of these just yet!

In fact, I hope by the time I am ready to motor down hallways popping a few wheelies, design engineers will do a better job of creating products for the elderly that are more....well..... cool.

Honestly, I do not think I would mind getting old if I could travel around in one of these.

or perhaps one of these....
As most adults my age, I grew up unknowingly addicted to television, and seduced by the clever imaginations of folks like Hanna and Barbera and Walt Disney, I thought for sure by the 21st century, we would all be working for Spacely Sprockets and driving to work in one of these.....

In fact when it comes to designing products for the elderly, imagination has taken a back seat to functionality and durability. I suppose from a practical standpoint this makes sense. But, to me, imagination, is everything. I wonder....if there were more products that embraced the philosophy that getting old should be fun......perhaps we would have a much healthier and happier elderly population.

If I were Bill Gates, I would hire William Hanna and Joseph Barbera (are they still alive?) and build an entire elderly community based upon "Jetson" technology.

I would feel much happier about getting old if I knew I would be spending my time here.

Doing things like this....

or this....

I might even be tempted to live in a place like this.
How about a Magic Kingdom as an Assisted Living Facility?
Ah, if only design engineers thought more like cartoonists.

Thursday, March 21, 2013

Band aids, Bubble Wrap and Prader Willi Syndrome

Besides an insatiable appetite, children diagnosed with PWS also suffer from issues related to OCD (obsessive/compulsive disorder). They will engage in the same activity or speech pattern again and again.

Skin picking is a form of OCD behavior and many of our children suffer from this compulsion. It can become so severe, that hair, eyebrows, toes and fingernails are pulled from the body. Scratches, cuts and open wounds are particularly susceptible to skin-picking issues. Since many of our children also experience a diminished pain sensation, these wounds can become severely infected, threatening the good health of our children.

For our son Nicholas, fingers are his primary target. He has many spots on his hands where he has peeled skin, causing his fingers to bleed. So far, we have managed to control this behavior by covering his wounds with band-aids, lots and lots of band-aids. We have used so many of these plastic dressings, I am considering buying stock in Johnson and Johnson.

 I believe for Nicholas, the band aids are a helpful release from his obsession since I have found a few of his furry friends wearing similar flesh-colored accessories.

Reminding Nicholas to "stop picking" is like adding fuel to a roaring fire. It does nothing but increase his anxiety about his obsession. This increase in anxiety further escalates the unwanted behavior.

He has explained,

"Mom I know I shouldn't pick at my fingers but I can't help it. My brain keeps telling me to do it."

I believe these obsessive activities are in some way soothing to Nicholas, helping him to stay focused and alert. It is a calming mechanism he uses to stimulate his brain and alleviate anxiety.

So, what is a parent to do?

Some PWS parents have had success using a product called PharmaNAC. This is a product available for order on Amazon without a prescription. Click here to purchase. It comes in 900 mg effervescent tablets that dissolve in water (like Alka Seltzer). Taken once a day, these fruit-flavored tablets help many of our children to stop picking. For some, it is quite a miraculous supplement.

For Nicholas, it has fallen short of its promise, mostly because he hates the taste of the fruit-flavored drink and refuses to drink it, which is practically unheard of....in a child diagnosed with PWS. I have dissolved the tablets in every drink imaginable and still he will not drink it.

So alas, we have employed other techniques in an effort to keep his hands busy.

One of his favorite activities is peeling the paper covers off his crayons. Unfortunately, this activity creates tiny piles of wrapper shavings that litter the living room floor. Crayons sans wrappers also have a mysterious way of collecting inside Muffy's crate and other unmentionable places. Let's just say Muffy droppings become much more colorful when Nicholas begins to peel crayons.

who me?

So, we have directed Nick's restless hands to other activities like stringing beads, painting, coloring and something he discovered on his own, the zipping and unzipping of his many backpacks.

If you are the parent of a child diagnosed with PWS, the greatest skill you will ever develop (besides your ability to distract), will be your ability to solve difficult problems and implement unusual solutions.

Over the past few months I have been challenged to think of more creative ways to keep Nick's hands occupied. Yesterday, I opened his monthly GH (growth hormone) shipment. Inside the package was a large swath of bubble wrap.

I wonder???........I thought to myself.

I handed my son the large sheet of bubbles.

"What's this Mummy?" he asked.

"Well," I explained, "Do you see these bubbles?"

"I see them," he answered.

"You poke them until they pop.....like this," I said and snapped one of the bubbles.

Nick's eyes grew bigger as he pulled the sheet towards him and started to poke. He laughed delightedly as he poked the rows and rows of clear plastic bubbles.

Perhaps I found the solution to Nick's obsession? And since Nicholas suffers from fine motor difficulties as a result of his low muscle tone, this activity may also help to strengthen this weakness.

But I had forgotten all about this latest bubble brain storm until this morning. I was making coffee in the kitchen while Nicholas played quietly in the living room before school.

I noticed, quite suddenly, that the living room had become silent. My Super Mummy Senses sprang to a heightened level of alert since it is usually this kind of quiet that accompanies a compulsive session of finger picking. I walked quietly toward the room and stopped. A subtle noise began to fill the room, it was the all-too-familiar sound of


Nicholas was playing with his bubble wrap.


I breathed a sigh of relief, thankful for the reprieve from the sight of bloody fingers.

I must admit, I had to repress my own OCD-like tendencies as I was tempted to join him in his bubble-popping frenzy.

There's just something about snapping those bubbles.

I now have a new problem to add to my growing list.....

Where can I buy a giant roll of cheap bubble wrap?

I guess it's either band aids or bubble wrap to the rescue.

Either way, perhaps it would be wise for me to invest in both of these companies?


Tuesday, March 19, 2013

Spring into Snow

Here in New England, March is a very fickle month.

It is not unusual to see either warm spring-like temperatures prompting the trees to bud early or cold coastal storms that dump a foot or more of  heavy, wet snow. One of the most severe snow storms in New England history dumped over 2 feet of snow on the first day of April.

Can you guess which extreme we weathered today?


 Cold wet snow and heavy winds battered us for most of the day.

Tomorrow may be the official start of spring, but here in Massachusetts, Old Man Winter steadfastly refuses to let go of his frosty grip.

 This has been the 5th snowiest winter on record. Most of us here are grouchy and sun-deprived, we are ready for warmer weather and the bright colors that accompany spring.

School was canceled again today and it is likely that the boys will be attending school 'til July.

 It was good news for Nicholas, however, who was more than happy to spend another day resting quietly at home.


Monday, March 18, 2013

Medically Complex

Oh how I hate those two words.

It is the description Nick's neurologist uses to describe his medical fragility, his lengthy list of diagnoses and his lack of resiliency in fighting infection.

I hate these words not only for the weakness they imply, but also because I forget them.

Nicholas is struggling to recover fully from his tooth surgery on Friday. He is cranky and short-tempered. He is difficult to redirect. His stuttering has worsened and he is having trouble sleeping.

I wonder if this medical complexity is causing him to struggle with the side effects of anesthesia?

During his procedure, the anesthesiologist used a variety of sedatives to help him sleep. When he was transported into the recovery room, his hair, skin and clothing reeked of the powerful smell of a potent gas. As I sat beside Nicholas, I could almost taste the bitter drug and began to feel dizzy.

For two days after his surgery, his breath carried the distinctive smell of the powerful medicine.

Last night, Nicholas had difficulty falling asleep. He wiggled back and forth in his bed. He complained that something was tickling him.

So today, I kept him home from school.

In my mind, I hear Dr Takeoka's voice telling me over and over.....He is medically complex.

I realize the painful truth that a strong spirit does not guarantee a strong and healthy body.

Today, Nicholas is relaxing quietly in the living room. He tells me throughout the day, that I should not schedule that appointment for him ever again!

In the past 11 years, Nicholas has had a lot of surgery. There have been g-tubes and tonsillectomies, orchiopexy and lacrimal duct operations. He has weathered them all with his usual brave spirit and resilient attitude. But this procedure was different, the recovery more painful, it is an experience he will remember for a long time.

"Mom," he said to me with a serious tone,

"Please don't make me go on that appointment again. I want to see Dr Lindi."

Dr. Lindi is our local dentist. She is kind-hearted and gentle. Her quiet demeanor has helped Nicholas to tolerate his most difficult of dental appointments.

Yes, this tooth pulling episode from hell has made Nicholas realize how good he has had it.

I am anxious to hear what he says to Dr. Lindi on our next visit to the dentist.

In the meantime, it is a quiet day for Nicholas and me.

Saturday, March 16, 2013

Shakespeare and Children's Hospital

We have visited Children's so often in the last few months, it is beginning to feel like we are performers in a Shakespearean play.  The day is filled with suspense, sacrifice and tearful moments. Our visits to the hospital are like a rehearsal performance with each of us practicing and perfecting our particular parts.

Dad is the chaperone, carrier of all our stuff and keeper of the cash for food, parking and toy purchases.

I am the tour guide. I make sure we arrive on-time, communicate with all personnel who care for Nicholas and accompany him as he is transported from place to place.

Weston is the faithful companion providing support to Nicholas throughout his entire hospital stay.

And "Nicholas The Brave" is of course, our champion.

Our play begins on the eve of surgery. Mom and Dad are talking in the kitchen.

"So, did you hear from the hospital yet?" Pete asks anxiously.

"Yup, Nick's surgery is scheduled for noon tomorrow. But we need to arrive by 10:30." I answer.

"Oh man!" Pete exclaims. "OK, let's see, if I set my alarm for 2 am, I can give Nick his breakfast before we go."

Children diagnosed with PWS have an insatiable appetite. They live their lives in dire anticipation for their next meal, to deny them food could be considered cruel and unusual punishment. As a parent of a child diagnosed with this starvation syndrome, it is necessary to be unusually creative. By waking up early, we can provide Nicholas with his much-anticipated breakfast and distract him constantly throughout the morning until it is time to depart for the hospital. This distraction game will require all of our efforts.

We leave the house at 8:30am and bear the brunt of Boston's rush hour traffic.

We park in our usual place,

8th floor Children's Parking Garage (roof)
Weston gets nudgy looking over the edge.
It seemed fitting to take a family photo here...where we spend much of our time
Crossing the street toward Children's
The "rolling ball" exhibit in the lobby
Nicholas loves to watch it
 au bon pain
Today, we are careful to distract Nicholas as we pass by it
 "Mom, I'm hungry!" Nicholas cries. "Can we get something to eat now?"
"Yes, we can get something to eat here," I say, "Let's just check in first."
We quickly direct him to the elevators and ask him to push the "up" button.
Distraction, distraction, distraction.
We arrive at the Day Surgery Department where Nicholas seems to sense my anticipation, and begins to cry.
"I DON'T WANT TO HAVE AN IV!" he wails.
The receptionist quickly whisks us off to our own private room. I arranged this room before our arrival explaining to the nurses that Nicholas suffered from severe behavioral issues and it would most likely benefit all their patients if we were in a room with a door on it.
Thankfully, they listened and guide us to an empty room.
Nick is crying and explaining loudly to the staff that he does not want to take his pants off. Thankfully, I gave another heads up to the staff and our assigned nurse, Trisha, is prepared for this outburst. She explains calmly to Nicholas that he may keep his pants on.
unhappy camper
 Weston and Dad are finally allowed into the room and our angry little man is quieted.
good medicine
the comforter
 I slip into my usual role as communicator and speak with the oral surgeon. She explains to me that if Nick's back teeth are impacted, they will need to pull them. If so, Nicholas may need to spend the night in the hospital due to his blood clotting issues.
"What?" I ask in disbelief as this is the first I have heard of a possible overnight stay.
Uncharacteristically, I am not prepared for this possibility.
Nicholas is diagnosed with borderline vonWillebrand's disease. This is an inability of the blood to clot efficiently. Similar to hemophilia, but not as life threatening, since the blood will eventually clot. In procedures where there may be a lot of blood lost at once, this can be a serious condition. Nicholas would require blood clotting medication and overnight observation.
I do not know why I didn't think of this. I have neglected to bring our emergency overnight bag. The thought of another night's sleep in the parent-eating beds at Children's has paralysed me. 
Dr. Yi, our young dentist, is standing beside the oral surgeon and senses my fear.
"'We will need to take ex rays first, to take a good look at these teeth. There is a good chance we will not need to remove them."
He has calmed my fear and will probably never know how much his kind words have meant to me.
Nicholas and I are finally transported to the surgery area. The nurses place a mask over his face and he begins to scream....bloody murder. Fortunately, the deep breaths from screaming force large gulps of gas into his lungs and he quickly falls asleep. I am escorted back to the waiting room where Weston and Pete are withering from a lack of food.
We head immediately to the cafeteria where we spend an obscene amount of money on a few sandwiches and drinks.
Next we head to the lobby where Pete purchases two of his favorite oatmeal cookies while Weston pleads for a toy vehicle from CVS.
Pete performing his duties of carrier of the stuff and keeper of the cash
Many a patient got a good chuckle from watching the big man carry a pink  Dora backpack
 We head back to the waiting area. As we look out the window, Pete says,
"Hey Lis, take a look at this. That's the unit I worked on at Dana Farber."
For those of you not familiar with the Boston area, Dana Farber Cancer Institute is a world leader in adult and pediatric cancer treatment and research. It is located next to Children's.
The "unit" he speaks of is on the Dana Farber building on the right
It is underneath the giant silver pipe that makes a 45 degree turn to the right
Hubby is an HVAC mechanic and spends much of his time on Boston rooftops
Time seems to move more slowly as we continue to wait. Pete places our stuff on a chair.
Weston and Pete get silly while I pray that Nicholas and I do not need to spend the night. I begin to feel frightened and sad. I miss Nicholas and wish I could be by his side. 
Finally, Dr Yi arrives in the waiting room and tells us that all went well. Nick's back teeth were not impacted and we do not need to stay.
We head to recovery where the sleepy Nicholas is starting to wake.
"Muummy, I'm hungry," he cries as he first begins to open his eyes.
Mary, our delightful Recovery Nurse, gives Nicholas some Italian ice. The cold ice soothes his sore throat and washes the blood from his teeth.
He is uncomfortable but we dress him quickly and place him in a wheel chair so we can transport him to our car. Weston asks if he can wheel his brother.
But before we exit the hospital, we make the important first stop in the lobby where Nicholas can watch the rolling balls and he can finally eat.
 It is a long exhausting day, but it is finally over. We are all anxious for a reprieve from this hectic pace. We are ready to put our hospital performances on hold for awhile and seek some relaxation time before our "personal play" is ready to begin again.