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, April 29, 2012

Pot Roast and PWS

Today, I learned something new about Nicholas.

Our local supermarket had a sale this week on pot roast. It has been very chilly here lately, and I hadn't prepared a slow-cooked meal for the family in a while, so I decided to buy it. Now, I must be the worst PWS mother in the entire world, because I didn't even think about how it would effect my insatiable son.
I browned the meat, cut up some vegetable and placed the pot on the stove to cook slowly throughout the day. It wasn't long before the smell of simmering, seasoned stew filled the entire house. Shortly after, came an all too familiar question.

"Is it time for supper yet Mom?" Nicholas asked.

And suddenly, it dawned on me. The constant smell of meat and vegetables cooking slowly on the stove was like torture to Nicholas. His already overblown hunger suddenly went into overdrive.

I had made a terrible mistake.

"No Honey, it's not time yet, I answered."

Now, this line of questioning is our typical routine that usually starts at about 4 pm, just as the dinner hour is approaching. He will ask me (about one hundred times) when it is time to eat? I will try to answer calmly while I distract him enough to quickly prepare our evening meal.

Today, however it was only 2 o'clock.

How would I distract him for an entire afternoon?

I decided to send both boys outside to play. That worked great, for while, but like I said before, it's chilly here, so it wasn't long before I heard the door to the garage open, the sound of clomping feet and a little voice asking once again....

"Mom, when is it time for supper?"

That was it, I piled both boys into my vehicle, told Pete to watch the pot roast, and headed to the park for the rest of the afternoon.

Now, my husband Pete is not a culinary expert. In fact, his entire recipe repertoire includes pancakes, Kraft macaroni and cheese or hamburgers. That's it....nothing else. I had no idea, what my pot roast was going to look like when I returned from the park.

I have learned a valuable lesson.....

Pot roast and PWS do not mix!


Saturday, April 28, 2012

The Dance of Life

This is Rachel (16) and Arey (17) as they prepare for Arey's Junior Prom on April 14, 2012.



I would like to thank Arey's mother, Maria, and Rachel's mother, Donna, for sharing this beautiful photograph. As you will see, because of these women, and their handsome teens, I am a Hopeful Parent.

Rachel and Arey are your typical high school students who, like my son, Nicholas, just happened to be diagnosed with Prader Willi Syndrome.

PWS is a complex genetic disorder affecting the 15th chromosome. Some symptoms include: low muscle tone, high pain tolerance, difficulty regulating body temperature, hypothyroidism, behavioral and cognitive challenges, speech difficulties, low metabolism and seizure potential.

But perhaps the most frightening aspect of this syndrome, is the lack of ability for individuals to control their eating. Children and adults diagnosed with PWS are always hungry. Physiologically, they lack the ability to control their hunger and if left unattended, will eat life threatening quantities of food. As a result of this flawed hunger signaling, all individuals diagnosed with PWS must live in an environment where food is secured. At home, refrigerators and pantry cabinets must be locked. All access to food throughout the day and night, must be controlled always, for the rest of their lives.

Ironically, at birth, most children diagnosed with PWS, experience low muscle tone making it difficult for them to feed. Most are diagnosed as "failure to thrive". My son, Nichols was no different.


I spent the first few years of my son's precious life living with a constant and crippling state of fear and an overwhelming sense of sadness.

How could the future be happy for a child born with this diagnosis?

I resigned myself to living this unhappy life that was thrust so mercilessly upon me.

I plodded through life, sad and depressed, a darkness seemed to follow me. I was anxious and angry. An indifference kidnapped my body while fear suffocated my hopeless heart.

But soon I realized, that caring for a child diagnosed with special needs required an almost superhuman level of endurance. There were doctor appointments, meetings with specialists, surgeries and therapies. If I was to survive this chaotic lifestyle, this life-draining fear and unhealthy sadness would somehow need to be diffused.

And so I reached out to other parents.

I listened to these special few, who, with their careful words and thoughtful advice began to heal my wounded heart.

They gave me tools and techniques for handling the difficult aspects of this bizarre syndrome. They showed me photographs of their happy children and told me of their fulfilling lives.

Yes, it would not be easy, they said, but encouraged me to embrace and "see" that underneath the great sadness of this syndrome, there was also great beauty. The secret they said was to silence that fear, to look for the beauty and live each day knowing there were others who understood my difficult life. They told me there was always hope.

And so these strangers have become like a family to me. The happy news of their children's success challenges me to put aside the feelings of sadness and regret, to see what is truly important in life. I am inspired by their stories.

I would like to share one of these stories with you.


Rachel and Arey met about 5 years ago at the PWSA of Pennsylvania chapter meetings. They see each other at these outings and events and enjoying speaking with each other on the phone. At the prom they danced all night and had a great time together.

"I remember when he was born, thinking this day would never come," said Arey's mom, Maria.

"Rachel has three older sisters who all have enjoyed going to many dances. I was so nice to see her enjoying herself too." says Rachel's mom, Donna.

They danced so much throughout the night, that both complained of sore feet. The dinner they said was delicious. Both parents pre-orderd their dinners, orchestrated the entire night and made sure they had a one-on-one aide.

"I asked Arey who he sat with -and he said no one. He and his date were alone. I felt that stab of pain and grief - but they did not! They thought it was great to have the table to themselves," Maria explained.

"Rachel especially liked being able to stay over Arey's house in his sister's room. She got to spend the whole next day hanging around with her boyfriend, who she hardly ever gets to see," Donna added.


Arey with his mother, Maria and father, Steven

"Arey is the youngest of six children. He has three older brothers and two older sisters, who have all contributed to his growth and development. I could brag about all of my children, I am so proud of them all. Arey is an incredible young man. He is kind, thoughtful and loving. We were told that he would not have a sense of humor so we teased him mercilessly in an effort to teach him. We may have come to regret it as he is now sarcastic and humorous." says Maria.

Arey also enjoys reading.

"He has a wonderful vocabulary that surprises me sometimes....again, we were told he would not be able to have much control over this - so we used more difficult words and explained the meaning of them from the time he was little."

Maria explains that he will be in a program in high school that will help him learn job skills next year and after he graduates.

Hobbies for Arey include collecting elephants and playing video games.

"He has over 200 elephants ranging in size and make. His smallest is less than 1/2" and his biggest is 2 feet. He has elephants made from wood, fish bones, glass, jade, ceramic, and clay, one that Rachel made for him," says Maria

Arey enjoys video games on the computer and other game systems. He pays for them using his own money that he earns from doing chores. He cleans the yard after the dogs, weeds the garden and lawn, and takes out the garbage.

Recently, Arey has begun a weight loss program and has lost an amazing 35 lbs. Once weighing in at 212 pounds, today he weighs an incredible 177 lbs.  His trick, Maria says is having everyone on the same page in the house.

"Arey has the desire to loose. He is at the age where it really matters to him. He wants to loose the weight and I am very surprised at how easy its coming off. He evaluates what we are going to eat and knows how many calories he can have. Last night we decided to have Chinese. He said it wasn't a good idea as it would ruin his diet. He went online to find out what he could have that met his caloric needs. We still lock. He needs it and wants that control. But I never thought that he would understand calories or want to lose weight. We have been working on making good food choices for a long time - and at this point -it's all clicking for him. Not that food is not a constant struggle -or that given the opportunity, he would pass on sneaking food - but this is more than we hoped for," says Maria.

Maria's thoughts on PWS?

"Anything is possible until proven otherwise! Our children write their own stories and make their own destiny. We are just along for the ride, which has its ups and downs and level outs. But in the world of PWS, those ups are so much more glorious and special."

I asked these Moms what advice they would like to share with other parents,

"Life is not all doom and gloom for those with special needs,"says Donna.

"My wish for other parents - that they have hope," adds Maria.

Listening to these special mothers has helped me to quiet my fear.

Thanks to Rachel and Arey I am no longer afraid of the future.

I see them dancing through life happy, healthy and uneffected by the thoughts of others.

I see there is much to enjoy about life.


Many thanks to Arey, Rachel, Donna, Maria and their families for sharing their story with us!

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Tuesday, April 17, 2012

Plant Killer Pete

I love my husband with all of my heart.

But sometimes, I must admit, I do not understand the man.

Particularly his propensity to kill plants, not just any plants, mind you. We live in the country, so our house is surrounded by all kinds of growing trees and flora. But despite this plethora of prolific plants, my darling husband somehow manages to snuff out only the ones that are the most precious to me.

Let me explain.

When we first moved to the neighborhood, I purchased a variety of seedlings to adorn our barren front lawn. Things like lilacs, iris's and peony's, were lovingly planted and carefully marked throughout our yard. I made a point of showing my husband exactly where each plant resided, so that if he left them alone perhaps one day these seedlings would become beautiful bushes.

It wasn't long however, before Range Rover Rambo riding on this...



Mowed down almost all of this.......



Do you see these lovely Lilac bushes? There used to be three.....



Even this hardy shrub was shaved to the ground once or twice by my marauding mower man.



So, needless to say, my plant purchases discontinued. I figured, if I didn't buy any more plants, my darling husband couldn't kill any more of them.

This philosophy served me well...that is until this weekend.....

Here in New England it was a long weekend, with Monday being the holiday, Patriots Day. The weather was glorious, perfect for doing some yard work.

And so it was that Plant Killer Pete decided he was having wildflower withdrawals and chopped down my biggest, most beautiful wild black raspberry bush that I had been grooming for years.....that's right...years!

The beautiful bush resided here, behind the lattice work of our porch.

Notice the missing lattices?
 
The stump....



My husband's tool of choice you ask?

Why a chain saw of course!

I probably wouldn't have noticed for a while, if it wasn't for Weston, who ratted out his poor oblivious father.

"Hey Mom," he says, "I can not tell a lie, Dad just cut down your blackberry tree!"


Ahhhhhhhhhhhhhhh!

Friday, April 13, 2012

The Slap Bracelet, the Knuckle Technique and Stuttering

Many children diagnosed with Prader Willi Syndrome have trouble with stuttering.

My son Nicholas is one of them.

Over the years, we have noticed this issue come and go in severity. This winter, Nicholas's stuttering was at its worst. He knew what he wanted to say but had great difficulty getting the first few words out. This caused him much anxiety and frustration, which in turn increased this vicious circle of stuttering.

Nick's speech therapist told us that his stuttering and fluency issues were most likely related to his difficulties in motor planning.

So, she tried something brilliant...

This is a "slap bracelet".


It is a stiff plastic band. You take the band and "slap" your wrist with it. The band seems to magically grab and hold your wrist tightly.

Kind of like this......



So, our brilliant ST, took a plain green "slap" bracelet and colored a long line of black dots on it. She gave it to Nicholas, who of course loved snapping it on and off his wrist. When Nicholas had trouble speaking, he was instructed to point to a dot and slowly speak each word.

At first, I thought...no way!

But, believe it or not, for Nicholas.......it works.

For anyone interested, you can purchase a dozen of these slap bracelets, by clicking here.

The price is $14. You can place your own dots, stickers or holes to customize your own bracelet.

BTW, it has also been a great tool to use to occupy Nicholas's hands and prevent him from picking at his fingers! At least for now!

Of course, in true elementary school kid fashion, Nick quickly lost the important speech saving tool.

So, in true PWS super mom fashion.......I improvised.

When Nick started to stutter, I made a fist, and pointed to each knuckle. I then had him point to his own knuckles, and guess what.....so far........it works!!!!!



The slap bracelet and knuckle technique help Nicholas to concentrate on saying one single word at a time. These tools slow down his rate of speech and allow him to say each word individually and clearly. It takes longer for him to speak but the words and sentences are clear.

Weston, Pete, me and even his friends and teachers at school have begun to use this knuckle technique. When Nicholas starts to get stuck, we all pull out our fists.


Knuckle power to the rescue!
I can't think of a more peaceful use for fists, than to help a young boy to speak!

Sunday, April 8, 2012

The Easter Egg Thief

Many of you may recall our previous Easter?


When Muffy, our sly Beagle dog, hijacked Weston's entire basket of chocolate Easter eggs. Ingesting chocolate can be fatal to a dog so I had to rush her to the animal hospital where they kept her overnight for observation. After an anxious night and $1600.00 later.....our heisting hound came home shaved and tired. Click here to read the entire story.

In an effort to avoid another trip to the animal hospital, this year we were much more vigilant about hiding the Easter goods. This is very ironic since an insatiable appetite and strict food security measures are usually reserved for our youngest son, Nicholas who is diagnosed with Prader Willi Syndrome.

In our house, this Easter, it is Muffy, not Nicholas who requires our constant supervision.



Happy Easter to all our readers.
May your holiday be happy!
....and peaceful!


Tuesday, April 3, 2012

Happy Birthday Weston

A look at Weston through the years....





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Happy Birthday Dear Weston



The teenager...13 years old

Monday, April 2, 2012

Weston Takes on "The Claw"

For a child diagnosed with ADHD, the ability to wait patiently is synonymous with pulling teeth. It is physically painful.

So, things like "going out to eat" can be an extremely difficult experience for both a child and his family. Once in a while, however, we get brave and try it.

Yesterday, we visited Papa Gino's, a local pizzeria.

We ordered our food and sat at a large booth by the window.

Not surprisingly, Weston had trouble sitting still and suppressing his wiggly energy.

Accustomed to large crowds of families, with lots of wiggly children, Papa Gino's ingeniously installed one of these....

For those of you unfamiliar with this apparatus, it is called "The Claw"

As you can see from the photo, a large glass box is filled with rather cheap stuffed animals. Above these furry friends is a large metal claw that can be operated like a crane. You simply place your coins in the slot, and using the joystick, maneuver "the claw" over the desired toy. The crane drops down and squeezes the toy. The joy stick operator must now lift the claw up and swing it over to the left side of the glass box ensuring that the claw does not (for some unforeseen reason) drop the tantalizing teddy.

I do not know about you, but I have never seen anyone win one of these toys.

So, when my son Weston asked me if he could play this game, I hesitated before answering.

Hmm, I thought to myself, this is a good opportunity for him to expel some of that restless energy before we sit down to eat. On the other hand, how much money do I want to waste? Like I said, I have never seen anyone master the art of operating the testy crane inside this money gobbling monster.

"Weston, I have never seen anyone win one of these games."

But after several,

"Awww come on Mom, pleeeeease?"

I reluctantly agreed.

I gave Weston a handful of change and accompanied him over to the tempting machine.

A workman waiting by the drink fountain smiled at the sight of the "toystruck" tot testing his luck.

The elderly woman picking up her pizza scowled at me, asserting her disapproval of my poor parenting decision.

The young boy working behind the counter stopped what he was doing to watch Weston play.

Now, there are several things that boys diagnosed with ADHD are very good at.......one of them is video games. When interested, children diagnosed with ADHD can hyperfocus. This is a very focused state of mind. In this state, they can easily ignore any superfluous noises or distractions. Intense focus then ensues enabling them to concentrate on an incredible amount of variables simultaneously. It is this hyperfocus state that enables boys diagnosed with ADHD  to master the art of "the joy stick".

Like a cowboy holding the reins of a runaway stallion, Weston expertly grabs the handle. He opens his stance, distributing his weight evenly over his feet, he relaxes his shoulders, and places his tongue strategically in the left corner of his mouth. He begins to hum.

"Hmmmmmmmmmmmmmmmm" he murmurs using the calming sound to help him to concentrate.

He maneuvers the claw carefully over the largest toy.

"Kerplunk"

The claw crashes down on a fluffy blue teddy.

Slowly he starts to raise the claw.

"You can do it son," the workman waiting by the fountain says to Weston.

The fluffy blue teddy begins to rise.

"Way to go Dude," says the teen behind the counter.

The elderly woman continues to frown.

"Mom, I'm doing it!" Weston shouts.

I am reluctant to celebrate since I have seen the spastic claw disappoint many an anxious patron.

The claw swings wildly.

I am sure the cheap toy is going to drop.

Everyone is starting to cheer as my masterful son, still humming loudly, maneuvers the testy beast with expert precision. The fluffy blue teddy flies haphazardly over to the left and plunks precisely into the winners slot.

"Yeah!" Weston shouts with pride and pumps his fist into the air.

"Woohoo," the workman whistles.

"You did it Dude" says the teen behind the counter, even the disapproving woman starts to smile and cheer.

My young son has caused quite a ruckus in our local Papa Gino's pizzeria as many folks stop eating and congratulate Weston.

He is smiling and for the first time in all of our "out to eat" experiences, Weston is successful.

He expelled some restless energy, won a surprisingly cool furry toy and somehow managed to delight an entire restaurant full of people.

It is this experience at Papa Gino's that helps me to realize the importance of finding the right outlets for Weston. By focusing that restless energy in more positive areas, it can have some surprising results.....for everyone!

Way to go......Weston!