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.




Friday, September 28, 2012

The Coveted Commencement of The Magic Season

It's September and back-to-school time here in New England. For most of us, this usually means a trip to Kmart for some running shoes and school supplies.

But for my son Nicholas, this fall month is far more significant than just a time for buying some notebooks and colored pencils. To him, September is the official kick-off to, The Magic Season.

What is The Magic Season you ask?

It is that time of year when you can officially begin to decorate the home with all things cozy and warm. It means that you can light candles and plug in things that glow. It is the official start to months and months of twinkling lights and holiday decor.

To Nicholas, however it means just one thing, happiness.

Yesterday, we drove by our local farm stand when suddenly I heard a scream from the back seat,


"MOM, LOOK.........PUMPKINS!"

Sure enough as we passed our local farm, rows and rows of bright orange pumpkins lined a long, wooden table.

"CAN WE GET ONE? CAN WE GET ONE?"

Typically buying a pumpkin in the middle of September doesn't pose a particular problem. The colder evening temperatures here in New England, help to preserve the freshness of the gourd-like, giant squash. Unfortunately for Mom however, Nicholas insists on carving it right away. He delights in quickly gutting the poor unsuspecting vegetable so he can place a lit candle directly in its belly. He will watch  his cheery little friend for hours, and will carry him wherever he goes.

But as you all know, the shelf-life of a carved pumpkin is two, maybe three days, tops, and then the once grinning gourd now becomes a rotting, smelling, moldy piece of pulp more suitable for the compost pile than the bedroom nightstand. The ever-tolerant Nicholas however, accepts his faithful friend as he is and disregards the decaying nature and God-awful smell that accompanies him.

Usually, I try to avoid passing a farm or visiting shopping malls until at least mid October, giving us only a few weeks to collect our gobs and gobs of grinning ghouls and goblins. But this time, however, I blew it, I failed to redirect my route and unknowingly tipped off my son too soon to the coveted commencement of The Magic Season.

"CAN WE, CAN WE MOM, CAN WE GET A PUMPKIN?" Nicholas asked excitedly.

 "I'll tell you what," I said, "You have a good day at school tomorrow and we will get one."

"OK!" he said absolutely positive that he would be triumphant in earning the iconic reward.

Sure enough the next day, Nicholas behaved beautifully in school. So, it was off to the farm we went in search of the perfect pumpkin pal. He chose a small somewhat oval little friend.

At home, he carefully drew a smiling face on the front of the pumpkin and had Daddy perform the delicate seed removal operation. Nicholas carefully placed one of his thousands of candles inside the orange squash and voila...

The Magic Season has officially begun!


 
   I wonder if anyone has invented a pumpkin embalming kit yet for parents of children with PWS?

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Sunday, September 16, 2012

Stop and Smell the Lemonade

The week before school started, my ready for a job son, Weston asked me if he could sell lemonade.

"Yeah!" echoed Nicholas, anxious to get in on any of Weston's summer action.

"Alright,"I said, "But this is your show. That means you need to do everything, including making the lemonade."

"OK Mom, I will!," Weston said excitedly as he buried his head in my freezer looking for the lemonade.

He grabbed my Tupperware pitcher, filled it with water and stirred the frozen glob of lemony goodness with a wooden spoon until it disappeared, coating the kitchen with large puddles of clear sticky syrup.

He found some poster board and crayons.

"Mom, how do you draw lemons?"

"Mom, where's the tape?"

"Do we have any cups?"

"Mom, where can I find a table to use?

"How am I going to carry all this stuff?"

After a million more questions and a frantic search for all the right "stuff" Weston and Nicholas were ready to set up camp.

 

It wasn't long before our neighbors Liam, Emma and their new dog Queen Elizabeth came to join the fun.

 Emma on the left. Nate, in the green.
Jen, in the purple, Mom to Emma and Liam
Liam in the black. Weston in the red. Nicholas with the backpack (of course!)

Nicholas quickly became enamored with the calming energy of the little rescue dog.



Weston was also sidetracked by the loving little lap pup.

 
 
Emma made sure the lemonade was tasty and cold.


We live in a small neighborhood but it wasn't long before a car finally came rolling down the road. The children sprang to their feet.

"LEMONADE!" They shouted jumping and shouting with glee.

Zzooommm, the car and occupant sped by with barely a  look.

And then another.....

and another.

"Don't worry," said Jen and I, someone will stop.

As if by magic, the woman who lives to our right, pulled out of her driveway.

She's definitely going to stop, I thought to myself. But like the others, she whizzed by the children without even a glance.

"Really? Our neighbor?" I asked Jen.

"I don't understand," she replied.

I felt disappointed and sad being raised by parents who embraced the following "always" philosophies:

Always hold the door for others.
Always say "bless you" when somebody sneezes.
And always, always, no matter what...stop to buy lemonade from kids in the neighborhood.

As I stood by the side of the street watching car after car pass us by, I couldn't help but wonder what has happened to our society? What has happened to common courtesy? Are we so absorbed with ourselves that we are too busy or too angry to stop and encourage a child? Have we forgotten the importance of making children (not just our own) feel good about themselves? Have we forgotten what it feels like to be a kid? Have we forgotten how to be kind?

Finally, a woman stopped, on her face was a large smile. She handed Weston her change and said,

"I always stop when I see a child selling lemonade."

A few others also stopped including a Dad in a pick-up truck and a Mom driving with her two teens.

They were a select few.

But despite the lack of thirsty customers, Liam, Emma, Weston and Nicholas enjoyed their time together. They pet Lizzie the dog, ran races and drank ice cold lemonade on a hot day. I enjoyed their spirited conversations and their ability to find happiness despite the many who forgot the importance of stopping to smell the lemonade and.....



making a child smile.

 
Thank you to Liam, Emma, Nate, Jen and Lizzie the dog for sharing our adventure.

We had fun with all of you!

Wednesday, September 12, 2012

A Born Salesman?

What I love most about my son, Weston, is you never know... just what he is going to say.

As we all sat eating around the dinner table, Weston suddenly announced,

"Boy, I sure wish a 13-year-old could work?"

"Why do you wish that?" I asked scratching my head in true clueless mother fashion.

"If I was working at something I liked, I would be so much happier than when I go to school." he answered.

As I thought about this for a moment, I was reminded of his favorite teacher of all time.....Mr. Chute.

Mr Chute is a tall, wiry man who is one of those rare individuals who embraces out-of-the-box thinking. He teaches his students in a fun yet educational manner. He personifies the meaning of the word, quirky and I am not surprised that Weston had the best school year of his life under the tutelage of Mr. Chute.

Anyway, Mr. Chute told me once, that my job as Weston's parent was simply to get him through school. He explained that not unlike himself, Weston was one of those children who would suffer in school but more than likely he would be super successful as he entered the real world.

I have never forgotten his words. In fact, lately, they have become my mantra.

"Just get him through school, just get him through school, just get him through school!"

As I thought about Mr. Chute's advice, I asked my thoughtful son, if he could have a job right now, what would it be?

Perhaps not surprisingly, he told me that he would really love to sell these:

 
He asked me, of course, if driving the car would be one of the responsibilities of selling these beauties?

"Yes, I imagine as a salesman you would need to understand all about this vehicle. I would think that driving and understanding the car would be important."

I suppose I shouldn't be surprised at Weston's driving obsession. In fact, I am partially to blame for it.

When Weston was 3-years-old, he loved matchbox cars and hot wheels. He collected boxes and boxes of the miniature sports vehicles. So, hubby and I decided one Christmas, to buy him one of these.


It was by far, the best money we ever spent. He drove, and drove and drove this plastic battery-operated monster. He drove through the yard. He drove on the driveway. He followed behind my husband when he cut the grass. In fact, we had to purchase an extra battery just so we could keep him driving all day long.

He got pretty good at it too, offering rides to Nicholas and neighborhood kids.

 
He could stop on a dime, maneuver three-point-turns and back-up on a straight line. Yes, even Mario Andretti himself would have been proud of the way my young son drove that imitation SUV.

He  drove his beloved jeep jalopy for years, only retiring the roughed-up roadster after the hard plastic tires had worn to a thin film and he could no longer fit in the driver's seat.

Weston loved to drive so much that hubby decided to bring him to a Nascar race where he met none other than...

Richard Petty

As I thought about Weston and driving and Nascar and Mr. Chute, I smiled.

A sharp picture of the honest and good-hearted Weston sprang to my mind. When I thought about it, Weston was designed to sell! His love of driving, his penchant for memorizing facts, his ability to negotiate his way out of a tight spot and his good-natured personality are all qualities that could help my sports-car-crazed son to become a very successful salesman. Heck, I think even I would be tempted to buy a Lamborghini from Weston.



The stress of worrying about Weston and his future suddenly loosened, at least for a moment.

I felt a glimmer of hope and and happiness as I realized that perhaps Mr. Chute was right after all.

Perhaps the world is just waiting for Weston!

 
Tell me, would you buy a new vehicle from this guy?
 
 

Tuesday, September 11, 2012

This September 11

On this September 11,
I find myself feeling a mixture of emotion.
Perhaps reflectng on the lessons I seek to understand in my own lifetime.
 
I grieve for the innocent loss of life.
 
I grieve for the horrifying effects of reckless hatred.
 
I pray that the lessons we learned on that fateful day are not of hate, revenge and the seeking of retribution.
 
But rather a learning that through tragedy and loss, we learn to live better together as human beings to embrace the gift of life and the power of the human spirit.
 
It is interesting to me that on a day that was meant to destroy us, instead it brought us all closer together.
 
In this spirit, I would like to remember Carol Flyzik, a 1979 graduate of our local high school. She is a reminder to me of just how far the long arms of hatred reach and the innocent lives that have been lost because of it. 
 
 
To read more about Carol, you may read my previous Sept 11 post here.
 
It is in this spirit of remembering Carol and all our loved ones,
 
that I look forward to rebuilding a positive tomorrow that seeks to learn the important lessons of mutual love, respect, tolerance and understanding.
 
 

 
I am hopeful for a brighter more loving tomorrow.
 
 
 

Wednesday, September 5, 2012

What Would They Be...

If I had to describe my children without using words........

WESTON
 



NICHOLAS
 
 

Sunday, September 2, 2012

What Would You Have Said to Yourself the Day Your Child was Diagnosed?

Dear Readers,

One of my favorite bloggers, asked mothers and fathers of children diagnosed with special needs what they might have told themselves on the day of their child's diagnosis.

This beautiful video is a montage of these parents and their heart warming advice to others.

This inspiring piece was produced by my dear friend Elizabeth. I have never met her, but she is one of many special individuals whom I have befriended thanks to the world of blogging. Without these supportive parents (you too Debbi) and their blogs, I would be lost. They have provided much love, support and guidance to me and I am forever grateful to them!

Be sure to have a tissue handy when you view this video, and be sure to visit Elizabeth and her beautiful blog. She is a poet, a voracious reader, a spirited conversationalist, a fierce advocate, a sage, and a wonderful mother to 3 beautiful children.



What would you say?

To visit Elizabeth's blog please click here (a moon worn as if it had been a shell)

P.S. If you share this video please give credit to Elizabeth and reference her blog.
THANK YOU!