Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 12, diagnosed with Prader-Willi Syndrome and Weston 15, 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.



Tuesday, December 9, 2014

Little White Houses for You and Me

One of the biggest hurdles I face as a parent of a child diagnosed with PWS is conquering my fear, particularly my fear of the future. There is not a day that goes by that I do not wonder in some way, what Nick's life will be like.

What will happen when I am not there to guide and protect him? How will he manage on his own? Will he be happy? Will there be a therapy available by then that will help him to manage his uncontrollable urge to eat so he may live on his own? Will he find love?

What I have noticed in my sensitive son is a unique ability to answer these specific questions and address the gnawing fear I hide. It is almost as if he has a magic mirror that looks directly into my soul. Without me saying a word, he understands the pain in my heart and addresses it directly.

Lately he has been telling me things like this:

"Mom will you come and visit me in my home when I am older?"

"Yes, of course I will Nicholas. I can't wait to come over for a visit. Where are you going to live?"

"I am going to live in a white house with two white garage doors and a silver front door. I am going to have a garage door opener that is grey. There will be a white key pad on the wall. I will have a red brick gas fireplace that will turn on with a clicker. Don't worry Mummy, I will let you click it on and off."

"That's great Nick are you going to have any children?"

"Yes, two."

"Girls or boys?"

"I am going to have two girls, Dora and Milly. I am going to cook you dinner when you come and visit me. And sometimes we will go out together. We are going to have so much fun."

With a contagious enthusiasm, Nick's provides many precise details of his vision of the future, so much so that I find myself actually believing him and wondering if perhaps this is his intention?

With the purity of his belief and the intensity of his optimism, once again it is my son Nicholas who teaches me of life, encouraging me to embrace tomorrow and see it for what it really is...just another opportunity to share love with others.

I believe in his dream.

Little white houses for you and me.

Monday, December 8, 2014

Jolly Old Saint Jack-o-Lantern

 

My son, Nicholas has a warm and loving heart. When he loves someone or something, it is with his entire state-of-being. Heart and soul, head and spirit, it is a love as deep as an ocean.

To say he becomes attached to these objects of his affection, is perhaps an understatement. When it is time to put away seasonal decorations, he has trouble letting go. This Christmas was no different, as the lovable lad refused to let me put away our light-up jack-o-lantern.

"But why Mummy? he asked, "Why do we need to put my best friend in the closet?" Large tears begin to swell in his eyes as the soft-hearted Nicholas fears for the winter welfare of his tiny, orange friend.

"Can't we keep him out, pleeeeeease? he begged.

Now, I must admit, at first, the perfectionist in me became horrified. My brain's initial response was confusion. Leftover Halloween decorations mixed in with Christmas trim? That's not how it's supposed to be. But as the parent of a child diagnosed with PWS, I have learned to let go of  that kind of thinking. I have learned to forget about "how things are supposed to be".

Living with PWS, has made me resilient. I have learned how to roll with things. I have learned how to accept the unacceptable and most importantly how to embrace the unusual.

"You know what Nicholas," I responded, "Why not!"

I found Weston's old Christmas hat and placed it on the grinning gourd.

"Watch this Nicholas, I told my sensitive son, "Nothing up my sleeve, presto!"

"Jolly Old Saint Jack-o-Lantern!"


Nicholas claps his hands and giggles with glee.

There is no trauma, drama or tantrum, there is only joy.

Poor Mr. Pumpkin is saved from eternal exile in the closet.

Nick's deep and loving spirit is saved from heartbreak.

And me?

I am saved from myself.

I guess it is only fitting that a house with a Menorah and a Christmas tree should also possess a Halloween pumpkin or two.


Sunday, December 7, 2014

Return of the Roaring, Red Firetrucks and the Red-Suited Man

If you are a long time reader of our blog, you may remember that every year Santa Claus makes a rather unusual appearance in our town.

Courtesy of our local fire department, jolly old Saint Nicholas fires up his sleigh for a one-time test drive throughout the local streets of our community. He is paraded through every road in town by a long line of roaring, red fire trucks. His magical sleigh is perched upon an antique fire truck that is adorned with thousands of twinkling lights.  Accompanying the Big Man in the Red Suit, is a jumbo inflatable Frosty-the-Snowman who rides in a row boat collecting toys from local citizens that will be donated to the Toys for Tots Program. The firemen blast their horns and screech their sirens waving to the hundreds of cheering residents along the way.

It is a loud and colorful procession lighting up the country streets in a fun and festive display. It is without a doubt, a dream come true for children and adults alike.

 It is impossible not to smile while watching Santa fire his way down the street in a festive flaming red fire truck. We look forward to this event every year. Even the stoic Pete can't help but smile at the sparkling spectacle.

Today, the very tall Weston takes his usual post as scout and lookout at the end of our long driveway.

He acts as a sentry
 listening for the sound of the wailing sirens.
waiting somewhat patiently in the cold, frigid air
as the rest of us wimps sit in the toasty warm car.
 
Nicholas is excited and happy.
He remembers to bring his trusty headphones
and his new toy to donate to Frosty.
This year he was a little apprehensive about relinquishing the goods.
But after a long discussion about children who do not receive presents at Christmas
the kind-hearted Nicholas quickly acquiesced
but not without asking
why on earth Santa would ever forget the children who need him most?...oy.
 
We waited for about 5 minutes,
long-enough for the wiggly Weston to require assistance from a transition tool,
his favorite item, the trusty stick
the same mainstay device you may recall,
from our summer hikes.
 
It isn't long before Weston sounds the alarm....the trucks are coming.
The rest of us join him on the cold and chilly corner.
You see.....Pete is actually smiling,
and willing to let me take his picture...!
 
The lights of the approaching vehicles are as bright as the setting sun.
When the trucks see us, they begin blasting their horns.
It is very LOUD
and Nick is happy he remembered to bring his headphones.
 
First one shiny red truck goes by
 
and then another
 
Until finally Frosty arrives with a "boat load" of toys
The boys place their toys on board
 
until at long last.....the glowing Santa Claus arrives on his sleigh
Christmas music is playing loudly as he waves to the boys
 
A few more trucks bring up the rear for Frosty and Santa
 
Until the last lighted truck passes us by
 blaring its horn in one long final good-bye
as if to say....
A Merry Christmas to all....and to all a good night. 

Thursday, December 4, 2014

A Menorah for Christmas

This week at school, Nicholas has been learning about the many different ways folks from different cultures celebrate the holiday season. So perhaps I should not have been surprised when he asked me,

"Mom, I want Santa to bring me a Menorah for Christmas."

FYI.......we are not Jewish.

(I write this post with the utmost respect for all religions, customs, cultures and different ways of life.)

If you recall, Nicholas is a lover of all things bright and shiny. He loves glowing candles, roaring fires and twinkling lights upon the tree. When you think about it, lighting a candle every night for eight days, is exactly his kind of celebration.

What is interesting to me, is what he asked next,

"I would like Santa to bring me the electric kind, so I can put it beside my bed."

So, after a lengthy discussion with Nicholas about the difference between Chanukah and Christmas, and the importance of both to each culture, he asked,

"But Mom, why can't we celebrate both?"

So, in honor of Nick's spirit to embrace and respect other points of view, Nicholas will be receiving a Menorah for Christmas. And perhaps a few other religious or cultural symbols..... depending on what Nick learns at school.


 Dear reader, may you enjoy this holiday season no matter what your culture, religion, color, disability, nationality or particular point-of-view.

In the true spirit of the season,

We are one.

Monday, December 1, 2014

Stowe-away Thanksgiving

For a family living with Prader Willi Syndrome, Thanksgiving can be a difficult holiday to navigate.

The abundance of food and the inability to access it, is stressful to an individual diagnosed with this condition. The sight, sound and smell of food cooking in the house, the buffet tables overflowing with steaming side dishes and the large display of decedent desserts are an overwhelming and unimaginable temptation for a person hardwired with an uncontrollable drive to eat.

The boisterous party-time atmosphere is filled with constant interruption and unavoidable distractions making it almost impossible for family members to provide the constant surveillance necessary to ensure strict food security.

This set-up creates a perfect opportunity for a dangerous or even deadly consequence to occur. So, in true Peters fashion, to avoid this unthinkable scenario, we go away for the holiday.

This year we tried something new.

We planned an adventure to the Green Mountains of Vermont and headed to Stowe Mountain Lodge, a resort  nestled at the base of Smuggler's Notch.

Our journey begins Wednesday morning with weather forecasters predicting a major nor'easter headed our way. Clothes, boots, coats and other vacation accoutrements are thrown hastily into suitcases and piled into our vehicle. We drop poor Muffy off at the local kennel and head up North as quickly as possible while the skies begin building with thick, dark, heavy clouds.

I-89 is the major thoroughfare to northern Vermont and as we merge onto this highway it appears that everyone has the same genius idea about leaving early.

The drive takes us through many quaint Vermont towns, nestled along fast-flowing riverbeds.




Each town seems to posses a white church and steeple.
 
It is isn't long before we approach this glorious vehicle traveling ahead of us.
Can you guess what it is?
 

A better look....
 
Yes, it"s a Coca Cola truck.
You may recall Nick's fascination with Coke trucks from some of my previous posts.
"COKE TRUCK, COKE TRUCK.....!" Nick hollers and we know it's going to be a good trip.
 
 There is also no shortage of shiny metal tanker trucks with two smoke stacks, keeping Nick thoroughly entertained.
 
After a long 3 hour drive,
we arrive in the mountain town of Stowe Vermont before the snow storm hits.
There are several restaurants and small shops.

 Farm land and ponies
 
 And of course.....the white church

Up ahead in the distance, we can see Smuggler's Notch Ski area, our final destination.
 
 Smuggler's Notch is a series of caves and mountain passes that were used during the days of Prohibition to smuggle beer and alcohol from Canadian sources. Now it is the fourth largest ski resort in the New England area.
 
We get closer and closer...until finally....
 

We arrive at our destination.
 
 We follow the shuttle bus to the lobby.
 
 Nick is the first to get out of the vehicle and stretch his legs.
 
 We enter the lobby
 
 where...if you notice in the far right hand corner of the room...
 
a fireplace....!
 
Nick decides on the spot, that this is the best vacation ever.
 
Inside the resort are several shops, selling obscenely-priced goods.
We pass them on our way to our room.
 
 But perhaps most impressively, we pass this...
 
 The heated indoor/outdoor pool and hot tub....
where we notice it is beginning to snow.
 
 We arrive at our room.
And quickly change into our bathing suits.
 
 As heavy, wet snow begins to fall.
Very few folks have arrived at the hotel.
We have the pool mostly to ourselves.
It is a perfect place to relieve the stress of a long drive.
 
(fyi....the pool is accessible from the indoors,
we walked through from the shallow end
where there was a narrow stretch of water that lead outside.)
 
Afterwards, Nick finds this....
 
 And I find this........
 
 It isn't long before the two of us are back in our room fast asleep.
 
On Thanksgiving morning we awake to this snow-covered scene.
 
 

 We eat Thanksgiving dinner in the lovely restaurant where the hostess was sure to sit us.....
 
 here, next to the fire, making someone very happy.
Nick eats his dinner in record time and I am happy we chose to eat in this kind of setting.
 
Our room did have a small kitchen.
 So once again the vacation food security procedure is implemented.
 
The wooden door beside the stove is a refrigerator/freezer.
We placed this heavy table and chairs in front of it.
So far, this works for Nick.
 
The next day we visit the snow covered town.
 
 Weston nearly faints when he's sees this vehicle parked at a nearby motel,
and asks why on earth we did not choose to stay here instead?
 
 We visit some obscenely-priced stores looking for t-shirts.
We find this lovely place.
Looks kinda like someone's home right?
 
 But as Nick and I enter the premise,
The store owner stops us at the door.
He tells us that Nicholas cannot enter since he is not 18.
I look around to see
not just obscene prices,
 but obscene posters and other various "explicit" publications.
I turn around quickly to leave.
Nick starts to cry.
He does not understand why he can't visit the store.
I must admit, I have trouble finding the appropriate words to explain it to him! Oy!
 
 We return to the hotel,
where we resign ourselves to pay the extra cash for another furry friend for Nick.
 
It is a lovely vacation for our family
filled with good fun, fond memories and of course, lots of fireplaces
 
 
 Heading home.
 
Thank you to all our readers for visiting and supporting us throughout the year.
Hope you all had a wonderful Thanksgiving.
If you are not from the US, hope you had a wonderful weekend.