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.

Friday, September 12, 2014

A Much Better Version of the Lisa Train

With two rather extreme hiking expeditions under his belt, Nicholas decided it was time for the Peters' family to slow down our vacation pace and accommodate him for a change. He asked if we could take a ride on the Conway Scenic Railroad.

As a family, we often move too fast, our activities too extreme, for our slow-moving bear. In fact, apart from opening and closing the two garage doors at our rental home and lighting the gas fireplace in the living room, it was the only thing he asked to do during our entire vacation experience.

How could we refuse?

What is it about boys and trains? Both of my children enjoy this leisurely scenic activity. In fact, even the solemn Pete was excited to ride on the old fashioned choo-choo.

Having spent much of my time this year on the chaotic Lisa Train, this mild mannered and slow moving version was a much-welcomed alternative for me.

The folks at the North Conway Scenic Railroad in New Hampshire have revised several routes from the old Boston and Maine Railroad. Vacationers have a choice of three rides. There is a short trip to Conway, a longer one to Bartlett and a very long 5 hour trip to Crawford Notch which includes dining service.

Knowing Nick's unpredictable nature, we chose the two hour trip to Bartlett, pushing our luck just a bit. Pete and I both would have preferred the ride to Crawford Notch, a breathtaking adventure with lots of steep ravines and cascading brooks. But as parents of a child diagnosed with special needs our lives are not our own.

We arrive at the train station early in the morning. Built in 1874, this old fashioned depot has the look and feel of long ago. There is a large gift shop and several old photographs hanging on the walls. The floor boards creek as we make our way to the ticket window.

We purchase our tickets and wait out front for our train to arrive.

Nicholas studies his map of North Conway
and yes that's Pete smiling
So far, there is no sign of our motorized maiden.
Nick remembers to bring his trusty headphones
and places them over his ears.
Not a moment too soon as our loud locomotive begins to get...
and closer
until finally the railway men begin to appear
and clamor out of this red and green beauty
 carefully placing wooden steps under the passenger exit ways
Pete and Nicholas climb on board and take their place in one of the open-air cars
Weston decides to sit a safe distance away from his embarrassing family.
Unfortunately however, his annoying mother finds him
sending him into an indisputable form of teen trauma.
If you have a teenager, perhaps you are familiar with this state of mind?
Our journey begins and it isn't long before the wiggly boy begins to enjoy himself.
Of course, I try to spare my self conscious son from further humiliation
by refraining from front facing photos. I take my pictures from afar.
We pass over the Saco River

Nicholas, on the other hand, is happy and inspired
unashamed of his embarrassing mother, at least for now.
The train ride rolls over another river
This one is the Ellis.
We pass several family campgrounds.
A railroad man provides us with commentary over a loud speaker
alerting passengers to the identity of each of our passing surroundings.
Pete is unusually mesmerized by the sights, sounds and movement of this interesting ride
And Nick?
Well let's just say, for him this was a much more enjoyable mode of transportation for viewing Mother Nature
His smile says it all.

Wednesday, September 10, 2014

Pillow Talk

There is never a dull moment when you live with a child diagnosed with PWS.

In fact sometimes, it can be downright funny.

"Perseveration" is another word I learned thanks to Nicholas.

This is a constant repetition of thought, speech or action. It's like taking OCD and kicking it up a notch, a result of the malfunctioning hypothalamus in the brain. This repetition, seems at least to me, to be a kind of security blanket for Nicholas. It is a high fence he uses to calm down when his anxiety starts to escalate. He also uses it as a tool to combat boredom.

Our story begins in our living room where Nicholas enjoys spending much of his time, especially since it is the location of two of his most favorite things in the world. This:

and this......

 But even these soothing sight and sound devices loose their appeal after awhile...especially when it is four in the morning and you are the only one awake in the house.

Early morning rising is another symptom of PWS. Circadian rhythm or the sleep/wake cycle is also controlled by the hypothalamus and disturbed in individuals diagnosed with PWS.....amazing what this small portion of the brain controls isn't it?

As a result, Nick's sleep schedule is out-of-whack. He will often fall fast asleep by 7 pm only to awaken at about 3:30 - 4:00 each morning. (I think he is also roused out of his sleep by hunger and uncontrollable thoughts of food and breakfast).

Now, recently the Peters' family purchased some new living room furniture. With it came some nice accessories, specifically these lovely pillow....

Nice, right?

Well unfortunately, these plump, puffy pillows are filled with feathers, lots and lots of feathers. Feathers with ends like needles. These sharp, needle-like ends have a habit of sticking out of the fabric becoming an irresistible target for a perseverating boy hell bent on relieving boredom.

So, perhaps I should not be surprised to wake up in the morning only to see my living room looking more like the floor of a bustling hen house?

Reminding me of an episode of Road Runner with Wile E Coyote in hot pursuit of his favorite prey.

Of course, Nick's headphones are a dead give-away as to the exact identity of this mysterious feather fiend of the house.

But in true Nicholas fashion, when I confront him gently about what appears to be a puffy pillow massacre on the floor of my living room, he promptly blames it on his favorite fall guy..........Mok.

A perfect companion for these kind of episodes.
To read more about this invisible rascal and now puffy pillow pilferer, click here.

Friday, September 5, 2014

Gorges, Notches, and State Parks

With our first hike out of the way, and Nicholas feeling better about our new outdoor adventures, we decide to try again, this time hiking the Flume Gorge located in Franconia Notch State Park.

You may remember Franconia Notch from our drives through it on the way to the Mount Washington Hotel.

Having a sensory sensitive son, we have learned from past experience and arrive at the Flume as it opens, hoping to avoid the large, summertime crowds.

It is a good decision. The parking lot is empty as we enter the deserted Visitor Center.

Our journey begins much like our first with Weston blazing ahead of the gang
 this time choosing to hold a trusty stick as his leadership baton.

Once again he serves as talkative tour guide.
First stop is in front of a massive boulder moved by glaciers that carved this interesting environment.
The trail slopes gently upward to Table Rock.
Table Rock is a large flat slab of rock in the middle of the brook we are following.
The mountain water slides easily and almost invisibly over this massive surface.
A better view.
Perhaps not surprisingly, Nick's anxiety begins to build slightly.
But the brave lad decides to tough it out and continue.
With a little help from Dad.
The trail continues upward.
We are now at the top of Table Rock.
The sign warns folks to stay off the rock.
Although it looks safe and serene,
the water is actually moving very, very quickly.
The rocks are slippery.
Also important to note... at this point it is quiet.
The water is moving fast but noiselessly.
Weston and his trusty stick continue on.
Up ahead is a series of walkways and staircases.
The sound of water moving more quickly begins to build.
Large rock walls begin to spring out of the ground.
First on one side.

And then on the other.
Nick is concerned but carries on with much bravery
The trail becomes a series of wooden walkways
that head into a massive stone hallway.
 Out of this rock corridor comes the sound of a powerful waterfall.
The rock walls amplify the sound of falling water.
Still the brave Nicholas holds it together
with help from his supportive older brother
who is now holding back from his brisk pace so he can help support Nick.
Nicholas is holding his SpongeBob lunchbox.
One of a series of items we use to support him through difficult transitions.
He is also holding a stuffed animal that we spent way too much money on
in the visitor gift shop. Oy.
We continue to move ahead.
If you notice there is not another soul in sight.
This is a very unusual occurrence for the Flume.
In another hour this walkway will be full of visitors.
I am thankful for our early start.
The water is beginning to move more quickly.
We feel as if it is under our feet.
Nick puts on the most fake smile he can muster,
trying to hide his building anxiety.
A look back
from where we have just come.
Where we are going.
 Weston back at his usual post. 
The rock wall smells of moisture and metal and ancient times.
The walkway is wet and slippery.
The sound of falling water is now almost deafening.
The icy mountain water pounds over rock.
We feel the cold spray on our faces.
Poor Nick starts to freak out.
But thankfully there is no one around.
We proceed slowly and carefully.
I hold tightly to his hand and support his body as he climbs.
The stairway leads us over the roaring waters.
up, up, up
Nick requires all of our support now as we arrive at...
Avalanche Falls
An appropriate name since it seems to continue
and on
 and on
It is so loud we cannot hear each other speak.
But it doesn't matter since we are awed into silence
by the magnificence of the show
and the powerful sound of raging waters.
We hike up to the top of the waterfall.
Where we finally catch our breath.
Nick is noticeably relieved.
We are now on top of the gorge looking down where we have just hiked.
It is quiet.
The peace of this tranquil setting is soft, a startling contrast
from the hard sound of water crashing over stone. 
The trail heads gently downward through the forest.
Both of my children stop breathing as
 this motorized trail maintenance crew heads our way.
Who would have believed...!
Weston decided on the spot that this was the job for him.
Nick is wiped out by our hair raising adventure and needs a break.
We stop for a snack.
The woods is filled with interesting trees.
Weston is surprised how the branches of this tree look like arms,
as they catch the large tree
and stop it from falling.
Perhaps symbolic of our family struggles.
He decides that this is a good spot to dig for gold.
Remember doing this as a kid? 
He is certain he will find a large, golden nugget.
Up ahead are a series of smaller waterfalls and scenic vistas.
We follow the Pemigewasset River.

Until we reach Liberty Gorge.
Nick is much calmer and now enjoying the show.
Liberty Gorge empties into this spectacular view.
This is called The Pool.
It was formed 25,000 years ago.
The cliffs are 80 feet high.
The water in the basin 40 feet deep.
My photo does not do this incredible view justice.
If you look toward the top of this photo,
 you will see the wooden railings of the walkway where we are headed.
This gives you an idea of just how high up we are.
Notice also, there are no people, we are alone in the wilderness.
Nick enjoying the view.
Weston is also calmed by our surroundings.
We head past The Pool.

And toward a covered bridge.
We are overwhelmed by the view.
This is looking off the bridge toward The Pool.
View from the other side of the bridge.

Looking down...yikes.
We cross the bridge.
The wooden railings at the top of the photo
is where Nick was standing while he was viewing Liberty Gorge.

Water entering The Pool.

If you look at the top of this photo you will finally see some people.
This helps give you some perspective of how small they look 80 feet up.

There are a few more scenic vistas.

Until we finally arrive back here where we started.
This is the other side of the Glacial Boulder.
Doesn't Nick look small....and happy?
The scenic journey was exhilarating and rejuvenating, giving us all exactly what we needed. Nicholas found his courage, Weston his quiet. Pete was relieved to let go much of his work stress and me, I found my center, absorbing the natural and peaceful energy of this beautiful setting.
Oh yeah, and after the hike we headed out for lunch at a restaurant that just happened to have one of these.
We sat right in front of it.