Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 14, diagnosed with Prader-Willi Syndrome and Weston 17, 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, November 1, 2015

The Great Pumpkin Fire

It's fall in New England.

fyi, I used to work here when I was a girl
 
 Nick's favorite time of year.

The colorful leaves and cold temperatures have alerted my humble, holiday-enthusiast to the undeniable arrival of the "Magic Season".

A time for apple picking and cold cider.

A time for warm sweaters and spooky decoration.

A time for carving pumpkins.


And lots of them.

But the fall activity he enjoys most is this!


There is nothing in this world more alluring to Nicholas than sitting in front of a rip-roaring fire.

But fall is also the time for Halloween and believe it or not, for individuals diagnosed with PWS, this can be a dangerous event.

Think about it.

For a child who is hard-wired to eat, what could be more difficult to negotiate safely than traveling door to door visiting neighbors whose sole purpose is to provide you with an unlimited amount of candy......lots and lots of sugary sweets?

It is a torturous experience for someone who can not control their hunger.


It is interesting to me how much of our culture revolves around food????

Anyway, when Nicholas was a baby, I sweated this out, wondering how on earth I would negotiate such a calorie-infused holiday while simultaneously providing some normalcy to my much-deserved son.

I am happy to report, that so far, for Nicholas, it hasn't been a problem.

Let me explain.

Children diagnosed with PWS often experience difficulty with their sleep schedules. Nicholas is no different. By 7 pm he's ready for bed. His body moves slowly, his legs are wobbly.  So, on Halloween night he has great difficulty negotiating the uneven terrain in the dark. Since 6-8 pm is the scheduled hours for trick-or-treating, Nick's endurance for door-to-door candy collecting is greatly reduced.

Yes, unlike the other children who dash wildly from house to house, the sensory sensitive Nicholas, prefers instead to wander slowly, stopping often to chat kindly with home owners. He asks them if they have garages and clickers or gas-powered fireplaces.

Yesterday was a chilly one here in New England. And although it was a starlit and crystal clear evening, candy coveters were clothed in cardigans and coats. Once again Nicholas was tired and struggling to keep up as we traveled quickly from house-to-house. He lingered at doorways searching, as usual, for talk-able topics.

That is until we arrived at one house in particular.
The white house on the corner.

There was a warm, inviting glow emanating from within. Brightly lit decorations waved from the leave-scattered lawn. The front door was open. On the threshold, a kind, friendly woman smiled warmly as she held out a bountiful bowl of colorful candy. As Nick reached toward the tantalizing treats, he stopped suddenly,

distracted by the distinct sound of a very large POP!

"Mummy, look!"  he shouted, and without taking any candy, ran toward the glorious glow of a very large fire.


Well, that was it for our weary-weener, he found the perfect spot, and much like the Charlie Brown character Linus, who was happy to stay behind in a pumpkin patch on Halloween eve, Nicholas too, hunkered down happy and alone, eager to enjoy the quiet of the most sincerest kind of solitude.

 
He did not lust for more candy but instead lingered in front of the roaring flames enjoying the sight, smell and sound of a hot, crackling fire.

He found his Great Pumpkin.

Redefining the meaning of the word, Halloween.

Reminding me once again, that he is not here to keep up with the activities of mindless others.

He follows his heart.

He stops to enjoy the simple things in life,

Knowing instinctively just how "to be"


Happy Halloween