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.




Wednesday, September 3, 2014

A Waterfall, a Meltdown, a Moose and a Mirror

I am the parent of two children with vastly different personalities. Because of this, it can be difficult to find a vacation activity that is "do-able" and more importantly.......enjoyable to both of them.

So, in an effort to appease my extreme children, while simultaneously soothing their varying levels of anxiety, I devoted this year's summer vacation to returning to the quiet solitude and fragrant forests of the White Mountains of New Hampshire. Yes, Mother Nature could surely help us all to find our inner peace and center our spirits, no matter who we are as individuals.

We decide to ease Nick back into the wilderness world by using a slow approach. We begin our first hike on the Thompson Waterfall Trail, a short, easy trek that begins at the base of Wildcat Mountain.

The outdoor adventure commences with Weston, the fire bolt, taking up his usual position as talkative tour guide and family expediter.

 
It is almost as if he is shot from a cannon as he sprints up the steps and into the awaiting forest.


"Come on you guys..!" he shouts as he looks back impatiently at the painfully slow, lagging and loitering lot.

The slow-moving Nicholas takes a more apprehensive approach as we begin our first hike. The heavily wooded forest is a much different environment from our artificial at-home surroundings. It is filled with unusual colors, sounds and smells. It takes him awhile to adjust to the lack of walls and unprotected open spaces.

This new setting has made me acutely aware of the different approaches my two children use to relate to the world.


As for me, I am the observer, the invisible one.
 
I fall back alone, bringing up the rear, stopping often to enjoy the muted brown and vivid green color of the forest. The trail follows a fast-moving brook coming down from the mountain top. I enjoy listening to the sound of the icy water hurrying its way over a collection of granite rock and fallen trees. I look, listen, smell and observe.


I stop to take photographs.
 
Pete is ever the introvert, passively surveying the scenery, taking time to ponder the experience before reacting to any of it. He is stoic and unaffected. Of course, there is also his ongoing distaste of my annoying picture taking antics.
 
 
Can you guess who Weston takes after?
 
 
As we continue on the trail, it begins to present us with some challenges.
 
 
There are wooden planks laid over mud flats
 
 
And large boulders strategically-placed over water  
 
Nicholas begins to cry. He is overwhelmed and frightened. His issues related to low muscle tone and poor balance control make it difficult for him to negotiate this hostile terrain. But we are too far to turn back. We decide to push him a little to accept this new challenge and confront his fears.
 
 
Daddy tries to comfort the brave little hiker as he continues moving forward, muffling his cries and trying very hard to be brave. At last, we arrive at the waterfall. It is a breathtaking sight and we are all quieted by its majesty and the powerful sound of water breaking over rock.
 
 
As I have mentioned in previous posts, the outdoors serves as a calming mechanism for Weston. He is unusually subdued by this breath-taking spot and happily agrees to have his picture taken.
 
 
I thank Mother Nature for her intervention...as this photograph has quickly become one of my favorites.

We rest awhile at what seems to be Nature's version of a holy sanctuary. Nick's agitation begins to reside. He is soothed by the incessant, meditative pounding of the water over the falls. I decide to take full advantage of Nature's calming power over my entire family.....and manage to persuade even the camera-defiant Pete to smile.
 
  
It isn't long before troops of hikers begin to arrive at our quiet spot. The silence is broken and our magic sanctuary begins to loose its appeal. We head back toward the base of Wildcat Mountain. Knowing we are returning to base, Nick is no longer anxious. He is familiar now with the landscape and has an easier time climbing over rocks and fallen trees.
 
I am able to linger longer on the trail and take more time to appreciate the beauty that surrounds us.
 
 
I snap photos and begin thinking about Nick's anxiety issues.
I think about how this symptom of PWS is beginning to effect the quality of his life. I think about how he was unable to enjoy his graduation ceremony and now this nature walk. But as I'm thinking this tiny mushroom catches my eye.
 
 
I am struck by how small and insignificant it is within the mighty forest. And yet despite its small stature, the boldness of its color seems to serve as a powerful identifier. It stands out, apart and alone in the world but yet strangely defiant and powerful, willing simply to be.
 
 
This tiny sprout also catches my eye, seemingly small and delicate yet persistent in its desire to grow among the towering pines.
 
I am lost in my thoughts of the duality of life, my extreme children and standing out in a crowd, when I hear a loud commotion up ahead. Pete and Weston are shouting. They are entering the large open space at the base of Wildcat Mountain. Out from this open area and heading directly toward the trail head is a large four-legged animal running at a full gallop.
 
As first, it appears to be a deer, with rounded ears and long neck. As I look closer, I see that it is not a deer, but instead, a large female moose. She is running quickly past the bewildered Pete and Weston and headed directly toward me and Nick.  Instinctively, I push Nicholas off the path and safely into the woods. I watch the oncoming mammal closely and try to get a sense of her demeanor. She is not in an attack mode. And yet she is not fearful or distracted from her desire to continue down the path. She runs clumsily and yet majestically toward me. She is not charging at me but instead seems to be unapologetic in her decision to run closely past me.
 
(not my photo...but this is what she looked like)
 
I am so awed by the sight of this impressive creature I cannot move. I am holding my camera in my hands but neglect to take her picture. I resist a strong urge to reach out my hand and stroke her reddish fur as she passes. I am spellbound and speechless.
 
Intuitively, I realize this encounter is a once-in-a-lifetime experience. Save from a direct collision, I could not be any closer to this elusive animal.
 
For those of you longtime readers of my blog, you may remember my belief that unusual animal encounters are no accident but rather Nature's way of delivering us a message.
 
This creature's fierce resolve yet deliberate avoidance of violent attack made me think of my plight as a mother of a child diagnosed with special needs.
 
This moose was mighty in her contradictory nature. She was fierce but gentle, clumsy yet graceful. Gangly yet elegant. She was unstoppable and doggedly determined. No one dared to step in her way yet she was also undeniably feminine, soft and yielding.
 
A moose has a fierce spirit that can be overwhelmingly powerful making outsiders feel inadequate, insecure and at times even immobile. In the moose's presence I felt like a child. Suddenly I thought about Nick's graduation ceremony and wondered.....if perhaps, as a special needs family we are a lot like this moose. Perhaps this is the reason we feel like we are surrounded by child-like spirits who are obnoxiously curious, starring, like we were at the moose, with mouths hanging open.
 
Perhaps it is our ability to be unashamed and present. Or our resilience and dogged determination to continue down a difficult life's path fearless and unaffected.
 
The fierce, spirited presence of this beautiful moose seemed to serve as our own symbolic mirror sent directly from our ever present interactions with the natural world and Mother Nature.