Tuesday, July 27, 2010

Into The Woods

Last week I dragged the Boy out of his summer stupor, threw a childsized backpack on him, slathered him with sunscreen and repellent, and headed for the hills. It was his first backpacking trip. I had chosen a relatively easy hike for his first time - a short 3 miles in and with only minor elevation change - 800 feet or so. The way in was unusual as it was almost all downhill. I figured that would be easier and the way home would then be uphill leaving him little choice but to trek on.
We weren't 100 yards down the trail when he began to complain about how hard it was. His feet hurt. It was hot. His pack was uncomfortable, despite the fact that it only carried his sleeping bag and clothes. I offered to carry his pack for a while. He agreed and was happier. After a quarter mile I offered it back to him. He once again carried it, but soon enough it was "too heavy." This was our long hike in. Back and forth his pack was traded until I finally gave up and just hauled it. So much for that idea.

It took 3 hours to make those 3 miles.

I picked a site close to the stream, both for the ease of water hauling and to keep him occupied with water play. He wandered and helped as best he could as I set up the tent and kitchen. Eventually as the mid-afternoon heat set upon us we slipped into swimsuits and frolicked. He could not have been closer to his ideal of heaven. Rocks were skimmed. Dams were built and destroyed. Objects were tested for their floatiness ("Rocks don't float! No really daddy, they don't"). He acquired all manner of filth that could not be washed away by stream or scrub or wet ones. But through all that dirt he beamed.
As dusk set in and dinner was served he chatted incessantly about how amazing it all was. He looked for bears and chipmunks and birds and other wildlife (but mostly bears.) He kept wondering when the stars would finally come out. He laughed... a lot.

I gave him the camera and re-trained him in its use. He snapped without reservation - went all Galen Rowell on me.

He loved the tent - its open air feel and the sense of adventure it promised.
As night fell so did the clouds and the stars he so longed to see remained hidden. He decided to sleep instead. Some time in the middle of the night, he awoke. He looked up through the mosquito netting of the tent and the clouds had cleared. "Daddy! Stars!"

That was sadly not the only time he awakened me. He tossed and turned, flailing me every so often with an errant arm or elbow. I slept very little.

In the morning, after a hearty breakfast of pancakes (and a doe and fawn sighting 10 feet from our tent - "Daddyyyyyyy! Deeeeers!") we wandered around a bit and then broke camp. I rearranged his pack, putting his sleeping bag into my pack, but told him that I expected him to carry his pack out. It was all uphill and if he wanted to go backpacking he was responsible for carrying something. He said he understood.

The little dude trekked. Not one word of complaint. No request to have me carry his pack. He asked if we could rest often, but he never whined. He had changed in that one day. I was pretty proud of him. By the time we made it to the car it was 92 degrees and sweat had soaked us both. Still, he was chipper - weary, but chipper.

My little boy had grown up a lot over the course of 6 long miles. I was beaming.
Of course, then he got carsick on the winding ride home and threw up all over the backseat, but what the hell... he's only five.

Tuesday, July 6, 2010


The Girl, in spite of all her therapy, continues her stumbling ways. She continues to be difficult to understand. She continues to be plagued by the same things she has endured all along. She is getting better... slowly... incrementally.

I schlep her to speech therapy twice a week and to physical therapy twice a week and to occupational therapy once a week. She works with me or my wife at home on various and sundry specifics and I have gotten quite good at turning the most mundane of tasks into genuine workouts for her. It's tiring for her... and me.

A couple of weeks ago I was forced to do some more research into her specific condition - dyspraxia - while dealing with an insurance issue. I found myself reading more than my fair share of non-layman type documents that left me glassy-eyed, but more deeply informed. One of the more interesting items I culled from that numbing experience was that many researchers in the field are arguing that dyspraxia be shifted into the spectrum of cerebral palsey as a form of that disorder with more mildly manifesting symptoms and usually lacking tremors or spasms. It makes sense.

Dyspraxia can be defined as:
A non-contagious, non-progressive, life-long neuromuscular disorder centered in the cerebellum.

Cerebral palsey can be defined as (you guessed it):
A non-contagious, non-progressive, life-long neuromuscular disorder centered in the cerebellum.

In any case, the treatment she receives would be the same no matter what it's called or the spectrum it is placed within. The insurance company tried to tell me that what she had is categorized as a "Learning Disability" which therefore limited their monetary responsibility in any given year. I informed them that they were wrong. It is in fact a physical disability that often has learning disabilities as comorbidities. As I explained to them, it's as if they saw Christopher Reeve in his wheelchair, breathing with the aid of a ventilator, and defined his problem as a "resperatory one." He was paralyzed in fact, and his need for a ventilator was a comorbidity of that paralysis.

Plenty of people have dyspraxia and do not suffer speech difficulties. The actor Daniel Radcliffe (Harry Potter) announced recently that he has dyspraxia, though he was quick to point out that his symptoms were very mild and in no way were representative of the much more severe symptoms experienced by the majority of those with dyspraxia. Nonetheless, at the age of 20, and even with the relative mild nature of his condition, Mr. Radcliffe still can not tie his own shoes... at 20!

This is a physical disability that will profoundly affect the Girl for the rest of her life. We are only now accepting the idea ourselves - that she may not drive a car, that her speech may be difficult to understand throughout her life, that injuries will be all too common, that there may be psychological issues resulting from the actual dysfunction or simply from the everyday struggles she will endure.

It's her lot in life.

And how does she take all this at not quite 3 and a half years of age?

She fell the other day for the millionth time in a day. I asked, as I always do, if she was ok. She said she was. And then she added this little gem which stole my heart:

"I just a big raindrop. I always fall."

Perhaps it is the poet in her that will be her salvation.