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.


Steve said...

Stop being so good.

No, wait -- please continue!

Blaize said...

She just stole my heart with that one, too.