Splendid Mayhem: A Seizure & More Biting

Welcome To Holland

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Tuesday, February 10, 2009

A Seizure & More Biting

Logen has increased his drooling lately. He's also had a few episodes of 'foamy' vomit after eating. Not more than an hour after talking with one of his therapists about not seeing any more seizure activity, guess who has a seizure?!?! Yea... go figure. I think we also need to do a more complete swallow study. He has a barium study scheduled for March, but I'm thinking we need to move it up. He sees the Ped Thursday for a well child check- at least now we have a few things to talk about. :(

Logen has started biting at school! What the poo?!?!?!?! He made many attempts to bite friends today and actually bit 2 teachers! I assure you, we are not taking any biting in our house lightly. I don't think our method of action (time-out and a talking to, then apologizing [by sign or otherwise]) is working... we are working on this.

I think both children biting has something to do with frustration over lack of communication. I think that Logen has so much to say, Parker does as well- and well- things just aren't being communicated.

2 comments:

SheilaFebruary 11, 2009 at 8:59 PM
Oh, Jess! Sorry to hear about the seizure. I hope you find answers soon! Bummer on the biting too. Lack of communication ability sure can cause frustration! Good luck!
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AnonymousFebruary 12, 2009 at 10:16 AM
My first thought with biting is the same as yours - frustration sourced in communication (lack of). Many children go through a biting stage - children that do not have a diagnosis. School personnel should know how to manage this, I think.

Is there any consideration for augmentative communication technology, in addition to signing?

Here is the blog of a speech therapist, fyi.

http://ifonlyihadsuperpowers.blogspot.com/.

Barbara
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