Charlie's doing so many funny things these days, and learning constantly. He can point to his head, his ears, his nose (though he generally sticks his finger up it), etc. See the video below for evidence! His only words are Hi, which he says like crazy to strangers in the grocery store, and owl, which he's said several times when playing with his See-n-Say (but hasn't repeated lately). He knows every animal on the See-n-Say, and points to them when we say them aloud. He occasionally gets the goose and the goat confused, but they're both white and start with g, so we give him a break on that one. He signs "please" and "more" and "eat", and has lots of non-verbal cues down - we rarely fail to understand what he wants or needs. He babbles a ton, and has the best laugh!
Charlie is having some problems regulating his moods/temper, which the therapist attributes to sensory issues. He goes from happy to angry or upset very quickly, and when he's really mad, he will hit himself or try to scratch his own face. They tell us he won't really get to a point of truly hurting himself, but it's distressing to see your kid scratching at his own eyes, obviously. So we're re-introducing therapeutic brushing techniques, which we did for a short period of time when he first started OT. We use a surgical brush with soft plastic bristles and rub his arms, legs, and back for 5 minutes every 2 hours while he's awake. The concept is that the consistent stimulation helps the mind-brain-body self-organize. I would be thrilled to see him less inclined to blow up so easily, so I'm happy to do it if it might help him. Plus, it's painless and he doesn't even mind it much. As I was brushing his back and singing The Wheels on the Bus (one of his favorites), he leaned forward and wrapped his arms around my shoulders and put his head against my chest, which is basically one of my two favorite poses ever (the other involves him putting his head against my shoulder when he's tired - irresistable!). I remember seeing a tv movie when I was a teenager about a kid who had cystic fibrosis, and his mom would have to routinely beat on his back to try to break up the mucus in his lungs. Maybe my memory fails me, but I think she also sang The Wheels on the Bus in the movie. It made me think of the few days in the NICU when we were awaiting the results of his third CF test in the NICU.
Now the worst I have to deal with is listening to him scream during therapy, dealing with some speech and motor delays, and trying to help him better handle his sensory issues. Those things all pale in comparison to the sunny smile he gives me when I get him up in the morning, his giggle when we tickle him and wrestle with him, and the adorably mischievous look he gets on his face when he's about to do something he knows he shouldn't.
My friend Ellen, who I know from my crazy fun years in Charlotte, NC, has a 1 year old son who was diagnosed several months after he was born with a scary brain disorder that means her sweet baby has sometimes uncontrollable seizures on a regular basis. Clearly they're going through things they never imagined they'd have to, and dealing with some pretty terrifying circumstances, but she manages to remain inspiringly upbeat and positive in the face of really difficult times. She posted "Welcome to Holland", and I loved it and thought it was worth re-posting here. Life is what we make of it, no matter what!
Welcome to Holland
by Emily Perl Kingsley
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 plan 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 never would 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 many never be free to enjoy the very special, the very lovely things... about Holland.
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