Wednesday, October 24, 2012

Show The World The Amazing You

I am attempting to ignore the fact that my children are awake one morning and am cozily wrapped up to my chin in blankets. Then, the inevitable happens. Little feet come running down the hallway and into my room. Being the mom, I can already tell by the sound that it is Ben coming to visit. He comes up to my face and looks at me with a big grin. I peek through one eye and smile back.

"Buenos dias Mom!" he yells.

"Good morning, Ben. I'm tired."

He climbs up on my bed, crawling over me in the process and burrows himself in the blankets next to me.

Sighing, he says, "My feet are cold. I have an idea! I'll walk on your back! That will make them warmer!"

Quickly, he pulls the covers back, climbs on and proceeds to walk up and down on my back in an attempt to warm his feet. I am laughing too hard to mind the freezing cold toes. He's laughing too. He knows that he is being silly.

"Goof ball! Get off my back. Your toes are COLD!" I squirm, trying to make him lose his balance and fall on the bed. He holds on though and I am quite impressed at how much his balance seems to be improving lately.

"Mom! I'm now going to show you a MAGIC TRICK!" He stands up tall on my back and pretends that he is losing his balance. "Whoa! Whoa!! Whoa!!!" He jumps off my back onto the bed and then yells, "Ta da!! That's a great magic trick, huh?"

"Very nice Ben." I try to sound truly pleased. I pull the covers back on and try to convince him to cuddle for just a few more minutes. He obliges, somewhat, and crawls in next to me. However, as I close my eyes and try to drift back to sleep, I feel his eyes peering at me. I am guessing that I will be up very soon.

About a minute passes. Then I hear a whisper, "Mom? Are you awake?" Getting louder and closer to my face, "Mom?? MOOOOO-OOOOM. Wake up mom! I'm getting HUNGRY!"

Ben is silly. Ben is imaginitive. Ben is stubborn. Ben is smart. Ben loves to play. Ben is cuddly. Ben is loyal. Ben is musical. Ben is curious.
Ben being silly with his sister.
Ben gets super excited when he sees someone he knows. He loves to pick Andrew up from school and looks through the glass doors excitedly until he sees him. When Andrew gets wheeled out, he immediately says, "Hi Andrew!" and gives him a big hug.

Just about every day, Ben assigns us all imaginary character names that we are supposed to go by. Today, I happen to be Princess Jasmine. Yesterday, I was Pirate Princess. (I see a trend). If I forget that he is Abu, he stops me and says, "No, mom. I'm not Benjamin. I'm Abu."

Ben loves to play with his sister's dollhouse (don't tell him I told you). He also loves to bring his beloved trucks into the action. There is often a character falling off a roof that needs to be taken to the hospital or a fire that needs to be put out. Sometimes, there is even some construction that needs to be done. And, he LOVES to play tea party with Kate. Of course, he adds a little boy action with pretend vomiting or someone pretend choking who needs an ambulance.

Ben pretending that one dinosaur is eating another.
"The carnivore EATS the herbivore!!"
Just this morning, Ben put on a gigantic pink witch hat and walked around yelling, "BOO!" at everyone he saw. "I'm a SCARY witch! BOO!!!"

If Ben likes you, he will give you a big hug. It's not one of those "sure, I'll oblige this crazy lady and give her a half hug" type hugs. It's a full body, leaning, squeeze with a smile on his face. He truly loves to hug.

Ben plays the piano. He can name any note played without him looking at the keys. He can play just about anything by ear and can move songs from key to key on his own. He "composes" regularly and has about 3 songs that he has made up on his own. They aren't "Twinkle Twinkle" type songs either. They have chords and span the entire piano in length. He likes the way chords sound. Each song goes with a mood he is in. When I asked him what one of the more melancholy songs was about, he immediately said, "It's about how I am afraid of the dark." Not really expecting an answer at all from him, I stood there dumbfounded.

Ben asks questions about things that he doesn't understand. He notices that the clouds turn pink during a sunset. He sees the trail behind the jet flying through the sky. He can tell you what every rescue truck does and what it is called. He has a mental list of all of the Lego City sets and the category that they fit into. He loves to learn new vocabulary words and immediately puts them into his regular speech. He knows where at least 4 states are on a U.S. map and where a few countries and continents are on a world map. He can read to his sister the book Curious George. He knows about 50 spanish words.

Ben talking to Daddy about the Mickey ferris wheel.
He noticed it lights up at night.
So, why is it that nobody sees this child?

When we go in public, Ben changes. He becomes quiet and withdrawn. He will say hi if he knows you, but if he doesn't, he will only say hi when prompted. Even if he does know you, he is sometimes so distracted that he won't get beyond the greeting part of the conversation.

I never really understood that other people didn't see the real Ben until I saw a copy of a report that his neurologist sent to his pediatrician. In it were the words, "No spontaneous speech. Parroting." My heart dropped as I stared at those words. No spontaneous speech? Surely they can't be talking about Ben. Sure, he's definitely speech delayed and his vocabulary is small. Sure, he talks about the same things a lot. But, NO spontaneous speech?

Then I thought about the meeting with the neurologist. We walked in and Ben ignored her completely. She said, "Hi Ben!" and he ignored her. So I said, "Ben, she said hi. What do you need to say." He replied with, "Hi." and then proceeded to do whatever it was he was doing. I am not even sure he said another word during the appointment. I explained to the neurologist all about Ben, but I am pretty sure she thought I was exaggerating. After all, she saw a little boy who went off into the examining room and played with whatever he could find without hardly any interaction from the other people in the room. I get it. She didn't see Ben.... at least not the Ben that I know.

It saddens me that very few people get to meet this funny, silly little boy. It saddens me that people automatically judge him and don't try to get to know him. But, I get it.

So, for now, we are working on him being himself wherever he is. I am trying to push him slightly out of his comfort zone and interact more often outside of the house. We have him in social skills training and work on it every day. Eventually, I hope that he will be able to do these things without my direction. My ultimate goal and prayer for him is that he can gain enough social skills and confidence to show the world how amazing he is.

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