Tuesday, February 21, 2012

Bumper bowling with "Friends!"

Thanks to Theo's awesome grade school Circle of Friends, my littles got to go bowling last Friday morning. Theo, Zhen, Ralph, Ruby and Jordan all got to bowl and enjoy a pizza lunch, each with a young adult helper.

Zhen was more than a little overwhelmed and overstimulated in this noisey place. His poor helper had her hands full! Theo was a rock star as usual. Ruby had a giggly time and Jordan was happy to have the morning off of school yet again.

But Ralph. Ralph OWNED the place!

Can you see the swagger in his step? Yeah!
WOW! I love the ball return too. Amazing!
Ready to go again!
Thank you, Circle of Friends!! If you have a chapter of Circle of Friends at your school, won't you lend them your support? This program is a winner for everyone.

Saturday, February 11, 2012

Miracles Part 2

I'm in love with Theo. He's just super special and everyone seems to know it. My children understand this and share my view of him as extra precious without displaying a hint of jealousy.

But he is so delayed. Way delayed. Take a child with Down Syndrome and throw them into low quality institutional care, add four years of neglect and near starvation and that is what you get. Major delays in all areas of development.

From the day I met Theo I've been trying to just pour love into him. I've been trying to make up for those four years of nothingness. It's slow going.

Theo is obsessed with food and water, and spends most of his time at home trying to get into the kitchen to get a fix. If someone leaves their cup too close to the edge of the counter he impulsively grabs it and dumps it directly on his face. We had to get a new refrigerator with a locking water dispenser because he had learned to stand under it and make the water run.

Theo will eat until he throws up. He has no concept of being full or satisfied when it comes to food. He attacks any food placed in front of him. If you get to close he will snag your plate, even if you are just walking by. He's fast and his arms are suprisingly long!

But on the bright side...

Theo is now walking. I thought he might never do it.

Theo is now signing "more." I thought he might never be able to communicate.

I swear that Theo is learning to wave "bye-bye" to his school bus when he comes home in the afternoon. It's still not clear to me if he's really waving or not. The ladies on the bus swear up and down that he chews on his shoe and says "EAT!" all the way home each day.

Each evening after getting his growth hormone shot and before bed I like to spend some time just cradling Theo in my arms. Holding him this way feels as sweet and nurturing as if I were nursing him. We look into each others eyes and just "be" together. Does that sound corny? It is totally corny...and wonderful!

It might be my imagination, but I think I have noticed that Theo's rapid eye movements (nystagmus) settle down when we are making intense eye contact. Silly, right?

When I'm speaking to him, I catch him watching my mouth. Every few minutes he will give me a quick head nod and sometimes make a vocalization at the same time. Sometimes a "bah!" or an "uhhhh!" He loves when I blow in his hair. Recently he has started to copy me by making kissy lips, as if he is blowing in my hair.

I often say "say mama, maaaa-maaaa." Sometimes I say it with my lips on his cheek, or on his forehead, or right on his sweet lips. I often move his little chin up and down with my hand while I say it. He allows me to do this. He trusts me.

Tonight, as I was cradling Theo, he suddenly whispered, "mama." I couldn't quite believe my ears. Was I imagining this? No need to get excited, it was just a fluke. As I was talking myself out of believing, he whispered it again.

Theo said "mama."

Thank you, God, for the privilege of being Theo's mom and witnessing these miracles in his life.

Miracles Part 1

I've seen more miracles in the past five years than I can count. And each time I'm amazed. Why am I amazed? I should be expecting them, right?

You may not understand these, unless you have a child with learning delays. I wouldn't have understood before Ralph. Let me just tell you these are big. BIG.

Last week I was attending an activity at church with all the children. We were eating a meal and Ralph was unusually restless. He just couldn't or wouldn't sit in his chair. He's normally such a good boy and he listens to me, so I couldn't understand why he wouldn't sit still.

And then it happened.

Ralph stood up and with both of his hands he pointed to his behind. Ever so softly he said, "poo."

I snapped to attention and quickly peeked down the back of his pants, fearing the worst, but there was nothing in there. I snagged his hand and we ran to the nursery where they have toddler sized toilets (so cute!).

He told me. He made it in time.

I think I cried happy tears.

Ralph is becoming increasingly verbal. In some cases he is refusing to sign, preferring to talk. If only I could understand him 100% of the time! He is always willing to work hard on his speech skills, so it's just a matter of time now. My prayers for him and his ability to communicate are being slowly answered.

I consider this a miracle.