December 16, 2015

more behavior

There is a great new show on A&E documenting a group of adults with Down syndrome called Born This Way. I've been watching it with the intensity of a scientist gathering information on an illusive animal. I want... no I need... to know that my buddy will mature someday.

I realize that he is only 7 and the behaviors he has today won't last forever. But the thing is, every phase can last so very long. My buddy first started throwing food over 5 years ago. While he no longer throws full plates of food, he's been known to shove a full bowl of milk and cereal (that he just asked for) with such intensity that it goes flying. That is 5 long years of cleaning up food that has intentionally been thrown on the ground.

I am willing to bet that my buddy has the biggest behavior challenges out of all the students in his school. It is so hard to imagine a time where he just does what he is supposed to. I'm not asking for a miracle. Maybe stand in line for 10 minutes without kicking the person standing in front of you. Perhaps walking down a hallway without throwing yourself on the floor. Not biting people. Sitting and working for more than 30 seconds.

Some day I hope to look back, laugh and say, "Remember how you couldn't leave him alone for even just 10 minutes? Like that time he pulled off the heating vent cover and filled the duct with cars?"

I expend so much energy always knowing where my buddy is and what potential victim is near. Worried if he's going to lose his mind in the middle of the outing. Feeling stress every time we go out. Just wanting to get things done around the house and not be in a battle zone. The anxiety when I read the log of how his day was at school.

I have a hard time explaining just how hard it is to be constantly redirecting unwanted behavior. Unless you live it every day, there is no way to fully understand. I think that's why parents of special needs kids tend to rely so much on each other (even just virtually).

I know my buddy has come leaps and bounds. He's learned not to run off into the street which is a huge deal. He has a good sense of what is physically reckless and will carefully climb down if he is up too high.

Most importantly, he has learned how to butter me up. He climbs into my lap, hugs and kisses me, snuggles in for a moment or two, then very casually says, "iPad??"

December 14, 2015

three and a half

I joke about waiting for the day when all the kids are in school full time and I finally have a moment to breathe. The truth is that hanging out with rara all day is a breeze. She is independent enough to play by herself - and still loves me enough to want to play right by my side. With no big kids home during the day, there is no one to start a fight with... because that little face is cute but she's an instigator. Rara has helped with the Christmas decorating and loves the story I tell about how this Advent calendar was mine when I was little just like her.

Rara talks all day long and makes me laugh all the time. She's rarely shy and loves to do things like shout, "Hey Mama! That guy right over there looks just like Santa!!" She will approach strangers to ask if she can pet their dog. She will run up to me out of nowhere just to give me a hug and a kiss.

The most painful part of the day is when she says those dreaded words, "Will you play with me?" Rara will spend about 10 minutes explaining who I am going to be and exactly what I am supposed to say. Inevitably I get it wrong. Then she spends another 15 minutes explaining it all over again... slightly differently this time. I am not allowed to say what I want or choose who I get to be. It's a bit of a dictatorship where rara is the supreme leader. I try to distract her with different fun activities like Play Dough or stickers or making a mess playing in the bathroom sink just so I don't have to play her game.

Rara asks every day if it is Christmas yet and tries to pry out of me what I bought her for Christmas. She was so excited to see Santa. She was the first one to climb up on his lap and the last to hop off. There was't even a moment of hesitation when he asked what she wanted for Christmas. She was thrilled to be talking to the big guy.

I love how little three and a half year old brains work. There is still enough magical thinking where things are never their fault. She doesn't always love to wash her hands yet she knows that by touching them I can tell. So she says, "I definitely washed my hands but I just don't want you to feel them." Every day rara comes to me with an ornament in hand and says, "This ormament accidentally came off the tree by accident." Just today I saw her do this:

Maybe in some other life these little things would make me mad or worried that she would grow up to be a liar. But in this life, she just makes me laugh.