Sunday, January 11, 2015

Sleeping Russell ~ An ENGINE!

Sleeping Russell woke me up early this morning:

"What's that? He asks me.
"What?" I ask not, fully awake "What's what?
Sleeping Russell grabs my hand and holds it out flat and places something very tiny in my palm and closes my hand around it.
Afraid I'll drop whatever he just put in my hand, In my groggy state, I am thinking perhaps the ball from my lip ring has come off and he found it. Whatever was in my hand was so tiny I couldn't even feel it... I ask him again. "What is it?" I'm not sure why I thought he knew what it was when he was the first one to ask what it was, but it was almost 4am and I was half asleep myself. That is, until he told me what it was...
"It's an ENGINE!" he declares.
Finally I am awake and realise what is going on here. "An engine?"
"Mmh hm!" Sleeping Russell says, eyes wide with childlike excitement while I stare at him like he is a crazy person. Then he rolls over and goes back to sleep, and I grab my phone so I can write it all down before I forget exactly how hilarious my husband is when he is sleeping.

Monday, January 5, 2015

Sleeping Russell ~ There's a Kit for That

Sleeping Russell doesn't say much these days. Usually the things he says are short and not very funny, like "Did you close it?" I've tried urging him to continue. Tried to keep the conversation going. At first I just asked the obvious questions like "Close what?" he would just look at me expectantly without answering, like he didn't actually hear me, and then tell me he loves me and how pretty I am and then go back to sleep. Now my answers to questions like that are  a little more creative like "No! I didn't close it and now it is full of bees!!!!" But he just looks at me like I'm crazy, and says "what?" then he carries on telling me he loves me, and that I'm pretty and goes back to sleep.
Last night I think the stress of being the one healthy person in a house full of puke this past weekend, got him to the point of some good crazy talk though.

In bed reading as usual Sleeping Russell looks up at me and lovingly places his hand on my shoulder and says:

"If they had a methamphetamine making kit I'd get it for you."

Isn't he the sweetest!?

Friday, October 10, 2014

Acceptance? Awareness? Experience.

It's October again and that means it is Down Syndrome Awareness Month! ...But... I don't really like the awareness part there. I think maybe I would prefer it be called acceptance month? I suppose people need to be more aware of those who have Down syndrome to understand how similar we all really are. Then perhaps they can accept them as peers. But when people are raising awareness for a cause I feel like it is usually because there is a problem that needs to be addressed. Something is wrong, people are dying, something needs funding, and research, and help! Down syndrome is not a problem. People who are unable to see those with Down syndrome as equals are the only problem. But how do we make them see that when we are raising awareness? Making ourselves appear to be broken and in need of assistance.

This past Saturday we walked in the South Puget Sound Up with Down Syndrome's Buddy Walk. It was GREAT! It was so much better than it was last year, but my favorite part was the giant groups of highschoolers they had out there helping out. For one it meant I was relived of my face painting duties so I actually got to have fun and experience all the festivities myself, which I had been worried I would miss out on. While prizes were being given out and speeches were being made, a group of football players sat over on a curb. Arden was getting wiggly so I set him down and he immediately ran over to them and started waving his arms in the air and yelling at them, as he does, and these teenage boys who you know usually probably only think about themselves. And girls. And themselves with girls, and I suppose football, well, they all turned to mush over this little boy in their faces getting high fives and yelling at them excitedly for no apparent reason.

Photos by : Jason Zimmer
That is how we teach acceptance!

It made me think of a newspaper clipping my Aunt sent me a while ago about an elementary school where she lives in D.C. with a program, Roots of Empathy.  By bringing a baby into the classroom regularly for the children to interact with the children witnessed the babies different moods, smiles as well as tears, making the students aware of the babies different emotions. It was a start to being able to understand and empathize. Experience will teach them to be patient and considerate of others. I thought that was AWESOME! This is how we learn acceptance too!  It made me want to set something up with the boys school where I could bring Arden in to play with some classes because you really do need to experience Down syndrome.

When I drop the big boys off at school in the mornings I walk into the building with them and stand against the wall of the gym. They sit in their respective lines behind a cone with their teacher's name on it. Ephraim still wont let me just drop them off and leave. I have to wait until the bell rings and the teachers comes to collect their class. Then I have to wave and blow kisses back and forth with Ephraim until he is out of sight. But until the teachers come out Arden does his own thing. I let Arden loose in a gym full of children grades K-5. He runs around from class to class interacting with the children. Earlier this week he ran up to a little girl in one of the kindergarten classes. She was sitting at the front of the line quietly, not talking with friends behind her in line or anything. Just facing the front a somber expression on her face as she stared down at the floor. When Arden ran over to her I was a little worried his presence was not going to be appreciated. Maybe she needed to be alone. Just as I had decided to intervene the little girl looked up at him. He leaned over closer so they were face to face, just a few inches between. He furrowed his brow as looked at her like he was trying to see why she looked so sad. Her face softened as she looked into his eyes and she then just reached out and hugged him. He hugged her back. It was just a quick hug, three seconds tops, and then he continued on to other students, waving in faces and stealing lunch boxes, but that little girl continued to look more relaxed than she had before his hug. It was then I realised what I had already been doing by letting him run wild through the gyms in the morning. They were experiencing Down syndrome. I was exposing the future to it before they have time to see it as anything else. They will know Arden as compassionate and loving, and silly, and sweet, before they learn anything about that one extra chromosome that makes him so very different in the eyes of others. I stopped worrying that the teachers might not like it that I let Arden run around free when the children should be sitting quietly in their lines waiting to be collected. What Arden is doing is much more important. He is showing the world that he is not broken. He does not need help, or funding, or research. He is Arden and he is awesome.

Happy Down Syndrome.... uuuuh.... something Month! Go love someone with Down Syndrome, and then keep doing it all year round.

Wednesday, September 17, 2014

Baby Hulk ~ Toddler Group

     Arden was too excited about starting his first day of toddler group today. After 2 failed signs I finally spelled everything right and managed to get it to all fit on the third piece of construction paper. And then he wouldn't let me take pictures!
No time to hold signs! Lets go!

     We arrived at the church where Toddler Group is held. We were the first ones there and the office ladies didn't seem to know what was happening. As the office lady was about to take me back to the class I reminded her I was pretty sure I was suppose to sign in. I wonder if my being 5 minutes early threw her off because there was indeed a sign-in sheet right there on her desk and I had been told ahead of time I would need to sign in. I signed us in and she walked us down the hall where we ran into Teacher Barb! She greeted us, made us name tags, and showed me a cubby to put my bag in. Then we played in the classroom as the other toddlers showed up with their moms, and one "nana".
     Arden was the only toddler with Down syndrome in the group. I have to say I was a little disappointed. I would really like to be able to get to know some other kids his age with Down syndrome, but the local Up With Down Syndrome group is run by an older couple whose kids are all adults now so I just don't think they even think about how important that might be to others. There was one little boy who will be 3 soon, but I think everyone else was closer to Arden's age, though I am pretty sure he was still the youngest. There were 2 sets of twins out of 7 kids in the class! I wondered if they were just preemies and needed a little extra help. One of the sets of twins I had actually met before in my babywearing group! I am pretty sure the little girl has spina bifida. I thought I saw a scar on her lower back at one of the babywearing meetings, and she uses a walker and has leg braces. She also has the best little chuckle ever. Her twin brother is the sweetest little boy I think I have ever met. He just walked right up to me and wrapped his arms around my legs and laid his head on me while I was just standing there not even paying him any attention! The other set of twins will be 2 in a couple of weeks so I believe they were the closest in age to Arden. Their names were Jane and John and I couldn't help but giggle to myself and wonder if their last name was Doe. Arden played with the Doe's the most and really seemed to like their momma. She was fun and young and actually interacting and playing with all the kids not just her own.
     We played around the room for about 15 minutes and then Teacher Barb rang a bell. We cleaned up our toys and then all came to the middle of the floor and sat in a circle around a hula hoop. We sang songs and learned signs for parts of the songs. Then we played with a koosh ball in a toy frying pan. After that it was snack time. The kids all sat down at a crescent shaped table washed hands and passed out bowls and spoons. Teacher Barb sat across from them at the center of the table and dropped little dollops of apple sauce in their bowls as they ate and passed out pieces of graham crackers. Then she passed out cups and poured in about a tablespoon of water as they finished up eating. Jane Doe kept pouring her water into Arden's cup secretly and then asking for more. Only Arden and I seemed to be onto her sneaky ways.
     After snack we all went out into the hallways where there was a line of trikes against the wall. The children were all supposed to pick out a trike and ride down to the gym but in the chaos Arden ran ahead and followed Teacher Barb's helper with the basket of balls instead. Arden loved the big gym. It echoed and he ran around yelling the whole time he played enjoying the sound it made.

     Finally it was time to go back to the class. It was sand table time. Arden was the only one there who just couldn't refrain from throwing sand and dumping it on the floor so Teacher Barb stood behind him to encourage the not so messy kind of sand play for the remainder of the time. 
       Then it was time to go! We gathered around the hula hoop one more time and sang goodbye to everyone.
"Goodbye, Arden. Goodbye, Arden. Goodbye, Arden. It's time for you to go."
     It was a 2 hour class full of fun an excitement and Arden was totally exhausted by the time we got to the car. He was passed out before we were even halfway home and took a nice 2 hour nap.
     I am pretty excited to have this become part of our week! He had a blast and I had a pretty fun time watching him get to play with other kids his age. It has been hard filling the time when his big brothers are at school. I can only read him so many books and I'm no good at the crazy wrestling play he does with his brothers. This is one day a week I wont have to worry about boring him to death.

Friday, September 12, 2014

No more PT?

Yay! BACK TO SCHOOL!!!!!! The first day was Sept 3rd and I was sooooo ready for it! I still managed to get all emotional walking Ephraim up to the school for his first day of kindergarten. My nose got all itchy and everything (that's how we heartless people cry in case you didn't know)! But summer break is just WAY too long! We were all ready for a break from each other. Before we headed out to school  I took all the first day of school pictures of the big brothers. 
 Arden snuck into Nolan's shot looking like Chucky...

...So I was more than happy to oblige when Russell asked me to take pictures of Arden for his first day back to Physical Therapy today! Made him a sign and everything! He was pretty excited to get his own sign and knew exactly what he was supposed to do with it.

As we waited to check in for PT we ran into another mom with a 2 1/2 year old little boy with Down syndrome. He wasn't yet walking. I felt guilty telling her when she asked, that Arden wouldn't be two until November as he was excitedly running down the hall to go find his beloved room of fun. Ms. Annie was amazed by his progress and how strong he is. After she bragged about him to all the other therapists as they passed by, she told us she didn't need to see us anymore! Just a quick visit every couple of months so we can see how he is progressing! What!? I mean I know he is doing awesome and all that, but we love Ms. Annie! We missed our appointments over the summer!
     I guess, in the early intervention program, once they are established in walking they just send them on their way.
     Instead of PT Arden will be starting Toddler Group next Wednesday! Apparently it is kind of like preschool and sounds super fun.  I guess I'll be making a new "first day"sign! This feels more like a real first day of school anyways. I hope he loves it just as much as he loved PT.

I hope everyone had a great summer and hopefully now that I only have one child to entertain during the day I can get back to this blogging business!

Tuesday, July 8, 2014

Sleeping Russell ~ The Kicking Gecko

It has been a while since I have been able to get good enough material to post about Sleeping Russell. I suppose I could have posted about the baby black widows in the bed after an egg sack burst, but I just didn't feel like I could paint a good enough picture of Sleeping Russell bouncing around in the center of our bed in a Spiderman (coincidentally enough) type crouch, wild eyed and whisper yelling about "BABY SPIDERS EVERYWHERE!" ....Well... I suppose that wasn't too bad of a picture painted... I just wasn't feeling it at the time. I'm not really feeling it this time either but recently my Mom stopped over at the blog to read about Baby Hulk, but never actually got around to it because she got caught up in the tales of Sleeping Russell so for my Mom.

Last night...

Sleeping Russell says:
"It's kicking!"
"What is?" I say as I watch him fumble around with the sheets at the bottom of the bed.
"That lizard thing you're getting." he replies, sitting back on his elbows to look at me.
"What lizard thing?" sorry, you are mistaken sir. I am sooo not getting a lizard!
"You know, that one you're trying to catch, what is it... a gecko?"
"A gecko? And it's kicking?"
"Uh huh! ........MEOW!"

Okay Sleeping Russell... Okay...

Thursday, June 26, 2014

Baby Hulk ~ Two Weeks

I wish you could see what I see.

I wish everyone could know Arden like I do. To me he is not a special needs child. He is only as different as his big brother Nolan, who knew his entire alphabet at age 2, is different from Ephraim, who at age 5 still cannot write his whole name (it is a tricky one).

For almost two weeks my sister-in-law visited with her family, and at one point at the beginning of her visit I realised, I think Arden is a special needs baby to her. I don't remember what it was that made me think that, maybe she seemed uncertain or overly cautious, maybe it was nothing at all, but it made me think that she saw that he was different. Suddenly it stuck me. All my friends and family I have, I see often. They have seen Arden and have interacted with him regularly since his birth. They see him the same as I do. He is just a little ball of cuteness with fat little starfish fingers and potato feet. He is our beautiful boy with pretty soft curls. His lovely sometimes grey, sometimes green, mostly brown eyes. He is our sometimes ginger. He is Baby Hulk. We know him and we see him.

I was sad to realise that she probably didn't see what I saw, but of course she didn't. She had only met him once before when he was about 3 months old! This is how the rest of the world who hasn't been lucky enough to interact with him on a regular basis, will see my amazing Baby Hulk.

Luckily we had two weeks. Two weeks for Arden to show a family that he was only as different as anyone else. He doesn't need special treatment. He can play rough and tumble with his cousin and brothers. He is sneaky! He will throw your caramel coloured carbonated sugar water all over the carpet and make you look bad (he actually got my tea today). He is fast and wild and just like any other little boy.

I wish everyone could spend two weeks with him. Two weeks to see what I see.

Two weeks, to see what she saw.