7.30.2009

HAPPY BIRTHDAY!!!



I absolutely cannot believe that J has been in our lives for 5 years! And then on the other hand, I can't remember what life was like before him. He is the sweetest, most wonderful little boy I've ever known. It's sad that I've almost forgotten how small he was and what it was like to snuggle with his tiny little body and sniff his sweet head. Time goes by waaay too fast.

I woke him up this morning and gave him a big kiss and said, "Happy Birthday sweet boy!" and he said, "Happy Birthday Rectangle Ellen." Goofy kid. I'm teaching him to say, "I'm five!", but it hasn't quite sunk in yet.

Grandma and Grandpa are coming tonight and we'll have a party on Saturday. I'm going to make a cupcake Thomas Train mountain (wish me luck). Hopefully, he'll decide this is the year to try some cake. He took bottles of bubbles to give to his friends at school as a birthday treat.

Object du Jour: A license plate with his name on it and a small camera.

7.29.2009

Yikes!

Have you ever heard a sound that made your stomach bottom out? Last night, I put the boys to bed and sat down to watch TV. I heard a crash and went flying up the stairs 4 at a time. Jackson decided to get out of bed, while hooked to the pump. The pole and bag were on the ground and he's halfway out the door trailing the tubing behind him, giving me a "what's your problem" look. I always make sure to double over tape on the tubing and pin it to his PJ's for this very reason. I'm terrified he's going to pull the whole MIC-key button out of his belly. If he does, we have to go to the ER to get it looked it and make sure there's no damage. He's never tried this before and I always remind him not to get out of bed, but to call me if he needs something. Let's hope this is a one-time deal.

J had a good day in feeding therapy yesterday. He dipped his Club cracker sticks in jelly and ketchup and took bites without gagging or spitting too much out! Yay! He wasn't a fan of picking up the Mandarin Oranges though.

This morning, we went outside and painted with watercolors. The boys had fun and made some lovely masterpieces. Now the little guy is sleeping, so I can get to work around the house getting ready for J's birthday party on Saturday.

On a completely unrelated to anything note: Why the heck did the Babies R Us flyer that came yesterday have Halloween costumes in it? It's flipping July!

Object du Jour: J is making me draw toilets on the Magna Doodle. Fun.

7.27.2009

Spongebob Squarechalk

Yesterday, Daddy and J2 went down to the lakefront to watch the air show. J and I stayed home; I didn't think J would enjoy the sounds down there at all. Daddy said Jameson loved it and kept saying, "ah-pane" while pointing at the sky.

Jackson and I watered the flowers, painted the steps and sidewalk with water and blew bubbles. Then I remembered we had a brand new package of Spongebob sidewalk chalk that we got with our Kalahari tickets. Jackson had a blast marking up everything outside with chalk. It was fun watching him experiment to see what kind of marks the chalk would make on the sidewalk, grass, lawn chair, picnic table, and the tires on my car. Of course, I had to make giant rectangles on the sidewalk. We had fun jumping in and out of them. It was a nice day with my special fella.

The next few weeks are going to busy for J. This is his last week of summer school, his 5th birthday is Thursday and family is coming over on Saturday to party down; he has OT, feeding, genetics, dental clinic, ortho and his 5 year check-up all in the next two weeks. Then we'll head to State Fair and before we know it, he'll be a big guy in 4K. Wow, this summer went fast!

Object du Jour: The "tape back." Daddy has some computer back-up tapes. Naturally, they are rectangular, and J has decided to call them a "tape back."

7.19.2009

Pardon me, do you have the time?


Why, yes he does, for three time zones! Daddy was working on the front porch and had these rolls left over from putting down no-slip strips on the steps. The boys thought they were fun to play with, so I got the brilliant idea to whip out a Sharpie and draw a triangle watch, a rectangle watch and a circle watch on each one. Jackson insisted they have "letters", so I wrote his name on them as well. Everyone say it with me, "Why do I buy toys again?"

Object du Jour: The watches.

7.17.2009

Wheeee!

So, there are days I think, "I won't blog today, I can't think of anything to write about." Today was one of those days until about 90 minutes ago. In the span of 30 minutes, Jameson locked himself in the downstairs bathroom, Jackson smashed his hand in the silverware drawer and I blasted myself in the head and pretty much half of the kitchen with half a bottle of Raspberry Vinaigrette.

Randy came out of the bathroom, didn't realize Jameson went in behind him and click, there goes the lock. Our house is really old and the lock needs a skeleton key, which we don't have. (Which we will now be purchasing at our earliest convenience.)Thank our lucky stars the window was open. Randy pulled the car up next to the window and climbed in. Oh how I wish I had my camera, legs everywhere! Jameson is in the bathroom, happy as a clam chattering to himself and playing with the doorstop. I'm outside the door yelling, "I'll give you a cookie if you unlock this door!" Not my proudest mom moment.

We all head into the kitchen to make salads for lunch. Daddy grabs a fork out of the drawer and doesn't realize Jackson has reached in for something. Ouch! He's OK, but keeps telling me, "The rectangle pinched my fingers." Poor kiddo.

THEN, everyone has finally cleared out of the kitchen, I make my salad and shake the bottle of dressing, not realizing the lid is not on tight. Man, that stuff can fly. My hair and clothes were soaked, the floor, counter, microwave and wall are covered in pink goo. It's not easy to clean up an oily mess.

Now, I'm finally eating my salad, typing this up while the boys watch the Car Wash again. I'll get to wash the gunk out of my hair once Randy is done with his work call.

I think it's best we don't leave the house today, but on the bright side, I smell pretty yummy.

Object du Jour: A Star Trek flashlight that came out of the cereal.

7.16.2009

Workin' at the Car Wash, yeah!

Jackson has never been much of a TV watcher. A friend gave us a Baby Einstein video when J was born and he didn't look at it at all (for a while I seriously thought he was blind as an infant, but that's another story). He's had passing interests in The Wiggles and Thomas the Tank Engine, but the only time he's watched whole episodes is when he was confined to a hospital bed. He's much more of a "hands-on" type of kid and would much rather play with Thomas trains than watch the show.

Lately, he's had a small interest in Blue's Clues. That is, until we found the "Car Wash" episode yesterday. Joe and Blue ride with "Carmen", a bizarre mini-van piloted by the driver's seat with a face on it. Joe and Blue ride in the backseat and sing the Backseat Boogie (with a special guest appearance by Casey Kasem). They stop for gas and then finally arrive at the car wash. Jackson watched this episode 7 times yesterday. He got to the point where he was answering all of Joe's questions to the audience without batting an eye. When he woke up this morning, the first thing he said to me was, "Blue's Clues Car Wash."

I have mixed feelings about this. I'm interested to know why this episode caught his attention, he's learning by watching it, he's showing a good attention span, but I don't want him watching that much TV. Jameson could have cared less and after watching for a few minutes, went off and played with toys.

When we weren't watching Blue's Clues ad nauseum yesterday, we played outside. I filled up buckets of water and gave the boys big paintbrushes. They painted the house, the garage, the driveway, the doorbell and me. They had so much fun watching their designs on the driveway disappear in the hot sun.

We also went for a long walk and Jackson would yell, "Rectangle!" at people that passed us. He thought that was so funny. I got strange looks from the people that were the victims of the rectangle drive by, but if you can't appreciate a good rectangle joke than what can you appreciate? So, this rectangle walks into a bar....

Object du Jour: Car Waaaaaaash!

7.14.2009

Ollies!!

When we go to the store, does J2 cry for candy or cookies or other sweets? Nope, black olives. He clutched the can of olives through the whole shopping trip and screamed when I had to hand to the cashier to scan it. I handed the can back to him and he tucked it under his arm and glared at the cashier. We got home and he pulled the can opener off the shelf and handed it and the can to me. Ollieeees!! So, for dinner he had scrambled eggs with cheese, black olives and blueberries. Yum!

For J's daily caloric intake, I've been monitoring everything he eats and making the daily batch of his formula in the morning. What he doesn't drink during the day, goes into his tube at night. Let's hope this results in a weight gain. He's such a skinny little thing. I have one kid who could care less about food and one kid who can eat a whole can of black olives! (Disclaimer: I wouldn't let J2 have a whole can of olives; the resulting diaper would be incredible!)

Object du Jour: The "rectangle teeth".

7.13.2009

If you are really, really bored...




Our two favorite You Tube videos (aside from the ones the boys star in). I can't tell you how many times we've watched the one with Buddy in the sink. I have no clue why they find it so fascinating.

7.12.2009

Fun with Potato Head Parts!



These two find nothing funnier than sticking Mr. Potato Head parts to their faces!

The bottom picture is Jameson holding "Baby Rectangle Ellen." Her name used to be Stickers, but J has decided to stick with the Rectangle Ellen theme.

I got the doll for Jackson when I was pregnant with Jameson on the advice of our Beh Psych. J never played much with her until recently. He'll fake cry and bring her to me and say, "Baby cryin'." I ask him what we should do, and he's starting to tell me, "change diaper", "get water bottle", or "hug." It's nice to see some more imaginative play skills emerging.

Object du Jour: The baby laundry basket. I had to search through all the doll house furniture while J stood there and cried, "Find it, find it!"

7.09.2009

Correction...

I need to correct something that I wrote. I've offended myself. lol Jackson has autism, not Jackson IS autistic. He is a beautiful kiddo first and foremost. The diagnoses, of both trisomy and autism do not define who he is as a person. He's not an autistic kid or a trisomy kid. J is a boy who happens to have both of those things.

J was absolutely freezing before school this morning. His legs were mottled and he was shaking. I put a sweatshirt and hat on him, hoping that would warm him up a bit. Poor kid has no body fat to keep him warm. I've talked to his doctors about his, and no one seems to have an answer for us. It doesn't help that it's July and it's in the 60's this morning. It may have even gotten into the 50's last night. Crazy.

So far this morning, it's only 10, so the day is young, "Crash" aka Jameson has managed to stay in one piece.

Object du Jour: A fistful of toothbrushes. J wasn't happy I wouldn't let him take them to school.

7.08.2009

Baby Steps

Today I have:

-made an appointment at The Wisconsin Early Autism Project (WEAP) for an eval on November 24th. (We're also on a waiting list for an earlier appt if there's a cancellation)

-called the county to get on the list for waiver funding.

-printed out the membership form for the Autism Society of SE WI and will mail it this afternoon.

-found out that our governor signed a mandate for insurance companies to pay for autism treatments on June 29th that should hopefully take effect Jan 1. *Fingers crossed*

-signed up for the Spa Day lottery through J's respite provider. Let's hope I finally win something, I can use that massage in the worst way!!

I'm trying to be proactive as possible and I think we're started in the right direction.

Thank you to those who have sent notes of support and good wishes. I can't tell you how much I appreciate it and need it right now. You people rock!

On a completely different note...I heard the horrible thump through the ceiling that I knew was coming: Jameson climbed out of his crib for the first time and whacked his cheek on something. He's got a nice red mark on his face. My little daredevil! ETA: So in the last half hour before bed, the child has bit his tongue enough to make it bleed, fallen off the couch and been pushed by his brother into a chair. Sheesh, let's hope tomorrow is less catastrophic.

Object du Jour: A plastic Halloween pumpkin, the kind to carry candy in. I'm on the phone with WEAP and J is yelling, "pummmmpkin!" He dragged me to the closet, I opened the door and he pointed to the pumpkin. How he remembered it was in there, I have no clue. He likes to sit on the floor and shine a flashlight through the orange plastic.

7.07.2009

The A word...

So after the 3 weeks of testing at the PINT clinic, the results were given to us yesterday. Jackson is autistic. It's like everything changed and nothing changed in one sentence. I've known in my heart of hearts for a long time, but until I heard it out loud, it didn't really exist. If I don't say anything, maybe no one else will notice. It's like a sucker punch you see coming, it doesn't hurt any less because your eyes were open.

I'm choosing to look at this as a positive thing. Instead of floating along alone in the trisomy world, we now belong to a club with millions of members. I'm hoping that we can better help Jackson with information and support from both the trisomy and autism worlds. I guess now I just need to learn the secret handshake.

I've left a message with someone at the WI Early Autism Project in the hopes that we can get him enrolled in ABA therapy to better help him function in the world. I haven't heard back yet, but I'm optimistic.

We'll get through this. Somehow we always do. Jackson is still the same sweet, funny, lovable, incredibly awesome kid he was Monday morning. The news Monday afternoon didn't make him into a different person.

Object du Jour: The "thermometer downstairs". Still haven't figured that one out yet.

7.05.2009

I Scream...










You scream, we all scream for ice cream! Well, really just Jameson. We took the boys to Summerfest today. It was the last day and admission was free from 12-3. Can't beat that!

They were giving out M & M's ice cream bars. Jameson loved it, until that last lick sent the remaining bits into his lap. He was so upset! The 4th pic above is a last ditch attempt to stick the bits from his lap back on the stick. It was adorable and pitiful all at the same time!

Jackson wasn't happy to be at Summerfest for the first hour or so. He cry on and off and say, "Get in Mommy's car." After that, he liked watching the people, but didn't want to leave the safety of the stroller. We got Jackson a new Summerfest shirt and that became a bit of a security blanket for him. He held the shirt to his cheek and that seemed to make everything better.

Object du Jour: The pink door. He's been so attached to that door lately.

7.04.2009

Happy 4th!

We attempted to go to the parade today. Same 'ole story: Jameson loved it. Clapped, danced, waved his little flag from the Cub Scouts. Jackson, hated it. He cried until he gagged with huge snot bubbles coming out of his nose. Daddy and Jameson went to a friend's party and Jackson and I sat on the porch and drank juice boxes. We live less than half a block from the parade route, so we were still able to see and hear it from the porch. J was OK with that. Every so often, he'd tell me something was too loud. We don't even attempt the fireworks at all.

In the afternoon, we went to a friends' house for a cookout. It was at Jason's house, not to be confused with Rectangle Jason, J's other friend named Jason. I love his method of delineation. He loved playing with their toys. Jameson had fun going in and out and even figured out how to unlock the screen door.

Tomorrow we'll head down to Summerfest for a bit and see how that goes.

Object du Jour: The pink door and a yellow plastic piece of cheese.