Golf For Life

Pugman (who is Brad's cousin, apparently) left a comment on my post about Brad Hennefer with the link to Brad's Golf for Life organization. It's pretty awesome.

I've been thinking a lot about Tom's thoughts about Pollyanna Syndrome and how sometimes attempts to point out how "normal" kids with Ds are seem empty, almost to the point of insulting ("It's almost as if he isn't different at all!"). But the more I read about Brad, the more I am in awe of what he is doing. Not only is he doing things people probably thought he would never do, but he and his family are advocating on a large scale for the inclusion and advancement of people with disabilities. Just take a look at some of the pictures on that webpage...those people are happy. They are happy and they are making others feel included, confident, and successful. *Also, I look at pictures of Brad and his brother, Bobby, and can't help but hope that Ian and Chase's relationship will have some of the same qualities that theirs does.*

I think this is an amazing example of using his "Other-ness" in a positive way...in a way that no person with a measly 46 chromosomes could do it.

I just like it. And I hope that Chase can find a niche like this.

Treadmill: Day One

Ok. This is a lot harder than I thought it was going to be. I mean, that little PT girl showed it to me and made it look so easy!

Holding an almost 20 pound butterball over a moving belt is kind of difficult.

But we made it 8 minutes (30 seconds on, a minute off). Chase took some independent steps, but much of our time was spent with him sliding off the back and me repositioning him.

And look who is still smiling afterwards! (I didn't post a picture of me. I wasn't smiling. I think my back was spasming...)

Firsts

Today Ian came home with a notice from school about Valentine's Day and a list of kids in the class.

Can I tell you how excited I am for his first Valentine's Day party?!?!

I think we'll make these cards.

Chase's Faces

Random January Photos

Yay! The camera is back! Random photos for your enjoyment...

Whoops! Guess who got caught blogging? Check out Chase's new hat:

Chase gets a sink bath:

Fun at the park (this was before we went to get lunch and Ian wet his pants in the restaurant and we didn't have the diaper bag and the car was 4 blocks away):


Crazy cowboys:

Chase's 9 month stats:

Head: 50%
Height: 75%
Weight: 90% (19lb 6oz...can't quite break that 20lb mark yet!)

Everything looks good...Dr. G told me to work on getting him off a bottle by one year- uh, yeah. We'll see about that. He can hold his juice bottle- reclining in the Boppy. I'm not quite sure that he's quite ready to start on a cup yet, but we'll give it a go and see what happens, I guess.

She wrote a scrip for a speech evaluation, which I thought was going to be through a private clinic, but the CDSA caseworker left me a message today saying that she got the order, so I guess it's through the county. I think that narrows our chances for getting ST because they've told me before that they don't "like to" give ST to kids under 1, and even then, they'd prefer them to be 2 before starting. Please. So, we'll see how that goes.

Now we don't have any more appointments for THREE MONTHS. Oh, except for those Synagis shots. So, never mind. We'll be in every month for the next 3 months. And in 2 weeks for Ian's 3 year well visit. I'm thinking about asking for my own parking space there. And a coffee mug to keep in the break room.

School Stories

"Today my friend Ava said, 'Boys go peepee,' and I told her, 'That's not really a secret.'"

Growing

Ian's been restless at night the last couple weeks. He complains of cramps in his legs and hands. He's also been eating like a MAN recently (bowls and bowls and bowls of LifeCerealPlease).

So last night, at 9:30, when he should have been asleep an hour and a half ago, he yelled downstairs saying he was "huuuuuuuuuungreeeeeeeeeee!" I knew it was a ploy, but what if he is genuinely starving? I hate going to bed hungry. So I let him get up and eat a banana. But before we went downstairs, I made him stand by his growth chart...

Since January 23, 2007: 3 inches

Since January 10, 2008 (2 1/2 weeks ago): 1/2 inch!!

Maybe we won't have to roll the 3T pants for very much longer...

Persistent

Got another DVD from NetFlix today.

"C'mon, Baby. Give me one more chance! I'll be anything you want me to be..."

Love/Hate

Logan tagged Chase for this post...thanks, Logie-Man!

I love Cheerios, Puffs, and Biter Biscuits. (I also like the Christmas cookies that Gaga fed me, but don't tell Mom!)
I love waking up.
I love jumping.
I love being held...by anyone :)
I love it when my brother plays with me...and doesn't bowl me over.
I love my paci at bedtime.
I love biting green frog's head.
I love getting nuzzled on my neck and belly.
I love pulling Mommy's hair.
I love standing at my bead-roller-coaster-block thingy.
I love saying "MA MA MA MA MA MA MA!"
I love listening to and grabbing at books.
I love sitting up so much that I forgot how to roll from my belly to back.
I love my therapists...they make me smile even when I have to work hard.
I still love nursing...thanks, Mom :)

I hate getting water in my face.
I hate it when people try to pick my nose.
I hate pickles and most vegetables unless I'm really really hungry.
I hate poopy diapers.
I hate reflux, too!
I hate diaper rash.
I hate going to the doctor's...everywhere they take me, I have to get stuck!

Really, I don't hate a whole lot of stuff...and when I do have an issue, it takes about 5 seconds to resolve. All the nurses are always shocked at the teeny amount of time it takes me to get over all my shots!

Mom says Ian was always a happy guy...and I'm even more laid back than he was :)

If you feel like being tagged...you're it!

The South

I love it here.

On Wednesday night at class, Dr. D made an analogy between raising a prize cow and accountability testing. With a southern accent.

Breaking up is hard to do...

I canceled NetFlix last Wednesday. They told me to send in the DVDs that I had within 7 days or I would be charged for them.

So I sent them back ASAP.

Then they sent me 2 new ones. I watched one. Then I sent them back.

I thought we were over.

Guess what I found in the mailbox today?

Seriously, NetFlix! No means NO! I feel like I've wronged a lover and now he's stalking me.

If I watch the newest one, is that like break up sex? Will this go on forever? Do I have to move to truly untangle myself from this relationship?

School Report

As Miss Sharon put Ian in my car after school, she said that they were very busy today and that Ian would have a lot to tell me. So I asked Ian what he did at school.

He told me, "Mommy, boys don't like to talk about school."

I asked him if they counted today. He told me, "Yes, we did!" I asked if he would count for me. "No, Mommy. Boys don't count in cars. We only count in school. If you take me to your school, then we can count."

I asked him if he did any projects. He said that he didn't want to do the hand project, so someone else made a picture for me. Huh.

I wonder what goes on there? He was happy, though, and wants to go back again, so that's good.

He did tell me, however, that Jack with the yellow hair was not there today, so he played with Alexander instead. And he says Alexander like this: Aaaaaalexander.

School Days, School Days!

Today is Ian's 2nd day at preschool!

He is such a big boy. I'm so glad that we did this.

I'm getting better at the whole getting-out-of-the-house-on-time thing. The first day (Tuesday) was a little hairy. I asked him if he needed to "go" in a pull-up before he went to school (still afraid to do the deed in the toilet...) and he told me he didn't. Then, like 5 minutes before we had to leave, all of a sudden, guess what he needed to do?!? After that fiasco ("Nope- don't change me yet...I'm still poopin'!") we finally got to school a few minutes late. But I think that was actually good, because kids were already there, playing all over the place. Ian went straight to the boys on the floor with the cars and introduced BlueDog to them. I told him I'd see him at lunchtime, he said goodbye, gave me a kiss, and that was it! When I picked him up, he was so cute, sitting at circle time with all the kids. The teacher said he had a great day :)

I asked him about his first day in the car and he told me, "I rode a bike in the gym, but I didn't climb the tree." Not sure what that's about... Also, he is friends with "Jack, the big kid with yellow hair."

Today we got ready without incident, got to school mostly on time, and he just walked right in like he was a regular. We said our goodbyes, he joined the other kids. I'm glad he has such an easy time jumping into school. But on the other hand, the whiney Mommy part of me wonders if he is THAT tired of me?!? It's all good, though :)

It was really nice this morning to have Chase's play therapy without trying to entertain Ian at the same time. Now Chase is taking a nap, and I have a WHOLE HOUR before I need to pick Ian up.

It's quiet and weird here.

Lightening the Mood

Yesterday I left Ian and Leah and Chase in the car as I ran out to put the HOA sign in the median at the entrance to the neighborhood. I left the door open and could hear them chattering away. When I got back into the car, Ian tells me this(very seriously):

"When you were outside I couldn't put the mints back in this box (the console) and so I said 'Damnit'."

Oops. Apparently I'm not doing such a great job watching my mouth. I try. Things slip out and he's pretty preceptive.

Regrets

So, this post I think made a lot of people think about the words that they said to me when Chase was born and the few months afterwards.

I want to clarify some things.

I don't think there is a right thing to say to anyone when they find out that their baby has Ds (or anything else, for that matter). After going through it, I still don't know what is appropriate. Honestly, I cried so many tears after Chase was born that I couldn't even tell you what they were for. My tears were frustration, disappointment, guilt, fear, loss...then as he overcame medical hurdles they were relief, joy, hope, anxiety...

Sometimes it comforted me to think that God had chosen Bryan and I to be parents of someone with different needs. Sometimes I thought maybe Chase didn't need "fixing"- we did. Sometimes it helped to think that this was random...sometimes I liked feeling "chosen".

There are a lot of cliche things to say. People say them all the time. But I don't necessarily think it's a bad thing. I would probably say the same thing if the tables were turned. Bottom line, I know that friends and family wanted to say Something, not knowing exactly how to convey their thoughts. And I don't blame anyone for that.

I also don't blame anyone for thinking, "Thank goodness my babies are healthy." Why would you NOT be thankful?!? Again, I would think the same thing.

So, please, my friends and family, please don't think that you said the wrong thing, or didn't say the right thing. Just that you were there and thought about us and tried to help means so much to us. I regret making you feel like you did something wrong.

If anything, Grace's post about this is really helpful...for the next time you may face this kind of situation. And read my comment back to her, because I really mean it.

I wish I could say this stuff more eloquently. I have three kids running around here and it's hard to really think this through, yet I want to get this out there now.

Thank you, my friends, for going on the journey with us. Thank you for loving and accepting Chase as your own. Thank you for your prayers and your words of encouragement. Thank you for reading and researching, for trying to understand. And last...thank you for not saying things like this:

"My friend's little boy is eleven and has Down syndrome...and he's potty training now!" Not helpful.

On Another Note...

We finally checked out the local roller rink, Kate's Skating, here in podunk.

And it was SUPER FUN!!

Ian made it around the rink about 4 times. And by that, I mean Bryan or I held both his hands and pushed him around while he stood in between our legs. I'm sure our backs will be feeling that tomorrow...

So for the bargain price of $1 each we got to wear those awesome brown skates with neon orange wheels and skate for a good 2 hours (plus an ink pen...not quite sure what that is all about, but on Mondays when you bring in certain supplies, you get a discount. Bryan actually asked the ticket lady about it:

B: "So, what is the ink pen deal about?"
Ticket Girl: "Way-ell, whin you bring in an ingk pi-en, instaid of payin' $2, you jist pay 1."

Right. So that's all we really know about it. Maybe they didn't budget for office supplies. Next Monday is rubber band night. Seriously. Then next is paper towels.)

Chase liked the disco lights :)

Again- no pictures- camera is still in rehab. Maybe Crabby Mama will post hers.

More on Brad...

You know I love you, Bleeber, but I can't let you walk away with that comment.

I had to stop and think for a while about how to approach this.

Let me first address the issue of strength. Am I a stronger parent because of Chase? I don't think so. Certainly this isn't the path that I thought that my life was going to take, and honestly, I love Chase...but I would never, ever choose a life for him with the hardships that he has already faced or will face in the future. But guess what? I'm doing what ANY parent would do...creating the best life possible for my kids. And it wouldn't matter if Chase was blind, deaf, physically impaired, had ADD or a speech delay. You do what you need to do because you love your kids--- whatever way they come to you.

And what is the ultimate goal? I think, in the end, all I really want is happiness for both my boys. If Ian is happy wearing women's underwear and arranging flowers, so be it. Great! And if Chase is happy training full time with the Varsity basketball team, only playing for 3 seconds at the end of the game, HOORAY!

The thing about the Brad Hennefer article is that he worked hard, his peers and his coaches supported him, he felt accomplished, needed, and accepted. He overcame obstacles that most kids never even fathom. He's not sitting in some corner, watching everyone else live life. Think about the way that people with Down syndrome have been treated up until this generation; they've been committed to institutions, they've been ignored, they've been corralled in special education classes. 90%, even now, don't even make it past the 20th week of pregnancy.

The fact that Brad is part of that team is amazing. The fact that his coaches and teammates encourage him to belong is awesome. I bet he loves every minute of it.

Brad Hennefer

Another article that helps to get rid of the stereotypical Down syndrome kid.

Long Island Blues

Chris from Mothering By The Seat of My Pants posted this article about a hockey team for kids/adults with special needs. It made me smile.

I hope that by the time Chase is ready to strap on some ice skates, we'll have a team in the Charlotte area!

A New Low

Ian is standing with his pants around his ankles in front of the potty. He leans over, as if he is inspecting something on the toilet seat. I start to ask him what he is looking at...

...when he wipes his nose off on the rim of the bowl.

*sigh*

1st Snow

I know it's not that impressive to you Northerners, but this is what we get in NC!

Happy Snow Day!

Regarding the Treadmill Therapy...

I wanted to post more information on this. It is soooo easy, and I think all you other mommies who want to try it should do so without having to wait to find a PT who does it.

These are the quick notes that the PT made for me (from Pediatrics Vol. 108, No. 5 November 2001, p.e84):

On a side note, I don't think this is the most recent study on this. My ped referenced a study that was done about 18 months ago that had even better results. I'm going to check that out. When I have some time and remember and feel like doing it.

*Treadmill speed no faster than 0.5mph
*Support child under arms (as child attains greater trunk strength, can support at hips)
*Attempt to keep feet flat on treadmill. If toes drag, reposition feet flat.
*Child should wear a supportive shoe
*Easiest to support child by sitting on a bench or chair at the end of the treadmill, the child facing away from you. If you can get a bench that straddles the treadmill, you can position that over the belt and you can sit facing the child (I think Chase likes it better when he can look at me).
*Begin 1 minute walking, followed by 1 minute rest break; total of 8 minutes
*GOAL: Build child up to walking 8 minutes continuously by decreasing the lengths of rest breaks.

Perform treadmill walking 8 minutes/day, 5 days/week.

I will try to post a video of Chase as soon as we get the treadmill at the house. Speaking of which, if you don't have a treadmill, but you go to a gym...I don't see why you couldn't bring your kid into the fitness room and pull up a chair for 8 minutes right there. Go for it!

I'm really trying...

I have to read one chapter of my text for class tonight. And I'm trying. I'm really trying.

But it has sentences like this in it:

Unless the delegating statute contemplates redelegation, the original authorized administrative body cannot transfer its discretion to others.

It's like trying to navigate the streets of downtown Charlotte while looking at a map of Tibet.

Treadmill Therapy

Today we went for Chase's first treadmill therapy. I know, I know. It sounds pretty ridiculous. Even Ian said, "But Chase can't walk on a treadmill. I want to walk on the treadmill."

Basically, as soon as children can bear weight on their feet, and if they have enough trunk strength to sit up, they can start. Chase was on the treadmill for probably a total of 5 minutes at the rehab center today- eventually he'll work up to a maximum of 8 minutes per day, 5 days a week. So, really, when we do it at home (as soon as we get the treadmill) it will be quick and easy (and we can cut out the 45 minute drive to the center. That would be excellent.)

The therapist gave me the complete study to read, and was really encouraging- also down to earth. We're going to practice doing it at home by ourselves, and check back with her in 3 weeks to see if we have any questions. She also suggested we get Chase some shoes to wear for about 50% of the time just to help give him a little arch support. So we stopped at Rack Room Shoes on the way home and bought the tiniest, cutest pair of New Balance running shoes I have ever seen. I would post a picture, but our camera is away getting it's own rehab.

**On a side note, Ian told me in the car on the way home what he wants for his birthday: "I would like to have a Woody doll, some light up sneakers, a BIG BIG rocket, and some new carrots."

Happy Poop Day

Chase has some sort of stomach virus. It started last night. We've been through 5 outfits.

Yuck.

Interesting

Stanford School of Medicine's Center for Research and Treatment of Down Syndrome.

All of it is interesting- their mission, message, and research. Especially this most recent finding in 2007: "Pharmacotherapy improves cognitive performance in a Down syndrome mouse model".

Road Trip?

Anyone interested in driving to Orlando with me on March 1st? Actually, it would be Feb 29th-March 1st.

I have to take that damn FELE exam, and this was the best date/site. I think I'll have to take Chase with me because he'll still be BFing...? If you come with us, you have to babysit for a few hours on Saturday...

Or maybe I'll just get the pump out again. I hate that thing.

Done and Done.

The boys and I went to go check out a local preschool this morning. I think Ian needs some new scenery. And some dudes to play with.

This preschool has a two morning or three morning class, and I really liked what I saw today. So I signed him right up for the two morning program! He starts on Thursday! We're both way excited :)

Helping

I asked Ian to help put his laundry away. I would fold the clothes out of the dryer, then hand his clothes to take into his room.

He came back from a run and asked to help some more. I gave him another stack. He proceeded to wipe his runny nose off on the top of the stack as he walked down the hallway to his room.

Yet another reason why I question the necessity of actually washing the clothes.

Lost Marbles

Ian got Hungry Hungry Hippos for Christmas. He LOVES it.

He also loves putting the marbles into containers/couches/other random toys.

So when the 20 Hippo marbles disappeared I spent days trying to convince him to tell me where he hid them. We looked everywhere...no luck.

I found them today. I had hidden them in the pantry because he was throwing them a few days ago.

Now who's lost their marbles...?

Super Techno-Geek

I would just like to brag for one second:

My computer decided to stop communicating with the printer a while ago. My solution? Don't print anything anymore.

That got old pretty fast. So today I decided that I would have to remember to ask Bryan to fix it for me when he got home.

Then I thought, well, maybe I could play around a little and figure out the problem (not that I have any idea what to do-- I remember Bryan uninstalling and re-installing something once, so I thought that I could do that somehow).

I never got to the installing project, because I clicked on a few things and voila! a print job! Hooray! I am a computer genius.

Fate

Today, despite numerous obstacles, I made it to my first School Law course. I want to write so much about what happened tonight and the feelings of fate/destiny/God-works-in-mysterious-ways...but I don't really want to sit here for as long as that would take; so I'm giving you the Cliff Notes version.

1- I almost didn't take it because it was overbooked and I had to beg the dean to bend the rules for me.

2- My professor taught for 10 years in an EC classroom before going into administration and eventually becoming the Superintendent of Union County Schools.

3- There are at least 7 other students in the 30 person class with EC backgrounds.

4- The EC teacher from the school that I did my practicum in last year is in the class (and she also has 4 children, each one with special needs).

5- A lady in there has a child with mental disabilities (not Ds)- she also has 13, yes, count them, 13 children.

6- Both #4 and #5 went out of their way to talk to me about Chase and tell me their stories- how their kids changed their lives. They are such strong advocates, and I loved speaking with them. They told me, "Don't you EVER listen to what anybody tells you Chase can or cannot do."

Good words.

Question

Why can't Ian be one of those kids who gets really tired and just wants to lay on the couch and watch cartoons when he is sick? How come I had to get the one who turns hyperactive? Is snot some kind of toddler turbo-boost?

God, I hope he falls asleep soon. I'm cooked.

Making Friends

We met up with some friends from high school and their kids at Chuck E. Cheese-- it is so unreal that we are parents!! Here are Jackson, Lauren, Chase and Ian:
And we also met up with Amy and Stephanie (former coworkers from when I taught at Town and Country Elementary) and their kids. Can you tell that I took this photo at the end of the playdate?!? Here are Ian, Sophia, Chase, Alex, and Samuel:

Lunch with Friends

We had lunch with the Handoga clan- Grandma H, Aunt B, Mike and April. I was a super bad picture taker, so I don't have any pictures of Mike or April...and only one good one of Grandma H and Aunt B!

Ian wasn't really into the photo session- here he is, under the table...and hiding behind a napkin.


Chase wasn't all that into the conversation...he just about fell asleep here on the table.

Grandparents

Grandpa Doug and Grandma Mary met Chase for the first time last week.
He's such a ladies' man already.
Grampa Doug and Chase- both fast asleep.

Funny for the Day

Got this from my mom. Made me smile :)

Happy New Year's!

We had a low-key New Year's Eve with the Wests. The kids went to bed and the grown ups ate chocolate and drank grown-up drinks while Rhiannon kicked our butts in Scene It?.

Here is a fun series of photos that I call "When Will I Ever Learn That It Is Impossible To Get More Than One Child To Look At The Camera At A Time?"

Crazy Cousin Fun

It was awesome to see all the cousins (plus Ty!) together. We were only missing Taylyn (in Colorado- we'll have to catch her sometime soon). I love that they all play together so well.

Wii Love the Wii!

Wii-lly. This is the most wiimarkable gaming system ever!

It was an after Christmas splurge- we weren't going to get one. But it's something that I will play with Bryan- I'm not really a fan of Madden or shoot-em-up games that he has on the other systems. And it's fun for Gaga and Papa, too!

We had my Aunt Sue, Uncle Joe, and their two boys, Ben and Max, over for dinner the night before we left for Florida. After a big pasta dinner, we all burned off the calories with a few rounds of Wii Bowling.


Ian's favorite part: Watching from Max's lap :)

Night Terrors

Poor Ian.

He's woken up 3 times already tonight screaming and crying...talking gibberish, pointing at phantom objects, not focusing on us when we talk to him. I'm pretty sure it's just night terrors, but man, it is scary.

Anyone have any advice?

Back

We made it.

We had a great time in Florida:)

It's nice to be home again, though.

Lots of fun pictures and stories to come...maybe tomorrow. I can't concentrate on anything except my giant pile of laundry and the sad, wilty Christmas decorations that are just soooo last year.

I promise I'll catch up with all my blog reading and commenting this week, too! I've missed you all :)