Tuesday, August 31, 2010

my dollars!

He lost a tooth, you guys. And he must have swallowed it because it's nowhere to be found. I have no idea if he understands that the Tooth Fairy brought this money, but he definitely understands that it is his!

Monday, August 30, 2010

feeling crabby

I have a post to write about our recent trip, which is the reason for my lack of posting, but I left my camera with the photos at my mom and dad's house. And we all know that you need photos of Punkin to complete a story about Punkin. So in the meantime I will leave you with the following annoyance.

Back in April I took Punkin to the hospital while we were visiting family out of state. It was a short visit but of course cost a fortune as all things at the hospital do, and a few months later I started receiving bills. Since I don't receive any explanation of benefits, as I was promised, from his primary insurance that is under his father's name, I assumed that the bills were what was left over after the primary insurance paid and his secondary insurance -- Medicaid -- refused to pay.

I paid small amounts and then finally one day decided to call them to make sure that Medicaid did in fact refuse to pay. Come to find out they didn't have his Medicaid information on file. What they did with the piece of paper I wrote it on I don't know, but that's not a big deal.

So one bill is taken care of, but I keep receiving bills from another place -- it must have be the actual physician and not the hospital. So I called them today and asked them to make sure they had Punkin's Medicaid number and assumed it would be a simple fix. You know what they say about assuming!

Turns out the primary insurance hasn't sent any payment or correspondence back to them, so they can't bill a secondary insurance even if they did have it on file (which they didn't, of course). They told me to call the insurance company and sort things out. Well, the insurance company won't talk to me because I'm not "authorized" and the policy isn't in my name, which is probably why I haven't been receiving any paperwork from them. Because someone (AHEM) chose not to authorize me.

So I called that someone and left a message asking him to please call them and give me permission to speak with the insurance company and to please sign and return the form they're mailing him. And that's the first time in four years I've had the privilege of contacting him. If this turns into a Thing, I don't even know. I might have to take up drinking only because I truly loathe talking on the phone and I envision this requiring a monumental number of calls.

Monday, August 23, 2010

everyone needs purple stripey shoes, right?

pretty sure i just saw a pig fly

Last Thursday I picked up Punkin from school and the aide in his room told me, "He ate a really good lunch. He didn't want the hamburger, he ate the peanut butter and jelly instead."

Woah. Wait. What?

My son? The child who routinely threw furniture on peanut butter and jelly day for the past three years? The one who matured enough last year to simply push his plate away and say, "No want it" but still refused to eat? That kid?

He chose it OVER a hamburger? Okay. Good to know.

Friday, August 20, 2010


All I did was take off my clothes, drag a chair in here, and find the swimsuit you thought you cleverly hid in my bedroom closet. So when are you going to get it for me?

Thursday, August 19, 2010

is mine? is mine swimming suit?

Okay, so we all know that my son is obsessed with swimming. Lately, though, he's driving me to the brink. It isn't just a matter of wanting to wear his swimming suit around the house anymore, it's asking me every 3 and a half minutes, "Swimming? Pool? Go swimming pool? Cold! Brrr!"

Sure, ya, it's cute the first time - maybe even entire first afternoon. By the end of the week, when he asks you to help him put on his swimming suit for the 50 billionth time, it's not as cute.

So I hid the suit. "Where it go?" I would have hidden the flotation devices as well, but he already popped both of those. (Thank goodness for the dollar store.)

He's gone from asking every 3 and a half minutes to asking every 10 minutes now. But since he can't find his swimsuit, he's focused in on some swim diapers under the sink in the bathroom and insists on wearing them from the minute he walks in the door after school. "Biaper? On?" In fact, he is sleeping in one right now. So I hid those, too, as soon as he fell asleep.

What will be next? Because I know better than to think this is over.

Tuesday, August 17, 2010

we love you, billy

Every Christmas Eve as a child my sister and I would run down the stairs in our new Christmas dresses, fight over mirror space in the bathroom, slip on our most uncomfortable shoes (my feet are shaped like extra-wide shoe boxes), and head out the door with my parents and grandparents for the children's Christmas Program at church. On our way out, my Great Uncle Bill would wave goodbye from the couch.

As a child I never really understood Uncle Bill. He confused me because he would repeat the same phrases over and over again. And even when I answered his questions, he would ask me again. Many times I had trouble understanding him. And I didn't always understand why he needed so much help from Grandma and Grandpa.

Uncle Bill had Fragile X. When I learned that Punkin and I have Fragile X as well, I felt like something shifted in my heart. It's the same with my cousin who has FX. Maybe it's because I see Punkin in them, maybe it's because I'm a mom now, or maybe it's because I grew up, but I feel like my love has deepened over time.

One Christmas Eve we came home from the program and excitedly began opening our stockings. Mine was overflowing, but my sister's was nearly empty; this should have been my first clue, I learned years later, that Uncle Bill was a significant part of our Christmas magic every year. It was his job to set out the presents, of course!

And boy did he love presents. "That's all mine. That's all mine. All mine. All those presents. They're all mine." He'd tease me in a husky voice, waving his finger under the tree. "All mine." Actually, maybe he just liked making me mad, "NO, Uncle Bill! They're mine, too!!"

I know a few other things about Uncle Bill: he loved James Bond and Pink Panther, he worked at a newspaper stand and a soda shop in his younger years, and he was very picky about what shoes he wore. I know he played records for the other residents in the Lutheran Home he lived in for the majority of his later life, where he was also known as The Mayor. He told me frequently about the ways he protected his M&Ms from the other residents.

I also know that we spent a solid 45 minutes discussing Father of the Bride one afternoon while he was visiting and boy oh boy did I HUNT for that movie at my parent's house because let me tell you the perseverations do not cease as individuals with Fragile X grow older. Oh no. We NEEDED to watch Father of the Bride. And no, I did not find it. He settled for Adam Sandler. But as soon as it started he asked me if I'd seen Big Mama's House. "No, sorry Uncle Bill. My mom doesn't have that one." He never lost his ability to perseverate OR his sense of humor. You take the good with the bad, I suppose.

He loved his family; it was evident in his face every time we said hello and especially the last time I said goodbye. I bet he puts on a record and dances with the angels until the rest of us can join him.

Thursday, August 12, 2010

was this before or after he dumped water on his portable dvd player?

I've been on the hunt for a Buzz Lightyear that's small and talks; it's harder to find than you might think. Many of them have pop-out wings or karate chop action, but the red button on their chest is useless. USELESS!
I finally found one when Jennie was visiting on Punkin's first day of Kindergarten, so I decided that his first day of school was a good excuse for a present. It was love at first sight. And the funniest part? He's now taken a newfound interest in the Buzz my friend Laura sent him last year because the new Buzz and the old Buzz make TWO Buzzes. We must have pairs of things, you know. The problem? Buzz's wings are detachable. WHO THINKS OF THIS STUFF? Do you know how many times I have reattached those wings? Do you KNOW? Because it's a lot of times.
The smile makes it worth it, though. I'm a sucker for that smile.

Wednesday, August 11, 2010

sure can!

I realize I haven't written about KINDERGARTEN! How could I not update you?? The first day went very well. He was happy to leave me and only had a meltdown during lunch when he couldn't have more food. This is one main problem with moving from eating family style in preschool to eating with scooped out portions in elementary school; we work so hard on manners and using words to ask for more food and then suddenly those skills mean nothing. One day Punkin can have as much as he wants, the next day he is promptly denied. Total nonsense!

Monday went pretty well. Tuesday was harder. Today was hard again. I think it will take time and I think it will require a consistent para to be in there before he feels confident again. The classroom para is on vacation, and they've had substitutes instead.

He loves his teacher, who I feel is an exceptionally hard worker and very willing to adapt to meet his needs. And he sees his classroom and says, "My room!" when we walk down to eat breakfast in the morning, which makes me happy. He's also integrating into the regular education room for center time and doing a good job there. I even peeked in on him today. :) He looked happy. Happy is good.

Long story short, "No Ninernarnen!" has turned into "Sure can!"

Monday, August 9, 2010

lest you think i only embarass my son on this site



Channeling Michael

Posing with one foot in front of the other like they do on the red carpet.
Actually just looks like I have to pee.

Gold for the WIN!

This speaks for itself.

Just in case you didn't catch that, it was my birthday and we stopped for a glass of wine before heading to the mall for shopping. The sparkling wine plus whatever was in the free shot the bartender gave us made my sister and me a little silly. She kept handing me random clothes to try on and my mom humored our little fashion show by snapping pictures. Let me just tell you that I needed assistance in removing most of these outfits from my body. As in, if I dressed this way all the time, I would need a clothing assistant.
We headed to dinner later at The Essen Haus for some German food, and then promptly headed home and passed out. My sister bought me a delicious cake that I'm still eating and I did buy some very nice items when we went shopping courtesy of my mom. It was a fun weekend.

Wednesday, August 4, 2010

major bummer, dude

we are NOT on our way to the pool.
also, check out this blog. it's punkin's preschool teacher -- the one we're leaving tomorrow (sobs into giant sundae reminiscent of home alone). we went to unpack your backpack night, though, and saw the kindergarten room. punkin ran around like a crazy man and we even saw the room he's integrating to -- it's the teacher i was hoping for. she will be a good fit for his personality. hooray!

Monday, August 2, 2010

dear punkin,

You made this for me the first Spring you were in preschool. You were only four months old. I remember wondering why your tiny fingernails had traces of blue and red on them, but being too sleep-deprived to care much.
I love looking at it in the kitchen every day, and thinking of how far you've come and how much you've learned since that first day at only six weeks old.
You've gone from relying on sign language to speaking in full sentences. You are potty-trained. You can tell me what kind of cereal you want. You can identify 14 letters of the alphabet. You are working on writing your name. You can count 5 objects on a good day, 3 when you'd rather not be working. You can play Legos and cars, give me kisses, greet every single person you encounter at the grocery store, say prayers at night, complete a puzzle, and help me read The Very Hungry Caterpillar.
I'm so proud of you that my heart wants to burst. You are the perfect child for me. You make my life better every single day, and you have taught me how to be a more patient and tolerant person. I am so excited for this new journey you are about to embark on, and I know you will soar even further than you have already.
It will be scary at first, especially that first morning, but just remember that the joy we both feel now when I come pick you up from preschool and you say, "I so happy a see you!" will be the same in Kindergarten. I'll try to remember it, too.

Sunday, August 1, 2010

something to think about

I came back to edit this because this video could be rather inflammatory for some people, especially considering the speaker builds his speech by equating using the word retarded and using racial slurs. I have to say that his claim that the intellectually disabled are the most vulnerable people in society and therefore discriminating against them is the worst form of mistreatment, even more than racial discrimination, gave me pause. After listening to his entire speech and considering his points, though, I have to say I agree with his statement.

Those with intellectual disabilities are unable to defend themselves. Even if, for example, Punkin was mistreated and knew it was wrong, would he know what to say and, if necessary, who to report it to and how to report it? I think in most cases he would depend on a third party to not only stand up for himself, but hopefully see what happened and help him communicate that to an authority figure. It's my biggest fear as a mother -- that he'll need me and I won't be there to help.

Whenever I post something about "The R-Word," I have this nagging feeling in the pit of my stomach that I will offend someone or make someone feel bad. I have to let that go. This is important to me, and I hope that those who know me know that I am not attacking anyone's personal character, rather attempting to show that words mean something and we need to consider them carefully.