Thursday, November 26, 2009

even when

1. I stood staring at Punkin's closet, "He really needs more long-sleeved shirts. This closet is packed with short-sleeves and shirts that are too small. Now, to pull money out of thin air: ready, set, GO! Didn't work AGAIN."

Two days later my mom brought over a bag of clothes from a woman at church.

2. Punkin's shoes were peed on months ago. I washed them, but they retained this odd musty smell no matter what I did. And then last week I put them on him and noticed the sole was literally pulling away from the rest of the shoe. My heart sunk; I didn't want him to wear bad shoes. Not even for a day.

And then I remembered that about a month earlier a coworker had sent some shoes -- brand new -- through school mail. I was sure they would be too big, but I grabbed them and headed out the door to school with him. Once there, we tried them on and sure enough they fit.

3. This past Friday, Punkin's respite worker forgot her purse at our apartment. She called and said she would just come by Saturday morning to pick it up. Well, by 1:00 Saturday her purse was still on my table, and I was annoyed, but the doorbell rang. It was not the respite worker, but a couple from my church with a Thanksgiving Basket. At first I thought, "Now what am I going to do with an 8lb turkey? Should I give it away?"

But I can cook it some other time. Just because it's Thanksgiving turkey doesn't mean I have to use on November 26th. And we can use the meat, veggies, and trimmings for various meals throughout a few weeks.

4. I was curious as to why my landlord hadn't sent me a contract renewal, and at one point it seemed like they thought I had signed a 2-year lease. I remembered signing a one year lease, but got busy with other things and never went and looked. It honestly wasn't a priority as long as they kept letting me live there! Well, I got the lease renewal (at least a month late) yesterday. And while I don't understand why they think they can get away with demanding that I return it to them by December 1,

they are not raising my rent.

Even when I stand and pray out loud in front of my son's closet, a prayer that is mostly just a bunch of ramblings to myself, God is listening. Even when I pray in silence, He listens. Even when I haven't asked yet, He knows what I need. He doesn't always answer the way I want Him to, or the way I think He will, but He listens.

I am thankful this Thanksgiving.

Sunday, November 22, 2009

i missed every single word of the sermon

Whoever found this blog by looking up, "lion doing other lion" . . . okay, GROSS. That's just yucky.

I need to remember that if a meltdown involves, in any way, Punkin destroying something, to get rid of that something before we return to the scene of the crime. For example, in church this morning, I let him rip up his children's bulletin and part of my bulletin before I had him clean up.

Later in the service, he asked for the rest of my bulletin and I said no. He then took it and started hiding his bus underneath it, which made a lot of that wrinkly paper noise and started to destroy it. Wrinkly paper noise during sermon = attention I do not need. So I took it away and told him to hide bus underneath the blanket.

FLIP OUT MUCH?

I tried to calm him right there while he smacked me, and then things just got way too crazy and I had to remove him. I thought for sure he would relax right away once we left because I figured half of the reason for the meltdown was because of his repeated appeals to go home. NOPE.

Snot everywhere. Of all the ways my son chooses to act out and distract me from the task at hand, he has chosen snot rockets.

He asks for blanket. "No, you hit mommy." WHACK. He asks for bus. "No, you hit mommy." WHACK.

He finally calms down enough to ask me to clean up his face and we go back to the sanctuary to retrieve the blanket so he can relax. He relaxes in the hallway for a few minutes and then we return to our seats.

He sees the crinkled bulletin.

"I RUIN IT! I RUIN IT! NO BUS!" I am not exaggerating, the bus flew 80mph and only stopped because it hit a pew (thank goodness not flesh) with a resounding SMACK, and then we had to leave again to a chorus of, "I FROWED IT! NO MORE BUS! I RUIN IT!"

I showed him a new bulletin, after he finished pummelling my face, and explained that it was okay now. "Bus?"

"Ya, talk to me about that one later, buddy."

internets, we have a paper cleanup in the living room

paper cleanup in the living room.

(this is the third round of destruction today. as in we've cleaned it up twice already prior to this.)

Wednesday, November 18, 2009

i'm with him; i hate the dentist, too
























Remember that time I was really worked up about Punkin having to go to the dentist for the first time and it ended up being one of the easiest things we've ever done?

Ya. This was not one of those times.

I mean, I guess it could have been worse. We didn't have to wait at all. He pooped in their toilet. And while his feet DID make contact with the dental hygenist, he did not, to my knowledge, break anything or draw any blood.

You can see from the photo that this place is mad insane. MAD kid-friendly. The entire waiting room is painted like an ocean aquarium. You are inside Finding Nemo. And yes, that is a three-station X-Box 360. Up was playing on the tv. Adult-sized characters line the hallways; tiny ones hang from the ceiling. It. Is. Bonkers.

So you'd think that they'd do more than shove a toothbrush in my son's face, right? No. And you think that I would be with it enough to prevent a She's Coming At Me With A Toothbrush Meltdown, right? No. I totally dropped the ball. I did not stand up for Mr. Punkin in time.

He was in my lap, so I held him down and the hygenist tried to get in his mouth, but he just bit down harder. He lost it and I tried to soothe him. Sometimes at home I can tell him to give the toothbrush a kiss and then he loosens up once he realizes that the bristles aren't going to hurt him. Another hygenist then came over and snottily remarked, "I know it's tough, but you're going to have to hold him down. It HAS to be done."

Well, MA'AM, my son doesn't have to learn to hate the dentist. Because unlike some children, he has a very strong visual memory. And he WILL remember this, LADY. It WILL be worse next time. Better get a hockey mask. That's what I could have said, but I didn't.

Instead I wrapped both legs around him, held both arms down with one arm and used the other arm to hold down his head. It was pretty awful.

The dentist came over a few minutes later and tried to get him to open his mouth. RIIIGGHT. I asked the hygenist to move and had Punkin lay sideways across me so that he could kick his legs all he wanted and not hurt her. He seemed to like this arrangement because he was upside-down and once he realized all he had to do was say, "Ahhh," he was totally fine.

A few minutes later, the dentist told me he doesn't have any cavities and we should try flossing. WERE YOU HERE FOR THE PAST 15 MINUTES? HAVE YOU MET MY CHILD? Dentist, this is Punkin. Punkin, this is Denist. We don't do flossing.

Tuesday, November 17, 2009

well THAT went well

The State, in all its infinite wisdom, demanded that Punkin undergo an IQ test today to determine what level of care he requires and to ensure that he does, in fact, still require a level of care from The State [to maintain his MR Medicaid Waiver].

I know, I know. But he has a genetic disorder. It's in his DNA. He had a blood test. And even if every child with Fragile X is different, he's already undergone IQ testing twice. So he wouldn't require that, right?

Yes, well, apparently that doesn't matter. Because he's turning five soon. And when you turn five, well, magical things might happen. Magical things like your IQ jumping 60 points.

We had to leave school early. AND OH MY GOODNESS HOW EXCITING WAS THIS?? He couldn't contain himself. He ran up, bouncing, BOUNCING, "MOM! I uh justa so uh happy uh see uh you!" Hugs all around! And then to his teacher, "I uh all done now! See you uh morrow!"

The bouncing continued at the psychologist's office, which happened to be the office of my former psychologist (LOVE), and we had a nice mini-reunion. After I signed some papers and he announced, "I POOPED" to the entire waiting room, I changed him and we went back for the test.

The doctor and I talked for a few minutes and then I left the room so that they could work; we both agreed that he would probably be better behaved without me there. Not even five minutes later, she and Punkin walked into the waiting room, "He can't do that test. It's too hard and there's no way he's going to attend to the tasks."

As she looked for a Vineland (an interview with me), she mentioned that the final straw was when he chucked the blocks across her office. I must admit that I chuckled a little when I walked into the room and saw a table set up and a box with a bunch of blocks and a binder inside. I mean, really?

I was picturing toys, honest. I prepped Punkin for this appointment by telling him there would be toys. I should have known better. He's about to be FIVE and all fun apparently goes out the IQ testing window at that age. Geez. So now Punkin is peeved off and restlesss and has to sit while I answer questions about his development for over an hour and a half. I try laying him upside-down on my lap, I try having him watch movies on my phone, I try letting him play with cars, but it's a small office. Objects fly.

It's a problem that no one has been able to solve; IQ tests, specifically for children with autism and Fragile X, are set up to fail. Asking a child with sensory integration disorder, anxiety, social disorder, difficulty processing language, and ADHD to sit at a table across from a stranger and complete random tasks on demand is ridiculous at best. Imagine your most nerve-wracking task and then picture a stranger staring you in the face the entire time. Think you'd do your best?

Tests need to be play-based; they are for young children, but not for older ones (like five year olds??) And please, PLEASE take away the table and chairs. Sit next to my child instead of across from him. Suggest instead of demand. And maybe consider introducing yourself. OH, OH, and maybe you could come to his school or house? That'd be sweet. And could he have some sensory breaks?

Alright, just incorporate all of those things and we'll be good. No problem, right? I know, it's a lot. But I'm pretty sure that Punkin -- who only counted to four today -- would appreciate showing off his actual skills. And it's not her fault and it's not his fault; it is what it is. The tests are set up to be administered in such a way that dooms many special needs kids for failure. I know, though, that regardless of what that piece of paper says, my son is brilliant -- and a joy. A very bouncy, loud, challenging, energetic joy.

Friday, November 13, 2009

the day i felt famous

Jennie introduced me to the site Go Fug Yourself, and it's since become a staple in my afternoon routine of pick-me-ups. Let's just say the authors have a little fun with celebrity fashion. I think the reason the site works so well is that it has the conversational, sarcastic tone of a bunch of text messages that you sent to your friends in between classes. Like, "DID YOU SEE WHAT SHE WAS WEARING? LIKE? ARE YOU KIDDING ME?"
Well, yesterday marked day number six at home. I've had ample time to search the internets looking at gossip sites and whatnot while Punkin monopolized the television, and I spotted a photo of Kellie Pickler at the CMAs on Jezebel.com. Now, it's not that she looked particularly BAD, it's that I didn't in fact know who she was until I read the caption.

See, this is Kellie Pickler:

From Kellie Picker's Fan Site

So, I got brave and wrote an e-mail to The Fug Girls as they affectionately call themselves. I entitled it, "Kellie Pickler, Age 43"

I wrote: I just saw a picture of Kellie at the CMAs. She's supposed to be young and silly and vibrant and boobalicious (in a good way). She looks nice, but she also kinda looks like my mom (if my mom were a country music star).

AND THEY WROTE BACK: Great minds -- I am, in fact, writing exactly that. :)

Because, see, she looked like this:



And then AND THEN I was, of course, making my blog rounds for the 117th time of the day and saw that she posted on the dress and REFERENCED MY E-MAIL. I know, right? I almost died, after I peed myself. Read the post (and all of the Fug Girls' other hilarious antics) here.

Thursday, November 12, 2009

sometimes, you handle things really badly

Remember how I initially took Punkin to the urgent care clinic because I thought his ears and throat hurt? Well, after much discussion via Facebook and one very long stare from Oma, I called Punkin's regular pediatrician about his sad state.

The nurse I spoke with Wednesday night was much more, how do I say it, uh, non-robotic than the one I spoke to on Friday and set up a visit for us today (Thursday). Ah, nice people are so nice.

His pediatrician is so patient with me. SO patient. When I mentioned he'd been exposed to strep, as Punkin stood atop the examination table -- fever free -- ripping paper and tossing it around the room like confetti at a parade, he listened attentively. He assured me that H1N1 can last up to 10 days, that fevers can come and go, that sore throats and occassional vomiting are a symptoms, ect. And then one medical student and I held down Punkin while his doctor did his best to keep all of his fingers intact as he gathered a throat culture.

When he returned, he said, "He has strep. I have to say, I thought it would be negative. Good job, mom." I can't blame his doctor for being skeptical -- he had no high fever, no rash, no outright signs of illness other than sad eyes, poor sleep, and a refusal to eat.

The mystery is, of course, whether or not he had BOTH the Swine Flu and Strep or if he's actually had Strep this whole time and not the flu at all. Either way, he's quite miserable.

That being said, when he woke up crying at 9pm I decided to try to convince him to take some Advil. Riiiggghhht. This is the part where I handled the situation really well. I picked him up out of his bed and brought him out into the living room, TV blaring, lights on, and expected him to happily take a shot of the same orange medicine that he's refused to drink for the past 6 days because it hurts to swallow-- and to do it just upon waking, of course.

In the words of Homer Simpson, "I am so smart. S -M -R -T."

Many bruises to to my ribs and vain pleas to just "Yes! Come on, drink the medicine" later, I plopped him back in his bed so he can wake me up again in a few hours. I was agitated. I wanted my way; I wanted him to take it so he would feel better so he would sleep so I could sleep so I could feel better because I still have bronchitis and I threw my inhaler away because I thought I was better and now I'm not and I'm sick of us being sick!

I went back in his room 45 seconds later, kissed his cheek, and said, "Sorry, buddy. I'm sorry you feel bad."

He was almost asleep, "Okay, mom."



(I threw away my inhaler thinking that I was over the whole "spasming" part of the bronchitis and had used it for its prescribed amount of time. A day and a half later, not so much over the spasms. I called the doctor and she prescribed another one; my insurance doesn't want to pay for it. Jerks. Seriously. Who has bronchitis for 6 weeks? Also, why did I throw it away? WHY?)

Wednesday, November 11, 2009

the sad: i haz it

No fever, but he's still not quite himself. This will end someday, right? Right?

Monday, November 9, 2009

tamiflu is kicking butt and taking names

I'm afraid to write that we're on the upswing of this H1N1 thing, but today was fever-free. He still has that sad, glazed look about his eyes and a congested sound in his voice, but other than the time I had to clean up chocolatey projectile vomit off the refridgerator, he doesn't seem to have any glaring signs of illness.

In fact, he's acting a lot like a cat:

5:30am Climb in bed with mom

5:31am Get in her face to say hi

5:32am pretend you are going back to sleep

5:35am Ask for food

5:36am Ask for food

5:40am Demand entertainment

6:00am Scuttle off to retrieve a ball

6:01am Rest

6:10am Chase ball around living room

6:25am Climb on top of mom to look out window

6:30am Rest

6:40am Ask for food

7:00am Demand entertainment

You see where this is going, yes? I had to give him his ritalin to make him rest. I mean, it's probably best for him to have it every day anyway, but you'd think he wouldn't actually NEED it since he has The Virus of The Decade and all. The Tamiflu is working! And my child has a wacked-out sensory system.

I hope we're able to return to our normal lives soon for many reasons, the biggest being that while I have well over a month of paid sick leave available to me, I am unable to use it when my child is ill. The other reason? My butt is conforming to the shape of the couch. Or maybe it's the couch that's taking on the shape of my butt. Either way, things are flattening out and it ain't pretty.

Update: 11/10 I just gave him 1/2 a melatonin and sent him to bed. He's pretty lethargic. I swear he has a fever, but the thermometer says he doesn't. I hope I don't regret him napping. I'm going to regret him napping, aren't I?

Saturday, November 7, 2009

but that's what he said

Punkin had a glassy look in his eyes around 4pm, so I took his temperature. I have a forehead thermometer that drives me nutty. It read his temperature as everything from 97.4 to 104. My guess, based on experience, was that it was around 101.5. Very scientific.

I assumed it was his ears or his throat, which seemed to be bothering him. I called his pediatrician and the nurse told me that I needed to let him be sick for a few days and then call back. She said it was most likely viral and that if I gave him motrin and his ears or throat REALLY hurt, he would still be uncomfortable and let me know. I do not understand this logic.

So I waited and festered and called my mom and vented to her even though she is on a tropical paradise vacation.

And then I took him to urgent care. Because I figured it was his ears and I saw no reason for him to suffer all weekend and then have us both miss school on Monday when we could get antibiotics today and then be good to go by Sunday morning.

We got in right away because it was almost closing time and the doctor was ridiculously nice. I mean, finding stickers behind Punkin's ears nice. Cheesy nice. It was comical, and mostly lost on Punkin. I mean, he appreciated the personality and the effort, but the actual content of his words was lost.

Anyway, he started his sentence, "There's no ear infection, no throat infection, no nasal drainage..." and I thought it would end, "so you'll just have to wait it out." It never occurred to me that he would say, "So we have to assume that it's The Virus."

As in H1N1. And then he said something about medically fragile people and Punkin being young and his X being fragile and so he could get Tamiflu prescribed. And I felt really silly for never seriously considering that my son might have the flu.

On the way back from the pharmacy, he was shivering and I was just so thankful for that nice doctor and for the people who make Tamaflu and for God nudging me in my craziness to take him to urgent care.

I kept panicking all night, waking up in a start worrying about him since he refused to take any more advil. So I went and slept in his -- very comfy -- big bed with him.

It was a massive undertaking to get him to take that first dose of Tamiflu, but he's doing much better today. He still refuses to take any pain medication. I'm not pushing it as his fever is right around 99.5 (as best as my thermometer can tell me).

We're supposed to keep kids home an extra 24 hours after symptoms are gone, so we're definitely missing school on Monday anyway. But hopefully he'll be ready for Special Olympics Play Day on Tuesday. =) We'll see.

Meanwhile, I'm trying not to be depressed about the fact that I'm supposed to be visiting Lion (who lives in NEW YORK CITY AS IN LIGHT YEARS AWAY FROM ME) today at our college (AS IN ONE HOUR AWAY). Good thing I never told Punkin we were going swimming....

Update: Punkin's fever spiked again. I have a feeling we'll be riding a rollercoaster for a while. He's eating, though.

Wednesday, November 4, 2009

*hangs head sheepishly*

I was tagging my posts and I ran into this one. I'm going to share the important part with you and then I'm going back to sleep. The doctor finally heard what I've been complaining about and diagnosed me with bronchitis again. She says I am having spasms in my lungs rather than wheezing. I have steroids, an inhaler, and antibiotics for my ear (and maybe my sinuses as this morning they began producing something rather unspeakable). Anyway, laugh away:

1. My favorite episode of Spongebob Squarepants is on right now. We usually don't watch it, but I was in the mood. Anyway, this jerk comes into the Krusty Krab and accuses Spongebob of forgetting to put a pickle on his Krabby Patty. This unsettling news rattles Spongebob to an even deeper level of stupidity; it renders him completely unable to assemble a Krabby Patty correctly. He stands at the counter repeating the steps in the wrong order, "Ketchup, bun, tomato, burger, bun, mustard, lettuce...." It continues at home, where he can't remember how to tuck himself in at night, "Sheet, Spongebob, mattress, blanket." Eventually he regains his confidence and Bikini Bottom returns to normal. (Oct. 2008)

Monday, November 2, 2009

easing the anxiety

video

I adapted a strategy from Punkin's teacher the other day to trick him into working on puzzles. The one he's working on here is easy for him, aside from getting the pieces themselves in at times. And I videotaped the end of our little session, so he's not quite as focused as he was at the beginning, but it gives you an idea of a different approach you can use with kids who have oppositional behavior, autism, no attention span, or anxiety. In Punkin's case, I think it works because it's more like play -- it takes the pressure off of him and focuses on something he likes, the bus, which he gets to HOLD IN HIS HAND THE WHOLE TIME.

Did I mention that puzzles are his LEAST favorite activity?

Did I mention that bus doesn't know the way to the potty? I tried that already.

His teacher's approach was to ask Punkin's Woody doll the answers to a series of test questions rather than asking Punkin himself. He earned 7 more points on the test than when he completed the test with her (without Woody) the day before! What a smart lady. Now, how do we word that in the IEP?????

Sunday, November 1, 2009

this is what people don't tell you about having babies

In the past 4 and 1/2 years, my bladder control has declined markedly from my pre-mommy days. In the past 5 weeks, I have nearly peed my pants every day from coughing, even when I don't know I have to go, you know? And then the chiropractor tells me to bend my knees when I cough to protect my back. You know what this creates? A very real potential for a waterfall, that's what. That lady who birthed 18 babies HAS to be wearing a diaper.

You know what else I've learned? I really should have started labeling my posts back when I started this blog. I have 544 posts with no tags. Makes it a teensy bit tricky for anyone, including me, to find anything. I've spent much of today tagging my posts and will continue to do so until they're all labeled. That way the Google search tool and the BlogHer search tool along the left-hand side will be more useful if, say, you want to know about our experiences with ritalin or night terrors.

Can't say I'm really sure how to label this post, though, other than "photos." Maybe, "literal" or "hasn't learned size awareness" or "practicing to be an extra in Honey I Shrunk the Kids IV: Living in the Little People House."


We talked about it. I showed him that Mickey was really better suited for the job, and he finally relented.