Monday, July 27, 2009

doctors, doctors, and more doctors

I went to the neurologist today to talk about the whole pressure behind my eye/blurry vision thing that may or may not be occular migraines. Anyway, he suggested having an MRI done as soon as possible and an EEG is scheduled for next Friday. If those both come out fine, then I am a lucky girl who has migraines without any pain! I will probably still consult my eye doctor again, but I'm not sure if my insurance will allow me to see him before October/November. It may classify as a medical need and therefore my regular insurance would cover it before then. Gotta check on that, but I will wait until these other tests are done.

The doctor was super nice, though, and he was excited to meet his very first patient with Fragile X. He knew about FXTAS and seemed to have a basic understanding of things. He's quite the drive from my place, but I liked everyone there enough to put up with it.

Speaking of tests, I found out last week that Punkin needs to have an IQ test done again in order to stay on the Waiver program. The thing is, no IQ test will ever be able to show his true capabilities. For example, if I asked him to count right now, he would say "One, two, four, seven" or on a good day, "One, two, three, four, six, seven, eight, ten." But on Thursday when he was in the giant body-sock-type swing at occupational therapy, he counted to twenty as she bounced him up and down. He only forgot five and eleven.

What I'm saying is that we are both going to have to suffer through IQ testing that isn't accurate and is, in my opinion, completely unecessary. My goal was to only have him evaluated for his IQ or autism by someone who is extremely familiar with Fragile X; guess that's not happening! I just don't get it. His DNA isn't changing -- why would his IQ?

I understand why they need to do this, I just don't like it. And that's that.

Sunday, July 26, 2009

=)

Why is that I can see my stray eyebrow hairs so clearly in my rearview mirror, but they seemingly disappear when I stand in front of my bathroom mirror? THEY CHANGE COLOR, PEOPLE.

Have I told you how much I hate the dentist? Because I hate the dentist. Well, technically I hate the drill and the pokey thing and the smells and the electric toothbrush, not the person behind the instruments. Why do people with anxiety disorders have to have bad teeth? (I know, I know, it is technically possible that I have bad teeth in part due to my aversion to the dentist.) Anyway, something is wrong with my tooth. I'm officially going to have to call tomorrow. Hopefully I can get into the University. Hopefully they have a xanax dispenser.

Speaking of medications, Punkin is doing a much better job taking his in the morning. There is a direct correlation between the attention I draw to the process -- including using a picture schedule -- and the amount of medicine that gets thrown in my face. So if anyone needs a picture schedule for taking medication, I have one all made!

I did make a new schedule for his respite workers, though. We haven't had one since we moved, and things haven't been going very smoothly. Isn't it weird? One schedule is a huge success and one is an epic failure.

Anyway, what I intended to say was that I think both meds are working nicely. Hooray!

Tuesday, July 21, 2009

my kid is weird

ALEEP! In his Body Sox, with his head hanging off the end of his cot.
Fashion statement. Pants under skirts is SO 2008. Pants under khakis? Keepin' it classy. And yes, he's wearing one of my socks and one of his socks.

Sunday, July 19, 2009

what's your favorite part of the day?

Most days, I would say it's picking up Punkin from school. All of the stress and anxiety of the day disappear when I see his face light up and hear, "Mom!" Maybe it's knowing he's safe and happy. Maybe it's knowing someone has been waiting ALL DAY (I MEAN COULD THIS DAY GET ANY LONGER?) to see my face, to be wrapped in my hug, to hold my hand. Or maybe it's because he wants to eat chips and watch a movie.... Nah.

The cry in the middle of the night IS all about needing mommy, though. I remember a specific night as a baby he cried out and I assumed he would need a bottle or a change or just be awake, fussing for a while. But instead, he heard my voice reassure him and my hand touch his tiny frame and he instantly relaxed and returned to rest. It was one of the most empowering moments of my life. He just needs me. That's it. Those moments, and not the ones where he decides to practice karate in my bed for 3 hours, are beyond words. Beyond peaceful, really.

Much like snuggling after a bath. This is the one time that I can guarantee that he will actually cease moving and allow me to cuddle him for longer than 15 seconds. As soon as that towel hits his shoulders, his legs turn to noodles and his arms -- wrapped around my neck -- turn to steel.

I remember trying to soak up those precious moments as a new mom; desperately painting pictures in my mind -- pictures of his head nestled in the crook of my arm, his cheek squished into my sweater, his long fingers clenching a favorite green fleece blanket.

Now, instead of spending afternoons watching him sleep, I spend afternoons watching him think, moving through problem solving, exploration, and even the occasional play scheme. I watch as he runs to my bedroom to retrieve one sock, back to the couch, to his bedroom to retrieve a second sock, and then back to the couch again to try them on, the larger one of the pair stretched all the way to his thighs. He repeats this process at least 12 times before running off to dress himself in a long-sleeved t-shirt and shorts. He hands me my shoes, "Car." It is a declaration, a respectful command, not a question. "No, Punkin." He cries; I grab him and tickle him until his ears turn red.

It's cliche because it's true: the simple things carry me. The peace that flows alongside the worry and confusion and frustration is a priceless gift from God. It's my favorite part of the day.

Wednesday, July 15, 2009

apparently

You know those stepstools people have in their kitchens that have a seat on them? Punkin fell, sideways, off of one of those today while digging through my parents' cabinets for snacks. It landed on his leg, but all he said was, "popcorn?" Then he pulled their 27inch TV out of the entertainment center and while it landed with a thud and broke, the glass didn't shatter and neither did he. Apparently, THE KID IS MADE OF RUBBER.

He is also a delicate creature, as he has deemed it completely unacceptable to wear the same pull-up for longer than a few hours, soiled or not. Therefore, he is currently sleeping in the buff. We talked about wearing a diaper, but he had already tried all of them on and none of them felt right; he threw them in the garbage one by one. I then suggested underwear; he said -- and I quote -- "yucky."

Mr. Punkin has also developed into quite the smarty pants. When it comes to avoiding tasks, such as drinking a dreaded 1oz of Sprite mixed with Zoloft or a BITE OF PEAR (which, by the way, he had eaten half a can of the night before), he knows exactly what buttons to push. His teacher said something to the effect of: I think he tries to be as disgusting and messy as possible in the hopes that we will be so grossed out that we'll change our minds.

I concur, my teacher friend. I concur.

Let's just move through the list. His first tactic is simple and easily ignored -- throwing and/or spilling. Second, he attempts to spit. But he doesn't really know how to spit without liquid in his mouth, so it turns into a pile of saliva bubbles on his bottom lip. Next comes the snot, as in blowing his nose and rubbing the mucus into his pores. Then, the real doozie, the last hurrah -- taking off his diaper and yelling "poopy." And no, he didn't poop on the carpet; he peed.

More sneakily, though, he tries things like taking his Ritalin and then while putting his reward --the M&M -- in his mouth, removing the pill. Or that pear. That dreaded half a bite of pear. His teacher walked away to grab something and he creened his neck around to watch her as he picked up the miniscule chunk of fruit and moved it off his plate. Turkey is the only word I know. TURKEY.

I also agree with his teacher that a body sox might be a good purchase for home. He has gotten used to using one at his private OT and when his teacher offered him one at nap time, he crawled right in with a huge smile. And then ... wait for it ... HE TOOK A NAP.

Oh, and my parents bought a new TV -- an HD -- to replace the broken one. It came, of course, with a remote. Pretty sure they have five now. I will NEVER be able to watch television there without assistance. Never. Apparently Punkin is not the only one who needs a picture schedule....

Tuesday, July 14, 2009

in time, in time

Okay, the Ritalin is definitely helping him slow down and control his impulses. In my experience, though, there's always a week or two where kids who start stimulant meds ride a bit of an emotional rollercoaster until their brains adjust to the idea that the world doesn't, in fact, move as quickly as their bodies used to.

I really still miss the clonidine. He was awake most of the night last night.

And the morning med routine? Well, 45 minutes into it this morning he managed to trash both meds and make me late for work. So, he got out of it. I HATE THAT.

Sigh.

Also, he refuses -- quite vehemently -- to wear underwear. But he's constantly messing with his diaper. Once these meds are regulated, I'm taking the diapers away for good. UGH.

Saturday, July 11, 2009

meds update

Thanks for asking about this, Sarah!

The Zoloft is amazing. It really has helped reduce his self-abusive behaviors. He can give me hugs and kisses, and I do think he is talking more.

The Ritalin I am not so sure about. Give me a week or two.

Right now I am desperately missing his Clonidine at night. It may be something he can have with the other meds, but I want to try to keep his number of prescriptions under control. I don't want to just keep adding things.

So he is taking 2mg Melatonin and 15mg Prevacid at night and 1mL Zoloft and 5mg Ritalin in the morning. Kind of a lot for a little guy....

everything's better in the morning

It's difficult to explain to some how a simple Saturday can be so monumentally exhausting. What's so difficult about going to the store? What's so hard about dropping off a present for a friend? Going out to lunch is fun! Swimming and playing outside is an ideal way to spend time. It must be nice to be able to go wherever and do whatever, whenever you want, with whomever you want. Right? And to only work Monday through Friday, just 7am-2pm?* Wow. That's awesome!

Big. Fat. WRONG.

We know how fun the store can be. Or WIC. Or the doctor. Or a really fun event at a children's museum. Or Mary Poppins in Chicago.

Let's talk about eating out a restaurant. He doesn't sit still, he doesn't use silverware, he is likely to undress completely underneath the table, and he yells. When they're two, it's expected. When they're four and a half and tall enough to be a full five, people tend to stare. Eating out is work.

Now let's talk about walking from the house to the car, much less playing outside for an extended amount of time, and how he runs into the street with absolute abandon. He's even gotten into the habit of leaving Oma's house all by himself -- just waltzing outside on his own. It is downright scary to have a child with no fear.

Oh, and a friend's house? What if they have a dog and he becomes paralyzed with fear, biting his arm until it bruises? What if there's a meltdown and he breaks something? What if they don't understand? What if?

I am tired of people staring at me. I am tired of chasing him. I am tired of telling him not to climb out of the shopping cart while it's moving. I'm tired of explaining to people that, no, it doesn't hurt him to lay upside-down. I'm tired, too, of the evil stares from people when he smacks me or throws things at me in public.

What they don't understand is that just like it is overwhelming to care for a child with FXS, it is difficult to BE a child with a low IQ, poor language skills, hyperarousal, and ADHD.

I'm tired of living paycheck to paycheck but being too afraid to move on because of how it might affect Punkin. I'm tired of depending on the government for SSI checks and not being able to save a dime, lest it be counted as an asset and we lose support entirely. I am tired of knowing that while I honestly want nothing to do with Punkin's father, he was able to just keep on going with his life despite the decisions he made. He can have more kids who aren't developmentally challenged. He can travel without much thought. He can freely pursue his dreams and wait for the child support unit to catch up with him at tax time.

Today, I am TIRED. And I worry every day about whether or not I am making the right decisions with his medications and therapies and behavior management. I worry about the fact that it took 45 minutes for him to drink 1oz of his Zoloft mixture and swallow one pill that I'm not sure is even helping. I wonder if I'm doing enough; I think of all the things that need to be done -- a picture schedule, a bedtime routine, a sensory diet, introducing new foods, opening him up to new experiences -- and pretty soon my head is swimming.

And then I go check on my precious baby. He's blissfully sleeping with a giraffe, zebra, ducky blanket, pink fleece blanket, and Woody doll. I kiss his cheek and my heart breaks with peace and love. I am sad sometimes when I consider the unknown of the future and all of the things I know my brilliant little guy won't be able to do and the way people may treat him. But overall, I am filled with faith in my God, who continues to provide for us and wrap His loving arms around us. The God who makes all the little miracles possible. And I know everything will be okay. How? Because I've seen it work so many times before. Oh, and it's also because after I take the medicine to help me sleep that God inspired some brilliant scientist to create, the morning will be brighter. Everything's better in the morning.



*We all know that parents work full-time; here I am referring to the work we get paid to do. Just wanted to clear that one up. =)

Note: I have to say that my natural inclination before starting this post was to apologize for this post. It's negative, even a bit whiny and self-serving. And obviously I don't know the difficulties of other people's lives; everyone has issues, as do their children, which can make daily life burdensome. But I don't want to apologize. I'm allowed to have a bad day. So I write.

Friday, July 10, 2009

tgif

I think it was midnight before he fell asleep.

I woke up at 7:25am; I am supposed to be at work at 6:50am.

He refused to take the Ritalin, even though it was on a spoon with water just like the million other pills he's taken in his life. This one was in the MORNING and IN ADDITION TO a semi-new routine of taking the Zoloft. It was all too much.

I've been able to bribe him to drink the Zoloft by offering a sausage biscuit (we all know how he loves those....). Today, he dumped out the Zoloft, so I threw the biscuit away. TEARS. SCREAMING. TEARS. (Let's hope he learned something.) In the midst of all the SCREAMING, though, I shoved the spoon with the Ritalin in his mouth.

It was already 8:10am by then, so he got out of the one med, which I hate, but oh well. I don't have an unlimited supply of Zoloft.

THEN, we stepped outside into The Great Rainstorm of July 2009. Sweet mother of Abraham Lincoln. It. Was. Raining.

I got to work at about 8:20am, looking like a drowned rat at a wet t-shirt contest, minus my water bottle, my lunch, and my sanity.

Thursday, July 9, 2009

ah, change

we're off the clonidine and on generic ritalin. i'm a little nervous, and i didn't think we'd get here until kindergarten, but i am also really ready for both of us to have some relief.

bedtime, though, is not going so hot. 90 minutes and counting....

Tuesday, July 7, 2009

cranky mccrankerton

I had to go to Wal-Mart.

Do I really need to write any more? I mean, doesn't that just sum it all up? What could possibly be more fun than dragging my hyperaroused, hyperactive, under-medicated four-year-old through a giant warehouse-style building glaring with the most offensive flourescent lights known to man and bursting with echoes, music, talking, bodies, and stuff? I mean, really. What could POSSIBLY be more fun than THAT?

How about wasting $60 on ink cartridges for a printer that WON'T WORK? GHahankawhg!!

I'll tell you what is amusing, though: watching said four-year-old run down the aisle clinging to a 24-pack of sausage biscuits, yelling, "Ya ya wookum! Dis is! Ya! BURDER!" What's not amusing? When you GET HOME, realize you forgot something important, and have to go BACK to the most hellish place on earth and the four-year-old laughs in your face when he's put in time-out for the 15th time because he won't stop running away. And he KNOWS. It's not the thrill of the sausage patty anymore; this is plain old defiant, crazed running away.

*sigh*

In happier news, this is the best spill-proof, straw sippy cup I've tried. And I've tried a lot. I guess sucking on a straw provides good deep oral pressure and is a good mouth workout, so after being very disappointed by every fancy cup on the planet, I tried this one, and it is awesome. And when I say I tried it, I mean I actually drank out of it. Because sometimes they're too easy and sometimes they're too hard. And sometimes you can't get them clean or they require an engineering degree to assemble. But this is simple and requires just enough effort. And it's cheap (at The Hellish Store previously known as Wal-Mart). It's by Munchkin.





Also, this teether, available from John Deere, is like crack for my Punkin. ToysRUs has a similar one that's in the shape of a star, but I like the shape and the bumpiness of this one a lot. His private Occupational Therapist gave him this last Thursday and the effect was visible; his entire body relaxed. I had planned on going out and getting one during respite, but I ran out of time. Then I planned on getting one with Punkin, but he decided to run sprints at the store. At least he didn't try throwing shotput with the bottles of juice this time. That was almost REALLY messy.