Tuesday, August 28, 2012

Mirror, mirror, on the wall...

"Mommy, do I look the way I look in the mirror?"
"Yes, you do. So I hope you're okay with that."

We are about four days into our Kindergarten schedule. Everything is going well, but I do think, like with anything else, there will be a period of adjustment. Isabella tends to over-dramatize just about everything, and that includes doing worksheets. What she could complete in a matter of minutes, ends up taking her thirty or forty minutes once she gets past all of the whining and complaining. She told me the other day that she "just doesn't like home school Kindergarten, because it's too much work for me." She used to tell me that preschool was too much work for her, so I try to not to worry too much about this sentiment. She's also way too concerned about making mistakes. I think I've learned that it is not the mistake that concerns her, I think it's effort involved in re-doing it that bothers her. So, we have some laziness to contend with.

Otherwise, it's going well, and we're settling into our routine. I think this year will definitely result in more "scheduled" weeks than we've ever had. Which I think will be good for all of us since I don't really like to be a scheduled person, but I think my kids need the structure.

Craft time. Last week we learned about the letter 'm'. This is our "M for Mountain" project. Disclaimer: I didn't make it up, I asked Google for letter crafts and he delivered (assuming Google is a male--that was sexist of me).



 Practicing paying for items with pennies...



Break time.



Time to chase a balloon...


Thursday, August 23, 2012

Wash. Rinse. Repeat.

I desperately wish that I could turn off my mind. I really think that God should have given us each a little switch. Too bad He didn't consult me on that.

I realize it has been almost two weeks since my last post. I wish I could say we've been having fun. But, we haven't. Isaac is so cute when he falls asleep at night. He pulls the covers up to his little chin, and tucks himself in, then wiggles with happiness and looks at me with a big smile. And then, in the blink of an eye, we've slept very little, it's approximately six o'clock a.m. and Isaac is in yet another bad mood. Wash. Rinse. Repeat. That's what my life feels like--except it has nothing to do with washing hair.

People have been asking me repeatedly (see, there's a theme to this post), "why is he crying?", "what's wrong with him", "is he tired....hungry....hurt somewhere--ANYWHERE"...WELL HOW THE BLEEPETY BLEEP, BLEEP DO I KNOW?!

Oh, by the way, if you haven't already caught on, this is an angry post.

Please stop asking me what's wrong with my child. I have no idea. He has about ten doctors, they have no idea. He has four therapists, they have no idea. Maybe one day, when he can actually talk, he'll tell us.

A few nights ago, I asked Walter, if he could wish for one thing, what would it be. He thought about, and came back with some deep, thoughtful response. Mine wasn't deep. In fact, it was quite shallow. I didn't say that I would wish for Isaac to be normal, that I wish he could walk, or talk, or run, or even eat, I just wish he would spend more hours out of each day, happier than unhappy. That's all I wish for.

For all of the readers who need something happy to read, today officially began our journey of homeschooling. That's kind of a lie because we've been working on math since June, but today, we added the rest of the subjects to our schedule. Isabella's phonics lesson was on the letter 'M' and she was supposed to think of an object beginning with the letter 'M', and draw a picture of it:

"What can you think of that starts with the letter 'M' that you want to draw a picture of?"
"Hmmm...I know! A mammal!"

A mammal. Not a mouse, or a muffin, a monster, or hellooo, mommy....a mammal. She's funny.

Some Isabella quotes:

Mommy, Isaac is just like Hello Kitty, he's cute, soft, and cuddly. And mommy, you're just like Barbie, because you're beautiful. 
     -Thankfully, I'm not "just like Barbie" or I'd fall on my face.

I just love, love, LOVE the letter 'P'! 

It's just too much work for me (to do her math work sheet), and then, I feel in my heart, that I want to play with my mp3 player (that Walter found while cleaning some stuff in the basement).

Mommy, why do you have an attitude? You are having the same attitude as daddy about me going to bed.

"No, I don't want to read that story tonight!"
"Why?"
"I don't like that story."
"Since when?"
"Since twenty years ago."


To a stranger: Um, Isaac doesn't actually like when people touch him. It makes him grumpy. 

At a very stressful feeding therapy appointment: I think he just wants you to give him the toy. 
     -Yep

You didn't give me any green paint, so perhaps you could get some for me. 
     -Perhaps.

And the finale, because I couldn't help it, and I really need things to laugh about these days: 

Daddy, that bug probably fell down into the basement just like the spider that was in my room did, and now they're probably making love.

Goodnight. 




Monday, August 13, 2012

Leaving the nest

This week my brother will go off to college. Unfortunately, I can't be there to help him move in and offer a proper send off, which makes me very sad, but we have a chance to meet the family that is paying for all of Isaac's therapy, and it's an opportunity we cannot miss. 

Josh, whether he agrees or not, had the privilege of growing up with three mothers: my mom, my sister, and I. We all bossed him around and told him what he should and shouldn't do. Although, I don't think any one of us bossed him around more than Jesse. He was her slave.

I was ten years old when Josh was born. My sister and I were at his birth, which meant that I missed health class on the day they discussed reproduction for the first time. I'm gonna go out on a limb here and say that viewing a baby being born was a bit more educational.  

Josh was often parked in our room to "play school". He was our student and you'd better believe we made him listen to every word we said. He was left with us while we practiced our instruments and entertained him with our musical talents, or made his head hurt. He accompanied us when shopping for homecoming and prom dresses, and later, a wedding dress. He had to sit through countless band and orchestra concerts, recitals, graduations, etc. He was often sent into the family room to check up on Walter and I. Trust me, he wasn't very discreet about it: "Mom and dad just want to know what you're doing?" 

Jesse with her pupil

Man am I glad dad got a hair cut and new glasses

Josh and I
 Josh and Jesse
 Hmmmm

Mom, are you crying yet?  

 Mom and Josh

Until Josh was born, I was the favorite (I'm totally kidding. At that point Jesse and I were probably neck and neck for first place). Since then, he's trumped all of us. Because he got all A's on his report card one year, he was rewarded with an XBox. Jesse and I were rewarded with a hug. A hug. Don't even get me started on his curfew. He probably even got more mental health days than we did. My dad's a psychologist, he believes in mental health days...it's a day you get to take off from school when you're feeling overwhelmed. You're jealous, aren't you. 

Well, in all honesty, he probably deserves "the favorite award". He's a great guy, how could he not be with two older sisters to boss him around, and he's super smart, and pretty good looking...this is turning into a personal ad for my brother...

Anyway, these are some pictures I took as part of Josh's senior photo shoot. Mom, don't get too excited, I only picked out a few to edit, so they aren't done yet. 


I bet she's crying by now.









 Isabella took this picture, and Josh was told to hold up the star fish...

Good luck, Josh. We'll miss you but we know you'll have tons of fun. And you're only two hours away, so we'll come and bug you plenty of times.

Love,

Sierra, Walter, Isabella, Isaac, and Stella

p.s. All the cool people transfer after their freshman year. ;)


Friday, August 10, 2012

Definite Dysfunction

I was given the write-up from Isaac's OT Evaluation and it sat in my car for a few days, because that's what happens to things that enter my car, they get sucked in and forgotten about. Don't worry, I bring my kids in the house. Last night, after I sifted through some junk, I found the paperwork, along with the information for the parenting class that I'm supposed to "strongly consider" in order to deal with Isaac's behaviors. From a sensory perspective, Isaac is considered "typical" in a couples areas, has "some problems" in a couple other areas, and "DEFINITE DYSFUNCTION" in a few other areas.

I've read a fair amount over the past year about sensory-processing disorders, and guess what? Me, myself, and I, experience definite dysfunction in the area of auditory processing. I'm being a tad facetious here, but to be completely honest, when Walter chews gum, or picks up one of those mints upon leaving a restaurant and I hear his teeth crushing it up on the way home, I want to scream. In an effort to help him become more empathetic toward my dysfunction, I told him a few weeks ago that when he does things like that, eats hard candies, chews gum, makes any sound repeatedly, it feels like tiny worms are crawling across my brain.

I thought that impressing upon him the idea of worms in my brain would make him think twice about that mint--it didn't. My family feels bad for Walter because I make him watch TV at lowest possible volume setting, but I think everyone should try to imagine worms on their brain, and then maybe they would understand.

Don't worry, Isaac. I get it. Maybe when people talk to you, look at you, or God forbid, touch you, maybe then you feel the worms too.

Thursday, August 9, 2012

Walking

Three weeks ago, Isaac stood up and walked across my grandma's couch. Since he's being keeping this skill a secret, we were obviously shocked. So I told him, if you can walk on a couch, you can walk on the floor. After a fair amount of encouraging, nagging, and cheering, he stood up, and took a few steps. Walter said, "how cool will it be when we're in the kitchen, and Isaac comes walking in?" Dude, that will be so cool. (I don't say 'dude', but Sarah does, and it seemed appropriate).

What else is new? We've made some progress in the feeding department. Isaac is now eating, by mouth, about two to four ounces of puree, each day. This all takes a fair amount of bribery, and I have to up the ante with cooler toys each session, but I'll take it, especially since we aren't using the TV as bribery. He gets tired after two ounces, so I try feeding him two times each day, and that is going really well. His mouth is definitely getting stronger and he's working on making new sounds. Did you know, speech and feeding go together? Poor feeding typically results in poor speech. Who knew that those mouth and facial muscles are working so hard all day. I know Isabella's are working extra hard since she doesn't stop talking. Last week Isabella told me that I never talk to her. Right. The last I checked, she talks all day, and I am typically required to respond otherwise, she'll repeat over and over again until I actually respond.

A few other comments from Isabella, "When I'm a mommy, I will never, ever have rules." Tuesday night, she told Walter that she wishes she could live by herself so that she can go to bed whenever she wants. It is so hard to be five. 

We've had some major success with grass! Isaac scooted across the grass with his trusty inner tube.







Walking!


Yo, Stella, did you see that!

I guess he made up with the swing. For about a month, he'd cry when we'd go near it.





Sunday, August 5, 2012

Four days, five appointments...

The only way to summarize last week, is to list Isaac's appointment schedule. Thankfully, not all weeks are like this last one:

Monday: Swallow Study. I was dreading this and assumed it would be horrible for all parties involved. I admit, I'm generally a pessimist, although, Sarah is such an optimist, and I spend so much time with her that she has thankfully rubbed off some of that positivity on to me over the past few years. Anyway...radiology was insistent that Isaac wear a hospital tag. He can't stand those things. Just looking at one makes him mad. I didn't know he'd have to wear one, so I didn't bring a sock to cover it up, and they didn't have hospital socks in radiology and they weren't willing to locate one, so after we left the main desk I pulled it off of his ankle and he was happy. I brought the DVD player, but the battery ran out right before the study was about to start (go me!). We charged it for a few minutes, and it lasted long enough to get a few swallows from the syringe. Isaac loved the barium and defied all of my expectations. Oh, do you want to know what is completely absurd? They told me to bring him hungry. What kind of idiots are in charge of these tests? I mean, really, if the kid was stranded in the desert for days without food or water, I'm 99% sure he wouldn't voluntarily take a drink. I swear, if one of those morons could live with me a for a few days, they wouldn't tell me to bring my orally averse child, hungry.

He passed the swallow study...just like I told everyone he would. My goal is spend the next year weaning off of the feeding tube.

Tuesday: Dentist, for follow-up and cleaning. I really like Isaac's dentist. This appointment went as well as it could. Still nothing to do about his palate until he's six or seven.

Wednesday: GI Appointment. We've wanted Isaac's button changed for the last couple months and were finally able to get it done. As you can imagine, Isaac didn't like having his tube ripped from his stomach only to have a new one quickly shoved back in. Dr. Mahajan was amazed by how well Isaac looks, and asked, "what's your secret?" I told her about his blenderized diet, which she was even more amazed about and said that most parents don't do it because it too hard. Too hard to give your child real food? I get it, formula is easy, convenient (there are still days when he only has formula, due to travel, or when I'm at a wedding because Walter doesn't want to bother with blending food), and you know it will easily go through the pump and then g-tube. But if you really think about, if you consider yourself drinking formula day in and day out, and how that could potentially make you feel, I think you'd opt for real food too. She did check his vitamin levels and ran a full nutrition panel, guess what? Everything was perfect. And now I'm going to pat myself on the back.

Thursday: Mental breakdown, Feeding Therapy, OT Evaluation. So, I was planning to save my mental breakdown for Friday, once all of this madness was over. The entire week I felt like I was hanging on by a thread and constantly on the verge of tears. And then I took Isabella to my parent's house to hang out for the day so that she didn't have to go to two appointments in one day. I saw my mom, and you know how some times, when you see your mom, you can't keep all that you've been trying to keep in, in? Yeah, I lost it. My mom told me to leave the kids and go somewhere until we needed to leave for Isaac's appointment. I sat in a parking lot and cried. Pulled it together, picked up Isaac, and headed to feeding therapy. By the grace of God, he ate from a spoon. That was my gift for the day, and thankfully, I was given that gift because Isaac decided to let his true colors show for the OT Eval. It went something like this:

"Isaac, let's stack a tower! Can you take a turn after I take a turn?"
Isaac sat and stared with his angry eyes, pulling his hair, whipped out his foot and knocked over the tower.
"You're being silly. Let's build a tower!"
Angry eyes, avoiding eye contact aside from an occasional mean side glance. Kicked over tower, and scooted screaming to a different toy to bang his head on it. 
"Look Isaac! I'm going to make a picture, can you make lines like I make lines?"
Angry eyes, pulling hair, grabbed marker and threw it across the room.
Then he was supposed to make horizontal lines...he grabbed the marker, stabbed the paper a few times, then threw it.

So, after an hour we called it quits. At that point he was sitting in a corner pulling his hair, and staring at the floor. She suggested I attend a parenting class to deal with his behavior, and also recommended OT, weekly.

Well, we survived the week. We're all in one piece, though a bit mentally unstable over here.

Next time, pictures of Isaac walking!