Wednesday, March 30, 2011


3/29/11 School Report - Speech: What ?'s with pictures - good job today. Worked on "no", greetings. Loves singing Brown Bear song & Twinkle.

3/30/11 School Report - General note: Nikko was helper today, with minimal prompting. He said "[name] go play," after a first model. He used "I don't know" on his own twice, too!"
OT: Not a very good session at first. Refusing to say "I want_____" when grabbing for toys. Got very mad. Finally distracted him to another activity. Then worked on drawing & cutting. At end of session, was OK.

I emailed the OT in agreement regarding the I Want. He's been resisting it all week, despite being in a good mood. In fact, the good mood has lasted a long time but is also accompanied by lots of unfocused-ness. It's apparent in all his ABA sessions. Don't know if it happens at school all the time.

I mentioned this "unfocus" to Lisa the ST this morning before Nikko's session and she said that getting OT could really be beneficial to Nikko in this area. He could learn how to self-regulate and/or receive the input that would then help him organize his body to focus and work. I inquired about our summer schedule and she was in agreement that if we had to shuffle/reduce therapies, it would be beneficial to have ST and OT if we could swing it, especially OT. Regarding focus, Lisa pointed out that Nikko needed a lot of sensory breaks, and was probably getting restless from sitting for so long. This makes me think about ABA, where he is required to sit and do drills. He gets breaks in ABA, too, but maybe he's not getting enough breaks in his session. After a while, he may be sitting there and following the drills by rote, can even imitate what's being said, but Lisa questioned how much he is truly LEARNING and retaining. Lisa had an opportunity to be in a room with Nikko and the head of OT at the facility. Lisa pointed out that Nikko was trying to get OT, and the head OT person said the list was long but they'd really try to move on it. I'm glad Lisa pointed out Nikko specifically. When discussing the swing and his aversion to it, the OT said that perhaps it wasn't that he didn't like the swing (since today he actually tried it out and let Lisa push him a bit), but that maybe he wasn't used to being on a swing often and needed more experience and exposure to swings.

I've got to ask Karen on Friday her opinion on the "I Want" stuff.

Tuesday, March 29, 2011

Lost at Target

We needed to go to Target today to get groceries and some random file folders so I packed up the three kids for an excursion. It felt great to push the shopping cart with the boys walking on their own right behind me with Audrey in the cart before me. Nikko was dragging his feet looking at things around him but managed to keep up. I turned into the athletic clothing section for a quick browse before heading to the produce aisle while Ronin was darting in between clothing racks. Suddenly I heard a faint whining that was coming over the other side of a partition. I realized that Nikko must have been distracted and didn't see me turn into another section, then discovered that he couldn't find me at all. I called out to him and thought he'd emerge on the other side of the partition, but it extended even further than I thought, blocked by other clothing racks. I could hear Nikko's whine turn into panic so I turned to Ronin and ordered him to stay with Audrey and the cart. I walked quickly off toward the front of the store, calling to Nikko and trying to pinpoint his crying. I saw Nikko dart toward the check-out lanes. He couldn't hear me over his guttural cries so I had to put on the speed and caught him by the coat collar about 30 feet away from the exit. He was teary and red, so I took his hand and gave him some reassuring strokes telling him that he was ok, let's go back to Ronin and Audrey. I was nervous walking back, hoping that no one tried to take my other two kids, and was relieved to see Ronin standing right next to the cart.

*Heavy sigh*
Sometimes I think I have absolutely no business having three kids. It's getting increasingly difficult to take them on a simple grocery trip without negotiating lollipops with Nikko or toys with the other two, and not knowing which kid is going to grace me with a tantrum is like Russian roulette. When I think about the ramifications of this afternoon, I get really mad at myself. Here's Nikko, lost in a store and TOTALLY UNABLE to say his name, or mine for that matter, or call for help. There's 1.5 years of ABA for you. :P He's not a bolter anymore, he was just scared that I was nowhere to be found and probably ran toward the exit because it looked familiar. What if he managed to run out of the store into the parking lot? And to top this all off, I had a two and three-year old that I had to abandon briefly to chase after Nikko. What if Ronin started running after me and got lost as well? What if some sicko saw my situation and decided to take one of my kids while I ran after Nikko? I can't avoid going out in public with all three kids, but the variables that could happen while we are out are starting to paralyze me with fear. I can't always get someone to watch the kids while I go grocery shopping, that's not even the point. I feel like just when things are supposed to be more comfortable with all three kids walking and [at least two of them, not Nikko] talking, something like this happens that pulls the rug out from under me, showing me that I have no business taking three little kids to a store if I can't make sure they are all safe and within eyesight. What really rattles me is that I had to leave two kids behind to chase the third, couldn't even give it a second thought in the moment for fear that Nikko was running somewhere, unable to communicate. Who does that??

Monday, March 28, 2011

Double duty outing

Today was a busy day from the start. We went to my SIL's house for a family brunch. The kids were excited to play with their cousins and did very well considering they were playing with toys that would not come home with them. I saw Audrey getting very attached to a Woody doll talking to a Jessie doll, but when the time came to relinquish the dolls she said, "Oh, OK." and dropped them easily. Nikko was carrying around two DVD covers and darting from room to room. He was in the kitchen a lot hanging around me to see what I would be eating. When we had to leave, I was relieved that this time he didn't throw a huge fuss when told to say good-bye to the DVDs.

There was a moment when I was putting away something in my backpack when I saw all the kids in the living room, play and chattering with my SIL's in-laws sitting on the couch. I watched Maya and Ronin pushing cars off the table and laughing heartily. I saw Audrey sitting with the dolls making them talk to each other. Rex was also fiddling with a toy that I can't remember. And Nikko was flopping around on the carpet clutching the two DVDs, sometimes looking up at the ceiling and sometimes looking at the kids in action. He was mumbling jibberish the entire time. It bothered me to see Nikko stand out, clearly the oldest and the tallest of the cousins, but acting as if he didn't care about a single soul in the room and making indiscernible vocalizations. For a fleeting moment I wondered what the other people who didn't know Nikko were thinking.

We came home for a short recharge and then headed back out to Atz's place to celebrate the March birthdays. Nikko went back and forth from the upstairs with me to the basement where a few toy houses were. All the kids did well but I think by dinnertime for the adults Nikko was getting cranky. He was playing with the butter dish until I pushed it away from him and that set him off. He tantrummed in the hallway for a few minutes until Atz brought over a Tootsie Roll lollipop that placated him. But prior to that, Nikko was doing his tea kettle whining and I was losing my patience because I was tired, hungry and couldn't figure out what the heck he wanted. I hate that I was getting loud and irritable myself, but thankful that the lollipop was distracting enough. I should have factored in that Nikko could have been tired from a long day (and only one car nap).

Saturday, March 26, 2011

Making him talk / THE CLEANSE

This afternoon I took the kids back to Mom's house for a few hours. She was sending things home to the Philippines and I had given her a slew of girls' baby clothing. Again, Ronin and Audrey took off to play in the basement while Nikko hung around me upstairs, eating peaches. He caught sight of some leftover chocolate (Kit Kat and Twix) and made a beeline for it. This is where I took the opportunity to get him to say "I want candy please." Either myself or Chinny would hold up the chocolate bar and do the prompting. Nikko was furious. He didn't want to say WANT. But we both kept tryin to entice him. Mom was watching and found it painful. I totally sympathize with her outlook because it looks like I'm just being mean to Nikko. But it is very evident to any parent whose child has a speech delay or is non-verbal that if you want your kid to talk, they have to say what you want them to say, and that means holding out on a reinforcer until he says the desired word. Nikko and I battled it out for 20 minutes until he ended up saying WANT. He even had some success with Chinny doing the hold-out. But she and I were in agreement that when Nikko goes to Kindergarten, he will have to ask for things appropriately instead of expect for things to be granted to him. I felt bad that Nikko was using his high-pitched tea kettle screech, plus thrashing and throwing his head back in angst, but it also felt like a big show and I didn't want him to get away with his theatrics. Ultimately I had to calm him down from his frenzy, even speak lowly, and that helped to get a WANT out of him.

One other thing to note tonight.... by the way, ********TMI ALERT*********TMI ALERT******** I told my mom this afternoon that I was distraught about Nikko's mineral oil situation. I just don't know what the next steps would be, beyond lowering his dosage. "It's not supposed to be like this," I recall telling her, referring to his leakage and the constant diaper changes throughout the day. This evening toward the end of dinner I noticed Nikko getting up and leaving the room. When I tracked him down, he was standing next to the speaker stands in the living room, grimacing and straining and obviously having a bowel movement. When I changed his diaper, he had taken a really big dump of a peanut buttery consistency. Strangely, it didn't stink as bad as his poopy diapers have smelled all week long. After changing him, I saw in a few minutes that he didn't finish his business and so I found myself changing him again. This next diaper held another big volume of poop, and I figured out that this must be THE CLEANSE that the gastro mentioned might be backing up in him. There was one other diaper in between this change and the next that had a tiny amount of poop, but the very last diaper before bath time had another big volume of poop but was lighter in color, kind of fibrous, and iffy on the stink factor. Again, my assumption here is that Nikko finally cleaned out his bowels. But if so, then what next? That will be my question for the gastro when I call her, again, on Monday morning.

Friday, March 25, 2011

Who taught him that?

Spent two hours at Meijer with the kids. I had grocery shopping to do, but in order to ensure success I had to make sure these kids were happy. That's what going to the toy aisle was for. And for the most part, it worked. Sure, they picked up a hot wheels track, a couple of cars, a mini dump truck, a Play Doh ice cream station, and a mini Disney Belle figurine, but I got the shopping done with all three. That's what it takes, for now.

This evening, while Denis was giving Ronin a bath, I had brushed Nikko's teeth and was helping him up the step stool to sit on the toilet. He looked at the yellow cylinder on top of the toilet tank and mumbled something. I pointed to it and asked him what it was.

"Wipes," he stated.

"Good job, Nikko, they're wipes," I replied.

And then he said in his slightly broken, Nikko way, "Clorox disinfecting wipes."

Did I just hear him say that? I was able to get him to repeat it once or twice, then I lost his attention, but I was flabbergasted. Who taught him how to say that?? Did he READ the container? Not likely, but still... I haven't even said "Clorox disinfecting wipes" in an entire sentence in recent memory. I was truly, truly amazed.

Thursday, March 24, 2011

ABA/ Juggling

Yesterday we went to Mom's house for a visit. While Ronin and Audrey trekked downstairs to play with the Thomas trains, Nikko hung out with me and the folks in the dining room. He ate a Cutie orange and a banana, but only because he didn't immediately see the mini-Kit Kats on the speaker table. All the kids behaved rather well and I was glad to give them a change of scenery during their spring break. Nikko's session earlier that morning with Kathy was good except for the usual focus issues and a few unexpected crying fits. She wasn't sure why he burst into tears over something, and seeing him in an angry element seems to take her aback. Kathy remarked that Nikko seemed even bored during some of the drills.

This afternoon, Nikko's therapy session with Rebecca was also deemed good except for an outburst toward the end of the session because he thought they were finished when they really weren't. Rebecca doesn't seem taken aback when Nikko has outbursts, but I can tell she doesn't like them either. Rebecca also voiced whether or not Jenna was coming to evaluate Nikko, and I said she was coming on Monday. Rebecca said she wasn't entirely sure what Nikko "knows" or which drills he has mastered because he doesn't consistently do the things with her that he does with the others. Great.

I am at that pre-summer planning crossroads where I have to figure out what Nikko should do over the summer. He will definitely participate with ESY right after school ends. We are also leaning toward putting Nikko into a day camp 3x/week for 5.5 hours through the NWSRA. I feel more comfortable with that idea because they will have staff trained specifically on autism and how to best deal with Nikko. The hard decisions surround continuing private speech, ABA and possibly adding OT (at the recommendation of Lisa). Of course, this all costs money. So the balancing act begins. I have my calendar printed out, now I need to crunch the numbers and figure out the headache of this planning. And what am I going to do with Ronin and Audrey this summer? I have to consider that if Nikko does back-to-back therapies at Arlington Pediatric Therapy, it will be very unfair for the other two. And can I even put either of them in classes with Nikko's schedule taking priority? The guilt is creeping in fast.

Monday, March 21, 2011

I. Want. Cereal. Please.

3/18/11 School Report - Speech: "Hi" to people in office. Pictures "is this ___?" Good NO - labels person/object. When YES, Trying to get "Yes." Imitated a few "yes." Worked on turn taking & requesting.

Sorry, am a few days behind. On Saturday night, Denis took me to see Lea Salonga in concert. My parents came over to play w/the kids, give them dinner, then put them to bed. I am deeply indebted to them for their time. My mom missed my kiddos so she enjoyed the interaction, and the kids missed seeing them as well. I texted with Mom throughout the night and found out that Nikko fell asleep for a nap around 6p. This caused him to stay up late. When I walked into the door at 11:30p Nikko came running from the living room to greet me. He seemed energetic and not tired at all. After my parents left I put him to bed and he went willingly. He only slept until 7:30a the next morning [today] and didn't nap all day so I wonder if his sleep tonight will be extremely deep or if he'll wake up late tomorrow morning. This didn't affect his mood all day, surprisingly. I was crabby myself because the concert was at The Venue at The Horseshoe Casino in Hammond, Indiana (right over the Illinois border) and when we walked into the place, I was immediately hit in the face with waves of cigarette smoke. Smoking is banned from many public places in Illinois, but Indiana doesn't have that luxury. By the end of the night my eyes were burning, we both had headaches and I reeked of smoke. My morning started with really dry eyes and a sluggishness that demanded a nap wherever I could fit one in.

Today, Nikko took an interest in sitting at the kitchen table to play Fruit Ninja on the iPod Touch. Ronin has mainly been the iPod hog as of late, showing his mastery of the finger-swiping game as well as others, while Nikko has played Skee Ball from time to time. I watched Nikko use one finger to swipe at the fruit with slow strokes. I took his hand and tried to guide him for a few games but then left him to his own devices. When I checked back with Nikko a few minutes later, I saw that Nikko had modified his playing style and maximized the number of fruit being swiped by using the fingers on both hands to make bear-claw swipes at the fruit. How clever! The only problem is that there are also bombs launched in the air amongst the fruit and the bear-claw swipe doesn't discriminate. Nikko hit a few and lost, but he was generally entertained for a long time with Fruit Ninja.

Backtracking again to Saturday... In the morning during breakfast, Nikko had a small bowl of Yogurt-covered strawberry Cheerios, a new flavor that I love, in addition to Nikko and Audrey. Nikko wanted more cereal and said, "Cereal." Or he'd say "Strawberry cereal." But today [Saturday] I wanted him to say either "I want cereal [please]" or "Want cereal." And so I began the task of modelling the words for him. Nikko caught on that I wanted something from him and he started whining. He chanted "cereal" and got agitated that I didn't give it to him when he said it. I signed "I. Want. Cereal. Please." and verbally prompted him. He didn't want to say WANT. I have no idea why, no idea why he didn't want to repeat a word I was requesting him to say. It irritated me a little bit because I feel that I have become complacent in requiring Nikko to properly request something. I think what motivated me to demand the WANT was the thought that in Kindergarten next year, he will need to ask for things appropriately. I need to require this from Nikko NOW. And so the minutes dragged on with Nikko protesting, demanding CEREAL that I wouldn't give to him without saying WANT or I WANT. We had reached and passed that familiar point of no return where if I gave in to him, my persistence and determination to get the WANT would have been in vain. I couldn't back down.

And finally, he shrieked "WAAAANT!!!"

I praised him for it, asking him to repeat it or a derivation of it again, but I made it clear that I was happy he said what I asked of him. He got his refill of cereal. I wondered how long it would take for him to say it again when the bowl was empty. And so when he finished his bowl, he got up and asked me for cereal.

"I want cereal, please," I said, and began to prompt, "I..."

Nikko quickly and quietly said, "Want...[and then loudly] CEREAL PLEASE!"

That took maybe fifteen seconds instead of fifteen minutes. Good job, Nikko.

Friday, March 18, 2011

Hot Rod

3/17/11 School Report - OT: Worked with Nikko at centers (cut, glue barn) then pulled Nikko & he did animal walks, trampoline and worked on name & person drawing.

This evening Denis was running out to pick up some food and told Ronin he could come along. Ronin had a purple hot rod car and misplaced it in the flurry of putting on his jacket. Ronin couldn't find it, started getting adamant about bringing it, and was whining, "I want my hot rod caaaaaaar!"

Nikko was sitting at the kitchen table, seemingly oblivious to the melee, but then he turned to Ronin with a green school bus (also considered a hot rod because the green paint was sparkly), gave it to Ronin and said, "Hot rod?"

Ronin looked at it for a few seconds and then said, "Oh, OK."

I was surprised and asked Ronin if he was ok with the bus. Ronin said, "Yeah, it's a hot rod." I was doubly surprised that Nikko showed a brief instance of sympathy for his whining brother. I have seen such a thing happen once before when Audrey was crying over a toy that I've long since forgotten. It's too bad these siblings don't share their toys more often because these flashes of sympathy would greatly improve the positive temperature in our house!

Wednesday, March 16, 2011

Gastro update

3/15/11 School Report - Speech: Greetings, association puzzles, where/what ?'s with pictures. Finding teacher pictures [good], no no no teacher names.

I'm still a tad behind on the blog. On Monday (yesterday) I took Nikko to see Dr. Nelson. It has been one month since the last visit. I told her that we've been on the mineral oil only a week so I'm waiting to see a pattern. He had only pee diapers but a poop smear at day's end for three days, and then the poop smears got more solid and increased inconsistently over the weekend. We are down to about four poop smears a day. The doc said that since we weren't at goal yet, we could increase the dosage by a half tablespoon and see what happens. Goal is 1-2 BMs of considerable volume. I had some questions to ask her as well:

Could she remind me what the health concerns were regarding mineral oil? - If ingested incorrectly, like while laying down at night, the oil could get into his lungs. Bad problem.

Can Nikko use probiotics? - Her answer was she doesn't recommend it, but it doesn't bother her either. She said that probiotics aren't really proven to help most kids. She didn't see a difference whether or not a kid used them. NOTE: A tiny red flag waved in the back of my brain. If she doesn't recommend them, then why on my last visit, where we waited half an hour because they were running late so I got bored and rummaged through a cabinet, did I see boxes of Align, a probiotic? If she is a gastro (read: gut) doctor, wouldn't something like probiotics be right up her alley?

What is the plan, once he settles into a regular BM pattern on mineral oil? - Then we stay the course for a couple of months, then wean him off of it while adding fiber back into his diet.

What is the plan if it doesn't work? What is the next thing to try? - She said we would probably tweak his dosage until it worked. I asked if there was something beyond mineral oil and she looked at me saying, "Well, those are the three medicines I use in this practice." I don't think I got as complete an answer I was looking for, but maybe tweaking the dosage was her answer and that's all I got.

In a week I will call her with Nikko's progress, so for now I'll up the dosage and see what happens. I have mixed feelings about mineral oil, but currently I can see that *something* is happening. Nikko's BMs are becoming slightly more formed, sometimes fibrous depending on what he ate, sometimes peanut buttery, but never like a rock. And we have gone down from 10+ smears a day to 3-4 poop smears of varying volume a day. That's progress in a sense. What I wish I didn't have to do is pour 1 1/2 tablespoons of oil into Nikko's juice every morning. My comfort is that the juice is really good-tasting apple juice, and mineral oil is odorless and tasteless. I hope he really doesn't notice the oil floating around in his sippy cup. And yes, I have to give it to him in a sippy because it's enclosed and he can drink from a straw. Giving him meds in an open cup means he can see what's floating around and will most likely reject the drink.

The one thing I'm happy to report is that there are little to no more room-clearing bouts of gassiness.

Tuesday, March 15, 2011

Enchanted Castle

On Saturday, we took the kids on a little trip to meet up with a volleyball friend of ours at Enchanted Castle. I know it was a risk because that place is basically sensory overload, but we figured the kids would have fun amid the video games, toddler rides, flashing lights, loud booping noises and families galore. That's basically what we came across. My sister was able to meet up with us and that helped me out a TON. What I thought was neat was the real-life skee ball stations that I pointed out to Nikko. He tugged me toward them, saying Skee Ball, and I tried to teach him how to roll-flick the weighted plastic ball up the lane and end up in a hole. It was so evident that Nikko lacked the muscle strength to roll that ball with one arm. I saw Ronin take a turn and since he's only 3 years old with toothpick arms I didn't expect much. Ronin gave up easily and went on to flashier games. Still, Nikko went back to skee ball twice and seemed to make a connection that this game was the same as the one on my iPod Touch, yet different.

The kids handled all the crazy stimuli pretty well but Ronin was getting a bit hyper. One thing I didn't bank on was the smell of pizza from a nearby table when we stopped for a snack break. Nikko smelled and saw a pizza at the next table and started whining. I was hungry, too, but knew we didn't have the time or the patience to stand in line to order any. I had to distract him with Oreos and lollipops. Finally, removing the kids from that room was the best strategy. Nikko was curious about other video games. I sat with him and tried a Sponge Bob driving game, but other games he was only an observer. Other than that, our experience at Enchanted Castle was a pleasant one for the kids but definitely not an outing I can make going solo.

Saturday, March 12, 2011

Two rascals

3/11/11 School Report - Speech: Greetings in office, where ?s with pictures, great with teacher pix on wall - Is This_____? he would say "no" really loudly - [if] it was the person he would say their name. Did it for 5 teachers and did it for Rnin in the hall by their classroom!
Bathroom: @3:15pm Nikko had gas and pushed for couple of minutes, smeared poop in diaper, sat him on toilet.

A global note: Early this morning there was an earthquake registered at 8.9 that rocked the Pacific near Japan. It spurned tsunami waves that crashed onto Japanese shores and caused hundreds of deaths and lots of destruction. Other neighboring islands were effected by six-foot waves and lots of panic. I saw some of the footage on CNN and it is surreal. From the aerial view it looks like water rolling across fields in slow motion, except this water has houses, boats, cars and debris. The water rolls into cities and you realize that if you were on the ground, this water is moving incredibly fast. Tsunami.

Nikko didn't wake up with a bloody nose today, thankfully. But he still had residual blood crusted in his nose so I took it upon myself to manually get at him with the tissue. He was pretty pissed at me for restraining him and showed it by boycotting breakfast. I honestly think he was mad at me, and it took a while for him to look at me without trepidation. We had speech this morning with Karen and I had to warn her about his coughing. Nikko didn't have a temperature any more and the hacking has gone down enough that I think he can manage in school without getting looks from other kids. He seemed to have a good speech session. The problem wasn't him this morning: it was Audrey and Ronin. They were so excited to see Tyler, the Kindergarten boy that goes to Westbrook that Ronin recognized two times before, that both kiddos started running around and playing chase with Tyler. They were also getting noisy, plus there were more parents and kids coming into this small lobby to wait for their therapists. I was getting super annoyed at my kids, trying to reign them in, shush them, threaten that they wouldn't get lollipops. I could not believe that Audrey was being ornery when I sat her on my lap. She only wanted to get down and play. Same with Ronin. In retrospect, I shouldn't blame them for feeling cooped up and wanting to release their energy. But this morning I was truly at a lost on how to discipline one's children in public, when they are clearly being naughty. Doing 1-2-3 would have been laughable because since they were both orbiting Tyler, one would be wreaking havoc while I'd wrestle with the other to sit still. Let's just say I need to find a better lure for my youngest two.

Nikko went to school, came home, had ABA with Rebecca. Things went smoothly overall. Rebecca noted that Nikko was getting very hooked on one reinforcer when asked to do a drill, and was not responding to other reinforcers. I guess I'll have to dig around for more toys that Nikko will truly want during sessions. Finally, this evening I went to a Bollywood dancing class with Atz. It was good to get away for just a little while. Nikko was having a bath when I came home, and Ronin was still awake but set for la la land.

Friday, March 11, 2011

Home again today

Today was Mineral Oil Day 3. No poop, just a smear at the beginning of the day. I wonder if Nikko will poop tomorrow. I have to factor in that he was not 100% today, still had such a low temperature that I wanted to ship him off to school. It was the persistent cough and runny/bloody nose that were red flags telling me it wasn't a good idea yet. This evening I gave him some cough suppressant so that he'll sleep comfortably, and we sprayed saline into his nostrils against his will to help moisten those tissues. Nikko is sleeping very soundly because he didn't nap all day. I hope he wakes up with no temperature and a clean (read: not bloody) nose.

Wednesday, March 9, 2011

Sick? Really?

3/8/11 School Report - OT: Doing animal obstacle course several times - needed less cueing after several reps. At table - started vocalizing when started animal drawing and name printing. Stopped when did dot art fish paper. Vocalizations were definitely during non-preferred tasks.
Bathroom: Nikko was lethargic today and coughed quite a bit.

Last night around 1a I heard a barking cough coming from the bedrooms. I was at the computer and listened. It was coming from Nikko. It sounded like the kind of wet cough that Ronin makes when his airways are getting worse. I checked on Nikko and while his legs were hot, his head was not. I had to change his diaper before I went to bed. Around 4:45a I heard him crying so I got up and went into his room. He sat up, irritable, then crawled out of bed and waited for me in the hallway. I debated bringing him to our bed but thought he wouldn't fall back asleep right away. He'd probably lay there and babble, and maybe squirm around a lot. Instead, I ushered him to the living room couch and let him lay in his corner while I sat next to him. We both drifted into sleep again, as I woke up at 5:45a to see him sleeping and I shifted my position on the couch a little.

This morning he was walking/babbling and moving about like his regular self. He even had a session with Kathy this morning and did well, very focused. The school nurse called this morning and asked if Nikko was for sure going to be at school today because he was having a hearing test with an audiologist and that person was driving in. I said he was coughing last night, but didn't have a temp or fever this morning at all. So I sent him to school as usual. It wasn't until I was driving home from Target with Audrey sleeping in the back that the school nurse called and said that Nikko was reportedly putting his head down on his desk and falling asleep, and had a 101.9 fever. Oy. I had to go pick him up (and Audrey was dead weight while I carried her slumped on my shoulder into the school office). Nikko's neck felt hot but he wasn't whining or acting terribly out of sorts to me. At home, after a snack, he got tired and I put him on the couch for a short nap. He felt warmer to me so I gave him acetaminophen. He won't go to school tomorrow, I cancelled his morning speech session with Lisa, and I'll have to cancel Rebecca tomorrow just to be safe. I hate for Nikko to miss school, especially during this period of good moods and progress in speech. It can't be helped.

Today was also Mineral Oil Day 1. I put it in his morning apple juice and saw the oil separate right at the top. Here I thought that oil would be heavier than water and would sink to the bottom, easier to slurp up. WRONG! Where the heck was I in science class? I don't know how much mineral oil he actually ingested. I will try again tomorrow, but put less juice in his cup so that he'll finish the first round and then require a fuller refill. If that doesn't work, I'll try the chocolate syrup mixed with oil, a 1:1. I hope that works. I hope the mineral oil doesn't interfere with Nikko being sick right now. I also wonder when I'll see the oil take its effects on Nikko.

Tuesday, March 8, 2011

Mineral Oil

I called the gastro today with the intention of halting the lactulose. The pattern over the past three weeks has been inconsistent at best, but a weak pattern showing is 3-4 days with only a poop smear in the before-bath diaper, and only pee diapers during the day. Over the weekend Nikko got on an hourly poop smear change-fest again, perhaps expelling everything that was backed up in INCREMENTS, and then today he went back to longer hours with just pee diapers. Even if the pattern improved, the deal breaker is the gassiness. I can imagine Nikko becoming the brunt of jokes and being stigmatized socially. It's not the direction I want for him, so when the gastro called me back I told her that we need another option. She said, "Well, we can either go back to miralax at maybe a 3/4 capful or try mineral oil." I really felt deflated because I don't think Nikko will take the mineral oil. She said it can be mixed with yogurt or ice cream, or even chocolate syrup because they are oil-based foods. Gotta mix oil with oil. I still don't think Nikko will ingest it because he doesn't love yogurt, I can't give him ice cream every day without him getting fat or the other two kids wanting it every day, too, and MAYBE the chocolate syrup will fly but I don't know about the consistency. She told me about the effects of mineral oil, and even warned me that if not given to him properly then he could get sick from it. It slides down the intestines and helps the poop retain its water because the poop is coated in mineral oil, thus coming out easier. And there's the possibility of some leakage since it's an oil...

The gastro told me to make an appointment to see her next week. I plan to, and to try one more time to discuss what the bigger picture in helping Nikko is supposed to be.

Monday, March 7, 2011

Busy Saturday

Yesterday we had a busy day. We went to the River Trails Nature Center to hang out for a bit. The weather was decent but not dry enough to play outside, so the kids enjoyed looking at the turtles, water snakes, squirrels, birds, owls and stuffed animal heads. We also spent some time in the recreation room, which is always a great place to take the kids on a rainy day. For lunch we went to a hot dog place called Photos. Nikko had a grilled cheese sandwich but later focused mainly on his fries. We stopped by Target on the way home and I picked up a Kitchenaid toaster over. We've been in the market for one because it's such a pain to fire up the oven and cook batches that are too big. The microwave makes reheating a soggy mess. Our fish sticks won't stand a chance if they cannot be ingested as leftovers. We came home and Ronin took a nap while Audrey proceeded to act like a she-devil. And the entire day, Nikko had poop smears. Some were fibrous, some were a tad watery,but all in all I am still at a loss because there isn't a consistent force that's driving all of Nikko's needs. And almost the same thing happened today with almost no reprieve from diaper changing. I am going to call the gastro's office tomorrow because the gassiness that Nikko passes is just plain awful. Can't stand it.

In other quick news, I got a short burst of Alog speed and decided that some clutter really has to go. I think you call it a work in progress. I cleared some space in the kitchen due to the toaster oven, but the piles in every single room need some cutting down.

Friday, March 4, 2011

Naming, PD and Poop

3/4/11 School Report - Speech: Requesting animals for puzzle. Requested singing Twinkle. Greetings in office. Teacher pix are posted. We looked for each of his teachers & therapists. "Is this Mrs. McCarthy - No Mrs. McCarthy" for 5 or 6, then found it and he would say "Mrs. McCarthy!" for correct one. He picked it up pretty quickly. Nikko is also ding a good jov making choices. If offered Do you want red or green? He will choose rather than repeat both options.

Nikko really wanted to play with Play-Doh this morning before going to speech and there was just enough time for me to let them play. It wasn't without me stressing about being on time, though. When we arrived, the parking spaces at our entrance were filled and I really didn't want to walk a long way in the drizzle today. I drove around to the front of the building and found a space there, but we had to trek through the APT hallways to get back to the waiting lobby. Nikko seemed to have a good speech session with Karen this morning. She had a puppy board game that he really wanted to play and he requested it often. She also told me that when she tried to get more motion out of him regarding the sled/sleigh, he would say NO. No no no! That is great to me, because he has never told me NO straight up. I always get the whining version. Nikko is also still doing the headphones with Karen.

As we were leaving speech, I could smell a poopy diaper. We went to the bathroom to change Nikko and it was a partically smear (read: dry flecks. He had been sitting in it for a while.). It wasn't something I wanted him to sit in on the way home. After lunch, he smelled again so I changed another poopy diaper, this time it was more the consistency of peanut butter. It had a tiny bit more volume and was honestly the best poop I have seen from him in a week. The boys went off to school and when he came back, he had three more smear incidents His last BM in his diaper was peanut butter again, which looked great. Ha ha ha, talking about poop looking great! I must be a mom. :/


3/3/11 School Report - Speech: During shelter in place drill downstairs Nikko kept saying "Good job." He did a good job! Speech time - Great job naming home vocab & foods - every time he didn't know one he said "I don't know" & shook his head & LOOKED at me to tell him. We played with the dollhouse and he did nice job moving people around to take bath, walk, watch tv, sleep, eat, go potty.

Today when we went downstairs for a short moment, Nikko came up to me saying, "Bouncy house." I really didn't want to assemble it and then disassemble it in ten minutes so I refused him. Nikko had himself an all-out wail fest. There were lots of tears, too, but I was unwavering. What I did decide, to placate him, was to have the kids play Play-Doh. Audrey and Ronin played it yesterday for a half hour of happiness. So before lunch I set it all up again, this time using the birthday cake play-doh machine properly. It formed little cupcakes that Nikko coveted. Thankfully, he understood that he couldn't take the cupcakes all over the place with him, so when it was clean-up time I opened a sandwich bag and started putting his cupcakes in it. He complied, and to me that was a small battle won.

Right when the boys came home from school and set foot into the kitchen, Nikko was eagerly asking for play-doh. Jovy was going to come over, too, so I knew we would entertain with the clay, but I wanted Nikko to eat snack first. I said, "First snack, then play-doh." Nikko repeated what I said, but he suddenly became very unhappy that he didn't get play-doh first and he again erupted into a wail-fest. Twice in one day is a lot for him! Despite the lure of cheese puffs, the play-doh won out and he wasn't content until I opened that bag of clay cupcakes again. After a half-hour or more, I was able to shuffle him away from the table by turning up WALL-E on the DVD player and enticing him with fun activity with the other kids. Play-doh is fine (or I am learning to accept using it in the house, but my rule is that it stays in the kitchen), but I don't want Nikko's rigidity or novelty want to increase the desire to carry it around like his other toys.

Wednesday, March 2, 2011

Good speech / Thoughts on K

3/2/11 School Report - OT: Swing -stayed on a little bit. Then did trampoline, scooterboard & animal walks. Took drawing & cutting samples and worked on printing name. Made "N" independently a couple of times.

I forgot to mention that yesterday, when Nikko was getting strapped into his seat on the bus, he was looking out the window right at me and I could see his mouth making a big circle as if to say "Byyyeee Mooooom!" And I think he really did say that because the aide who was strapping him in looked up at me with a smile to see if I was looking. I waved back in acknowledgement and I got the warm fuzzies because Nikko has never independently said Bye Mom on the bus before. :)

Nikko had a good speech session today with Lisa. She said that she heard more spontaneous speech coming from him during their play. We went home and the boys (both of them, despite Ronin's wheezy breathing) went to school. I then took Audrey with me to return a DVD and books at the NSSEO, to register her for pre-K in the fall, and to Target to get a bunch of foodstuff. Denis came home early, too. When the boys came home, I quickly fed them snack and then told them I had to go to a meeting. I prepped Nikko by saying, "Nikko, Mommy has to go to a meeting. I'll be right back, OK? I'll be right back. I'll see you later, Nikko! I'll see you later!" I smiled the whole time and got down onto his level to say all those things. Nikko accepted my speech and said, "Byyyeeee, Mommy!" When that happens, I know that he's not going to be upset by my leaving. I don't surprise him anymore by sneaking out; that's just bad news waiting to happen, and I also don't think it's kind.

I met with Nikko's teachers to continue talking about Kindergarten. My concerns were whether or not the curriculum he'd be working on would be modified or standard? They said that his K work would be modified to his level so he can accomplish it, and he'd be working with a classroom aide to get things (or parts of things) done. Another concern was the level of communication between parents and teachers. I have talked to a few other moms about Kindergarten and they all said that the communication is not good. Whereas Nikko has a great teacher environment right now because they can all talk to each other in the same room, in K the teachers are spread out. They meet monthly to talk about their SN students, so that's a comfort. One of the teachers had daily progress reports similar to Margie's. I would really prefer that kind of communication, so I'll have to work it out with whatever teacher is going to be in his ESP classroom. A lot of things will be hammered out in the IEP meeting in April. I really look forward to the information I'm going to be getting to prep myself for that meeting! We also talked about Nikko being eligible for ESY again this summer, but this time it's at Lions Park. Of course I'd prefer it to be at Fairview, but I think they alternate schools each summer. I'm going to have to move Nikko's speech sessions around when that starts. There's a lot of things I have to mull over as well regarding Nikko's summer ESY session, possible day camp through the NWSRA, what to do with Ronin and what to do with Audrey. Everything revolves around Nikko's schedule, but I have to make the other kids' summer a nice one, too.

Random things

3/2/11 School Report - Speech: Linda Hoeck is coming to Nikko's annual review! Good job naming things in room. Likes to go to lounge and name food in fridge. Greetings. I am hearing more spontaneous words attached to an activity. I had ball - I wanted him to request but he said "throw" "catch" "ball". Working with water on & off, cold, requesting, etc. He saw a carrot. I said "Yuck" - He said "Yucky carrot", liked it so kept saying it. Imitated most phrases well today while working. Good job naming animals during group today, too.

Nikko had a good session with Kathy today. She didn't really go into details and I didn't hear any protests or crying. That was really it regarding therapies today. Did I mention that yesterday I gave the boys haircuts? I was using a rechargeable clipper that I got from Costco, and lately the charge has begun to shrink. I finished Nikko's hair and barely got started on Ronin's when the clippers died. I waited at five minute increments to get some juice going, but ended up using scissors on Ronin's hair. Then I went on and ordered real plug-in-the-wall clippers and attachments. Geez. Today I marvelled at Nikko's haircut and wonder why I wait so long in between. He looks so cute! And I can't resist rubbing that buzzed head of his.

The front console of our portable dishwasher stopped working AGAIN after only six months since the last repair. Denis contacted the manufacturer and today a guy named Frank came to check it out, order a part and then came back in the late afternoon to install it. Nikko came home from school when the guy was here and he did a good job of watching from the kitchen table, sitting next to me. I even gave him the iPod Touch so he could play some skee ball. That in of itself is a new, cool thing I found out; his ABA therapists sometimes used their iPhones to entice Nikko to the next drill, and one of them (Jenna?) taught Nikko how to use the skee ball app. He easily flicks his thumb up the lane, and even hits the MORE button when the game is over. It's easier than teaching him Angry Birds. In Nikko's backpack I took out an art project. It was yellow yarn and a fork glued to a paper plate with red paint drizzled over it and three peach pom poms on it. Spaghetti and meatballs! Nikko started chanting "Cold spaghetti, yummy yummy!" which is from The Wiggles. It's really a neat looking project and I'm glad he has some ownership over it.

Last thing: two teaspoons of lactulose a day are not making me feel very secure. He didn't poop the entire day, but had a slightly shred-like smear at bath time. A little more volume than a smear, but not enough to be a small BM, in my opinion. I'll give it the week and see if there's a pattern to be had.