Sunday, October 31, 2010

Halloween Hoopla

On Friday I had plans to take Audrey to the boys' school to witness their Halloween Hoopla. Hadn't figured out how to split the time between classrooms and figured I'd wing it. I got to the school a little after 2:45p and saw a packed parking lot. I had to park around the corner and dragged Audrey toward a throng of parents that were snapping pictures at the stream of little kids in costumes taking a turn around the building. After a minute of watching, I noticed that the kids were slightly taller and remembered that the preschoolers had probably already passed by. I looked at the other end of the building and saw other parents beginning to migrate in that direction. I also saw the first sign of costumes rounding the corner so I scooped up Audrey and ran to stake a spot. I was rewarded a few seconds later by seeing Ronin's teachers and then a small, gray-hooded shark. I cheered for him and when he spotted me, Ronin's eyes got big and he shouted, "Mommy!" He ran for a hug, which I gave, and then ushered him back in line while reassuring him that I'd be inside in a few minutes. Then Nikko's class followed and I saw him walking with his jacket of his black skeleton costume. Ms. Winters the Tootsie Roll was holding his hand and pointed me out to him. Nikko ran over to us and got big hugs. He whined a little bit when Ms. Winters ushered him back toward the school. I stood with Audrey for another few minutes taking random pictures of other kids when I realized that I should head back inside and go into the classroom. I went to Ronin's room first, figuring that if I went to Nikko's room he would not let me go without a fight. Ronin was so proud to see me and was very confident in singing the songs and dancing the dances for the parents. Even Audrey was invited to sit in front with her brother. I was in his classroom for about thirty minutes when I decided that I should spend time in Nikko's class.

Ronin was allowed to come with us. While trotting down the hallway he wanted to shed his shark costume so I let him. We went into Nikko's room as they were finishing a song and I couldn't spot him at first. I think Nikko saw me because he was heading my way from the back of the kids. He led me back to his red booster chair, which Audrey automatically claimed as her own. The kids were gathering to do a class picture and Nikko didn't want to sit with Ms. Winters. I saw Mrs. Napoleon motioning on the other end of the kids so I pushed Nikko toward her and he obliged while protesting. Then the Hoopla was over and I was asked if I was taking the boys home. I said yes, definitely, and they would let the bus driver know. I think Ronin was disappointed that he wouldn't get to take the bus home, but there was no point in making them wait around. Some kids in Nikko's class said hearty Hello's to Ronin. A boy named Tommy, who was in summer school with Nikko and whose mom I saw at the parent meeting, came up to Nikko and gave him a hug good-bye. The mom had told me in the hallway on Monday that Tommy talked about Nikko all the time. That really surprised me. Another boy, dressed in some kind of brown monster suit, stood in front of Nikko and said "Good Bye, Nikko." Nikko didn't even look at the boy, so I turned Nikko toward him and said, "Say good bye," but I don't think Nikko did. It made me wonder for a quick second if the boy minded, or if anyone that said HELLO to Nikko and didn't get a greeting back was ever offended or thought Nikko was being rude. For those who don't know that Nikko has ASD, I could see how they might think that about Nikko. But I really hope his current peers have some understanding. I think they all know that Nikko isn't that fluent with his words. He's not necessarily non-verbal because he CAN say words, can sing songs and script things, especially when prompted. But when he's not prompted, he has no spontaneous speech, only whining and shrieking. Does that mean he's technically still non-verbal?

Mrs. Napoleon told me that Nikko had a good day, despite the overstimulation of the hoopla, despite the changes in routine and loud noises. I'm very glad to hear that. I noted that his whining only happened when he saw me in his classroom setting. Figures.

Ronin is the second shortest kid in his class. I thought he was the shortest until I saw a little girl dressed in a purple fairy costume that seemed to be tiny. Maybe Ronin's shark fin gave him some height. In any case, he looked dwarfed amongst his peers. Nikko is getting taller and now seems average height. I thought about something that made me pause, however. When it's circle time or a group setting on the main carpet, all the kids get a piece of circle rug to sit on that has a picture of a bug or flower. Because Nikko has had problems sitting still and following commands, he and perhaps another SN kid would sit in the plastic booster chair. I noticed it today when we came in the room, and noticed it even more when the room cleared at the end of the Hoopla. It was the only booster seat on the carpet. I know he needs something to contain himself because if he were left to sit freely, Nikko would probably end up laying on his stomach, his favorite position at home. That's not appropriate in the classroom. It still made me sad to know that he stands out from his peers in another way. If he sat on a carpet circle, I would bet that the staff would expend energy trying to make him sit still and pay attention, and that would most likely be disruptive. I wonder if I'm just trying to reassure myself about it.

Today we went to a Halloween/birthday party. Nikko wore the same skeleton costume, Ronin was Bob the Builder, and Audrey was dressed in black with a cape. Nikko didn't eat very much and was carrying around a DVD case to a Wii game in addition to his green and orange frogs that he got from a school loot bag. Nikko didn't socialize with anyone and started getting obsessed with some small cupcakes that had a dab of orange frosting on them. He'd pop the frosting into his mouth and not finish the cupcake, of course. Otherwise, he darted between rooms and maintained a fair mood.

One last note: I was flipping channels before lunch and saw that the Temple Grandin movie was on HBO. It was 45 minutes into it, and normally I don't like jumping into the middle of a movie. I'd prefer to watch it from beginning to end. But since I was curious about Temple Grandin and was always missing the movie, I tuned it. It didn't take me long to get up to speed, but I'd like to go back and catch the beginning at another time. From what I did watch, I was extremely impressed with the movie. Claire Danes' portrayal of Temple Grandin was remarkable. She was only acting, but her mannerisms and her lack of eye contact, head jerking and posturing reminded me so much of my dear nephew, who has asperger's. It was uncanny. Like I said, I'll go back and watch the beginning very soon. I'm glad I caught part of it after all.

Friday, October 29, 2010

A better day, and ruminating

I put a decent amount of miralax in Nikko's juice this morning and he didn't have any bowel movements today. Could be because there's nothing in there to move. But if he doesn't have one tomorrow, I'm going to have to watch him closely for straining and more possible blockage that didn't come out the first time. Doesn't this sound so familiar? Yes, this happened already once, twice before. So c'mon, Nikko, please have a poop tomorrow before lunch. Please.

School notes: ST - Better day today. Good naming pictures to go in a puzzle of fruits, 1 of food and 1 of household objects. Some I had no idea he knew! He cried for a minute in the middle unprovoked. Read Bus book, went to office for greetings and did 1 step commands.

This morning Nikko had a good session with Kathy. There were no outbursts until the last ten minutes of the session. Kathy told me this was where she brought out the Candyland game and forgot that Nikko does a little stim with the characters, not really taking turns and playing the game. She played with him for a while, but when it was time to put it away he protested and got mad. Besides that, he had a good mood day, unlike yesterday. He went off to school and was happy when he came home.

After the kids went to bed and the dishes were loaded into the dishwasher, I had to decide which project to tackle tonight. Yesterday was all about laundry (adult laundry, 3 loads. I ran another load of kid laundry this morning. Felt super-productive in that respect. It's the little things.). Tonight I decided to finish laminating a few cards that were still missing from my daily schedule. I made a card for Go Home (an arrow pointing to a house with our family faces in it), nap time, bath time, exercise, and a card for Jenna. I think my schedule is now complete! But what I also wanted to do tonight was go onto a few websites and do some research on Elementals Living. I have read a big section that describes, with video, how you take samples of hair and stool and other things and then send them to a lab so they can do testing. I think there's a blood test involved as well, which I'm not going to be thrilled about for Nikko. I'm also sitting here trying to make sure that I know what I want from going this route. Like all moms with ASD kids, I want to find a cure for my child. I want to do it without causing him pain, or to avoid long-term pain. I want it to be safe. I want it to work. I've read so much lately about this organization or that organization trying to disprove the DAN! doctors, the biomed methods, the hocus pocus and the voodoo. So why won't a regular pediatrician try harder to understand how to help treat an autistic child? Why do they keep burying their heads in the AAP guidebooks? I've been wondering if I have a friend that is a pediatrician that can answer these controversial questions. A friend told me something that is a very common phrase in these circles: Just try it. If it doesn't work, then move on to the next thing. People not sitting in this boat may think that's so risky, sounds stupid, sounds like it doesn't hold water or doesn't use common sense. It does sound unsafe, rash and impetuous. But when your child is struggling to communicate, whining like a dog instead of using words even though he can sing Happy Birthday to a velcro cake, when it is painfully obvious that his peers and his siblings are surpassing him academically and socially, when you just fear for his future because you have absolutely no idea if he will improve or, worse, regress, then you become desperate.

I am desperate.

There's got to be a better way.

Thursday, October 28, 2010

The last two straws

School report: OT - Didn't want to come at first, but then played flashlight tag and was fascinated by flashlight. Played toss with pumpkin balloon - with verbal cues throw to me and also caught balloon! Then at table -worked on drawing pumpkins and ghosts.
ST - Rough day for speech too. Cried - mad. Didn't get much done.

*****TMI ALERT*****
Nikko didn't have a poop yesterday. Today when I changed him before school there was just a little poop, not rock solid. I wondered if it was a constipation sign and feared it slightly. I had forgotten to put miralax in his juice one day over the weekend and feared this would be the result. He came home from school and didn't look right. When Jenna came, he was resistant to go downstairs. He started yanking away at my arm when I pulled him to the foof chairs. Still, I gave him some hugs and left them to work. I could hear him doing some whining and screaming a few minutes later. I went over to his backpack and read his school report. When I saw that he had a bad day at school, I realized that he was not going to accomplish anything during ABA today. I went downstairs to talk to Jenna and Nikko was teary-eyed, red-rimmed. She said that any time she tried to engage him in an activity he would dramatically fall on the foof chairs or scramble away from her. I told her we should cancel the rest of his session and she offered Monday as a make-up session which I gladly took. It was around dinnertime that I decided that Nikko would need help pooping again. I had to do it before leaving for Zumba class, so at 7p I changed his diaper and put in a suppository, telling myself I'd give it 10 minutes to work since the last time it took well over 15 minutes. He went through waves of struggling and then resting against my chest, and when he pushed his poop through I felt him shudder as if it were very painful. It was a big blockage. :( I had to hold him a few minutes longer just in case he wasn't finished and it was during this time that he went ballistic. He kicked and squirmed and screamed until I decided it was long enough to let him go. I felt so bad for Nikko. I hope that his day tomorrow will be better and that he's in a good mood. I will up the miralax yet again. I basically have two straws left in my pocket. One will be to look up something called Motion Potion. I googled it a few months back and hesitated because I heard it may not be as soluble in juice as miralax, but now I'm going to seriously look it up and read more. Second, I will revisit the website and reread all the information on medical testing. I am going to look into the holistic doctor that my friend Heather suggested a long time ago. I have nothing to lose anymore.

Wednesday, October 27, 2010

Baby the baby

Nikko has become attached to the doll in the stroller that Audrey got for her birthday. When it is sitting in the stroller, he will be nearby and sometimes will lean his head way into the stroller as if to look at her face up close. He has brought the stroller to me, whining, saying, "Seat, seat." I'll see that the velcro strap to the seat belt is undone and I'll fix it. Then he'll wheel her off. Or the toy bar has one end unsnapped and he'll bring it to me for an adjustment. I decided not to name the baby so that Nikko will just call it Baby and perhaps generalize with other babies.

School report: Snack - Nikko ate several pieces of banana today. it was cut into 3 pieces and he peeled it and ate it!

Nikko had swim class tonight. I think he was excited about it because when I asked him about swim class, he ran to the schedule on the wall and looked at the picture for Nikko Swim, which has a stick person swimming in waves. When they returned, Denis said that he is doing better in the class but is still very wriggly. He especially doesn't let Miss Connie hold him floating on his back for very long. Of course he wants to do his own thing, but I hope the classes will eventually sink in.

Finally, today the class pictures came back. Nikko looks great. He's smiling at the camera and looking right into the lens. I couldn't have asked for a better picture of Nikko.

I wish I could say the same for Ronin's picture. I looked at it and was so disappointed. He was looking off to the side of the camera. He wasn't smiling. He looked like it was the last place on earth he wanted to be. What happened to my bright, shining star? Where were his THREE dimples? I'm contemplating a retake and would then prep him for the next two weeks so that he will SMILE on command. I feel like the opportunity for a great smile was wasted on Ronin. I wonder if he was scared, which would lead to noncompliance.

Tuesday, October 26, 2010

Crying in EC 1

Over the weekend, we had a family party to celebrate Audrey's 2nd birthday (which is in two days). Both sides of the family attended in our house. It was crowded, so some people spilled outside, many of the kids went downstairs into the cool basement to watch Hanna Montana, and others like me stayed in the kitchen, which was the warmest and most humid room in the house. It was not by choice, but because I had to help feed my kids, wash their hands, poke my head outside to make sure no one ran down the driveway, replenish food, and try to have a bite to eat. Nikko was in a fair mood and found most of his joy playing near the garage in the Little Tykes car, putting leaves into the driver's seat. When Nikko was inside the house, however, he was at my heels whining about one thing or another. He might have been too warm, he probably wanted to go back outside, and when it was cake time he was at my elbow making sure he got a piece that had plenty of icing. Thankfully I waited until the next day to open Audrey's birthday presents. Ronin was anxiously trying to rip the paper off the gifts while I tried to maintain order. Every time a gift was opened, the three kids converged on it until someone started pulling it away from the other. And so when we opened the Little Mommy set which included a doll, high chair, stroller and bed (all to assemble by myself), Nikko's eyes were big and fixated on the stroller. It was actually the younger two that kept meddling with the parts and pieces, to which I kept growling at them to back off. When the product was finished I warned the young 'uns that Nikko would probably play with it first and they would have to wait or take turns. Nikko obsessed over the baby in the stroller for a while, but he also was content to hang onto a Tinkerbell doll that had light-action wings and sound.

Today we had a great opportunity. I received a flyer last week regarding a Parent Meeting where we could meet other parents. And babysitting would be provided. How could I pass that up? It was for today, Monday, October 25th from 1-2pm. I replied that we would be in attendance. I wondered how the kids would handle being dropped off with other kids and teachers while I went to another room. I remembered how the kids had to go with the flow during the MGB Services retreat, going with other people to play games or do crafts and activities in a completely alien environment. At least Ronin and Nikko would be in familiar surroundings since it was at Westbrook School. So when we got to school, I walked the kids into the Early Childhood 1 Room, which was Nikko's classroom. He stepped in excitedly but when he turned back to see me wave good bye and back out the door, he suddenly pivoted and tried to bolt toward me. Mrs. Penner was in his way, then Mrs. Napoleon came over and Nikko was crying in protest. I quickly walked down to EC 2, which was Ronin's classroom, and got to sit right next to Mrs. Russell in a circle of parents, Mrs. McCarthy opposite me. I could hear Nikko's cries and wails through the walls and announced to the parents that that was MY kid, no need to be alarmed. LOL. The crying did subside within a few minutes while we had a roundtable discussion (with no table) regarding topics that we'd visit throughout the year. I interjected when I could, and found it supporting to hear that other parents went through the same woes. When the hour was up, we walked back to EC 1 and saw that all the kids were in a mad scramble to put all the toys back on the shelves. I saw Audrey hanging out next to a table of toys, and Ronin and Nikko were in the sea of kids running in circles to grab any toys off the floor. Then they spotted me and swarmed on me instantly. Nikko was smiling and laughing. I knelt down to his level to give him hugs and he took a few seconds to pause and really look me in the eye. He leaned in for a kiss, too. We are supposed to have these meetings 4-5 times over the year (they did it two years ago but stopped, and wanted to jumpstart it again). I think it's a great idea for parent support as well as the opportunity for my kids to see other kids on a day they don't normally go to school, and especially for Audrey who doesn't get to hang out with other kids unless it involves Ronin or her cousins. We came home in the afternoon and I tried to put Audrey down for the nap that she missed but she clearly didn't want to take a nap. I'm sure that will be fodder for the next parent meeting.

Saturday, October 23, 2010

Power drill

Yesterday Nikko was sitting next to me at the kitchen table, playing with a toy power drill complete with plastic drill bit. He got up from the chair to perch on the edge of the table and used my leg for a boost. Unfortunately he used the power drill, bit side down, to push off my thigh. I gave out a yelp of pain followed by furrowed brows and a frown. He looked at me, put the drill down, then tried to climb up to my face and stare at my eyes until the pain went away, so it seemed. He looked concerned. I told him, "Nikko, say Sorry," and made the sign for Sorry at my chest. He copied me and said, "Sorry."

I got a call from the school nurse today that Ronin had come off the bus crying hysterically, then coughed so hard and threw up. She monitored him for any allergic reactions but saw none. He wanted to go home, so I had to wake up Audrey and drag her to school. After calming Ronin down in the nurse's office I deduced that Ronin had wanted his jacket zippered up after being strapped in his seat. When Miss Veronica told him she couldn't do it, he melted down big time. It was my fault, actually, that his jacket wasn't zippered up. We were rushing to get out the door because the bus arrival time fluctuates between 12:50 and 12:56. Sure enough, we set foot on the driveway and the bus was almost at our stop! Early. I had just tugged on their jackets and didn't have time to zipper Ronin. I really don't know why it was so upsetting that it warranted a meltdown, but so be it. I took the kids to Party City to return some chafing dish burners and then we went to Target for a spell. Nikko didn't seem phased that Ronin wasn't sitting next to him on the bus. Later in the evening I had to get ready to go to a wake of a former coworker. Nikko saw me getting ready and when I told him I'd be back soon, he erupted in tears. They disappeared a few minutes later, and when Ronin started saying, "G'BYE Mommy!" Nikko started chanting the same thing with nary a tear. He watched me leave from the picture window, however.

I am slightly concerned about the bus driver and her aide in that I wonder if they are aware that Nikko is one of the special needs kids. I would think YES because they have to stop the bus in front of our house instead of on the corner. [Miss] Veronica said to me yesterday while waiting for Ronin to get unbuckled, "So your little one is a real talker between the two, huh? Nikko is more of the quiet type?" I agreed with her, but wondered if she knew Nikko was pretty much non-verbal in that he doesn't communicate with regular speech. The other bus aid tells him to sit down or move over or put an arm here or there or put his toys in his backpack and I'm sure he doesn't seem to be listening to her half the time. I wonder if she is offended by that or if she treats Nikko like all the other kids. That would technically be a good thing, to be treated just like the others, but in this case I would hope that she is a little bit sensitive to Nikko's lack of complete understanding or following her requests. I hope they are kind to Nikko, even though Ronin is the one who commands so much attention.

Friday, October 22, 2010

ST & OT school reports

Nikko's school reports for the past two days:
10/20/10 - OT - Did lots of swing and heavywork activities. At table worked on drawing squares, people and coloring. Nikko had a good session. I tried to give him lots of sensory input to replace the vocalizations.
Speech - Greetings. What? with pictures choices. Good today!

10/21/10 - Speech - Where is ____? Good job pointing to answer for what ?'s, now working on saying phrase.

Open door

The kids were eating snack when Nikko got out of his chair and urgently started pulling me toward the pantry closet. I got down on one knee and asked, "What do you want, Nikko?"
He quickly said, "Cracker."
Then he looked at the pantry and said, "Open door."
You better believe that I opened the door and was smiling so huge. He ended up pulling at the animal cracker container, reaching in after I opened it and getting four cracker to put on his placemat, but I wondered if he really wanted them because he generally doesn't eat them. I was still marvelling at the Open Door request. He has never asked me to open a door anywhere. I saw Kathy and Nikko working on this skill in a video they took last year. When he said it, it was like music to my ears because it wasn't a food phrase and it didn't have anything to do with the TV or with birthday cakes or a song. It was a simple request that took a long time in coming.

Wednesday, October 20, 2010

Day two of cake

Day two of the birthday cake. As predicted, Nikko was extremely attached to it. When Kathy came over for ABA, I explained the predicament to her and said it was up to her whether or not she wanted to try to pry it away from him or to incorporate it into drills. He ended up having the cake sit next to him on the table throughout the session. I wonder if Jenna will let him do that tomorrow. I called the school to alert them that Nikko would be carrying this cake to school today. They know the backpack routine, but the bus driver and the bus aide are not too thrilled whenever they see Nikko is carrying something (and he always is). I understand where they are coming from; Miss Veronica tells me that when Nikko walks on or off the bus, he carries his backpack in one hand and a toy in the other, so it's dangerous stepping off the bus. I get it. I totally get it. But I did say to her today that at least he's not screaming, and left it at that. Which version of Nikko would they want riding with them that day: Nikko holding onto a velcro birthday cake, wavering a bit on the stairs until maybe I can hand Miss Chris his backpack, or Nikko screaming and whining all the way to school because his cake was put into his backpack on the ride to school and he isn't allowed to hold it? I think the driver and aide don't understand that Nikko doesn't react quickly when they tell him to move over or sit a certain way on the bus. He definitely wouldn't be happy if they told him to put his toy away. I'd say keep the lesser of two evils to ensure a cry-free ride to school. Besides, his teachers understand Nikko's mannerisms and always make him put the toy in the backpack before class starts, and he's fine with that.

I saw one sign that Nikko's cake obsession, while very strong, has a chance to weaken. When he came home from school and had snack, he joined the kids in the living room to play on the road rug with cars. After five or ten calm minutes, he suddenly came looking for me in the kitchen and was dragging me by the arm, whining and being frantic. He was holding only his ice creams. I knew what he wanted, but asked him what was wrong anyway. Between whining he said, "Birthday cake??" I didn't see it in the living room, but apparently Audrey saw it on the couch earlier and took it to her bedroom. She came trotting out of the room with the cake on a plate and boldly handed it to an anxious Nikko. "Here you go, Nikko!" she exclaimed. I told Nikko to say "Thank you, Audrey!" and he did, but I also cornered Audrey to ask why she took the cake and she gave me an innocent "I don't know!" and happily walked away. Nikko took his cake to swim class, and now it's with him in bed.

Nikko's school report: Speech - greetings, categories, what ?'s with picture choices.

Tuesday, October 19, 2010

Velcro birthday cake

Calm day. Denis was home from being in Indianapolis over the weekend for work. We were supposed to go with him but with Ronin's potty training not quite in the groove and being stuck in a hotel room with no clear plan, it was better for us to stay home. Since I've been on an organizational kick, it dawned on me last night that to get rid of the clutter on the kitchen table was to have a home for it (and sort it later). After taking some measurements I concluded that a small credenza on casters would fit nicely under the table. I thought about putting a desk in our bedroom but quite honestly sitting here at the kitchen table is my basis for operations. That meant I would have to make a trip to IKEA. Looking at the calendar, the next available day for a visit would have been Thursday. Today is Monday and when I'm on a mission, four days is way too long to wait. I did have to take pause for a moment because I would have to take the kids to IKEA by myself. Denis had groomsmen duties this evening for his buddy so I would have to fly solo if I really wanted the credenza. I feared the kids fighting, screaming and running around knocking fragile items over. I feared a scene. With a short list in hand I packed the kids in the car and headed out. Since it was Monday, the parking lot was not crowded at all. I have always wondered how I'd get the kids into the building without a stroller but now that all three of them are walking it was much easier to navigate the parking lot. I held Nikko's hand on one side, Audrey's in the other, and Ronin held onto Audrey's other hand. CUTE. The IKEA gods blessed us today because I saw an army of shopping carts with the ride-on cars attached to the front all lined up next to an elevator. The boys took the bottom and Audrey sat in the cart with some mild resistance but her curiosity won over.

I used to be able to run into the IKEA in Schaumburg, IL with my list in hand and know exactly where my items were. I'd tsk tsk the first-time shoppers who where overwhelmed with the store, weave my way between aisles and run along the center circle that hugged the escalators on each floor, knowing I could cross from one end of the store to the other in a straight line without having to run in a circle. Well, today I forgot that our IKEA had a recent remodel. They blocked most of the center circle off so that shoppers have to walk around each floor in a circle, purposefully making shoppers pass by and stare at the rooms set up with varying styles of all their furniture and accessories. I hate it. It is going to be a nightmare during the holidays. There will be bottleneck traffic. And they moved things around so of course I don't know exactly where my target items were. I hoped the kids wouldn't get too bored and antsy in the shopping cart/car with two steering wheels. As I said, the IKEA gods blessed us with a pleasant shopping trip. Nikko sat in the car practically the entire time, holding a plastic flower that I gave him along with his sibs. He didn't squirm or try to get out. Ronin got a little hyper-excited when he saw some toy trains and tracks, but since I had intended to get them for us, I allowed him to carry them closely. We passed by some stuffed toys and I saw some velcro-fabric food. This is the only time Nikko jumped out of the car. He saw the display had velcro ice cream and cake so he started whining for me to open a package. I put the bag in my cart and luckily found two errant ice creams not fastened to a display, so I gave them to Nikko. He calmed down and crawled back into the car. I found the credenza I wanted, took us to the lower level warehouse to pick it up, and basically concluded our trip so smoothly that I rewarded the kids with McDonald's nuggets and fries when we got home. The kids loved the road/race track rug that I picked up for under $14. But when I opened the package of ice cream and cake, Nikko suddenly became interested in the velcro-bundt-shaped cake. I announced it was a birthday cake and Nikko's eyes got really big. He claimed the cake for his own, wouldn't let the others play with it, and kept talking about Birthday Cake. I showed him how to blow the fake candles on it and he enjoyed copying me. Nikko got seriously obsessed with it, not letting that cake out of his sight. Even during his bath, while I put it on the sink counter, Nikko would splash a little bit and then peek around the curtain to make sure the cake was still there. He took the cake to bed with him, too. I wonder if he will want to take it to school. If so, the teachers will have to put it in his backpack. I'll have to warn the bus driver that Nikko may be vehemently protective of that cake on the bus. I may have to go buy another cake as a backup.

Monday, October 18, 2010

"Playing" with Nikko

I underestimated Ronin and Audrey. They have no desire to rip off the PECS pictures from the visual schedule. In fact, Ronin has embraced it so much that he "reads" it first thing when sitting at the table for breakfast. He has also pointed out to me that I am missing a card for "Go home" as in when we went to Maya and Rex's house, then the next picture was snack, then dinner, and I remarked how I forgot that I should have a Go Home picture. Ronin proceeded to nag me about having that card for the next two days. (I still have to make/find one). He also noted that Audrey should have a nap time picture. Finally, he asked me tonight if we can have a bath time picture, to go in front of the bed time picture. Amazing.

I'm also behind on posts because I have been concentrating solely on this daily schedule after the kitchen is cleaned up and kids are sleeping.

Nikko's school report 10/14/10
Speech - A bit cranky at first. Worked on requesting, colors, 1-step directions and "Where is ______?"

10/15/10 - Speech - We worked on greetings, "Where is ____?", answering What questions with picture choices & body parts.

Tonight I got a bunch of pictures from the school regarding Nikko in class. He was playing on the floor in front of another boy and a car garage. He was building some odd-shaped tower with odd-shaped blocks. He was holding a mask and laying in a toy bed. He had a picture with Ronin on the playground. He seems to be content to be in school, which makes me very happy.

On Saturday we went to a birthday party for my SIL and her daughter. Ronin followed Maya around like a puppy, Rex and Audrey were playing some screaming tag games, and Nikko was eating potato chips and playing on a pink inflatable dinosaur. He joined in some balloon games but mostly stayed by himself. I don't know why I didn't think to push Nikko to interact more with the kids, but I should have. Today while we chilled out at home, Ronin mentioned that he liked to play with Nikko. That really warmed my heart. Playing consists of laying on the floor and pushing their Thomas trains and box cars around the track, sometimes rolling right over each others' trains, or going in reverse at my behest. I think today I might have had an interaction or two with Nikko that elicited somewhat spontaneous interaction, meaning I asked him a question and he said YES instead of repeating what I said. Not saying he still doesn't repeat, but I think he actually answered a question which currently escapes me.

Wednesday, October 13, 2010

PECS and positive days

Nikko's school report:
OT -Ding lots of heavy work and movement activities. Afterwards worked on a target pumpkin toss activity and did a scrunch art apple activity.
Speech - Greeting and worked on "Where is ____?" Very mad at end of day. He was attached to a plastic apple and got very upset when we put it away.

For the past two days, Nikko has been very interested in eating the spinach ravioli from Costco that I've made. "Pasta." He's literally wolfing it down at dinner and lunch. Am I complaining? NO! It's the only green thing that he will ingest, at least green on the inside with a splattering of spaghetti sauce on the outside. He's even rejecting the store-bought pizza. However, I should try to make the "homemade" pizza for him, just for variety.

The school made Nikko's communication book, complete with PECS pictures and pages that have shapes, emotions (very important page), vehicles, people and food. It inspired me to get off my duff tonight and move forward on the picture schedule for the kitchen that I've been meaning to create since we got back from the retreat at the end of September. I just have to make a few more pictures for it, like Play Outside, Exercise Class, Clean Up, Mom's House, Lolo & Lola's House, and Birthday Party. These cards will help outline the day/week. It will be helpful to Nikko as well as the other kids. My only problem I foresee is that Ronin or Audrey will try to rip off the pictures and run around with them.

Nikko has had two great days of ABA in a row. He had no And upstairs, he hasn't been as volatile as he was last week. If he cries, there's a reason for it (Ronin pushed him, Audrey took away his toy). His bowel movements have been moving, more or less. Today was strange because he really didn't drink much liquid. His glass of juice from the morning sat for most of the day until school. Did he sense I had dumped MiraLAX into it? I'll try again tomorrow.

Saturday, October 9, 2010

Good morning, Mommy

This morning I woke up at 7a and heard Nikko talking to himself. I got up immediately and went to his room before he started to strip down to his diaper. When I opened the door he scrambled (clothed, thank goodness!) up over the side of his bed and came to me. He said, "Good morning, Mommy." It was in his usual manner which comes out sounding like "Gooool mornig, Boppy," but the point is that for the first time ever HE initiated the greeting to me. I was thrilled! Unless he is requesting food or an object, or unless we prompt him first, Nikko has never greeted me before, so that was just an awesome thing to happen. Then I took him to the bathroom and he sat and peed in the toilet. Another good thing! Later in the morning I put the Desitin ointment (40%) on him and continued it for the rest of the day. I think it is helping, actually.

Thursday, October 7, 2010

Bottom woes

Nikko's School Report
Speech - Greetings, vocab & requesting.
Snack - Nikko ate the insides of 2 apple slices
Bathroom - We were able to apply vaseline to the affected area. Please send in a small jar of vaseline for us to use should the need arise again. Thank you. He went poop 3x. 1 small, 2 big, solid.

As you can see, the school is helping me out greatly in keeping track of Nikko's bathroom habits. This week was a rough one because the constant wiping has made his butt red and raw. It hurts him to get wiped, as evidenced by his wincing. When he's home I put bacitracin and the Bordreaux's butt paste on him. If you recall, the Bordreaux's had a zinc oxide content of approx. 16% vs. the creamy Desitin at 12-14%. That sounds like a good deal, but the redness isn't going away right away. Since tomorrow is Friday, I'm going to give it one more try and then when he comes home from school I'm going to put the ointment Desitin on him, which is like 40% zinc oxide. It smells worse, but maybe he needs more potency. He definitely needs a barrier of some sort. I wish this didn't happen at all, and I wonder truly if it's because he sat too long in poop or if, after the week and a half of constipation with no poop at all, his skin wasn't used to having poop on it again and it reacted? Possibly. Sleuthing here, without much direction. In any event, that's my plan for tomorrow. The last time this happened, he was raw for a week before it started healing. I sure hope it will start healing faster.

Yea on the apple slices! I wonder how the teachers enticed Nikko to do that? Or did they present apple slices without any other snack so he had no choice? From what I recall, snack time nowadays at school is a choice system, instead of making them sit down at a designated time to eat. The other class calls it Open Snack, so they could play OR eat a snack at a given time. Anyway, Nikko usually doesn't eat apples. When I do get it up to his mouth, he'll nibble and then push the fruit out of his mouth with his tongue. I'm glad that the school offers him fruits to eat.

I forgot to mention that yesterday I broke open that box of vocabulary building that I got from Lakeshore Learning. It's 250 pictures of basic words categorized into things like Kitchen items, Clothing, Outdoor, House items, Animals, Food. The pictures are crisp and against plain colored backgrounds. I went through a few categories with Nikko and he was pretty successful at naming the pictures on the card. I think he wasn't sure what to call a band-aid or a clothespin or an ironing board, but he did well with the other cards. It's taken me so long to finally get to doing vocabulary building with Nikko, but I want to make it a priority now. He needs as many words as he can identify, to help him communicate.

This morning Atz came over to sit with the kids so I could go to my pre-op appointment for my eyes. Nobody cried when I left. Nikko even had therapy with Kathy. I came home a little over two hours later and the house was still standing. I am glad that the kids are used to seeing Atz and are comfortable with her. I'm comfortable in the fact that she is able to handle Ronin's drama, Audrey's feistiness, and Nikko's inexplicable tantrums because she has already seen it all. When I came back from my eye appointment I was pretty tired because I sat through a battery of optical tests using different machines, I had pupil-dilating drops in my eyes as well as remnants of a numbing agent. Driving home with dilated pupils is pretty dangerous, especially since my eyes are photosensitive and dilated pupils lets in MORE light. I had to shade one eye while driving. I've gotta stop doing that. I was able to catch a short nap while Audrey napped and the boys were at school. Despite Nikko's bottom woes, he was still in a good mood at home and even requested Watch Thomas a few times. That's the most spontaneous thing I get from him, besides Juice Please and Peaches Please.

Wednesday, October 6, 2010


I woke up at 7 and heard Nikko talking to himself so I got out of bed and went into his. I've been trying to get him on the toilet right after waking up, but since I went to bed at 3am (reorganizing the pantry) I was pretty toast. When I finally got us moving he had already filled his pull-up with pee so I just changed him on the floor. Why make him sit on the toilet for nothing, and me freezing in the bathroom? The other two kids were still sleeping, but Nikko headed toward their room saying, "G'morning, Ronin. G'morning Audrey" even before the door was opened. I told Nikko to come to the couch instead and when he saw the Hungry Hippos game still sitting there, he immediately joined me. For some reason I decided to see if Nikko knew some colors so I asked him, "What color is that?" I pointed to a hippo and at first he didn't say orange until I said it. When I pointed to the next hippo he correctly said, "Yellow." And so it was with "Green." He didn't get Pink correct but repeated it to me after prompting. I was impressed that he could answer what color something was when I pointed to it. He was also successful in the evening when I pointed to Lightning McQueen and asked what color is that. "Red," he said tentatively, but I lavished him with praise so he could be confident in his answer.

Kathy told me that Nikko was very unfocused during the session today. They completed all the drills but it was difficult to turn his attention to the task at hand. He just wanted to lay on the foof chairs. I wondered if he was thinking about the Hungry Hippo game upstairs, or if he was tired (probably not), but after she left I saw that he had a poop in his pull-up so maybe he was uncomfortable and didn't want to sit down. OH.

After snack time I took the kids to the playground at the Westbrook School. I wanted them to play in a safe and familiar environment. Audrey was new to the playground so I shadowed her more than the boys. Since I had been so awful to these kids the past two days I decided to take them to McDonald's for dinner. Denis was coming home late and I figured the segue to bedtime would be quick. The kids enjoyed the nuggets and fries, of course, and continued to carry around their Happy Meal boxes around the house. Ronin really likes his and brought it to bed.

Tuesday, October 5, 2010


****TMI ALERT****
The MiraLAX is working again because throughout the day Nikko had little smeary poop. I'm glad in a way because that means his bowels are moving and he's not in a constipated state. The part that I'm not crazy about is that Nikko is wearing pull-ups now and his changes are frequent. In fact, I had to change him so many times and wipe his butt that I think he's developing a rash that's been there before. And it's painful. What gets me is that pull-ups are expensive. There are less pull-ups in a box than diapers. Each diaper change costs approx. $.27/diaper. Each pull-up change costs approx. $.37. While the pull-ups have velcro sides for easy removal, if I put an ointment on Nikko's butt then putting on the pull-up becomes a challenge of neatness. And Nikko has such easy access with a pull-up that I am constantly keeping an eye on him so that he doesn't reach in and smear.
"No hands in pants!" I'll say sharply when I see Nikko's hand creeping. He'll jolt when I surprise him, which is often. Heheheh.

Sunday, October 3, 2010


Saturday was my dad's 66th birthday. Instead of having dinner at the house, we met at Trainor Hall, the basement of my mom's church, where we'd have dinner with the family during the St. Lambert's Bratfest. It was a strange idea especially since Dad doesn't like to make a big deal about his birthday in public, but we rolled with it. The annual Bratfest used to be a three-day affair in the parking lot, complete with a huge white circus tent and live band dressed in lederhosen. But with dwindling attendance and less profits, the event was moved from August to October, and now that it's in the basement from 6-12p with a capacity of 300, I think it will find its death. The kids were hesitant at first because long tables limited their range of motion, but after we fed them the kids wandered to the dance floor in front of the stage (which had a live orchestral band) and started hopping and dancing around with other little kids. And my kids got SWEATY! There was one boy with glasses who looked like he had Downs Syndrome but could have had some other kind of disability, and he was hopping and laughing amid the kids that were as tall as his waist. The boy saw Nikko, reached out and tapped him on the shoulder, saying, "TAG!" Nikko laughed and bounded away, unfazed. When the boy turned to Ronin and held out his arms as if to embrace him, Ronin shrieked, turned around and was calling for Mommy! in a high-pitched voice. Ronin told me he was scared of the boy, so I told Ronin, "Honey, you don't have anything to be scared of. He just wanted to play tag with you. And look, Nikko's not scared of him!" Ronin seemed comforted by that so he ran back to Nikko and was holding onto Nikko's arm whenever they passed by the boy. I thought it was amusing that Nikko wasn't bothered at all by the boy's looks or invasion of space. Nikko was drenched in sweat from all his dancing and fell asleep on the way home. We woke him up to give him a shower and then put him to bed.

Sunday was going to be a busy day. We had a playdate with Anna and Jovy scheduled for after lunch, and the Penepacker girls were going to spend the day with us because Tristan was going to be in a band competition on the south side of Chicago for the afternoon. Nikko was not overly excited about all the people in the house; in the past he would be crashing and running amok. Because all the faces were familiar, he was able to play at his own pace and act comfortably as if they were all part of the furniture. I didn't notice any unusual behavior from Nikko today except for the times that he was really fidgeting with his pull-ups. When I went to change him, they were really full because he drank a lot of juice throughout the day. I think in pull-ups he is beginning to sense how uncomfortable it feels to have that weight hanging from his waist, vs. feeling the moisture. Once I changed Nikko, he was back to business as usual. I had taken everyone into the basement for some obstacle course fun, but we stayed in the living room for the better part of the afternoon, watching Disney's Cars. It was too cold outside for my kids.

Next week is going to be both mundane and interesting. Tomorrow I'll have to take the kids to Costco because we're almost out of juice. There's no school on Tuesday so I'll have to find some activity for us to do. Nikko also won't be going to his swim class because Denis has a one-time cooking class in the evening. Wednesday night I have Zumba. On Thursday morning, Atz is coming over so I can go to my pre-op appointment at North Shore Hospital in Glenview. It's going to be at least two hours so they can measure my eyes and stuff. I'll be on some kind of drops until the following Monday, when it's surgery day for my eyes. Lasik!

Talking softly

I noticed something about Nikko today that I never thought much about. When he requests things, such as food or a toy or watching a DVD, his voice is rather soft. He approaches me tentatively most of the time. When he asks for ice cream, he makes his fist wave in front of his chin and mouth, doing the sign for ice cream. He looks at me hopefully while he does this, and when I ask him loudly what he wants, Nikko will squeak Ice Cream in a soft voice as if he knows I'll say no. Which I usually do. While he sat on the toilet waiting for Ronin's bath to finish, I took the three ID tags from his hands that he was fidgeting with. I held each one up to my mouth and said, "Blue tag. Red tag. Purple tag." He repeated what I said each time in a small voice. It made me wonder if Nikko is conscious about how his voice sounds. I wonder if he is really shy, or unsure if he said the right thing when asked. It reminded me all the more to keep encouraging him to talk and give him the vocabulary he needs to make communication successful.