Tuesday, December 28, 2010

Upspeak at bedtime

This has been our bedtime mantra after I/we sing the Good Night song:

Me: Kiss mommy good night, and hug, and say...
Nikko: Gwa lalight, boppy.
Me: Good night, NikMe: Kiss mommy good night, and hug, and say...
Nikko: Gwa lalight, boppy.
Me: Good night, Nikko... what else do you say?
Nikko: I la YOU, boppy.
Me: I love you, Nikko. Sleepy time.
Nikko: Shweepy time.
Me: Good night, Bow Wow (talking to his stuffed dog).
Nikko: Gwa lalight, Bow Wow.
Me: Good night, Nikko. Sleepy time.
Nikko: Shweepy time.

Over the last few days, and evolving tonight, as we went through the bedtime mantra, every time Nikko would say his part he would end his sentence on an upswing. What the heck is an upswing/upspeak? Well, do you remember in the 80's when Valley Girls would talk? They would say something that sounds like this: OMG, remember that day? When we went to the mall? And I was on the phone? Like forever?" When Nikko said good night, it sounded like this:

Me: Kiss mommy good night, and hug, and say...
Nikko: Gwa lalight, bopPEE?
Me: Good night, Nikko... what else do you say?
Nikko: I la YOU, bopPEE?.
Me: I love you, Nikko. Sleepy time.
Nikko: Shweepy TIME?
Me: Good night, Bow Wow (talking to his stuffed dog).
Nikko: Gwa lalight, Bow WOW?
Me: Good night, Nikko. Sleepy time.
Nikko: Shweepy TIME?

And it sounded so funny to me, but what was really amusing is that in the dim light of the room I could see that Nikko was smiling as if he was knowingly joking with me by talking in an upswing. I think he could tell that it was funny. That level of awareness made me smile, too. He's been really jokester-like lately, and that's awesome.

Sunday, December 26, 2010

Christmas Day

Merry Christmas! We survived the day with only two major meltdowns from Nikko, and the kids made out like bandits. Last night I put together the Cars parking garage and put a box over it + wrapped it. I didn't realize a lot of other parents do this too, instead of just let the kid open the box and then spend the better part of the morning putting it together. This garage was much simpler than the one made from particle board I got two years ago: totally snap-in plastic, no screwdrivers needed. I don't know if it will last the year, especially if anyone tries to sit/climb on it, but I think it will be ok for a few months. I hope. Overall, the kids had a very good day and remained in good spirits, but here's the evolution of the meltdowns:

#1 - Ronin was very pleased to get Monster Truck Frightening McMean/Lightning McQueen from Santa and he played with it vigorously. I got Nikko the Monster Truck Tormentor/Mater so he could play side by side with Ronin. The only problem was that once Nikko saw McQueen, he wanted it. And that was it. Ronin was crying and trying to get away from a relentless Nikko, and I had Nikko locked in an anaconda grip trying to open other presents to redirect Nikko. Nikko was crying, yelling, pushing me away and struggling full force. I had a flashback to two Christmases ago when the boys fought over one fire truck for the longest time, and I almost wanted to start crying. I super-pleaded with Ronin to let Nikko play with McQueen, trying to give Ronin the Mater truck, and even though he refused for what seemed like the longest time, Ronin gave in and let Nikko take McQueen away. Nikko instantly calmed down while Ronin started ramping up the crying. But within a minute, Ronin resigned himself to Mater and was soon playing with other things. Within ten minutes of that episode, I saw that Nikko was content to carry around a plastic ice cream cone (Dairy Queen) that I had put in his stocking and also moved on. Crazy times.

#2 - We spent the afternoon at the Penepacker's house. At presents time, Ronin got the Wrastlin' Ring/Wrestling ring from Cars and Nikko saw that it came with a miniature McQueen. He started getting hyper about that. Of course, with all the new toys around Nikko was getting worked up internally, but I can never tell just from looking at him what he is going to get obsessed about. Then he unwrapped a gift from Pat & Anna, a Play Doh cake making set. Nikko was hooked. He whined and wailed to open it, and I resisted because I thought he would just get more upset once he saw that it was filled with canisters of play doh and not already put together as cakes. Nikko made quite a scene and Denis finally took our screaming son away from the room with the Play Doh. At first he changed Nikko's diaper, but ultimately they ended up in the basement and opened the box. It came with a round turntable to affix cake bases, and Nikko seemed content with this. Later on he was able to walk away from the cake stuff and focus on something else.

A lesson I learned here, and saw in practice, was that Nikko may want something from someone else, but he just needs some time to look at it or feel it or carry it around, and then he'll most likely give it up. This is a hard thing to describe to Ronin in the middle of a toy-fest, however.

And throughout the afternoon, my dear Audrey had the runniest nose and was getting tired and bratty. She wanted to be carried a lot and I couldn't oblige her every time. I will try to give her more patience tomorrow. :)

Thursday, December 23, 2010

Catching up this week

Wow, it's Thursday. That's a long stretch of no entries since Monday. The kids are battling each other much like tag team wrestling. Audrey vs. Nikko, Ronin vs. Nikko, Audrey vs. Ronin. Tried using a timer to share toys, not working well. Trying not to shred my voice, not working either. I feel like I'm getting sick, after caring for sick kids all last week.

Yesterday (Wednesday) we went to Nikko's speech therapy. It was at 9a so I had to get us out the door by 8:30 tops. I did ask Lisa the ST if she had a later slot available and she DID, 10a. But we have one more 9a session to go before we can switch back to 10a. Thank goodness! There's too much pressure for a 9a session to get all the kids fed, dressed, changed and out of the house by 8:30a. Nikko was eager and excited to be at speech, and he easily walked off with Lisa when it was time for him to go. I think he was anticipating the big motor room and the fun he would have. Lisa asked me if Nikko has ever used a weighted vest because he leaned toward doing more crashing in the motor room. She thinks that if he used one, he might be able to do more in the room when they sit down for speech things. I have to remember to mention this to Mrs. I, the OT from school. I wonder if I should get a weighted vest and give it a try around home. He wouldn't (refused) to wear one when he was younger, but maybe it will be different now that he's older. Maybe.

At 1p Nikko had an ABA session with Rebecca, a new senior line person replacing Jenna on Wednesdays. Jenna will be our Team Leader now. Rebecca is also a special ed teacher so she is familiar with ASD kids. I could hear Nikko giving her a hard time, however, and he ultimately resisted her for 45 minutes. "I didn't realize how strong-willed he was," she stated. But Rebecca was also working with Nikko for the first time, and he wasn't used to her. He needs to learn that she means business and for her resolve I am grateful. She was able to give me good feedback after the session and it was informative. Rebecca seemed like a pleasant person and because she's a professional I look forward to working with her. Nikko will have to get used to her. :/

I can hardly wait for Saturday morning to come. These kids need their NEW TOYS so they can get out of each other's hair! I think Nikko will like the Cars parking garage, I just have to put it together. I know Ronin will love his Monster Truck Lightning McQueen. He doesn't know about his electric guitar either. And I think Audrey will be happy to get the Jesse doll from Toy Story. She loved carrying around Maya's Jesse, so I hope she'll be ok if she has her own.

Tuesday, December 21, 2010

Blame it on the moon

Uneventful weekend mainly due to Audrey having a fever since Thursday. Today (Monday) it broke and she was in good spirits except for a lingering hacker's cough. Unfortunately she threw up in the car right as I was getting everyone buckled in for a Costco run. I debated for 15 seconds whether to bring her inside for a full change but gave up when I pictured the boys getting antsy in the car without me. I mopped her up with paper towels and pressed onward. I thought our Costco outing would turn out fine because I gave Nikko a candy cane and the other two had lollipops right before we hit the checkout lanes. As we walked toward the exit I saw Nikko getting antsy. I think he saw the Costco cafeteria and wanted to sit down, possibly have a snack of churros. It's that darned memory he had the last time we did that. As I breezed by, he got whiny and stood near the tables. He wouldn't walk toward the exit so I had to usher his crying self out the door. He decided to go noodleman on me and so I had to pick him up and balance him on the handlebar of the shopping cart. I paused in the large, echoy foyer to put on the kids' hats and zipper their coats, Nikko doing his high-pitched wailing. It was worse outside because he wouldn't walk. He actually tore away from my grip and ran a few steps back toward the store while in the parking lot and that irritated me. As I tried to pull him by his arm, a guy who corralled shopping carts stopped to give me my wallet, which had fallen out of my back pocket during my attempts to drag Nikko across the parking lot. I was really thankful to that guy and later thought about the enormity of losing my most valuable plastics in the snow. Note to self: no longer put wallet in back pocket during excursions with Nikko. Nikko was screaming the whole way to the car so I was happy to deposit him into his seat and strap him in. He didn't calm right away and it was only until I got to McDonald's did he settle down. I really don't know if the cafeteria was the thing that set him off. I think it might have started right after I left the checkout lanes. I steered the cart toward the tables and had to move things around in the cart to make room for Ronin to sit, since he wasn't going to sit up front with Audrey. The boys sat at the cafeteria table (with Audrey telling me to put her down, but I refused) while I shifted cart items. I put Ronin in the cart and Nikko was trailing us. I think he thought we were going to sit down and eat. (sigh) Or I can blame it on the eclipse of the moon tonight. But it's overcast outside and I don't know if full moonbeams that don't permeate clouds is as effective as full-on full-moon craziness. Whatever.

Kathy had trouble with Nikko during ABA this morning. She said that even though she read Sarah had done this, Kathy took the book to Nikko near the toy kitchen to complete drills instead of making him sit at the table. I can almost hear Maria telling them that they are supposed to make him go to the table no matter how much he refuses, but Kathy has admitted that as of late, Nikko seems to be more defiant about sitting at the table to do things, and he seems to be backsliding in this matter. That's kind of a bad thing to hear, so I hope in next week's team meeting, to be run by Jenna, that this issue gets addressed. When two of the three ABA people working with your son are having similar difficulty, then something is amiss and needs to be fixed.

Winter break has started until January 3rd. I think the kids are already bored so I may have to break out my copy of Toy Story 3 so that they are entertained until Christmas arrives at the end of the week. I don't blame them, really, but they are getting on each others' nerves as well.

Friday, December 17, 2010

Team(s) Meeting

12/16/10 School report: Speech - Food vocab - starting to say "I don'tknow" with just a look from me. Worked on "I see____", greetings.
Bathroom - Nikko pooped today. It was soft and mushy. It had a strong odor.

I'm behind by two days. On Wednesday we had the school/ABA team meeting. The kids played and tore up the room while we talked. Ronin didn't go to school that day, and later that evening Audrey came down with the temperature.

We started by talking about what to expect next year. The teachers reiterated that IF the current sped plan stays the same, then it would be 1/2 self-contained and 1/2 inclusion. Kindergarten is half-days, five days a week. They have what is called an Extended Day Program for SN kids. This is 4 days a week, 1/2 days. For example, a day would be 1/2 day K, then lunch plus recess, then 1/2 day extended support. A school day would be from 9:20a-3:50p. On Fridays, K is only 1/2 day, no Extended Day Program following. In the ED program, the child would do discrete trials, independent workstations, centers, pull-outs for ST and OT, and ABA hours are offered. What made me feel better about hearing this is the ED program would be tailored specificially to each kid, and therefore our IEP meeting later next year would be to outline Nikko's program. Whatever supports Nikko uses in ED are extended to K throughout the day. If he uses a picture schedule or aide, then that will also happen in the K part of his day. This is good news. And a key part of our meeting.

We talked about what kind of things the school team and ABA team could do to help Nikko along in his goals. Linda gave some good tips to the teachers, and Ms. Winters was able to share what speech successes Nikko has been achieving. Things I can keep working on at home with Nikko is still being his own personal commentary, add a strip of velcro to our daily schedule and have Nikko move the pictures there after completion of a task so that by day's end he can point out to his dad what happened throughout the day (in a linear fashion). Speech advice shared between the teams was to ask more Wh-- questions with picture cues, more "I see____" questions (instead of I Want ____) and more My Turn/Your Turn. OK, I can deal. I was satisfied with the outcome of our meeting.

Tuesday, December 14, 2010

Sickie boys

Nikko's BMs today were still kinda splattery. I called the gastro's office and a nurse got back to me, but will hopefully talk to the doc tomorrow. To make matters worse, right before ABA at 4:30 Nikko fell asleep on the floor. I had to wake him up prior to therapy and he didn't really want to get up off the floor. It wasn't until later that I saw he was not feeling great. He had zero appetite and resorted to the fetal position. BAD SIGN. He slept through dinner and woke up with a slight fever that's bouncing around 101.2. Thank God he didn't throw up this evening, but he also didn't want to move around much. He watched WALL-E while I gave the kids their baths. Nikko seemed to perk up slightly when Denis came home from work, but then he headed off to his bed for nighttime stories and didn't get up again. The good thing is that Nikko was still lucid enough to read Shiny Dinah and prayers from the prayer book to us. No songs, though.

The other problem is Ronin. His cough started yesterday and has really come out today, despite an albuterol treatment yesterday before bed. Tonight is worse than yesterday. He's thrown up twice already, meaning I've changed him AND his sheets twice. I gave him a treatment at 7:30p, then another one at 10:45p, which is earlier than I would have liked but his croupy cough is getting bad. He's not wheezing, so now I'm hesitant to give him albuterol again. If he gets even worse tomorrow, I may have to consider taking him in to the ped for possible steroids. I would hate for him to miss school, but if Ronin starts barking at school then the nurse will just want me to pick him up anyway. And if Nikko is still running a temperature, I'll have to keep him at home as well. GREAT.

Monday, December 13, 2010

Sitting still for the pageant

This afternoon we took the kids to watch the Penepacker girls perform in the school Christmas pageant/play at the Playdium (an old skating rink). I expected that we would get relegated to the back of the auditorium, but figured it might be loud and other kids might be running around as well. When we walked into the room and saw the stage filled with cast members in front of their family and friends, I also noticed that the back of the room was empty, void of running kids or crying babies. The usher told me they just started the play, and I was afraid to walk up the aisle where my mom and my sister were waving at me to join them. I cringed at the thought of Nikko wanting to get up out of his seat, jump up and down, or make loud squeals. I also didn't know if Ronin or Audrey would sit still. We rolled the dice and joined the rest of the family.

Nikko sat next to me and did GREAT. He was mildly interested in the play and didn't want to sit in my lap even though I tried to boost him to see the action. He was content next to myself and Chester. He looked at the people behind him a lot. Then he got hungry for goldfish crackers when he saw me giving some to Audrey. Other than starting to beat the back of his chair with his hand, Nikko was a model citizen. It was Ronin that was a touch troublesome, talking too loud and whining slightly. Audrey was also a bit fussy but was mesmerized by the singing. Lucky for her, she looked cute in pigtails and a pink flowered headband. We really did survive this outing, the first of its kind since we tried to take the kids to Easter service two years ago.

One last note: This past week was the 3/4 capful of miralax. It took 2-3 days for Nikko to start pooping more. Midweek heralded larger volumes, still soft. But by Friday night into Saturday, the poop looked like a smattering. It was fibrous and the volume decreased. I listened to Nikko's breathing and at times it seemed hollow, like when he's trying to pace pushing something out but nothing's happening. By this morning (Sunday) I decided that he'd have to do something more or I'd unplug him. Breathing happened again, so I unplugged him. The bowel movement was big in volume, but it wasn't hard at all. It was soft and mushy. Why wasn't he able to push all of this out? Instead, prior to unplugging, it was coming out in splatters. To me, this meant that even the soft poop was backing up, despite the increase in miralax. I'll have to tell this to Dr. Nelson tomorrow and she what she says.

Saturday, December 11, 2010

Maria's visit

Maria came to work with Nikko today. We had a good conversation update prior to the session. We'll arrange a team meeting with everyone either over the break or right after, to make sure everyone is on the same page regarding *how* to do the drills. Jenna is going to become the Team Leader and will take over Maria's roll in Nikko's home program, but if I need to get counsel from Maria I can still contact her. I felt empowered after our talk and feel better about reviewing materials before next week's meeting. Maria commented on how Nikko is still improving, showing his intelligence in the drills as well as in his resistance to non-preferred activities. The boy just needs to acquire more language, in my opinion.

On the poop front, he is in the middle throes of cleaning out his system, for sure. I'm changing poopy diapers frequently, and the volume is definitely more than the diapers of even last week or the week before. I wonder if he will stabilize by Monday, which is when I intend to call Dr. Nelson with an update. (BTW, I was surprised to learn that Maria's son also sees Dr. Nelson, and Maria regarded her highly. That's a big plus for me.) It's just the frequency of the diaper changes that I'm not looking forward to in the next month, which is not really that different from what I was doing except now there's a little more hope.

It's the weekend and there's nothing major on the schedule except for a holiday pageant of the Penepacker girls. It's going to be at the Playdium, an old skating rink turned assembly hall, so it will be loud and echoy and possibly crowded. I hope the kids will be ok in that environment, as they'll most likely be running around in the back of the hall. The weather tomorrow is supposed to be 36 degrees and rainy. I wonder if there's somewhere at all I can take the kids so they're not too bored at home. That's always the problem.

Friday, December 10, 2010

Un-learning behavior

School report: Speech - I see____, greetings, vocab, what ?'s. His new favorite words are refrigerator and microwave!

Nikko had ABA with Sarah this morning. I told her about my conversation with Jenna the day before, about trying to be more firm with Nikko in regards to getting him to sit at the table. He's been doing escapist moves with Sarah and will not go to the table for her anymore. She had been bringing the drills to him in order for him to work, but Jenna and Kathy don't seem to have as much a problem with this. That's not to say they don't have a problem with Nikko coming to the table at all, but Jenna is more firm in getting him to come over to work. So Sarah did what she could, and they didn't finish all their drills because Nikko didn't want to work. I guess he will have to un-learn not sitting at the table for Sarah, that's all. Sarah remarked that he was very intelligent and bright, and could probably see that he could get away with his escapist routine with her.

The kids went to school and came home late by almost ten minutes. The driver was apologetic because Miss Veronica wasn't there, and neither was Miss Chris. It was another aide, a nice lady but not as comfortable yet with the route. The boys seem to take advantage of getting a nap on the way home, which is fine because they are the last kids on the route.

This evening I was going to head out to meet up with the girls regarding some holiday gift cards. I gave Audrey a bath and informed Ronin that I would be going out. All three kids seemed to take my leaving very well, all saying, "G'byeeeee Mooommmmy!" with enthusiasm. Nikko came up to me to give me a good bye kiss and didn't start whining at all.

Thursday, December 9, 2010


School report: OT - Obstacle course & eye-hand coordination balloon activities. Worked on name printing at wipe off board & practiced cutting.
Speech - Greetings, what ? with & without pictures, very imitative & good volume.

This morning I took the kids to the Arlington Pediatric Therapy clinic for Nikko's first private speech visit. We must have entered through the back door because we were guided all the way to the front, whatever the front actually looked like from the outside. The hallways were painted very vibrant primary colors and there was a flurry of activity because it was in-between periods, I was told. I even saw the mom of Tommy and Shamus, Nikko's classmate. She saw me, too, and we smiled across the craziness of the lobby. We met Lisa, Nikko's speech therapist, and were led back down the hall to a speech room with table, chairs, mirror on wall, and toys placed high up on shelves. Lisa was very calming and inquisitive as we sat and chatted about Nikko's history. Meanwhile, Ronin and Audrey were tearing apart into Duplo blocks and causing a small ruckus. Nikko was busily playing with some block cars and jargoning to himself. At the halfway point, Lisa suggested Nikko try the slide in another therapy room so we trekked down the hall again. Only Nikko was allowed to go inside so I hauled Ronin and Audrey back to the room, kicking and screaming because they caught a glimpse of the therapy room outfitted with slides and swings and mats, and of course they wanted to go there, too. I was anxious about leaving Nikko in that room with Lisa and other random strangers for the first time, but I didn't hear his usual whining and protests when we left the room. Then again, Audrey was screaming bloody murder all the way back to the room so she could have drowned Nikko out.

Lisa and Nikko came back into the room and Audrey decided to melt down horribly. It didn't deter Lisa from talking to me about Nikko, saying that he actually had so much potential. He didn't protest at all in the therapy room, didn't like the swing but was interested in the slide. In fact, he tried to open the door once they were back inside the room and Lisa had to sit in front of it to keep it closed. That upset Nikko and he whined and started to cry. Lisa said that he's in a good spot because he's scripting and can actually say words, but something is keeping him from fully utilizing speech. He seems to not have made the realization that speech will get him what he wants. He also doesn't want to work too hard, would rather resort to the other forms of communication he's currently using like whining or pulling me to get what he wants. But Lisa was still very optimistic about Nikko, saying he's on the verge, that all that language is right there ready to come out. She went ahead and recommended Nikko for speech 2x/week to start. We can see how it progresses and then reduce it in the future.

The kids were being so challenging in the lobby while I tried to get my checkbook out to write the co-pay that I whipped out three lollipops and told each of them to take one and GO SIT DOWN. And they complied. They actually looked like little angels sitting in their chairs slurping on lollipops. When I finished, I whisked everyone back into the Pilot and headed home for lunch. It was a lot of work making this outing and I am exhausted looking into the future of doing this TWICE a week. I guess it wouldn't be any different if the kids were taking a swim class during the day, or any other classes to be chauffeured to. It's still a draining thought. I got the kids fed and literally turned them around to get them ready for the bus to school. After we shipped them off, I decided to take Audrey to gas up the Pilot and get some quick things at Costco. I could tell she wouldn't survive another trip to the grocery after that so we headed home.

The boys came home from school and then Nikko had ABA with Jenna, another good session according to her. We chatted at the end and we both concluded that Nikko seemed to just have a bad two months, October and November. He seems to be on an upswing in terms of behavior. We'll still have a meeting next week at the school to adjust his programs to be more language-based. Nikko has been pretty jolly lately, and for that I am really grateful.

Monday, December 6, 2010

Gastro visit

This morning I took the kids to school for the Parent Discussion group. We were a tad early, although I felt like we were running super late. The kids were the first ones in the classroom. I came in to help them take their coats off. Nikko wasn't frazzled this time around. In fact, he was eager to dump his coat and start playing. I took my cue and left the room quickly after that. It was nice to be in the company of adults without any kids pulling at me, and the hour went by too fast.

Mom came at 2pm to watch Ronin and Audrey so I could take Nikko to the gastro. It was on the far side of the Glen. Good thing I called them this morning to confirm their address, otherwise I'd be wandering Glenview North Shore Hospital with no one knowing which doctor I was looking for. We arrived, filled out the paperwork, and got height (41") and weight (44 lbs) by 3:15p. When Dr. Nelson came in, Nikko was munching on his umpteenth lollipop. He wouldn't sit on the exam table, and since she was going to feel his tummy I had to put him in my lap while she held onto his legs. He struggled mightily, whining and crying. It's a good thing he didn't have a more intensive exam because we would need more people to hold him down. I told her about everything I've done with him since the summer, about our bouts of miralax, about how he has soft poops but difficulty pushing them out so there's a blockage. She was kind and listened. I asked her if she had worked with other kids with autism and she said that she had. Dr. Nelson said constipation was common with ASD kids, but I already knew that. She told me that the colon stretches out and the blockages just pile up, so she recommends upping the dosage of miralax to 3/4 capful to clean him out. THEN, we'll work on building fiber back in. And sometimes, some kids end up staying on miralax for a long time. However, they can outgrow it. She said that the colon is pretty long, so the blockages might not only be at the end. That's why she wants to clean him out completely. A week on the higher dosage, then a phone call update to see if tweaking is needed, and then keep him regular for a month. THEN the rebuilding. She said not to use Benefiber or the MoPo at this time, because the psyllum fiber is a bulking agent and that's contributing to the blockages, it cancels out the work the miralax is doing. Ok, fine. I think Dr. Nelson could hear my anxiety in my voice about not understanding why Nikko is the way he is, so she said that she doesn't have a crystal ball to see what will happen, but we'll take it in steps and the first step will be to clear out his system. She also mentioned that he should be tested for celiac disease to rule it out, that it's not common in ASD kids, but constipation is a symptom of it, thusly leading to a gluten-free diet. On Saturday I think we will take all three kids to Northwest Community Hospital for a triple blood draw, since the younger two need a draw for their RAST test from the allergist.

Heavy sigh.

But I felt good about the visit. The doctor didn't tell me I wasn't doing the right things, she seemed to want to guide us with first steps. The miralax will help clear Nikko out, I hope, within a week at the higher dosage. We'll see.

Flipping out

Quick entry. Nikko had some poop in the later morning to midday, but nothing into the evening. We go to see a gastro tomorrow afternoon. Crossing my fingers that she can give us some direction beyond miralax.

This evening I took the kids to the in-laws so that I could meet up Denis at his best friend's wedding reception. Nikko fell apart when I left, crying and angry. He tried to put on his shoes and coat, according to my MIL. He eventually calmed down and didn't erupt again. The other two handled it well until they got into some fights. Audrey was being a piece of work with them. Grrrr. I dropped them off at 5:00p and went back by 8:30p. Wasn't long at all, just enough to eat some spicy Indian food and have some adult conversation. Tomorrow morning we go to the school for the parent group while the kids hang out in the other room. Nikko will probably flip out again, but I'll give him kisses good-bye and hope for the best.

Saturday, December 4, 2010

Spontaneous speech

School report: Speech - requesting & "hi". Notes - Nikko was helper today. He knew all the weather pictures. When sending kids to snack, 1st one said "Sophie go play" on his own. Knew 1/2 names.

Is that another instance of spontaneous speech? Would that be two days [almost] in a row? I wonder what I can do to facilitate some spontaneous speech this weekend. It's snowing outside right now so I'll bet these kids will want to go play in it, even though it's only a dusting. We're expecting more, however. I'll see when we can fit this in.

Nikko was in a good mood today. I fed him the cheesy mac I made last night. He and Audrey like it, but don't like the ground turkey mixed in. He's also eaten less chocolate pop tarts today. This would all be good, IF Nikko had a significant bowel movement since I unplugged him Wednesday morning. But he hasn't. He had a tiny poop on Wednesday and Thursday nights, but nothing today or tonight. That's BAD. That means if he doesn't poop anything by tomorrow morning, I'm going to have to unplug him again. How does this happen? I think giving him less than 1/4 capful of miralax is backing him up. I put in a 1/2 capful tonight to try to give him one extra push by tomorrow morning. Don't know if it will work. On Monday, Nikko has an appointment with a pediatric gastro. Mom will come over to watch the little ones. I hope to bring information on Nikko's eating habits, miralax stuff, unplugging incidents, anything I can to let her know what's going on. I hope she is the kind of gastro that will listen and be open-minded. I wonder if she will just suggest more miralax. I need to know some WHYs and HOWs.

Friday, December 3, 2010

No complaints today

School report - Speech: Good hi! Worked on vocab, categorization, I see you!, I see___,I want _____.

No poop during the day, but Nikko ekked out a small one while on the toilet before bath time. I think the same thing happened last night. So now, I've got to make sure he has a bigger poop tomorrow since he was unplugged two days ago. He had ABA at 8:30am and had a good session, except that he didn't want to sit down. I wonder if the other girls are consistently having this problem during their sessions. I have to ask Jenna about it. He was also in a good mood when he came home from school today. No complaints.

Thursday, December 2, 2010

Snowing outside

School Report: OT - Swing, running, trampoline, and wheelbarrow walk. At table worked on cutting & printing name. Beginning to approximate letter strokes. Very happy and hard working today!
Speech - Really pushing the hi! Lots of cheering when he says it - be loud, high 5, say hi and see if he will do it at home too - like when he gets off the bus, dad gets home, etc.

This morning it was lightly snowing, really just a dusting. I looked out the living room window while opening the curtains. Nikko stood next to me and said, "Snowing outside." I turned to him and said, "Yes, Nikko it's snowing outside." He repeated it. I said, "And it's c-c-cold, Nikko!" I shivered next to him and he smiled. I was just floored that he independently said snowing outside. *wow!*

Unfortunately, as I watched Nikko move around this morning, I noted that he was still hunching over the sofa and table. I noticed that he was taking some sharp, deep breaths. That was an indicator to me that something was not right, that I would have to unplug him. I gathered my materials and told him we'd change his diaper. When he saw the tub of vaseline and the little suppository, he started to whimper and cry. I felt so bad for him, but tried to reassure him that I would help him and be there for him. Instead of holding him in my lap and forcing him to straddle me, I let him lay on the floor and bend his knees while I knelt in front of him. That seems to be more comfortable for him nowadays. I saw him shudder when he passed his poop, twice. It was soft and pliable, not hard, about four inches in diameter. He should be able to pass this kind of stool, but instead it's getting impacted. I decided to call Dr. Santiago for a referral to a pediatric gastroenterologist. There has to be something wrong inside, probably his musculature, that is not properly pushing his poop along. Thankfully she called me back later in the day and gave me two doctors to call, which I will do tomorrow. My poor Nikko.

His mood improved after that, and he went off to school in a good mood. He also came home in a good mood and continued to have a good ABA session with Jenna. It's boggling my mind, really, that the first three months of this year seemed to go downhill, but right now he's on an upswing. Or is he? Is he just having a really good three days back from Thanksgiving? OK, I won't kid myself here. I am going to request a meeting w/the teachers, Linda and Maria to talk further about moving Nikko along. I'm also waiting for a call back from Arlington Pediatric Therapy regarding speech therapy. I called them last week and figured the Thanksgiving break set everyone back a little, but time is passing and I really need to move forward with getting Nikko some speech hours. In fact, with Christmas break on the horizon, I need to increase the ABA hours as well. I should find out what the average number of hours the other clients are getting. 4.5 hours during the week is not enough for Nikko, I fear.

Tuesday, November 30, 2010

Too many toys in his hands

School report - Good day. He seemed happy to be back! Speech: We were trying to get him to say "hi" with high 5's to Mrs. K and Mrs. Biasco - he would do high 5 then look over his shoulder and crack up like - I am NOT saying hi! Too funny. Happened several times. Good job with body parts & requests. Imitated "I see ____" phrases. Louder volume today!

This was very surprising to read, when he didn't have a great morning. Nikko actually started the day positively and was in a good mood when Kathy came. But when we got downstairs, I had neglected to put the duffle with the bouncy house away and out of sight. Nikko saw it, knew what was in it, and apparently did not want Kathy to put it away. He was really angry, wailing and crying for probably a half hour. Kathy was able to coax him to the table and eventually he got focused and completed his drills. He was very entertained with some building blocks in one of the drills, and I don't know why. After therapy we had lunch and got ready for school.

Just before we stepped out of the house, I noticed Nikko was carrying a LOT of toys: velcro birthday cake, empty box of band-aids, two mini-dinosaurs and a "hand" erase top. I knew the bus driver wouldn't be happy to see all that so I tried to get Nikko to put some things down. No go. He would scramble to reach for the items, even though I made him say Bye Bye to them. Nikko was whining and crying when I took the dinosaurs out of his hands and shoved us out the door. We all walked down the driveway except for Nikko, who stood stubbornly by the door. As the bus came around the corner I grabbed Nikko by the jacket and pushed him down the driveway, crying. I shoved the two dinosaurs into his palm and was fuming but still led him onto the bus. I apologized to Miss Chris about the extra toys, but told her he wouldn't stop crying. I saw her buckle him in, red-eyed but quiet that he had everything in his hands. I contemplated calling Mrs. McCarthy to warn her of Nikko's mood, but hoped they would be able to handle him getting off the bus. That's why his positive report surprised me. That's great, I'll take it!

I'm still guessing regarding Nikko's poop. At bath time, after he had come home from swim practice, he had poop that looked rounder and was slightly more firm than the poop smears from the past few days. I wonder if the unfinished juice last night helped to make it so. His bottom is red but not angry, so I'll keep putting Desitin on him. Today's juice schedule seemed to go accordingly, he even finished the 1/4 capful miralax in the dinner juice. I wonder if he'll be soaked tomorrow morning because he was carrying around his juice bottle. I also still wonder if he's a bit impacted, despite the poop I've been seeing. I will have to decide in the next one or two days if I should administer something, or even try the Quecertin that my friend Cathy recommended in lieu of a suppository. Hmmmm...

Monday, November 29, 2010


It's been five days and I don't know if my theory is working. Putting miralax in Nikko's juice at dinner instead of breakfast sounded like a good idea, but the frequency and amount of poop has not changed. I've been watching Nikko for signs of straining and I haven't caught him in any obvious pain even though he retreats to Ronin's room or still hunches over the couch or ottoman. Therefore, I haven't unplugged him. This evening he did have a larger volume poop that was soft and I wonder if the MoPo is helping in that regard. Unfortunately, Nikko didn't finish his juice at dinner and so I wonder if he'll get a little stopped up in the next day or so. Plus, he went to bed with a red, itchy bottom. I keep slathering Desitin on him, and even put a layer of hydrocortisone this evening, so I really hope it doesn't turn into something worse before school. He'll have Kathy for ABA tomorrow and I hope he treats her well.

Nikko and I have been playing a variation on our tickle game. He asks specifically for "Cake" and then I say, "No more cake, only tickles!" and then I tickle him. He's been in a relatively good mood lately, even playing appropriately with dinosaurs when I've observed him unknowingly. But he still had two emotional outbursts within the last two days which I can't explain. I hope this week at school isn't affected by his itchy bottom. I also hope he will be able to concentrate at school and be productive.

Friday, November 26, 2010


We went to my mom's house for Thanksgiving lunch. She sang at the 10a mass and my dad was slated to work today, so lunch was at 1p so he could hang with us before having to leave at 2:30. This was, by far, one of the best Thanksgivings I have been to in the past four years/since having kids. What helped was that the kids were more self-sufficient in finding things to entertain them. They hovered around the kitchen a bit, but were able to play with toys in the living room as well as downstairs where the Penepacker girls were hanging out. Kind-hearted Rory was also playing with them so that was a bonus. I was able to help out in the kitchen with the food prep. Assembling the kids' lunch was not as nerve-wracking because we were able to accommodate their diets better. Ronin had plain mashed potatoes and loved it. Nikko scarfed down the buttery and creamy mashed potatoes. Audrey ate the mac cheese. And when the kids were finished, they went off to play with their cousins, still coming back to bug me now and again, but for the most part I was allowed to eat without anyone in my lap. Nikko waited around for strawberry cake and the others munched on shrimp chips. No meltdowns. Loved it.

We drove down to the other set of in-laws and arrived by 6p. My SIL has a new raised-ranch style house and it was very spacious. My kids were afraid of their dog Chase but thankfully were not debilitated like last time. Ronin was attached to Rex's Buzz Lightyear, Audrey was attached to a Jessie doll, and Nikko was carrying around a Toy Story 3 DVD cover. The most interesting part of the evening was after Maya finished entertaining the room with the karaoke machine. Audrey came up to grab the microphone and started singing Twinkle Twinkle Little Star. That inspired Ronin to grab the mike from her and sing the same song. What was also great was that Nikko grabbed the mike from Ronin and sang TTLS, garbled but distinctly TTLS. It was awesome! All three kids were hamming it up and TTLS became the song that would never end. We did diaper changes before leaving. This was the only part of the night that Nikko fell apart. He was holding a boat bath toy and a little plastic dog, which I made him bade farewell as we stood in the foyer to leave. Nikko protested loudly and was resisting leaving. I had to literally haul him outside from under his arms, sliding the toys to my SIL to put them far away. Nikko cried and wailed, but after putting on Toy Story 2 in the car he was more compliant.

Thursday, November 25, 2010

"I want" plus a new theory

I didn't get much of a chance to "sleep on it" (in reference to yesterday's depressing revelations) because Ronin woke everyone up at 6am. I suffered the rest of the day being tired and irritable, but caught a catnap with Audrey on the living room floor while Misty Island Rescue kept Ronin and Nikko occupied.

With Nikko's language therapy in mind, I was determined that when he wanted something, I would prompt him to say, "I want _____." Twice today he wanted a food from me and I would not give it to him unless he said "I want." He was requesting peaches and pizza, I believe, but not at the same time. When he would say, "Peaches, please." I would counter with "I WANT peaches please." He'd say part of the phrase, but I'd keep restarting it. Nikko caught on that I was forcing him to work and so he started to wail and scream, darting back and forth, down the hall and back to me as if he couldn't believe I wasn't going to give him peaches right away. I stuck to my guns, and in a big tearful yell-fest he screamed, "I WANT PEACHES PLEASE!" I praised him heavily and went to get his peaches. Simple. The same thing happened later for pizza, and it ended up in a screamed "I WANT PIZZA PLEASE!"
But you know what? The next time he wanted Mater's Tall Tales, or cheese puffs, he would ask for it by object, and then the second phrase coming out was preceded by "I want ______." He is totally capable of doing this. And maybe, just maybe, it is clicking stronger in his head that if he asks for something with "I want" before it, I will give it to him. I think he already knew this, but today I think he might be feeling the power of words just a little stronger. And to add insult to injury, Jenna told me after their ABA session that Nikko did AWESOME. He completed all the tasks, he was focused and had great eye contact. He was drawing lines straight down on a paper and it accidentally dragged onto the table. Jenna said he looked up at her with his eyes wide and his mouth opened in a circle as if to say, "Doh!" She had never seen him react like that, and I was warmed to hear it.

My Verbal Behavior book came from amazon today. I've got some reading to do.

I had a good feeling about Nikko today. But now I'm going to mess it all up by playing around with his bowels again. The miralax is working again, and by adding a little MoPo to the mix I can see his poop having that soft but fibrous texture to it. Starting tonight, I am going to test a theory. You see, Nikko's poop is soft and comes out all afternoon. He doesn't have just one movement and he's done with it for the day. It's akin to "leaking" out but not in a liquid form. "Squeaking" out? Hard to describe. But at every diaper change yesterday and today, there was poop. That's not normal. And I am trying to change it by adding or lessening that miralax, which is indeed a LAXATIVE so I have to remember that he will poop more frequently. So what's my theory? When Nikko wakes up, his diaper is poop-free generally, maybe up until lunch. And then he will have continual poops in his diaper throughout the afternoon. I don't want him to poop during preschool, because the kind-hearted Mrs. N has to clean him up. It's not easy wiping that kid, he's 40+ pounds. What I am going to try is switching when I give him miralax. It's usually in the morning, and I have to watch his juice like a hawk to make sure he drinks it all up. Many times he doesn't finish it until almost lunch, and that miralax is either not getting absorbed totally in one sitting so maybe that's causing this slow, dragging poopfest all afternoon. I am going to give him the miralax at dinnertime. In theory, when the body goes to sleep for the night, the digetive system slows down to a crawl. My hope is that the miralax will also slow down in his bowels, possibly working at a slower rate to form. And when it's time for him to wake up, the digestive system kicks into gear and he will poop in the morning. Maybe he will finish his pooping by mid-morning or lunchtime. Hopefully he will not need to poop during the afternoon. And I will reduce the miralax back down from 1/2 a capful to a 1/4 capful, to maybe reduce the frequency but still maintain some softness in his poop so he can pass it. In the morning, I will put at least 1/4 teaspoon of MoPo. I tried the digestive enzyme again this morning but it hardly dissolved in the juice so it looked lumpy. I don't even think Nikko wanted to drink it, and he definitely didn't finish it. At lunch I put a little more MoPo and put a teaspoon of fiber. At snack it was a drug-free cocktail. Then at dinner I put in the 1/2 capful of miralax. I really hope that he doesn't poop in the middle of the night, or that he doesn't poop upon waking up and then reach in to scratch because he feels uncomfortable. I will probably go crazy if he smears his poop in the morning, so I hope to intercept him. I've been setting the alarm for 7a every morning for this very reason, because sometimes he'll pee in his diaper and if it gets full while he's alone in the room, he'll strip. It's happened a few times already. I hope he's not waking too much earlier than 7a, because I don't want to set the alarm for 6:45.

So that's my plan. I hope it works. If it doesn't, then I'll be unplugging Nikko on Saturday or Sunday. Just so you know.

Wednesday, November 24, 2010

Mama Bear

Suffice it to say, I am even more depressed. We had our meeting with Nikko's and Ronin's teachers. It's always great to see them, and I was happy to spend just a few extra minutes with Nikko's teachers because Nikko needs more time. But after laying out the IEP goals, I just looked at them and said that overall the progress was slow. Painfully slow. There's some progress, of course, but he started out interested this year and now it has PLATEAUED. This is alarming to me. Especially as of late, Nikko's behavior seems to have backslid, possibly due to the infrequent constipation, but also for some unforseen reasons that no one can predict. The attitude when handling Nikko has literally been a "take it day by day" approach. I know the ABA team has been frustrated with Nikko's refusals to sit down at the table immediately and get to work. At school his attention span is fleeting. But the other alarming thing is his preparation for kindergarten. We loosely discussed what Nikko's options could be at the end of the year, but from what I am observing with my rookie eyes, I cannot fathom the idea of Nikko being in kindy next year, with or without an aide. I don't think he has the necessary skills, basically in any capacity, to sit in a classroom with many peers and retain a lesson being taught from a teacher at the front of a class. After lots of pondering and going back to my online village for insight, I believe that there will have to be changes made. Nikko can't keep going forward at the rate he is, because he's not thriving. After this Thanksgiving holiday, I will ask for a meeting with Linda H. and Maria to discuss how to reshape the ABA program, making it intensely language-based because in all reality, Nikko is not going to be able to move forward if he cannot communicate with anyone, peers or teachers. He can't express what he feels or what he wants unless prompted by an adult. It's such a hopeless feeling. I'm trying to shake it so that I can stay focused and do something.

Last night, after hours on the computer, I went to check on my babies before going to bed at 3am. I went into Nikko's darkened room and knelt down. He was facing the wall, snug in his blanket, and I started to weep. A year ago in December, Nikko started saying his first words. I was so elated. But I didn't jump at the opportunity to get him more help, to sign him up for private speech therapy in addition to the speech provided by the school. We signed him up for ABA and he started in January, but in hindsight I should have gotten him speech therapy since that was the biggest deficit. Heaving sobs and trying not to wake him, I put a hand on my boy's head and asked him to forgive me for not getting him better help sooner. Maybe his speech would be different today if I had gotten him intensive speech therapy. I'll never know. But now I have to fix it. I have suddenly become a Mama Bear, whether I wanted to or not.

Sunday, November 21, 2010

Preliminary Benchmarks + comments at end

I received Nikko's 1st trimester benchmarks update. I reviewed it and will post below, then follow with comments:

Each first semester benchmark is marked with achieved, making progress, introduced or not introduced.

By June 2011, Nikko will perform the following fine motor skills in 4 out of 5 trials:
1) copy and draw circle, cross and square
2) copy and draw an 8 body part person
3) copy and print first name.

State standard addressed: Use drawing and writing skills to convey meaning and information.
Present level of academic achievement and functional performance related to the goal: Nikko is able to copy and draw straight horizontal and vertical lines.
Benchmark or short-term objective: By November 2010, Nikko will perform one of the above stated skills.
Progress Report: Making Progress
Comments: Able to draw a circle and cross but square is emerging.

By June 2011 with visual cues as needed, Nikko will perform all steps of both the arrival and departure routines in 4 out of 5 trials.
State standard addressed: Show some initiative and independence.
Present level of academic achievement and functional performance related to the goal: Nikko can take off his coat and back pack and place them in the designated locations on most days, needing occasional reminders.
Benchmark or short-term objective: By November 2010, Nikko will perform all steps of the arrival routine using visual cues as needed.
Progress Report: Achieved

By June 2011, Nikko will be able to cut out preschool projects within ½ inch of the lines with verbal cues as needed in 4 out of 5 trials.
State standard addressed: Coordinate movements to perform complex tasks.
Present level of academic achievement and functional performance related to the goal: Nikko requires instruction on how to put on scissors correctly and then can repeatedly snip.
Benchmark or short-term objective: By November 2010, Nikko will be able to cut along an 8” by ½” straight line with less than 2 errors.
Progress Report: Achieved

By June 2011, Nikko will spontaneously use 4 word utterances to express his wants/needs in the classroom setting in 4/5 trials.
State standard addressed: Communicate needs, ideas and thoughts.
Present level of academic achievement and functional performance related to the goal: Nikko is inconsistently expressing wants/needs in the classroom with single words/signs/gestures. He often needs adult prompts to use his words.
Benchmark or short-term objective: By November 2010, Nikko will spontaneously use 2 word utterances to express his wants/needs in the classroom setting.
Progress Report: Making Progress

By June 2011, Nikko will demonstrate 3/3 of the following skills:
1) identify 5 emotions
2) demonstrate understanding of object function
3) demonstrate understanding of big/little, hard/soft, over/under, behind, top/bottom in 4/5 trials.

State standard addressed: Listen with understanding and respond to directions and conversations.
Present level of academic achievement and functional performance related to the goal: Nikko demonstrates understanding of happy. He is not demonstrating understanding of object function and prepositions.
Benchmark or short-term objective: By November 2010, Nikko will demonstrate 1/3 of the following skills: 1.) identify 5 emotions 2.) demonstrate understanding of object function 3.) demonstrate understanding of big/little, hard/soft, over/under, behind, top/bottom
Progress Report: Achieved.
Comments: Demonstrates understanding of object function with pictures.

By June 2011, Nikko will answer yes/no, who, what, where questions accurately in 4/5 trials.
State standard addressed: Communicate information with others.
Present level of academic achievement and functional performance related to the goal: Nikko is able to choose between two items with objects or picture choices. He is not yet answering yes/no or “wh” questions.
Benchmark or short-term objective: By November 2010, Nikko will answer yes/no, who, what, where questions accurately when given picture cues.
Progress Report: Making Progress.
Comments: Nikko is able to answer “what” questions but only with picture cues.

By June 2011, in the classroom setting, Nikko will demonstrate 3/3 of the following skills in 4/5 trials:
1) ask for help appropriately
2) respond to greetings from others
3) protest appropriately in 4/5 trials

State standard addressed: Communicate needs, ideas and thoughts.
Present level of academic achievement and functional performance related to the goal: Nikko requires adult prompts to ask for help and respond to greetings. He continues to whine or cry to protest.
Benchmark or short-term objective: By November 2010, in the classroom setting, Nikko will demonstrate 1/3 of the following skills in 4/5 trials: 1.) ask for help appropriately, 2.) respond to greetings from others, 3.) protest appropriately.
Progress Report: Making Progress
Comments: Nikko continues to need adult prompts to ask for help, greet others and protest appropriately.

By June 2011, Nikko will attend to a 7 minute teacher directed activity with no more than one verbal or picture cue in 4/5 trials.
State standard addressed: Begin to understand and follow rules.
Present level of academic achievement and functional performance related to the goal: Nikko attends to preferred activities but it can be difficult to maintain his attention to nonpreferred tasks.
Benchmark or short-term objective: By November 2010, Nikko will attend to a 7 minute teacher directed activity with no more than 5 verbal or picture cues.
Progress Report: Achieved.
Comment: Met for preferred activities.

By June 2011, Nikko will do 3/3 of the following:
1) expressively identify 5 shapes
2) expressively identify 8 colors
3) count 10 objects with 1:1 correspondence in 4/5 trials.

State standard addressed: Sort and classify objects by a variety of properties.
Present level of academic achievement and functional performance related to the goal: Nikko is able to match colors and shapes and color naming is emerging. He will imitate counting objects but he is not yet doing it independently.
Benchmark or short-term objective: By November 2010, Nikko will do 1/3 of the following, 1.) expressively identify 5 shapes, 2.) expressively identify 8 colors, and 3.) count 10 objects with 1:1 correspondence.
Progress Report: Achieved
Comments: Has mastered 3/3 skills.

By June 2011, Nikko will engage for 5 minutes in simple pretend play using props (cars, dolls, trains, kitchen toys) for their intended purposed in 4/5 opportunities.
State standard addressed: Begin to share materials and experiences and take turns.
Present level of academic achievement and functional performance related to the goal: Nikko is playing in many areas of the classroom and is just starting to play for longer periods of time. He is not yet linking play schemes together.
Benchmark or short-term objective: By November 2010, Nikko will engage for 5 minutes in simple pretend play using props (cars, doll, trains, kitchen toys) for their intended purposes given adult set up and verbal prompts as needed.
Progress Report: Making Progress
Comments: Nikko is engaging with more play material but is not including other children yet in his play.

Nikko is working. It's hard. And it shows. He was able to achieve the two functional goals (arrival routine, cutting with scissors) but all the other goals seem to pose challenges involving communication, expression and attention. His speech is slow, of course, and he is not using more than 1-2 words. He also needs adult prompts to use his words. At home, I can tell that he is searching for the right words to request something. I can see some progress even today. We started out the day with him wanting a pop tart. I emphasized that it was a chocolate pop tart. Each time he wanted one, he would come up to me and wait, and when I squatted down to his level to ask what he wanted he'd start a jumble of sounds in the same vein as the bread and cheese sandwich request, but it would sound like "Dohdododluluhluh choc-lat poptart?" I would reward these attempts, of course. Object function and prepositions are a problem area. Yes/no and the wh questions are problems. Asking for help, greeting, and protesting appropriately are problems. Pretend play and playing with others is a problem. JUST ABOUT EVERYTHING IS A PROBLEM. What can I give Nikko to help enhance his mind? What can I give Nikko to help fuse those synapses that are misfiring or flitting loosely in his brain?

Tonight I hauled out my big box of photo cards from Lakeshore Learning and started quizzing the kids on food items, animals and some household items. I lost Nikko's attention somewhere in the middle of the food, probably after Pizza. He left the circle and played on his own with his toys, sometimes looking up when I asked colorfully, "What is THIS?" or "What IS this?" or "WHAT is THIS?" He wouldn't always respond to his name when I called out to him. Meanwhile, Ronin and Audrey were eager to name everything and receive high fives.

I think we should start looking into private speech therapy for Nikko. And I just ordered a book on Verbal Behavior that should arrive this week. Nikko needs MORE.

Ugh, this is getting depressing.

I heart Nikko's preschool teachers

11/19/10 School report - Speech: We worked on greetings - happier about it today! Loud hi's. We worked on requesting, I see ____ & emotions.
Bathroom: Nikk had poop in his pull-up. It was slightly formed and soft. It was yellow and a decent amount. Nikko pooped a second time. There was less poop and it was soft brownish yellow. I put vaseline on his bottom. Nikko pooped a third. It was soft, brown & mushy. I applied more vaseline. -DN

And that is how great Nikko's preschool team is. They gave me such a detailed report because they know I need (prefer) to keep track of these things. I don't think I'll get that kind of teamwork as he progresses into the higher grades at school, but I'm so terribly appreciative of it now!

Friday, November 19, 2010

What's this?

School report - Speech: Greetings - great with high 5's - multiple prompts to say hi. What ? with pix, songs, body parts, reading a book.

This morning I greeted Nikko in his room. I think he enjoys sleeping under the big comfy Costco blanket I got for him. He hardly budges. It was early and no one else had stirred so I sat on his bed cuddling with him and asked him about the objects in his hands.
"What's this?"
"Strawberry Shortcake."
"What's this?"
"Birthday cake."

And later in the morning while watching TV, Mickey Mouse and Pluto were flashing on the screen. I pointed to the TV and said, "What's that?"
"Dog," Nikko said in reference to Pluto.
"And what's that?"
"Mickey Mouse."
The fact that Nikko is following where I am point to, then naming what he thinks I might be referring to, is awesome. :)

Sarah came for ABA and Nikko was lukewarm to start. She later told me that he was whiny in the beginning but eventually she was able to coax him back to the table. It was an ok session, and while Thanksgiving is next Thursday she said that she's not doing anything in the morning and could come over if I wanted her to. We aren't busy, either, so maybe I will take her up on coming over, even though it is a holiday. We won't be rocking and rolling until after lunch anyway.

***TMI ALERT***Nikko started out this second day of no poo. I told him that if he didn't have any bowel movement today, I would have to unplug him tomorrow morning and I really didn't want to do that. Don't know if that made any sense to him, but right as we were putting on socks and shoes I discovered that Nikko had a little poop in his pull-up. Not much, but it was something. That added to my stress, but I was glad he pooped a little. Later in the evening he had two slightly bigger poops, but they don't put me quite at ease yet. I think tomorrow (Friday) I need to see some serious poop in order for me to be comfortable with the 1/2 capful of miralax. Maybe 1/2 a cap is too much? Don't know yet. I'm giving it 1-2 weeks or one full poop cycle, whichever comes first. Man, only an ASD family would talk so much about poo!!

Thursday, November 18, 2010


School report - OT: Good session. Did lot of swing activities - Nikko would tell me when to go (push swing). Also worked on making faces and "Ni" in salt tray. Last - worked on cutting.

Don't know what the Ni is about, but maybe it's meant to be his name? In ABA, Kathy told me yesterday that Nikko was getting better at saying Yes and No to things. I was surprised because that's not something he does upstairs. I'll have to start asking him Yes or No and maybe using those PECS pictures from it. A new senior line person from MGB Services came to observe Nikko's session with Jenna. Her name is Rebecca. When Nikko saw this stranger (tall, too) come into the kitchen I think he got upset because I could see his furrowed brow and he started to whine like he didn't want to go work. Later, I was told that he still had whiny moments but overall he did all the work.

Sometimes Nikko comes up to me and starts leaning on me while asking for something that he's not sure he's going to get. It's almost as if he's trying to butter me up before asking for the questionable item. Those items in the past have been cheese puffs, candy and yogurt. Today it was yogurt. He's looking me square in the eye but also has a smile on his face (a sweet, sly smile) as if he can charm me into giving him what he wants. It's really kind of nice, except when it's candy he's asking for.

As for bowel movements, there were NONE today and so I'm on high alert. I put 1/2 a capful plus 1/4 teaspoon of MoPo in his morning juice and watched him until he finished it over a period of an hour. I sure hope his intestines are taking some time to solidify whatever he's eaten, the pizza and stuff, but if he doesn't have some kind of bowel movement by tomorrow afternoon then I'm going to worry until the evening and pray I don't have to take drastic measures. Again. And so soon.

Wednesday, November 17, 2010

Backed up again

*************TMI ALERT************
OK. Until I get Nikko to see a doctor, be it the holistic one or some other one, I am going to increase his miralax dosage to half a capful. I'll still put in the MoPo because there are probiotics in there. I will look into another probiotic if this doesn't work.

As I predicted, Nikko seemed to be backed up this morning. His poop has been peanut butter smears that are soft and not longer or thicker than my thumb. With all the fiber he ate yesterday, it had to be somewhere. I committed to unplugging him if he went into his therapy session unsuccessfully. He started out the session fine, but toward the end he got upset and crabby after Kathy took up him upstairs for a diaper change. I had to continue the unplugging after Kathy left. It took two big movements, not at the same time either, and not painlessly. :( What I saw was Nikko's poop wasn't rock-solid, wasn't resembling a small apple or even a pear. It was soft and mushy, like the wheat bread he ingested since getting sick. But why he needed help pushing this stuff out is beyond me. Why did it need a suppository to get the muscles moving? Is something broken in there? Maybe his motility is slow? And I'm looking up the definition of megacolon. How to fix that??

I sent Nikko to school in a diaper instead of a pull-up just in case he had another big bowel movement. He seemed to be ok when he came home from school, but he also didn't have any more bowel movements. I wonder if we can start at ground zero again. I hopped onto the computer tonight to do more research on constipation and miralax, and my conclusion is above. Other buzzwords I came across, as helpful tips or things to look up: CLO (cod liver oil), aloe vera juice, probiotics, blackberries, FloraBoost, Culturelle, motility, megacolon. I didn't get any notes in his backpack specifically about his bowel movements, and they sent back his diapers so I figure they are going to be ok if he continues to wear pull-ups in class. I'm really hating all this.

On another note, Nikko had swim class today. He's been vocalizing a lot, singing a lot, and asking for his new bread and cheese sandwich concoction by saying, "Ba la la la la cheese sandwich?"

Monday, November 15, 2010

Ronin's innocent question

Ronin and Nikko were sitting next to each other trying to put wooden train tracks together. They were also grabbing at train box cars, specifically the ones from IKEA that fit better under a tunnel than the Thomas ones. At one point Ronin and Nikko were vying for the same black engine when Ronin turned to me and said quizzically, "Why doesn't Nikko talk to me?"

I think my heart broke a little bit.

"Because he has a hard time talking," I replied. "But you can help him talk."

The moment disappeared when I helped them split up the trains between themselves and the boys focused solely on their own tracks. But in hindsight I felt a big pang of loss for Ronin, who didn't have the role-model older brother that he should have. It reminded me of Nikko's meltdown at the soccer birthday party and how he stuck out from all the other kids there. At four years old, it's really evident that he is not like other four year olds, lacking a bigger speech component, bouncing around and flailing his arms while bobbing his head in an attempt to regulate to his surroundings, or maybe bopping to the music in his own head. I'm just feeling really cheated right now.

Sick Day and Soccer Party

11/12/10 - School Report - Speech: Greetings, "I see a _____". Where ? with pix. Improved attention with books - will imitate phrases to describe pictures in story.

11/13/10 - So much for status quo. On Saturday morning I saw Nikko sitting on the couch watching TV. An hour later he was still sitting in the same spot. That's very usual for Nikko and I wondered if he was ok. He soon moved to the floor and was watching TV with his head resting on the floor pillow or blanket. Sometimes he'd chatter but mostly he was silent. During lunch he ate spinach ravioli but didn't stay at the table for very long. And in the early afternoon he looked sleepy and found a cozy spot on Audrey's big blanket in the middle of the living room. But after an hour nap he woke up and remained laying in the fetal position, arms tucked between his knees. I took his temperature and it fluctuated between 99.6-100, so that explained why he seemed so lethargic. I had to cancel taking the kids with me to a party at one of our GNO friends. Denis was slated to go watch the Pacquiao boxing fight at a friend's house, but I asked him to bring home some McDonald's because I felt bad that the kids didn't get to go to this party. And then at some point Nikko stood in the doorway of the kitchen and threw up his lunch. My poor boy was sick and lethargic, totally uncharacteristic of Nikko. He slept some more in the early evening and still managed to go to bed at the regular bedtime, but not without throwing up any remnant french fries. I wondered if the other kids would pick up whatever tummy bug he had, and worried that Nikko would have to stay home on Sunday while we were planning on going to a birthday party at a soccer facility. I gave him Tylenol and hoped for the best.

This morning, Nikko started out a little slow and in the fetal position again, but after breakfast he seemed to perk up and by lunchtime he was no longer sick-acting. I don't know what it was, but I'm glad it's gone!

******TMI ALERT****** My concern now is that during his sick day, Nikko couldn't hold down any food. He had one big pee diaper but no poop. Today he was incredibly thirsty at breakfast, and his hunger returned as he ate a few cheese sandwiches (cheese spread on croissants) and cheese slices on wheat bread. Both morning I had put miralax in his juice and a little MoPo, but he only had a small poop this afternoon before we went out. I thought he had pooped before we left the party because I smelled something, but his diaper was empty at bath time. That makes me worry because sometimes it will smell like he pooped but there will be nothing; the poop could be blocked and can be smelled when he's trying to expel it but it's not coming out. SO, that means if he doesn't have a proper bowel movement tomorrow then I'll have to try unplugging him on Tuesday. There's no way with the amount of cheese sandwiches he ate before lunch time that it would take more than a day to exit.

The soccer birthday party was at a fieldhouse facility that was geared specifically toward this concept. It was covered in AstroTurf, had air-filled barriers between fields and a bouncy jumper-house in the corner that was being occupied by another party of kids. Audrey wasn't thrilled to be there at first and clung to Denis, but Ronin seemed to warm up to the employee who was our host/Coach. Nikko also seemed interested in the activities at first and I ran beside him during the drills so he would be able to appreciate how FUN everything was. The birthday celebrant was a cute, 2-year old whose father was former co-workers with Denis. I didn't know any of the other parents or kids so I concentrated solely on our kids. Ronin kept asking about the bouncy jumper but I told him it probably wasn't something we could visit since it was flooded with kids from an adjoining party. The problem started when Nikko took full notice of the bouncy jumper. He wanted to go to it. He kept pulling me toward it. He started to whine and jerk my arm harder. Redirection to another part of the field house wasn't working and he was getting louder and screechier. Thank goodness Denis was able to stay with Ronin and Audrey so I could give Nikko my full attention at trying to placate him, giving him deep pressure hugs and looking to engage him in soccer ball fun. I took Nikko outside at one point just to get some air and this was at the height of his screaming. Nikko was squeezing his eyes shut and screeching through his teeth, flushing and fuming. We went back inside and again I took him to he opposite corner of the field house, away from the crowds. Thankfully he wasn't trying to bolt away from me and head helter-skelter to the jumper. I put him on an air-filled bumper and teeter-tottered with him, giving him a tissue to wipe his eyes and nose. He took it from me and I think it was the start of calming him down. I saw that the Coach was blowing bubbles for the kids and was able to coax Nikko to the fringes. At the same time, the loud generator used to air the jumper shut off and it was deflating. I think Nikko saw the deflated jumper and thought it was broken. When the Coach started his finale by involving most of the kids in a parachute game, Nikko was calm and accepting of the tissue to wipe his nose repeatedly. I'm glad we didn't have to leave the party. There were other kids there, mostly three and under except for a few slightly older boys, but Nikko's tantrum wasn't looked at by many, thank goodness. I had also put on my blinders so the only thing I was focused on was Nikko. I would normally be in a panic about Nikko's tantrum, but because I knew that the other two kiddos were in Denis' care it made things much easier for me. By cake time Nikko was fully recovered from the tantrum.

Wednesday, November 10, 2010

PEPS and poop (ugh)

11/9/10 - School report: Speech - body parts, greeting, worked on "I see ____" walking through the building. Worked on "what" questions with picture choices.

Last night I went to the monthly PEPS (Parent Education and Parent Support for Special Services) meeting. There were two speakers there, social workers from both the Lyons and Westbrook schools. The main topic was regarding peer interaction. It was nice to hear other moms talk about their school situations with their child, but I also felt some anxiety when thinking about how Nikko may or may not have friends in the future. Socialization is so crucial to ASD kiddos, as well as the academic component. I tend to drill on vocabulary, numbers and colors, but it's equally important to make Nikko interact with other kids. Thank God Denis has Nikko enrolled in a swim class, and thank God the neighbor kids understand that Nikko is different when my kids play around with them. They are big-hearted kids, that Brianna and Alex, and I am eternally grateful for their kindness toward all my kiddos. Anyway, I hope to attend the next meeting in February and learn more from the moms, especially the ones who have older children. I'd like to get some insight into what Kindergarten and 1st grade would be like for an ASD kid in this district.

11/10/10 - School Report - OT: working on sequencing 5 part obstacle course. Did lots of movement and heavy work activities. I sang louder than Nikko and he looked at me strangely and then stopped his vocalizations. Also worked on cutting & drawing. *Making clicking noises.

Yeah. The clicking noises. He sounds like he's trying to speak like a tribal member from somewhere in Africa. It's some kind of verbal stim and he seems to insert it into his daily routine when he's transitioning between rooms or activities. He'll start clicking when I'm trying to ask him what color something is. It's like a replacement for "Ummmmmmm." Maybe he likes how his tongue feels coming off the roof of his mouth. But then what about the random hissing sounds he also makes? It sounds like he is gritting his teeth and trying to push air and spit through them. The hissing seems to happen when he's starting to get motoring and physical. At least he's not drooling excessively.

Today at 4:10p I got a phone call from Mrs. McCarthy. She told me that Nikko had a bad day at school. He was unfocused and distracted, wanted to just sit on Mrs. Napoleon's lap and cuddle, and he can't always get what he wants so cuddling was out. He just wasn't cooperative today and she knows that I like to keep track of these things so she gave me a call. (What a great teacher. *smile*) I wondered if he would be in a terrible mood for Jenna since he had ABA when he came home. I thanked her and kept wondering if he was constipated. How could he be? He was having poop throughout the day even if it wasn't a lot of poop. I realized that I had been trying so hard to get the MoPo into Nikko's juice, adding 1/4 of a teaspoon and really mixing it well, that for two days I didn't put any miralax to accompany it. I have seen him "perching" over the couch or table, but am still able to get him to sit down to eat if I pull out his chair so I didn't think he was in pain. Maybe he really is. His session wasn't great, either. Jenna wrote that he was whiny but when she got him to sit down he was able to complete his tasks.

11/11/10 - At 8am I heard Nikko grunting in the living room. I looked around the corner to observe him and he was hunched over the ottoman with a slight strain on his face. I was crestfallen because Nikko was constipated and Sarah was coming over at 8:30 for ABA. I really hated to have to unplug him before a session but knew that I had to get it going or he could have a very unproductive time with Sarah again. I started the suppository at 8:16a and held Nikko facing me in my lap until he could have a bowel movement. He didn't want to go willingly. Sarah knocked on the screen door at 8:30a and I had her sit in the living room with us, watching Handy Manny while Ronin and Audrey were doing silly stunts amid a screechy, whiny Nikko being held in my lap against his will. I was very apologetic to Sarah and I wondered if she had ever seen anyone do this to their kid before. I hope I didn't look like a lunatic mom. It took another 15 minutes but Nikko painfully passed a big poop. I dried his tears and tried to soothe him and change him, told him to go drink some juice before we all went downstairs for therapy. Luckily, he went willingly with Sarah and was not acting like he hated me for putting him through pain. Ronin and Audrey were fighting and crying over some stupid Lego Duplo blocks so I had to contend with them upstairs. Nikko's session went well, according to Sarah. She told me that he didn't want to sit down so she brought the drills over to him, and he was still able to accomplish them. Right when they finished he had another bowel movement, a messier one which I had expected sooner than later. Nikko was in a good mood when he came upstairs after ABA so now the universe is back to status quo and I have another chance to screw up his constipation progress.

Monday, November 8, 2010

MoPo ***TMI ALERT***

********TMI ALERT********
Something's happening. I can see it, but not sure what it is.
The Motion Potion came in the mail on Saturday. It took about a week to get here from Australia. It's from a company called HealthKultcha and the label reads: Motion Potion. Nutritional Bowel Food. More Than Just Fibre. Contains Herbs, Pre & Pro-Biotics. 100g. It's not white and odorless, like miralax. It's got a sweet, herbal scent and it's a mustard color. The first ingredient on the list is Psyllium husk powder and I started worrying if it was like the psyllium in Metamucil. I tried Metamucil for Nikko and it was gelatinous and gloppy at the bottom of his glass. It wouldn't go through his straw. How was he going to drink this stuff? At lunchtime I put 1 teaspoon in his grape juice, undiluted, and mixed it up. I could see the powder settle to the bottom and worried again. I don't know if Nikko sensed my anxiety over his juice because he seemed to take the tiniest sips. My heart sank because if Nikko doesn't ingest this stuff, it won't work. He had miralax earlier in the morning so he still had some poop during the day. I told myself that tomorrow (Saturday) I will put 1/4 teaspoon of MoPo, plus a little bit less miralax so that he doesn't suddenly become blocked up if I went cold turkey.

Today's breakfast juice didn't seem to move as quickly either. I moved his juice into a sippy cup with straw so that he could slurp up powder from the bottom, but I think he may have caught on to the taste. Still, as I changed his poopy diapers today I noticed that the consistency of his poo was changing. It wasn't as peanut buttery. It was looking fibrous, but still soft and mushy. It certainly had a strong smell to it as well, but it wasn't an unfamiliar smell. Could the poop have changed even by drinking just a little of the MoPo? I will continue to put 1/4 teaspoon of MoPo in his juice and phase the miralax out slowly. My goal? To have well-formed poops that are solid but not hard.

And maybe I'm psyching myself out about this, but Nikko woke up today and was singing Happy Birthday to himself until I opened his door. He was chatty and friendly throughout the day. There are times when I'm sitting at the table and he'll climb up onto my back, lean over my shoulder and try to engage me with his eyes and giggling. Imagine that, HE is trying to engage ME. Just last night at dinner he saw that Audrey had hot dog slices on her plate, so he came up to me and stood. I asked, "What does Nikko want?" He said loudly, "DOG. HOT DOG." Then ran away when I praised him loudly. Of course I gave him hot dog cut up in chunks and he didn't finish them, but I was so happy about the exchange. Today he saw peaches on Audrey's plate and came up to me saying and signing, "Peaches, please." That's always awesome. What's not awesome is when he asks for Cheese Puffs, Cookies, or worse, Candy. Can't win 'em all, I guess.

Saturday, November 6, 2010

Hunny Bunny

School report: Speech - Greetings. Good with "I did it" after puzzles! Naming pix, body parts.

When Ronin was going to the potty for #1s and #2s and made successful attempts, he would proclaim loudly with his fists in the air, "I DID IT!" Then we'd have to sing his song: Yea for Ronin, Yea for Ronin/he went pee pee/in the potty! Yea! Yea! Yea! Yea! Yeeeaaaaaaa for Ronin! I'm sure that Nikko and Audrey were listening not far away. Both kids were able to sing the song afterwards, and Nikko started saying I DID IT when prompted. I hope he is starting to generalize that phrase if he hears it at home, then hears it at school, then associates it with an accomplishment. I've got to break out the photo cards again, and build some vocabulary with him. I want to do it when Ronin is not around because Ronin is very good with vocabulary and I don't want Nikko to feel overshadowed. It happens a lot when we read books.

Audrey received a package yesterday; it was a little plush baby in a pink bunting with bunny ears from our friends Pat and Gail. The baby is aptly called Hunny Bunny. It's Audrey's, but Ronin became attached to it and was carrying it around for most of the day. Today, Nikko took the baby out of the bunting and started carrying it around. Ronin got upset and wanted it back, but I had to redirect Ronin and tell him that he could play with Hunny Bunny later, since Ronin had him (or her) all day yesterday. I could see that Nikko was very comfortable holding Hunny Bunny in one hand and had a sinking feeling that he wouldn't let it go easily. Ronin was pretty good about letting HB go, even though it took a lot of tears and persuasion. I feel bad that many times, or rather, most of the time, I have to tell Ronin or Audrey that Nikko is not going to give up a certain toy and that they should go and play with something else. Or I'll tell them that Nikko will play with said toy for only a little while, and will soon forget about it. The problem is I am never sure if/when Nikko will give up a toy. When Nikko is holding a toy that the other kids want, I can tell from a little push/pull whether or not Nikko is going to be flexible about giving it up. Usually he is NOT. When I do go ahead and take the toy away from Nikko to give to the others, Nikko gets upset, pissed off, angry, and physical. Even if I drag him away to another room or try any form of redirection, if Nikko wanted that toy badly enough he will find a way to tear himself away from me and get back to that toy. Explaining sharing doesn't work. Explaining consequences doesn't work. That being said, today I witnessed something unusual. Audrey was playing with a little toy car. Nikko came up to her, looked at the car and took it away from her. She started crying and getting visibly upset at Nikko, tears streaming down the face, loud wails. He looked at her in wonderment and then handed the car back to her. The crying stopped and he moved on. This happened twice today. I wonder if he was sorry that he made her cry, or if he was figuring out that if he takes the car away from Audrey then she will cry; give the car back and she will stop. It's too bad that it becomes such a loaded experiment with feelings, tears and taken toys on the line.

By the way, Nikko had intentions of bringing Hunny Bunny to school, but I made him put the doll in his backpack before getting on the bus. We discovered his plastic dog bone in the backpack so I traded him the bone for the doll to hold. After the kids came back from school, I released Hunny Bunny back into the living room and Nikko didn't pay it any attention at all. Ronin was happy to have the baby back.

Friday, November 5, 2010

Sarah's back

School report: Speech - improving with body parts. Sorted new categories. Good job.

This morning Nikko had ABA with Sarah, who had left for school in the fall but came back. According to her notes, he had a rough session the first hour, but eventually came back to the table and they were able to finish on a good note. She told me later that Nikko kept running back to the slide and crawling under it. She thinks he was just getting used to her again since it's been months. I heard some sporadic whining but didn't know he was crying and protesting as well. Sarah said she started out by bringing the drills to him, but later was able to lure him back to the table. Too bad the session wasn't a complete success, but my hope is that having three different people see Nikko consistently will give him some variety. Seeing Kathy twice could lead to boredom for him and burnout for her. I hope three times a week is enough for now. Nikko does a lot of singing and scripting when he's not at school or not in therapy, but it's also not consistent. If he needs help in the living room, such as tonight when Audrey was playing with the toy farm house and was barring Nikko from opening the main barn door, he came to get me and pulled me to the barn. I had to prompt Nikko to say Help. He didn't point to Audrey or tell me her name or for her to stop. He just dropped me off at the edge of the chaos and I was supposed to figure it out before he started whining. I guess I could ask him some key phrases like, What do you need? Help? Who is it? What do you want? You want door open? Open door? Something like that. Nikko is able to make out most of the lyrics to Special Agent Oso. He sings it like Audrey does.

Thursday, November 4, 2010

Getting back to normal

School report: OT - Saying "I did it" lots. Worked a lot on drawing shapes, faces & persons. Finished with cutting practice.

Kathy's session on Tuesday was OK. Nikko sat on the floor at the beginning and didn't try to bolt upstairs, but there were intermittent periods of whining that didn't last long. Overall, his session was ok but he was not as focused as in the past. After lunch I gave the boys their haircuts. I put them in front of the laptop watching some Pixar short tales, but Ronin wanted to watch monster truck clips. Nikko wasn't sitting very still for the buzzer so I had to placate them with lollipops. It was a success, after all.

Today the universe was put back into order because the kids went back to school. Having these school improvement planning days makes for a very long week! The boys were sleeping on the ride back and I worried that Nikko would be in a foul mood before Jenna came. Thankfully he had a whine-free session. I guess Nikko just had a crappy week last week, in school and during ABA. I've been using the miralax every morning, a little more than covering the bottom of the cap. He has been munching on pop tarts, but discovered my stash of strawberry pop tarts today. Luckily, Fiber One makes a strawberry pop tart that is 5% fiber, same as the fudge one, so I'm ok with him eating it. It's also for variety. Nikko remained in a good mood throughout the evening and I was able to leave for my Zumba class without a scene. I think when I tell him that I'll be back and g-bye, he is much better than if I disappear without a word. I've been conversing with Nikko and trying to get more eye contact from him. I still tend to turn his head toward mine when talking at him, and tickling usually elicits the most response. At home, he never seems very interested in fine motor skill activities like drawing or playing extensively with play doh. What I have noticed, however, is that he is more aware of his siblings and will interact if they initiate play with him. He has sat on the floor and played next to Ronin with cars or with building blocks. Today Audrey was laughing while dragging Nikko down the hallway by his sleeve. I told her to let him go, but they both seemed to be giggling about her dragging him around the house. I wonder what the punch line was, but I let them go off and be silly.

Tuesday, November 2, 2010

Halloween - a.m. meltdown, chocolate

On Sunday, Halloween, we didn't have any formal plans. I was still waffling with whether or not to take the kids TOT'ing or to linger at home. We went for a grocery run, however, and took a chance at going to both Costco and Jewel. We survived Costco with Ronin whining for monster trucks he saw in the toy aisle. I tried to avoid those aisles like the plague because things always end badly, but the heavy kid blankets I wanted to get were perched exactly on the corner of a toy aisle. Thankfully, Nikko didn't see one particular item and get attached to it. But when we arrived at Jewel he was at the beginning of whiny mode. We split up to shorten our trip and I had Nikko with me to get grapes and Pop Tarts. He was stimming by running up and down the cereal aisle, punching at boxes that I would have to pick up if they fell on the floor. Denis and I reconvened in the dairy aisle and Nikko picked up a carton of yogurt, refusing to part with it. I knew we could leave it out of the cart at check-out. We got to the self-check-out lanes and Nikko was in full cry mode. We are not sure what sparked it. He had all his toys in his hands and he wasn't really attached to the yogurt. Since he was the only screaming kid in the store I ordered Denis to take him outside so I could finish checking the cart out. He picked Nikko up and Nikko's screams reverberated throughout the store. The other two were quiet in the cart. Once back into the Pilot, Nikko was screaming and thrashing violently. I was so thankful that he wasn't taking shots at Audrey, but I was also trying to figure out why he was having a meltdown. I really couldn't figure it out so we had to listen to his crying all the way home and into the house. EVENTUALLY he calmed down inside while he sat in my lap, and minutes after that he was in the living room watching TV as if nothing happened. It's truly remarkable how so much energy is put into these meltdowns and when he's finished he returns to deafcon 5 while I am still recovering from it.

At 3:00p we took the kids outside to do yardwork and watch out for TOT'ers. Ronin had his hard hat on but I didn't put the others in a costume. I had no desire to take them anywhere and they didn't seem to mind at all. However, when the neighbor's girl Brianna came with a large group of kids, with Rachel watching them from the sidewalk, Ronin ran to me full of anxiety and said he wanted his bag. He wanted to go TOT'ing with them. Of course I didn't want him to be upset so I let Denis lead him away. Ultimately, Rachel took Ronin along for TOT'ing around the block. He was SO happy to tag along. When he came back to show me all the candy he got, I praised him and said, "And now I'll trade you that candy for a LOLLIPOP! ISN'T THAT COOL??" Ronin replied, "YEAH!!" so he took a DumDum and I confiscated his "itchy" candy and put it in the house. I wasn't as lucky with Nikko and Audrey, who seemed to thrive on eating chocolate. I definitely had to cut them off and neither of them stopped willingly. Nikko had no desire to put on a costume or go from house to house. Maybe next year will be better because Ronin and Audrey will probably want to go TOT'ing and Nikko will come along no matter what.

I didn't expect much from dinnertime since the kids had so many lollipops and candy. I think the candy affected Nikko because he wouldn't sit down at all. He lounged across the two fold-up chairs in the kitchen and hardly ate his pasta. He doesn't get chocolate often at all, so I wonder if it made him act differently.

Today he was in a good mood except for when Jenna arrived for ABA. Nikko let out a panicked whine and didn't want to stay downstairs at the beginning of the session. He was glued to the base of the stairwell. I finally left to let Jenna figure out how to get him back to work at the table. He did, eventually, and completed all his tasks even when he was crying through them. I really hope Kathy doesn't have this kind of problem tomorrow.

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.