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.

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. :)

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.

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.

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.

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.

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.

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.

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.

APT

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.

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.

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.

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.

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.