Potato / Ronin's meltdown

1/28/11 School report - Speech: Better work today. Good naming household items. Said "I don't know" twice when I cued. Then twice on his own! He also said "Hi Winters" when I said "hi".

At lunchtime, I decided to heat up some potatoes in the microwave, split them open, slather with [fake] butter and serve up as a baked potato. Nikko love it, had about three halves. The boys went off to school. When they came home, I saw that they went to a presentation given by a dental hygienist because they both had bags with a toothbrush, toothpaste and an overview. In fact, the overview said that the dentist had a child with ASD that currently goes to Prospect High School. Nikko was content to carry around his toothbrush and say, "Brush your teeth" again and again. Ronin was happy with his wares, and since Audrey didn't go to school I gave her a toothbrush from the cabinet and snagged Nikko's toothpaste to give to her. I think Audrey went to bed with the toothbrush and paste, too. When it came time to go to the in-law's house for dinner, I saw that Nikko was standing on a stool by the kitchen counter, looking for nothing in particular. He was poking at the bag of potatoes so I took a small one out and gave it to him. I don't know why but he quickly adopted the potato and ran happily away. That potato came with us to the in-law's house, by the way. And it went to bed with Nikko, too. I wonder if it will hold the same power tomorrow as well.

Just wanted to note one more thing, that yesterday before the boys left for school, Ronin had the mother of all meltdowns, the worst I've ever seen with him. He wanted to put on his boots before Nikko, but Nikko had come to me first and I wanted to get Nikko ready so that he could stand by the door all set to go. Ronin didn't want to be second. HE WANTED TO BE FIRST. And that's when things got ugly. Ronin demanded Nikko to come back and take off his boots so that Ronin could be first. I kept trying to put socks and boots and coat on Ronin, and he struggled in protest. I've allotted only five minutes for the "coating" process and Ronin was making this all drag. I got really irritated and angry, saying that Ms. Veronica was coming and wasn't going to wait for us, that if we were late then I'd have to drive him to school.

Uh-oh.

Ronin suddenly changed his tune and wanted me to drive him to school. I was pissed because I wanted them on the bus. I got the boys outside with Ronin screaming and crying for the whole block to hear him. When the bus pulled up, Nikko got on but Ronin dragged away. I told Ms. Veronica that I'd be driving Ronin, despite her coaxing Ronin to join the bus. When the bus pulled away I grabbed Ronin's sleeve and dragged him back into the house with grim determination. I had to get Audrey booted and coated, then make sure I had my purse and grocery list ready to go. But Ronin was wailing that he wanted the bus to COME BACK. I was screaming at him by now, saying that the bus was GONE and wasn't coming back so I'd have to drive him. He wouldn't sit quietly or patiently at all. That was driving me batty. I say this all low-key, but at the time I was pretty hoarse, angry, pissed off, you name it. I put Ronin and Audrey into the Pilot and drove to school. When the teacher came to unbuckle Ronin from his seat, I thought he was going to launch into another tirade but just then another student walking by said, "Hi, Ronin!" It was a classmate, and he and Ronin walked hand in hand toward the school. Yeah, cute. I was relieved for that, but having such a horrible time and feeling awful because I was still sick that I was crying all the way to Costco. I think being in the house for two weeks with sick kids, and sick me, has taken its toll.

Musings

1/27/11 School Report - Speech: Tried to work on what ?'s - not too interested. Got a fake cry. Worked on greetings, I see____, & "my turn" taking turns on trampoline w/me.

I also wanted to include an email correspondence I had with Nikko's OT regarding his "singing through verbal instruction" incident yesterday:

Me: Hi J,
Your note: The harder the skill is - the more it seems Nikko sings through my verbal instructions - sounds very on par with Nikko's current attitude to date. Into the new year, he has become more challenging to his ABA therapists such that we are currently in realignment with their team leader so that all the therapists are on the same page in terms of methodologies used to work with Nikko. He has been difficult to come sit at the table and work. He has been really "unfocused" when trying to get his attention, yet is able to complete the required tasks. He is challenging authority, including mine. I observe him when he is watching something on TV that he doesn't particularly like or doesn't suit his tastes at that moment, and he usually starts droning and/or covering his ears to block out the audio (but not the visual). I just found it rather interesting that he is doing this at school, too.

The "unfocus" is the crux of many problems, and also the hardest thing I am dealing with as of late. I don't really have a point to this email except to tell you that I'm not surprised he's doing that at school, but also that it transcends into the home as well. Any thoughts?

The Reply: Yes - I do think he can be "challenging authority" based on activity preferences. My past experiences with children with autism is that the winter months can be especially difficult. With Nikko - the winter break and then the illness probably just compounds this. Its hard at times to determine if he truly is struggling or is "choosing" not to try. Hang in there - we just keep on trying. Know that we appreciate your struggles and are glad you know your child so well.

This is an interesting point about the winter break and the illness. I agree with both, but I am really quite perplexed on the timeline of when things happened. October and November were not great months for Nikko at school, plagued with constipation problems (they're not over, they're just currently being managed under the radar) and Sarah came aboard again. Nikko started improving speech-wise by early December, then at the end of the month Rebecca came along. Nikko had been steadily challenging both Sarah and Kathy during their sessions in the fall and winter. But he has not been great with Rebecca at all. Winter break came and went, and when he returned back to school Nikko seemed to be doing well. We are four weeks back into school and now the issues of being unfocused are coming back.

I'm feeling really pushed by Nikko at times, especially when it comes to wanting something he doesn't necessarily need at the moment. He was demanding "cheese sandwich" a half hour before our regular lunch time, and I went ahead and fed him even though I wanted to wait longer. He saw a random bag on the kitchen counter that had Santa PEZ dispensers in it. He wanted it. Ultimately, I gave it to him including the PEZ candy. Within minutes, Nikko was howling and cackling. I like to think it was due to his latest coup in getting the PEZ dispenser, not because he inhaled all the PEZ candy. Harumph.

Unfocus

1/26/11 - School Report - OT: Sensory motor prep activities - trampoline, big ball activities, animal walks. At table - worked on name & cutting. The harder the skill is - the more it seems Nikko sings thru my verbal instructions.

When Nikko doesn't like something on TV, he covers his ears and starts droning in a monotone to block out the audio. But he doesn't necessarily look away from the TV, either. I wonder why.

Nikko had speech today. Lisa said it was a really good session, he was happy and focused and working. She was doing sentence approximations and he was able to complete sentences with her. At one point she said something like, "We are going to see_____" and he replied, "Mom." That surprised me because he never says Mom. I'm Boppy, along with the phrase, "Good Night, Boppy." She thinks she could expand on these approximations, especially since he did two of them in context. Ok, then!

Nikko seemed to have a good day at school, and then he had ABA with Rebecca after school. I didn't hear any arguing, but I did hear Rebecca using very outgoing language. I think he tired her out a bit, actually. But her report of the session was that while he was compliant and completed whatever tasks they could get to, he was extremely unfocused. This unfocus seems to be the crux of our problems. I don't have any suggestions on how to keep him focused except to be engaging and in-your-face, touch his shoulder to get his attention and have exciting stimuli. I guess I'll have to have a discussion with Jenna about this.

Ice Age

1/25/11 School Report: Speech - "I want puzzles please" to association puzzles he saw. Worked on greetings, I see_______.

Today I tried another variant of FIRST/THEN with Nikko. He wanted to watch the movie Ice Age 3, which we don't own but is currently playing on the DVR On Demand via Comcast. But he called it "Dinosaurs." I put it in and it was close to dinnertime. When I was ready for everyone (willing) to eat, I turned off the TV and told Nikko, "First EAT, then Ice Age." I repeated this until Audrey started chanting it. Nikko understood and ran to the kitchen to take one bite of his cheesy mac, then ran back to the living room expectantly. Needless to say, it was a lot of repeating First Eat, then Ice Age. He initially said, "then COOKIE," but I corrected him, saying "First EAT, then Ice Age." I also signed EAT just to reinforce the visual. He made it through most of his food, but Ice Age prevailed in the end.

Ronin, however, was too tired to eat at first. Eventually he ate some bread and [fake] butter while I gave Audrey a bath. He's currently sporting another temperature, consistently at 100.? all day. I really hope it will disappear so he can go to school tomorrow, but the outcome is looking somewhat bleak. I would really love for him to go to school because at home, in this sickly state, he is ultra-crabby and picking fights with Audrey every minute. I have had many parent tantrums today, too much screaming on my part that I regret. And I am battling my own cold now. In fact, I need to get off this computer and get some sleep!

The wry smile

1/21/11 School report: Speech - Nikko seemed happy to be back! We worked on naming pix. If he doesn't know one and I shake my head no he will say "I don't know." So cute! We are working on the hosuehold item pictures now. Tried fishing games, greetings, directions.

I sent Nikko to school on Friday. His fever was gone and he was no longer lethargic. He seemed happy to go back to school as well. I pretty much cancelled all his therapies during the week because I couldn't predict his mood. Friday morning was very perplexing because he woke up and curled himself on the floor in front of the shoe cubbies. He wanted his juice but wouldn't take any steps toward the kid table, no matter how enticing I made it for him. He wanted me to bring his juice to him, but I refused. Perhaps I did that when he was sick in the living room, but if I brought him his juice at other places in the house then I think it would start a precedence of trouble. This has become a familiar pattern as of late, Nikko pushing my boundaries and trying to see how far I will go. It sucks.

We didn't have anywhere to go today. However, Ronin woke up with a fever to match the fever Audrey had yesterday. So now I have two little ones with fevers that fluctuate. Audrey's nose is drippy and she is driving me insane because she wants me to wipe it all the time. She refuses to do it herself. I've tried to get her to wipe her own nose but that will of hers is just as strong as Ronin's. As for my poor Ronin, his fever caused him to be lethargic yet agreeable today. It was much easier to parent the sick kid that could communicate his pain versus the one who could not. :( Ronin ended up sleeping in the afternoon and throwing up juice in the evening. I started him on pedialyte on ice because his appetite has disappeared.

Nikko seems oblivious to his sibling's pains. He jumped on Ronin in the evening, smooshing Ronin against a pillow. It wasn't malicious, although Ronin was screaming for Nikko to get off him. I came by and tried to move Nikko. He wouldn't budge. I tried to pry his arms off the pillow and Nikko stood fast. I looked at Nikko and he looked directly at me with a wry little smile on his face. Through Ronin's screams I understood immediately that Nikko knew EXACTLY what I wanted him to do, but was purposefully doing the opposite. For whatever reason, I don't know. But it showed me that Nikko was completely cognizant that his actions were irritating Ronin.

One more thought before I go. Today I received emailed pictures of Nikko at school. I am so appreciative to receive these pictures because I can see what Nikko does at school. It warms my heart to see him amongst his peers. But today I noticed something in the pictures that has really been around but hard not to see. Nikko looks spacey. He had three pictures playing at the sensory table. It was filled with snow and ice, and for each picture he didn't look directly into the camera. In fact, in one picture he was standing next to a boy (Charlie, maybe?) who stood and grinned really wide at the camera. Nikko was leaning on the edge of the table, looking off to the side. I reviewed all the other pictures and yes, he does this in many instances where he is playing alone, but I noticed more engagement in the pictures prior to this last set. I really hope it's a fluke. Another thing I've been noticing again as of late is the staring-up-at-the-ceiling thing he does when he is off in his own little world. He'll be sitting on Denis' lap at storytime and we'll ask him what song we should sing. Instantly his eyes will go up toward the bookcase against the wall and his eyes will stay on that bookcase. He may or may not be listening to us. Many times we will put a hand on his chin and turn his head toward us while his eyeballs stay glued on to the bookcase. It takes my hand over his eyes to make them shift back to us. Is there a term for this lack of engagement? It pains me to see that this still happens in Nikko.

Finally better

Nikko's fever broke some time overnight but he was warm all day. The lethargy was almost gone because he sat (and leaned) and played with the train set. His appetite was so-so until the afternoon when he went gaga over peaches. But by the day's end he was probably overtired from not napping all day. For the past two days he was in and out of sleep and today he didn't nap at all. I took an hour to go to the school and observe the Kindergarten / Extended Support Program. Atz came over to watch Nikko and Audrey. She told me that he didn't whine or put up a fight when I left. It was good to observe how the classrooms were structured. Upon visiting the ESP room, I felt at east that it was a place where Nikko could get work done. I can envision his ABA drills being done there. What totally freaks me out is the idea of him being at school the entire day, even through lunchtime. He's not the best eater. I've got to start him on grilled cheese sammies or something friendly for school! He's not eating chicken nuggets like he used to. I wonder if cold pizza will hold up in a lunch box? In case he relapses tomorrow morning, I cancelled his speech at APL. While I want him to keep moving forward in speech and everything else, I also want him functioning at 100%. I think his sickness this week made him crabby and weaker so we've got to hit the reset button over the weekend.

Still sick, and an epiphany

Day 2 of Nikko's fever. He was lethargic all day except for a two-hour window around lunchtime. He perked up a little bit and ate a biscuit with (fake) butter on it and some grapes. I had called the gastro in the morning and they told me to keep adding miralax to his pedialyte. I worried that yesterday he didn't have any at all and that would back him up. But this afternoon he had a big bowel movement that was equivalent to a liquidy backup. I hope it continues, quite honestly. Then he went back to Mr. Lethargic in the afternoon/evening. I brought him a biscuit and grapes to the floor during dinner and to my surprise he ate it. He asked for more grapes. No throwing up so far. And when he asked for "A-chocalata-pop-a-TART?" I could see that he was on the mend. His fever broke and now he was at a low temperature. I cancelled his early morning ABA in the hopes that he'll get some rest before going to school tomorrow.

On another note, I had an epiphany earlier this evening.

It was almost bath time for Audrey. The living room looked chaotic. We try to clean up everything before bath time starts so that I don’t have to pick up after everyone goes to bed. Most of the toys have assigned bins which the kids have recognized. The challenge was getting the kids to continue the clean up process.

I announced that it was time to clean up and started singing the school-based clean-up song. Audrey didn’t budge from her pile of stuffed animals. Ronin started picking up a Mater tow truck to put it away, then settled down in front of the car bin to play with it longer.

“Clean up, guys!” I started bellowing, making a big production by picking up random toys and tossing them into their bins. I noticed that each kid was idling with a toy that was headed to a bin. I turned off the TV and kept bellowing at them to pick up toys. [Nikko was lying on the floor, sick and lethargic, so he was exempt].

I was shoving a random toy into a colored bin when I knelt down in front of a bookcase and yelled, “Why? Why is this SO hard? Why can’t you guys just clean up when it’s time? I don’t want to be yelling at you guys to clean up for the rest of my life! Jesus, WHY can’t they do this?”

Suddenly I felt like a bolt of lightning struck my brain because the next thought was, “Because they need help. They don’t know what to do. There are bins, but they don’t know where to start or what to put away first. I think I need to list them down. That’s right. I’ll make a list of each toy category and then they can see what needs to be put away next.”

The wheels in my head were spinning as I got a tablet of paper and a marker. I drew a checkbox and next to it I wrote: CARS/NEW CARS. Below that was another checkbox and next to it was the word TRAINS. Next checkbox and TEA PARTY BIN/FOOD/DISHES. Then was STUFFED ANIMALS, POPPOLO, PILLOW PETS. After that was AUDREY’S PURSES. Then was FIGURINES. The last checkbox said EXTRAS/COUCH. I basically scanned the living room to see what bins needed to be filled and put away, then listed them. I showed the kids which item was next and helped them pinpoint the toys in the room.

It totally worked. They found toys, they put it in the bins, they put the bins away. The floor was clear in an instant and I gave high fives and praise. I resolved to put the checklist on paper, laminate it and then tape it to the wall. We can even put a check with a dry erase marker to indicate what was accomplished. I was shocked that the clean-up list was so simple and effective.

Nikko is sick.

Nikko was sick all day today. He was lethargic and lay on the floor going in and out of consciousness (sleeping). He didn't eat. He drank some juice at first, but he would throw it up within minutes afterward. As the day progressed, he was throwing up frothy spit, then I saw the yellow traces of bile. Finally, this afternoon, I was able to get some flavorless pedialyte and I put it in a sippy with ice. Somehow he took sips of that and was able to hold it down in his tummy. But later in the day he walked to the kitchen, took a few sips of regular juice, and then promptly started throwing that up again. I stuck to the pedialyte. He went to bed but woke up around 11:30p. It was a good opportunity to try and hydrate him again so I took him into the living room and let him lay beside me while I folded laundry. He curled up in the same spot, the crook of the couch on top of some pillows. I walked him back to bed and I think he's resting again but I'll check on him before I go to sleep. He didn't go to school today and I don't think I can let him go again tomorrow since he's not fever-free as of tonight. My biggest worry in the back of my mind is that he will become constipated again, and all those enema efforts will go out the window. We'll see how tomorrow plays out.

Pinata, and finally adminstering "it"

I'm behind on posts.

1/14 - Nikko had a good session on Friday with Karen. No fighting or resistance. She even maintained using the therapeutic listening CDs with him, and apparently he's putting on headphones with no problem. One thing I got out of our post-session wrap up is that Karen suggested minimizing the number of hours of TV he watches in a week. This is to reduce the ambient noise around him. Apparently, Nikko doesn't multi-task well and may have trouble filtering out which sounds are the most important ones he should be listening to. This in turn might speed up his response time pertaining to processing words.

School report: Speech - yesterday - good categorization and labeling common food, animals, clothes. Greetings, yes/no. Today - I see _____, yes/no, singing songs.

On Saturday we took the kids to our group's after holidays Holiday Party. It was at a big house in Streamwood. We have been there before, despite Ronin & Audrey's initial resistance to leaving my side upon arrival. Nikko, however, took off his shoes and socks and took off running. He didn't seem to mind all the roughhousing boys around him or the noises from laughing adults in the kitchen. He loved going up and down the carpeted staircase, running down a hallway and descending the staircase leading to the back of the kitchen. At one point I even saw him running in the horde, giving little shoves to the backs of some of the boys, then smiling and running away in a mock game of chase. It was only during the pinata moment that I held Nikko back. They were using a real wooden baseball bat and I didn't want Nikko to step in unexpectedly. We got home a little after midnight from all the cavorting around. This made me think the kids would be ultra-tired the next day. Not a chance. Today, everyone was running full steam ahead. Nikko fell asleep for an hour in the early evening, unfortunately. This affected his sleep patterns and so he lay awake from 9p-12p, talking, giggling and singing to himself in his room. At least he didn't try to bolt. But he was in the dark except for a small night light. One little nap can wreak havoc just hours later.

I can't believe I forgot to mention that on Saturday morning and Sunday late afternoon, we administered the enemas on Nikko. We put a towel down in Ronin's room, gave Nikko lollipops, and lay him on his side to administer the formula. Nikko was terrible upset, uncomfortable, angry and crying. We waited for a minute or two, then walked him to the bathroom to sit on the toilet until he expelled whatever was in his bowels. We did it, he survived, so did I. :)

Noncompliance again

1/13/11 School notes - Bathroom: Nikko pooped. It was more like diarrhea. Grayish/brown. He also made regular brown poop on the toilet. Very gassy.
And on the back of that report: Nikko was on the toilet and I went in to ask if he went poopoo - He said "I did! A bunch and bunch of poopoo!" He said it 2 times! Yay! :)

Did I read that correctly? I reread that paragraph and am shocked and stunned. First, he pooped on the toilet at school. He has rarely ever pooped on the toilet at home. That is amazing. Second, he said something that was totally in context with the situation. Where did he get the words bunch and bunch? I'm really, REALLY happy that he said something, twice, but imagining normal-sounding phrases to come out of his mouth is just so surreal. I would like to get this caught off-guard in a good way, more often.

I wish I could say his 8:30a ABA session went as smoothly. Sarah came to play with him and I think he didn't want to sit at the table with her. She said that she blocked him from escaping the table by sitting next to him, and barring him from crawling underneath the table, so he gave up trying to get away from her and sat and cried and screamed for 15 minutes. It was a LONG 15 minutes. I think five minutes into his tantrum I sat up hear and realized it was still going on. However, unlike on Wednesday, I didn't make a move to go down and save him. His cries sounded angry and mad, but I figured that he should stick it out with her, that there was still plenty of time to get work done. Good thing I didn't go downstairs because he did stop crying after 15 minutes and then continued to work at the table the rest of the session. He challenged Sarah and she didn't give in. Fine.

I think Nikko is challenging everyone in authority around here. Not only has he been noncompliant with Kathy, Sarah and Rebecca, but today when he got home from school he tried to pull that stuff on ME. It's winter and there is a lot of gear the kids wear to leave the house for school. When they come home, the floor is littered with their socks, shoes, backpacks, jackets and hats. It's more stuff to put away than usual, but I still demand that the kids adhere to our routine of putting their shoes back in the cubby, their hats in the cubby bins, and to hang up their backpacks and jackets. They do it at school, they can do it at home! I know they are probably cranky, tired and hungry from getting off the bus, but I still want them to put their gear away before having their snack. Today, Nikko sat at the kitchen table and wanted cheese puffs. I said, "First put away backpack, shoes, jacket and hat. THEN cheese puffs." Well, Nikko didn't want any part of that. He sat and whined & cried. I repeated my request and he flatly refused to budge. I tried to drag him, made him pick up his jacket which he angrily released to the floor, so I walked away from him. He was still pretty mad, but I kept repeating my request. He stood up at one point so I quickly ushered him toward the cubby area and shoved his backpack into his hands. He was protesting, but eventually caved in and [angrily] hung up his stuff. THEN I put a bowl of cheese puffs in front of him. As promised.

One more instance this evening when I thought I was going to lose another battle was clean-up time before taking a bath. Denis was home by this time so it was better to have his support in encouraging the kids to pick up toys. The three were sitting around the Hungry Hungry Hippo game, fighting of course. I decided that they could not play with it during clean up, so I quickly disassembled it and put it in the box. Nikko was pretty mad because he wanted to play with it. "FIRST clean up, THEN Hungry Hungry Hippos," I announced to him while putting it up on a shelf slightly taller than him. Nikko was whining/screaming for it, but I started putting toy cars in his hands, then figurines, and any toy that needed to be put away. Nikko's demeanor soon changed to laughing/whining as he kept dancing in front of the shelf, expecting to get the toy but being interrupted by me making him put away other toys. It took a good few minutes to get the living room cleared, and as promised, I took the game back out and put it on the floor. This First/Then concept is really of the utmost importance for him right now. Nikko is impulsive, but is learning that he needs to accomplish what is first before being allowed to do/have what is next [then]. I am wondering if I should put another schedule in place here in the kitchen for putting away outerwear. Maybe there are too many steps to remember without being prompted.

Gains and the missing schedule setback

1/12/11 - School report - OT: Tried swing - but didn't like it - Finally got him to say "No swing" when I wouldn't let him off. Worked on coloring, drawing faces/name printing & took cutting samples.
Bathroom: Nikko's pull-up was wet but he also went potty in the toilet. We are ok with pull-ups for now.

We went to speech today. Nikko willingly took Lisa's hand and turned to say good bye mom when she prompted him. After his session, Lisa said he had a really good one. They went to the motor room, just the two of them, and they played with bean bags pushing them down the slide. She said he vocalized a lot and it was appropriate for the situation, saying Crash when the bean bags hit the bottom. Lisa remarked that in the room, when she was doing an exercise with him, it might have mirrored something he does during ABA because he hesitated and gave her a sidelong glance as if to say, "Hey, she's making me WORK now!" Lisa thinks Nikko perceives coming to Arlington Pediatric Therapy as fun, and I would have to agree that Nikko seems to enjoy going to his speech sessions, no arguments or resistance whatsoever. And there's the promise of a lollipop at the end, too, go figure.

Nikko came back from school in a good mood, asking for cheese puffs once he got into the kitchen. He was going to work with Rebecca and I don't think he's warmed up to her just yet. I was hopeful, because after she arrived and everyone went downstairs, it was pretty quiet for an hour. I could hear Rebecca encouraging Nikko loudly. But after an hour, they both came upstairs. Rebecca told me that she could not find the yellow picture schedule anywhere in the bin, and Nikko wouldn't do any work because he follows that schedule closely. That really surprised me, one because I had just trimmed a ragged edge from that schedule two days ago, and two because Kathy just worked with him yesterday and didn't mention a missing schedule. We went downstairs and hunted for it for 5-10 minutes. I finally found that it had fallen between a low table and the projection screen. The problem was that Nikko thought he was done working for the day, and refused to let me go upstairs and leave without him crying. Still, I left with the hope that the session would resume. It didn't. He was protesting and screaming, and I could hear Rebecca say, "NO, Nikko." So I went downstairs to end the session, knowing she probably wouldn't get any more work done out of Nikko. Sadly, it was probably a wasted session overall. She and I both think he's still getting used to her and is trying figure out if she will be a pushover or will be a force to be reckoned with.

I've also decided to delay the enemas until the weekend. It doesn't make sense to me to administer then so soon after dinner and too close to bath/bed time. Maybe if dinner were at 5pm, but I need Denis' help to do this and he doesn't get home until after 7p, sometimes 7:30p. I will just do it on Saturday and Sunday morning, so I have the rest of the morning and afternoon to monitor his bowel movements. He's been through too much trauma the past few days, and I am also short on patience right now.

Gastro orders

Dr. Nelson's nurse called me today with the doc's instructions and results:
Celiac testing came out normal.
X-ray results showed gas in the colon (probably normal) and a large amount of stool in the left side of the rectum toward the end. Therefore, she recommends the following:
-Use a pediatric Fleet enema 2 evenings in a row.
-Continue the 1/2 capful 2x/day of Miralax.
-Give him one teaspoon of Fletcher's at bedtime. (Fletcher's Castoria is made of natural Senna, an herb, a derivative of the senokot [root], a laxative.
-Try sitting after meals on the toilet, 5-10 minutes, within 1/2 hour after eating.

The reason why we're continuing another month of cleansing is because the colon and rectum are so stretched out right now that it needs to be cleaned out, and propel things through, so that the colon and rectum will return to its normal state. This could take a while. I found Fletcher's at CVS Pharmacy, but they didn't have the pediatric version of the Fleet enema. The pharmacist said she ordered some and will be in tomorrow after 11a. Guess I'll be making another trip out in the afternoon for that. And then I'll have to get Denis to help me hold Nikko down while administering the enema. Greeeaaaaat.

Today I visited the Northwest Suburban Special Education Organization (NSSEO) to return a VHS tape and get the PECS DVD to watch. While there, I had the opportunity to look at the other books and videos available for checking out. I picked up a behavioral intervention book that I've been looking/waiting for on amazon for months, a challenging behavior book, and a toilet training book. Great resources, but now I have to find some time to read all this!

And get this, his school report today:
Speech - Better attention today. Naming pictures, greeting, started association puzzles - 2 piece puzzles, he did pretty well: cake/candles, paintbrush/paint, train/train track. He was rubbing his eyes and I said, "Are you tired?" He said, "I want sleepy time." and laid down! It was a brief rest and then we did "I see ____"

I can hardly believe that happened. He usually requests food and only food. But sleepy time is totally out of context for where he was at, so that really says something about his developing self-awareness. That is truly awesome. Now, if I can figure out a way to get some fish oil into that kid, to do some brain boosting, I'll be set. :)

X-ray

Today I took Nikko to his gastro appointment. It was about a month ago that we last saw Dr. Nelson. I didn't expect much, and honestly, not much happened. Nikko ate lots and lots of lollipops today. When we got to see the Dr., she asked how his poops have been and I told her how we never hit that level of solid formed poops, 1-2x day. She said that she would like for Nikko to have an x-ray so she can check for blockages or anything else, and THEN we will move on from there. Or as she had put it, and I don't quite remember her exact words but were to the effect of: "...and we'll see about what medications to use, and go from there." A little alarm went off in my head because I have heard from other ASD moms dealing with the gastro problems in their kids that many gastros push meds, which serve as a band aid, instead of helping to solve the problem. I don't really want Nikko to be on gastro meds right now. Sure, I want to find out what is causing him to constipate so quickly, and why can't his erratic diet support all that healthy eating that's supposed to contribute to healthy bowel movements? I think I have to compile a solid list of questions and have it handy for the gastro when she calls back in the next day or two. Oh yeah, so after our appointment, since my parents were watching the younger two, I decided to take Nikko straight to North Shore Hospital in Glenview for an x-ray. The process from registration to waiting to getting the x-ray took an hour. When we got to the exam table, I told the thin (Filipino?) rad tech that Nikko had autism and wasn't verbal, and he'd put up a fight so I'd have to restrain him, and would probably need help. When Nikko first laid on the table with lollipop in hand, he looked up at the square lights and perhaps thought it was a TV. For three seconds I thought we would be ok. Then Nikko started squirming, then squealing, then crying and yelling and wriggling. I held his arms and torso still while the tech held his legs and hips, which was probably harder to do. Somehow, they got a picture, even with Nikko bolting up at least once and losing his shoe. When we were all done, Nikko was pretty pissed off and breathless. I thanked the tech and escorted Nikko out. What was kind of priceless was the look on another boy and his mom who were waiting a few feet away, the boy wearing a smock and who was originally excited about his x-ray. I think we rattled them slightly, but I couldn't stick around to see. I whisked Nikko down corridors into the lobby and let him cool off while getting his coat on. Poor guy had the blood drawn Saturday, then restrained so we could look at his bleeding toe, and then today with the x-ray. I think I'm done with hospitals for a bit.

Nikko and I went on a quick grocery trip before heading home. The rest of the night was calm, thank goodness. Tomorrow he has speech with Kathy, and then while the boys are in school I plan to visit the NSSEO to check out a PECS DVD.

Triple blood draw

Around 10a we took all three kids to Northwest Community Hospital to get their blood drawn. Ronin and Audrey were due for blood testing regarding their multiple food allergies and Nikko was getting ruled out for celiac disease per his gastro. We've been putting it off since over the holiday but decided there was no better time to do this, especially if Denis' case went forward in full motion this month. I loaded up on the lollipops, DVD player, books, toys and snacks. The kids didn't know what we were going to the hospital for. Nikko followed me to one of the registration booths and sat asking me for lollipops while a receptionist helped fill out all our paperwork. Nikko ate five of them before we were finished, and in between lollipops he asked like a parrot and would start whining when I told him no.

The lab was on the second floor, a very familiar place to us since we've been there multiple times when the kids were babies. Two phlebotomists were on hand to handle us. Nikko was called first but had to wait longer because his paperwork wasn't ready at that time. I led Ronin into the room, put him in my lap and instantly he was whining. I wrapped my leg around his, put my left arm around his body to grip his right arm, and then tilted his face toward mine with my right hand so he wouldn't see what the phlebotomists were doing to his left arm. Once the butterfly needle went in, Ronin started crying. He tried to move but I kept talking to him about eating Old MacDonald french fries when we were done. I also promised him a lollipop which I gave him immediately when we were finished. I walked him back to the lobby where Denis and Audrey sat, and then took Nikko's hand. He started whining, too. We did the same procedure, except Nikko had started crying loudly from the moment I picked him up. He was tense and tried to move his body but I immobilized it well. I also turned his teary face toward mine and started singing Twinkle Twinkle Little Star. He was pissed, but didn't lash out, thank God. When we finished, he tore off the taped gauze on his arm and fled the room, standing in the hallway to loudly protest. I walked him back (of course he trailed me the whole time) and called for Audrey. Happily and unknowingly, she said, "My turn!" She sat on my lap and was slightly curious when I turned her head away from her left arm. She felt the prick, struggled slightly and announced, "It huuuurrrts!" But there were no tears, I told her she was such a brave little girl, and she got stickers before getting a lollipop. The girl was no problem. :)

We went to do a Meijer grocery run, and finally got some chicken nuggets and fries on the way home. It was the kids' reward for getting their blood drawn. I was surprised that the hospital was not crazy-busy on a Saturday morning. It was almost deserted. That meant we didn't have to wait long at all, and that was fine by me. I think Nikko certainly didn't like what happened to him, but I don't think it was traumatizing since I was there and holding him the whole time. I don't want to do this again for a long time.

This evening, after dinner, I saw blood on the couch where Nikko sits. I ran to him and saw that the black part of his toe was gone, replaced by smeared blood. I thought his toenail came off but upon closer inspection I saw that the blackness under his toenail was probably a huge blood blister that had popped when he jumped on the couch. His toe actually looks closer to normal, much better, except for the tattered skin around the nail bed. It's a relief because his toe was looking like it needed to be amputated at the tip. Nikko refuses to wear any type of bandage, of course. It's maddening that we can't cover his wound without him trying to rip off the band aid.

I haven't been feeling great the past two days. My head is all cloudy, my sleep is messed up, and I've been missing my alarm so I missed my morning workout. I hope another day of rest will put my body back on track and clear my sinuses and cough. I need to work out again!

Karen's feedback

After his session today, Karen asked me if Nikko had any reactions (positive or negative) to the therapeutic listening she did with him last week. I told her I didn't notice anything different. He wasn't more scripty and wasn't in a bad mood at all. He was destined to go to school anyway. Same thing today, he wasn't more or less scripty. Other than the toe-door-slamming incident, he's been in a pretty good mood all week. I have noticed, as I mentioned yesterday, that he's very unfocused as of late. I'm still wondering if the orange cheese puffs are to blame, or was it the cheesy mac I made (loaded with garlic because I ran out of onions)? I may never know, but I won't give him any more orange cheese puffs just to be sure. Karen talked about their session, how it went well until near the end when they were doing a memory card drill. He was naming a card and then depositing it into a box, signifying that the action is complete. I don't know exactly what they were doing, but suddenly he wouldn't put the card in the box because the lid was on, and I heard him screaming up a storm. She didn't seem worried, however. He got over it once the session was over and he promptly asked for a lollipop when he saw me. Karen talked about how Nikko takes a few seconds, even as many as 30 seconds, to respond to identifying a word. That response time needs to be improved so that he can properly utilize the words he has learned/is learning in everyday interactions. But there is something in his head that is not making the connection fast enough. The unspoken word is, I assume, autism.

We came back home, had lunch and then the boys went to school. I ran errands with Audrey. We went to drop off some mail, some gifts for the Creens, and then to Costco. The boys came home and had snack, and then revisited watching some Veggie Tales episodes. It was an easy night, and Nikko was still in good spirits. His toe is probably not hurting as much as it did, but it looks nasty and black. Hopefully it's just the bruise.

Tomorrow morning we are seriously going to attempt to bring the kids for the blood draw. I don't know how it will go, but I do know we'll have to bring some strong reinforcers like lollipops and maybe even M&Ms for Nikko. I'm not looking forward to it, but it has to get done!

Orange cheese puffs?

1/7/11 School Report - Speech: Off today. Not too interested in activities. Did enjoy greetings. Tried where ?'s and fishing game.

This is disappointing to hear, in light of the fact that Nikko had a good ABA session with Sarah just that morning. When Sarah arrived, I told her how Rebecca's session didn't go well despite having a good day at school. Today everything was flip-flopped! Sarah said Nikko did good work, and when he got distracted by the slide and the bball hoop she piled everything up (like what Rebecca did) so he couldn't climb on stuff. I didn't hear any shrieking or complaining today, either. I wonder why he was turned off in school. I hope he's accomplishing things as of late, but we've only been back to school for four days now. Ah, the worry.

Nikko's foot still hurts, but his limp is improving. It doesn't look great, however. The tip of the toe and under/surrounding the nail bed are black, bruised. I wonder when that nail will come off.

On another note, Nikko's really been pushing me regarding wanting things, especially food that he can't always have, like cheese puffs. I am wondering, don't think I'm too nuts here, if there is a difference in the orange cheese puffs vs. the yellow organic cheese puffs I get for him? He's been defiant toward me during the times he's eating the orange ones, but I don't get this resistance when he's eating the yellow ones. I wonder if the food thing has any merit. The last time I doubted a food was when it was organic vs. regular mac cheese. He's eating fish sticks but nothing else unusual (chocolate pop tarts, no biggie). Maybe I should just phase those orange ones out... I only got them because Audrey made such a stink about them in the store. Figures.

Unfocused

Day three of toe, technically. Looks bad, dark under and around nail bed. Not more swollen. He puts more pressure on it today, and is not walking around like Quasimoto as much. Still favors it, though.

School Report: Speech - Greetings, 1-step directions.
OT: Did alerting activities not on feet i.e. big ball bouncing, upper body strengthening. Then did table work - cutting, drawing. Lots of singing today.

He also had a good speech session at APT with Lisa. Said he was in a good mood.

The downside? His ABA session did not go well, according to Rebecca. She said he was in a good mood, but very, very distracted and unfocused. He didn't complete his drills and she had to call his name out a lot to get his attention. I thought he did ok considering I didn't hear any crying or protests, but I do understand how Nikko stands there looking up into the ceiling, off in his own world, and just *clicking* with his mouth. It can be maddening. I've been yelling his name from the kitchen to call him back to eat. I have to physically go get him. It's not fun. I wonder when his unfocused-ness is TOO MUCH...?

Hurt Toe

Poor Nikko. He's into closing the doors in our house, whenever he gets a chance. He was closing the bathroom door when his right 2nd toe must have got caught between the door and the doorway. He started crying in pain and I arrived to see blood welling under his toenail. It didn't gush out, just stayed underneath and turning it black. His toe didn't swell up big, but he was in obvious pain. Nikko wouldn't let me put an icepack on it for long at all, and he slunk away trying to protect his toe. I let it pass and just watched him, wondered how he'd be the next day.

Today, he was hobbling around on the side of his foot, but was in good spirits. He was able to lie on his tummy and hoist his feet up, and was able to walk by dragging his foot sideways. I tried to put his shoes on before ABA, just to test the fit, and he was NOT happy about it. This worried me because he was destined to go to school today. I warned Kathy about his foot and she told me later that he wasn't affected by it during his drills. When it came time for socks and shoes for school, Nikko was so not thrilled. I lured him into his shoes with the promise of school and his backpack and his teachers. Outside while waiting for the bus, he dragged his foot around like Quasimoto. The school report said that he didn't fuss or cry about the foot but walked gingerly and slowly. I saw that here at home, too. He's still able to motor around on it, even step on it at times, and also jump a little. But I hope it gets much better by tomorrow, and the day after.

A HF Nikko

Today is Sunday. If I don't blog about something within a day, and if I don't write it down to remember, then I'll most likely forget it and that defeats the purpose of the success of the blog. Luckily I jotted some things down from Wednesday so that should keep me updated. The ABA Team met on Wednesday afternoon to get on the same page about doing the drills and handling Nikko. I took some notes and realized that it helped to outline some things we should work on with Nikko now:

1.) Work on YES or NO. Try offering Nikko things he doesn't like to encourage a NO. They have to be super, super dull because he seems to show an interest in almost everything in the ABA object bag, even a paper clip.
2.) PRETEND ACTIONS. Drink from the cup. Comb the hair. Nikko needs help in showing how to do these things.
3.) TURN TAKING.

On Thursday morning, Jenna came over to observe Sarah's session since Sarah wasn't able to come to the meeting the day before. At the end, they both found it was really helpful because Sarah could get Jenna's input regarding a mystery behavior, and Jenna could silently observe to see if Nikko would do something different with each therapist. That was exactly what was happening. Jenna surprised me by saying that she was impressed with how high-functioning Nikko was. I blinked with an "Excuse me? Please explain." Jenna said Nikko can process who he can manipulate. Knowingly refuses to work, walks away in defiance but looks back over his shoulder to see if you will follow him. That shows he is thinking in complex ways, and that's pretty high functioning. I was interested in her explanation because I have never considered Nikko high functioning, but I based that on his lack of language. The high/moderate/low functioning debate is interesting and varied because a child can be HF but still have severe sensory issues that hamper him from being social, or LF and be able to talk and express himself. That's where people throw out the labels and say it doesn't matter whether one is HF or LF. I would still sit and think Nikko is LF, but truly when I consider how Jenna described Nikko's complex thinking, I am apt to not want to call him LF ever again.

On Friday, we went to meet/work with Karen, the ST we haven't had a chance to meet yet. She told me she never read Nikko's file and likes to get a feel for a child by working with them first. Karen asked me what I wanted to accomplish through speech therapy and I told her he needed progress in both receptive and expressive language. When it was time for Nikko to go work, he took Karen's hand and they started walking away. Karen said, "Bye, Mom!" and that made Nikko wrench his hand out of hers. He looked at me expectantly. I told him to go play and he still looked anxious. I said to Nikko, "Kiss me good bye," and then he went running away with Karen.

Even before the session started, Nikko was getting antsy in the waiting area. He saw my backpack and was eyeing the front pocket. We both knew what was in it so I put it in my lap to keep him from going for the zipper. He leaned in expectantly so I said, "First speech, then......" He replied, "Lollipop!" I was really happy that he was able to finish my sentence without me prompting him or telling him the right word. At the end of the session I had to make good on my promise and give him a lollipop.

On Saturday, New Year's Day, we went to my cousin's house in Elgin. It was a big house with carpeting and stairs, and a lot of kids ran about. It warmed me to watch Ronin and Audrey run off with their older and younger cousins and play hide and seek. Nikko was also in the mix, although he opted to drop out and bother me for cake with icing or something else bad for him. He found a Winnie The Pooh bear and ran along with it for a time. During the gift opening he was trying to open everyone's gift and was antsy in the enclosed space. He got attached to Sabrina's mini-figurine Tinkerbell and she kept an eagle eye on him so that it would find its way back to her. I assured Sabrina that when we left, I would pry it from him and return it to her, even though he would be crying. Minutes before we left I noticed Nikko left Tinkerbell on a table while turning his attention to a toy figurine of Kai-Lan that was in a box. When it was time to leave, Nikko didn't want to part with Kai-Lan, which belonged to Jovy, so I had to pry the box away from him as he cried and screamed for it while going out the door. Other than that, it was a pretty good day for Nikko. I can never tell what toy he will become attached to. I can't guarantee that he will want to carry around a certain car, and there was even a new birthday cake toy that I was certain Nikko would claim as his own and want to bring home. But Nikko didn't get attached to it and preferred the figurines over bulkier toys. I look forward to when the holidays and gifts are completely over so that the kids' expectations are no longer centered around getting presents.