I was getting Nikko ready to sit on the toilet while Denis would give Ronin a bath. The two boys were scrambling for a second on the bathroom floor and then Nikko came up with his hands over his face, which was contorted into the beginning of a cry.
I looked sternly at Ronin, who stood in the tub, and he squawked, "No, Nikko, don't take my car! I want my racing car!"
I gave Nikko a hug and told him I was so sorry. He cried a little bit, and then he put his open hand over his face, dragging the hand downward and said, "Sad. Sad. Sad." I was surprised and smiled over at Denis because Nikko signed Sad, said it, and identified an emotion correctly.
I also made the sign for Cry (dragging both index fingers down your cheeks like tears) and said, "Cry? Cry, Nikko?" He stopped and looked at me for a second, then scrunched up his eyes and cheeks and made a fake whining noise as if he were crying. I burst into laughter because he was acting out a Cry, while his real cry was finished a minute ago. He knew what he was doing. I started signing Happy and Laugh to move on, and to get him sitting on the toilet.
Friday, April 29, 2011
Two letters
Nikko drew circles (rather, ovals) all over a page of a spiral notebook. I was chanting his name and the letters in it, and he started repeating his letters, too. I put the brown marker in his hand and actually let him guide me in drawing two letters: K and O. So we almost spelled his name. I definitely praised him for his written efforts!!
Thursday, April 28, 2011
On-paper gains
4/27/11 School Report - Speech: Seemed very tired today. Kept putting his head on the table. Worked on requesting, vocab and questions.
I don't know why, but Nikko's been waking up around 5:50am, opening his child-proof knobbed door, racing down the hall to our room and leaping into our bed. He babbled and babbled for about 40 minutes when I finally, grumpily escorted him out of the room and into the living room to await his sibs' wakings. And he stayed awake until I put him on the bus. I don't know if he falls asleep going to school, and I really hope he does. I know that he was sleeping on the way home from school and I hope that extra boost helped him have a successful ABA session with Rebecca.
Two things to note: yesterday Nikko was sitting at the kitchen table with a tablet of blank paper in front of him and markers strewn across the surface. I wasn't even paying attention to him until I walked by and saw that he had drawn an assortment of circle shapes on the paper. They looked like blobs, some ovals and other misshapen circles, but they were indeed circles all on one page. I praised him for his artistic efforts and made note to tear out that page and save it.
The second thing happened today. In his backpack there was a sheet of paper with his name written in yellow marker. Underneath he had attempted to copy the letters. I asked Nikko what it was and he said, "N, I, K, K, O." He didn't say "Nikko" so I don't know if he understood it was his name. I ran my finger under the letters and said "Nikko!" but he spelled each letter out again. That's fine with me, quite honestly. I'll take it!
I don't know why, but Nikko's been waking up around 5:50am, opening his child-proof knobbed door, racing down the hall to our room and leaping into our bed. He babbled and babbled for about 40 minutes when I finally, grumpily escorted him out of the room and into the living room to await his sibs' wakings. And he stayed awake until I put him on the bus. I don't know if he falls asleep going to school, and I really hope he does. I know that he was sleeping on the way home from school and I hope that extra boost helped him have a successful ABA session with Rebecca.
Two things to note: yesterday Nikko was sitting at the kitchen table with a tablet of blank paper in front of him and markers strewn across the surface. I wasn't even paying attention to him until I walked by and saw that he had drawn an assortment of circle shapes on the paper. They looked like blobs, some ovals and other misshapen circles, but they were indeed circles all on one page. I praised him for his artistic efforts and made note to tear out that page and save it.
The second thing happened today. In his backpack there was a sheet of paper with his name written in yellow marker. Underneath he had attempted to copy the letters. I asked Nikko what it was and he said, "N, I, K, K, O." He didn't say "Nikko" so I don't know if he understood it was his name. I ran my finger under the letters and said "Nikko!" but he spelled each letter out again. That's fine with me, quite honestly. I'll take it!
Wednesday, April 27, 2011
Ice cream cones
4/26/11 School Report - OT: Obstacle course several times - then worked on coloring and name printing. Responded to greeting appropriately and spelled out letter in name. Gave Nikko free choice at the end of session. Good working today!
I'm on high alert. Nikko had ONE poop smear yesterday, and today his only poop came twice by the end of the evening. I wonder if a pattern is forming here, at 1/4 capful of Miralax. He's still in good spirits. His toy hoarding has morphed into carrying around some velcro ice cream cones from IKEA. In fact, is it sad to say, that on Easter at my mom's house it was the first time that the kids ate ice cream from ice cream cones? I think I've just carried ice cream sandwiches in the freezer, or dished out the occasional ice cream in a bowl. But lately the images of ice cream on TV are portrayed in a cone, so the kids were tiring of the sandwiches. I can't say it wasn't a messy scene. However, today on our grocery trip I slipped a box of ice cream cones in the cart, with the intention of getting some Ronin-safe ice cream from Whole Foods and regular ice cream from anywhere else.
I'm on high alert. Nikko had ONE poop smear yesterday, and today his only poop came twice by the end of the evening. I wonder if a pattern is forming here, at 1/4 capful of Miralax. He's still in good spirits. His toy hoarding has morphed into carrying around some velcro ice cream cones from IKEA. In fact, is it sad to say, that on Easter at my mom's house it was the first time that the kids ate ice cream from ice cream cones? I think I've just carried ice cream sandwiches in the freezer, or dished out the occasional ice cream in a bowl. But lately the images of ice cream on TV are portrayed in a cone, so the kids were tiring of the sandwiches. I can't say it wasn't a messy scene. However, today on our grocery trip I slipped a box of ice cream cones in the cart, with the intention of getting some Ronin-safe ice cream from Whole Foods and regular ice cream from anywhere else.
Monday, April 25, 2011
Catching up
4/20/11 - School report - Speech: Worked on yes/no. Said "Hi Ms. Winters"!
I haven't posted in a few days. Nothing's wrong, we had Easter at my mom's house today, it's just that I'm sitting back and watching Nikko, listening and thinking about stuff. His sing-songy self is constant. Jenna and Kathy noted this during his ABA session on Thursday, that he can get preferred tasks completed but easily gets distracted. He had a good speech session on Friday morning with Karen. She pushes him to request things and he seems to comply, as she waits him out through any frustrations he has. She also noted that he has problems filtering out background noise.
I received Nikko's OT evaluation in the mail. Karen Conkle, the lady who conducted the eval, warned me on that day that the report would sound very negative, but in actuality she saw a lot of good things during the eval. But his actual eval states a lot of the things I already knew. Little attention span. Unfocused. Prefers his own activities. Low muscle tone. I really hope we'll be able to get him OT over the summer. I think it will make a world of difference before K starts.
I haven't posted in a few days. Nothing's wrong, we had Easter at my mom's house today, it's just that I'm sitting back and watching Nikko, listening and thinking about stuff. His sing-songy self is constant. Jenna and Kathy noted this during his ABA session on Thursday, that he can get preferred tasks completed but easily gets distracted. He had a good speech session on Friday morning with Karen. She pushes him to request things and he seems to comply, as she waits him out through any frustrations he has. She also noted that he has problems filtering out background noise.
I received Nikko's OT evaluation in the mail. Karen Conkle, the lady who conducted the eval, warned me on that day that the report would sound very negative, but in actuality she saw a lot of good things during the eval. But his actual eval states a lot of the things I already knew. Little attention span. Unfocused. Prefers his own activities. Low muscle tone. I really hope we'll be able to get him OT over the summer. I think it will make a world of difference before K starts.
Wednesday, April 20, 2011
Speech gain :)
4/13/11 School Report - Speech: Good job verb identification. Worked on requesting.
4/14/11 School Report - Speech: worked on yes/no, requesting, playing doll house. He wanted help with a game and said "help" 3 times.
Those were from last week. Our IEP meeting was yesterday. Today he went back to school.
4/19/11 School Report - Bathroom: Nikko went potty and was dry.
OT: Lots of great talking today. Responded to my greeting "Hi, Mrs. I," did so with Ms. Winters, too! Also aid "get chair" when on the swing. Nikko helps me put swing up & down with a chair. I believe was Nikko's way of wanting ot get off swing. Also worked at table with drawing/tracing/printing name.
Speech: Nikko was very happy today! Worked on requesting, saying "no" to cauliflower snack. Went to office for greetings, said "Hi Ryndak" & "K" for Mrs. Kaczynski! I asked, "Where's Ronin?" he said, "Home". I said no - he said, "Audrey's at home." & then got "Mommy's at home." GOOD DAY!!!
Um, that's just amazing. AMAZING!!
Today Nikko had swim class (for another three weeks through the NWSRA) and he seemed very excited about getting out of the door when Denis came home. He approached me eagerly to put on shoes and socks, shoved his jacket at me to help him put it on, and was literally nose-pressed against the door impatiently waiting for Denis. That Nikko loves the water. He's been behaving regarding the clothes-stripping, or maybe I've been better at catching him before he decides to strip. I really have to do some research on motility, because I see Nikko in the hallway, hunched over, crossed legs, and straining to push something out. When the diaper change happens, it's a small, mushy mess. We're at 1/4 capful now and I'm hoping that the poop smears will become less frequent. That is the goal, and it is trending less very slightly. I mean very.
I fear the fruit snack invasion again. I bought some from Costco, to try giving it as a snack to the kids. Of course they love it. However, Nikko is starting to ask for it frequently. He is mastering opening the doors WITH the child-proof handles on, and can access the pantry. He saw the fruit snack box in the pantry the other day and was repeatedly opening that door this morning. I had to take the box and hide it in our room. Now when Nikko opens the door he looks a little confused at the void where the box had been.
One big thing to note from the meeting yesterday was that we were able to discuss the whole "I want_____" interaction while Linda H. was present. Both the teachers and I were having to work really hard to get Nikko to say it as a precursor to getting a reinforcer. Linda told us that we should stop demanding the I Want from him. It's a level of language that he is just not at right now, and we should go back to the single word requesting. I asked for how long and the answer was kind of unclear. I guess it depends on Nikko, when he is able to show us that he understands the value of language and the value of requesting in a more complex way to get what he wants.
4/14/11 School Report - Speech: worked on yes/no, requesting, playing doll house. He wanted help with a game and said "help" 3 times.
Those were from last week. Our IEP meeting was yesterday. Today he went back to school.
4/19/11 School Report - Bathroom: Nikko went potty and was dry.
OT: Lots of great talking today. Responded to my greeting "Hi, Mrs. I," did so with Ms. Winters, too! Also aid "get chair" when on the swing. Nikko helps me put swing up & down with a chair. I believe was Nikko's way of wanting ot get off swing. Also worked at table with drawing/tracing/printing name.
Speech: Nikko was very happy today! Worked on requesting, saying "no" to cauliflower snack. Went to office for greetings, said "Hi Ryndak" & "K" for Mrs. Kaczynski! I asked, "Where's Ronin?" he said, "Home". I said no - he said, "Audrey's at home." & then got "Mommy's at home." GOOD DAY!!!
Um, that's just amazing. AMAZING!!
Today Nikko had swim class (for another three weeks through the NWSRA) and he seemed very excited about getting out of the door when Denis came home. He approached me eagerly to put on shoes and socks, shoved his jacket at me to help him put it on, and was literally nose-pressed against the door impatiently waiting for Denis. That Nikko loves the water. He's been behaving regarding the clothes-stripping, or maybe I've been better at catching him before he decides to strip. I really have to do some research on motility, because I see Nikko in the hallway, hunched over, crossed legs, and straining to push something out. When the diaper change happens, it's a small, mushy mess. We're at 1/4 capful now and I'm hoping that the poop smears will become less frequent. That is the goal, and it is trending less very slightly. I mean very.
I fear the fruit snack invasion again. I bought some from Costco, to try giving it as a snack to the kids. Of course they love it. However, Nikko is starting to ask for it frequently. He is mastering opening the doors WITH the child-proof handles on, and can access the pantry. He saw the fruit snack box in the pantry the other day and was repeatedly opening that door this morning. I had to take the box and hide it in our room. Now when Nikko opens the door he looks a little confused at the void where the box had been.
One big thing to note from the meeting yesterday was that we were able to discuss the whole "I want_____" interaction while Linda H. was present. Both the teachers and I were having to work really hard to get Nikko to say it as a precursor to getting a reinforcer. Linda told us that we should stop demanding the I Want from him. It's a level of language that he is just not at right now, and we should go back to the single word requesting. I asked for how long and the answer was kind of unclear. I guess it depends on Nikko, when he is able to show us that he understands the value of language and the value of requesting in a more complex way to get what he wants.
Tuesday, April 19, 2011
Nikko in a nutshell
Since I'm sitting here waiting for my damp hair to dry, I figured I could do some quick typing of 7 numbered needs and supports.
Today was Nikko's IEP meeting. It went well and despite my underlying fears that Nikko will be eaten alive in Kindergarten, I was pleased with the accommodations and supports that will be made available to him next year. I will type the goals another night, but for now I wanted to get the Autism Considerations documented. I believe the school team and Linda created this sheet, which basically profiles Nikko, his needs and what supports should be given to him:
1. Verbal and nonverbal communication needs
Student Needs: Nikko demonstrates significant verbal and nonverbal language delays. Nikko uses single words and a few rote phrases to communicate inconsistently. Adult prompting is needed to elicit verbal communication including greeting, answering questions and requesting. He can be observed to use non-purposeful verbalization including singing/humming when he is not actively engaged in an activity.
Supports Identified: Continued use of picture schedule and picture choice boards during the day. Nikko requires others to be very intrusive to gain his attention. Wait time is required for Nikko to verbally request an object before it is given.
2. Social interaction skills and proficiencies
Student Needs: Nikko is not yet consistently responding to greeting and needs verbal and visual cues. When he does respond to greeting he will repeat "hi Nikko." Nikko plays functionally with toys appropriately. He will play alongside with peers using the same materials. He continues to need adult facilitation to maintain turn-taking.
Supports Identified: Adult facilitation and direct instruction on how to play/interact with peers. Teach use of appropriate social phrases. Direct practice of social skills.
3. Needs resulting from unusual responses to sensory experiences
Student Needs: Nikko shows an increased need for deep pressure inputs. He can be sensitive at times to loud noises.
Supports Identified: Use of frequently scheduled movement breaks. Use cube chair to define personal space. Use of visual cues to help with coping.
4. Needs resulting from resistance to environmental change or change in daily routines.
Student Needs: Nikko is generally compliant with changes to routine but he can become anxious or upset when a preferred activity is denied.
Supports Identified: Use of visual picture schedule. Verbal reassurance and use of scripted coping statements.
5. Needs resulting from engagement in repetitive activities and stereotyped movements.
Student Needs: Nikko has shown great improvement in this area. He no longer lines up toys. He will still look at objects out of the corner of his eye but this has significantly decreased this year. When moving in the hallway, Nikko frequently is seen to drag his hand or body along the wall.
Supports Identified: Visual, verbal and physical redirection for increased participation.
6. Need for any positive behavioral interventions, strategies and supports.
Student Needs: requires hand-over-hand to learn new motor tasks. Break down directions.
Supports Identified: Positive reinforcement. Break down directions. Hand over hand to learn new motor tasks. Scripted language cues. Modeling appropriate behavior.
7. Other needs which impact progress in the general curriculum, including social and emotional development.
Student Needs: Lack of sustained attention and focus interferes with participation. His demonstration [of] skills is inconsistent. Nikko can be seen to avoid activities and it is difficult to determine if he is able to do the activity or is avoiding the task.
Supports Identified: Verbal, visual, physical redirectioning. Consistent review of learning skills. Break down tasks. Use of firm, intrusive, direct commands to make sure Nikko understand what is expected of him.
Another document I liked that wasn't the actual IEP but was the additional notes page:
On the 4/18/11 meeting, it was recommended that Nikko should begin kindergarten by attending 30 minutes of the opening routine and 30 minutes of centers, music, library and P.E. Nikko will begin by attending 1-hour per day in kindergarten and gradually increase time spent in the kindergarten classroom. Time not spent in kindergarten will be used for ABA and work station time. Discrete Trials/ABA and work situation should be at least 4 days per week.
Today was Nikko's IEP meeting. It went well and despite my underlying fears that Nikko will be eaten alive in Kindergarten, I was pleased with the accommodations and supports that will be made available to him next year. I will type the goals another night, but for now I wanted to get the Autism Considerations documented. I believe the school team and Linda created this sheet, which basically profiles Nikko, his needs and what supports should be given to him:
1. Verbal and nonverbal communication needs
Student Needs: Nikko demonstrates significant verbal and nonverbal language delays. Nikko uses single words and a few rote phrases to communicate inconsistently. Adult prompting is needed to elicit verbal communication including greeting, answering questions and requesting. He can be observed to use non-purposeful verbalization including singing/humming when he is not actively engaged in an activity.
Supports Identified: Continued use of picture schedule and picture choice boards during the day. Nikko requires others to be very intrusive to gain his attention. Wait time is required for Nikko to verbally request an object before it is given.
2. Social interaction skills and proficiencies
Student Needs: Nikko is not yet consistently responding to greeting and needs verbal and visual cues. When he does respond to greeting he will repeat "hi Nikko." Nikko plays functionally with toys appropriately. He will play alongside with peers using the same materials. He continues to need adult facilitation to maintain turn-taking.
Supports Identified: Adult facilitation and direct instruction on how to play/interact with peers. Teach use of appropriate social phrases. Direct practice of social skills.
3. Needs resulting from unusual responses to sensory experiences
Student Needs: Nikko shows an increased need for deep pressure inputs. He can be sensitive at times to loud noises.
Supports Identified: Use of frequently scheduled movement breaks. Use cube chair to define personal space. Use of visual cues to help with coping.
4. Needs resulting from resistance to environmental change or change in daily routines.
Student Needs: Nikko is generally compliant with changes to routine but he can become anxious or upset when a preferred activity is denied.
Supports Identified: Use of visual picture schedule. Verbal reassurance and use of scripted coping statements.
5. Needs resulting from engagement in repetitive activities and stereotyped movements.
Student Needs: Nikko has shown great improvement in this area. He no longer lines up toys. He will still look at objects out of the corner of his eye but this has significantly decreased this year. When moving in the hallway, Nikko frequently is seen to drag his hand or body along the wall.
Supports Identified: Visual, verbal and physical redirection for increased participation.
6. Need for any positive behavioral interventions, strategies and supports.
Student Needs: requires hand-over-hand to learn new motor tasks. Break down directions.
Supports Identified: Positive reinforcement. Break down directions. Hand over hand to learn new motor tasks. Scripted language cues. Modeling appropriate behavior.
7. Other needs which impact progress in the general curriculum, including social and emotional development.
Student Needs: Lack of sustained attention and focus interferes with participation. His demonstration [of] skills is inconsistent. Nikko can be seen to avoid activities and it is difficult to determine if he is able to do the activity or is avoiding the task.
Supports Identified: Verbal, visual, physical redirectioning. Consistent review of learning skills. Break down tasks. Use of firm, intrusive, direct commands to make sure Nikko understand what is expected of him.
Another document I liked that wasn't the actual IEP but was the additional notes page:
On the 4/18/11 meeting, it was recommended that Nikko should begin kindergarten by attending 30 minutes of the opening routine and 30 minutes of centers, music, library and P.E. Nikko will begin by attending 1-hour per day in kindergarten and gradually increase time spent in the kindergarten classroom. Time not spent in kindergarten will be used for ABA and work station time. Discrete Trials/ABA and work situation should be at least 4 days per week.
Saturday, April 16, 2011
"Ice Cream" phrase
For a few weeks now, Nikko has been carrying around what looks like a plastic egg carton carried (without the bottom, so it looks like a ladder frame) and he put six little fabric ice cream balls in each square. They fall out when not strategically placed in its own square, so it's a pain to find these balls when they become loose.
Tonight I was driving home from the in-laws when I turned around briefly to glance at the kids. Nikko saw my head turn and he locked his eyes on me.
"Dropped the ice cream," he said.
"Oh yeah? Let me see if I can reach it." I was at a red light, thankfully, so I quickly reached behind my seat (not an easy feat) and was able to scoop up one of the balls on the car floor and hand it back to Nikko. It dawned on me that he actually TOLD me an independent thought, something that he didn't repeat back to me. He did this earlier today, possibly yesterday, when we were in the kitchen, but I can't remember what phrase was said. This was the most distinct, and I wanted to get it recorded so I don't forget when it happened.
I'm noting this because on Tuesday I had started giving Nikko half a capsule of a Culturelle probiotic in his morning juice/chocolate milk. On the same day I started his 1/2 capful of Miralax. I would like to think that the probiotic might "help" Nikko's speech somehow.
Tonight I was driving home from the in-laws when I turned around briefly to glance at the kids. Nikko saw my head turn and he locked his eyes on me.
"Dropped the ice cream," he said.
"Oh yeah? Let me see if I can reach it." I was at a red light, thankfully, so I quickly reached behind my seat (not an easy feat) and was able to scoop up one of the balls on the car floor and hand it back to Nikko. It dawned on me that he actually TOLD me an independent thought, something that he didn't repeat back to me. He did this earlier today, possibly yesterday, when we were in the kitchen, but I can't remember what phrase was said. This was the most distinct, and I wanted to get it recorded so I don't forget when it happened.
I'm noting this because on Tuesday I had started giving Nikko half a capsule of a Culturelle probiotic in his morning juice/chocolate milk. On the same day I started his 1/2 capful of Miralax. I would like to think that the probiotic might "help" Nikko's speech somehow.
Wednesday, April 13, 2011
Monster trucks
4/12/11 School Report - OT: Tolerated swing for a few minutes. Did great shape drawing at wipe off board but then at table- did very little on paper. Worked on cutting.
ST: Good job making choices today: "blue box" or "green box". Good job with no; with is this [person's name]? Worked on vocab and wh?.
This morning, Ronin was at the kitchen table playing with two monster trucks when Nikko came over, took one and started running it back and forth. It took place within 6 or 7 seconds, and then Nikko walked away to get something from another table.
Ronin said, "Nikko, play with me," and he tried to give Nikko a truck.
Nikko wasn't even looking at Ronin anymore. He looked over Ronin's head and was lining up a red felt barn.
Ronin repeated, "Nikko, play with me," and kept trying to hand over a truck to Nikko, and I felt my heart breaking into little pieces. I took Ronin into my lap and told him that Nikko was distracted and had moved on to playing something else, but maybe he would play with Ronin later on. Ronin looked very disappointed and walked away dragging his feet. My suggestion to find Audrey and ask her to play was heard with deaf ears.
At Nikko's OT evaluation at 10a, we sat on the busy side of APT to wait for the evaluation to end. Ronin brought his trucks and befriended another boy in the waiting room who also had monster trucks, albeit bigger ones. They ran their trucks around the room, under chairs, crashing them into the air and each other. Ronin had a blast with this kid named Brice. I heard Brice ask Ronin, "How old are you?"
"I'm three years old," Ronin replied.
"Three!" Brice was surprised. When Ronin asked his age, Brice replied, "Five." They chitchatted about how old each would be in two years, and then they went back to crashing monster trucks together. I was relieved that Brice didn't write off Ronin as a little baby toddler, and I was thankful that Ronin was able to hold his own in a conversation with a complete stranger boy. It made me wistful later on that Ronin had so much fun playing with this stranger boy and could not muster up one iota of interest in his own brother. It is not fair.
ST: Good job making choices today: "blue box" or "green box". Good job with no; with is this [person's name]? Worked on vocab and wh?.
This morning, Ronin was at the kitchen table playing with two monster trucks when Nikko came over, took one and started running it back and forth. It took place within 6 or 7 seconds, and then Nikko walked away to get something from another table.
Ronin said, "Nikko, play with me," and he tried to give Nikko a truck.
Nikko wasn't even looking at Ronin anymore. He looked over Ronin's head and was lining up a red felt barn.
Ronin repeated, "Nikko, play with me," and kept trying to hand over a truck to Nikko, and I felt my heart breaking into little pieces. I took Ronin into my lap and told him that Nikko was distracted and had moved on to playing something else, but maybe he would play with Ronin later on. Ronin looked very disappointed and walked away dragging his feet. My suggestion to find Audrey and ask her to play was heard with deaf ears.
At Nikko's OT evaluation at 10a, we sat on the busy side of APT to wait for the evaluation to end. Ronin brought his trucks and befriended another boy in the waiting room who also had monster trucks, albeit bigger ones. They ran their trucks around the room, under chairs, crashing them into the air and each other. Ronin had a blast with this kid named Brice. I heard Brice ask Ronin, "How old are you?"
"I'm three years old," Ronin replied.
"Three!" Brice was surprised. When Ronin asked his age, Brice replied, "Five." They chitchatted about how old each would be in two years, and then they went back to crashing monster trucks together. I was relieved that Brice didn't write off Ronin as a little baby toddler, and I was thankful that Ronin was able to hold his own in a conversation with a complete stranger boy. It made me wistful later on that Ronin had so much fun playing with this stranger boy and could not muster up one iota of interest in his own brother. It is not fair.
Tuesday, April 12, 2011
2nd Opinion / Speech woes
I got a return phone call from the gastro. I asked her if it would be ok if I switched Nikko from mineral oil back to Miralax? My reasoning being that he was constantly leaking oil and it had created some new behavioral problems, specifically him wanting to rip off his diaper whenever he felt something leaking. She said sure, that was fine. I told her that we left off at a capful as the dosage. She asked if I wanted to try it at 3/4 capful and I told her that like the mineral oil, where she concluded that he was being overdosed at 3 tablespoons, at everything above 1/2 a capful he was having poop smears frequently. She said she didn't want him to go below a 1/2 capful and I said fine. Probably to help ease him back into Miralax. Fine. I told her that I'd give it a try for two weeks to see if a pattern develops and then I'd call her. She said that was fine. And that was it.
I am now going to look for a second opinion (thanks, Heather).
On another topic, it's a wonder that I don't go get a degree in Speech Language Pathology, because had I known I was supposed to get one of those as well as my degree in Gastroenterology, I would have been better equipped to deal with Nikko today or over the past few weeks. Why is it that Nikko chatters and babbles, is echolalic and can sing a simple tune he hears on the TV or can repeat a silly phrase his brother chanted seconds before, but when *I* ask him to say, "I want_____" he looks at me with horror and starts cranking up the whine machine? This morning he saw a cylindrical container of stick cookies with a chocolate dipping sauce, procured from an asian grocery and called Yan Yan, and stuck his hands toward the box which was on a high shelf in a cupboard. I saw an opportunity to fulfill a request of a desired reinforcer so I said, "What does Nikko want? I want Yan Yan." How did I know that I would be repeating that phrase, calmly and angrily, for the next half hour while Nikko cried, yelled, thrashed and tantrummed? He would NOT say "I want." He would NOT do what I asked him, demanded him, pleaded him to repeat. 30 minutes is A LONG TIME when it's dragging and your kid is crying/whining. I couldn't give in. He eventually left the kitchen and moved on to explore other things in a huff. I was bent out of shape as well, feeling defeated that he wouldn't give in.
Fifteen minutes later he was looking toward the Yan Yan again. I decided to switch tactics again. The Cheese Puff/Pizza tactic was identifying the object and saying it really fast. This time I tried dramatic singing. Ronin was also in the kitchen and I incorporated his help by having him sing, pointing to him at his turn, then my turn, then Nikko's turn. I would make Nikko look at me, put my hand in the air in a sweeping gesture, and bellow in a low voice that rose almost an octave and then settled halfway at the end, "iiiiiiiiiiii, wAAAAAAAAAAAAAAAAAnt, Yan Yaaaaaaan!" Ronin and I sang a few rounds when Nikko finally sang it back quickly to me. HOORAY! And so he was rewarded. I said this a few days ago, I'll say it again: HOW HARD CAN IT BE????
He challenged me again in the afternoon with a Chuggington DVD. I wanted him to say either I Want or I Watch. It took ten minutes of whining and fighting me, but with a dramatic singing again I got him to say I Want Chuggington. I wish I didn't have to battle my kid to get him to talk. I can see that he wants to communicate ("Open door," "All finished" in reference to the iPod) but when I make a demand/request of him, he shuts down. Maybe he's not confident enough in his vocabulary? This evening he wanted some markers that were shaped like eggs and he managed to say eggs at one point, but he was using another filler-word for markers that I can't even remember how to say. He was terribly frustrated because I refused him these markers (they were leaking) and his crying fit was quite horrible even for his standards. But hey, he eventually moved on, with the help of some chocolate chips. Ha ha.
I am now going to look for a second opinion (thanks, Heather).
On another topic, it's a wonder that I don't go get a degree in Speech Language Pathology, because had I known I was supposed to get one of those as well as my degree in Gastroenterology, I would have been better equipped to deal with Nikko today or over the past few weeks. Why is it that Nikko chatters and babbles, is echolalic and can sing a simple tune he hears on the TV or can repeat a silly phrase his brother chanted seconds before, but when *I* ask him to say, "I want_____" he looks at me with horror and starts cranking up the whine machine? This morning he saw a cylindrical container of stick cookies with a chocolate dipping sauce, procured from an asian grocery and called Yan Yan, and stuck his hands toward the box which was on a high shelf in a cupboard. I saw an opportunity to fulfill a request of a desired reinforcer so I said, "What does Nikko want? I want Yan Yan." How did I know that I would be repeating that phrase, calmly and angrily, for the next half hour while Nikko cried, yelled, thrashed and tantrummed? He would NOT say "I want." He would NOT do what I asked him, demanded him, pleaded him to repeat. 30 minutes is A LONG TIME when it's dragging and your kid is crying/whining. I couldn't give in. He eventually left the kitchen and moved on to explore other things in a huff. I was bent out of shape as well, feeling defeated that he wouldn't give in.
Fifteen minutes later he was looking toward the Yan Yan again. I decided to switch tactics again. The Cheese Puff/Pizza tactic was identifying the object and saying it really fast. This time I tried dramatic singing. Ronin was also in the kitchen and I incorporated his help by having him sing, pointing to him at his turn, then my turn, then Nikko's turn. I would make Nikko look at me, put my hand in the air in a sweeping gesture, and bellow in a low voice that rose almost an octave and then settled halfway at the end, "iiiiiiiiiiii, wAAAAAAAAAAAAAAAAAnt, Yan Yaaaaaaan!" Ronin and I sang a few rounds when Nikko finally sang it back quickly to me. HOORAY! And so he was rewarded. I said this a few days ago, I'll say it again: HOW HARD CAN IT BE????
He challenged me again in the afternoon with a Chuggington DVD. I wanted him to say either I Want or I Watch. It took ten minutes of whining and fighting me, but with a dramatic singing again I got him to say I Want Chuggington. I wish I didn't have to battle my kid to get him to talk. I can see that he wants to communicate ("Open door," "All finished" in reference to the iPod) but when I make a demand/request of him, he shuts down. Maybe he's not confident enough in his vocabulary? This evening he wanted some markers that were shaped like eggs and he managed to say eggs at one point, but he was using another filler-word for markers that I can't even remember how to say. He was terribly frustrated because I refused him these markers (they were leaking) and his crying fit was quite horrible even for his standards. But hey, he eventually moved on, with the help of some chocolate chips. Ha ha.
Sunday, April 10, 2011
Med shift?
No accidents today, but that is only because I watched Nikko like a hawk. Every time he disappeared down the hallway, every time he turned into his room, my head would appear around the corner and I'd ask, "Nikko, want to change your diaper?" I didn't have the PECS diaper picture with me because there's supposed to be one in his room, but he took it into his bed and it's lost within the sheets. He was not fetching the other picture from the kitchen either, so I'd verbally lead him into his room and change him there. Only once did he emerge from Ronin's room with his shirt off and his sweatpants below his hips, about to thumb off his diapers before I came around the corner. A few times he chanted, "Take a bath" as if he soiled his diaper and we should take him into the bathroom.
I just had a thought.
I think I'm going to call the gastro tomorrow and tell her I'd like to switch Nikko back to Miralax. I think the mineral oil could be causing Nikko to feel like something is constantly dripping from his butt, which is TRUE, and that is causing him to have this need to be changed. It's not about getting him on the toilet, because he's not showing an interest in the toilet at all. This leakage is creating a new behavior. I think I'm seeing the same results right now that I saw with the Miralax at the capful level. Thus, I think Nikko is being over-medicated. The gastro made this conclusion at the 3 tablespoon level with mineral oil, but we're reducing his dosage here. Why didn't she do this at the Miralax capful level? As a baseline, why didn't we go backwards from 1/2 capful? Perhaps she wanted to see what lactulose and mineral oil would do. She keeps mentioning the Fletcher's, but Nikko doesn't like the taste of it. Try giving him a teaspoon of that every night. Nope!
I just had a thought.
I think I'm going to call the gastro tomorrow and tell her I'd like to switch Nikko back to Miralax. I think the mineral oil could be causing Nikko to feel like something is constantly dripping from his butt, which is TRUE, and that is causing him to have this need to be changed. It's not about getting him on the toilet, because he's not showing an interest in the toilet at all. This leakage is creating a new behavior. I think I'm seeing the same results right now that I saw with the Miralax at the capful level. Thus, I think Nikko is being over-medicated. The gastro made this conclusion at the 3 tablespoon level with mineral oil, but we're reducing his dosage here. Why didn't she do this at the Miralax capful level? As a baseline, why didn't we go backwards from 1/2 capful? Perhaps she wanted to see what lactulose and mineral oil would do. She keeps mentioning the Fletcher's, but Nikko doesn't like the taste of it. Try giving him a teaspoon of that every night. Nope!
Saturday, April 9, 2011
Good speech, but bad communication :(
How about good news first?
4/8/11 School Report - Speech: Good speech day today. He requested songs on his own. He answered "what" questions with field of 4 pictures with 70 accuracy. Good greetings in office & picture naming. HE had good attention at my center today too. Given a category picture - handed it to the correct person pretty independently!
On Friday, Nikko also had a good speech session at private speech (before school). It started out rough because the infamous jar of candy sat atop the reception counter and for the third straight week he was reaching for it and making it his sole focus. When Karen came to get him, he resisted at first. Nikko even looked like a fish on a hook for a minute when he flopped on the floor while she held one arm. Thankfully he stood up and willingly walked away in a whiny huff. I continued to hear his whines for a good ten minutes. After the session Karen told me that he pulled out all the stops at the beginning because he didn't want to cooperate verbally (aka was being lazy, those are my words). One of his shoes had fallen off and he wouldn't say Shoe to get it back from her. Frustrated, he took the shoe off his good foot and put it on the "lost" foot. As if that made things better! But he did end up saying, "Karen, SHOE!" And so she gave it back to him. That is awesome.
Another thing he did was to run to the light switches in defiance when he refused to name what he wanted from a toy closet. Apparently he stood in front of the light switches, put his hand on it, and then looked over his shoulder at Karen to see her reaction. She was stoic. And he couldn't believe she wasn't telling him No or to get away or do something else. Of course he tired of that tactic. It kind of amazes me that she is getting Nikko to respond by not giving in to his demands. Does that even make sense? It sounds really stupid as I typed it. Basically she is getting results because she is not giving in. The thing I find enviable is that he is responding to her, within minutes, whereas here at home it is taking a LONG time for him to respond when he initially doesn't want to. It took 20-30 minutes for him to react and whine with me because he wanted pizza and I wouldn't give it to him unless he said I Want. Same old story. The minute I start to model "I", he rockets into whine mode. We took a break because he ran away and didn't come back for a bit. Later on, perhaps after he forgot about our long requesting session, I tried the Cheese Puff tactic from last week:
"Nikko," I led him to the kitchen counter where the pizza slice was in sight. In a semi-excited voice I pointed to the plate and said, "What is that?"
He looks, and says, "Pizza."
Quickly I said in a muted voice, "Iwantpizza."
Nikko said, "I waaaaaaant...pizza..." and as he drew out the "a" he looked at me as if he knew that I had caught him at the right moment to get him to repeat what I wanted him to say. I immediately praised him and gave him the pizza.
HOW HARD DOES THAT HAVE TO BE????????? Exasperating. Really.
That was probably the only shining moment of our day except for the short reprieve we took in the afternoon to take the kids to the park to play since the weather was exceptional. Nikko woke at 5:30a, opening his door on his own and wandering into the nursery, I took him into our bed to try to get him to sleep more. I don't know why he woke up so abruptly. Basically he was having poop smears, running to Ronin/Audrey's bedroom and ripping off his diaper in an attempt to take it off and possibly clean himself up. He wiped poop onto Audrey's Tinkerbell body pillow (not salvageable), the area carpet (also not salvageable) and then left some random wipes with poop smeared on it in Ronin's bed and the floor. He did this twice in their room. The stench of poop made me want to vomit, especially because I'm sporting a runny nose and coughing today. Temperature. Great. Denis and I cleaned up the messes and bathed him twice, but he managed to escape our sight a few more times today and take off pee diapers, plus one other poop one that was manageable. This behavior is so heartbreaking to me because he cannot seem to communicate what he wants, freely. I have to watch him like a hawk, watch his signals (putting a hand on his butt) and ask him constantly if he wants a diaper change. I found two PECS pictures of a diaper and started enforcing that he give me this picture when he wanted a diaper change. I have to keep putting it in his hand to give back to me, because he is not picking it up of his own free will. I am lamenting this behavior and silently cursing the gastro for not stepping up to help me more. I must rethink my strategy for this; he will be ten years old by the time he develops a regular poop pattern!! ARGH!
4/8/11 School Report - Speech: Good speech day today. He requested songs on his own. He answered "what" questions with field of 4 pictures with 70 accuracy. Good greetings in office & picture naming. HE had good attention at my center today too. Given a category picture - handed it to the correct person pretty independently!
On Friday, Nikko also had a good speech session at private speech (before school). It started out rough because the infamous jar of candy sat atop the reception counter and for the third straight week he was reaching for it and making it his sole focus. When Karen came to get him, he resisted at first. Nikko even looked like a fish on a hook for a minute when he flopped on the floor while she held one arm. Thankfully he stood up and willingly walked away in a whiny huff. I continued to hear his whines for a good ten minutes. After the session Karen told me that he pulled out all the stops at the beginning because he didn't want to cooperate verbally (aka was being lazy, those are my words). One of his shoes had fallen off and he wouldn't say Shoe to get it back from her. Frustrated, he took the shoe off his good foot and put it on the "lost" foot. As if that made things better! But he did end up saying, "Karen, SHOE!" And so she gave it back to him. That is awesome.
Another thing he did was to run to the light switches in defiance when he refused to name what he wanted from a toy closet. Apparently he stood in front of the light switches, put his hand on it, and then looked over his shoulder at Karen to see her reaction. She was stoic. And he couldn't believe she wasn't telling him No or to get away or do something else. Of course he tired of that tactic. It kind of amazes me that she is getting Nikko to respond by not giving in to his demands. Does that even make sense? It sounds really stupid as I typed it. Basically she is getting results because she is not giving in. The thing I find enviable is that he is responding to her, within minutes, whereas here at home it is taking a LONG time for him to respond when he initially doesn't want to. It took 20-30 minutes for him to react and whine with me because he wanted pizza and I wouldn't give it to him unless he said I Want. Same old story. The minute I start to model "I", he rockets into whine mode. We took a break because he ran away and didn't come back for a bit. Later on, perhaps after he forgot about our long requesting session, I tried the Cheese Puff tactic from last week:
"Nikko," I led him to the kitchen counter where the pizza slice was in sight. In a semi-excited voice I pointed to the plate and said, "What is that?"
He looks, and says, "Pizza."
Quickly I said in a muted voice, "Iwantpizza."
Nikko said, "I waaaaaaant...pizza..." and as he drew out the "a" he looked at me as if he knew that I had caught him at the right moment to get him to repeat what I wanted him to say. I immediately praised him and gave him the pizza.
HOW HARD DOES THAT HAVE TO BE????????? Exasperating. Really.
That was probably the only shining moment of our day except for the short reprieve we took in the afternoon to take the kids to the park to play since the weather was exceptional. Nikko woke at 5:30a, opening his door on his own and wandering into the nursery, I took him into our bed to try to get him to sleep more. I don't know why he woke up so abruptly. Basically he was having poop smears, running to Ronin/Audrey's bedroom and ripping off his diaper in an attempt to take it off and possibly clean himself up. He wiped poop onto Audrey's Tinkerbell body pillow (not salvageable), the area carpet (also not salvageable) and then left some random wipes with poop smeared on it in Ronin's bed and the floor. He did this twice in their room. The stench of poop made me want to vomit, especially because I'm sporting a runny nose and coughing today. Temperature. Great. Denis and I cleaned up the messes and bathed him twice, but he managed to escape our sight a few more times today and take off pee diapers, plus one other poop one that was manageable. This behavior is so heartbreaking to me because he cannot seem to communicate what he wants, freely. I have to watch him like a hawk, watch his signals (putting a hand on his butt) and ask him constantly if he wants a diaper change. I found two PECS pictures of a diaper and started enforcing that he give me this picture when he wanted a diaper change. I have to keep putting it in his hand to give back to me, because he is not picking it up of his own free will. I am lamenting this behavior and silently cursing the gastro for not stepping up to help me more. I must rethink my strategy for this; he will be ten years old by the time he develops a regular poop pattern!! ARGH!
Friday, April 8, 2011
Catching up, and gastro follow-up
Good Lord, I don't know why I'm behind on a few days of posts, but I am. Sorry.
4/5/11 - School report - OT: Some successes today. Tolerated swing for a few minutes with a low arc. Also used "I want" 3 times with verbally cued with visual picture! Also worked on name.
Speech: requesting, greetings, ?'s
4/6/11 - nothing to report
4/7/11 - School report - Speech: Good job naming animals, foods, household items. Tried "What" ?'s.
Early this morning I took Nikko to North Shore University Hospital (aka Glenbrook Hospital) for an x-ray ordered by the gastro. Surprisingly, we didn't have to wait very long at all. A nice man in the waiting room even slipped Nikko a racing car magazine to see if Nikko would be interested in it. I had to point at the pictures but Nikko was able to say Racing Car. When it was our turn, I told the radiologist that Nikko had autism and wasn't good at talking, and would also not be cooperative on the table. She had to hold his legs while I pinned down his torso and arms while yet another radiologist took the x-ray. They got it on the first try, though, and I was relieved.
At the end of the day, the nurse Pam called to tell me that Nikko's x-ray showed a minor blockage that the gastro deemed "normal." She then said that we should try to lower the dosage, maybe by half a tablespoon. I told her I'd lower it and then give it another week to see results. Am I going to do it at 2.5 or even 2 tablespoons? NO. Clearly I have it charted that giving Nikko a higher dosage wasn't reducing the number of times he pooped. I think my results were better at 1.5 tablespoons, quite honestly. When we upped it to two, his smears increased from 3-4 a day to 5-6. So I'm going to try the lesser dosage. I really, REALLY hate how it's taking a long time to deal with these issues. It's a wonder that any potty training can take place at this point, except for maybe a #1. Definitely not for #2s.
4/5/11 - School report - OT: Some successes today. Tolerated swing for a few minutes with a low arc. Also used "I want" 3 times with verbally cued with visual picture! Also worked on name.
Speech: requesting, greetings, ?'s
4/6/11 - nothing to report
4/7/11 - School report - Speech: Good job naming animals, foods, household items. Tried "What" ?'s.
Early this morning I took Nikko to North Shore University Hospital (aka Glenbrook Hospital) for an x-ray ordered by the gastro. Surprisingly, we didn't have to wait very long at all. A nice man in the waiting room even slipped Nikko a racing car magazine to see if Nikko would be interested in it. I had to point at the pictures but Nikko was able to say Racing Car. When it was our turn, I told the radiologist that Nikko had autism and wasn't good at talking, and would also not be cooperative on the table. She had to hold his legs while I pinned down his torso and arms while yet another radiologist took the x-ray. They got it on the first try, though, and I was relieved.
At the end of the day, the nurse Pam called to tell me that Nikko's x-ray showed a minor blockage that the gastro deemed "normal." She then said that we should try to lower the dosage, maybe by half a tablespoon. I told her I'd lower it and then give it another week to see results. Am I going to do it at 2.5 or even 2 tablespoons? NO. Clearly I have it charted that giving Nikko a higher dosage wasn't reducing the number of times he pooped. I think my results were better at 1.5 tablespoons, quite honestly. When we upped it to two, his smears increased from 3-4 a day to 5-6. So I'm going to try the lesser dosage. I really, REALLY hate how it's taking a long time to deal with these issues. It's a wonder that any potty training can take place at this point, except for maybe a #1. Definitely not for #2s.
Monday, April 4, 2011
Yellow
Nikko came into the kitchen and pulled at my hand.
"What's up, Nikko?"
"Car?"
"Oh really? What kind of car?"
"Racing car?"
"OK, let's go look for your car in the living room." I am pretty tired from going to bed so late and therefore was on the verge of crabbiness. I don't enjoy looking for the kids' lost toys under couches and in dusty corners, but it has to be done or they'll be lost forever.
After digging through a few bins I say, "Nikko, what color is the car? What color is it?"
He replies, "Yellow car."
"OK! I exclaim, "this helps narrow down our search!" Luckily, I found the car on an eye-level table a few feet away, whereas minutes before I was scouring the toy bins. Nikko was content with my find and I prompted a Thank You Mommy from him.
Why is this exciting? Because Nikko is able to communicate with me that he has a need. Because Nikko understood the question I was asking him, and answered it appropriately. That he knew his car was yellow, even though it was out of his sight.
"What's up, Nikko?"
"Car?"
"Oh really? What kind of car?"
"Racing car?"
"OK, let's go look for your car in the living room." I am pretty tired from going to bed so late and therefore was on the verge of crabbiness. I don't enjoy looking for the kids' lost toys under couches and in dusty corners, but it has to be done or they'll be lost forever.
After digging through a few bins I say, "Nikko, what color is the car? What color is it?"
He replies, "Yellow car."
"OK! I exclaim, "this helps narrow down our search!" Luckily, I found the car on an eye-level table a few feet away, whereas minutes before I was scouring the toy bins. Nikko was content with my find and I prompted a Thank You Mommy from him.
Why is this exciting? Because Nikko is able to communicate with me that he has a need. Because Nikko understood the question I was asking him, and answered it appropriately. That he knew his car was yellow, even though it was out of his sight.
Slow weekend
3/31/11 - School Report - Bathroom: Had a loose bowel movement. Brown - with a lot of gas! (On the toilet! Yay!)
4/1/11 - School Report - Speech: Liked singing. Worked on vocab, requesting & ?'s.
Not much to post this weekend. On Saturday we took the kids to an Asian supermarket called Assi International. Our goal was to get Thai basil for a dish, but we ended up exploring the place. The seafood section was HUGE and had the freshest fish, crab and lobster around. Right in front of me were trays of fresh fish and squid. No wonder the place smelled so fishy. There were bins of blue shell crabs making their last, slow crawl of their lives, and a fish tank of lobsters and larger crabs. I liked the place.
Today (Sunday) we had a playdate at Jovy and Max's house. Nikko didn't do a lot of interacting but was able to work around the rooms and didn't pick any fights with Max, who happens to be 18 months old. Unfortunately, Nikko had three poop smears in a row so I'll certainly be calling the gastro's office tomorrow to reiterate what an epic fail we're having with mineral oil.
4/1/11 - School Report - Speech: Liked singing. Worked on vocab, requesting & ?'s.
Not much to post this weekend. On Saturday we took the kids to an Asian supermarket called Assi International. Our goal was to get Thai basil for a dish, but we ended up exploring the place. The seafood section was HUGE and had the freshest fish, crab and lobster around. Right in front of me were trays of fresh fish and squid. No wonder the place smelled so fishy. There were bins of blue shell crabs making their last, slow crawl of their lives, and a fish tank of lobsters and larger crabs. I liked the place.
Today (Sunday) we had a playdate at Jovy and Max's house. Nikko didn't do a lot of interacting but was able to work around the rooms and didn't pick any fights with Max, who happens to be 18 months old. Unfortunately, Nikko had three poop smears in a row so I'll certainly be calling the gastro's office tomorrow to reiterate what an epic fail we're having with mineral oil.
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