Monday, November 30, 2009

Stop! Go!

I'm not avoiding a post, I've just been compressed for time to finish things after the kids go to bed, even though I am so grateful we finally got a portable dishwasher. I'm STILL very busy. Yeah, sure, I could cut out some frivolous minutes by not being on Facebook, but since it's one of my only social gateways to the outside world, it actually helps keep me sane. So why chuck it? Oh yeah, so I can clean up the kitchen, mop the floors, load laundry and catch up on reading autism boards.

Yesterday (Saturday) and today were pretty ordinary days. Except for last night, where I went to a gun safety seminar that Denis signed me up for. I learned quite a bit, and got to shoot a variety of revolvers and semi-automatic guns on a range. I also shot fairly well given that I haven't shot any gun for over 13 years or so. Denis fed the kids and put them to bed and didn't have as hard a time as he has in the past. "I must be getting better at it," he remarked. YEA!

Yesterday morning and this morning as well, Nikko was not really in the best of moods. He woke up decent, but he's been ending up whining on the kitchen floor before breakfast. This morning I attributed it to him not wanting me out of his sight since I wasn't home when he went to bed. Understandable. There was another point during the day when I was playing "Sandwich" with him where he's on the floor and I roll on top of him to put my weight on him, giving him some input, or pressing up to him against the couch in a full-body smush. When I played this with him, he seemed to enjoy it, but I think I kept pressing on when he decided he'd had enough. When I didn't let up, he got really upset and then he was bawling and swatting at me. I was very apologetic and told him I'd stop when he told me to. He had to calm down from that one. Speaking of stop, something else he's been doing lately takes his word "Go" and uses it to our disadvantage. At school he was prompted to the phrase "Ready, set..." and Nikko would say, "GO!" I noticed at home when I would say "Stop", he would say, "GO!" Sounds appropriate, right? Well, nope. Sometimes he will be doing something like hitting a toy hard against the oven or hitting at Ronin (because Ronin started it, nonetheless) and I'd restrain Nikko and tell him, "Stop that! Stop!" Nikko would turn to me and say, "GO!" every time I said Stop, until I could read the pain in his face that he was misunderstood and his last word would be "GOOOOOOOOOO!" and he'd be crying. That makes me feel so bad that I realize I have to use another word besides Stop when getting him to stop an unwanted action. Haven't figured out what that word is going to be yet, unfortunately.

Nikko will be back in preschool on Tuesday. We don't have any scheduled outings for tomorrow, but it's supposed to be partly sunny and in the 40's so maybe I can take the kids outside to play. If not, I will try to take them somewhere, anywhere. They need to get out of the house! It's going to be hard until Thursday night because Denis is in Springfield on business and I have to put the kids to bed by myself. Then I have to clean up everything after they are asleep by myself. I did it tonight and it's 2am and there's things I'd really love to accomplish but have now run out of time. I'm going to have to dig deep for patience for the next four days. Deeeeep.

Friday, November 27, 2009

Random autism thoughts

Thanksgiving Day (yesterday) was busy because we did double-duty: Mom's house at 1pm, and the in-law's house at 6pm. The kids did rather well at both places despite having so many different people around, lots of noise. Nikko was happy to investigate other people's plates at Mom's house, looking for their dessert. I had made some chocolate chip cookie bars that were Ronin-friendly, and Nikko gravitated toward that a lot. At the in-law's house, Nikko seemed interested in exploring their treadmill and stationary bike than playing with any of the toys in the basement. I think they enjoy the living room because it is wall-to-wall carpeting where they can run and tumble on the floor without getting hurt.

I didn't take advantage of Black Friday because I didn't have anything specific to hunt for. Definitely wanted to avoid the crowded malls, and absolutely wouldn't be able to navigate it with kids in tow. Denis had to run some errands after lunch and opted to take Nikko with him. I advised him to take along some Dum Dum lollipops just in case. I know he wanted to try to have a normal outing without giving in to anything, but I told Denis that Nikko will probably get agitated at some point and if he wanted to get something accomplished, it would be better to bring the Dum Dums than not have anything on hand at all. He told me later on that he did end up giving Nikko a Dum Dum, and when Nikko finished it he was patting down Denis' coat looking for more. I'm still at odds about having just-in-case food during outings vs. not having anything on hand. That one online post a lady wrote back to me, when I made an inquiry about behavior in the store, really made me feel guilty. She said that it was my fault that Nikko cries and tantrums for a treat because I taught him that if he tantrums, he'll get something. That sounded harsh, but there's probably some truth to that because I don't want Nikko to burst out and make a scene. But the other thing this lady said was that I had a choice: Do I want Nikko to function like everyone else in society, even though it will be hard, or do I want to keep him quiet for the short term, which is easy for now? Sounds like a baited question, but it made me think, and am still thinking about it.

Another thing that was on my mind lately was the two stories this past week in the Chicago Tribune regarding autism. They covered two kinds of biomedical-related therapies, which were chelation (removing harmful metals from the body) and hyperbaric oxygen therapy. The article was obviously biased and against these therapies, but pointed out some reasons why many families with autistic kids go these routes even though pediatricians tell them not to because there's no scientific proof that they work. A big reason is that right now there's no cure for autism, and many people don't want to wait 10-20 years for some breakthrough research to find a cure. These kids need help NOW, and if there is something that comes along promising to aid/cure autism, people are willing to try it. Parents are desperate. They want their child to get better. I can relate to this because a few months ago I read some forum postings from a lady who said she tried a vitamin called dimethylglycine on her non-verbal child and the next day he was talking and continued to talk. Of course, hearing news like that makes me start wondering if it would work on Nikko. I researched it a little bit and almost went further but then realized that without knowing how much of it to give to Nikko, I could overdose him. Tricky business, without proper guidance. But what is proper guidance nowadays? Ah, the way these thoughts swirl in my head.

Thursday, November 26, 2009

CHIP / CORN

3:50p - CHIP and CORN are the two sounds Nikko is making when prompted. "Chp" = Chip, "Kohn" = Corn. It's interesting, really. I think he knows that Chip is really a chip. I'm almost scared to announce to the world that Nikko said two almost-words (aside from GO), like I mike jinx it. It's snacktime here, and that sent everyone to the kitchen. Ronin had some Oreos and veggie stix, Audrey had animal cookies and veggie stix, and Nikko started out with pop-CORN (Pirate Booty corn puffs). He also had an Oreo, but when I prompted him to say Cookie he protested angrily and started crying and throwing himself on the floor. I think he knew I was trying to make him work and he didn't want to do it. I made him sign instead so he could earn his cookie. Later, I pulled out a bag of Gardetto's rye chips and he was curious. He came to me, signing but didn't know what to sign for. I made the sign for Chip (left palm facing up, right palm skating face down as if to chip off the left hand's fingertips), and also said "Chip". Then Nikko said, "Chp, chp!" So I gave him some.

Speaking of breakthroughs, I've given the boys cups that have straws attached to drink their juice at most meals. Breakfast milks still come in sippy cups. But this is to facilitate speech in Nikko, and for Ronin it's supposed to help tighten the seal his lips make so he'll drool less. But now that he's been drinking from straws more often, he picked up the harmonica and was blowing in and out of it very nicely. I was impressed! I also saw him pick up the pinwheel I got over the summer and he blew into it, making the wheel spin. Before the straw, he would try to blow and nothing happened, no motion whatsoever, just a lot of spit. I think the straw is doing wonders. I wonder if the straw is helping Nikko too, or if he's just progressing to the next level.

Wednesday, November 25, 2009

Parent/Teacher Conference

Today was Nikko's Parent Teacher Conference at Westbrook. I brought along an IEP they sent me with his first semester progress. He had eight goals and I've edited them here to show the progress:

1. Will sort a variety of preacademic functional objects (colors, shapes, animals) into a field of 2, in 3/5 trials. Benchmark Met.
2. Will participate appropriately in routine structured small group activities with no more than 2 verbal/picture cues, for 2 minutes, in 4/5 trials. Not Met. Nikko is inconsistent with his participation.
3. Will follow 3 different 1-step directions in 4/5 trials. Not met - understands stand up, turn around, sit down, walk, run but is not consistent. Often needs physical prompts as well.
4. Will independently use signs, gestures, pictures and/or words to express wants/needs in 2/10 trials. At snack time he requests 8/10 with pictures or signs. In other areas not met yet.
5. When given an individual picture schedule, Nikko will independently transition between activities 25% of the time. Benchmark Met.
6. Given verbal and visual sues, Nikko will demonstrate the following 2/2 of the following skills 1) respond to his name (turn, look) 2) respond appropriately to greetings from peers or adult independently in 2/5 trials. Met with verbal and visual cues.
7. With adult support and visual cues, Nikko will take off his backpack and place it in the designated location on 4 out of 5 opportunities. Benchmark Met.
8. In a one to one setting with visual and verbal cues, will perform one of the following skills in 4 of 5 trials 1) complete a 6 to 8 insert puzzle 2) string 5 beads 3) color with approximation a simple picture with 60% coverage. Benchmark Met. Nikko is able to string beads independently.


The teachers also included something they called "Three stars and a wish":
*Nikko has adjusted quickly to the school routine. He shows an awareness of his surroundings. He seems to be happy at school.
*Nikko plays in a variety of play areas. He plays alongside his peers, using similar/same play materials.
*Nikko is using sign language and pictures to communicate.
WISH: We would like to see Nikko continue to improve his usage of sign language and/or pictures to communicate and transition in the classroom.


Finally, Mrs. I showed us video of Nikko doing his morning sensory diet when he comes to school. They take him to a room to do the wheelbarrow, jump on the trampoline, sit on the floor facing to do row-row-row-your-boat, and then some fine motor table skills. She also gave me a printout of what we can do for him at home for his home sensory diet. After looking at the sensory diet, as well as all the PECS stuff and picture schedule materials they gave me, I realize that I am really going to have to restructure our days so that Nikko gets more out of them than just watching TV and some tickle games. I think having Ronin and Audrey around tend to keep me from doing complex things, but Ronin's at an age where he can learn the same stuff and maybe excel. Audrey might be harder to control, but I'll have to come up with activities for her, too. This doesn't mean it has to be school around here all the time. It can't be! But I will have to strategize how to incorporate the large sensory breaks into the afternoon, and do some mini sensory breaks as well. Sure we'll have days when we have to go to the store, or to mom's house, but I'll think up a generalized schedule, something that can be tweaked. Kathy gave me the picture schedule materials that will be useful to keep Nikko on task, for getting ready for school, to use in the bathroom, eating, and getting ready for bed. I have a LOT of materials to go through!

My mom was kind enough to come out and watch the kids while we were gone. She told me there was crying in the beginning from Nikko, which woke up Ronin, but then he calmed down and went to watch Nemo. When she was getting ready to leave and was getting kisses and hugs from the kids, Nikko independently leaned in and gave her a kiss, then ran off. That put a smile on Mom's face. :) After dinner, we were trying to prompt Nikko to say Chip for some Sun Chips, and he made a "chuh" sound. We took it as an attempt and rewarded him, but when we tried it again later, he was making the sound without looking at us so we pulled back. I had asked his teachers if we should continue to try verbally prompting Nikko and they all agreed that hitting Nikko with visual (pictures and signs) and verbal cues was the best thing we could do with him. Nikko didn't take a nap again today so he was ready for la la land. I have read on some autism boards that some moms give their kids melatonin to sleep better, but these kids have severe sleep issues. Some kids get only two or three hours a day! Nikko gets nine and doesn't seem to have any middle of the night wakings at this point, so I guess that should be satisfactory to me. I really hope he doesn't start having FEWER hours of sleep or it will also affect Ronin, who is in the same room. If that even happens, we would probably have to put Nikko back in the middle room, alone, and Ronin and Audrey would share a room for a while. I figure that there are probably other problems to just giving melatonin straight up to Nikko, like an overdose of melatonin. I don't like to mess with the medical stuff when it comes to Nikko. Maybe having a home sensory diet will help push him toward a daily nap...maybe...

Tuesday, November 24, 2009

Pop-CORN

2:52p Nikko signed Popcorn around 2:45p. I didn't really want to give it to him because lunch finished around 12:45 and I was about to totally resist when I figured I could try to get him to work for it. I said POP-corn many times and I thought he said POP in the beginning. I wasn't sure, so I tried to get him to say it again. He didn't want to, but I was pleasantly persistent today. I pointed my fingers up like popping corn, saying Pop, Pop, Pop-corn! I got down on my knees to his eye level, I held his mouth in an O, I put his fingers on my mouth, on his mouth, and was working with Pop Pop to get him to at least make that sound again. He was getting frustrated, and then he made a rough "kuh" sound. I took it to mean Corn, and said, "Pop - CORN? Corn?" I rewarded him for the effort. That's what my book said to do. Man, I feel like a speech therapist right now, but isn't getting paid for being one. Right now Nikko is eating his Corn Puffs, but my Williams Sonoma catalog is sitting right beside him on the picture of a huge sandwich cookie cake. If it were life-sized, it would give me a tummy ache!

Monday, November 23, 2009

@Yummy Gourmet

Not a whole lot to report regarding behavior. Today was my nephew Max's baptism and when we got to the church I had already decided that we would hang around the back of the pews. There were 5 other kids getting baptized and there were a lot of people around. Nikko did rather well, only had a few vocal outbursts but nothing terrible. He followed me like a duckling. Ronin, on the other hand, tends to be more challenging in public when it requires being quiet. He can't help but vocalize what he sees. We had lunch at Yummy Gourmet in Arlington Heights and were lucky to have a seated area that was somewhat separated from the public. We chose to sit at a table separate from the main u-shaped table because we would be busy paying attention to getting our kids fed and entertained, rather than socialize. That's really the stage we're at right now, but hopefully next year we'll be able to sit and have more conversations with people around us. The boys were in front of the DVD player but it ran out of juice because I forgot to recharge it completely. FIGURES. Maybe the screen-saving lighting wasn't on, I'm not sure. But the kids survived without it, and toward the end of lunch all three of my kids were running around the open u of the table arrangement along with Jovy and the Penepacker girls. It was a nice time overall.

Nikko doesn't have school all this week because it's Thanksgiving week. I will have to find ways to fill up our time, and will probably laminate some cards for games that I got from that activity night at school. I also have to meet up with Daria either tomorrow or Wednesday to get her some baby clothes.

Saturday, November 21, 2009

Tag

There was a form in Nikko's backpack for the PTA's movie night in two weeks. I had to decline and felt guilty, but also know that the kids would NEVER sit still for this. Not at this age, and even though it's in a gym, it would be too exciting. Maybe next year.

It was a Nemo/Cars kind of day because my head felt so cloudy. I have some pressure behind my ears, and at night my sore throat kicked in. Small temperature, so I'm eating soup. The kids and I are passing colds back and forth to each other, and I heard Audrey coughing up a storm earlier. This sucks! One noteworthy thing that Nikko did today was show Audrey some real attention. She was laying on the floor looking at the mini family picture album I assembled for Nikko. Nikko looked over her shoulder, as if to look at the pictures, but instead put his nose and chin on Audrey's head for a few long seconds as if to give her some kisses. She didn't flinch or push him away, and it was so cute! Another thing that happened was after dinner. Ronin and Nikko were running back and forth from the living room to the kitchen door and back again. I watched to see Ronin tag Nikko (or push him, really), then Nikko would run away from him, and Ronin would catch up to him and tag him again. Nikko didn't tag back, but he'd laugh when Ronin pushed him. The push wasn't as violent as the other kinds I've seen today, so I didn't interrupt and let them both have their giggly moments. :)

Friday, November 20, 2009

Inside joke

As I got Nikko ready for school, he made a funny face where he gritted his teeth, jutting out his jaw, and shook his head quickly back and forth as if he were vibrating. I copied him except I opened my eyes wider to exaggerate the expression. He looked at my face and totally cracked up. Then he copied ME. Then I copied HIM. And we had this nice little exchanged that made us laugh together before school. We did it a few times later in the day and it was almost like an inside joke for us to share. That was a nice part to my day.

Thursday, November 19, 2009

Pissed at me / The short bus

8:56a - Didn't have a great send-off to school, unfortunately. When it came time to dress up for school and change his diaper, I normally just do it in the kitchen with Nikko standing up, but today I thought I could do it in my bedroom and put him on the bed. He must have thought it was a game, or didn't like the change in routine, because he flipped over onto his tummy and didn't want to be changed. Tickling him started laughter, but I didn't want to disturb Audrey and Ronin so I put him on the floor. Nikko protested, and then he didn't want to put on his clothes at all. I tried to gently coax him into his sleeves by talking about going to school, but his crying was turned on loud and I was irritated. I finished dressing him in the kitchen and had him still sulking by the time we got outdoors into the rain. Luckily the bus was rolling down the block so we didn't have to wait long. I put him in his seat, put the Big Blue Box across the aisle, then came back and gave him a kiss on the head. I think after I buckle him in, he looks up and expects that g'bye kiss. The morning will fly by until he comes home, then I plan to lunch everyone and ship us off to Mom's for a few hours.

12:06 - Wow, this kid hates my guts today. He came home from preschool ok, but wanted to watch Wiggles and wasn't satisfied with one of the TV episodes I recorded. He seemed to want to watch one of those single 3 episodes On Demand, so I finally switched to one after his whining. Even then, he was not satisfied. I went to the kitchen to make lunch, very exasperated. Even now, he's really pissed at me. I heated a second round of nuggets and he got mad that they were too hot. I'm not sure anything I do for him today will make him happy.

12:48a - We made it to mom's house, but it took FOREVER for me to finish feeding Audrey, get the backpack assembled, get the kids' diapers changed, get their socks, shoes and coats on, and walk out the door. I didn't get on the road until 3p and I really craved a nap. Never got it. As I was driving, I looked over to my right and saw one of the short school buses. I looked at the windows and saw two kids sitting toward the back. One kid was laughing heartily to himself while the kid behind him sat just staring out at the traffic. Ronin announced that he saw the school bus and I agreed with him. Suddenly the thought that this was the kind of bus Nikko was supposed to be riding to school every day hit me like a ton of bricks. The bus he takes is a regular one with the first five or six seats equipped with a pull-down panel to reveal a five-point harness. All the preschool kids are required to be buckled in. Because the harness exists on this new bus, Nikko doesn't need special bus services, with the exception of getting picked up in front of the house. I started crying because thanks to the Transportation Department of District 57 and Westbrook School, Nikko doesn't have to suffer the stigma of riding the short bus to school. Even if he did have to ride the short bus and it came to our house every day, I would be very grateful for the bus service, but right now Nikko gets to be normal and ride a long bus like all the other kids. The short bus gets a bad rap and everyone knows it. Someone on Facebook made a joking reference to stupidity as riding the short bus and I felt completely cold toward the remark because that's what my kid was supposed to be on, and that's not a funny thing. I don't know WHY I had to cry about it, but I was overwhelmed with thankfulness and appreciation.

Dad was off from work today so it was nice to see him around. We mostly stayed upstairs and the living room. Chinny had pinched Ronin's cheeks and he was clearly angry with her for doing it because he shunned and ignored her for a long time. He wouldn't give high fives to her or even look at her willingly. Nikko had slept longer from his car nap, but woke up slightly flustered and ran to the kitchen to find me. Thank goodness his mood was good. I got us home around dinnertime and things quickly forwarded to bath and bedtime.

Wednesday, November 18, 2009

Sensory Diet

9:56a - I checked on Nikko around 10:30 last night, I think. He didn't have a fever and was sleeping soundly. At 1:30a I heard him babbling to himself. I worried that he would get into Ronin's bed, or toggle the doorknob, but he stayed put. I went to bed and heard him chatter a bit more, hoping he wouldn't wake Ronin up. My alarm rang at 6:45a, and I heard Nikko chattering again. I don't know how long he had been awake, but it worries me that he woke up so early after waking up in the middle of the night. Somehow, I have to encourage this kid to take a nap after lunch! This morning he was very "talkative" during breakfast. He didn't finish his pancake, and opted to lean off the table with one leg in his chair. He was LOUD, too. He would babble and then crescendo. His eye contact was also very poor, unless I put my hands on either side of his face and made him look at me. I've concluded that he needs more physical input. This weekend I didn't do much with him at all because I felt crappy and was on the living room floor a lot, trying to catch a nap. He gets restless during the weekends because he's more active in school, and so I emailed Mrs. I to see what his sensory diet is at school. Perhaps I need to do one with him every day he's not at school. Deep down, I know I should have been doing this with him anyway, but having three kids put it by the wayside. I can see that he needs something, though, because his behavior this morning was erratic and it set red flags off in my mind like crazy. I know better. So, that's what I'm going to do. He'll get input from school 4 days a week, but Sat/Sun/Mon I'll make sure to do some deep pressure and trampoline jumping or other activities with him. I'll still try to get him active during the week, too, as usual, but the past three days have been a setback for me because I didn't have the energy or motivation to do it. But that's it, I have to keep moving forward or we'll suffer through Nikko's actions.

12:46 - lunch is over for the boys, Audrey's still working on it. Mrs. I wrote me back and said she'd show me video at the parent/teacher conference on their sensory diet. Nikko came back from school quieter. I hope I can coax him down for a nap after Ronin goes down. Nikko's class picture also came back and I am impressed. He is looking directly at the camera and smiling. He almost doesn't look like my daily Nikko. He looks really happy! Again, it must be school. There is a rotating show-and-tell box (rubbermaid blue box w/lid) and kids guess what's in the rubbermaid. Does it shake? Is it soft? Is it a food? I wonder what we should put in the box for him to bring to school. He's already carried Nemo to school so I have to think of something else.

7:01p - Nikko finally fell asleep at 2:45 until 4:30. That was a good nap for him. But he woke up with flushed cheeks and some lethargy. His temp is around 99.3, so he's probably feeling icky. He didn't touch his dinner, just drank some juice. I gave them early dinner since their naps were beyond a reasonable snack time. If they get hungry again, I'll snack them on something when Denis comes home. Right now they're in front of Nemo, which seems calming for Nikko. Last night and this afternoon Nikko was signing to watch The Wiggles. Luckily, we have Comcast On Demand but unfortunately there are only 3 episodes that I can rotate. I set the DVR for a few episodes during the day to add some variety. I think I'll delete some Thomas episodes, as I think we're moving beyond Thomas slowly. I think I'll try looking at the library online to see if they carry The Wiggles. I blame the Sprout channel for this, because they have The Wiggles in the morning. I remember Shelly the OT telling me that Nikko was probably ready for The Wiggles, and I thought they were a silly-looking group of grown men singing songs I'll never remember. After watching a few episodes, I do think they look a little silly, but they've grown on me, especially the lead singer, Greg Page, who left the group some time in 2002 (?) because he had a medical condition that basically caused vertigo all the time. That sucks! He has a really good voice, though, and he looks like Superman, so it's worth watching after all.

1:35a - Went to Meijer between 10:15 and 12:30. It took me a long time because a.) Meijer is a BIG store, lots of distractions, and b.) when I got to the grocery part, I had to read labels that pertained to Ronin due to his allergies. I got stuck on looking at some food storage containers called Lock and Lock (www.lockandlockusa.com). They looked inviting because we're on that BPA-free kick, and some containers had stickers on them saying BPA FREE, but some didn't. I'm glad I came home to look them up first. They're not shady, but unlike Rubbermaid they don't explicitly indicate which items have BPA and which don't. Some items are made of polycarbonate (which has bisphenol-A) and some are made from polypropylene, which is recycled under the number 5, which usually doesn't have BPA. It's technically misinformation as well, because while number 7 represents Plastics and Other Plastic Materials aka Probably BPA, number 5 doesn't necessarily mean We Have NO BPA. It does mean We Most Likely Don't Have BPA, But Nuke Us At Your Own Risk. I kind of like those odds, to be honest, so I think I'll go back to Meijer soon for these Lock and Lock storage containers, but only the ones made of polypropylene. Gotta love the internet. Back to Nikko, he seemed to perk up once Denis got home, and when bathtime rolled around he was bopping like his usual self. I don't hear him talking to himself right now, that's a good thing. For his show-and-tell, I'm going to put in his green alligator, the one wedged between him and his bed by the wall. I don't want to put in Nemo or Dorie because they might break. Anything else would be too heavy, but hopefully he'll recognize the alligator. I had written a note to Kathy telling her that Nikko had been acting wacky this morning, so watch out. But she wrote back that Nikko wasn't wacky at school and had a great day. Good! I guess he misses school on the weekends.

Monday, November 16, 2009

Not feeling hot

2:48p - Audrey's sitting in the high chair with a lunch of turkey deli meat, mac cheese and cocoa krispies on her tray, which she's mashing with her bottle of milk. As I was mopping up her face I said, "Ready, set..." and Audrey said, "Go," in the prettiest little voice. I paused, not sure she meant it, so I said it again and she repeated, "Go." It broke my heart because she said it so effortlessly and on cue, whereas it took Nikko until he was 3 years old to echo "Go." He doesn't do it all the time when cued, either. He will do it when I'm frustrated at some thrashing behavior he's doing, or wriggling out of a diaper change; I'll tell him to stop, and he'll say, "GO." Not appropriate to the situation, of course. He needs lots of speech therapy, that one.

11:12p - I was getting irritable as the evening dragged on, and Nikko was getting tired but it was too late for him to nap after dinner. I took him in my lap to read some books, and when it was about time to give Audrey a bath Nikko just wanted to lay in my lap and sleep. He felt slightly warm all day but nothing close to a temperature that required meds. When I put Audrey to bed, Nikko was in the room and tried to curl up on the ottoman, but I ushered him out. As I did that, he suddenly heaved and threw up on the floor in the hallway. Luckily we were headed to the bathroom so I stripped him down and Denis took him straight to the tub while I cleaned up the icky, smelly mess. Nikko was whining the entire bath and when Denis was dressing him up, Nikko looked over at me as if he were trying to hold down any more vomit in his throat. He looked sad and uncomfortable, so I immediately softened and tried to reassure him that he'd soon sleep. In fact, after stories he didn't hesitate bedside for his burp cloth; instead, he slid right onto his pillow and looked up gratefully when I handed him his cool burp cloth. Poor thing. I checked on him later and he doesn't have a fever at all, so I wonder if he just had a little upset stomach or buggy feeling. I hope he doesn't throw up tomorrow morning so he can go to school. If he goes, I hope he doesn't throw up at school! I think I am just a bit weary from having this tiring cold. But I plan to get back on track tomorrow and keep my wits about me. The kids don't need their mom yelling at them all the time.

I think Nikko likes watching Nemo because he likes water as well as the fish. He's always had a liking for water. I harbored the idea of getting a fish tank for a while, and dreaded the cleanup. But today I saw a picture of a boat in the ocean on the front page of the Chicago Tribune and noticed that Nikko took a liking to this picture on the table. He would put it near the edge of the table and peer at it, as if he were studying the waves. I suppose it turned into another stim object. I wonder if he'll stim off the fish if we get a fish tank. I'm in no rush just yet.

Saturday playdate

Can't stay on long tonight, am feeling my cold getting slightly worse, need more sleep than I got last night... My fault, really, because after the playdate I had with the Owsleys, my girlfriend Rachel suckered me into hanging out with her after the kids went to bed. She's a nurse and works nights. We went to Chinatown and ate at Seven Treasures, then came back and walked through the 24-hour Meijer in Rolling Meadows. I got home after 3am. That was not my best judgement, but I did have a nice time having adult conversation about things other than the kids, even though they were a big part of it. Having adult company and being around different people can be refreshing, I have discovered, even though that's really a DUH concept. :P

Back to the playdate... It was originally just my 3 kids and Rhonda/Dave's 3 kids, but Rachel and Tony and their two kids showed up and it became a mini-party. It was fun! Audrey was ultra-clingy, but Ronin and Nikko were ok with exploring the living room, watching a train DVD as well as part of the movie UP. Nikko even tussled around with the boys a bit, but Aidan (the 4 yr old) got a little tough with Nikko, taking back a wheeled toy, and Nikko fell flat to the floor, covered his head with an arm, and cried softly. :( When Ronin beats up on Nikko, Nikko does this defensive move as well. I wonder if he does it at school and hope he does NOT. When I went to Meijer later on, we walked up and down each toy aisle. I usually have to do a speedy shopping job, but this time we strolled and I was very impressed with the toy section. In all honesty, their toy section ROCKS. It's better than Target's toy section. I made a list of things I could get the kids for xmas, and will definitely go back there when I have no kids in tow.

Today we stayed at home all day and didn't do anything exciting. Easy. I recently joined an autism forum that branched out from babycenter.com and am at the beginning stages of reading past posts. There's a TON of information on this site that I want to read, but with the kids pulling at my leg or climbing on my back it's really hard to sit still during the day to digest it. I am excited about catching up on all the info, however, because I've seen some posts about ABA that I would love to scour. Tomorrow Nikko doesn't have school, but I'll see how I am feeling. I may introduce a new activity so these kids don't die of boredom or we burn our eyes on the 20th viewing of Nemo. If I'm illin', we won't go out and I won't go to Costco, even though I have to get more Coke. I'm running out!

Friday, November 13, 2009

Playing downstairs

Not as toxic a day for Ronin as yesterday, so that set the stage for a good behavior day all around. Nikko came home from school with a binder in his backpack that had pictures and a family description of his peers and teachers. His is the last page and I forget that his last name starts with a "U" so he'll be at the end of the line. Not like growing up, where my last name started with "A", so I'd be up in front. Nikko was really hungry when he came home and he ate four nuggets, grapes and crackers before I unveiled that I made pizza for him. Two more slices followed. Lunch was early for all the kids (Audrey didn't nap at 11a) so by 1-ish I put Ronin and Audrey down. Nikko wanted to watch Cars so I put it in, with the hopes that he'd get tired and take a nap, too. I saw him yawn once. But he didn't take the bait and stayed awake. After everyone woke up, I gave them snack and pondered where I could take them today. It was chilly outside, plus these kids were getting better from their temperatures earlier in the week. I wanted to go somewhere to see/interact with kids but not be outside for a long period of time. I wanted to go to Woodfield Mall but I didn't want them to pick up any germs from the play area and get sick all over again. Target was an option, but I didn't feel like chasing after them either. Finally I ditched leaving the house and announced that we would play downstairs. I hauled down the vacuum to suck up all the dead and alive spiders, webs, dust and carcasses in the corners. YUUUUCK! I also put a dust mop to the mats because they felt dusty. The kids enjoyed playing with brick blocks and other toys they don't see often, while sitting in front of the big screen to watch The Wiggles. Nikko still didn't get tired enough to sleep. He was glued to my elbow while I vacuumed and even while I tried to coax him to relax on the bean bag chairs. We came upstairs when Denis came home, and he left to go to a gun seminar. It was a bit after 6p so I decided it would be ok to serve dinner. Nikko had four pieces of pizza; he liked it so much! It was a four-cheese DiGiorno pizza that Denis bought. Good choice. I put on Nemo after dinner and that kept Nikko from falling asleep before it was time to take a bath. He was carrying around the plastic Nemo toy that Atz gave him. Nikko really enjoys that movie. I put the three kids to bed tonight, and will do it again tomorrow and the night after. I was getting tired during the boys' bathtime, and slightly irritable because I had been with them all day, but I kept my voice down and didn't yell. Day two of being patient with my kids.

Westbrook work stations event

Today was a hard day for Ronin. It started very early in the morning. Nikko was in his chair by 7:15a and I heard Ronin stirring around 7:25. When he got to his high chair, Nikko showed an interest in his Mater truck and Ronin's Cheerios. Ronin swatted at Nikko's head and protested loudly. It was downhill from there. Everything today was annoying Ronin and he showed it. Pete came for speech and I warned Pete that Ronin was not himself today. Ronin proceeded to whine a bunch of times during play and didn't say many meaningful sentences. If only Pete could listen to Ronin throughout the week, he'd bump his skills up! Ronin really doesn't represent what he can do during one speech session. When Nikko came home later, Ronin repeatedly got angry if Nikko was in his way, leaning on him, or coming near his blocks. I saw Nikko purposely try to take Mater from Ronin during lunch, and when I took Nikko's arm to tell him NO, I saw Nikko smirk so I knew he was totally aware of what he was doing. Sneaky devil.

I tried the crackers/cereal PECS pictures with Nikko during snack and once he saw what I wanted of him, and motioned for him to pick either picture, he proceeded to pick out Crackers and give it to me. He also did this for Peaches. Good job!

Denis was late coming home from work because of delays in the parking garage, and I almost decided to back out of going to that Westbrook event at the school simply because the day had been difficult for all the kids. Nikko hadn't taken a nap all day so he was bound to be cranky this evening, Ronin acted like a terrorist all day, and Audrey was in super fussy mode. But since it was only for an hour and wasn't a lecture format, I decided to speed out of the house and go. The kids cried, of course, and when I came home later Nikko was dozing on the couch so I had to wake him up (too close to bedtime to take a nap). Nikko was super cranky and obstinate during dinner, according to Denis, but that was probably due to his lack of a nap. I'm glad I went, however. When I got to the gym, there were four stations set up: Pre-Academics, Social Behaviors, Speech and OT. That's the order of the tables I visited. Each table had activities and games we could model and take home to try on our kid. Luckily, Margie was at Pre-Academics so she was able to talk directly about how Nikko would fare at a certain game. Same with Kathy at the Speech table, where I took home a sorting game where Nikko should try to categorize pictures into Food, Animals, Vehicles or Clothing. Kathy gave me a green tube that opens and collapses with a big ruffling sound. We've used this tube in OT back in the Early Intervention days, but Kathy told me that Nikko uses this tube to "speak" in one end while you hold the other end up to your ear. Then he reverses it and listens while the other person speaks. This is a great example of turn-taking! We've never used the tube in this fashion in the past, so I was happy to hear of this idea. The Social Behavior table was mostly about toilet training, and finally I was able to talk to Mrs. I at the OT table about Nikko's motor skills progress. Mrs. I described how Nikko had a hard day two days ago, but the next day he was able to bounce back and didn't seem to hold any grudges against her. She feared that Nikko would hate her because she pushes him to do more than one simple task at hand. I told her I sympathized because at home, Nikko can get pretty physical when he doesn't want to do something or get what he wants, and I wasn't happy that the people at school get to see that side of him. But Mrs. I was very nice and said she and the other teachers have seen it all. I also mentioned that I didn't think initially that Nikko was a routine kind of kid, that he seemed to go with the flow. But now that he has preschool and scheduled activities, he seems to transition well to school and likes going. He seems to like routines. I feared that I wasn't doing the right things because at home there's no real structure other than mealtimes. They all pointed out to me that at home he is more comfortable and there doesn't have to be structure at every point in the day, so he can relax and let down his guard. I gathered a lot of new reading material for me to pour over. Some of the games (pre-academic alphabet matching game) can also be used for Ronin, so I'll keep that in mind.

I came home to a happy bunch of kids, and we put them all to bed. I had to go run out to Wal-Mart to get 2% and whole milk because we ran out, and I listened to the Bears on the radio, losing to San Francisco. Pretty disgusted. Denis has to wake up really early tomorrow, and I finished cleaning up the kitchen but got a tad distracted because I decided to give myself a haircut. I sported a grown-out, shaggy bob that had long layers in the front and graduated upward in the back. It was an updated mommy haircut. But I have seen pictures of me lately that show how the layers have grown out and it looks incredibly scraggly. The thought about cutting my hair back into a manageable bob got into my mind and I couldn't shake it, so I did it after everyone went to bed. I'm sure no one here will notice. It didn't turn out too bad, but I'll decide in the a.m.

ONE MORE THING, AGAIN: (seems like I've been doing this a lot lately, finishing a post and then remembering to add something post-post) Today was the first day in - well, let's be honest, EVER - that I relatively kept my cool around the kids today, even in the face of adversity. I can't say I didn't raise my voice; I did, when Ronin pushed Audrey over and I demanded him to give her an apology, when Ronin went ballistic on Nikko's head in the early morning, and probably when Nikko was turning on and off the living room lights with Ronin screaming in the background. I needed to enforce the status quo. But when I felt like shrieking when Ronin got spaghetti on his sleeves during lunch, I squelched the negativity and silently cleaned him up. I think I took some deep breaths during a few other moments. When Nikko started yanking my hand to get McQueen from Ronin, I refused because Ronin had it first. Nikko protested, whining and getting angry even though I tried to direct him elsewhere. When that all failed, I put my hands over my ears and shut my eyes. He got angry and tried to pry my fingers apart, but I held fast and curled up into a ball so he couldn't dislodge my arms. I didn't get mad that he wrestled with me a little bit to get my attention, I just covered my ears and waited it out. He stopped after a few minutes, then gave up. This was a hard day for me, and just when I made a conscious decision to try hard to have patience and not yell at the top of my lungs at these kids, they all had a short-fuse day. But I didn't yell at the top of my lungs for once. I hope I can keep it up. *BIG, HEAVY SIGH*

Thursday, November 12, 2009

Nemo, and no nap

Instead of Lightning McQueen accompanying Nikko to school, today he picked Nemo. I worried that the teachers would get annoyed with me for allowing Nikko to bring a toy to school, so I emailed them with a warning. Later, they replied that they didn't notice Nemo, or McQueen the other day for that matter. It's possible that he put the toy and his burp cloth in his backpack before he went into school. I think that whoever was unbuckling him probably put the toy in the backpack, but when he got back on the bus he pulled them both out. When I unbuckled Nikko from his seat today, Mrs. Beyer told me he was crying in the beginning of the trip. His seat harness was on really tight, so I wonder if it was too uncomfortable for him. He was also sitting closer to the aisle instead of at the window, so there's another wonder. Not that I'm trying to be a sleuth, but I definitely pay more attention to Nikko's surroundings because I am noticing that if things are too much out of place, he will get upset or will notice. He hasn't been as rigid about routines as other ASD kids I've read about, but that may be forthcoming. His progress report today said:
Speech - using pictures to request bubbles and bus - not as easy as crackers. :)

Denis was off today, Veteran's Day, and in the morning he took Ronin with him for errands. He got back before lunch and then said that his friend Patrick was inviting them to go to a park near Menard's. Audrey was still sporting a temperature so I didn't want to take her out today. Denis took the boys and they didn't put up any resistance with me not coming along. I think they had a good time because they came back in good moods and hungry. Ronin had worn sweatpants and I saw some burrs stuck to his leg. When I changed his pants, I was horrified to see that the burrs had scratched his knee and upper thigh with some angry welts. They must have hurt him when he was sitting in the car, and I wondered if he cried out. I felt so bad so I put some hydrocortizone on it. Poor guy. Nikko, who wore jeans, was unscathed. Ronin and Audrey went down for naps soon after, but Nikko just didn't want to take a nap. At dinnertime he actually ate the elbow macaroni with spaghetti sauce I made, which felt great. Ronin, on the other hand, didn't eat it. He was probably used to me using spaghetti noodles instead of the macaroni, which he's used to eating as mac cheese. SHEESH! These kids and mealtimes drive me up the wall. When it was time to give Audrey a bath, Nikko sprung up and accompanied me to the bathroom. He runs in and out, but seems to like being nearby during this process. Since he hadn't napped all day, Nikko was ready for sleep after prayers. Good thing. I think I have to email Linda H. because she still hasn't given me the phone number to the lady that I'm supposed to speak to about clinical trials. I'm supposed to go to Westbrook tomorrow night for a sensory project, just for an hour.

ONE QUICK AMMENDMENT: Margie just sent me a picture of Nikko at school this morning. She said that he went up to the "friends" at school who were on a teeter-totter and got on it himself. It's a picture of Nikko sitting in the front of three kids on a teeter-totter in the playground. How surprising! :D

Tuesday, November 10, 2009

Sad School Day

Today's progress report:
OT - Did a 6 part obstacle with cueing - rolling, jumping, stepping up and down, balance bean, reaching to target. Did really well. Also worked on snipping straws and coloring fruit paper.
Speech - Nikko had a sad day. We have the play area set up as a store with real food (empty) boxes. Wanted crackers and pop tarts really badly! At speech we worked on sounds, body parts, greetings.


I can imagine what the scene must have been like when Nikko saw the empty cracker box. He probably brought it to a teacher and signed Cracker or More. When he didn't get anything, he probably threw a fit or a tantrum or raced up and down the aisles. I can only assume that it was ugly. This morning Ronin was awake when I came in around 7a and that surprised me because he went to bed all sickly and lethargic. He remained that way in the morning only, and I put him on the couch to watch Cars. Nikko also watched Cars this morning, and wouldn't let go of one of the McQueen cars. Unfortunately, he took it with him to school despite my trying to trade it for his burp cloth or just to take it away. I thought he might lose it at school, but luckily he came home with it in his hand. I wonder if he wouldn't surrender it at school either. Sad school day, indeed.

Nikko got cranky after lunch, around 2:40p, wanting something else to eat, wanting the McQueen that Ronin was holding, and then ultimately wanting his burp cloth. I was getting irritated at him, and then checked on him in the living room to see that he fell asleep. I always feed bad after getting irritated at him, because his crankiness usually precedes a nap. Not always, but sometimes. Nikko woke up two hours later and wasn't in a bad mood at all. That led to a decent dinner for him and a happy medium mood for the rest of the night.

Monday, November 9, 2009

PECS meeting / Ronin, PLEASE??

Today was our house meeting with Linda H., Kathy and Margie (Nikko's teachers) regarding PECS pictures and how to get a picture schedule set up for the home. We sat in the living room and they pulled out little 2x2 pictures with velcro circles on the back. These were the 6 foods that I picked out that Nikko really enjoys: Peaches, Cookies, Popcorn, Cereal, Juice and Crackers. They put Cereal and Crackers on the floor in front of Nikko and asked him which one he wanted. Nikko stared at the squares and did nothing. Then Linda brought out the box of crackers and showed it to Nikko. He reached for it, but Linda put the picture next to the cracker and told him to take the picture. Margie helped Nikko pick it up, and then helped Nikko put it in Linda's outstretched hand. When he did that, Linda immediately gave him a cracker. We repeated this a few times until Nikko was able to pick up the picture of the cracker and hand it to Linda, getting rewarded with a cracker. BINGO! For Nikko to master this task in a few minutes was just awesome. I know he may forget it tomorrow and I'll have to show him how to do it again, but he has the capacity to pick it up. That's awesome. They also showed me a long strip of laminated colored paper that had velcroed squares of pictures of winter clothing. This is the picture schedule. If I am going to dress Nikko to go outside, the squares of clothing would be ordered by how they go on. Socks would go on first; after the socks are on, Nikko is supposed to take the Socks picture off and put it away in a pocket on the back of the strip. Next is the Shoes picture. After Nikko puts on his shoes, then he's supposed to take off the Shoes picture and put it away. And that's how the schedule goes. They hadn't finalized all the pictures and the velcro, so Kathy said she'd probably put it in Nikko's backpack tomorrow for him to take home. Nikko will need a picture schedule for when he eats, plays, takes a bath, goes to the bathroom and sleeps. Linda asked if I wanted to practice PECS more with Nikko before getting in contact with someone named Maria to move forward with discreet trials, but I said let's go ahead and contact her. I hope Linda will give me her number tomorrow because she didn't leave me with anything today. I was so incredibly grateful that Nikko's teachers came to our house and sat with him, even though they'll see him tomorrow. "Do you guys do this with everyone?" I asked them. Kathy and Margie kind of looked at each other (they must be a well-synchronized team since they've worked with each other for the past few years) and said, "Well, everyone that needs it. And there are a lot of kids that need it!" I am so grateful that they took time to come over with Linda to show us stuff. Teachers are a godsend.

Nikko and Ronin had temperatures today, about the 99.4 range. Audrey had a 101.6 temp before lunch. They didn't seem sluggish throughout the day, but I had to force a nap on Ronin and Audrey in the afternoon. Nikko didn't fall asleep until 5pm, even though I tried to coax him into a sleepy state to get some rest. Around 8:20p when I was headed to the bathroom to give Audrey a bath, Ronin suddenly looked like a zombie and was resting on an ottoman. He had a glazed look on his face and I could see that the sickness was hitting him hard. We hurried to give him a bath after Audrey, and he could barely keep his eyes open during the prayers. I'll have to check on these kids before I go to bed. I hope that Nikko's temperature goes down by tomorrow morning.

I FORGOT to add this one extra tidbit today: Nikko pulled me to the living room and signed Fish. He wanted to watch Finding Nemo, but couldn't find the DVD covers (I put them in the bedroom as I was cleaning up last night for the PECS meeting). I put it on and both boys were enjoying watching it. I went to the kitchen to eat lunch. Then I heard the screams and the crying followed by the thunder of feet running toward me. Ronin was holding the toy Nemo fish and Nikko wanted it by force. Ronin didn't want to give it up. I tried to show Nikko other cars/trucks to distract him, but he just wanted Nemo. Ronin was not willing to give in. Finally I was on my knees in front of the TV and said, "Ronin, PLEASE, PLEASE, PLEASE will you let Nikko play with Nemo? Just for a little bit? PLEASE, PLEASE, PLEASE, PLEASE, PLEASE??" Know what? Ronin held out Nemo, walked over to Nikko, and gave it to him. Nikko took it and ran to the couch and I took Ronin into a big hug and gave him a big kiss, thanking him for being such a giving brother. [At that moment.] Ronin may never do that again, but maybe it was the PLEASEs that made him change his mind. I don't know. But I'm proud of Ronin for giving Nikko the Nemo.

Old, New, Red, Blue

A quick post...
During bedtime stories, Nikko sat in Denis' lap while Ronin crouched between us, reading a Disney Cars book called "Old, New, Red, Blue." Ronin has memorized the content of each page and reads it back to us in a very cute, squeaky voice. He was naming all the characters on a page while pointing to them. Suddenly I wondered, if Nikko could talk, would he sound like Ronin in a cute, squeaky voice? Then I wondered, what would Nikko's personality be like, if he didn't have autism? Would he be as friendly, funny and goofy as Ronin? Would Nikko be totally absorbed in Cars, pointing them out and naming them, playing with them and reciting the movie lines along with his toys? I got sad, sitting there, thinking about what Nikko would be like if he were normal, and I almost cried. Had to shake it off when we got to the page where Lightning McQueen is surrounded by tractors and Nikko starts covering his ears. But it's a nagging thought, and I feel like Nikko got robbed of his own self. :(

Sunday, November 8, 2009

River Trails photo shoot

Didn't post last night because I was up late revising a resume for a good friend. The only eventful thing we did on Friday was to go on an outing to Target. I hemmed and hawed about how to handle the three kids in the store and decided that two kids would go in the double stroller while one walked. Luckily, Nikko fell asleep on the way there and continued to sleep as I put him in the stroller. Ronin got to walk, even though I put him on the stroller handlebars to get him inside. I brought along my reusable orange Target bag because the basket at the bottom of the stroller has dilapidated mesh sides that wouldn't hold lots of items securely. I don't have a clip to attach the bag to the stroller, for some reason. The lady at the checkout counter praised me for being "green" and said I saved 5 cents today. I wanted to tell her that I would have brought an IKEA bag if I had one, because it's bigger, but I just smiled and told Ronin to get up off the floor.

Today our major goal was to meet up with Atz at the River Trails Nature Center so she could capture a picture (or a few pics) for our Christmas card. The weather today was ABSOLUTELY GORGEOUS, 20 degrees warmer than normal for early November. We were all in short sleeves! The place was busy with other families that decided to stroll the trails and march through the crunchy leafy floor. Nikko fell asleep on the way so we let him nap a bit longer while Ronin and Audrey were let loose to explore. Chinny had dropped Atz off and was so kind enough to stick around with us, helping to keep Ronin out of trouble while we tended to the other kids. Audrey was having a blast as she toddled through the leaves. Surprisingly, she didn't put many things in her mouth. I had to wake up Nikko so he could get his picture taken, so I went to the Pilot and unbuckled him. He wasn't crazy about being woken up early, and it showed in his scowl. Just as he was about to start whining, I pulled out a Dum Dum, one of many that he would eat along the trail. Instead of letting it sit in his mouth like many of the other lollipops I've seen him eat, he started taking bites and chomping them in half. My plan to preoccupy him with Dum Dums was short-lived. We walked past huge cages that held some local wildlife such as a skunk, a fox, a hawk and a bald eagle. Patrick Creen and his two daughters showed up to enjoy the weather with us, and Atz's family soon joined us as well. Atz was such a sport, running around us, bending every which way to try and capture a smile from the kids, or a little eye contact from Nikko. That was a rare thing! Nikko warmed up a little later in our excursion, especially after the outdoor pictures were done and we went inside the nature center. He enjoyed looking at one of the fish aquariums. In fact, he spent more time in front of that than in front of the turtle pond, which was the attraction he liked the last time we went there. I wonder if it was the Nemo effect. I made a mental footnote that we should consider getting an aquarium in the future, although I would not look forward to cleaning it unless I got one of those fish tank cleaners that cleaned the tank by itself, like in the Nemo movie. I might settle for an algae eater, but they don't eat everything. Nikko explored the activity room, running to the fish poles and trying one out for a minute. He didn't carry it around and get upset when we had to leave it, like last time. He stopped and worked the beads on a colorful metal bead table. I had pulled out a puzzle for him, but he flipped one or two pieces and took off again. We all ended up staying at River Trails until it closed at 4pm, which is a testament that we enjoyed the weather, the company, and the environment. Before we left, Atz gave me a bag of some toys that she found while cleaning her crawlspace: a toy car of McQueen, a toy car of Flo, a toy Nemo and a toy Dorie. They were all from McDonald's happy meals back in the day. Ronin loved carrying around Flo (and found Ramone at home later on to reunite the couple) and Nikko took an immediate attachment to Nemo and Dorie.

We had to make a Costco run after the Trails. I took Nikko inside with me because Ronin had fallen asleep and Audrey seemed to be fine watching TV. I had to change Nikko in the bathroom and for once he allowed me to lay him on the changing table. I realized that Nikko is a big kid and probably shouldn't be on the changing table anymore, but he had a messy #2 that I had to mop up. I should be thankful the table didn't break. :P Nikko stayed in the cart, banging Dorie against Nemo and making a grunting noise. I found one last Dum Dum and gave it to him in the checkout lane. He had depleted my supply for the day and I hoped he wouldn't ask for any more. We got home and had to give the kids a late snack, which affected their dinner, of course. Audrey got put down for a nap, and the rest of us were in the living room watching - - you guessed it - - Finding Nemo. I think I've watched it eight times in three days.

Friday, November 6, 2009

Learning independence

Nikko went to school dressed in a red, collared polo shirt for the picture retake day. He didn't take pictures the first time around because that was the day I took him to Marianjoy Rehab Hospital to see Dr. Keen. Nikko's lips have been really dry and I slathered aquaphor on them to moisten them. I also put mousse in his hair because he had a bit of bedhead going. When he came home, the progress report said he took a cute picture. I wonder what that means. Just getting him to look directly at the camera would make a good picture. I'm not betting on a smile, but it would be nice if there were one.

I had a schedule going because today was Audrey's 1 yr. well visit at the pediatrician and I opted to bring all the kids along. I packed the DVD player and the Cars movie, along with some Dum Dum lollipops, and that seemed to keep both boys at bay. When we arrived, I put Ronin and Audrey in the double stroller and had Nikko walk beside me. It was a big test, even though the distance from the car to the building was only about 100 feet away, because I wanted Nikko to independently walk without holding my hand. I didn't mind if he held onto the stroller. I couldn't hold his hand anyway since the stroller is heavy to push. Nikko did great, didn't stray from my side or dart away toward the busy street. Audrey had four shots and a finger prick for lead testing, so she's probably pretty sore. I have to keep an eye on her because one of the shots was the MMR shot, the one blamed for causing autism in so many kids. I think she'll be fine, but if there is any kind of regression in her behavior or eye contact, I think I'll have a heart attack.

Ronin fell asleep on the way home so I let Nikko and Audrey play in the leaves for just a little bit before taking everyone inside. It was snack time and Nikko was asking for a pancake again. As I served him, Ronin wanted some too but pancakes aren't safe for him. I offered him a safe waffle, same as what he had for breakfast, and that excited him greatly. No nap for Nikko today, so I hope he went to bed quickly. Denis didn't get home until after the boys' baths and during storytime, because he went to an RDI meeting held at the Elk Grove Village Library. Venus, the mom from the PEPS group and who I had run into at the Rec Plex, forwarded me an email through Kathy Winters regarding the RDI meeting (Relationship Development Intervention). Denis took notes and gave me his report upon returning, and from what I gathered from the meeting was that RDI was not going to cure autism, but was another way (like floortime) to work with Nikko, enhance his dynamic intellectuality by being a guide and encouraging him to experience things while challenging and supporting him. I'm sure that's the simplified explanation of RDI, but mine was also abbreviated. Denis felt that it was somewhat common sense teaching, and I agree along the lines that we probably won't totally invest in RDI but use the methodology in how we interact with Nikko. Every time we go out into the world and expose Nikko to a new place, a different event, and lots of people, it impacts him in ways I can't even see. At least that's the hope. Giving Nikko the chance to experience things will help stimulate his brain and hopefully give him insight on how to solve problems. Helping kids with autism lead a better life in the future - improve the quality of life for them, I believe was the saying - is supposed to be the goal of RDI. I also believe that it's my job as a mom to help my kids lead a fantastic life, so whatever I can do, or should do, to enrich their life experience, I should do. OK, that sounds very optimistic... let me remember that when I'm having a tirade about something stupid. Shame on me!

Wednesday, November 4, 2009

Pancake / 3 that give me chills

Nikko was in a good mood today. He started the day with a blueberry pancake. Denis bought a bag of frozen blueberry pancakes from Wal-Mart to try on Nikko and he has taken to them, with sugar-free maple syrup. After lunch today, which he thankfully ate (chicken nuggets, mac cheese), he signed More Pancake to me. I was so impressed because I taught him the sign for Pancake only yesterday and he remembered it. Of course he did, it's a food item! Then during snack he signed Pancake again. I gave in to him today because I figure it's a food phase again that will hopefully peter out. He signed Pancake at dinner and I drew the line because I already had a plate out for him. He was a little insistent, but I didn't budge and he didn't keep going. Thank God. Unlike Ronin this evening, when we lifted him from the bathtub he caught sight of a little toy truck on the window sill that had been forgotten. Ronin cried, "Truck!" and became relentless because he wanted it so bad. I tried to explain that I had to get him dressed, that the truck needed a car wash, that it was broken, that he couldn't have it tonight (I didn't feel like getting it, washing it, and just dealing with it), but Ronin was in full scream mode and was causing me duress while I dressed him in pajamas. I hate feeling like I've lost the battle when it comes to these kids, but if I didn't march into the bathroom to retrieve the truck then Ronin would continue to cry and scream, preventing Audrey from remaining asleep and causing an unpleasant evening ritual for everyone. It was one of those times where it wasn't worth it for me to teach him that he can't always get what he wants... it's picking your battles again. Sometimes that phrase makes me throw my hands in the air because I seem to end up picking the harder battles when there's no other choice.

In Nikko's backpack Ms. Winters had given us a book called Sign Language, My First 100 Words. I was so grateful! It also has a sign chart for spelling the alphabet that I plan to put up on the wall somewhere we can see it. Mrs. I the OT wrote on the report that Nikko was a little resistive today, probably because she's changing up some things in his sensory diet. Otherwise, he did ok today. I'm in the process of transferring his preschool artwork into a big box. I keep up the current month's artwork on a bulletin board in the kitchen, but it's getting really cluttered so I have to purge the art.

After Ronin woke up from his nap I gathered my courage and plopped the boys in front of the computer with a Real Trains DVD so I could give them a haircut. I gave them each a Dum Dum lollipop and put Audrey in her high chair with veggie sticks. That was key, because I can't cut their hair while she's mobile. I didn't buzz their heads since it's the winter. I decided to try a little length on top. I also needed to accomplish this because Nikko has class picture retakes on Thursday. Unfortunately, my techniques didn't work as well as in the past. Nikko was resistive to the clippers and he really didn't like the buzzing near his ears. Using the scissors around his ears was precarious because he kept jerking his head away. I don't think I gave him a very good haircut, so I'll probably mousse up his hair on Thursday to look presentable. Ronin was also a challenge because his hair is so thin. I did a choppy job on his hair, but it looks like it has a little style in it. Not great, but I tried. It was too cold today to take the kids outside so we pretty much stayed in. Nikko had woken up really early today, maybe even around 6:30a just babbling to himself in bed without waking up Ronin, so I expected him to be tired. I couldn't get him to take a nap until 5pm when he finally tuckered out on the couch next to me while watching TV. He slept until 6:30, where I had to wake him up for dinner. After dinner he was racing two cars on the edge of the kitchen table when he cut the outside of his hand on a binder. It bled a little, and he refused to wear a band aid. We couldn't do anything except put some neosporin on it and let him air it out on his own terms. Bedtime was smooth for Nikko, who seemed to fall silent while Ronin was having his truck tantrum.

I was reading a friend's post on his nephew with autism and the three things the nephew did made me freeze and picture Nikko doing the same things: head tics, throwing things up in the air, and auditory sensitivity. Nikko seemed to not put his hands over his ears much in the few weeks before Halloween, but a week before Audrey's birthday I saw him do it again more often. He's been covering his ears when I am talking a lot to someone in the same room, and during the bedtime stories when Denis reads a few phrases from a Disney Cars book. He seems to tolerate the short, two-word phrases, but the last two pages have four lines of words and he's always covered up by then. Nikko covers his ears during parts of Finding Nemo. I'll have to watch him to see what parts they are, because there are practically no songs in that movie whereas Cars has some songs that he covers up to.

Throwing things in the air... that's a weird one, but remember my post about the lump on my head thanks to a car? Nikko must like the feeling of the weight leaving his hands. But to see the object in the air long enough to stim on it probably isn't the right option since sometimes he throws things right above his head or behind his head. He used to throw my set of bean bags up and over his head. (I'm still missing the red bean bag. It's probably behind the TV out of reach. Grrrrr.) Other things would be some juggling balls, the plastic tent balls, his burp cloth, random plastic toys, sometimes plastic food, and then that cursed metal car. It's a habit that will come and go, and sometimes is accompanied by that out-of-control-laughing-at-nothing-in-particular behavior.

Head tics are the saddest thing I see in Nikko, next to his eye stims. Nikko will start darting back and forth, jerking his body or just his head, throwing himself onto the side of the couch or even on the floor. It looks like what could be half a seizure that lasts anywhere from a minute to many minutes if I don't come interrupt him and lead him to something else. Sometimes Nikko is sitting holding his burp cloth and then he'll start shaking his head back and forth. If I see the whites of his eyes as he looks like he's peering from the corner of his eyes then I'll physically hold his head in my hands and stop him or stroke his cheeks and redirect him. He looks like he's drowning in his own world when he does that, and if he did that in public then I'm sure people would think something is wrong with him. I fear the future when that happens.

Tuesday, November 3, 2009

Nemo 3x's

The boys woke up around 7:45a today so our schedules were a tad off. Audrey slept in til 9a, probably because her stuffy nose kept waking her up so late into the night. It felt like I was constantly trying to give the boys 1st and 2nd breakfasts again, starting with cereal, then pancake for Nikko, oatmeal for both of them, then my sausage muffin to Nikko and Audrey. Once I set them free into the living room I had to change diapers after their morning expenditures. Normally around 10a I try to end up in the living room to chill out or nap if the night before was rough, but today I looked around and decided to make mac cheese for Nikko and Audrey, and a fish soup that she could possibly eat later (she didn't). My morning was rather productive, but I had to put Finding Nemo into the DVD player because Nikko brought it up to me and dragged me to the living room. Lunch suddenly came upon us and it went smoothly. Naptimes for Audrey and Ronin soon followed, and I had to play Nemo again for Nikko to keep him from getting bored. There was a point in the afternoon where I stopped trying to do dishes so I could interact with Nikko. I took out some flashcard dominoes and tried to peak his interest by lining them up, but he wanted to look outside. I tried to build with block with him but again, he just wanted to talk aloud and stay by the window. The kids woke up and it was snacktime for everyone. Poor Audrey's nose was like a waterfall, and it's probably red and sore from my vigorous wiping. She hates it. Ronin seems to have gone back to normal, no lethargy, but his cough still triggers potential throw-up scenarios (as evidenced later in the evening). Denis came home early, but told me he has to go to work really early tomorrow so it would be early bed for him. Nikko was getting really cranky later in the day, lacking a nap, so I had to put Nemo in a 3rd time, where he got comfortable on my legs and fell asleep for a nice hour nap.

I emailed back with Linda H. regarding the PECS stuff and she mentioned that I should pick out the top six food items from the list I submitted to the teachers so that we could start working on them, setting up a home visit to model the PECS process. That's the next step. It's also to see what foundation skills Nikko has, to see if he can correlate the picture with the item. That's something he was lacking over the summer, but the skill was emerging, and I think preschool is helping in that arena thanks to Kathy and Margie. Wow. Do these teachers have the time to come to my house after school is done for the day, just to help set me up with PECS pictures? If so, I'm really, really grateful. I have to look up this website to see what it's all about, it's the one Linda belongs to: www.nsseo.org (Northwest Suburban Special Education Organization).

Sunday, November 1, 2009

Flu shot / Leaf piles

Two things on the agenda today were flu shots and Halloween. I feel like I spent the morning feeding these kids 1st and 2nd breakfasts, then changing diapers one after the other. Nikko and Audrey's flu shot was at 2:50 so I was trying to work backwards in my head when I should get the kids changed, socks & shoes, then loaded into the car. I think it's cutting things close if I leave 15 minutes for diaper changes for three kids; 20 minutes might work out better. 10 to put on socks, shoes, coats and final diaper/food bag checks, then 10 to lift and load up three kids. That's 40 minutes before my departure time. That's realistic. 2pm rolled around before I knew it so I felt like I was rushing to change the kids and throw them in the car. Denis was going to meet me @ the ped's office, and luckily Ronin fell asleep in the car. Denis sat with Ronin while I took Audrey and Nikko into the office. Audrey was not crazy about getting her temp taken, but she wasn't the problem. Nikko has not had a successful attempt at taking his temperature orally, so we had to do it rectally. Nikko was yelling and squirming on the table while I tried to hold him down and grip a leg while the nurse had the thermometer. The first attempt wasn't good, so another nurse came to hold the crying Audrey and give Nikko a lollipop as a distraction. He gripped it tightly but didn't stop squirming, crying or yelling. The dude is strong and I couldn't find an ideal position to pin him down except to crush his upper body with my weight and hold that leg in so he wouldn't kick the nurse. There was finally success when that thermometer beeped. I guess I'll have to work on getting Nikko used to taking his temperature. Sure wish he had some ABA to learn this! When the flu shot was administered, I had him sitting facing outward in my lap and I gripped his left arm pulling it across his body while gripping the right arm in the same way. The shot was fast, thank God. He managed to hang onto this red lollipop for the rest of the day and well until dinnertime. I'll be watching Nikko to see if he reacts to the flu shot.

When we got home, Ronin had woken up from a nap and seemed in a good mood. I thought this was a good opportunity to play outside since the weather was mildly cold, too cold for Audrey to sit out and play because she has a little temperature to match her hacking cough. Ronin's cough wasn't as bad, so I hope I didn't push his envelope by letting him play outside. Audrey was indoors with Denis, taking a nap. I pulled out the rake and started making a pile of leaves on the front lawn. Nikko was thrilled and started tromping through the pile. Ronin followed suit. Each boy was carrying a lollipop, and either brushed off leaf debris as it fell on it or somehow managed to lick off any leaf scrapings. EEEEWWWW. It was still daylight and many people were out trick-or-treating. I thought about putting the boys in costumes, but decided that it was just easier this year to make leaf piles and have the boys run around the front yard, laughing and jumping and plowing through the leaves. Ronin can't eat any of the candy he would have collected, and we don't want Nikko to start eating straight-up chocolate by the handful. There will be many other opportunities like that coming in his lifetime, and we have almost-daily challenges regarding him eating things like cookies and other sweets that he really doesn't need. Audrey was sick, too, so it was for the best that we were closer to home. I had a really nice time just having some laughs with the boys, making them giggle when I showered them with leaves from the rake, and just being around them in a normal outdoor setting. When it was time to go inside they didn't fight me about it very much. Nikko didn't want to relinquish his lollipop so I ran it under water to clean it off. Ronin seemed content from the leaf outing, but I hope I didn't tax his breathing. I'll find out in the morning.