Saturday, October 31, 2009

Nikko in costume

Nikko was agreeable this morning when I put on his ninja turtle costume on. However, he was getting annoyed with one sleeve and pulling at it so I had to put on his fleece jacket over it before he tore it off. At the bus stop the twins were dressed for the occasion; the girl was a ladybug and the boy was a shark. Very cute! When I got Nikko later, he had a bag full of non-sweet treats, including some Play-Doh (I gave the teachers a bunch to give away, Nikko got some back), stickers, pencils, a plastic slinky, $1 gift certificates to Wendy's and McD's, and coloring books. Very good ideas. The twins' mom had went to the school to videotape her kids in the Halloween parade and she showed me the video, which captured my Nikko walking in the gym as well. She didn't know when her kids would appear so she taped any kids walking in. Nikko was the last in line, Mrs. Napoleon walking next to him, and he had his hands covering his ears the entire time. I guess there was music playing and it was probably nice and loud. Later in the evening Atz would tell me her story of her experience seeing her daughter's school costume parade. She noticed that the special needs kids walked in last, she saw the kids in wheelchairs, then the other kids like the ones with autism, and they had their hands covering their ears, too. Kinda funny that it seemed to be a trademark, and that my own Nikko did that as well.

Nikko didn't show much interest in eating nuggets and grapes again, so in desperation I put in a cheese pizza. Bingo! He ate 3 slices and signed More Pizza each time, with a smile. I geared up our belongings so that we could head over to mom's house in the mid-afternoon, but spent perhaps 15 or 20 minutes putting in Audrey's convertible car seat between Nikko and Ronin. When I put her in and turned to face her from the driver's seat, she looked at me with a huge grin as if to say, "HEY, this is what it looks like riding face-forward!" The boys ended up napping first, then Audrey soon followed. At mom's house, the boys played with the cache of cars I brought as well as watched a bit of TV when there weren't any Filipino soap operas on the screen. The sibs soon came with their kids, and I put the costumes on the kids so everyone could see each other. Nikko wore his costume again comfortably, but wouldn't wear the "shell" cape or the mask, just as I anticipated. Ronin refused to wear the Superman cape. Audrey was the only one game, wearing a pig costume borrowed from Anna. Nikko didn't seem overly excited or frazzled when all the kids showed up and were milling about. He seemed to flow between everyone. I was also able to go from one room to another without him looking for me, but he was clingy on his own terms. Dinner went smoothly for Nikko. He ate Lou Malnati's cheese pizza, sitting next to me. He didn't go too crazy on the cake, and when I was giving the Penepacker girls Halloween candy I had brought some Dum Dum lollipops for my boys. That kept Nikko from looking for something else to chow down. We got home later than usual, but probably a normal time for a Friday night family outing. Tomorrow we have flu shots on the agenda in the mid-afternoon, then we'll go home and assess the trick-or-treating situation. Ronin and Audrey had developed some hacking coughs today, but didn't have any temps or fevers. I'm keeping an eye on it, because it could develop into something nasty. Audrey had some slightly drippy nose today, but that could have been her residual tired cries and tears. Ronin's cough has me worried, as usual, so I'll see where we go with him.

I'm writing down words from our daily routine that Linda Hoeck will be able to laminate for PECS and for a picture schedule. I have a few from before, but I think starting from scratch will be fine with me. I should email this list to them before Monday morning.

Thursday, October 29, 2009

Meeting Linda H. / Fire Truck / SL Class - a long post!

Today was our 2:45p meeting with the teachers and the autsim coordinator. I got the kids in the car, waited for a train, and then threw the little ones in the double stroller as we walked quickly up to the school. Nikko walked beside the stroller; I couldn't hold his hand and since he was familiar with school I figured it might be awkward if I made him sit in the stroller. We sat for a meeting with Linda Hoeck, Ms. Winters, Mrs. McCarthy and Mrs. I. Linda was really informative and impressed that Nikko is able to imitate better and generalize what he learns. For example, he learned the word GO and used it in different activities that day such as the toy school bus, running down the hall and the scooterboard. If he didn't generalize well or at all, he would have learned the word GO and only used it when prompted with the school bus, wouldn't use it at other times or in other situations. Instead of jumping forward and putting us in touch with ABA service providers, the teachers, Linda and I discussed Nikko's capabilities regarding imitation and ability to use picture schedules and PECS (Picture Exchange Communication System) pictures. He is learning how to make choices in Speech Therapy and can learn a sign rather quickly, especially if it is food motivated. We decided that he needs to get really comfortable with exposure to the First/Then concept, as well as requesting things via PECS picture, before making the move to start ABA therapy. He's a good candidate for it, she said when I asked, because he can follow directions and can generalize. They are going to make more pictures for me, come to the house and teach me how to use pictures in our daily routine, and then Linda will work with me to set up ABA help. From what I understood, and will probably be explained again, a program is developed for what we want Nikko to accomplish, or behave a certain way, or pay more attention. Then, college kids or adults are brought into our home to work with Nikko on these skills. I guess the people rotate, it's not always the same person, but maybe they will have nerves of steel to work with Nikko. Linda mentioned a figure around $12/hr for some people, so we'll have to see how this would fit into a budget. Linda said we could try it for a few hours during the week, then see how he progresses after say a month, knowing we aren't completely "locked in" to the services if we so choose.

Something else to note: I asked a surprising question that I think caught the OT off guard a little bit. I asked them, "What does Nikko do in the playground?" Just about every day they go outside for a short recess. I've read on a few autism forums that some kids are left to their own devices and end up stimming by themselves instead of interacting with others. I wondered if this was happening to Nikko, so I asked. Ms. Winters and Mrs. McCarthy honestly couldn't tell me because I think they don't go outside for recess, that someone else takes the class. Mrs. I the OT shifted a bit uncomfortably, didn't look at me directly, but admitted aloud that Nikko tends to run back and forth on the wobbly bridge, part of the climbing apparatus. She said that she has seen the other aide help Nikko to engage in the past, but he does tend to run back and forth when outside. I didn't criticize anyone at that point, since this wasn't a parent-teacher conference meeting, but I will bring it up again later in the hopes that maybe Mrs. I will now keep an eye out for Nikko and hopefully tell the other aides to get Nikko more active with his peers or on different playground equipment so he doesn't get stuck in a rut. Granted, the wobbly bridge is in the middle of a lot of activity so he's probably surrounded by all the kids as he runs back and forth, but that doesn't mean he's engaging with them in any communication or interactive play. Hard to do for Nikko regardless, but still something that should be worked on. I learned this from reading the autism boards. Thank goodness for those!

During the entire meeting, Ronin went to play with the vast array of toys in the schoolroom. Audrey clung to my leg and managed to venture around Ronin for a short while, and Nikko was trying to climb into my lap, fighting Audrey away. I think I looked a bit harried to the teachers, but hey, that's my real life. After the meeting, while wheeling Ronin & Audrey back to the car while Nikko walked, Ronin started getting upset because we were leaving the Fire Truck behind. This escalated in the car and did NOT get better. He was screaming for the Fire Truck. I tried to explain to him that it was the school's Fire Truck. We don't have one. We don't own it. It has to stay at school. If he's good, then tomorrow we'll find a nice Fire Truck for him. Well, OH MY GOD, nothing was placating this boy. Very reminiscent of the fire truck incident with Pete the Speech Therapist where Ronin was unrelenting and would not stop crying/screaming/demanding for it. Ronin started coughing and heaving, but he didn't have much to throw up, only foamy spit this time around. I tried to ignore him and remain calm, but his constant crying and screaming blew up the anxious bubble in my throat and I was screaming at the top of my lungs for him to stop asking for the Fire Truck. He didn't stop, just continued at his relentless pace. My throat was so hoarse and I got a headache. I put Audrey down to nap and forced a snack upon the boys since we'd have to go back to school in two hours for the Sign Language class. Ronin finally did stop to eat Veggie Sticks, thank goodness, but my temper had flared up so high that everything was annoying me. They made noise with the pumpkin pails I bought. Nikko started turning on and off the living room lights and I was furious that the boys were fighting at top volume while Audrey was napping. They woke her up. I was so livid. While I was feeding her peaches, the boys wanted peaches and I didn't want to feed them any more because they just had lots of snack stuff. I stood in front of Audrey's high chair and started heaving sobs, then started wailing that none of my kids listened to me, why did they treat me like crap, why why why, all that stuff. Ronin noted my tears and said, "Mommy. Sad. Cry." I sniffed and agreed. Then he ran off. That's the extent of his empathy.

I rushed to get us out the door to the Sign Language meeting. Denis met us there. It was in the Library/Learning Center of the school. I was looking forward to having fun and learning some signs. That SO did not happen. There were quite a few parents and kids in attendance, including Sophie and her folks, plus two other moms I saw from the first PEPS meeting. Nikko would not sit still in his green cube chair. Ms. Winters was singing the songs using signs and being very outgoing, which was great. Mrs. McCarthy was taking pictures and acting as a human barricade to Nikko. I was wrestling with a very active Audrey, who was loving a little platform ramp and was toddling around the chairs happily. She kept climbing into Nikko's green cube chair, gripping the back of it, and almost falling head over the side of it. Mrs. McCarthy caught her once. *phew!* Ronin was a big handful. He saw another kid that brought a Lightning McQueen and a The King car so he kept trying to grab those. Denis tried to let him play in the back of the room but he wanted to climb up some stairs. Nope. Then he seemed to remember that the Fire Truck was in this building so that was on his mind. There was one point when Ronin sat down and was somewhat interactive with the songs, but when Ms. Winters signed COOKIE I cringed inside because that was a death wish for us. Ronin immediately turned to me signing Cookie and saying it loudly. Nikko, who was in my lap, also signed Cookie furiously and got up to look for the food bag. Ms. Winters was signing CHOCOLATE COOKIE and Ronin was having a fit because that's what he wanted. Can I just say UGH!!! We left at the end, with handouts, and I was mentally and physically exhausted from the school afternoon. Dinner at home was late because everything was late tonight. Nikko had no appetite for nuggets and grapes, but wanted handfuls of Cheerios with his juice. WHY?? Ronin was hungry, and was whining about the Fire Truck, then he wanted rice. Unfortunately he got into a coughing spell and threw up most of his dinner. GREEEAAAAT. The only saving grace for the evening was that Nikko pulled my hand into the living room and signed MORE. "More what, Nikko? What does Nikko want?" He signed MORE TICKLE. I happily gave him tickles and he laughed and laughed. Ronin joined us and I tickled him, too. Audrey threw herself into the pile and I tickled her, but only a little bit because I didn't want her crushed in the melee. Denis came in and hung out with the boys while I went to give Audrey a bath. Bedtime didn't come soon enough. I've got a huge pile of kid laundry in, have to run the dishwasher, wash the floors, then try to catch up on papers or the autism forums. Tomorrow is Nikko's Halloween party at school. We're not going to the Halloween Hoopla in his classroom because after today's outings, I would not be able to handle the little ones in a hectic environment, along with Nikko crawling all over me. I'll miss seeing him in action, but the teachers will have to care for him this time around. Maybe next year.


I got a quick note from Ms. Winters the ST/Teacher today:
Nikko approximates Pretzel by putting one forefinger on top of fingernail of other forefinger. He picked it up so quickly - - food is very motivating. :)

It's a good thing she told me this sign because when we got home Nikko was signing for some pretzels. I told him we didn't have any, unfortunately. I think that's an ok snack that I should get for next time. Today his appetite really wasn't good during mealtimes. He didn't have a great breakfast at all so I wonder if he was really hungry during snack time. He was signing for crackers and I didn't want to give him any unless he ate his nuggets, but I did try putting some crackers in my chili and was able to sneak in a few beans to him while he ate it from my bowl. He didn't have any problems during snack time, of course, where he signed Popcorn (for corn puffs). I think he saw the sign Popcorn on the Signing Time DVD, which is why he kept trying to pull me into the kitchen. Denis came home early from work so I had him put Audrey down for a nap and took the boys to Costco with me so they could get out of the house. Ronin had a 1.5 hour nap and woke up so grumpy, but I rushed his snack so we could go to Costco. Nikko didn't nap, and I knew he would fall asleep in the car at some point. The shopping trip was fast, but I still had to give the boys some crackers because Nikko was pulling at the food bag. He fell asleep on the way home and I was able to carry him into the house and lay him on the couch, even though Audrey had woken up and was screaming for me while Denis carried her. At 6pm I said good bye to the crew and went out to dinner with two girlfriends for some much-needed bonding and support. When I came home later, Denis said that Nikko woke up really angry from his nap and wasn't very agreeable for the rest of the evening. He was probably pissed that I wasn't there.

Tomorrow is a big meeting day for us. First, Ronin has speech therapy in the morning (I have to straighten up the living room for sure). After Nikko comes home from school, I'll serve lunch and possibly put Ronin down for a nap. At 2:30 we all have to leave for Nikko's meeting with his teachers and the school autism coordinator. We'll go home, and then come back to school at 6:30pm for the Sign Language night. I just have to stay on top of getting the kids out the door on time because I don't want to be late for anything.

Wednesday, October 28, 2009

Audrey's Birthday

Nikko didn't seem to have much of an appetite during breakfast, or for the last three days for that matter. He goes in spurts where he'll eat all the nuggets on his plate, plus grapes, or eat lots of bread and butter, but then the following meal will be scant. I tried pushing it this evening, but of course it didn't make him eat more. He went off to preschool without his siblings in tow because we've had some late mornings over the weekend and I am trying to get us back on schedule.

Mrs. I, the OT, wrote this on the progress report:
Continuing to facilitate Nikko staying engaged with more heavy work activities to improve body awareness and participation. Activities are trampoline, wheelbarrel walk, crawling and swing. At table work, Nikko is doing nicely with his bead stringing and looking at boundaries for dot art.

Those are very good things! I wonder if having a trampoline at home helps, or doesn't help him at OT.

We had lunch, and then pretty much got ready to go to mom's house to have lunch over there in honor of Audrey's 1st birthday. When I put on Nikko's socks and slip on his shoes, he bends over to help push the velcro over his feet. Doesn't initiate putting on his jacket, but does slip his arms in the holes when I hold it open for him. Lately he's been pretty patient while I dress him up, then put him aside to finish Ronin and Audrey's outerwear. He fell asleep on the way to mom's house and woke up when we got there. For some reason, he wasn't in the easiest of moods when we got out of the car. He stood by the Pilot and didn't take any steps forward when I called to him. I had to lead him to the house. Inside, he sat on the couch with his hands over his ears again. He didn't seem to warm up to anyone for a while. His appetite wasn't there, either, although he did finish his lunch at home. When we sang Happy Birthday to Audrey, he covered his ears and gave a loud protest again, so Atz immediately took the song down to a hushed volume. It was kind of funny to sing happy birthday so hush-hush! He was very interested in the Clown Cake and concentrated on the icing. (NOTE: What is Clown Cake? In the Alog household, for every birthday my mom would make a German Chocolate Cherry Cake, top it with a homemade chocolate icing, and put little colored ball sprinkles on top. We used candles, but she always put the head of a clown in the center of the cake. Now the head is lost, but the cake retained its name.)

We came home and I put Nemo in the DVD player. I had wanted to make a trip to Costco on the way home, but Ronin and Audrey were sleeping so I decided to save the outing for Wednesday. At home, we were chilling out before dinner time. Lately, Nikko and Ronin have been fighting mercilessly over toys and I've had to play the referee. After dinner, they were fighting over a cloth toy barn with little animals that Audrey got for her birthday. Ronin had the barn, but Nikko wanted to play with it. Ronin ran around the living room, screaming in a very high-pitched voice, with Nikko crying and lunging at him for the barn. It got really ugly a few times, and I had to intervene by holding Nikko back. Finally I switched my stance and held Ronin back while Nikko played with it. Ronin was screaming bloody murder, but I knew that Nikko would play with it for a few minutes and then lose interest. I just had to wait for that to happen. Sure enough, he was watching TV and lost interest so Denis slipped it away and gave it to screamer-boy. It's times like that where I want to scream my own head off, but luckily we weathered the storm. Audrey was put to bed at 8:45, the time she was born a year ago.

Monday, October 26, 2009

Mom sits the boys

Mom came over and I put the Disney Cars DVD in the player. When Nikko ran into the kitchen and saw her, he started crying because he knew I would be leaving somewhere. It was Ronin that needed to be picked up in protest, while Nikko stood next to Mom crying. Audrey's skin test was negative to food allergies and any others they tried on her. That's one less thing to worry about now, and I'm glad we did it. No surprise visits to the ER for me, please! When we got back, the boys were very happy to see me. Mom told me that there was almost no more crying from Nikko because he ran back to watch Cars. There were also no naps to be had by the boys, so I put Ronin down for a nap around 5pm because I don't think he would survive until 9pm. Nikko didn't fall asleep at all, so I hope he tuckered out when it was lights out. He had another round of shaking it out today, so I wonder if it maybe wasn't the Red 40 affecting him. Maybe it's just HIM.

Shaking it out / Leaves

Another relatively quiet day at home. Denis took Ronin to Costco this morning, and I was able to sit with Audrey and Nikko in the living room. They both wanted to be on my lap, but I would lie down on the living room floor and each would find a spot to settle on me; Nikko put his head on my tummy and Audrey lay on the same floor pillow with her head touching my head while we watched The Wiggles. Nikko must have forgotten about the Jell-O because he didn't make a beeline to the fridge for it. I was reminded by a friend that the red dye in Jell-O and many other products isn't good for autistic kids. I've also read on some forums that Red 40 can drive the kids batty. I'm not sure if today's behavior was a reflection of that, because during our two-kid peace time today Nikko started doing some crashing and shaking his head and arms in an uncontrollable way. It wasn't a stim action, but it was one of those actions that are probably related to flapping arms and running in circles that is characteristic of autistic kids. I tried to give Nikko big hugs and give deep pressure strokes, but it really didn't stop his odd behavior to my chagrin. I had to keep Audrey out of his path and let him shake it out.

Later in the afternoon, after Ronin woke up from his nap and after a brief snacktime, we dressed the kids to go outside. It was drizzling but Denis needed to rake the leaves because curbside pickup is tomorrow. The boys went out first while I got Audrey dressed. When I came outside carrying her, I saw a big pile of wet leaves in front of the garage and both Ronin and Nikko running back and forth through it. I gulped thinking about the dirty, wet pile, but resigned myself to the fact that we'd strip them when they came inside. I helped Denis rake (I had to use a shovel because he broke the 2nd rake) and the boys hovered around us. Ronin took an interest in a rubber-tipped shovel that he could manage and was pushing leaves here and there. Nikko was interested in the pile itself and walked purposefully through it. Denis remarked that he was happy to see Nikko running in the leaves, looking like a normal kid. We moved the pile to the curb via tarp, and it was difficult keeping the boys from going into the leaves that were now on the street. Ronin understood to keep off the street and stand only on the curb, but Nikko was harder to contain. He was obviously excited about the whole thing. Dinnertime was on the horizon so everyone was carted inside, wet but content. Nikko didn't have much of an appetite during dinner and that puzzled me. Otherwise, he was fine after dinner and enjoyed tickle games with me. He didn't take a nap all day, unfortunately, so I think he was ready to go to sleep at bedtime. Tomorrow Audrey has an allergy appointment in Hoffman Estates so Mom is coming to sit with the kids in the afternoon. I'm sure there will be tears and protests, but I hope they will be short-lived from the boys. They love Mom, so hopefully the transition will be short. I'll make sure to put in Nemo for them, or maybe Cars. I'll show Mom how to repeat the disc if it ends.

Sunday, October 25, 2009


We didn't accomplish anything I expected to today, but what did happen was that my sister Atz, her husband Dennis and their older girl Rory came over with their dog Grant to have a playdate with our dog Lego. Dennis was being outnumbered by all the estrogen in his family about taking in Lego, especially now that Ronin tested positive for dog allergies. Lego and Grant got along; Grant was furiously trying to get Lego to play with him, and Lego looked mildly irritated as if Grant was a fly. But except for the initial baring of teeth and barking, the two seemed to be able to coexist. We took Nikko outside with us while the dogs circled the backyard. Nikko was getting agitated with me for not playing with him, or for standing off to the side while he was trying to get my attention. I was blocking a gap in the fence so that Lego wouldn't run out of our backyard. When I finally did move around with Nikko, he started pushing me around as if he wanted me to walk in a specific direction but he didn't know where. I was mildly irritated at Nikko because he started pushing Atz around. I thought she was standing in his imaginary pathway, but when she got out of the way and he still pushed her I started reprimanding him and telling him to be nice. Nikko is starting to exert more physicality on the people around him, and of course I worry about that in respect to Ronin and Audrey.

During snack time I gave the kids Jell-O. I even signed "J-O" for Nikko so he could learn a sign for it. The bad part is that he liked forking it into his mouth so much that he wanted more. And more. This manifested itself into a big tantrum when it came time for dinner. He saw it in the glass cake pan in the fridge, so he knew where it was and how to sign for it. I didn't want him to eat it for dinner, rather after dinner would be better. But he started acting up and whining for it, pushing me around and getting me angry. I had a plate of nuggets and ravioli pasta for him, and decided to put some Jell-O on the plate too so that he could have a little, but still eat the other things. It was a big point of debate because it looked like I was giving to him every time he tantrumed for something. I saw it as giving him a little, but still putting out the other foods so that he would eat more than just the Jell-O. I think both ways were flawed, but I am at my wits end trying to figure out the best way to handle Nikko in this kind of situation, where he acts up and acts out over something he really wants but shouldn't have at that time. At Nikko's preschool, when I asked if they ever put kids in timeout they said no, they use distraction instead. Well, dinnertime ended up in a distraction to get Nikko to stop asking for Jell-O. I had to make him some organic mac & cheese, which is something he likes, in order to replace the Jell-O craving. It worked, but I'm sure he'll be looking for Jell-O tomorrow and a battle will ensue again. This is similar to his wanting of cookies. It's a hard battle to fight with him, and I'm trying to figure out how to make a learning experience from it. Is it simply better to tell him NO when he wants something he can't have and then ignore him? I've been acknowledging that he wants something and tell him he can't have it now, but he can have it later. I don't think he understands the concept of "later", so how is my explaining it going to help him or teach him something? By ignoring him and not telling him NO seems rude to me, because he is trying to communicate a want and should be acknowledged for it, even if it is a NO. So once I say NO, is the best way to enforce it just to keep moving about my business, or keep explaining why it's NO?

Saturday, October 24, 2009

Waiting on the bus

This morning when I got on the bus to pick up Nikko, I saw him smile at me from the window and when I approached he was excited. I looked down and saw his shoes on the floor, his socked feet chillin' on the seat. I asked Mrs. Beyer why his shoes were on the floor and she said he got upset so he kicked them off. As I put them on and unclasped Nikko I asked her if Nikko got upset before he got on the bus (attributing it to something that happened in the school) or after he was on the bus. She said that after all the kids are boarded, sometimes they have to wait. If they wait for a while then Nikko starts getting agitated so she gives him his burp cloth.


So that's why on some days he'll be holding his burp cloth when he gets off the bus and other days it will be in his bag. Actually, I noticed that for the past two weeks or so he's been holding it when he gets off the bus. This is a very true observation of Nikko, that he gets impatient if things don't get rolling soon when he's on a vehicle. He gets that way in the Pilot, if he's not watching a DVD. Mrs. Beyer had to move Fiona, the little girl who sat next to him, because I think in his agitated state he was flailing his arms and she was in danger. The twins' mom remarked that this was probably a bad thing to do because if they remove everyone around Nikko when he acts up, then the kids will start to leave him alone and that would be bad for his socialization. The thought of it all makes me really sad. How can we work on Nikko's patience? It's kind of a complex pot. He seems really easygoing at home, watches tv a lot and doesn't seem demanding unless it's something that he really wants (cookie, corn pops, bread & butter). Well, it's a topic I'll have to revisit soon.

The Penepacker girls came over after lunch so that Rory could get some practice changing diapers because she's going to babysit some kids down the street. I was more than happy to hand over Audrey and Ronin for practice. Nikko, however, was in my care since he had a #2 and I didn't want to torture Rory. Nikko seemed happy to have their company and was doing the Nikko dance in the living room. Allie and Sabrina had a doll that Ronin seemed to take an interest in. It reminded me of the little dolls that Pete had used during therapy, where Ronin fed them a bottle and brushed their hair. The girls found another doll in the car and left it for us to borrow. Nikko looked at the doll curiously and put it up to his lips as if to kiss it. He's done that before with a little teddy bear that came with a happy meal. I put up the doll's hand for a high five and he responded in kind. But the doll interaction was short-lived and the doll was soon abandoned. I'll see if I can get the boys to play with it again over the weekend.

Our last activity was to go to the in-laws for dinner. I put in Finding Nemo on the way down, and thankfully Nikko fell asleep 15 minutes into the ride. He continued to sleep a little bit more after we arrived, but I had to wake him up to eat or he wouldn't fall asleep well later when we got home. He was very attached to me during the evening, but I left him in Denis' care when it came to dealing with dessert. Nikko was tantruming because he wanted more cake, but it was truly a lot of sugar and we had to put a limit to it. I think it made everyone uncomfortable to see/hear him tantrum so loud; I felt some uneasiness as if they didn't know what to say, because they didn't want him to keep crying. I decided it was better if we ushered Nikko out of the kitchen so that the temptation of cake wasn't in his face. He protested when I moved rooms, but it was for the best. Later in the evening I think Ronin and Nikko showed some interest in some plastic fruit my mother-in-law had on the dining room table. Denis told me that Nikko opened his mouth as if to eat the plastic grapes. Funny, but we'll have to get them some real fruit over the weekend.

Friday, October 23, 2009

Ronin's evals

Today was not supposed to be about Nikko; it was a double therapy day for Ronin. But Nikko and I were together for a lot of the day because I had to keep him away from the therapists. Luckily, Audrey went down for a nap during each session. It was during her waking hours that she was such a crab.

The OT arrived late due to rain and she lived in LaGrange. Ronin's eval went smoothly. He was apprehensive of her at first but soon became curious of her. He didn't like it when she handled him to move him from place to place, but Ronin showed his helpful side today and that made me happy. Result: normal-acting 2 yr old. DUH. Totally wasn't stimming as if he had a delay, and the transitioning is a behavioral problem, not a developmental one, and can be worked on. Nikko was curious about the OT's toys at first, and she let Nikko play with some blocks while I made sure Nikko wasn't being intrusive. But he kept coming back to my lap and was covering his ears the whole time. He even started putting his face in my face, to the point where he seemed to be trying to snuff me out while I was talking. I realized that maybe I was talking so much that he didn't want to hear ME talk anymore. Well, Nikko didn't have a choice except to lay in my lap and endure my voice. After the OT left we had lunch, and I put Ronin down for an earlier nap so it wouldn't conflict with his 3pm speech makeup session. Pete came over and I told him everything the OT told me, kindly. Nikko hadn't seen Pete for a few months so he was curious about Pete's toys. I had to distract Nikko, haul him away from them, and basically put Nikko in the kitchen with cookies, corn puffs, and finally watching the laptop with a Cars clip. Whereas the OT didn't mind if Nikko inspected her things, Pete was not as giving and took whatever Nikko tried to pick up. That was a signal to me that Pete preferred that Nikko leave the room. Grrr. Maybe Ronin would have said more phrases if he were interacting with Nikko; it's not like Pete was doing anything complicated to draw more words out of Ronin. Even after all the therapy today, Nikko didn't tire enough to take a nap. Therefore, he was sleepy at bedtime. He has school tomorrow and I think that will make him feel relieved. Nikko didn't seem to have a great appetite during his meals today or yesterday for that matter. At least not for chicken nuggets. He's eating grapes and peaches, however, so the fruit intake is great as long as I have some on hand. It's exhausting giving "complete" meals to three kids who have different dietary needs. :P

Wednesday, October 21, 2009

Rec Plexx adventure

Must have been a calm day at school because Kathy (speech teacher) wasn't there today. Still, his progress report looked productive. He did some apple star story, worked on a tissue paper apple, played outside and did an apple taste graph. Fall is definitely in the air. I expect to get more apple construction paper projects soon.

After lunch I rallied the troops together to go meet up with Jovy, Anna and Max at the Rec Plexx. The boys were very excited about it and I think Jovy was, too. They wore socks in the ball pit, but when Ronin got stuck in a side-ball pit because his feet were too slippery to scale the walls to get out, I had to crawl through the pit to take his socks off. Then I let him try to scale the walls on his own, which he did. Jovy was brave enough to climb up the multi-level nets to a really tall slide tunnel, and then the boys followed her. Ronin smartly used his hands and feet to slow down his speed in the tunnel. Nikko didn't anticipate the speed and looked a little scared when he came out, but I encouraged him to try it again and he did. Soon both boys mastered it and resumed crawling all over the apparatus.

A lady and her son came in the room and I recognized her to be Venus, the co-founder of the Parent Support group for District 57. Her son, Colin, is Nikko's classmate. She also has a 7 yr old son Aiden who is autistic. I acknowledged her and we had a nice conversation about our kids as well as the group. I told her about our observation with Linda Hoeck and she was supportive in our efforts to find outside services. Venus mentioned Aiden's social skills group at Half Dreams, which is something I should consider for Nikko in the future. Not sure at what age it would be helpful to him, but I'll keep it in mind. We also discussed how Blue Cross Blue Shield didn't cover anything for her either since her husband works for a bank, so everything is out of pocket for her. The speech therapy is partly covered. She also agreed that it takes a lot of effort to coordinate all the therapies. It was reassuring to talk to her, but I hope I didn't look too desperate for feedback. We snacked the kids in the outer rooms at the Rec Plexx, and as I anticipated, all kids fell asleep on the way home. They ran around a lot and had fun. Audrey was walking around and wasn't really supposed to go into the ball pit because she's so little and would get crushed if someone jumped on top of her, but when I had to rescue Ronin I did put her in the pit near Anna. Audrey seemed to like it, too. She is very physical and wants to rough and tumble with the boys if she's able. At home, she just started walking last week and this week she wants to jump on the trampoline like the boys. Sheesh!

Tomorrow Nikko doesn't have preschool due to some school-wide student improvement day. Ronin has an OT evaluation in the morning, and his speech therapy was moved to 3pm. It will be a challenge to have all the kids in the room with the therapists around, but they are probably used to that. I'll have to work hard to keep Audrey out of the mix.

Testing sans Oreos

Nikko came home from preschool in a good mood, but once we got inside and got settled before lunch he became really agitated with me. I signed that we should eat and he agreed, but he didn't seem happy with me while I heated up his mac cheese. He was flinging himself to the ground at my feet, and when I stood with his food waiting for him to sit down he flat out refused with a vengance. I had to set his food down and give him deep pressure strokes on his arms, legs and back. It didn't seem to calm him at first, and I don't know if it even helped this time around, but after sitting up between tantrums he regained his composure. I was able to encourage him to sit down and start eating. These tantrums are coming a lot more frequently. The bad thing is that I don't understand what he is trying to tell me when he has them. My success rate in meeting his need is probably 60/40.

Nikko's progress report from school looked ok. I think he has OT on Tuesdays, as Mrs. I wrote the following:

Continuing with heavy work and movement prep activities - wheelbarrel walk, trampoline, big ball work. Then worked at table with buttons, bead strining and dot art. Nikko really enjoys using the dot art markers.

I also got an email back saying the autism coordinator observed Nikko today and was impressed with his progress. She wants to meet on the 29th, the day of the sign language class. I said that would be fine as long as I could take the kids, since Denis is at work. It's fine with them. I'm looking forward to this meeting, it's gonna have a lot of stuff going on!

We went to mom's house this afternoon. Nikko fell asleep in the car and continued to sleep on mom's couch when I brought him inside. He must have been super tired! He woke up later and unfortunately acted as if he didn't like his surroundings. He kept covering his ears again. After mom's house I had to take everyone to Costco for chicken nuggets. We were totally out! This time I didn't take along the Oreos because I didn't want to reward Nikko for crying for them. He looked at the food bag immediately and wanted a cookie (I know I must have taught him that), but I told him I didn't have any at all and there's nothing I could do about it. I even showed him the bag, with juices and crackers. He opted for crackers, but it wasn't ideal for him. We escaped without a full blown meltdown, but he and Ronin were getting cranky because it was dinnertime. I wanted to avoid going to the store during this time, but I had put it off for various reasons over the week. We put the kids to bed later, but for some reason Nikko had opened the door and walked out of the room. I was surprised because I thought I had put the safety knob on his door. I walked him back into bed, noting that Ronin already fell asleep. Nikko seemed wide awake, but he didn't resist me tucking him back in, and didn't come out again. Tomorrow we're supposed to go to the Rec Plex ball pit. I know the boys will have fun, but I am a little worried that Audrey will not be satisfied walking around the perimeter. She's too small to go into the ball pit, sorry. She'd get crushed. We're supposed to meet Jovy there, too.

Monday, October 19, 2009

Ziplocs and head butts

During the lunchtime hours I went to a brunch at Meson Sabika in Naperville with a few of the girls from my group. It was nice to hang with them and talk about a variety of things. Rhonda, the McD's playdate I had a few months ago, will be leaving in two weeks for Oklahoma (she's in the armed forces) and her three kiddos will be in their dad's care. He'll be fine, he's military too. I heard he puts each of the kid's clothes for the day in a ziploc bag, for each day of the week. Reminds me of my diaper bag and how I put the #6's, #5's, and #4 diapers in their own ziploc (credit Atz for this idea). It definitely helps in a pinch, and makes it easier for another person to change a diaper. That rarely happens, but if it did....

Since I was gone, I didn't see the kids for the middle of the day. Both boys had huge meltdowns when I left. Nikko could see that I had my purse ready, and when I put on my coat he started whining and crying. Denis had to hold him back, and I closed the door before Ronin got to it. When I came back 3.5 hours later, Ronin and Audrey were all smiles. Nikko was napping on the living room floor. Over the past week I noticed that Nikko hadn't been covering his ears as often as he had in the past. But tonight I noticed that he did it a little, at random things in the house, and definitely at me when he was upset that I wasn't understanding what he wanted in the kitchen so I started singing a song. I had just cooked something on the stove top and he pulled up the stool to put his hands there. I was really adamant about him getting away and he got so mad at me. His actions preceeding a tantrum are big huffs and puffs. I've noticed over the past two days that he's doing something I've heard called a nervous "tic" where he jerks his body slightly. It looks like a glitch and it bothers me so when I see him do it I hold his head steady and talk him into something else.

Instead of going to the grocery like I should have, I told Denis I'll go after the kids are in bed but also that we should take them outside to play since the weather was milder than any day before. The kids fought a bit over the Little Tykes car, but I got them to be near the swingset for a bit. Audrey was toddling across the driveway and also sat in the swing. But the boys were getting antsy and they started fighting over the single stroller in the garage. It got ugly when Ronin, who was sitting in it, was stomping on Nikko's fingers, which were trying to pry the stroller away from Ronin. The final straw was when Ronin started head-butting Nikko to get him away. I was pissed and hauled Ronin off the stroller and into the house. I cleaned his hands and put him in the timeout corner. Surprisingly, he doesn't try to stand up and run away; he sits there crying and saying, "I want UP! I want UP!" Nikko wanted me to come outside and play but I was too angry with Ronin for hurting Nikko. It was all forgotten between them by the time they started eating. Tomorrow I still have to run to Costco to get chicken nuggets, but will also try cutting the boys' hair - - still haven't done it! No school tomorrow either.

Saturday, October 17, 2009

Oreos / Sophie / Mother of all Meltdowns

Our day was rather quiet. Nikko woke up WAY early, around 6:30 or so, and I was sure he would have woken everyone else up. Denis ushered him from the room to our bed, where Nikko seemed to rest but started gibbering and sitting up. I thought I heard Ronin start to stir around 7a so I took Nikko back to the room with me where I'd try to lie down with him a bit longer. Ronin was still sleeping when I came in, and Nikko continued to jabber instead of go back to sleep. Thus, I couldn't go back to sleep. Around 7:20a I decided to just get up and get Nikko some breakfast. Ronin woke up 20 minutes later, then I got Audrey closer to 8a and we were all awake in the kitchen except for Denis. This early waking caused Nikko to become cranky and fall asleep in the living room with us around 11:30ish. Any nap I tried to take was interrupted in 10 minute intervals by any kid in the room, take your pick. After lunch I put Ronin and Audrey down for their naps. But we had to get rocking and rolling around 3:15p because we were meeting the Creens in downtown Mount Prospect for the tail end of a Halloween celebration by the village. It was supposed to end at 4, then Oktoberfest was to continue for the adults. It was a dreary day, not as cold as it has been, but drizzling off and on.

When we got the kids in the stroller and walked to the street intersection where the event was taking place, Nikko started getting antsy and was reaching for the food bag immediately. I wondered if he was hungry for a snack, and I knew exactly what he wanted. I managed to wait until we hit the grounds before opting to give Nikko a cookie. It was the beginning of uncomfortable tension for us. As we met up with the Creens, I realized that Denis and I will have to work out a plan for handling Nikko's public meltdowns as a team. I know that giving Nikko a cookie when he starts to lash out may quiet him down temporarily, but isn't the healthiest alternative. Unfortunately, it is the only motivational item (besides a lollipop) that will placate Nikko in public. Carrot sticks or celery just won't cut it with him. And the saltine crackers or the graham crackers I normally carry aren't satisfying enough for him either. When I tell him I have no cookies, whether or not it's true, and when I stick to it and don't give him any, an inevitable meltdown/tantrum always follows and no one is happy. I usually have to leave the store I'm in because the spectacle is so great. Not fun.

Back to the Halloween thing, the Creen kids went on a pony ride while we observed from the sidelines. Ronin didn't want to leave the stroller for whatever reason, and I was positive that Nikko would probably spook the ponies if we tried to put him on one. Audrey - forget it. We headed into an Oktoberfest tent to get out of the cold and it was heated quite nicely. It was a good place to snack the kids, which I proceeded to do. Graham crackers for Audrey, crackers for Ronin and Nikko, and leftover popcorn for Nikko as well. Nikko was excited to be in the tent and seemed to like all the different people milling around. The entire grounds was loud with music piping from overly loud speakers. Nikko started running from our table to the entrance of the tent, laughing when he brushed by someone's leg. One nice guy remarked that I had my hands full, and I agreed with a smile. As I tried to give Audrey crackers in her stroller, I noticed that Nikko was venturing out a little further from the tent entrance each time. The entrance had cement barricades on either side and Nikko was soon running halfway past the barricades. I went back to fetch him a few times, entice him with juice and tried to run alongside with him to change his direction. One time I saw that he ran up to a little girl, and the girl hugged Nikko. Kinda cute, but not if the parents didn't like it. The girl continued to come into the tent by us, and when I looked at her I noticed her face from the sheet of classmates from Westbrook. I looked up at the mom and we introduced ourselves, happy that Sophie and Nikko knew each other. Nikko didn't seem to mind her presence, but was also staring over and around her, eager to get back to running. Sophie was nonverbal when I observed Nikko's preschool back in May '09, and the mom (Caroline) told me that she was still nonverbal for the most part, but could say "Hi Nikko" and "Bye Nikko". Sophie is 3.5. This must be her 2nd year in Westbrook. Her father's name is Fabian and I saw him at the last school meeting. There is a Halloween Hoopla at the school where families can come for the last half hour of class, but I am debating whether or not I can go with both Ronin and Audrey. They are still so small to cart around, Audrey not a pro-walker yet, and Ronin would definitely be everywhere. I wouldn't have a helper. BUT, I told Caroline that we would go to the sign language class on the 29th for sure.

After they parted, things went downhill for us. Nikko's running increased and Ronin joined him at the tent entrance. Nikko started running into people's legs, brushing by a person and laughing. Some people would look down and laugh, some would ignore him, and I started to see some "looks" from others. If I was nearby, I'd apologize. I heard an announcement that more activities would be taking place in our tent and realized that even more people would be walking our way. Nikko was not listening to me when I hauled him aside, and he would forcefully pry himself out of my grasp. I decided we had enough and should leave. Nikko began protesting loudly, crying out and struggling violently because he didn't want to leave. Then he started turning around and hitting at the balloons tied to the stroller. He was bucking in his seat. Finally he started lashing out at Ronin. I firmly held Nikko's arms down and told him to calm down, to which he cried and hissed his refusal. I saw a lady at the next table looking at Nikko quizzically so I put my arms around Nikko and hugged him tight. I wanted to cry right there, but pulled it together and told Denis it was TIME TO GO NOW. Bless Patrick Creen's heart, he helped wheel the stroller while Denis and I took turns hauling Nikko back to the car. When Patrick left and we started loading the kids, I couldn't help but start bawling. I put Nikko in his chair and told Denis to give me an Oreo for him to calm down. Nikko started swatting Audrey's car seat, so I figured the cookie would calm him. I gave it to Nikko in his right hand so he couldn't swat at Audrey, and Nikko was wailing GOOOOOOOO GOOOOO GOOOO. I fell apart and heaved big sobs, embarrassed for his public outburst, saddened that I couldn't calm Nikko without a cookie, and just plain old feeling horrible that Nikko had to go through this tantrum. He was probably overstimulated by the sights, sounds, smells and being outdoors. I cried on the way home. We still haven't figured out an alternative go-to item besides Oreos that would be appropriate for Nikko in a tantrum moment. Nikko was back to his old self when we got home, but the pain from our outing lasted a long time for me. I may write a message on the autism forums regarding the Oreo alternative; maybe those moms could lend me some insight.

Pre-toilet training reading

Nikko went on a field trip to The Grove in Glenview. It's a park that has a nature center, and during the fall they have a pumpkin patch. Nikko wasn't supposed to bring a backpack and was to dress to the weather. It was going to be wet and cold. I did the best I could, but Nikko didn't want to let go of his burp cloth. I knew it was going to get dirty out there because he tends to drag it while walking. OH WELL. When he came back, he had a pumpkin "picked" from the patch. Alicia, Atz's youngest, was here in the morning because Atz had an appointment with an acupuncturist. It wasn't hard to have her here, and Ronin got to see someone different around the house. I had to put Audrey in the crib while I went outside with Ronin to pick up Nikko, and when I came back in Audrey was screaming at the top of her lungs. Not sure if she was upset that she saw only Allie or that Audrey was left in the crib and not roaming. It took a while to calm the girl down. I was supposed to rendezvous with Anna and Jovy and Max for another McD's playdate, but naptimes were variable for Jovy and we didn't end up meeting. I still took the kids out and they fell asleep in the Pilot for a short time. Then I took everyone to Costco and tried to make it a quick trip. The boys were relatively good, but I felt bad for Audrey because she had been in the car seat for a few hours and was getting very antsy. When we finally got home and unloaded, I snacked everyone and then unwinded with the kids in front of Hi-5. It's been a few months since we've watched a few episodes and Audrey seemed enchanted by the music, the friendly faces and the colors. Ronin and Nikko watched with interest as well, and I'm glad that everyone was favorable to them. The evening went by with a slightly later bedtime, but we'll have to wake up on the early side tomorrow because we're going to go to Hinsdale church.

Last night, I finished reading the toilet training book that Boon's mom gave me. It was insightful and was written by the same woman who wrote the behavioral strategies book that I'm also currently reading. It had lots of short case examples, which was nice to read so I could get an idea of how other people handled situations. The prevalent method in this book was the use of a picture schedule. That's going to help Nikko along with the steps necessary to eat, drink, then go to the bathroom and do his business. Another thing I got out of the book is that I should talk to the preschool about what system they are using with Nikko, pictures and whatnot, and streamline the process so that we are doing the same things at home. That's ideal, because in the video they took of Nikko he was being taught to sit on the toilet, whereas before bathtime we are having him stand up. Talk about confusing, eh? I'll have to chat with the teachers to see which is the better method for Nikko, then stick to it. Nikko didn't seem to fit the cues of someone who is toilet ready; he doesn't seem to notice or care when he is wet or having a bowel movement (unless he is constipated). He doesn't show an awareness of other people going to the bathroom or anything in the bathroom related to doing a #1 or #2. And he doesn't communicate if/when he needs to go potty. Still, we are trying to show him how to use it, to make a connection, and maybe a picture schedule will help with the routine-ness of it all. I am looking forward to getting together with the teachers to learn their picture schedule for Nikko, because I want to empower him at home with a sense of purpose instead of just floating around here. It will help me to interact with him, too. I'm dreading the messes that are bound to happen with potty training, but I guess I'll arm myself with Windex and paper towels and just be ready. *sigh*

Thursday, October 15, 2009

Cars all day

I had great plans to cut the boys' hair after lunch and then go to Costco. Totally didn't work out that way, because of Ronin. Lunch was fine, but it was while I was feeding Audrey after the boys that the trouble began. Nikko got hold of the McQueen car and wouldn't let it go. Ronin really wanted it. I told Ronin he couldn't play with it right now, that it was Nikko's turn. Ronin wouldn't hear anything about it. I promised myself I wouldn't yell at him today, but it was extremely hard. I put Ronin in timeout next to his high chair and he was super mad, wailing the whole time. Nikko was very patiently playing with the car on the table, ignoring Ronin and sometimes walking by him as if to taunt him silently. I don't blame Nikko, really, since Ronin taunts Nikko just the same. Somehow I managed to get us all out of the house into the gloomy, rainy day. We went to Wal-Mart in search for Doc Hudson. Nikko fell asleep and continued to doze in the double stroller. His head was flopping all over the place. Doc Hudson was MIA, but I found Ramone so we got him. I thought I could make it to Costco but I forgot the sale booklet at home and had to weigh the temperaments of the kids to see what else I could handle. I opted to go to Meijer to look for Doc Hudson and still came up short. By now Audrey was getting antsy from being in her car seat for so long, so I headed home. I put in Nemo so the kids could unwind from being cooped up in the car. During dinner, Denis came home so the kids got to see him earlier than usual. Nikko wanted to do some running in the kitchen after dinner, using his GO, so that's exactly what we did. I also engaged in some tickle play with him and Ronin in the living room. Before bedtime I took out the Cars wall decals I got from Target the other day and dispersed them on Ronin's and Nikko's walls. I gave Nikko the opportunity to stick Mater on the wall himself, as well as a few other random stickers.

Tomorrow Nikko's class will take their field trip to the Grove in Glenview for their pumpkin patch. It's going to be cold, but Nikko won't wear a hat or gloves long enough to stay in one place. I'll have to put his hood on, hoping that will be enough protection for him. And his winter coat. No gloves... I hope he'll be ok. Plus, since they told us not to bring his backpack, I hope he'll be fine if he doesn't bring his burp cloth. There will be nowhere to put it.

One more thing... after lunch Nikko came up to me and signed POPCORN. This is the sign I use for those Pirate Booty corn puffs because I don't have a better sign for it. He looked at me skeptically, knowing Popcorn was as hard a sell as Cookie. But I told him I'd give him some if he ate his nuggets, which he made an attempt to do. When I was signing back Popcorn, I tried to anunciate POP-corn, and after a few tries I SWEAR I heard the sound "Pop" come from his mouth. Never heard again. But maybe I can coax another word from him soon....


This morning the phone rang at 10:30a. I saw it was the school and worried that Nikko was sick and that I'd have to pick him up. It was Kathy Winters, telling me that Nikko was fine, and has he said any words at home yet? Nope. She told me that in speech today he said "GO!" and that he said it other times in the morning, and waiting in line for the bus to go home. She was so excited! I was happy to hear this, but slightly skeptical because I wondered if he really said that or just a derivitive of Go, or in a nonpurposeful way. Kathy told me that video was being emailed later. So, when Nikko came home from school I praised him on his accomplishment. After lunch, we started running in the kitchen. I'd say GO, then we'd run to the door. I'd say STOP. Then Nikko would say GO and we'd run to his chair. I'd say STOP. Then Nikko would say GO and we'd run to the door. When I said STOP again, he actually tried to sign the word STOP before saying GO. So every time we stopped, I'd sign it as well as say it. We had a grand old time. When the video came, I sat to watch it. Nikko was working with Kathy Winters in the speech room, holding a school bus. She'd say, "Ready, Set..." and wait for him to say "GO!". She prompted him at first, but ever after that he said GO on cue! Then she'd roll the bus toward the door. He'd get it, inspect it, and bring it back. Kathy would make Nikko choose either the bus or the bubbles on a picture board, and he chose the bus each time. She signed BUS, which is what I was hoping for, and it looks like two hands with palms facing out, alternately going up and down as if you're wiping a spot with an up and down motion instead of in circles. I saw that Nikko signed it back to her, but his palms were facing inward. Later she switched to a scooter board and Nikko said GO on his own. Finally, they did some racing down the hallways, just like how I did it at lunch, except they'd use Ready, Set, GO! It was exhilarating to watch, and I laughed at Nikko's expressions and attempts to form the word GO on his lips. His word GO had purpose, it wasn't just an echo, and it really made a communication step forward. There were plenty of high fives to be had today. :)

I had to take everyone to Target because I had to get Ronin his most recent prescription of Flovent, up from 44mcgs to 110mcgs. Hope it helps. Nikko was falling asleep on the way there, but I had to wake him up because I thought he'd be the one walking. The boys were relatively good in the store, but I had to placate them with Oreos. They did, however, stay in the double-attached shopping cart, although Ronin was on the verge of wriggling out of his seat. There was no way I could let one kid out, because the other one would soon follow. Ronin fell asleep on the way home, so Nikko and I shared some fries. I was unsuccessful in getting Nikko to take a nap, so by bedtime he was really tired. Tomorrow is another school day, and I'm going to try to cut the boys' hair. You can tell they really need haircuts. I'm also going to have to go to Costco because we are falling behind on rice milk and Nikko's diapers. I had a playdate originally scheduled with Jovy, but since Costco won't happen until probably after 2pm, even 3pm, I don't think the boys will be able to play nicely or even behave at Jovy's house. They'll want to unwind and stretch their legs at home, and then it'll already be close to dinner by the time we get back. I'm learning my limits with them, despite some efforts to push the envelope. Well, can't get away from the fact that it was a great achievement day for Team Nikko. Hooray!

Wednesday, October 14, 2009


Nikko had a good progress report from school today:

OT - Did swing & trampoline activities. Each week Nikko stays with the activities a little longer. Lots of smiles today. At Table - played with unifex cubes, stringing beads & play floam.
ST - Nikko doesn't cover his ears when he sees me anymore! Now he smiles. :)

Ah, good things!

In the afternoon we had a play date with Jovy. The kids were happy with the company, and I could tell that Nikko was excited that there were new people in the house because he was doing the Nikko dance and falling clumsily to the floor. He bounced on the trampoline a few times, too. After they left, I put the two younger ones down for their naps (Audrey was way overdue) and Nikko was left to have a snack with me. I gave him some Pirate Booty white corn puffs, which he liked immensely. When he wanted more, I realized I didn't have a sign for corn puffs, so I used the sign for Popcorn, which I learned yesterday. You point the index fingers of both hands upward, like popping corn. It's kind of like the word for Stars, but I think the hands are more together for Stars. Anyway, Nikko imitated my hands to get more, and even later in the evening he came up to me and signed Popcorn for dessert. I had to comply.

Denis and I caught the end of Nightline tonight and the topic was the H1N1 flu virus. They showed children that caught it. The one on tv had asthma. I was immediately stricken and alert because it made me worry about Ronin. While Nikko is the one who goes to preschool and has more of a chance of exposure, I think any kind of flu would affect Ronin the greatest because his immune system is weaker than the other two, due to his asthma and respiratory problems. If Ronin gets a high fever or severe asthma symptoms this winter, I'm not going to wait to bring him to the doctor this time. He might not last four days. I worry about Nikko getting sick because he can't express to me how he feels. Poor guy.

Tuesday, October 13, 2009

Playdate with Boon

So it wasn't quite lunchtime, but I did keep my word and took the kids out for a playdate. Putting on those running boards on the Pilot was taking longer than initially expected. This was causing me to start getting lazy about leaving the house with the kids to go play with Boon, the kid of a very good couple I'm friends with. But I think having the kids go out and experience something different is better than staying at home, watching TV and messing up the living room. Once I heard the Pilot was good to go I confirmed that we'd be making the drive to Elgin. Denis and his dad stayed to work on the lawn mower but ran to Sears to go get some extra parts. It took me an hour but I was able to get the three kids' diapers changed, prepare the food bag and get the socks, shoes and coats on everyone. I should time myself the next time I have to suit everyone up. I didn't bring a toy bag because I figured we might lose stuff there. I did, however, pack along Chick Hicks and Mater in case Ronin had a meltdown.

When we arrived, I had one awake baby girl and two sleeping brothers. Everyone woke up when we were inside, however, and Boon had a plethora of cars and trains to choose from. There was a lot of parallel play, which is to be expected. Boon was a friendly chatterbox and was very accommodating about sharing his toys. But toward the end, Ronin started getting obsessed with Doc Hudson and their McQueen. Our McQueen is lost in the house somewhere. It's probably under the couch but I can't reach it. Ronin was starting to pry McQueen from Nikko's hands and a battle was ensuing. That's when I deemed it time to go, right after the diaper changes. When I had to change Nikko, he realized that he would have to leave all the toys and trains so he started protesting and not wanting to put on shoes or his coat. The scene was getting ugly so I pulled a lollipop from my bag and presented it to him. Presto! He was calm and let me finish dressing him up. Ronin was not so calm, but there was no placating him until we got home. Boon's parents were so kind to give me some toilet training books and picture schedule that they received from a seminar and used to work with their nephew, who is autistic. I will have to read the book soon so I can help Nikko get up to speed on going to the potty. Toliet Training for Individuals with Autism & Related Disorders by Maria Wheeler is the book.

Before dinner I was playing with the kids to distract Ronin and just to help them unwind. Nikko suddenly got on the trampoline and was jumping as if he thoroughly enjoyed it. I praised him for it, and when Ronin joined him I tried to usher Ronin off so that Nikko didn't "accidentally" push him off, which was exactly what was happening. I wanted Nikko to jump as much as he wanted; Ronin could jump with me later. Nikko did some running/crashing after dinner, but by bedtime he was in good spirits. I hope he doesn't wake up in the middle of the night like he did last night. I heard Nikko crying/screaming at 2:45a and I was certain that he had woken up Audrey and Ronin. When I went into the room, Nikko was standing in the middle of it crying, but Ronin was still fast asleep. I ushered Nikko back into bed and stayed with him until he fell back asleep. I think I crawled back into bed before 3:15a, and was truly tired this morning. Tomorrow Nikko has school, so I better go to bed so I can wake up coherent.

Monday, October 12, 2009

Lights ON

Yesterday the kids didn't actually make it downtown with me. The morning was rough because Nikko and Ronin went right at it, fighting for the car that the other one was holding. I spent the better part of the morning breaking up fights, deciphering who had which car, and trying to get some peace from it all. I was pretty frustrated, and so Denis offered to stay home with the kids so I could socialize with Abe by myself. I felt guilty about it, but time wasn't on my side so I took the offer and drove downtown to Macy's to meet up with Abe at the 7th floor food court. It was good to catch up with him, and comforting to know that he is such a good, long-time friend. His wife was driving from Peru to meet up w/him and then go up to Kenosha. After our meeting, I went to the Whole Foods in Palatine to get more Earth Balance fake-butter spread for Ronin and any other essentials like Mac Chreese. [Yes, you read that correctly. Mac Chreese sounds like "trees". It's the non-dairy, non-egg version of Mac Cheese. Ronin actually likes it, but that's probably because he has never tasted real cheese before. It's got a tangy flavor to it, not crazy about it myself.] I hadn't been to this particular location before, and after this trip I don't intend on going back to the Palatine WF. It was very small and the aisles were very narrow. You could hardly fit two carts passing each other in an aisle. It's a popular store so it was very crowded. I think the one in Glenview is much bigger, and probably the one I will frequent until they open a new one in Schaumburg. The rest of the evening flew by.

Today, Sunday, our main outing would be Jovy's 2nd birthday party. It wasn't until 5pm so we had the day to ourselves. Even though I went to bed at 2a and woke up at 8a, I felt so tired and sluggish. The boys were awake at 8, and when I went inside their room Ronin was laying in Nikko's bed while they were both babbling about nothing in particular. Nikko has been taking cars and racing them back and forth along the countertops. I don't think it's really productive play because he revs the car almost furiously in large sweeping motions. We borrowed the trampoline from the in-laws and it's in the living room, but Nikko hasn't made his own attempts to jump on it. I have to initiate the jumping and lead him to it. Something that Nikko does like to do is go to the wall, step on whatever big, bulky item is sitting on the floor, and turn on the living room light switch. It's a great skill to have, except that Nikko seems to always want the lights on, even during the day. I'm not sure how to get him to turn them off, because they are expensive halogen lights. Hmmm. If he were doing ABA therapy we would reward him for turning the lights off or for staying away from the light switch. Distraction might be another alternative, but even when I lead him away from the light he turns around and hightails it back to the switch. I'm going to have to figure out another way to deal with this behavior.

It came time to go to Jovy's house and although we ran a bit late everyone seemed to be in good spirits for the evening. Audrey got cranky because she actually missed a late afternoon nap. She fell asleep in the carseat on the way home and I had to wake her up to take a bath and then go to sleep again. Ronin played with Jovy's toys and was agreeable for the most part, until it was cake and present time. Nikko ate a lot of crackers covered with garlic & herb cheese spread and was very behaved. This is surprising for a kid who hadn't had a nap all day. It showed when we were reading stories for bedtime. Nikko didn't have any energy for songs, and fell asleep during prayers. That's fine by me.

Tomorrow is Columbus Day. Denis has the day off and his dad is coming over to help put on the running boards of the Pilot. Around lunchtime I plan to take the kids to a playdate with a friend in Elgin. I hope it happens; it will be nice for the kids to socialize with people other than relatives!

Saturday, October 10, 2009

Chinny to the rescue

I'm going to have to ask Nikko's teachers what the ASL sign for Bus is. Apparently he's signing it in speech. I looked it up online but am confused because there seem to be multiple versions. I saw that there is a Sign Language night coming up on the 29th. Whole family is invited, so I might very well drag everyone. I'd like to be on the same page with the others on what signs are being used. Today he waved at the twins' mom when we parted. Later in the day, Chinny came to visit us and when she came in we all said Hi and Nikko started waving Hi to her. His hand wasn't facing outward, but was facing inward and cupped, but I saw that he was shaking it up and down in a greeting. That works for me! Perhaps his motor planning isn't telling him to turn his hand and wave side to side. He's trying to copy us, so that is great. Chinny was so kind to offer to go to the grocery for me. I have honestly been trying to go all week, but it seems like when I'm with the kids solo I can only handle one store a day. It was Target one day, then Costco the next, and I couldn't make it to the grocery because Ronin had to have a stable nap since I was dragging the kids around during their proper naptimes.

Audrey has had two phenomenal days of gains in her walking. Yesterday she was pulling up to stand on furniture and taking 4-5 steps before plopping down on her butt, then looking up for an audience and clapping her hands in approval once she got it. This evening at the in-laws both Vunge and I noticed that Audrey was able to get into a squatting position, then pull herself up to a standing position without any support. And she was toddling with more steps than yesterday. Amazing! Did I forget to mention what Nikko did yesterday when Audrey was going to go to bed? I usually bring her to the boys so they can give her good night kisses. They both lean in and give her a kiss. AW. Audrey had dropped her pacifier on the floor; Nikko retrieved it, then positioned it in front of her face and pushed it into her mouth. Easy peasy. I thought that was very observant and thoughtful of Nikko to know that it was Audrey's pacifier and that she usually has it in her mouth.

Tomorrow we're supposed to meet my friend Abe downtown for a late lunch. I know the morning is going to fly, and I hope we can make the most of our time downtown with the kids.

Friday, October 9, 2009

The lump on my head

Another happy Nikko came back from preschool today, happy. The notes were positive, saying he ate popcorn in snack and was consistently moving the popcorn pic to his picture schedule binder at school. After lunch I put in the Time to Eat DVD. He seemed interested in it at first because there were new songs and a different layout. I gave him the 2nd DVD to look at and he ended up carrying it around the living room for most of the afternoon. Sometimes Nikko signs Cookie to me while looking down, then I see his eyes glance up at me warily knowing that he's not supposed to have a cookie but hopes that I will give him one anyway. It rarely works since he's signing for a cookie during lunch. Or dinner. Sorry buddy, only during snack time.

Later in the afternoon, the boys found some plastic balls from the ball tent and were throwing them up in the air. Audrey was by the mirror wall and I was by the DVD player. Suddenly something hit me on the right side of the head, something slightly heavy, and landed on the floor. I looked down as the pain suddenly jolted into my head and I saw the green Chick Hicks matchbox car on the ground. Nikko had picked it up and thrown it up into the air like the plastic ball. It HURT and I immediately started to cry as I held my head. Nikko saw me and ran to the window, crouching behind the ottoman but then started watching TV. Ronin came up to me saying, "Mommy? Mommy?" I was horrified that Audrey was sitting so close by and could have been the one pegged in the head by a metal car. I marched over to Nikko, cornered him and told him he hit mommy in the head, it HURT, and say SORRY. Nikko wouldn't look at me, purposely avoided my eyes even when I held his chin in my hand. I gave up and sat there crying harder because Nikko had no idea what he did and didn't care. I went to the kitchen for an ice pack and Ronin followed me, "Mommy? Mommy? Mommy sad. Mommy crying." I let Ronin comfort me, but even now the lump on my head is tender.

Nikko didn't pick up any signs today, but he did manage to drag me over to the DVD player and sign that he wanted the Signing Time dvd. I prompted him a little, but his intention was clear to me. During a tickle game I had him sign More if he wanted me to continue. I'd like our communication to go beyond the kitchen and food.

Audrey was a trooper today. From the morning after breakfast, she was trying to toddle around on two feet a lot. She'd take 4-5 steps and then falter. She'd look to me for praise, and then clap her hands when she saw approval. So cute!

Thursday, October 8, 2009

Improved signing, and The Future

Yesterday Nikko seemed to have a good day at school. He did OT stuff using the swing and scooter board. Mrs. I said she's trying to get him to stay with these activities longer. After lunch we headed to the McDonald's Playplace to meet up with Anna, Jovy and Max for some fun. Nikko seemed to have fun running around at first, but later he opted to look out the window and run a car along the window sill. When we left, I decided to take a risk and run to Costco for a chicken nugget refill, milk and other little stuff. Ronin had fallen asleep in the car and was completely knocked out in the cart for the first time ever. He usually wakes up when transported, but since he missed his 2pm nap I think he was really tired. I let Nikko walk next to the cart in the store and he did fairly well, but started pausing when he came upon a seam in the concrete floor, put his two feet together, and then stepped over the line quickly. The weather was blah so it didn't feel inviting to be out.

Today Nikko had a good 1:1 session with Ms. Winters.
...We went around building waving "hi" to office folks. He was doing a great job with high fives! He was doing pretty consistent choice pointing to pix for choice of 2 bus/bubble/cracker. I was also getting "mmm" for cracker. I was telling Three Bears story at group lang. with voices and huge drama and he spontaneously signed "cry" several times during story when baby bear was sad (I was not using the sign then but we did it a lot last week when theme was emotions!).

For the past few days I've been signing "sleep" for sleepy with him and he gets it. Yesterday I was signing happy, and during lunch today I was signing about being sad/cry and happy/smile, all before reading about his progress report. Nikko must be paying attention to how people are reacting/feeling. My next two Signing Time DVDs came via UPS today, My Day and Time to Eat. I'm excited to start using them, so I'll play it tomorrow after lunch to see if he's interested in them. They have more words that are relevant to our day-to-day, even though the DVDs are out of order in the series.

Denis and I have been talking further about how to handle the whole ABA situation. It helped that I listened to a message that Kathy Winters left on the machine yesterday, saying that there's a lady named Linda Heck who works for the school's autism group. She's going to observe Nikko on the 20th of October and then will talk to us about her findings. I'm very curious to hear what she thinks, if ABA would be a good option for him, and how we could possibly go about getting it. I wonder if we could do ABA through the school, or if we'd have to go to a private service, and then wonder how we'd pay for it. I've really got to take advantage of Nikko during these preschool years, especially while he's working with these two teachers who seem to know what they are doing, are sensitive to Nikko in this mixed class environment, and especially since Kathy is a speech therapist. Also, these teachers seem to really CARE about Nikko and his development, and seem to be working with him to reach his IEP goals. I have NO idea if any teacher in Nikko's future will work as hard for Nikko as Kathy and Margie are. I have no idea if Nikko will be able to go to Kindergarten after the preschool years. What if he has to go to a special school? Can he possibly be mainstreamed into Fairview? With an aide? So many unknowns here. Finally, I am seriously toying with the idea of doing home-based therapy with him, with me as his facilitator. I am hesitant because Ronin and Audrey are here in the mix, are so young and demanding of my attention more than Nikko is. I don't know if I will be able to do 1:1 therapy with Nikko without the babies. Maybe I should look into having Chinny come over again, perhaps in the spring or maybe even in the summer months when Nikko doesn't have school, to play with Ronin and Audrey while I do some intensive therapy sessions with Nikko. I am not a trained therapist, by any means. But I like to read, and I have had to read lots of things about autism and every other topic useful to run this household including eating right, child rearing, and all Ronin's allergies. One big thing I am so worried about, and the thing that keeps me from believing that I am qualified to take on this huge role, is that I am not patient enough. It sounds trite. But all the therapists have a deep well of patience with their clients, are able not to take rejections personally and are able to keep moving forward despite slow progress. Lately, Ronin seems to push my buttons all in the wrong direction and I am constantly harping on his whining. It's not healthy, and I don't feel good about it. If I can't keep my cool with Ronin, who is only 2, how can I possibly keep my cool with Nikko? This is my daily struggle, my daily cross to bear. Some days I'm in a great mood and there's no yelling to be had anywhere. But yesterday I was so annoyed at Ronin that everything he did was setting me off. Today I was so fed up with the fighting between the boys, the pushing and the whining and the unfair taking of each other's toys that I'm sure I screamed my anger more than once. Nikko even covered his ears a few times while I was walking around in a rant. I'm not proud of it. And even more so, how am I going to calm myself if I have to become a sit-down teacher with Nikko? Don't recommend yoga or pilates. I hardly have any time after the kids go to bed to be blogging, and I have to delete a show on the DVR because I just won't have time to sit for a whole hour to concentrate on a complicated storyline. I've actually looked up online how to have more patience, and have not found anything satisfying. Go to another room and close the door? Yeah, and when I open it all three kids will be screaming, pounding away at the door, tears and spit all over their faces because I separated from them for a minute of "peace". Scream into a pillow? Done that. Doesn't help to unleash my anger. Pound the wall? Sure, but not good for the furniture. Count to 10? Works sometimes, but not when the anxious bubble has beat me to the top. *SIGH* Well, I've got to stop blogging so I can get in five minutes of reading an autism book. I've even stopped my subscription to Real Simple, my favorite magazine, because I can't keep up with the issues that are coming. I will just read the articles I've ripped out of past issues, read up to the ones I got before discontinuing, and not subscribe to anything else. No time to read a magazine. :(

Tuesday, October 6, 2009

Baptism / Research

I spent the afternoon with Ronin at a new allergist. Ronin's former allergist closed their Barrington offices and reside in Elgin and Lake Zurich, too far for me to travel with the brood just for a flu shot observation. The new allergist is in Hoffman Estates, Higgins & Barrington road so much more manageable. He's still allergic to dairy, eggs and peanuts/all tree nuts, but also found a small reaction to feathers, and an allergy to dogs. No reaction to cats or dust mites. Hmmm.... we have to weigh our options about having Lego in the house.

Nikko had a huge tantrum when we left, but when we got back he had fallen asleep in the living room. The rest of the evening was uneventful, but I often look at Nikko and wonder if letting him "play" with his cars along the bookcase ledge by the picture window is a good thing. It's probably stim-like letting him run the cars back and forth, but he can break away at times to look at the tv or at books. Lately, Ronin has been going up to Nikko and grabbing cars right out of his hands. If a battle ensues and Ronin gets away, Nikko comes to me, grabs my hand and leads me right to Ronin. He lets go and looks at Ronin, then to me to solve the problem. I have to stand there and figure out the problem because Nikko can't tell me what happened. Often, I have to watch and see what cars Nikko was playing with so I can determine if Ronin has to lose what he's got, to be fair, or if Nikko is just wanting what Ronin has. It's been exhausting to separate these two when they fight.

On the imitation front, Denis told me yesterday that Nikko imitated the motion for Want when he prompted Nikko with cake. We were at Alessandro Orquiola's baptism and had to placate the kids for a while before lunch was served. Nikko was following the other kids who were running around, and found refuge under the draped cake/drink table. I followed him to see what he was doing and almost had a heart attack when I saw that he was standing in front of Alessandro's cake. But Nikko simply dove to the floor and crawled under the table, joining the cousins in the dark. If he didn't make a move for the cake, then I was strangely satisfied with this activity because he was being social and because it made him happy. While we ate, Nikko stood nearby and was standing on one leg, then falling to the floor. I wonder if he needed some sensory input. I think he gets some input during school hours and on the weekends he's not getting anything. Hmmmmm. I gotta remember to borrow the trampoline from the in-laws when we go to dinner on Friday, if they aren't using it. It's supposed to be an OT thing. If they can't spare it, then that's the next thing I'm going to buy for Nikko. Ronin can share it, no problem. But it's mainly for Nikko. Anyway, Kathy told me that she squatted down to say hi to Nikko, then he came up to her and kissed her on the cheek. How cool is that? Way cool!

OK, now it's downer time... Since Nikko's Oct. 2 visit Friday with Dr. Keen, I've been trolling the internet for info on ABA Therapy and variations thereof. This morning I called Blue Cross Blue Shield and asked them if Nikko had any coverage since he's autistic. The lady said I had to provide a 5-digit procedure code for therapy and then they could determine if he's covered for anything. I was confused, because I thought a law had just been passed in Illinois that said up to $36,000 and all services for those with autism were covered. She plainly told me that BCBS is a goverment plan and therefore the law does not apply to them because it was a state law, not a government law. That totally took the wind out of my sails. BCBS will cover some services for PT, OT, and Speech, a $30 copay and up to 50 visits per year. But that will hardly meet the needs of ABA Therapy, which can be 25-40 hours per week. It's looking like BCBS probably won't be able to cover any ABA Therapy and we may have to pay out of pocket if we go that route. I've listed other options, but it's looking very dreary for us. I wrote an email to Nikko's teachers letting them know our situation and if they had recommendations since they've probably encountered all this before, so I'll see what they have to say. I hope Ms. Winters can shed some light, especially since we're looking for an outside speech therapist too. I'm reading posts on other websites to see what other people have done in this situation, and the info is quite sketchy. I wonder why! My heart is sinking because I'm finding out that one hour of ABA could go anywhere from $20 to $45 to even $120 depending where you go. On the Naperville Meetup site I'm finding some really good threads about it, and jotted down some names of companies, but am hearing that some of those places are extremely expensive. I've got lots to research, little time, and no template to follow right now. Very disheartening, really. Another option is to self-teach ABA to Nikko, but I have two other kids under 3 and it's really hard while they are around. Somehow I've got to do something, I can't let Nikko become stagnant! This is also why I am grateful for preschool. They are keeping him engaged in the mornings, except Mondays. Perhaps I should line up a speech therapist for Nikko now, and get to ABA later. That's a start. It was a lot easier when we were going through Early Intervention where they did all the searching for therapists and services for me. Now that it's all up to me to get Nikko services, I am feeling totally overwhelmed. I don't think I will be for long; I'm about finding a solution to a problem. That's why I got the MBA, right??

Sunday, October 4, 2009

Band Competition @Prospect High School

We all seemed to have a late start this morning, by an hour. Before I knew it, it was lunchtime. :P Ronin's naptime soon followed, and then by luck Nikko fell asleep around 4:30. I had the opportunity to leave the kids with Denis and run to Costco and Jewel for provisions. I chatted with Atz and she mentioned that Tristan had a band competition at Prospect High School. I was surprised, and remarked that we should all go see it. Prospect High School is really only blocks away from us. The only caveat was that it was raining, drizzling kinda heavy. Still, I was up for the challenge. Crazy. And after finding parking far from the school, Atz, her girls, and our clan (sans Denis, who went to pick up Lego from Petsmart where he finally got a bath, but joined us later) raced up toward the football field. I had the kids in the double stroller, wearing Audrey. I didn't bring any food bag because I didn't think we would stay long. Due to the rain, we discovered that the bands would continue in the gym, so that's where we ended up. I wanted the boys to experience something totally different and exciting, but once we got into the gym I saw that we would have to sit up in bleacher seats. I didn't think the boys would sit still for this, but gave it a try. I also sent Rory to the concession stand to get 3 bags of M&Ms in case Nikko had a meltdown. Unfortunately, I had no food for Ronin and didn't think I would need it. Atz carried Ronin up into the seats while I led Nikko by hand. Nikko was surprisingly calm and walked up the steps without any nervousness. We sat down and Ronin started getting antsy already. I used to think going out with Nikko was the only problem, but Ronin is just as stubborn and sometimes a curious troublemaker. We sat for a few minutes before Glenbrook South High School marched on to the scene, and a minute before they were going to play, Ronin was getting vocal and Nikko was also starting to get restless. I tore open the bag of M&Ms and started feeding them to Nikko, who froze in his steps. Ronin needed more persuading from Atz to look at the band, flags and instruments. I suddenly realized that me being there with the boys was a total mistake because this was a band COMPETITION, not a band concert or show. I wanted to get up and take the boys out but it was too late; the people running the competition wouldn't let us out at this point anyway, so I prayed that Ronin wouldn't struggle, that Nikko wouldn't get overstimulated by the LOUD music, drums and percussion, and that we would be able to maintain silence until they were finished. Lucky for us, Ronin sat by my side and was only a little vocal, and stopped trying to get out of the seats. Nikko ate the M&Ms and did only a little leaning on the person sitting in front of us, who was thankfully a kind person. Audrey was a little restless at times, too, which worried me even more than the boys because if she wouldn't take the pacifier then there was no calming her. I looked around at the sea of parents and noticed that there were no babies in the stands. There were a few younger kids, but no one that might start crying. The kids got a kick out of the applause between numbers and they all tried clapping their hands too. When it was all over, I immediately scooped our kids up and walked us down. I was able to catch a glimpse of Tristan, second to the front of his row, in his uniform and carrying his baritone. We all walked out in the rain, headed home and did our bath routine. We survived our outing, but I know that in the future I should not bring the kids to something that we have to remain quiet. Which actually brings me to wonder about the baptism tomorrow. I wonder if we should go and hang out in the vestibule, because the kids will not sit still for it. Mom would probably tell me to go and try to have the kids sit still, just so they can experience being in church, but I worry that they will be loud and distracting. We will go, but I will be realistic and won't expect us to be in the main part of the church. Anyway, I didn't think Nikko was tired enough to fall asleep at bedtime, but he must have been ok with going to bed because I was able to leave the room without a protest. And he didn't try to climb into Ronin's bed either.

Saturday, October 3, 2009

Visit @ Marianjoy

I stayed up WAY too late last night after blogging, to watch the Olympic bid for Chicago to host the 2016 Olympic games. I wanted to see Michelle and Barack Obama give their side of the presentation, so I stayed up late and was not disappointed with their speeches. But it ended at 2:45a. Needless to say, I suffered greatly 4 hours later. Can't seem to sleep so late anymore now that preschool is a priority.

Nikko and I arrived at Marianjoy early. We were in a hospital room and a nurse brought in a colorful rug mat, some cars and blocks for Nikko to play with. Dr. Mary Keen normally runs late, I've been told, but she wasn't that late for our appointment. Just a little. She was a very natural-feeling woman, smiling and listened eagerly and without judgement to what I said. I brought a list of concerns and that's what we talked about. I wasn't there to get another diagnosis of autism for Nikko; I already have TWO, and it's fairly obvious. I asked about the biomedical approach as well as the GFCF diet. She was supportive, telling me that it wouldn't hurt to try the diet if I wanted to, but she was not a supporter of biomed. Instead, she suggested Applied Behavior Analysis Therapy (ABA), which was the basis of our whole conversation after that. This kind of therapy involves something called "discrete trials," where a behavior is requested, then rewarded with a desired object/action if met. If the behavior is not met, no reward is given and they try again. Pavlovian, somewhat. But practically every concern I mentioned today was met with the fact that ABA can help Nikko behave appropriately. It's about replacing the unwanted behavior with a positive behavior. Don't ask me how, truly, because I am literally at the starting line trying to figure it all out.

wrote down the concerns I wanted to address:
Biomed - she didn't recommend it
Speech - she is recommending outside speech therapy, but someone that will work in conjunction with the school for Nikko.
Stims - something ABA can correct
Signing - the fact that he is communicating is great. Continue this, especially if he's comfy doing it, but also reinforce with pictures/PECS.
Food motivations i.e. Oreos, Fruit Snacks. Bad to give in? Yes. ABA can help correct.
Nikko getting out of bed and going into Ronin's - something ABA can correct, and perhaps he just wants Ronin's company. Not a bad thing.
Auditory Sensitivity - could be apraxia. More on this below.
Clinginess - goes with maturity, and just being Nikko.

When we first got there, Nikko had already begun to whine because he didn't want to be in the stroller. I think he also wanted a cookie from the food bag. Luckily and unluckily, the receptionist pulled out a jar of CANDY. I chose the M&Ms for Nikko because I figured I could make it last longer. Nikko was enthralled with them, and even signed More Candy with me. Once they ran out, however, I had to find a replacement fast. I resorted to the Fruit Snacks in my backpack, and it became an item of focus for him later on, much to my dismay.

I told Dr. Keen about the time that I held out a cookie for Nikko but put it near my mouth so he could watch my lips. I said Cookie and wanted him to say the word or make a noise that sounded like cookie so that I could reward him with it. He signed More, and Cookie Please, but I held the cookie to my mouth and repeated Cookie. I think he could tell what I wanted him to do, because he started shaking his head in strong protest and started wailing in disagreement. It was as if he didn't want to say the word. Dr. Keen asked me if I was perhaps asking Nikko to say the word and he was trying but he couldn't do it? I thought that Nikko was just being stubborn, but Dr. Keen stopped my thought and told me that possibility Nikko could have wanted to say the word but couldn't physically say the word, because right then he didn't have the motor planning skills to do so. I realized that maybe I was pushing Nikko to say Cookie, or CUH, or OOK, but he didn't know how to say it. And I felt like such a bad person! She didn't mean for me to feel bad at all. She just put it out there that he could have apraxia, which is a disorder of motor planning, that is the loss of ability to carry out learned purposeful movements, despite the desire and the physical ability to do these movements. I remember on that day, I had read something somewhere that it was so important to try to make Nikko say a requested word. I immediately felt like it was imperative to challenge Nikko. Unfortunately, after a 30-minute tantrum Nikko gave up on the cookie and left the room completely, and I was exhausted because it was a lose-lose situation.

Back to Dr. Keen, I believe our time with her was very beneficial to us. She highly recommends ABA Therapy for Nikko, and I now agree after reading some materials as well as posts from other moms. Later in the day, Nikko was asking for Cookie. He didn't eat a great lunch so I didn't want to give in to him. Nikko turned on the relentless whiny juices and he went on and on and on. I was tired and my nerves were grating. Ultimately, and defeatedly, I gave him a butter cookie to shut him up, and then I felt bad about everything. I suddenly fell apart and told myself that ABA will help him not be so relentless about wanting a cookie from me. After I stopped bawling to myself, I started getting us ready to meet up with the Alog Clan for dad's 65th birthday dinner at Senoya Buffet. During dinner, it was Ronin's turn to crank up the whining and be relentless. He wanted the fried egg noodles from Nikko's plate. I gave Ronin some to see if he'd react, and I believe he did start rubbing his face. Therefore I restricted him from them, and Ronin was livid. Sucks having a kid be so loud in so small a place! I tried to stay calm while trying to placate Ronin but it was just awful. Nikko, on the other hand, was an ANGEL. He even got some running time squeezed in by bolting from our table to the buffet area and back. Probably very annoying to the staff, but I couldn't handle Nikko while I handled Ronin. Denis tried to help, as did Atz's Dennis. We headed home late and gave baths late. At the end of the boys' bath, Nikko started melting down and refused to stand up, refused to get dressed, and was just plain tired. I think he was probably overstimulated and hit the wall, figuratively. I'm tired, too.

Friday, October 2, 2009

Target - Success!

Nikko's teacher wrote that they are using a request board at snack for the food item and water. They've been using a picture schedule with the entire class, but for Nikko specifically they use a ring of pictures of actions in the class like Stand Up and Sit Down. They said it will reinforce what he hears by him seeing the action. Mrs. Beyer said that when he boarded the bus to go home, Nikko started to get upset. She didn't know why, but it was enough that she gave him his burp cloth from the backpack and that helped. I still don't know what set him off, since it didn't have anything to do with school, presumably. He remained in a good mood for the rest of the day. After lunch it took me a while but I was determined to get the kids out of the house for a little while since everyone has been home bound because of sicknesses. Poor Ronin and Audrey haven't been outside of the house (except for Nikko's morning bus) since probably Saturday. My goal was to go to Target, but hoped that the kids would fall asleep for a nap in the Pilot. Thankfully, that's exactly what happened. I was able to go scope out a place called the Nibbles Cafe in Wheeling. It's in a corner of a strip mall and seemed to look like a nice place, but still haven't ventured in there since there's a "cover charge". I think it's akin to the Kohl Children's Museum but on a smaller scale. I do want to try it, though. I almost decided to go home because it was raining steadily during our outing, but thought the better of it. We got to Target and I used the double stroller. I made Ronin do most of the walking this time, and totally avoided the toy section. We got some bleach, diaper genie refills, sweatpants for Nikko, and hats for all the kids for the chilly weather. I had to use Oreos to placate the boys, and it was snack time anyway. So we made it out of the store in one piece, a little complaining from Ronin for more cookies, but overall it was successful. Audrey was an ANGEL. Nikko was also good, as long as he had a cookie to munch around its perimeter. My view was whatever it took to keep the peace, I did it. Too bad I didn't have lollipops. We got home, dinnertime rolled around, and then it was bedtime.

Nikko is getting better at signing for things, but I still have to prompt him. What was great about today was that at lunch I baked him a frozen pizza that Denis got, with cheese and pesto. I looked warily at the label because Nikko doesn't eat things when he can see the green. But I gave it a shot and perhaps he was really hungry because the pizza was a hit with Nikko. When he finished the first slice I signed More Pizza repeatedly, making a zigzag and exaggerating a Z sound. He attempted the zigzag and made a sound that sounded like ZUH. It was encouraging, although fleeting, but I went with it. Building on his enthusiasm was so key for me. That's also how I got him to copy me signing Butter, because he wanted bread and butter very much. I'm working on signing Napkin, Wipe and Hands, including a verbal prompt, because Nikko wipes his hands on the front of his shirt all the time instead of on a napkin. I wonder if I'll be able to succeed on this. Working on it! I don't think I realized it truly until today that Nikko and I are having a significant communication relationship. He's always tried to do this, via pulling my arm or finger off while dragging me to the kitchen for something, and he still does this. But along with putting in signs, and some verbal prompting, I feel like we're trying to interact here. I guess it's going along with him maturing. I hope to bring up anything I could possibly be wondering during our visit with Dr. Mary Keen at Marianjoy Rehabilitation Hospital in Wheaton tomorrow. We're forgoing preschool to keep our appointment. I'm nervous for Nikko, and for myself in that we actually find the place, get to the office on time, and not get lost. I also hope this doctor can give me more guidance with Nikko. I hope. I hope.