IKEA? Not this time.

Didn't have a heart attack getting out the door but still wasn't on time. I read in a magazine somewhere that "If you're not early, you're late." So true, so true. Socks and shoes need to be on by 9:05, giving me 10 minutes leeway to get the Pilot loaded. Let's try that again next week.

Ronin came with us to playgroup because the daycare is on vaycay this week. He was a little disruptive but it was considered normal toddler behavior, the whining and the crying, getting underfoot and moving around between kids and toys. Nikko did very well in circle time after he ran back and forth a bit during the beginning. I got up to haul him back only twice, while Ronin sat down in one chair, then switched to the red, then to the blue, and red, and back again. Nikko sat in my lap in front of the mirror, tolerated the orange Home Depot hat on his head, and sat still during songs while he peered at himself in the mirror. Both boys liked looking at pictures of planes, which was the theme of the day. Neither boy sat still long enough for the craft, which was coloring in a a plane, but they both sat during snack time (Ronin had crackers I brought, and juice) and both enjoyed the parachute. During the play times, Nikko did some stimming back and forth in the room but he also came across some of the vehicle puzzles and tried to fit the pieces back in. There was a That's Not My Train book that looked cool that I should try to find on Amazon.

We got home and I had to change diapers before Peter came for Ronin's therapy. Nikko left them alone for the most part and intervened only when he was curious about a picture book or for Grover parts. I got a call during therapy and when I listened to the message later I found out it was the school nurse asking for some health forms before Nikko's IEP meeting tomorrow. I cringed because I forgot to drop this off earlier in the day. Now I had to pack the kids in the Pilot for an extra trip just to drop off this paper, and I'd have to unload them at the school just to march in 100ft to a counter and then back out. I called Atz and asked her sheepishly if it would be wrong to leave the kids in the car while I ran into the school. She laughed out really loud and I took it to mean YEAH, IT WOULD BE WRONG. And probably illegal. Ok, ok. I figured she's the queen of kiddies so I'd ask. I'm learning here! :P I thought I could couple it with a trip to IKEA so right after lunch that's exactly what happened. Westbrook school dropoff was simple, albeit cumbersome. The kiddies fell asleep on the way to IKEA, which was fine because they all needed a nap. When I got there, I saw one of the car carts in the dock area and kept an eye on it. When I parked the car, I stopped and thought: How in the heck am I supposed to get the kids into a car cart when we are parked more than 400 yards away from the curb? And when we'd leave, how would I unload these kids into the car from so far away?? I thought it might be easy, but you aren't allowed to take the carts out of the docking areas. No carts can go right up to your car. So, I had to abandon my plan of shopping at IKEA, even though I really wanted Ronin to sit in the car part because he'd love it. I went home and let the boys run around the driveway. Instead, they both stood in the middle of the patio, looking up at the sky. There weren't any planes around, and I urged them to start running around before the overcast sky rained upon us. It was weird, as if they were looking for a UFO or something. Then it started to rain so I scrambled to get the baby gate back from the front door area of the driveway, put the Little Tikes car, tricycle, stroller and garden equipment away, put Audrey inside and then go back to shuffle the two dumbstruck boys inside. Ronin started saying, "Water? Water? Water?" when I told him we were getting wet with water. The rest of the afternoon was a Hi-5 afternoon, but I started a Space Bag project with our winter clothes and some boys' clothes. Nikko spent his time watching Hi-5 and imitating Karla do jumping jacks by waving his arms. He also took one of the picture schedule boards that Anna laminated for me and kept it to himself for lining-up purposes. I didn't mess with it today, but tomorrow it will hopefully be a functioning board. Tomorrow is Nikko's IEP meeting and I am nervous, of course, because I don't want to miss any details of the goals we'll have to set for Nikko to reach.

Ollie has posted on FB that she'll be running the half-marathon on Aug 2 and she'll be doing it for Organization for Autism Research (OAR), and she's doing it on behalf of Nikko and me. I am so touched and humbled by that. She's going to be training for this, running early in the a.m. or when she has free time, making sacrifices, and for a good cause. I'll do whatever it takes to haul my family over to watch her run!

Just a little soapbox standing, here

Our morning was short because we had to leave before lunch to attend a joint graduation party in Hinsdale. It took place in a gymnasium that had seating on an upper level. Tables were set up and it was buffet style. When we arrived and parked down the street, we put the kids in the double stroller and walked up to the school. We passed by a playground and Nikko went ballistic. He wanted to play there so bad and he was tantruming in his seat. I gave him some fruit snacks but he was still angry. He continued his tirade as we walked into the school and I plugged him with more fruit snacks to settle him down. We met up with Denis' parents as well as Amy and Derwin. Lots of people were there, a lot of people with names I've forgotten but faces I knew. We got the edge of a table to sit and we let the boys free to be fed. Ronin sat with my MIL and Nikko hovered around Denis and some egg rolls. After eating I noticed that Nikko was running around the long banquet tables. I saw him pause and run lightly into some lady, but she patted his head and he took off again. It made me a little nervous because there were a lot of people and older kids milling about, but I could see him dart in and out and he was following the length of the tables. I looked away for a few seconds and when I turned back, I couldn't see him darting back and forth anymore. I got up to look for him and didn't see him at all. I walked through a small hallway that had stairs going up to the second level of bleacher seats where a lot of high school kids were sitting, but I went straight to see if he was wandering the hallway. I saw that the front doors were open and I got more nervous. I walked back inside and walked around the tables toward the back kitchen. I still hadn't seen him. Denis looked over at me from the edge of the table and I mouthed that I couldn't find Nikko and it's been a few minutes. I started calling his name and walking toward the hallway again in case he went outside, but I heard Ronin getting upset at the table. I saw him with our friend Dexter and told Ronin to hang tight for a second. My voice was kind of shaky because I was getting frantic that Nikko had not showed up. Then from the loud din of many people talking in a gymnasium I heard Nikko crying. I looked up and saw that he had climbed the stairs to the second level and he was crying because he was alone and didn't know where to go. I bolted toward the doors (I was wearing Audrey in the bjorn through all this; she was just enjoying the ride) and was ready to rush up the stairs when I saw Denis ahead of me in the stairwell looking up at Nikko through some railings, reaching out and Nikko climbing over the bars to safety. I was relieved, but also angry inside that this happened.

The gym was hustling and bustling with church people and strangers alike, but the real danger was that if you didn't keep an eye on Nikko, he could slip out of the room (which he did) and even go right outside and no one would stop him or question a little boy running excitedly outside because other little kids were doing it. He could go running into the street and get hit by a car, or fall down a hole like a window well, or walk somewhere unsteady and get hurt, and he will not be able to tell anyone his name or where his parents are because he has NO WORDS. This is the reality that keeps me from letting Nikko run unsupervised at any event we go to. If the people around him don't know him or know that he has autism, they will think he has the logic to stop before going into the street or know what is right and wrong. He doesn't. I am more comfortable with family members being around Nikko because they are all sensitive to him and his quirks, and everyone seems to look out for him, even inadvertently. Even though everyone on both sides of the families has their own children, when we are at functions together I always see that my brothers and sisters, their kids, and my brothers-in-law, sisters-in-law and their kids keep even the slightest eye on Nikko and help him from getting into trouble or danger. I am eternally grateful for that compassion, and I love all you guys for that, I really do!!!!!! For those who think I am being too possessive or dramatic about Nikko's safety and that I should be encouraging his independence, go walk a mile in my shoes. I try to encourage Nikko to be independent and give him opportunities to gain self-confidence in many little ways, and want him to flourish in playgroup and in upcoming preschool, but I am sensitive and aware that he does not process information the same way as a neurotypical child does and do not expect him to pick up everyday social and environmental cues right away. If something tragic were ever to happen to him just because I was feeling too lazy or too tired or too irritated to keep an eye on him at a busy function or unfamiliar place, I would NEVER forgive myself. It just takes one time to lose him. OK, gotta take a deep breath now, pause to get the laundry from the dryer, and calm down again........

I'm back. After the party we took the boys to the playground as promised. They had a wonderful albeit short time. Ronin got down and dirty in the sand and tried to climb on the jungle gym. Nikko ran back and forth between slides but took an interest in a rope ladder. He climbed it by himself very well. He also showed interest in a rope walk. Denis was by his side aiding him, but I could see Nikko's face from far away and he looked absolutely tickled and happy that he was trying something new. He took tentative steps on the rope walk but kept trying it even when other people were tromping on it trying to pass him. There were so many older kids running around, playing some stupid tag game on the jungle gym and making me nervous that they might step on Ronin's fingers or bump him off accidentally. I heard one boy mention to his friends that there were little kids there, so kudos to that kid wherever he is. We left (I had to lure Nikko away with fruit snacks), did a diaper change in the back of the Pilot, and headed home. Luisa and Dennis came by to drop off the swing set destined for the boys, and I am so beholden to them both. We'll have to work out a plan to put it together. I have to print out some reviews so I get an idea how to tackle it. I wonder which box has the directions. Hmmmm. One more thing to note tonight is that we were watching some Hi-5 episodes before dinner and there was a skit with this girl Karla who does exercises to get your body moving. She opened her arms out wide and wrapped them around herself, giving herself a big hug. She did this maybe three times, and I watched Nikko watch Karla. He imitated her by hugging himself, then he opened his arms out wide, then wrapped them around himself again. He wasn't even looking in a mirror. I love that he did that! Tomorrow we have playgroup, so I should get some of our stuff ready or I'll probably have a heart attack getting out the door again.

Preschool Evaluation

Nikko is doing something maddening lately. He is taking the fabric drawers in the cube shelving in the living room, dumping the contents (doesn't matter what's in them: toy figures, cars, blocks), taking the fabric board that gives the bottoms some shape and holding onto them for who knows what reasons, and taking the empty drawer and standing in them in front of the mirror wall. Great, not my intended use for that mirror wall, but glad he's enjoying looking at himself, flapping his arms, smiling, whatever. I'm angry about it because those fabric drawers, which are a little over $6 a drawer, are getting beat up and bent out of shape, but also the drawer contents are littering the floor, making the living room look like a pit as well as a hazard to walk through. Earlier I took the contents of one of the drawers and put them in a rubbermaid, so I don't have to keep picking the up off the floor. Nikko chose a different drawer later on, so I'll be throwing all those things in the rubbermaid later as well. I look forward to the day when he gets bored of this nuance and moves on to some other messy hobby.

After lunch was Nikko's evaluation at the Westbrook school. We arrived and Kathy Winters met us in the front office. She took us to the classroom where more teachers were waiting to play with Nikko. A social worker was asking me questions and Nikko wasn't being very compliant at all. Strange place, strangers yapping and trying to get him to do things, so no wonder he kept retreating to my lap. The saving grace were fruit snacks, which demonstrated how food motivated Nikko is. It's both good and bad to have the fruit snacks; they save me in a pinch, when a tantrum is tantamount. However, do I really want Nikko to be wanting fruit snacks all the time, or complying to directions only to be rewarded by fruit snacks? Of course not. The obvious tactic is to use them in moderation. Nikko is eager to get them, however, and when he sees the food bag he is always signing More. I tell him there are No More in the bag and wave him off. Similar to the Vitamin problem. Nikko did manage to get some things accomplished. He also had his vision tested and I watched proudly as he completed a matching puzzle smoothly. His stimming was very obvious as he looked up at the ceiling lights to avoid looking at everyone's eyes. But once I moved to the middle of the room where he could habitually check in with me the transitions were smoother and became less frequent. I am nervous that I won't be allowed to see him in school on his first day. I know the teachers will be handling multiple meltdowns, but wow, for him not to see me for a few hours and not know what's going on those first days will be scary. After the evaluation we went home because Luisa and Allie were hanging out with Ronin and Audrey. I pulled into the driveway and they were all hanging in the backyard, enjoying the beautiful weather. I let them all hang out for a little bit, but herded us inside to wash up so that Ronin could take his late nap. Nikko ended up napping between 5-6:30p. For dinner I gave him a little organic mac cheese but also heated up some seafood ravioli that he has tasted before. To my delight he ate everything I gave him. He got big hugs for that!

Tomorrow morning I am going to cash in on the massage/manicure/pedicure that Denis got me last year for Mother's Day. It's an early morning appointment, but I don't care, I'd be awake at 7:30 anyway. I am looking forward to a pleasant morning experience!!

Regression

I wonder if Nikko is using food as a power struggle with me. Even on simple mornings like this, he ate one or two bites of banana and refused the rest. He opted to eat dry cereal (multi-grain cheerios and cocoa krispies), chocolate milk and parts of my raisin bagel. Bo came 15 minutes early again, while I was trying to push some lunch on the kiddies. Nikko was picking at some leftover quesadilla. We went to the living room to work and it was a struggle in the beginning with Ronin, but Ronin spent some time looking out the window at cars so there was a little bit of respite. Nikko did all right with the puzzles at first. He helped put Elmo together but wanted to do it his own way. In fact, that was the theme of the DT session. He wanted to fish with the magnetic fish and fishing pole his own way. He wanted to have the tractor piece of the farm puzzle but we knew this already and hid it so he protested. Bo used bubbles today, which Ronin loved. Nikko was ok with bubbles and pursed his lips to the wand as if to blow. We did have many instances, however, of Nikko wanting to escape the corner. Bo took turns with me trying to sit him down, putting books in front of him and enticing him with sorting cups. I switched with Bo, letting her wrangle with him so that he would want to escape her and sit in my lap so we could work on something. Bo has a lot of patience and feels bad when kids cry, including Audrey, who was patiently watching everything. Bo is very good at pretending to play with characters with Nikko. She also supported my fears regarding the mac cheese.

After lunch I had to change diapers and pack the kids into the Pilot. All three fell asleep after ten minutes so I didn't rush to OT until 3ish. Nikko liked the obstacle course, but got involved with some little stacking benches that Shelly used once before as platforms. We had to haul him off and put them away, throwing Nikko in a huge struggling tantrum. We tried to calm him with play doh and he had a moment of peace, but wasn't convinced. Shelly brought out foam soap and a paintbrush but he wouldn't bite. She tried to swing him on the platform, this time not using rotary vestibular movement because she felt it increased his stimming visually, but instead swinging him back and forth. It didn't hold him for long, even with the mirror around. What finally got him back to earth was giving him fruit snacks. He became compliant immediately. I told Shelly today that after last night's tantrum at dinnertime, and feeling emotionally and physically drained from trying to calm him down with words and strokes for minutes at a time, I realized that Nikko wasn't going to immediately get better, turn a corner or improve quickly. I was going to have to learn how to cope with his autism for the rest of his life, and that meant having to be understanding, strong and calm while he tore into tantrums. Shelly reminded me that as he moves forward, he will regress at times and I will have to go back and remember how to help him through those times of regression. I have seen his stimming/crashing increase steadily over the past two weeks and it scares me that it's getting worse. Concurrently, he is starting to shake his head NO when he doesn't want something, is clarifying his wants when he signs More and is beginning to explore his environments in more productive ways. I felt a little depressed after coming to these conclusions, but I know that Nikko won't be tantruming and screaming and wanting fruit snacks forever.

We all stayed in the backyard when we came home, and I put the kiddies in the stroller (Audrey in the bjorn) and we went for a walk around a few blocks. The boys got dirty when we came back by going down the slide and running around all sweaty. This dirtiness was repeated later when Denis came home from work and took the boys outside while he worked out. They raked at the dirt on the driveway and were just nice and dirty coming inside. Boys.

No napping = tantrum

I am befuddled by Nikko's chicken nugget strike. He does not want to eat them, nor the grapes that go with it. In fact, he's not eating anything I've given him, consistently at that. He tasted some of the red kidney beans in the chili, and is definitely eating the bread rolls with Earth Balance butter, but that's not ideal for meals. I've hit up the cookbooks to try to find new things to make him. Yesterday the cheese quesadillas were a hit, but today they were a strike. What am I going to feed him tomorrow??

This morning Allie and Sabrina came over for me to babysit for an hour or two. The boys enjoyed their company and played around them, not really with them. At least the boys can tolerate their cousins even if they are older. The girls were very sweet to my boys, too. During Ronin's naptime I took Nikko outside to run around while Denis mowed the lawn. We had cool weather outside but it felt nice to me. I'm always hot. I lured him inside with fruit snacks. He continued watching the Signing Time DVD inside, but he didn't tire out for a nap until he was sitting at the dinner table. That's when he had a huge tantrum. I was trying to coax him to either eat or put his head down on the table to sleep, but he just wanted to rest it on my wrist. I had to feed Audrey so I moved away. Nikko was mad, so in the middle of the kitchen I picked him up to give him reassurance and hugs. He liked the view apparently, because when I put him down to go back to feeding Audrey he was demanding I go back to the middle of the kitchen, stand there and carry him. I wouldn't do it, and he flipped out. It was incredible hard to soothe him without losing my cool. I can't say that I didn't raise my voice, but I tried to calm down and be reassuring yet firm. Eventually he calmed down and walked away to see what Denis was eating by the kitchen sink, but the meltdown really took a lot of energy emotionally out of me. Tomorrow will be busy with DT and OT, without any Chinny. :(

Good speech day for Nikko

Sorry, missed a day. Yesterday morning was busy with Nikko's playgroup and Ronin's speech therapy. I woke up without the desire to get the kids ready to leave the house, but Denis urged me along and helped get our stuff together. I just needed a kick in the pants. It's a good thing we went, although we were late like the last time. I must aim to leave the house by 9a instead of 9:15, because there's obviously a 15 minute lag time. We sat in circle time and I did a little struggling with Nikko but I let him go while I stayed behind. He made his way around the room but managed to come back to the circle while we sang songs and Shirley showed pictures of vehicles. He picked a police hat for the hat song (which actually looked nice on him) and wore it for a nanosecond. Then the tambourine was being passed around. I held it in front of him, took his hand and started beating it. When I took my hand off he continued to beat the tambourine. Nice. After play time, we did a train craft where we [he] glued cutout wheels to a train and colored it with marker. Snack time was next and Nikko did a good job of signing More. We encouraged him to mix in Eat More. Overall it was good for him to be in playgroup because he got to play with different things (a school bus tent, drum sticks that he beat a drum with productively) and see how social other kids could be. Audrey behaved again, but got antsy at the end. I don't know how much longer she'll comply to being in the car seat. When I dropped off Ronin at daycare he cried and had to be carried off by the helper. When I picked him up, he didn't want to leave. We hurried home just in time for me to change a few diapers before Peter came for Ronin's speech therapy. It was a decent session where Peter began with corralling Ronin but ended up letting him roam around. That allowed Ronin to relax a bit more and be more functional with his speech. Nikko kept trying to crawl into the therapy corner, maybe because he was used to doing work/play there or was interested in the toys Peter pulled out for Ronin. But when Ronin was left to roam, Nikko left him alone.

As the day wore on, I decided to take the kids into the basement to run it out. We were there for a good hour, until Audrey got whiny from sitting by herself on the mats while I purged through some old rubbermaids. The boys had a different configuration downstairs because the A/C contractors were coming the next day and Denis had to move our crap from the utility room to the bigger room. There was a Nerf gun that had one dart missing, and I tried to show Nikko how to hold it. His low muscle tone in his arms didn't let him pull the triggers very well, so guess we'll have to do more climbing activities. We were watching Hi-5 and I saw him imitate one of the girls, Karla, raise her arms in the air. Nikko raised his arms in the air too. Interesting. I think Nikko started his chicken nugget strike during dinnertime, or was it lunch?

Today was speech. Gloria must have been in a good mood because she seemed enthusiastic with Nikko today. We started with the picture-to-real-object game again, using pictures of a toaster, bread and butter. Nikko originally put the toaster hand over hand, but the second time around he was able to put the bread in the toaster himself, and righted the bread as well instead of insert it upside down. He also did a good job with the puzzles she presented to him. Gloria was trying to see if Nikko was following directions verbally or visually. He seemed to be doing a combination of both, but visually still seemed to be dominant. For example, she'd ask him where a puzzle piece went (where's the cow?) and he'd scan the puzzle to fit the piece where it belonged. But he also seemed to fit the pieces because the shape fit, instead of identifying that the cow was the cow or the man was the man. He shook his head vehemently when he meant NO. We also had to break from the circle to try giving him some time to jump around. I held his hands and helped him jump on the couch like a trampoline (NOTE: we need to try to borrow the trampoline from Denis' folk's house. It's a good size, it's a one-person tramp so it won't let the kids go crazy, but maybe it's big enough for him to get his ya-yas out). But he seemed a bit more ramped up when we came back to the circle after letting him run his obstacle course. Gloria pointed out that knowing what times of day are better for him to jump or run would be key.

While the other two slept, I took Nikko with me to run some errands. The A/C guys were in the house all day anyway. We went to Target, Ulta 3 and IKEA. Nikko did really well holding my hand and not getting far away from me when walking places. He didn't bolt out the automatic doors of IKEA. He also wanted lots of fruit snacks, and I placated him to keep him happy. I thought it was really good for him to get out and see things and not rot at home on the couch. I'm trying to give him (as well as Ronin) the opportunity to walk places in public, holding my hand sometimes (like in parking lots) and walking solo as long as it looks safe. The day ended with him not eating real dinner. He's eating bread with butter and I hope this nugget strike won't last too long. Gotta get more Rhodes bread for him.

No more mac cheese

Am I overthinking the mac cheese thing? He hasn't had any since lunch tomorrow and I think I'm going to hold off on giving him any for a few days. I've had a weird feeling about his behavior the past few days, and today I feel it even more as I watched him run around today. He looks like he's just enjoying being outdoors or lining up his cars, but even more so today he was doing lots of lining up and he's been peering out of the corner of his eyes. A lot. It worries me a lot. I've been approaching him, getting into his face and having him avert his eyes purposefully. I've held his face still, by the chin, and still he won't meet my gaze. I have to call his name softly and sing-songy, and give him little tickles or strokes on his face to get him to look at me with clarity. He smiles all the while, but I tell him to come back to Planet Earth and get off Planet Nikko for a while. I'm just not happy seeing his eyes shift sideways so much. I think it has increased, and I think the mac cheese might have something to do with it. So far, it's the only variable that is different in his daily routine. The only other variable has been the appearance of the Signing Time DVDs. Hmmmmm.

The morning flew and before you knew it, it was time to put on socks and shoes to go to Wendie's housewarming party. We were late, of course. Her house is HUGE and they live in Streamwood. We got there and let the boys walk on the sidewalk, following us to the house. It's a nice experiment to see if they will follow or run away. They looked like ducklings following their mom. Nikko fortunately spent a lot of time playing with Ismael in the backyard. He seemed not to mind his company, maybe because he's been around Ish before. Both boys liked the fish tank in their sitting room. *Sigh* I guess I should really consider getting one. But I couldn't leave it in their bedroom. Can you imagine, when they start sharing a room, if there was a lonely, unprotected fish tank filled to the brim with WATER and LIVE FISH and LOTS OF GRAVEL just sitting within arm's reach on their dresser? The horror.

After Wendie's, we went to see the Creen Family, Denis' coworker, wife Gail and two girls, Riley and Samantha. They have a big, spring-less web-surrounded trampoline in their backyard. Nikko liked jumping on it and got the hang of it quickly. Ronin, however, didn't like it and sat in Denis' lap, refusing to jump. I think it was too wobbly for him. He preferred terra firma. Nikko also was obsessed over stick-like things again, and he got tired toward the end so we had to go. Even the presence of ice cream was short-lived. The kids have been waking up late the past few days and I have to get them back on schedule. If they are slow starters tomorrow, though, I might not go to playgroup. Personally I don't want to rush around to get all three kids out the door, but we'll see. I do want him to go to playgroup, but Ronin in daycare could be traumatic again. He has to go anyway if we go.