School Update

So where did I leave off?

Nikko turned seven in July. Wow. He's not a little toddler anymore. He's getting a little taller, more solid, more curious. He's also putting his hands down the front of his pants a lot. Someone told me to look out for early signs of puberty and I think I put my fingers in my ears and said, "Lalalalalalalalalalala!" I cannot fathom that next phase, so I'm going to shelve it for now.

He had summer school at the same place he'll be at for 2nd-5th grade, as well as the same teacher. She is pretty awesome. She is knowledgeable about autism and isn't scared or perplexed at Nikko's behaviors. Instead of asking me what they should do about them, she offers suggestions and seems proactive. We have had good correspondence via email thus far and I am so grateful. Nikko is in the SOAR (Structured Opportunities for Academics and Responsibilities) program. There are only five students in his classroom. One would call it an inclusion class. All I know is that it is the best environment thus far for Nikko to thrive. They take as many sensory breaks as he needs to help him come down from his meltdowns. They have a big sensory room with a Wii. They listen to Enya.

I'm also grateful for the two wonderful aides in his class. I've talked to them and they have the biggest hearts. For example, Nikko's been pretty picky with his lunches at school. He's not a cold food kind of kid. I looked high and low for a thermos that would sufficiently hold mac and cheese, not leak, and yet be hot. I thought I had success, but his refusal to eat it because it was "warm" became apparent. One day he told the aide, "Oven, please!" He wanted his food to be hot, so they did it. I started sending in a paper bowl with mac cheese and he's been mostly happy with that.

Upon exploring other heat-up food options, one of his aides said to me, "Don't worry, send anything in. We'll heat it up, it's absolutely no trouble."

"Ok, but I don't want to break the rules, like heat up food if you're not supposed to for other kids."

She shrugged her shoulders and said, "Our little guys don't need to follow the rules."

I loved her for that. They would do whatever they could to make the environment happy for those kids. Of course there is learning as well as discrete trials, and Nikko has had more green days than yellow days. But there are still yellow days, and he is a mystery at times. We've been working with each other to figure out things that trigger Nikko into meltdowns, but on some days I am resigned to admit that I just can't predict what Nikko is going to do anymore. Still, we'll keep trying and observing and hope he will get whatever is irking him out of his system more quickly each time.

His annual IEP meeting is next month and I am curious to hear what they are going to propose for his new goals. This year has been different in that Nikko never brought home any homework. I wasn't used to this, since last year he had spelling tests and a math worksheet that I'd battle with him to complete. His teacher is of the strong belief that the kids in her room work so hard every single day, focusing on the tasks at school, that they are most likely tired at the end of the day and should rest. I still pressed for something tangible and she helped make sure that Nikko had a math and a reading app on his iPad. Nikko isn't really thrilled to do any of the math, but we do it anyway. It's eye opening to work with him and feel helpless because he won't focus with me like he does at school. I'm fortunate that I can directly ask his teacher for pointers on how to go over a lesson. I'd like to mirror what they do at school to what should be done at home.

Learning how to work with Nikko's new team has not been a struggle. They are fantastic people. Learning how to adjust my expectations has been the biggest adjustment of all.

Say my name, say my name

A few times during the week, Nikko will wake up between 11:30pm-1:00am, bolt out of bed and come looking for me to put him back to bed. Last night I told my husband that I wanted to take a quick shower before Nikko woke up. As I prepared my bathroom stuff, I heard Nikko fling open his bedroom door. Denis said he'd go sit with Nikko so I could go shower, so I turned around and went back to my business. Throughout my shower I could hear Nikko crying and getting upset because I wasn't the one in the room with him. I heard Nikko reciting phrases from movies and whining. As I finished up in the bathroom I heard him say, "Mommy! Mommy! Mommy!"

That is the first time I have ever heard him call me Mommy independently, wanting me to come to him or needing my help. My heart softened and I hurried to relieve Denis so that I could be with Nikko to settle him back to sleep.

Nikko has said Mommy by rote when being prompted to say good bye, and he learned how to announce "MommyIgopoopoopotty" because that's the phrase I taught him to say when he ran toward the bathroom to do #2. And that's exactly how he says it, in one long sentence. But I felt differently when I heard him call out for me from the bedroom. It's been six years and I have never heard him call for me by name. Until last night. This is from a kid who does most of his talking during weekly speech therapy sessions, who can't tell me how his day at camp went, and who wanders back into his own little world while I try to pull him out long enough to get a few homework sheets completed.  Nikko saying "Mommy" was awesome because it means so much more than just one word: he verbally acknowledged my existence (that in of itself is huge), he knew what he wanted and expressed it with tone and feelings attached, he said Mommy instead of crying, whining or dropping to the floor in defiance, and he did something so neurotypical, so normal when he doesn't usually do what's normal or age appropriate.

I wonder when he'll say it again.

1st Grade Jungle Music Program

Tonight was Nikko’s 1^st grade school musical. Jungle Music was the theme. Nikko had to wear a bright colored solid t-shirt, black pants, black socks and black shoes. A trip to Target earlier in the week solved the black clothing and I was happy that he fit into a very nice pair of dress shoes (he outgrew the socks and shoes he wore a year ago in San Francisco). I didn’t know what to expect when we sat in the school gym waiting for the 1^st grade classes to line up on the bleachers. Mom and Dad made a trip out to see him and I was happy that they came. The teachers led the kids into the gym and I saw that Nikko was standing on the 2^nd tier of risers farthest away from us. I took my phone for pictures and video, got up and scurried to the other side of the room. Nikko saw me and constantly turned to look at me. I ended up standing right next to Mrs. McCarthy, which was one of Nikko’s teachers from Circle of Friends –and one of my favorite people.

I wondered if Nikko would wander away from his spot on the risers but he only took two or three side steps out of place and wandered back. His teachers were a few feet away looking out for him. Out of all the songs I heard on the program, I think I saw his mouth move to The Lion Sleeps Tonight. He would watch his peers to see what hand movements they were doing, if they were stomping their feet or if they were lifting up their masks to cover their faces. Nikko did some random arm movements of his own as well. I was surprised when he and a few other kids were shuffled to the very front and center of the group, holding egg-sized shakers. He didn’t bolt, didn’t jump around and didn’t deviate from the group. Victory!

And then… at the end of a song, since he was standing a foot away from a floor microphone, Nikko stepped forward and said into the microphone, “Hewww-wooooowww” in a low, hearty voice. I started laughing as did Mrs. McCarthy. That’s my boy! Luckily, Nikko didn’t continue to speak into the microphone and they were ushered back to the 2^nd tier.

After the performance, I went to retrieve Nikko from the classroom in which I dropped him off. He was sitting next to his classmate Matthew. When Matthew saw me, he immediately turned to Nikko, tapped him on the arm and urged him to go to me. Nikko wasn’t paying attention but Matthew was being helpful and stayed by his side. I was very touched so I thanked Matthew for being so nice to Nikko. It breaks my heart that Nikko won’t always have nice people around to help him out in chaotic situations, so I really try to thank those who do act nicely toward him. Matthew is a gem.

I was really happy with Nikko and his behavior in the musical. I was so proud that he was able to stay in place and mimic the movements. I am relieved that he didn’t get frustrated or anxious about anything and start to have a meltdown.  A little over 100 kids were in the musical and Nikko was the only one flapping his arms randomly. There was one other child that’s in Nikko’s special ed class that reflected some special needs as well, but it made me sad to know that Nikko stood out when he wasn’t paying attention to his peers. I am hoping that as he matures, he’ll want to participate more and develop the language necessary to form relationships. It was a great night for Nikko overall.  

Spontaneous speech moments

Today was an interesting day of speech for Nikko. He had a few bouts of spontaneous speech and appropriate phrasing while interacting with someone. This morning, Denis was saying good morning to Nikko and was putting his face directly in front of Nikko's. I could see that Nikko was feeling crowded by Denis' face and I heard Nikko say, "Help."

Later in the morning, Ronin was watching Super Mario clips on Youtube when Nikko came over and was pulling at the recharging cord. Ronin got frustrated and started whining that Nikko was trying to steal the iPod from him. Nikko looked at me and said, "Give it to me." [I had to tell Ronin to give up the iPod and negotiated computer time instead.]

Some time in the afternoon I was asking Nikko what he wanted to eat for snack. He hemmed and hawed, and then he whispered while tapping his fist on the chair three times: "I want Lucky Charms." [The fist-tapping is to emphasize each word in a sentence. He can handle three-word sentences right now, so we tap a surface three times to ask for things.]

Finally, I told Nikko that we were going to play outside. He then asked, "Play in sand?" I told him we would definitely be playing in the sand. He was satisfied and eager to get out of the house.

Happy 6th Birthday, Nikko!

Nikko turns six years old tomorrow. After his OT at 9am I plan to first give haircuts (hopefully) and then take the kids to mom's house for lunch. The following is a ramble, with no clear objective other than to talk about Nikko.

He has grown up a lot this past year, and he survived Kindergarten better than I expected. He learned how to write his first and last name. His speech has improved overall. Nikko can ask for certain preferred things, or namely, food. He can also say NO very emphatically, whereas last year he wasn't able to utilize this skill. He is almost potty-trained, and that's a big thing for the entire family. #1s are good, #2s are still a work in progress. He's still missing the verbal component of telling me he needs to go to the bathroom. He'll just go off and start his business! He's smart and funny, innocent and mischievous. He gets into routines to a fault, but can manage transitions between activities much better than last year. Nikko's stronger, too, which means I have to be stronger than him. Eating habits have not improved much, as he remains picky about his food choices. But he is open to eating grapes and sometimes an apple, and this is important for snack times at school. I am so anxious about him moving into first grade. I think I'll always be anxious for him. He has come really far, and has further to go still. I have come to accept that Nikko will always stand out among his peers, but that being just like them is not the best thing for him. I want Nikko to be HAPPY. I want him to be able to communicate with other kids, and to play with them. I want others to see his goodness and not stare at him for making loud, squealing noises or running up and down hallways, stimming off the baseboards. I get weepy thinking about what he would have been like had he not had autism. But since that's not going away anytime soon, I swiftly kick myself in the butt and move on. He's got a life to live and I'm going to do everything I can to make him enjoy it.

Summer Camp starts

The summer has officially begun, and it's a busy one for the kiddos. Ronin & Audrey will be in a day camp 2x/week from 9:45a-1:15p. Ronin will also have gymnastics on Thursday mornings. Nikko will participate in the NWSRA's summer camp for the first half of the summer, MWF from 9a-2:45p. He will be taking summer school for the last half of the summer, M-Th from 8:45a-11:15a. Nikko's private ST and OT are dispersed throughout the summer as his schedule will allow. Finally, we are attempting to join a playgroup of Ronin's classmates that meets Tuesdays and Thursdays. VERY BUSY.

Today was Nikko's first day at the NWSRA camp and with a new counselor. We call him Mr. Tom, but he is a junior in college and this is his second year as a camp counselor. We got to meet him at last week's orientation. Even though I talked at length about Nikko's behavior and needs, I still had to jot down some notes and gave Tom a cheat sheet just in case. Some things I noted:
-Picture Schedule. He's very visual.
-Nikko can follow basic sign language.
-Nikko follows the FIRST _____, THEN _____ concept well, especially for transitions.
-Hard for him to pay attention and follow GROUP commands. 1:1 is better but can be improved upon.
-He can't/won't tell you when he needs to pee, so take him to the bathroom regularly. Make him go, even if he initially says no.

I was nervous dropping Nikko off because he was immediately covering his eyes and scripting garbled mumbo jumbo. I didn't want Tom to think he was a messed up kid! But when we picked Nikko up, he came out wearing a big, yellow construction paper crown and holding a foil-covered star wand. Nikko was in good spirits and apparently had a great day. He ate his lunch and snacks, loved the fountain feature at the water park, and went to the bathroom when instructed. Nikko wasn't upset or anxious when I saw him. I'll have to remind Tom to alert me if Nikko had any difficulties throughout the day, even if he had minor meltdowns. It's important for me to know this so that I can figure out ways to avoid triggers. Overall, I'm very happy that Nikko was able to walk away (albeit covering his eyes) with Tom, who was a complete stranger except for one brief meeting, and spend the entire day in a different environment.

Successful visits & spaghetti

Yesterday, I heard the toilet seat go "clink" and immediately knew that Nikko was there. He was poised and ready to sit on the toilet. I praised him for coming on his own, helped him sit down and then he proceeded to take a dump. Then he looked up and said, "All finished." It was the most normal poo-poo potty visit he's ever had, except that he didn't verbalize anything prior to his visit. I watch Nikko constantly between potty visits to see if he is straining, and I saw him hunched over with legs crossed about two hours prior to the potty visit. I kept asking if he wanted to go poo-poo potty and he kept saying no. I even put him on the toilet for 10 minutes after homework, adhering to our routine, but he still didn't go. I guess he actually went when he felt ready to go, which is ideal, but we need to work on him telling us that he needs to go to the bathroom.

One other recent development is his appreciation for spaghetti. Probably over a year ago, Nikko enjoyed some spaghetti at a relative's house and I hadn't been able to replicate it. It was simple noodles with red sauce and hot dogs. When I tried to make my own spaghetti, rich with chunky tomatoes, garlic and onions, he wouldn't eat it. So I believe it was back in December while at a church reception he divulged in a plate of spaghetti and tomato (red) sauce and loved it. It happened again at a playdate at his cousin's house. And so a few days ago I attempted spaghetti with him again, using a jar of 365 Organic Pasta Sauce from Whole Foods. Well color me purple, but Nikko loves it and has requested it for every meal for two days (except breakfast). The problem? I just ran out of sauce! I have to make a trip to Whole Foods tomorrow, OR get another brand, but I don't want to jinx our good luck, know what I mean? One more nice thing is that Nikko also does the sign for spaghetti just like he learned it watching Signing Time. It's like taking your pinky fingers and twirling long noodles of spaghetti. Very cute to watch. :)