Nikko still seems to like going to school. I'm still wary about his progress, and will continue to be that way until the parent-teacher conference in November (think flashback to last year, when his deteriorating progress was unveiled at the meeting). I've been kept in the loop with very detailed daily reports from Mandy, and that eases some fears. Two days ago I started getting Discrete Trial Daily Reports, plus the ABA binder came back home. The timing was perfect, because I was just beginning to wonder if they had begun Discrete Trials at school yet. This is supposed to be the ABA school-version that Nikko needs. So it took over a month to implement... OK, I'll let that go since his sped teacher is fairly new. I really hope to see progress, after they make their abilities assessments.

Four days a week, Nikko has homework from his regular K class. It is writing letters. He HATES to write. After his snack at home, I sit and do his homework. For the past month I have been trying to be cheerful while assisting him, mostly hand-over-hand, to hold a crayon and write 5 repetitions of a letter. He doesn't put much force into holding that crayon. And many days he'll start to squeal in protest, so much that I just want to be finished with it. But today I saw something interesting. His homework was to write the lowercase form of the letters from a to t. I looked at the blank lines and decided to help Nikko by dotting the outline of each letter, so he'd just have to trace it. I was pretty sure that if I told Nikko to start drawing a lowercase "a", he couldn't do it. I gave Nikko a crayon, stood behind his chair as usual, and told him it was homework time, that he had to draw letters. I lightly held my hand over his, but let him apply the pressure as he traced each letter. And he did them all. Except for the m and n, which he was getting careless about, but honestly he made purposeful hand strokes with the crayon over each letter. That showed me he was cognizant about the task, and could complete it with a little help (dotting the outlines of the letters). Good boy.

The bad part about school, lately, is the attention span. This is going to be an ongoing problem for him. Keeping him interested in non-preferred activities. What works is the First/Then technique, and then reinforcing him with things that he really likes (cars, trains, figurines). I'm going to have to remind his sped teacher about that again.

We had a dinner playdate yesterday with three other kids close in age as mine, at their house (I'm friends with the mom). Nikko was clingy to me in the beginning and I really had to push him off to get interested in playing with the multitude of tracks and trains. The girls played with each other nicely, and Ronin was content with the Cars 2 toys. Nikko got used to running a GeoTrax train over some bridges, but didn't seek out company, nor did he try to talk to the kids around him. Nikko was, of course, in his own world. The one thing that got him moving around was when the boys took some foam swords and ran around the house. Nikko likes to "play" chase with Ronin and Audrey around our house as well, so I encouraged him to go chase his friends [with a sword. Oy vay!].

During dinner, while everyone was eating mac cheese (except Ronin), the girl said to me, "Does he talk?" She pointed to Nikko.

"No, not really," I replied.

"Why?"

I said, "Nikko has a hard time learning to talk. He's not as good as it as you guys are. But he can learn and get better at it if you guys keep talking to him." I was starting to explain how his brain was wired differently, but that explanation was going to get lost on them so I left it at that.

So there it is again in a nutshell. Attention span, and expressive language. Help, please.

Mini catch-up

Oh MY. Has it really been so long since I've written an entry? SO very sorry. I guess I just got busy with juggling the kids' schedules. Let's update, shall we? My biggest fear going into the fall was the communication component between parents and teachers, especially regarding the extended day program. I can't say the beginning wasn't rough regarding communication. There wasn't an immediate, formal introduction of the special ed teacher to the parents. Instead, he took some time to acclimate and then put out a letter at the end of the first week of school. Meanwhile, I took the opportunity to communicate via email with the teacher and ask questions that I needed answered. My latest question was about the November parent-teacher conferences of which I am not formally scheduled to meet with the sped teacher. He said he'll get back to me with more direction on that. Nikko's schedule is as follows: 8:55a Wait for bus pick-up 9:20a School begins 4:15p Nikko's bus drops him off across the street from the house. Simple, right? He's gone all day. He has the extended support program from 9:20 - 11:50, has lunch and recess, and then continues with the regular Kindergarten class from 1:20-3:50. The best part is that Nikko has an aide. She is shared in the morning with the ESP group, but in the afternoon Nikko has a 1:1. Her name is Mandy but we call her Mrs. S. I find that communicating through her is key to staying on top of Nikko's progress. She has been really detailed about Nikko's day, especially his eating habits, and I am eternally grateful. Nikko seems to be doing ok overall, but his attention span and focus are challenged in the afternoon. I figured this might happen. It's only been a few weeks so I want to be more supported in any observations. I make Nikko do "homework" right after he finishes his snack when he comes home in the afternoon. For some reason I really just want to get it out of the way. And feeding the boy at lunchtime is challenging in of itself. I pack him a lunch Monday through Thursday, and have to include two fruits or veggies for his morning and afternoon snack. Coming from a boy who'd rather inhale Pirate Booty or is happy with his goldfish crackers, it's really HARD to get him to eat stuff. I also really, really hope that the school is working on his IEP goals. I just got a notice today that the OT is switching for his class, that he'll work with Mrs. I. Again. YEA!!

Sans ABA / The Dental Visit

We finished with private ABA last Tuesday. After another session where he wasn't focused and seemed to be consciously deciding NOT to do what Rebecca was asking of him, I told her that we were going to take a break from ABA due to the school year starting up again. With Nikko going full days, plus a double dose of OT and ST on Friday mornings, we need to see how he will be able to handle the added hours. The school should be providing discrete trials in some form as well, thus reducing ABA hours. We'll see how it goes, and then revisit the idea of ABA in the winter.

On Thursday I took the brood to see the Dentist for the first time. We found this pediatric dentistry practice through Jenna, whose mom is a receptionist there. Kids Plus Pediatric Dentistry is the place and it's really kid-friendly. The staff was excellent and familiar with special needs kiddos. I had to have Nikko in my lap facing me, then we bent him back so his head was resting in the lap of the hygienist/dentist. Jenna's mom was so terrific that she put on the movie UP, which played on all the TVs in the place. That movie helped calm Nikko a little bit, who was thrashing and crying and wailing all in his efforts to get away from me. Thank goodness I have a little more strength to restrain him! The dentist didn't come across any cavities, but she also gave us a disposable flosser so that I might try to floss Nikko's teeth and put some spacing between them. Many stickers later, all my kids came out as happy campers even though the trip was only for Nikko.

Nikko starts school officially on Thursday. On Wednesday is the Garden Walk "Open House" where I have a list of questions growing for the regular K teacher along with the SN teacher, whoever that may be. I am in denial, still!

The Great Wolf Lodge (aka Wave Pool)

On Monday and Tuesday we took the kids to the Great Wolf Lodge in Wisconsin Dells for an overnight trip. We planned to meet up with Denis' coworker's family and hang out for the day. The trip to the Dells was three hours and the kids did amazingly well in the car. Thank goodness for the DVD player! They also slept part of the way, ensuring that they would have a late night afterward. Nikko didn't fuss or whine, just sat quietly in his chair watching whatever his siblings subjected him to (Thomas the Tank engine or Ice Age or The Wiggles). We arrived around 6:30pm and went to dinner. There was a little bit of time left to try out the water park amenities until the 9pm closing time. The kids loved the splash pads, but Nikko's true love was the wave pool. He let out some terrible cries when it was time to vacate the park, but it couldn't be helped. As I mentioned before, the kids fell asleep by 10:30p and not without me having to lay down with each of them to quiet their restless souls. After breakfast the next day, we were pretty much glued to the wave pool. Denis took the kids to the other slides, but one of us was always near Nikko.

If ever there was an activity that was the ideal sensory stimulator for Nikko, I would now peg it as the wave pool. What better way for him to be completely immersed in water, plus have the added benefit of waves crashing into his body with lots of force? Nikko tried to doggy paddle through the waves and I swear he is getting better at teaching himself how to swim. Every five minutes or so, the waves would stop and then start up again. The alarm preceding the waves was a recorded wolf howl. Nikko learned that whenever he heard the howl, the waves would start. And so when the waves stopped, he would swim over to Denis or me, look at us expectantly and howl. We joked that we should record the wolf howl and play it back every time we wanted Nikko to do something for us! Nikko picked up on conquering the waves rather quickly, timing his jumps with each rise. He never looked tired. NEVER. Nikko was truly in his own element. We couldn't get him to take a break for food or juice. The only thing that worked was for me to pick him up and drag him to the table, immediately shoving pizza into his face so he would see it and start eating. That's really what it took. Taking a break just wasn't an option for him. Toward the end of the day Nikko managed to run to the table a few times, grab a bite of leftover pizza, and come running back to the wave pool with crust shoved into his mouth. I don't think Nikko really looked for either Denis or myself when he was in the wave pool, I don't think he cared if we were nearby, and I don't think he cared about anything at all except the waves and the next wolf howl.

Leaving time was challenging. We had to take each kid to the showers one by one, and Nikko was last of course. He protested angrily, crying and yelling and thrashing. I was able to give him lollipops to settle down, and when he was able to sit still in a chair I could see the fatigue start to drift over his face. Nikko had been in the wave pool for almost six hours and he sported red blisters under his big toes from bouncing in the waves. He also swallowed quite a bit of water because he started coughing intermittently. Today he was sniffly and mellow so I warned the camp staff that he may not be compliant. Thankfully, I got a good report that he had a great day.

Play To Talk

Karen, Nikko's speech therapist on Thursdays, recommended a book called Play To Talk; A Practical Guide to Help Your Late-Talking Child Join the Conversation by James MacDonald Ph.D. & Pam Stoika Ph.D. It's good reading but slow reading for me. It centers around the Communication Partners strategies (won't list them all here, kind of complex to describe) of playing/communicating/interacting more and talking less so that the child will learn to talk more. I'm almost halfway through the book and do intend to finish it. Examples of what the book reviews is matching Nikko's word output and giving him one more word to build on/build vocabulary; letting Nikko take the lead during play, sometimes take the lead myself, but always match the power; and entering his world of play instead of pushing him to meet MY agenda. Sounds easy, right?

Earlier today, before therapy, I saw Nikko siting on the couch, watching TV and playing with a plastic pterodactyl, making it say "Tweet tweet". Thinking I could easily join him in constructive play, I took a red, plush Angry Bird and sat next to Nikko. I put the Angry Bird next to the pterodactyl and said, "Caw caw!" I tilted my Angry Bird toward Nikko's bird and playfully pecked the bird's beaks. Without even looking at the birds, Nikko picked up my Angry Bird from my hand and tossed it over his shoulder. There I sat, without a bird, and my mind went blank. I think the word "DUH" was written on my forehead. Now what? I seriously didn't know what to do next. Ronin came by and was bugging me about the Angry Bird so I told him to go away so I could play with Nikko. But the moment had passed and Nikko had zero interest in playing with me, so I sheepishly walked away.

When I told Karen about this [lack of] interaction, she applauded me for trying a technique, then told me some ways I could try to engage him in the future. Since I no longer had a bird, I could have tried paying attention to HIS bird. I could have tried to pet the pterodactyl. Or I could have pretended to be a bird myself. She pointed out that the challenge is to react quickly and keep building on the situation even though he won't engage. IT WAS HARD, I won't lie. But the more I keep trying, hopefully the better I'll get at this. Gotta read more of the book!

NWSRA Camp

This morning I put the kids in the Pilot and headed out toward Prince of Peace church to take Nikko to his first NWSRA camp. He'll be in it M/W/F for the next three weeks. I have been very nervous about making sure his backpack has everything on their detailed list, all his items labelled, his lunch (ok, it's a Lunchable) and snack packed, pull-ups and wipes together, and swim gear assembled. Remember that Nikko had missed last week's camp days because he was in that training class, so I haven't communicated with the NWSRA people for two weeks. We entered a gymnasium to meet up with the aides and I was thrown a little loop when Debbie (the psych) told me that Sam wasn't going to be Nikko's aide. Instead, it was a girl named Michelle who was running late. When I met her, she was a blonde girl, probably in college, and was very polite but didn't ask anything complicated other than did Nikko have any food allergies. Another boy, middle school maybe, was a volunteer assigned to help Michelle with Nikko and her two other charges, a boy named Colin and another kid that I didn't meet. In the gym, when it was time to go, I knelt down and said to Nikko, "Bye Nikko, see you later, have fun!" He leaned in to give me a kiss, then promptly turned around and started walking toward the door, grabbing Michelle's hand when she offered it.

And that was it!

I was surprised that Nikko didn't linger, didn't look back, and didn't have any resistance or a meltdown. I just handed Nikko off to a complete stranger and he didn't even know what he was walking into. When I look at the grand scheme of things as of late, it seems that Nikko has been very open to being outside of his home environment, even open to trying new things. And all along I thought he'd just be clingy on me. I should have remembered that he transitioned into ESY well, and that he had only a tiny bit of whining on the bus to the Illinois Experiential Training camp, for one morning. Their day included a field trip to Pirate's Cove in Elmhurst, then ended with time at Eagle Pool. We met the NWSRA team at the playground next to the pool and I let the other kids play on the apparatus since they have been cooped up inside all day with me. We were the last to leave, and ended up staying for a little snack before heading back. I really hope Nikko continues to have a successful camp experience. I also wonder what the plan will be when it rains.

High pain tolerance

Nikko spent the morning of his birthday at that Illinois Experiential Program for Autism. This was his report today:

Nikko had an exceptional day today! He was greeted at the door with a "birthday boy" crown, too! Nikko has started to show his wants using a sentence strip that includes choices of preferred items. He also says, "I want_____" when constructing his phrases! Nikko excelled at a series of 10 new activities that assessed academic skills, life skills, sorting, matching, constructing and proper use of school supplies. Nikko is quite the cutter. :)

Nikko also had a blast playing in the water table! What a fun way to beat the heat!

I am very interested to see if I get a report at the end of the week regarding his progress.

In the afternoon, Denis came home early and we packed the kids into the Pilot to head out to the Wheeling Park District pool. It was at least 100 degrees outside today, so cooling off at the pool was the alternative to staying at home. It is also Nikko's preferred activity of all time. We were there for almost three hours. Toward the end, the kids wanted to play in the "playground" which was really the splash pad with slides and a huge water-dumping bucket. Nikko ran around quickly and took a spill at one point. I saw him fall at least twice but bounded up quickly. It wasn't until the third time around that I noticed Nikko kept stopping to touch his ankle. We went to inspect him and found the skin on part of his ankle and along his shin was scraped and bleeding. Time to go home! Denis took Nikko to First Aid where they cleaned the wounds and put two square band aids on them. I wondered if Nikko would rip them off right away but this time he seemed to accept the bandages. Nikko has a high pain tolerance and had I not scrutinized his behavior at the splash pad then I would not have noticed that he was mildly disturbed by something on his ankle.

After dinner this evening he came up to me and said, "Take it off" in reference to the bandages, but I refused him politely and shuffled him to his birthday cake. The kids and I had picked out a Thomas the Tank Engine Duplo blocks set, which mirrored the Sodor Island Fair set we already owned, so this ended up being in the win column. I think he'll be looking forward to playing with it the minute he wakes up tomorrow.

Speaking of tomorrow, we have an extremely busy day. Nikko goes to school in the morning by 8:55a. From 10-11am I have to take Ronin and Audrey to their last camp class. We're homebound until Nikko comes home at 1:45pm, and then at 2:30 we'll pack up the car and head out to Speech from 3-4pm. Then I'll have to shuffle the kiddos to Arlington Pediatrics before 5pm for Nikko and Audrey's annual physicals. I have to remember to pack the electronic games and the DVD player before heading out to speech!