Under the wire

Here we are, on the verge of the new year, and I wanted to squeak one blog post to make up for the lag.

Nikko has been doing ok in school. He has a great aide. He doesn't NOT like going. There were a few sick days, but overall I think Nikko enjoys getting on the bus and being in a different environment during the day. I didn't know if he'd last a full day at school, but aside from some instances of slight afternoon crankiness I think he is able to handle it. I worried about lunchtime but his special ed class eats in the special ed room instead of the big lunchroom. I wondered if I should balk at that idea but really it's fine with me that he eats among peers.

Nikko can write his name. THAT is amazing. It's an IEP goal that the OT has been working hard on helping him achieve. It's not perfect, especially the K's, but on command he is able to write those letters and it warms my heart. In fact, Nikko is able to write other letters as well, just not all at once. Every day after Nikko walks into the house and has snack, I sit him down and we do his homework. This involves writing a letter or a number five times. There are other commands such as putting the appropriate letter in the beginning or the end of the word, and I'm pretty sure Nikko doesn't understand that concept, but we do the best we can. He is able to count by rote, and at home he can go as high as 30. Nikko does discrete trials twice a day at school and I get to read his progress on the sheets sent home daily. The aide does a great job of documenting. I have to get my butt into gear and file away the past month's sheets, that's for sure. Alas, paper is not a stranger in this house.

Nikko still goes to private OT and ST on Friday mornings. Today the OT said that he has improved in terms of tolerance. Every time they do an activity he is learning to try something instead of just blow up. He's also been saying NO and YES more frequently at home when I ask him to go to the bathroom or if he has to choose between two things. THAT is amazing. I don't get an answer all the time, but many times he is able to vocalize a NO. I had the opportunity to sit in on a speech session and watching him make choices, say letters and put them in the appropriate slots, and sustain attention during tasks was very rewarding to me. I almost wish I wasn't observing because I didn't want to waste his session with my presence, as was evidenced in the beginning of that session where he refused to sit in an exercise saucer. The ST spent a considerable amount of time negotiating his tolerance, and she eventually got him to at least touch the center of the saucer instead of sit in it.

I think it's highly important for Nikko to be in these private sessions, especially because his ST BELIEVES in him. She never gives up on Nikko. She sees a ton of potential in him and works hard to coax it out of him. I find her work more encouraging than the feedback I got during his parent-teacher conference, unfortunately. While he has some very committed folks on his school team, I am not entirely confident that some of them believe in Nikko's abilities. One example is that of the school speech therapist. She warned me that Nikko's speech goals in his IEP are extremely high, and she didn't want me to be disappointed come IEP review time if his goals weren't met. When I asked her what she was doing to help him meet his goals, she gave me a non-answer of "Well, we're doing the best we can and we'll keep trying." Not a lot of confidence there.

Despite my reservations, I am giving the school a chance to help Nikko. I am really grateful that Mrs. I was reassigned to be Nikko's school OT again, because she worked with him last year and is able to gently push Nikko forward. The fact that he can write his name is proof of her hard work, in my opinion. Nikko's IEP meeting is at the end of January. I will be spending the weeks beforehand pouring over his discrete trials and matching them up to his current goals.

Elsewhere, Nikko still has night wakings. He is put to bed between 8:30-8:45pm with melatonin. If he's tired, it works like a charm. If he's not quite tired, it may take a little bit longer for him to hit slumber in a darkened room. I am perched at the side of his bed singing him to sleep, by the way. Once he falls asleep, I get at least 3-4 hours of quiet time until I am on my guard for a night waking. Sometimes it happens before I hit the hay; sometimes it happens after. He's been on winter break for two weeks and his potty training has gone somewhat south. I hope that once school starts again, he'll be back on schedule with wanting to pee in the toilet instead of in his pull-up. Grrrr.

Well, gotta get some sleep. Happy New Year! I want to be more consistent with blogging in 2012, so let me get on it!

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.