Tuesday, July 26, 2011


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.

Thursday, July 21, 2011

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!

Tuesday, July 19, 2011

Busy July

I've been pretty absent about blogging lately. It's been a busy month. After Nikko's ESY class ended, he had two weeks off before starting up with the second round of camps. He's participating in something called the Illinois Experiential Program for Autism every day this week. Sponsored by the NSSEO (Northwest Suburban Special Education Organization) it's basically a program where they train other educators/teachers on autism and the kids participating are the guinea pigs. We heard it was a great experience for the kids because they get all this attention from professionals and they could even shed some light on behavioral issues. It's day two and so far Nikko is rolling with the punches. He was upset and whining when first getting buckled in on the bus yesterday, but today he willingly got into his seat and was ok with me pulling the seat belt tight. I was a little freaked out because he was sitting with a lap belt on instead of a harness. The bus driver couldn't seem to give me an explanation as to why Nikko didn't get to wear a harness. Luckily for the driver, Nikko stayed in his seat the entire trip, but he managed to wriggle out of his seat belt. (Sigh)

After this week of training, Nikko will continue with his NWSRA camp, 3 days/week. I'm looking forward to his experience at this camp because he'll be having FUN, going swimming and just being around other people that know how to handle kids like him. I met Sam, his aide, and feel comfortable knowing that Nikko will have a guy showing him around. I just hope Sam will remember to change Nikko's diaper as needed.

Finally, it's important to note that this is the eve before Nikko's fifth birthday. I read back to my entry one year ago and Nikko was at the beginning stages of being verbal. It makes a world of difference to be able to hear his voice! Just today, when in the basement with Rebecca the ABA therapist, Nikko was scripting from one of the Signing Time DVDs. He was talking about the signs for Grandmother ("Just like the sign for Mom, but it moves forward) and Grandfather. I remarked aloud, "It's kind of neat to hear him scripting, because I think that must be how his voice would sound like if he were having regular conversations." For a split second I suddenly felt so very sad that Nikko wasn't actually HAVING conversations but was just repeating things he heard from another source. I had to shake it off, however, and just be grateful that Nikko has the capacity to talk, if not the motivation. His overall communication abilities has improved over the past year, using gestures, signs and broken speech (don't forget the whining) to communicate if he wants something.

And Nikko's been a very happy camper, especially when we head out to the park district pool. He is truly in a better place when he's in the water. We hope to take the kids to the pool tomorrow, since that is Nikko's most favorite activity. Happy birthday, Nikko!

Friday, July 8, 2011

More Nikko

It's not that there hasn't been anything going on with Nikko lately; I have not been able to carve out the time to blog. Shame shame shame! But I'll give snippets where I can.

Yesterday while going to bed my arms felt extremely tired, as if I had lifted a ton of weight while working out. The problem was that I didn't lift that evening, just ran cardio (and Jillian Michaels Shred). I realized that my arms were tired from restraining Nikko in the eye doctor's chair in the afternoon. It was his first eye exam ever and I was very anxious about how it would turn out. Armed with the iPod Touch and lollipops, we arrived late and were serviced late as to be expected. The ophthalmologist was Dr. Anderson and she was a very calm, soft-voiced, kind-hearted person. Nikko sat in my lap unwillingly for the first two minutes, and then he really started thrashing when I had to cross his arms and hold them tight while she put eye drops in his eyes to dilate the pupils. This would take around 30 minutes. When we came back to the chair, Nikko was whining and trying to pull away from my grip. I was able to hold him somewhat still while she used lenses and a flashlight to shine and look through to the backs of his eyeballs. Luckily, he doesn't need to wear glasses and we can come back in two years. Hooray! And next, I've got to prepare him somehow for a visit to the dentist next month. Or maybe I should lift weights and improve my upper-body strength to deal with the restraint I'll need for the dentist. How in the heck are they going to keep his mouth open for this?

This morning, before I changed Nikko's diaper, he came up to me and said, "Go pee pee in potty?" I took him to the bathroom, got him on the toilet, and didn't think he'd really do anything. He didn't pee. But he did eek out a little bit of poo. Hooray! I didn't notice this until after he got up, so his potty song was ill-timed. Still, I thought that was a good effort on Nikko's part. Not repeated for the rest of the day, however. I think the correlation is there, but this inability to have more solid bm's is delaying the potty training.

Nikko was approved for OT services at Arlington Pediatric Therapy. Hooray! It will start next week on Fridays with the same OT who did the evaluation on him. Another nice lady named Karen. Our insurance will run out within the next two sessions and we'll continue for the rest of the summer to see if OT makes any improvements. If so, I might consider dropping speech so that he can make improvements with his entire body, but that's a very early assumption. I'm just grateful the OT came through. Yes, I had to make my second phone call to the OT office to make it happen, but at least they called me back.

Sleeping situation hasn't improved at all. Nikko still needs help falling asleep, Nikko still wakes up in the middle of the night, looking for me to put him back to bed. He's been averaging between 1-2am for wakings, but tonight he woke up at 12 midnight.