X-ray

Today I took Nikko to his gastro appointment. It was about a month ago that we last saw Dr. Nelson. I didn't expect much, and honestly, not much happened. Nikko ate lots and lots of lollipops today. When we got to see the Dr., she asked how his poops have been and I told her how we never hit that level of solid formed poops, 1-2x day. She said that she would like for Nikko to have an x-ray so she can check for blockages or anything else, and THEN we will move on from there. Or as she had put it, and I don't quite remember her exact words but were to the effect of: "...and we'll see about what medications to use, and go from there." A little alarm went off in my head because I have heard from other ASD moms dealing with the gastro problems in their kids that many gastros push meds, which serve as a band aid, instead of helping to solve the problem. I don't really want Nikko to be on gastro meds right now. Sure, I want to find out what is causing him to constipate so quickly, and why can't his erratic diet support all that healthy eating that's supposed to contribute to healthy bowel movements? I think I have to compile a solid list of questions and have it handy for the gastro when she calls back in the next day or two. Oh yeah, so after our appointment, since my parents were watching the younger two, I decided to take Nikko straight to North Shore Hospital in Glenview for an x-ray. The process from registration to waiting to getting the x-ray took an hour. When we got to the exam table, I told the thin (Filipino?) rad tech that Nikko had autism and wasn't verbal, and he'd put up a fight so I'd have to restrain him, and would probably need help. When Nikko first laid on the table with lollipop in hand, he looked up at the square lights and perhaps thought it was a TV. For three seconds I thought we would be ok. Then Nikko started squirming, then squealing, then crying and yelling and wriggling. I held his arms and torso still while the tech held his legs and hips, which was probably harder to do. Somehow, they got a picture, even with Nikko bolting up at least once and losing his shoe. When we were all done, Nikko was pretty pissed off and breathless. I thanked the tech and escorted Nikko out. What was kind of priceless was the look on another boy and his mom who were waiting a few feet away, the boy wearing a smock and who was originally excited about his x-ray. I think we rattled them slightly, but I couldn't stick around to see. I whisked Nikko down corridors into the lobby and let him cool off while getting his coat on. Poor guy had the blood drawn Saturday, then restrained so we could look at his bleeding toe, and then today with the x-ray. I think I'm done with hospitals for a bit.

Nikko and I went on a quick grocery trip before heading home. The rest of the night was calm, thank goodness. Tomorrow he has speech with Kathy, and then while the boys are in school I plan to visit the NSSEO to check out a PECS DVD.

Triple blood draw

Around 10a we took all three kids to Northwest Community Hospital to get their blood drawn. Ronin and Audrey were due for blood testing regarding their multiple food allergies and Nikko was getting ruled out for celiac disease per his gastro. We've been putting it off since over the holiday but decided there was no better time to do this, especially if Denis' case went forward in full motion this month. I loaded up on the lollipops, DVD player, books, toys and snacks. The kids didn't know what we were going to the hospital for. Nikko followed me to one of the registration booths and sat asking me for lollipops while a receptionist helped fill out all our paperwork. Nikko ate five of them before we were finished, and in between lollipops he asked like a parrot and would start whining when I told him no.

The lab was on the second floor, a very familiar place to us since we've been there multiple times when the kids were babies. Two phlebotomists were on hand to handle us. Nikko was called first but had to wait longer because his paperwork wasn't ready at that time. I led Ronin into the room, put him in my lap and instantly he was whining. I wrapped my leg around his, put my left arm around his body to grip his right arm, and then tilted his face toward mine with my right hand so he wouldn't see what the phlebotomists were doing to his left arm. Once the butterfly needle went in, Ronin started crying. He tried to move but I kept talking to him about eating Old MacDonald french fries when we were done. I also promised him a lollipop which I gave him immediately when we were finished. I walked him back to the lobby where Denis and Audrey sat, and then took Nikko's hand. He started whining, too. We did the same procedure, except Nikko had started crying loudly from the moment I picked him up. He was tense and tried to move his body but I immobilized it well. I also turned his teary face toward mine and started singing Twinkle Twinkle Little Star. He was pissed, but didn't lash out, thank God. When we finished, he tore off the taped gauze on his arm and fled the room, standing in the hallway to loudly protest. I walked him back (of course he trailed me the whole time) and called for Audrey. Happily and unknowingly, she said, "My turn!" She sat on my lap and was slightly curious when I turned her head away from her left arm. She felt the prick, struggled slightly and announced, "It huuuurrrts!" But there were no tears, I told her she was such a brave little girl, and she got stickers before getting a lollipop. The girl was no problem. :)

We went to do a Meijer grocery run, and finally got some chicken nuggets and fries on the way home. It was the kids' reward for getting their blood drawn. I was surprised that the hospital was not crazy-busy on a Saturday morning. It was almost deserted. That meant we didn't have to wait long at all, and that was fine by me. I think Nikko certainly didn't like what happened to him, but I don't think it was traumatizing since I was there and holding him the whole time. I don't want to do this again for a long time.

This evening, after dinner, I saw blood on the couch where Nikko sits. I ran to him and saw that the black part of his toe was gone, replaced by smeared blood. I thought his toenail came off but upon closer inspection I saw that the blackness under his toenail was probably a huge blood blister that had popped when he jumped on the couch. His toe actually looks closer to normal, much better, except for the tattered skin around the nail bed. It's a relief because his toe was looking like it needed to be amputated at the tip. Nikko refuses to wear any type of bandage, of course. It's maddening that we can't cover his wound without him trying to rip off the band aid.

I haven't been feeling great the past two days. My head is all cloudy, my sleep is messed up, and I've been missing my alarm so I missed my morning workout. I hope another day of rest will put my body back on track and clear my sinuses and cough. I need to work out again!

Karen's feedback

After his session today, Karen asked me if Nikko had any reactions (positive or negative) to the therapeutic listening she did with him last week. I told her I didn't notice anything different. He wasn't more scripty and wasn't in a bad mood at all. He was destined to go to school anyway. Same thing today, he wasn't more or less scripty. Other than the toe-door-slamming incident, he's been in a pretty good mood all week. I have noticed, as I mentioned yesterday, that he's very unfocused as of late. I'm still wondering if the orange cheese puffs are to blame, or was it the cheesy mac I made (loaded with garlic because I ran out of onions)? I may never know, but I won't give him any more orange cheese puffs just to be sure. Karen talked about their session, how it went well until near the end when they were doing a memory card drill. He was naming a card and then depositing it into a box, signifying that the action is complete. I don't know exactly what they were doing, but suddenly he wouldn't put the card in the box because the lid was on, and I heard him screaming up a storm. She didn't seem worried, however. He got over it once the session was over and he promptly asked for a lollipop when he saw me. Karen talked about how Nikko takes a few seconds, even as many as 30 seconds, to respond to identifying a word. That response time needs to be improved so that he can properly utilize the words he has learned/is learning in everyday interactions. But there is something in his head that is not making the connection fast enough. The unspoken word is, I assume, autism.

We came back home, had lunch and then the boys went to school. I ran errands with Audrey. We went to drop off some mail, some gifts for the Creens, and then to Costco. The boys came home and had snack, and then revisited watching some Veggie Tales episodes. It was an easy night, and Nikko was still in good spirits. His toe is probably not hurting as much as it did, but it looks nasty and black. Hopefully it's just the bruise.

Tomorrow morning we are seriously going to attempt to bring the kids for the blood draw. I don't know how it will go, but I do know we'll have to bring some strong reinforcers like lollipops and maybe even M&Ms for Nikko. I'm not looking forward to it, but it has to get done!

Orange cheese puffs?

1/7/11 School Report - Speech: Off today. Not too interested in activities. Did enjoy greetings. Tried where ?'s and fishing game.

This is disappointing to hear, in light of the fact that Nikko had a good ABA session with Sarah just that morning. When Sarah arrived, I told her how Rebecca's session didn't go well despite having a good day at school. Today everything was flip-flopped! Sarah said Nikko did good work, and when he got distracted by the slide and the bball hoop she piled everything up (like what Rebecca did) so he couldn't climb on stuff. I didn't hear any shrieking or complaining today, either. I wonder why he was turned off in school. I hope he's accomplishing things as of late, but we've only been back to school for four days now. Ah, the worry.

Nikko's foot still hurts, but his limp is improving. It doesn't look great, however. The tip of the toe and under/surrounding the nail bed are black, bruised. I wonder when that nail will come off.

On another note, Nikko's really been pushing me regarding wanting things, especially food that he can't always have, like cheese puffs. I am wondering, don't think I'm too nuts here, if there is a difference in the orange cheese puffs vs. the yellow organic cheese puffs I get for him? He's been defiant toward me during the times he's eating the orange ones, but I don't get this resistance when he's eating the yellow ones. I wonder if the food thing has any merit. The last time I doubted a food was when it was organic vs. regular mac cheese. He's eating fish sticks but nothing else unusual (chocolate pop tarts, no biggie). Maybe I should just phase those orange ones out... I only got them because Audrey made such a stink about them in the store. Figures.

Unfocused

Day three of toe, technically. Looks bad, dark under and around nail bed. Not more swollen. He puts more pressure on it today, and is not walking around like Quasimoto as much. Still favors it, though.

School Report: Speech - Greetings, 1-step directions.
OT: Did alerting activities not on feet i.e. big ball bouncing, upper body strengthening. Then did table work - cutting, drawing. Lots of singing today.

He also had a good speech session at APT with Lisa. Said he was in a good mood.

The downside? His ABA session did not go well, according to Rebecca. She said he was in a good mood, but very, very distracted and unfocused. He didn't complete his drills and she had to call his name out a lot to get his attention. I thought he did ok considering I didn't hear any crying or protests, but I do understand how Nikko stands there looking up into the ceiling, off in his own world, and just *clicking* with his mouth. It can be maddening. I've been yelling his name from the kitchen to call him back to eat. I have to physically go get him. It's not fun. I wonder when his unfocused-ness is TOO MUCH...?

Hurt Toe

Poor Nikko. He's into closing the doors in our house, whenever he gets a chance. He was closing the bathroom door when his right 2nd toe must have got caught between the door and the doorway. He started crying in pain and I arrived to see blood welling under his toenail. It didn't gush out, just stayed underneath and turning it black. His toe didn't swell up big, but he was in obvious pain. Nikko wouldn't let me put an icepack on it for long at all, and he slunk away trying to protect his toe. I let it pass and just watched him, wondered how he'd be the next day.

Today, he was hobbling around on the side of his foot, but was in good spirits. He was able to lie on his tummy and hoist his feet up, and was able to walk by dragging his foot sideways. I tried to put his shoes on before ABA, just to test the fit, and he was NOT happy about it. This worried me because he was destined to go to school today. I warned Kathy about his foot and she told me later that he wasn't affected by it during his drills. When it came time for socks and shoes for school, Nikko was so not thrilled. I lured him into his shoes with the promise of school and his backpack and his teachers. Outside while waiting for the bus, he dragged his foot around like Quasimoto. The school report said that he didn't fuss or cry about the foot but walked gingerly and slowly. I saw that here at home, too. He's still able to motor around on it, even step on it at times, and also jump a little. But I hope it gets much better by tomorrow, and the day after.

A HF Nikko

Today is Sunday. If I don't blog about something within a day, and if I don't write it down to remember, then I'll most likely forget it and that defeats the purpose of the success of the blog. Luckily I jotted some things down from Wednesday so that should keep me updated. The ABA Team met on Wednesday afternoon to get on the same page about doing the drills and handling Nikko. I took some notes and realized that it helped to outline some things we should work on with Nikko now:

1.) Work on YES or NO. Try offering Nikko things he doesn't like to encourage a NO. They have to be super, super dull because he seems to show an interest in almost everything in the ABA object bag, even a paper clip.
2.) PRETEND ACTIONS. Drink from the cup. Comb the hair. Nikko needs help in showing how to do these things.
3.) TURN TAKING.

On Thursday morning, Jenna came over to observe Sarah's session since Sarah wasn't able to come to the meeting the day before. At the end, they both found it was really helpful because Sarah could get Jenna's input regarding a mystery behavior, and Jenna could silently observe to see if Nikko would do something different with each therapist. That was exactly what was happening. Jenna surprised me by saying that she was impressed with how high-functioning Nikko was. I blinked with an "Excuse me? Please explain." Jenna said Nikko can process who he can manipulate. Knowingly refuses to work, walks away in defiance but looks back over his shoulder to see if you will follow him. That shows he is thinking in complex ways, and that's pretty high functioning. I was interested in her explanation because I have never considered Nikko high functioning, but I based that on his lack of language. The high/moderate/low functioning debate is interesting and varied because a child can be HF but still have severe sensory issues that hamper him from being social, or LF and be able to talk and express himself. That's where people throw out the labels and say it doesn't matter whether one is HF or LF. I would still sit and think Nikko is LF, but truly when I consider how Jenna described Nikko's complex thinking, I am apt to not want to call him LF ever again.

On Friday, we went to meet/work with Karen, the ST we haven't had a chance to meet yet. She told me she never read Nikko's file and likes to get a feel for a child by working with them first. Karen asked me what I wanted to accomplish through speech therapy and I told her he needed progress in both receptive and expressive language. When it was time for Nikko to go work, he took Karen's hand and they started walking away. Karen said, "Bye, Mom!" and that made Nikko wrench his hand out of hers. He looked at me expectantly. I told him to go play and he still looked anxious. I said to Nikko, "Kiss me good bye," and then he went running away with Karen.

Even before the session started, Nikko was getting antsy in the waiting area. He saw my backpack and was eyeing the front pocket. We both knew what was in it so I put it in my lap to keep him from going for the zipper. He leaned in expectantly so I said, "First speech, then......" He replied, "Lollipop!" I was really happy that he was able to finish my sentence without me prompting him or telling him the right word. At the end of the session I had to make good on my promise and give him a lollipop.

On Saturday, New Year's Day, we went to my cousin's house in Elgin. It was a big house with carpeting and stairs, and a lot of kids ran about. It warmed me to watch Ronin and Audrey run off with their older and younger cousins and play hide and seek. Nikko was also in the mix, although he opted to drop out and bother me for cake with icing or something else bad for him. He found a Winnie The Pooh bear and ran along with it for a time. During the gift opening he was trying to open everyone's gift and was antsy in the enclosed space. He got attached to Sabrina's mini-figurine Tinkerbell and she kept an eagle eye on him so that it would find its way back to her. I assured Sabrina that when we left, I would pry it from him and return it to her, even though he would be crying. Minutes before we left I noticed Nikko left Tinkerbell on a table while turning his attention to a toy figurine of Kai-Lan that was in a box. When it was time to leave, Nikko didn't want to part with Kai-Lan, which belonged to Jovy, so I had to pry the box away from him as he cried and screamed for it while going out the door. Other than that, it was a pretty good day for Nikko. I can never tell what toy he will become attached to. I can't guarantee that he will want to carry around a certain car, and there was even a new birthday cake toy that I was certain Nikko would claim as his own and want to bring home. But Nikko didn't get attached to it and preferred the figurines over bulkier toys. I look forward to when the holidays and gifts are completely over so that the kids' expectations are no longer centered around getting presents.