Sunday, July 29, 2012

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.

Thursday, July 19, 2012

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.

Tuesday, June 12, 2012

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.

Thursday, May 3, 2012

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. :)

Saturday, April 21, 2012

What If

I played the dangerous What If game today...

I was finishing giving Nikko a bath tonight. He was really ticklish so washing his squirmy body was a challenge. He was squealing and belted out loud, high-pitched screams. His arms were flailing and although he gave me some spot-on eye contact to see if I was going to tickle him, they were followed with head rolling, darting sidelong glances and a litany of quotes from YouTube clips with gibberish filling in the gaps. As I helped him out of the tub, I looked at him and wondered....

If he didn't have autism, what kind of personality would he have?
Would he be chatty like Ronin?
Would he be extremely intelligent like his siblings seem to be?
Would he be having a regular conversation with me right now?
Would his movements be less jerky and with more purpose?

I put a towel around Nikko and he was so giggly and squirmy, spouting off a language that sounded like Mandarin Chinese. I felt a lump in my throat growing and my eyes getting teary. Then I told myself to get it together, mentally kick myself in the butt and move on. It only took a matter of seconds for my thoughts to spiral down into a dark place. But it serves no purpose to dwell on the What Ifs. They don't do anything except bring me down into a depressive state. Instead, I stifled my sobs and kept moving forward, wrapping the towel tightly around his shoulders for just a few more seconds before he became antsy and broke free to run down the hall. He dragged his two Linus blankets along and ran to Ronin's bedroom to slam the door shut. Then he raced past me in the hallway back to the bathroom to slam the bathroom door shut. Finally, he ran into his own bedroom and jumped excitedly on the bed, waiting for me to finish our post-bath routine.

Thursday, April 19, 2012

Gastro visit / Poop routine

***I do NOT understand what formatting is going on halfway through this post, so I apologize in advance***

A week ago I took Nikko to see another gastroenterologist. It was a guy this time, and I'll start by saying that he was a nice one. He understood autism, and even tried to interact with Nikko with big smiles and talking TO Nikko. Nikko was wary of him, but eyed the doctor curiously when the doctor made these high-pitched squeaky sounds. It almost reminded me of dolphins communicating with each other. Our discussion was shorter than the amount of time we sat waiting for him, but it was informative.

In a nutshell, the doctor told me what I should do, but didn't want to do. And that's how I learn, folks.

The doctor said that Nikko had encopresis, which is very common with ASD kids. This is an excerpt from wikipedia, which defines it: Encopresis is commonly caused by constipation, by reflexive withholding of stool, by various physiological, psychological, or neurological disorders, or from surgery (a somewhat rare occurrence).

The colon normally removes excess water from feces. If the feces or stool remains in the colon too long due to conditioned withholding or incidental constipation, so much water is removed that the stool becomes hard, and becomes painful for the child to expel in an ordinary bowel movement. A vicious cycle can develop, where the child may avoid moving his/her bowels in order to avoid the "expected" painful toilet episode. This cycle can result in so deeply conditioning the holding response that the rectal anal inhibitory response (RAIR) or anismus results. The RAIR has been shown to occur even under anesthesia and voluntary control is lost. The hardened stool continues to build up and stretches the colon or rectum to the point where the normal sensations associated with impending bowel movements do not occur. Eventually, softer stool leaks around the blockage and cannot be withheld by the anus, resulting in soiling. The child typically has no control over these leakage accidents, and may not be able to feel that they have occurred or are about to occur due to the loss of sensation in the rectum and the RAIR. Strong emotional reactions typically result from failed and repeated attempts to control this highly aversive bodily product. These reactions then in turn may complicate conventional treatments using stool softeners, sitting demands, and behavioral strategies.

I'll be the first one to admit that I didn't think Nikko withheld his poop. I didn't understand how a child could hold things back way up high in his intestines of his own accord. It's possible that constipation was/is causing buildup to impact, but I was looking for the reason WHY and how to solve it. I wondered if it was just an issue of motility. Why was Nikko able to push out the impacted poop with the aide of a suppository each time (the laxative caused cramping for it to happen) but couldn't seem to do it by himself?

Two nights before the appointment Nikko was finishing a bath, leaned over and expelled a compacted poop in the tub. I was surprised because he had never done that in the tub before, but it also showed me that he's fully capable of pooping without a suppository.

Back at the doctor's office, he told me to stop helping Nikko poop with a suppository or even with enemas (haven't done that since last year under Dr. Nelson's watch). The doctor took me by surprise and first asked me what kind of education Nikko was getting. That was such a weird question to me, but he explained that he can treat Nikko for the constipation, but Nikko would benefit from being understood by teachers that understood autism. He said that nowadays the knowledge about autism is so much better and more specific that those who care for ASD kids should be very well-versed in autism so they know how to handle it. I think he was championing an environment that was autism-specific, and it definitely gave me pause. He spoke about Sensory Integration and how important it was for kids to be in tune with themselves, including their bodies, and being bombarded with sensory overload was compromising his progress. He asked if Nikko's OTs were versed in autism. I said that they were, but other people on his team were not. Definitely food for thought.

Then he went back to being clinical and basically said that Nikko had encopresis, he'd give me a printout all about it, and then he recommended that Nikko start a schedule of sitting on the toilet after breakfast for 5 minutes as a start. Use a timer. Add 2 teaspoons of Miralax powder daily, and Little Tummies or Senna at bedtime.

In other words, we had to train Nikko to poop. Not what I wanted to hear.

I really, REALLY didn't/don't want to deal with poop leakage in Nikko's underwear. He was just starting to make great progress with his potty training regarding #1s and I wondered if these attempts at #2s would cause him to regress. The doctor told me that he was looking at the bigger picture, that Nikko needed to be trained the right way so that he doesn't be the stinky kid in his class, the one having poop accidents at school when he's 8 years old. The picture in my mind of Nikko having an accident in front of NT peers made me go pale. I told the doctor that Nikko was due for a poop today or tomorrow, and should I not help him anymore? The doctor said Nikko won't burst inside. See what happens.

I needed to think about the game plan, so we went home. I have to admit that I helped him poop with a suppository just one more time the next day, to clear the pipes and then see what would happen over the weekend. Nothing major happened, just one poop smear in the underwear. Could have been worse.

On Monday after he came home from school I gave him a snack, did homework with him, let him run around to play a bit, then grabbed the kitchen timer and took him to the bathroom to sit on the toilet. I set it for 10 minutes. He sat with the iPod Touch, and within three minutes he had a bowel movement. I was amazed. It wasn't totally hard or thick; I think the Miralax helped soften it. It wasn't as huge volume as past poops have been, and it was actually smaller in girth (yeah, fun stuff to describe poop, huh?) than past poops. BUT HE DID IT ON THE TOILET. I praised him loudly and happily, and he managed to look up at me with a wry smile, no joke.

On Tuesday we sat on the toilet but there was only some slight smearing, no big bowel movement.

Today, Wednesday, we had repeat performance of Monday. YAY!

It's only been less than a week, but I'll continue this routine of taking him to potty after school. He may be ready to have a poop after holding it in all day. I always try to coax him in the mornings, too, but afternoons may be better for him. It's worth a shot. If this training works, and we're really still at the beginning, then I am going to be over the moon. Quite honestly he hasn't had an accident in his nighttime pull-up in a loooong time, but I'll keep that going for just a bit longer.

Sunday, April 1, 2012

Independent potty visit!


But wanted to just throw this in really quickly.... Nikko's been wearing underwear during the day, pull-ups at night, and has had maybe two total pee accidents to date. He did have one poop accident that I didn't see coming because he just had a big poop the day prior and that usually clears the pipes for two days. Every hour or whenever I gauge that Nikko's ready for a potty visit, I go and tell him that it's time to go potty. He always says no, until I repeat it often enough that he decides that "YES, pee pee potty!" is what he declares.

Today, however, I was in the living room watching TV and then I heard the toilet seat clink up... and then I heard Nikko pee in the toilet. I ran over there to help assist with the end, wipe him up, and then he put down the toilet seat, flushed the toilet, and marched to the sink to wash his hands. I was ecstatic! The amazing thing is that he did this today a total of FIVE TIMES. Each time he went to the bathroom on his own. I didn't initiate anything, but I went in to follow up. I couldn't believe it. I wonder if he just decided that he didn't want to pee in his underwear anymore. That's the hope!

Monday, March 12, 2012

Feedback from Karin

Whenever I talk to Karin the Speech Therapist, I have more hope for Nikko's progress. On Friday he had come out of a very nice OT session with Karen the OT. She said that he was very willingly doing the writing exercises she put in front of him. He was also protesting appropriately. When it was time for them to leave the gym/play area, he stated, "No!" and then sighed and said, "Shoes," in a huff.

After his speech session, Karin told me that while he waited at the door for her to finish writing her notes so he could leave, he came over to her, leaned into her face and said, "I go see Mommy." Then he went back to the door and waited. So stinkin' cute! I swear, the things he says to Karin just blow my mind away. I get a few nuggets here and there, or the ones that are from YouTube clips, but the gems she shares with me are priceless. I also love that she gets working with Nikko, that he respects her, and that she doesn't back down.

Wednesday, March 7, 2012


The short:
I put Nikko in underwear today, for the first time ever, and sent him to school.

I felt like having a heart attack.

He came home dry. His aide reported that he remained dry all day but used the toilet at the appropriate times. He kind of pulled on them a little during the day, but not too bad.


The long:
There were two reasons why I put Nikko in underwear.
1.) He gets sweaty. As of late, after lots of running around he would come up to me saying, "Change my diaper." I'd take him to the bathroom expecting that he already peed in his pull-up, but they'd be dry. He'd also be frustrated because he didn't need to pee; he just wanted to take off his sweaty pull-up. This was also happening in school, and with warmer weather on the horizon I could see that frustration would build up tenfold.
2.) Before the San Francisco trip, I chatted with Karin the Speech Therapist about Nikko's potty training. She highly suggested that I put him in underwear as a way to help his speech. I'm sure I looked at her with exasperation and dread. It wasn't so much the peeing, but the fact that Nikko doesn't have consistent bowel movements and is prone to eeking out poop smears preceding a backup was/is a constant source of anxiety for me. Karin pointed out that putting Nikko in underwear was akin to moving up to the next level of speech, where he would/should start communicating independently that he would need to go to the bathroom since I currently take him at scheduled times ("scheduled" meaning within 30-45 minutes of the last time I saw him drink juice, or at least on the hour every hour he's at home). Nikko may also not like the feeling of wet underwear and could/would ask to be changed. That is the hope!

Yesterday the temperature was in the mid-60's and Nikko was sweaty at school. Therefore, I decided to put him in underwear today to jumpstart my fears of the above two reasons. And he did great. The aide was very excited for this new development. I'm extremely pleased that he didn't have any accidents in school, and I hope he'll continue this way. I think that when he has signs of gassiness is when I'll determine when to help him out on the toilet ("help" meaning to use a suppository), which will hopefully reduce/eliminate any chances of seeing poop smears in his underwear.

Today seemed to be a good day for Nikko overall.
OT notes: Good session. Participated in warm ups, practiced writing 1st name and last name - did well, worked on more detailed drawing and then did spelling sight words on iPad. 

Later in the afternoon, they wrote about a Lucky Day. Aide: "Nikko said he wanted to write rainbow. I drew first ring of rainbow, Nikko did the rest!"

Nikko also did well in his discrete trials. He did a fantastic job counting, according to his aide. His notes also said that he mastered two skills: Body Parts #2 and Sight Words #2.

Thursday, March 1, 2012

San Francisco

NOTE: This is long, detailed, and a tedious read. I wanted to get this all down before I forgot all the details, however, and it took me two weeks to do it. I don't expect anyone to read it in its entirety; it's my own way of documenting our experience.

This past weekend was my brother Eric's wedding in San Francisco. I was so happy to be part of it and to spend time with my family and cousins. But it was also an emotionally wrenching trip with peaks and valleys,  pertaining to Nikko.

I wanted to go. I was excited to travel to San Francisco. But the thought of being on a plane with the three kiddos was causing me great anxiety. I packed as many fruit snack pouches as I could manage. We had the portable DVD player, the Leapster Explorer, the Mobigo, the iPod Touch, and sheets of stickers for Audrey. The kids were excited to ride on a plane, but Nikko was dragging his feet. He got attached to his blue hooded winter coat and didn't like to take it off. We got through the airport security line without a glitch, although Nikko would not walk through the scanner doorway alone. He dragged me behind him and thankfully the TSA screeners were forgiving. The plane ride itself went rather well, except for the last hour of the trip. Suddenly, Nikko did not want to wear his lap belt. He was protesting and fighting me off, and I had to bribe him with fruit snacks to keep it securely on his lap. When we arrived at the San Francisco airport and went to baggage claim, Nikko was ornery and loud, making a tantrum about going to the bathroom. He was probably tired of being on the airplane and needed to vent, so I tried to ignore him. I was pretty tired of trying to calm him for hours.

We arrived and my brother Fran picked us up in a 15 passenger van. We met up with the rest of my family at the San Francisco Conservatory. There was a greenhouse that was comparable to the Botanic Gardens in Illinois, but Denis and I opted not to enter the greenhouse because we knew Nikko wouldn't care one whit about it. I don't know exactly why Nikko was being antsy and whiny, but he kept refusing to go to the bathroom when we'd tell him it was time to go. In fact, he's been very resistant to bathroom overtures as of late. This time was no exception. At one point, when I was holding onto him, he was really struggling against me and we both fell to the ground. I ended up skinning my knee through my jeans (no hole, but it was bloody!) and he landed on his hands unscathed. What gets me down is that he enters a whiny phase, trying to communicate his discomfort about "something", then resorts to a chanting default mode until he starts to break down and cry unless I can figure out what's bothering him. And I'm not always able to decipher his wants. This has been a trend the entire trip. He was very mellow during dinner that evening, but I was tired of trying to cater to his rants.

The kids did not acclimate to Pacific Time, by the way, and ended up waking up every morning at 5:30am Central Standard Time. Yay.

On the actual day of the wedding, I was very stressed out because we tried to fit in a swimming session at the hotel pool before heading out to the church. Our timeframe was extremely tight and we were not able to dress up the kids until we got to the church around 1pm, right before the ceremony. Lucky for us, there was a changing room (for the bride) that we were able to snag so that we could change the boys into their suits and Audrey into her dress. I was worried that Nikko would not willingly wear his dress shirt, suit and shoes, but he was compliant on all fronts except for the clip-on tie. I had forgotten Audrey's white tights, despite my confidence that I had packed everything. Ronin looked smashing in his suit and orange tie, but as the day progressed we discovered that he would be the most ornery regarding keeping his dressy attire on his body. What I was really upset about was walking into the back of the church, seeing other family and relatives dressed appropriately for the wedding, and my three kids bouncing around in their gym shoes and sweatpants. I didn't want anyone to look at my kids in such a casual state, and I felt as if I would be judged as the mom who couldn't get her kids dressed up in time for a formal event. Everyone else was able to do this, so why couldn't I? In hindsight, I would have to submit that we were at the mercy of the tight schedule, that I had refused to change my kids into formal attire BEFORE lunch, knowing that they could mess up their suits with greasy hands. What I also worried about was drawing even more attention to Nikko, who was already kind of stimmy and not speaking in clear words throughout the trip. Yes, it all shouldn't matter what others think, but at a wedding, at least to me, it does. Especially because we were surrounded by many younger cousins that don't see us often since they live in California.

The wedding went relatively smoothly except for Nikko's bowels. I don't know why he chose that day to be particularly gassy, but he was also passing some poop smears and so my level of anxiousness was extremely high. He wouldn't willingly go to the bathroom when told, adding lots of dramatic whines and, as the evening progressed, physical resistance. It was trying and tiresome.

The day after the wedding was spent at Pier 39. We had lunch at a nice restaurant/hotel called the Blue Mermaid. Nikko was especially ornery at this time, and I couldn't tell if he was uncomfortable with gassiness or poop. He kept whining and wailing in the restaurant, wasn't satisfied to get fruit snacks, wasn't satisfied with his toy cars or a map, and wouldn't sit nicely. I saw a head turn at the next table, from the corner of my eye, but I had my blinders on and ignored anyone who might have given me a dirty look. At one point, when his crying was just at its peak, I decided (with a little urging from my sister) to take Nikko outside to get whatever was bugging him out of his system. He jumped up and down and thrashed in front of me, distressed but unable to tell me why. I was certainly frustrated with him, but decided to give him big hugs and strokes so that he would calm down. Denis came out with a container of potato chips and that seemed to give Nikko pause. We returned back inside and he settled down when lunch finally arrived. Was it as simple as being hungry? Probably not, since fruit snacks didn't appease him. I think all the travel factors were taking a toll on him.

A blonde lady came up to me and bend down to tell me something. I have read about instances like these before, when someone who has observed you having a tough time with your kid comes up to you and says something akin to this: "I can see that you're having a tough time. I just wanted to say that you are doing a great job." It's supposed to be a kind-hearted compliment, a sympathetic hand on the shoulder. I thought that's what this lady was going to tell me.

Instead, she said this: "I just wanted to say thank you for taking your son outside. My ears were really starting to hurt. So thank you very much for doing that."

I was stunned into silence. I HAD NO RESPONSE. I didn't know if she was being haughty or being sincere, and I think I leaned toward sincere, so I simply nodded back at her before she turned and left. It hit me seconds later that I SHOULD HAVE SAID SOMETHING. Didn't this just happen to me a few days earlier, with the school bus incident? I was expecting this woman to say one thing, and when something totally different came out, I wasn't prepared for a retort. I wasn't ready to give her a teachable moment. I didn't want to make a scene and embarrass her with an impromptu education on typical autistic behaviors. I didn't want to pick a fight with a total stranger in a different state.

I should have said something like: "I didn't take him outside for your benefit. I took him outside to give him a chance to regulate himself. He has autism. He's not behaving badly on purpose. He can't communicate what he feels."

I hated myself for not being able to come up with a defending remark. AGAIN. In hindsight, I have to let this go with the knowledge that this will happen again in the future and I need to be strong for Nikko, that I have to keep practicing to say something next time, that I have to defend him. I have to learn how to remain calm while educating others about autism. But at that moment, in the restaurant, I was not in the mindframe to educate anyone. I was tired, hungry, frustrated, and sad that Nikko wasn't happy and was having a bad time. It was the worst timing for that lady to approach me, and now I'll never forget it.

Moving on...
Later in the hotel that evening, I had to help Nikko have a bowel movement. Between that and his bath time, he lost his first tooth! Luckily, I was able to find it on the rug. It was the first of three teeth he would lose within the next six days. The adult teeth were growing so fast that it made his lower front teeth terribly crooked and wobbly within a matter of a few weeks. He didn't act strangely about having a gap in his teeth, but as the week progressed he now puts his fingers in his mouth.

We left San Francisco on Monday morning. Nikko's mood seemed to take a nosedive and he was incredibly sluggish/sleepy. Right before the plane took off, he threw up on his coat and my hoodie. He did a good amount of sleeping on the plane, but each time he took in some liquid, he threw up again. That would equal two more times. I think he had a temporary sickie bug that left the next day, but it was just enough to make me extremely anxious on the plane. Upon returning to Chicago, Nikko was not thrilled to walk in the airport, probably because his tummy still hurt. But when we got home, his mood stabilized as he got comfortable in his blankets and on the living room floor.

So, we made it. We survived our trip. I'm glad we got to see our cousins and family in San Francisco, but I don't want to travel with Nikko for a long distance any time soon.

Tuesday, February 21, 2012

Crying like a baby

Feb. 15, 2012 - I just came from getting Nikko off the bus. The bus driver told me Nikko was crying about something, and sure enough I walk back to his seat (he's strapped into a 5-point harness) and he's bucking and wailing about something. I look down on the floor and I see that he had dropped a Valentine and it was totally out of reach. I unbuckled him while the other kids on the bus were peaking over their seats and asking why he was upset.

"He dropped something, but it's all ok now," I said in a jaunty voice while helping a red-faced, angry Nikko out of his straps.

As I turned away I heard a little girl say to the others, "He was crying, like a BABY!" And then I heard many of the kids start laughing. The words, "like a baby" were echoing in my ears and I almost turned around to tell them all, "He's not a baby!" but I didn't. I walked him off the bus and tried to look confident as we walked back up the driveway. I didn't look back at the bus.

What would you have done?

I didn't say anything to those kids because I think I would have looked like I was whining, too. I didn't have my rote speech ready on how he has a hard time communicating, but he's a nice boy and a good kid like everybody else. I didn't lecture the bus on how not to be mean because I felt like no one would have listened. And now, in hindsight, I'm mad that I didn't say anything.

I hate all those little shits right now.

ETA - We are leaving tomorrow for a wedding in San Francisco and so I won't see any of those kids until Tuesday next week. I can't wait to get the hell out of here, and take Nikko somewhere fun.

(Copied & pasted from an autism forum where I posted this, just so I could remember how I felt.)

Wednesday, February 8, 2012

Quick notes

2/7 Aide notes - Nikko got very upset during one of the 100 days activities [it was the 100th day of school, being celebrated school-wide]. Class was shown containers of different things and they had to pick which container had 100. One of the containers held M&Ms. Nikko very much wanted to eat the M&Ms and had a hard time understanding they were not for eating, just for looking. It took a while, but he eventually calmed down. However, we weren't able to do all the discrete trials due to the shortened time.

2/8 OT notes - Heavy work activities, then worked on fine motor control at table. As a reward - pedalled bicycle back to Mr. Stoll's class.

Tuesday, February 7, 2012


My niece was the lead role of Dorothy in her middle school production of The Wizard of Oz. I planned to take Ronin and Audrey, but knew that Nikko would not be able to sit still or be quiet during a two-hour performance so I opted to leave him home with his daddy. Nikko would probably see the crowds of people and tell me immediately that it was "time to go home", perhaps squeal or yell, or even struggle to leave. I didn't want to ruin the experience for other families. Besides, he'd get to spend some 1:1 time with his dad. But as the hour came closer to leave the house with my two youngest, I was filled with intense guilt. Suddenly I wanted to bring Nikko (I really couldn't, I didn't have another ticket for him) because it didn't feel right to go somewhere without all my kids together. I also started to imagine the good-bye scene getting ugly. I knew it would be great for Ronin and Audrey to experience seeing a play, but it bummed me out that Nikko could not enjoy it this time around.

Nikko got upset when he saw us getting ready to leave, watching his siblings putting on their shoes. He grabbed his shoes and told me "shoes!" but I told him that I'd be right back, and I'd see him later. He didn't understand where we were going, and why he couldn't come along. Denis later reported that it took a while for him to calm down, but he took him out to get chicken wings and he was compliant. I really wonder how Nikko felt, though. At the play, when my mom asked me where Nikko was, I started to explain that he was home with Denis, and I got choked up with tears in my eyes when I told her that Nikko probably wouldn't be able to sit still and would make noise. My guilt felt so huge. I know it was the right thing to do, but as a mom I felt like I let Nikko and myself down by not including him. Was it fair? Shouldn't Nikko be exposed to things that other neurotypical kids experienced, whether or not he can actually handle them at the time? Where does one draw the line as to what is fair and what is not?

Friday, February 3, 2012

First Potty, then Swim Class

I wrote a note to Mrs. S this morning, warning her that Nikko did not have a successful bowel movement yesterday, and I hoped it didn't affect his day today. I really hate being on poop watch. His morning wasn't as eventful as his afternoon according to his daily report:
(afternoon) Opening - Days of school - Nikko counted by 10's out loud.

Centers- Art- worked independently for the most part.
DT- Started new set of sight words today.
Hearing test - world respond to tone, but would not wear headphones for official test.

Special Activity - Gym - Scarecrow tag - Was engaged.
Paddles - tried hitting ball over net
Danced - did move along to music

When he got home and finished his snack, I had to hurry and get him ready for his swim class. When I took him to the bathroom to change into his swim diaper, I noticed that he was really ready to have a bowel movement but needed some help (sorry for the TMI). I put him on the toilet and had to use a suppository, but then he was able to push out a long obstruction. Thank goodness, really. I didn't want him to be late for swim class, which he loves, so I am thankful that he was somewhat cooperative instead of resistant, like last night.

Thursday, February 2, 2012

Daily progress

Last Friday we had an IEP meeting to go over Nikko's progress thus far. It wasn't meant to rewrite any goals. I got a lot of positive feedback regarding Nikko and school, as well as positive feedback about his detail-oriented aide. There were several teachers and individuals present, including the school psychologist and OT. They informed me that with Nikko's 3-year evaluation coming up, they wanted to conduct some tests to get a baseline of his knowledge and skills. They also warned me that he may not test well since he has big problems with distractability, but they assured me that they would find tests appropriate to his capabilities. I'll have to remind myself to get an update on these test results.

As for today, Nikko had a really good one.
OT - Nice working today. Participated fully in warm-up routine. Worked on 1st and last name, and letter game. Did iPad at end as a reward. 
From his daily notes via Mrs. S - Re: Stations (Reading) - Resistant to doing letter sounds with Mr. Stoll. Called me "Bad Mrs. S" because I was keeping him from leaving table.  (I LOVE THAT!)
In the afternoon session - Snack time - Sat with a friend who said Nikko was "The best friend I've ever had!"  (<3 <3 <3)
 Notes - Nikko keeps singing "Summertime, summertime." Is this a song he learned? - I had to ask Ronin about this, and Nikko is indeed singing a song he learned from a cartoon called Little Bill, which is about a young Bill Cosby as a boy. Also in his papers today was a picture about Meanies. He drew a picture of meanies, and it does look like a figure with eyes and a nose. The word WOW! was written at the top of the picture.
Discrete Trial Report - (With Mrs. M, the psychologist. Apparently, Mrs. S does Nikko's trials daily, except for Wednesday when he does it with Mrs. M. They do this so that he can learn to generalize with other people, meaning that he will be able to count with people other than Mrs. S.) Sight Words - mastered first 10 words; ID Body Parts - mastered first set of body parts; Cut with Scissors - mastered cutting. In the afternoon trials, he continued to do well with writing his name, counting objects, ID'ing letters with sound, and writing upper case. However, the notes say he started giggling in the middle of trials. Oh well.

Friday, January 27, 2012

Language gains

Nikko has been making some expressive language gains at home.

When he has trouble building something in the living room, he'll come seek me out and say, "Do you need help?" I'll then tell him, "Say 'I need help.'" And then Nikko will repeat, "I need help" while ushering me toward the living room. When I get there, I have to figure out which train track is out of place or what is broken that needs fixing.

I have to keep an eagle eye on Nikko regarding bathroom visits. If I don't tell him to go pee pee potty, then he'll resort to doing it in his pull-up. I often say to Nikko, "Nikko! Let's go pee pee potty." and then I'll pair the statement with the sign language action of a closed fist with thumb between pointer and middle finger, waving it back and forth (potty). If he doesn't have to go, he'll say, "No pee pee potty." If he has to go, he'll say, "Yes pee pee potty." This is actually a huge step forward regarding potty awareness, so I am grateful that he has been able to express this within the last two weeks. The only caveat is that visits to the bathroom are 90% prompted. He rarely tells me of his own accord that he needs to go potty. I have to ask him. This makes me ask Ronin and Audrey if they need to go to the bathroom. And so I am chirping every thirty minutes, "Do you need to go to the bathroom? Nikko! Let's go pee pee potty!" throughout the entire day.

When we are getting ready to leave the house, Nikko puts on his winter coat, comes to me and says, "Zip, please" while holding the edges of his zipper.

I am grateful for all these gains!

Sunday, January 22, 2012

Increasing requests/Chuck E. Cheese

I was sitting on a small ottoman  that was next to our couch but clearly not in its regular spot. Nikko came up behind me, started pushing on my back and said, "Stand up! Stand up!" He wanted me to move, so I did. Nikko doesn't usually command anything via action verb; instead, he requests via noun e.g. "Apple juice" or "Striped cookie."

We've also been watching the Your Baby Can Read DVD series with the kids, as I mentioned before, and now Nikko requests to watch the "Homework DVD." He is doing a good job of retaining what he sees.

Finally, today (Sunday) we took the kids to Chuck E. Cheese's for two separate birthday parties. Nikko's classmate Matthew invited him, and I had a chance to talk to the mom. She sometimes volunteers in their Kindergarten class so she knew about Nikko's speech delays, and Matthew supposedly talks about Nikko and said that he uses sign language. She was so kind that she invited Nikko to come over for a playdate anytime. I thought that was incredibly generous of this mom. I was happy to see a few of Nikko's Kindergarten classmates walk by Nikko and say hello, even if he didn't say hello back. In particular I noticed a friendly girl named Corinne, Matthew himself, a friendly kid named Jack, and a boy Nathan who didn't mind that Nikko sat next to him at the table. Nikko didn't really care for any of the video games. Instead, he enjoyed climbing up an indoor jungle gym and scurrying through some tunnels secured to the ceiling. It truly reminded me of a hamster run. I stood near the end of a slide to make sure he didn't get caught in the tunnels and freak out. Nikko actually fared really well and checked to make sure I was still standing at the same spot whenever he resurfaced.

Friday, January 20, 2012

A note to the aide

I'm copying a note I wrote to Nikko's aide regarding the progress of his discrete trials as of late:
(for those who don't know what discrete trials are, it's an ABA-based daily activity where Nikko sits 1:1 with his aide or another teacher and they do activities with him that are geared toward lessons. Each time he attempts an answer, it is recorded out of a series of 10 trials.)

COUNTING OBJECTS - you mentioned a regression in counting, that he rushes. What objects is he counting? Are they pictures of objects or are they actual physical objects? Could you try closing out the trial with him putting the completed picture or the last object in a container, signifying the end of the task? Is there a specific number of objects he'll count up to, and then lose focus? Could he be rewarded (verbally?) for completing a counting sequence before continuing to the next?

BODY PARTS - according to the reports, Nikko doesn't seem to be making progress here. Can we change up the trial with different visuals? I don't know how the trial is done on him, but perhaps he's not understanding what he can't see. Do you use a mirror with him? Are you able to touch him directly on the arm (or head or shoulder) when identifying the body part? Can you put it to a sing-song game or tune?

ID LOWER CASE W/SOUND - is it possible that Nikko doesn't understand that "N" and "n" are the same thing? When I ask him to write  word, for example FAN, he will write in all uppercases. Often if he really doesn't know an answer, instead of saying "I don't know," he will not answer at all. [This is something that Karen, his private speech therapist, pointed out to me.]

and finally, re: SWIM CLASS - Nikko was excited to see the Nikko Swim picture card on our Daily Schedule at home, because he loves the water. "We're going to swim class," is what I told him. It must have stuck with him the rest of the day [which is why today he kept saying "going to swim class" instead of doing some of the trials]. Nikko started another session of swim classes on Thursdays after school, for the next two months or so.

Tuesday, January 17, 2012

Unfocused today

Nikko had a good day back at school today, but the notes tell me that he was very unfocused during his discrete trials. We had Monday off from school due to Martin Luther King Day so I wonder if he was antsy due to that. According to today's sheet, he did 10/10 correctly with his sight words. That makes me wonder if he is getting better at processing the ones they expose him to at school, or if the Your Baby Can Read program that we're using at home with all the kids is rubbing off as well.

Thursday, January 12, 2012

Sight words

We have a book of sight words that we are using to teach Ronin and Audrey how to read. This evening, Denis was reading from the book before bedtime and I decided to usher Nikko away from the iPod Touch into the living room to join everyone. While Ronin was being antsy and Audrey was being bossy for her turn, I sat next to a tired Nikko and heard him quietly say the word on the page: Gorilla. I did a double-take and interrupted Denis so that we could listen to Nikko say it again. When I pointed to the next word, Nikko said, "Tiger." Denis and I looked at each other incredulously and gave out enthusiastic high-fives, to each other as well as to the kids. We were not expecting Nikko to READ sight words alongside his siblings! The last word I could get him to read was Dog(s), and then I could see he was tuckering out. I was brimming with pride, and very intent on working on more words in the near future.

Today a snowstorm hit the midwest and will continue throughout the evening. I took Ronin and Audrey out to shovel and play in the snow before Nikko came home. The kids were outside for a good hour before the bus came, and I wondered if they could sustain playing outside further. Of course, they were ecstatic about the snow and wanted Nikko to come home to play with them. After getting Nikko off the bus, we rushed inside to change into his boots and snowpants. He easily transitioned outdoors and loved to lay on his back to make snow angels. Nikko also liked packing the snow at the bottom of the backyard slide and laying on it. When it was time to go inside, he asked me, "Go swimming?" I think he wanted to continue swimming in the snow. I said time to go inside, and he didn't protest. Later on, while helping him go to the bathroom, he looked at me and asked again, "Go swimming?" This time he moved his arms in swimmers' strokes. I laughed, but told him all finished, tomorrow.

Monday, January 9, 2012


After every meal at the kids' table, I tell them to ask to be excused and to bring their plates to the kitchen counter. They're still short so I have to watch them walk over and not over-tilt their plates onto the counter. Ronin and Audrey often ask to be excused while they are in mid-flight toward the living room. Other times they forget entirely and I am shouting at them to ask for their release.

I never required this behavior of Nikko. At least not right away. I showed him how to bring his plate to the counter and many times he'd be distracted and race off. His version of wanting to leave the table was either to leave, or to say, "All finished."

On one of the Signing Time DVDs they teach you how to sign "May I be excused?" Nikko used to laugh when seeing/hearing that phrase. This morning he used it very appropriately, as I have seen glimpses of this use over the past month.

He looked up at me from his listening headphones (music therapy every morning) and said, "All finished." I came over to remove his headphones. He said, "May I be excused?" and took his plate to the counter. I said he could go and he happily trotted off. I was beaming. Looked like normal behavior to me. ;)

Sunday, January 8, 2012

Two separate words

At dinnertime on Thursday, Nikko came up to me with an empty cup.

"What does Nikko want?" I asked.

He thrust his cup toward me with a sidelong glance. I repeated my question and he didn't retract his arm.

"What does Nikko want? What IS that?" I asked, pointing to his cup.

Nikko signed Apple with his fist to his cheek and said, "Apple."

He signed Juice with his hand in a C mimicking drinking and said, "Juice."

"Oh," I exclaimed, "You want apple juice! No problem."

He ran away and I gave him a refill. I was really proud that he was able to sign in conjunction with speaking, and put two words together. I thought he would glob them together as "applejuice" but clearly he understands that they are two separate words.

Again, it's the little things. Awesome.

Wednesday, January 4, 2012

Mastered X

2nd day back at school for Nikko. He had a cough but no fever or drippy nose, so I wonder if this is going to develop into something. I really hope not!

OT - Did well writing name! Working on refining the "K". Gave Mrs. S sensory diet ideas in a.m. before break to do first thing as winter time lends itself to more sedentary activities. Also worked on IPAD - Doodle Buddy & Touch Sight Words.

According to his discrete trials sheet, he has mastered identifying lower case letters, identifying #s 11-20 and writing his name (with modifications- highlighted letters). I'll have to ask them what the next goals are, or if they are following a goal sheet, or if they are tailoring it to his IEP. I'm happy to see his progress. It also seems he does better when his trials are in the morning vs. the afternoon, when his attention starts to wane.

Tuesday, January 3, 2012


Yesterday, Nikko looked up at the daily schedule on the wall that I forgot to change from New Year's Day. We went to my sister's house for lunch and my in-law's house for dinner.

He looked up at me and said, "Tita Atz house, all done?" (That's my sister's house)

"Yes, Nikko, you're right."

"Lola's house, all done?"

"Yes, Nikko, you're right!"

Pretty cool.