Underwear!

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.

HOORAY!!!!

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.

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.

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.)

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.

Guilt

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?

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.

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.