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.