A Day in the Life

A Day in the Life of Nikko – July 2017

Morning

·      Nikko wakes up and jumps down from his bunk bed, moves to the living room and picks up right where he left off the night before: looking at YouTube on his phone. He doesn’t change out of his pajamas until I mention it or go to his drawer and pick out some shorts. I let him pick out his own shirt. He can dress himself, but I may need to point out that his waistband needs adjusting.

·      Breakfast for Nikko starts with his medication: 2 Abilify, 2 Sertraline, 1 Allegra, wash down with Minute Maid fruit punch. His meals vary, but this month they are croissants with chocolate chips, OR pasta ravioli from Costco with red sauce (jarred).

·      It’s the 2^nd half of summer, so Nikko goes to summer school. We walk to the bus stop and his head swoops down to sniff my shoulder. It’s an idiosyncrasy that he has been doing for a few months. He’s loud, in a good mood, saying phrases from a random episode of Thomas the Tank Engine.

Afternoon

·      I stand on the bus corner and Nikko gets dropped off. He’s happy, loud, swoops down to sniff my shoulder, squeals in delight and gallops ahead of me for a few concrete seams. Once inside he goes straight to the bathroom to pee. For lunch this week he has been asking for pizza bagels, a meal I reintroduced to him because I was running out of options. Lunches and dinners are the same. They have been a combination of mac and cheese from Auntie Anne’s or made from scratch by Denis; plain hamburgers on plain buns, with the buns heated in the microwave but NOT toasted; pasta ravioli, the breakfast concoction from above; Teriyaki Chicken meatballs from Mariano’s; Ramen soup with 2 eggs, at times; and now, pizza bagels. He can help me prep them, actually. Nikko likes helping with cooking, especially making mashed potatoes, brownies, and pizza bagels. Fruit punch accompanies all meals.

·      After lunch, he trots off to grab his phone and plop down on the couch, watching YouTube.

·      On Thursdays, we have speech therapy.

·      Nikko has been opening the front door and checking for packages from Amazon. He went through a phase where he was waiting for a variety of DVDs to arrive and add to his overflowing collection. Every time a box arrived, no matter whom the box belonged, Nikko wanted to open it.

·      At snack time, Nikko usually had a bag of Pirate’s Booty cheese puffs. He would vary it with a brownie or chocolate chip cookie. A package of fruit snacks was often devoured as well.

·      Nikko likes to put on his Crocs and go outside. He never takes off wandering down the block. Instead, he stands near the curb and plucks the bark off the front yard tree, or stands on the manhole cover. He will take a shovel and dig in the dirt underneath our front picture window. Nikko likes to be outdoors, on his terms.

Evening

·      Inner is usually around 6pm. Same meal choices as lunch. By this time of the day he may have been asking me a million times, “Where’s Daddy?” Nikko wanted to know if Denis was coming home “at night” which meant the sky was dark, or “at day” which mean that the sky was still light outside.

·      At 7:30 I would give Nikko his “Mucinex” cocktail: 2 melatonin gummies and 1 clonodine. Then Nikko would go get his pajamas and head to the bathroom to brush his teeth. Then he would get in the tub, but first scoop any hairs out of the tub. Nikko can give himself a bath.

·      By 8:30 Nikko would be drowsy, so I’d tell him that it was time to go to bed. He’d gather his 2 blankets, Buddy Bear stuffed animal, and two stuffed frogs. As a family, we’d do thankfuls together, then Denis would say a prayer. Nikko would have two small camping lanterns in his bed. He would wait to hear me turn on the humidifier in his room before passing out.

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·      Some nights, Nikko would sleep straight until 7ish the next morning. But some nights Nikko might get up to use the bathroom, or would wake up around 5:30 and decide he was getting up. Sometimes he’d fall back asleep on the couch. And then we’d start all over again in the morning.

Our estate planning attorney asked us to write a typical day in Nikko's life. This is only a glimpse

of what any given summer day is like for Nikko. 

Winter Break

Since we upped Nikko's Abilify script, his meltdowns have decreased from daily to maybe twice a week, depending on his triggers. We saw Dr. Keck on Wednesday and we agreed that maybe we could increase the Zoloft a bit to counteract the OCD behaviors he's displaying, especially the verbal hostage games he does to me, which drive me batty. We'll see if it works. 

This winter break overall has been up and down, up because it's the holidays, but down because Nikko's outbursts and early wakings have angered Ronin and exhaust me. Here's to hoping that the Zoloft will help him chill out.

Music to soothe

Nikko's speech therapist had used a listening program with Nikko in the past where we'd have him listen (with headphones) to a CD that had various kinds of music that sounded like it "fizzed" in certain points. The sounds vibrated a little, and each CD was geared differently. I went along with the program because honestly, when you're trying out different therapies for your kid, anything's worth a shot. I thought Nikko was pretty indifferent to the music therapy. It neither harmed nor hurt him, nor did I see him get agitated from it. I also didn't see any gains that I could attribute straight toward music therapy. We took a break from the program after maybe two years.

We have switched occupational therapists over the years, and the latest one we are seeing right now suggested an app that was geared toward music therapy again. This time, you can play it from your phone without headphones. I sat on the idea for two weeks, but tonight I decided to cough up the $16.99 and check out the recommended song on this app called Vital Sounds (Quickshift). The second I started playing the song, Nikko hovered over my phone, listening. To me, it sounds like plain, adult contemporary music-- smooth jazz, even. It reminds me of elevator/waiting room music. And yet... maybe it reminds him of the music that he's listening during OT, but he is literally sitting by my phone, just listening. I am watching him watch the phone. He is captivated. 

I forget that I should be addressing all sensory avenues with Nikko. He's totally visual, but his auditory processing is probably very stimulated by these music therapy-associated songs. I shouldn't discount them.

Roller Coaster

I cried because Nikko had a terrible day at school yesterday. Horrible meltdowns.

I cried because Nikko had a better day at school today. No meltdowns.

That would be the autism roller coaster we've been riding lately.

Last night I witnessed the worse meltdown Nikko has ever had at home. The weeks and days have been worsening as a whole, but the apex of this trip occurred during the nighttime prayers and tuck-in for the kids. Nikko was mumbling strange scripts at a feverish pace, peppered with whining and tongue clicks. His movements were jerky and tic-like. I could see him squirming and starting to coil his legs in a kangaroo-jumping stance. In the middle of the darkened room illuminated by an LED night light, Nikko stood up and tearfully started screaming. His fists clenched as he beat his legs. I ushered him out of the little kids' room and took him to his own room where he started pounding at his arms and shoulders with his fists. I tried to block one of his punches and his fist landed on the back of my hand with a hard thud. I couldn't believe he wasn't expressing how much he was hurting himself, but I was also shocked how loud and blood-curdling his screams were, as if there was something inside of him trying to get out. I held him as close as I could, tried to give his arms and back some deep-pressure strokes, tried to cradle his head from the violent rocking, and grabbed his wrists from behind so he would stop hitting himself. Nikko pounded his feet on the wooden floor and kicked at anything in front of him, screaming, screaming. Between screams I faced him and told him in a calm voice that I was there, that he was safe, that he was going to be OK. I kept putting my arms around him as best I could. He was still rambling in tongues throughout this meltdown, and I think he tired of my monotone reassurance and said, "Go to bed!" That meant he wanted to lie down in his bed, finally. I helped him get his preferred blankets and Buddy Bear around him, listening to Thomas and Percy and Bertie and Word World and The Lego Movie roll off his tongue in an effort to get out of his head. He was calming down. I turned out the light and knelt by his bedside with my cell phone flashlight nearby on low. I thought about his teachers and aides and what they must have dealt with today at school. Was this the same intensity that they witnessed? Did they stare at him in horror? My poor, poor Nikko had raged as if a demon was ripping its way through him, and he couldn't tell anyone how he felt. I think my heart broke into a million pieces. 

This morning I was hoping that his mood would have settled, but the demon was still lurking. Nikko had a few screaming and jumping moments after breakfast as I packed lunches for school, but he stopped pacing and asked, "Can you help with computer? Please [prompted]?" I really hesitated to let him have screen time, but we were leaving for school in 15 minutes so I relented. He scooted up in his seat to stare intently at Sid the Science kid clips on YouTube, and then.... the mask lifted... he laughed... the clouds parted and all was right with the world again. Sunny Nikko came out and while his scripting didn't stop, he didn't have any meltdowns today. I haven't shed this many tears within 24 hours in a long time.

Back to OT

After a year without OT (Occupational Therapy) thanks to an unfortunate insurance switch, we got approved to get an OT eval for services again. Nikko's previous OT didn't seem to be a good fit (imo) and I'm so happy that this new OT has more of a background in autism and ABA. I just got the initial OT eval back and one section, the results/implications section, summarized everything:

"[Nikko] is a sweet 7 year old boy who demonstrates deficits in proximal control and stability, core strength, sensory processing, social interaction and engagement, body awareness, motor planning, fine motor skills and visual motor skills. These deficits are impacting his ability to function at an age appropriate level across environments."

That preeeeeetty much sounds like he's a mess! But in all honesty, it's very true. These reports are hard to digest initially, especially when they are littered with negatives e.g. "scored very low", "significant difficulty following auditory directives", "definite difference range", and I play the What If game for a little while, but then I kick myself in the pants and keep looking forward. He has a lot of things in which he must learn to cope and to overcome. He probably has more sensory needs than ever before. To his credit, Nikko has improved quite a bit over the past year, and his support team has improved as well. I think we're in much better shape than before, to handle all the hurdles that are looming on the horizon.

School Update

So where did I leave off?

Nikko turned seven in July. Wow. He's not a little toddler anymore. He's getting a little taller, more solid, more curious. He's also putting his hands down the front of his pants a lot. Someone told me to look out for early signs of puberty and I think I put my fingers in my ears and said, "Lalalalalalalalalalala!" I cannot fathom that next phase, so I'm going to shelve it for now.

He had summer school at the same place he'll be at for 2nd-5th grade, as well as the same teacher. She is pretty awesome. She is knowledgeable about autism and isn't scared or perplexed at Nikko's behaviors. Instead of asking me what they should do about them, she offers suggestions and seems proactive. We have had good correspondence via email thus far and I am so grateful. Nikko is in the SOAR (Structured Opportunities for Academics and Responsibilities) program. There are only five students in his classroom. One would call it an inclusion class. All I know is that it is the best environment thus far for Nikko to thrive. They take as many sensory breaks as he needs to help him come down from his meltdowns. They have a big sensory room with a Wii. They listen to Enya.

I'm also grateful for the two wonderful aides in his class. I've talked to them and they have the biggest hearts. For example, Nikko's been pretty picky with his lunches at school. He's not a cold food kind of kid. I looked high and low for a thermos that would sufficiently hold mac and cheese, not leak, and yet be hot. I thought I had success, but his refusal to eat it because it was "warm" became apparent. One day he told the aide, "Oven, please!" He wanted his food to be hot, so they did it. I started sending in a paper bowl with mac cheese and he's been mostly happy with that.

Upon exploring other heat-up food options, one of his aides said to me, "Don't worry, send anything in. We'll heat it up, it's absolutely no trouble."

"Ok, but I don't want to break the rules, like heat up food if you're not supposed to for other kids."

She shrugged her shoulders and said, "Our little guys don't need to follow the rules."

I loved her for that. They would do whatever they could to make the environment happy for those kids. Of course there is learning as well as discrete trials, and Nikko has had more green days than yellow days. But there are still yellow days, and he is a mystery at times. We've been working with each other to figure out things that trigger Nikko into meltdowns, but on some days I am resigned to admit that I just can't predict what Nikko is going to do anymore. Still, we'll keep trying and observing and hope he will get whatever is irking him out of his system more quickly each time.

His annual IEP meeting is next month and I am curious to hear what they are going to propose for his new goals. This year has been different in that Nikko never brought home any homework. I wasn't used to this, since last year he had spelling tests and a math worksheet that I'd battle with him to complete. His teacher is of the strong belief that the kids in her room work so hard every single day, focusing on the tasks at school, that they are most likely tired at the end of the day and should rest. I still pressed for something tangible and she helped make sure that Nikko had a math and a reading app on his iPad. Nikko isn't really thrilled to do any of the math, but we do it anyway. It's eye opening to work with him and feel helpless because he won't focus with me like he does at school. I'm fortunate that I can directly ask his teacher for pointers on how to go over a lesson. I'd like to mirror what they do at school to what should be done at home.

Learning how to work with Nikko's new team has not been a struggle. They are fantastic people. Learning how to adjust my expectations has been the biggest adjustment of all.

Say my name, say my name

A few times during the week, Nikko will wake up between 11:30pm-1:00am, bolt out of bed and come looking for me to put him back to bed. Last night I told my husband that I wanted to take a quick shower before Nikko woke up. As I prepared my bathroom stuff, I heard Nikko fling open his bedroom door. Denis said he'd go sit with Nikko so I could go shower, so I turned around and went back to my business. Throughout my shower I could hear Nikko crying and getting upset because I wasn't the one in the room with him. I heard Nikko reciting phrases from movies and whining. As I finished up in the bathroom I heard him say, "Mommy! Mommy! Mommy!"

That is the first time I have ever heard him call me Mommy independently, wanting me to come to him or needing my help. My heart softened and I hurried to relieve Denis so that I could be with Nikko to settle him back to sleep.

Nikko has said Mommy by rote when being prompted to say good bye, and he learned how to announce "MommyIgopoopoopotty" because that's the phrase I taught him to say when he ran toward the bathroom to do #2. And that's exactly how he says it, in one long sentence. But I felt differently when I heard him call out for me from the bedroom. It's been six years and I have never heard him call for me by name. Until last night. This is from a kid who does most of his talking during weekly speech therapy sessions, who can't tell me how his day at camp went, and who wanders back into his own little world while I try to pull him out long enough to get a few homework sheets completed.  Nikko saying "Mommy" was awesome because it means so much more than just one word: he verbally acknowledged my existence (that in of itself is huge), he knew what he wanted and expressed it with tone and feelings attached, he said Mommy instead of crying, whining or dropping to the floor in defiance, and he did something so neurotypical, so normal when he doesn't usually do what's normal or age appropriate.

I wonder when he'll say it again.

1st Grade Jungle Music Program

Tonight was Nikko’s 1^st grade school musical. Jungle Music was the theme. Nikko had to wear a bright colored solid t-shirt, black pants, black socks and black shoes. A trip to Target earlier in the week solved the black clothing and I was happy that he fit into a very nice pair of dress shoes (he outgrew the socks and shoes he wore a year ago in San Francisco). I didn’t know what to expect when we sat in the school gym waiting for the 1^st grade classes to line up on the bleachers. Mom and Dad made a trip out to see him and I was happy that they came. The teachers led the kids into the gym and I saw that Nikko was standing on the 2^nd tier of risers farthest away from us. I took my phone for pictures and video, got up and scurried to the other side of the room. Nikko saw me and constantly turned to look at me. I ended up standing right next to Mrs. McCarthy, which was one of Nikko’s teachers from Circle of Friends –and one of my favorite people.

I wondered if Nikko would wander away from his spot on the risers but he only took two or three side steps out of place and wandered back. His teachers were a few feet away looking out for him. Out of all the songs I heard on the program, I think I saw his mouth move to The Lion Sleeps Tonight. He would watch his peers to see what hand movements they were doing, if they were stomping their feet or if they were lifting up their masks to cover their faces. Nikko did some random arm movements of his own as well. I was surprised when he and a few other kids were shuffled to the very front and center of the group, holding egg-sized shakers. He didn’t bolt, didn’t jump around and didn’t deviate from the group. Victory!

And then… at the end of a song, since he was standing a foot away from a floor microphone, Nikko stepped forward and said into the microphone, “Hewww-wooooowww” in a low, hearty voice. I started laughing as did Mrs. McCarthy. That’s my boy! Luckily, Nikko didn’t continue to speak into the microphone and they were ushered back to the 2^nd tier.

After the performance, I went to retrieve Nikko from the classroom in which I dropped him off. He was sitting next to his classmate Matthew. When Matthew saw me, he immediately turned to Nikko, tapped him on the arm and urged him to go to me. Nikko wasn’t paying attention but Matthew was being helpful and stayed by his side. I was very touched so I thanked Matthew for being so nice to Nikko. It breaks my heart that Nikko won’t always have nice people around to help him out in chaotic situations, so I really try to thank those who do act nicely toward him. Matthew is a gem.

I was really happy with Nikko and his behavior in the musical. I was so proud that he was able to stay in place and mimic the movements. I am relieved that he didn’t get frustrated or anxious about anything and start to have a meltdown.  A little over 100 kids were in the musical and Nikko was the only one flapping his arms randomly. There was one other child that’s in Nikko’s special ed class that reflected some special needs as well, but it made me sad to know that Nikko stood out when he wasn’t paying attention to his peers. I am hoping that as he matures, he’ll want to participate more and develop the language necessary to form relationships. It was a great night for Nikko overall.  

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.

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.

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.

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. :)

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.

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.

Independent potty visit!

BEHIND..........

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!

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.

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.