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.