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Wednesday, October 4, 2017

Good Attendance

I recently thought about a "perfect attendance" plaque that was awarded to my mother, many years ago when she was employed at Picatinny Arsenal, in New Jersey. I believe she had a perfect attendance for just over one year. However, she never bragged to me about her achievement. My guess is that she just didn't think about it. She just woke up each day and went to work.

I'm also thinking about her today, because today marks 27 years to the day she passed. I've been quite open with both Bubs 1 and Bubs 2 about their "Grandma Kathy." In fact, we're at a point now where both bubs offer me their undivided attention whenever I decide to share a story about my mom.

Grandma Kathy circa late 1970's
As Bubs 1's mom and I continue to teach him how to approach social situations so to appropriately respond to them, I find that my sharing about my mom to be an effective teaching tool. Bubs 1 does recognize the feelings that accompany a "sad story" and offers proper social responses... even if it just means to simply listen with good eye contact. I find this to be a win-win situation, because, well, I enjoy talking about my mom to both bubs 1 and 2.

I don't want to scare both bubs with horror stories about how she passed from cancer, but I do want to share the humanity. I share with them about the times that I held my mom's hand, when she asked me to, while she suffered the effects of her chemotherapy treatments, but I don't lament on the "day in and day out" suffering she experienced. I also share the happy times with my mom - before her cancer diagnosis. For example, like when my mom and I would drive long distances, back-n-forth between my grandmother's house and our home. After my father moved out of our house, my mom and I made many trips to grandma's house. For my mom, she was trying to deal with her divorce from my dad. For me, it was the construction of memories that evidenced strength and determination in the face of utter fear... some would call this "survival." Throughout all of our travels, my mom and I had many conversations and I share some of her stories with Bubs 1 and Bubs 2. They love to hear them.

Near the end of my mom's life, she ended up taking too many "sick days" due to the toll that the cancer took on her. She told me that her co-workers were offering up their accumulated sick days so that she could still get paid, while dealing with her disease. I remember her expression when she told me about this. It was both embarrassed, but yet thankful... at the same time.

Through these stories, both bubs 1 and 2 are learning about their "Grandma Kathy" whom they've never met. I guess it's a good thing, but it's also seems sad at the same time. I always make sure to end on a positive note and with something they can "take away" from these stories. 

"Good attendance is important," I tell them. They'll understand one day.       

Saturday, September 16, 2017

ADHD too? Sure, add it on.

Bubs 1 continues to improve. 

Since my last post here, Bubs 1 was also diagnosed with ADHD. Not uncommon for kids on the Autism spectrum. His mom and I had our suspicions, as did his teachers, counselors, friends - and so on. He was recently dismissed from an after-school program for "aggressive behavior" and this created some quick planning for mom and I to reschedule our work schedules so for one of us to now pick him up at school dismissal. I work on Saturdays now so to shore up my lost hours, during the week. 

That's ok. I used to work on Saturdays all of the time back when I was food serving and bartending. Back then, for more than 12 years, weekends were part of my "work week." Now I get to spend a couple hours in a comfy office. Like I said, I'm ok with this. In fact, I bring Bubs 1 along. He sits on a couch in my office and plays on his Ipad. Not a bad deal, because he and Bubs 2 only get Ipad time twice a day for no more
than 30 to 45 minutes. I use the phrase "... for no more than..." because it's always not enough for these two guys. They love their Ipad time. Mom and I just be sure to keep it's value so that we can use it to leverage what we want from both bubs, which is "expected behavior" (ABA language).

Although life with Bubs 1's Autism has been improving month-to-month, his mom and I recently dealt with a period of intense arguing from Bubs 1. It was so unavoidable that I recall begging Bubs 1's mom for us to investigate a medication solution to help his ADHD. We both always believed that his ADHD seemed to be more of an issue, than his PDD-NOS. However, I can't say that I knew where one began and other one ended. So we saw his doctor and discussed the idea of trying meds on Bubs 1. After some cursory Internet research, I found smart points on both sides of the medication debate for kids with attention deficit disorders. Luckily for us, Bubs 1's doctor suggested incremental steps and mentioned a new "medical food" that seemed to be effective for another patient of his. He suggested we give it a shot before any stimulants. Bubs 1's mom and I agreed.

Two-plus months later and Bubs 1 seems to have significantly improved. He takes a non-drug, medical food called Vayarin which is some sort of super omega 3 that is specifically designed for ADHD individuals and helping them with their lipid imbalances. Does it work? Well, we're still working with a counselor on this, but let's just say that I'm not begging for stimulants anymore.

Most of the professionals, in the field who work with Bubs 1, tell us they've never heard of this medical food. Even my flex health account argued with me for two weeks about paying for Vayarin. "Does it need a dr's prescription?" they kept asking. "Yes, it does," I kept answering. Finally, they unfroze my flex visa card and approved it. 

Now I just have to contact the other medical bill providers and explain why I'm paying them so late. Some haven't been waiting so patiently for their money, while I've been struggling with my health flex peeps... but Bubs 1's mom and I are used to it by now... unfortunately.  

Link to a great blog I just discovered. 

Sunday, October 25, 2015

One Kid. One Task. One Strategy.

"Dad," Bubs 2 hung his head over me as I woke up the other morning. "For lunch, I want a pickle. Oh yeah, I want more chips too." He informed of his lunch menu before I even had a chance to yawn and stretch after a night's sleep.

I got up and prepared both bubs lunches for the day. I added a pickle and "more chips" to Bubs 2's lunch, because I had his little voice in my head telling me to do so.

He loves pickles and so does Bubs 1. I do too. Bubs 1 told me to get some pickles a few days earlier. I did. We did actually. On our way home from picking up Bubs 2 at his preschool, both bubs' and I discussed pickles.

We pick up Bubs 2 and strap him into the car. We head back home. "(Bubs 2)," his brother said, " Dad is bringing us to buy pickles."

 "Yeah. Yeah! That's a good idea!" exclaimed Bubs 2. "Dad, let's buy three jars of pickles," Bubs 1 told me. "Yeah! That's a gweat idea!" Bubs 2 chimed in again.

It was an uneventful car ride, which is always a good thing. Sadly, we only bought two jars of pickles.

I have said this before and I'll keep saying it again and again. Bubs 2 is a piece of cake. He has his terrible three moments, but I know that I can rein him in. Like other neurotypical kids, Bubs 2 can challenge his mom and I all day sometimes, but nothing to the extremes that his big brother goes to. 

I had a "Bubs 1 epiphany" today. Or, I should say another Bubs 1 epiphany. I have to start numbering these epiphanies, because they are almost weekly now. I also need to write them down (like on this blog), because it's hard to remember them all.

I am programmed to use the same method to solve a problem. A pretty straight forward approach. It's like following a recipe or using the old-school payphones. For the latter, just drop in a quarter and it works every time.There's no need to guess or try another way.

Bubs 1 doesn't operate like that. In staying with the payphone  metaphor, Bubs 1 sometimes takes quarters. Sometimes he only take dimes. Sometimes he only takes nickels. And sometimes he only takes pennies. He just never tells us which coin he accepting on any given task requested of him.

I recently told Bubs 1 that I'm giving him 40 seconds to get dressed. This is on the heels of multiple other failed strategies for him to get dressed. Most of the latter were met with Bubs 1 doing everything else but getting dressed. I thought of this idea from a past article, which encouraged allowing Autistic children additional time to engage a task. The article didn't say to count out loud, but I did.  I walked away from his bedroom counting so not to micromanage (although I was). 

It worked!

Although this strategy doesn't work for other tasks I want Bubs 1 to complete, it does, at least for now, seem to work for getting dressed/changed in his bedroom. I attempted to apply this same strategy so to get him started on his homework (which has always been a monumental challenge), but it backfired. Instead of jumping to his homework, he just screamed to the top of his lungs. "Dad! Stop counting me! I won't do this if you count me!"

Note to self: to get Bubs 1 dressed/changed count to 40. To get Bubs 1 to complete his homework, don't count to 40.

Well, I just ate the last pickle from the last pickle jar in the fridge. It's a quiet victory, but I will take it.

Sunday, May 5, 2013

Good Day for Running

 Going out for a hike was not on my agenda yesterday morning, but the bubs' mom suggested it. I'm glad that she did, because it was a beautiful day. Although it was a little chilly for just short sleeves, I survived.

They ventured out first while I hung back in the parking lot, inside the car. My blood sugar was low and I was waiting for the ham and cheese sandwich and chocolate chip cookie to ''kick in.'' I sat there in the car and watched my continuing-blood-glucose monitoring system send data to my insulin pump. Slowly, but surely, my blood sugar was rising... 61... five minutes later it was 67... another five minutes later it was 73. I wanted to wait until my blood sugar was at a safe level before exercising, since exercising lowers it. To help raise it, I didn't deliver a new bolus (insulin that you take to cover the food that you eat) so that time wouldn't be an issue. I knew that we weren't planning on hiking too long. I also knew that I would be running, as well as walking, so I wasn't concerned about it spiking on me.

I fell asleep and soon woke myself up from my own snoring. I glanced down at my pump and saw that it had climbed to 100. I decided to get going, because I calculated that I must have been snoozing for at least 20 minutes and I didn't want the family to get too far ahead of me. Plus, I didn't want to fall back asleep and miss the whole hike.
Bubs 1 in March '12

Bubs 2 in May '13
I started running down the path and eventually caught up with them about 15 minutes later. They were almost to our favorite spot, but mom was waiting for Bubs 1' break to finish. Apparently, he decided that he was tired and took a seat on a nearby rock.

The run warmed me up so I didn't feel the chilly breeze as much. I put Bubs 1 on my shoulders and continued down the path. We all arrived to our favorite spot and I realized that Bubs 2 was now big enough to walk/run the boardwalk, which is this narrow strip of wooden walkway as you enter a rocky beach front. I had been clicking pictures of Bubs 1 running on this boardwalk for over the past couple of years.
It's become tradition to click some pics of the little guy running on it. Now it's time to get Bubs 2 running on it. He did and I captured his initiation to our somehow-constructed

Here are a few of my collection. Enjoy.

Saturday, April 27, 2013

First Karate Lesson

PDD-NOS certainly is a pervasive developmental disorder.  I sometimes forget that Bubs 1 has this diagnosis, but it's there. He is a typical four-year old most of the time and that fools his mom and me into thinking that - just maybe - all those professionals made an error on his high-functioning ASD diagnosis. I sometimes wish that they had made an error. Although, we also love the bubs just the way he is.

Bubs 1 recently had his first karate lesson, which didn't quite play out as well as his mom and I had hoped it would. Bubs 1's mom and I hoped that karate would be an activity that he instantly liked. We had read a blurb on how karate helped kids with high-functioning autism participate successfully with neurotypical kids their age. Here it is:

As Bubs 1's parents, his mom and I were likely looking for a seemless transition, but perhaps our expectations were too high. In order to 'warm him up' to the idea of taking karate lessons, we began planting the seeds a couple of days before hand. It seemed to work. The bubs soon adopted our idea that he try karate. He even began demonstrating some quasi-karate moves and kicks. Where did he learn this? We don't know, but he did show interest and this was all that we needed to see.

I wasn't at the karate lesson, because I was at work. His mom took him. I just heard about it after. When his mom explained "how it went" she likened her experience to our experience when Bubs 1 took gymnastics, about a year ago. That painted a clear picture in my mind. Bubs 1's mom shared more.

She said that he was doing well in some areas, but struggling in others. For example, he excitedly  and willingly performed many of the running exercises, but when the karate instructors wanted the bubs to simply make a fist and punch, he had trouble following their request. His mom said that this is when Bubs 1 started to get frustrated. She and I know that when he gets frustrated that he sometimes turns to "odd" behavior. He also becomes rigid. I put the term odd in quotes, because it is obvious and typically goes against the grain. Then the mind games begin when we begin assuming that we know why the other parents are staring, when the reality is that we do not. Other people's stares could be simply empathy and not harsh judgement. However, we sometimes move with the indoctrination of our assumptions and associate their stares with the latter. So when the bub's mom was informing me of some of his odd behavior, i.e. making spitting noises and hitting his head with his new Gi belt, it led me to thinking about the negative thoughts.

The karate instructors were warm, understanding and patient with the bubs. Bubs 1's mom even told me how the other kids, the bub's peers, were even helpful to him. They would help verbally guide him through some of the exercises and simply shrug when he didn't follow their directions. It just seems like a good place for the bubs to be as he learns about the world around him. It is also hard to watch and hear about, because I wish he didn't have to experience struggle (but that's a worry that all parents deal with). The karate instructors convinced Bubs 1's mom that they wanted the bubs back for a second lesson. They said that they're even willing to work with him one-on-one.

We don't want to give in to our fears and allow the bubs to give up. However, we also don't want to scar(e) the bubs. If I've learned anything from my own life thus far, it is knowing that the many bridges in our lives may allow us to cross them for free on one side, but will also likely tax us traveling the other side.

Sunday, April 21, 2013

Bubs 2 and his Food

Bubs 2 eats with the appetite of three bubs.

He'll eat anything. He'll even demand some of my food if it is different than what he is already snacking on.

He owns the kitchen. He acts like he knows where all the food is located in the kitchen too. Although his words are garbled (usually because he has a mouth full of food), I inherently understand what he trying to say as he spits fire at me, with his hand pointing. He just points to the counter top assuming that there is something good there. It doesn't matter what it is.

He just wants to eat it.

Today, he screamed at me as he tried to reach for some uncooked potatoes. I was dicing them up for dinner. I knew he wouldn't like them, but I gave him a piece anyway. I felt like a serving wench at Medieval Times restaurant. He ate the raw potato after I tossed it onto his high chair table. He gave me a look and then he smiled. I couldn't believe it. I was also dicing up some raw onion, but I stopped myself. I didn't want to put him through the agony, because I knew that he'd eat the onion too. When he just about 10 months old, he ate an entire meatball sub at his cousin's marching band performance. This kid's going to be an animal.

In saying this, I should also say that I completely understand. I have always had a big appetite myself. I remember eating two Burger King Whoppers when I was over my aunt and uncle's house. I was ten years old. My aunt exclaimed, "Wow, that's some appetite." I then proceeded to down my large fries too.

I still have a big appetite. My wife has to hide her favorite foods around the kitchen so that I won't devour it all. Bubs 2 must be watching me eat. I'm his role model right now. Luckily I'm eating smarter than I did when I was a kid. I haven't had two Whoppers, in one sitting, since that time. However, I did continue to eat a whole lot of other junk. I'm into salads now, but haven't thought to give Bubs 2 any. I'm not sure why, I guess I am assuming that he won't like lettuce. Maybe I'm thinking that it is too much of a choking hazard for him? I've already had to pull food from his mouth on a few occasions, because he packs it until his cheeks bulge.

All this writing about food has gotten me hungry. I think I'll see what's in the fridge. The bubs is asleep now. That means the coast is clear.

The kitchen is mine again.

Thursday, April 4, 2013

Good Questions. Keep Them Coming.

Bubs 1 asked, ''Does the sun sleep in the clouds?'' That's a good question.

I am always wondering what the bubs is thinking. He doesn't share his thoughts all that often, but when he does, he asks some damn good questions. I do my best to be an active listener, because there was a period of his life when he wasn't saying a thing. As I look back, especially now that Bubs 2 is here, I'm beginning to realize that Bubs 1 was also quiet in other areas of his life. Bubs 1 didn't have the bounce, that his little brother has, when he was Bubs 2's age. Their mom and I understand that siblings can be different, but this isn't that.

It was at his second-year checkup, when his pediatrician asked his mom and me, ''How many words is he saying?'' Bubs 1's mom and I starred at each other. We wanted to quickly say that he knows over 60 words in sign language, but that wasn't the question. Bubs 1 was only saying two or three words at that stage, but the bench mark called from many more.

His pediatrician offered us the phone number to Birth to Three so that we could have the bubs assessed for developmental issues. A week later we learned that he had a speech delay, which can be an indicator of autism. Sure enough, one year later there was a diagnosis of borderline PDD-NOS.

His mom dived in and called everybody. She accessed, and continues to access, all the resources available for Bubs 1. Not too long after working with him, Bubs 1's ''talking'' began to increase leaps and bounds. My guess is that he was struggling to get the words out, but couldn't. We had to push him to do it. The help we found taught the bubs, and his mom and me, how to encourage his talking - even demand it.

I've likely said the phrase, ''Use your words'' to Bubs 1 a hundred billion times, over the past two years.  He finally did. I feel lucky. Bubs 1 is filling his gaps successfully and gaining ground on his peers. He impresses his pre-school teachers with his clever vocabulary. He is expanding on his imagination. He will pretend too.

I remember watching Bubs 1 on a local playground. He must have been two and a half. He was standing with other kids on the play scape. I watched him struggle to communicate with the other kids. He didn't have the words. Instead, he yelled. The other kids just starred at him. Bubs 1 was acting "different." That's why his mom and I didn't question his ASD diagnosis that, which we learned a few months later.

A few weekends ago, and nearly two years later, we found ourselves on another playground. I clicked a picture, which captured me. It holds all the words written on this blog post. It's one of my favorites, because it shows how well Bubs 1 is progressing. He gives Bubs 2 all the attention that his little brother demands, including pushing him on the swing. It helps Bubs 1 to have Bubs 2 around. Bubs 1 is currently teaching his little brother about "sight words" and colors, on the Amazon Kindle. What better way is there to understand something than to simply apply what you've learned? Their mom wanted to have Bubs 2, because she wanted Bubs 1 to have a best friend.

I think it worked.
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