Wednesday, January 30, 2013

STIMMING



Self-Stimulating Behaviors or "Stimming" Definition: Self-stimulating behaviors or "stimming" are stereotyped or repetitive movements or posturing of the body. They include mannerisms of the hands (such as handflapping, finger twisting or flicking, rubbing, or wringing hands), body (such as rocking, swaying, or pacing), and odd posturing (such as posturing of the fingers, hands, or arms). Sometimes they involve objects such as tossing string in the air or twisting pieces of lint. These mannerisms may appear not to have any meaning or function, although they may have significance for the child, such as providing sensory stimulation (also referred to as self-stimulating behavior), communicating to avoid demands, or request a desired object or attention, or soothing when wary or anxious. These repetitive mannerisms are common in children with ASD [Autism Spectrum Disorders]. (source: http://www.autismspeaks.org/what-autism/video-glossary/glossary-terms)

Every time we let Nami out of his bedroom in the morning he runs straight to his place on the couch (where he doesn’t let anyone sit) and starts rocking back and forth and waving his hands quickly in front of his eyes. He’s not worried about eating, saying hi, getting his usually-sopping-wet diaper changed, or anything else for that matter. Sometimes when Nami wakes up at 4 in the morning, we just let him play in his room until 6 or so, when we feel we can get up for the day. Nami will lay on his floor and kick the door until we let him out…yes, sometimes for two hours straight. We have learned to partially sleep through the banging so that we can somewhat function the next day. He darts right past us the second the door opens. It seems like Nami’s desire to stim is so strong that he can’t calm down until he gets to do it. Nami has many self-stimulating behaviors:
  • Rocking
  • Waving hands
  • Spinning anything and everything
  • Flinging door-stoppers
  • Aggressively shaking objects back and forth in front of his face
  • Putting things in his mouth
  • Staring at lights
  • Watching fans spin
  • Rubbing his fingers together
  • Rubbing his lips
  • Making all sorts of vocal sounds
Many times Nami's hands are blurred in pictures


Sometimes Nami’s stimming behaviors are worse than others. All Nami wanted to do last week was to stim and I was too tired to stop him. He didn’t talk much, he didn’t eat much, he didn’t move off his spot on the couch much. He would just rock and rock and rock while saying, “uhhUHH uhhhUHHH uhhhUhhh”. He was having constant seizures. His days were spent seizing, then rocking, then seizing then rocking, then seizing, then rocking……

Why does stimming, or self-stimulation happen? Researchers have suggested various reasons for why a person may engage in stereotypic behaviors. One set of theories suggests that these behaviors provide the person with sensory stimulation (i.e., the person's sense is hyposensitive). Due to some dysfunctional system in the brain or periphery, the body craves stimulation; and thus, the person engages in these behaviors to excite or arouse the nervous system. One specific theory states that these behaviors release beta-endorphins in the body (endogeneous opiate-like substances) and provides the person with some form of internal pleasure. 

Another set of theories states that these behaviors are exhibited to calm a person (i.e., the person's sense is hypersensitive). That is, the environment is too stimulating and the person is in a state of sensory-overload. As a result, the individual engages in these behaviors to block-out the over-stimulating environment; and his/her attention becomes focused inwardly.

Researchers have also shown that stereotypic behaviors interfere with attention and learning. Interestingly, these behaviors are often effective positive reinforcers if a person is allowed to engage in these behaviors after completing a task. (source: http://www.autism-help.org/behavior-stimming-autism.htm)

These explanations clarify WHY Nami spends so much time stimming. It is a tiring thing to try to redirect Nami when he does this. It would take a constant effort throughout the day to keep Nami from stimming. Many times I just let Nami stim because it is the only break I get. He will not watch television or play with toys (unless he can stim off of them). I never thought I’d see the day where I WANTED a child of mine to watch television! I allow Nami to stim under certain circumstances such as when I really need to get something done, when he’s in his room going to sleep, when we’re at the hospital or doctor’s appointments or when we are in public. If I don’t allow Nami to stim in public, he will often throw big tantrums and sometimes get violent. I always get nervous taking Nami in public places because I never know what’s going to happen…with him or to him.

In April of last year, Salesi and I took our two boys to Boston in order for Nami to participate in a study that looks at Autism in children with Tuberous Sclerosis. I was terrified to say the least. An entire plane ride with Nami seemed impossible! I spent days preparing treats, activities and toys that Nami could stim off of. We had a layover on our way there, so both times we got on the plane I tried to make sure we could be one of the first on the plane. Getting Nami settled before there is a big crowd of people pushing everywhere is better for EVERYONE. The first time we boarded, the airline staff was so helpful. They allowed us on early which gave us time to get Nami settled before it was too crowded. 

The second time we boarded was a nightmare. I have flown quite a bit in my life and I have always heard airlines announce something like the following after the first-class boarded: “Those who have small children or need extra time may now board”. This statement never came for the second flight. I went to ask the guy at the gate, who glared at me, then my children, if we could board. He told me we couldn't board yet. I explained that we had always been allowed to board planes first with our kids. He replied that this was NEVER how things worked on that airline. I was confused as we had just gotten off a plane from the same airline and they let us board first. Instead of protesting more we waited for our zone to be called so we could board. As we worked our way to the gate the same guy refused our entry again! He rudely stated, “People with kids can’t get on until after everyone else has boarded.” I was so shocked I couldn’t respond. I just sat their anxiously while everyone boarded the plane.
We were nearly the last people entering the plane, so all those before us had already stored their carry-ons. We had front-row seating because of Nami’s autism and medical concerns, but there was absolutely no place to put any of our carry-ons. As we entered, the passengers who had plenty of time to board and get settled seemed to all be glaring at us…maybe because we brought kids on? All the overhead bins near us were full and there was no under-the-seat storage for the front row. There was a family of four sitting behind us, across both sides of the aisle. I saw them board first (I think because they were business class), so I knew they had first dibs on storage options for their carry-ons. All the storage places at their feet were empty, so I asked the mother behind me if I could use the empty place under my seat to place one bag. She said, “no”.

I had Salesi take all our carry-ons farther back except the one that had all of Nami’s stuff in it. I searched the overhead bins again and saw a jacket laying there. I moved it over a couple inches so that our backpack would fit. The lady across the aisle stood up right after, took the backpack down, held it in the air in front of me and said, “This bag is smashing my husband’s jacket”. Tears started swelling in my eyes. I thought, “DON’T THESE PEOPLE KNOW THAT I AM TRYING TO MAKE THIS FLIGHT BEARABLE FOR THEM?!?!?!?!” (Oh man, I’m getting anxiety just thinking about this again!) I was stunned and just stood there holding my bag in the aisle, not knowing what to do. All the while, the flight attendants were trying to hurry us into our seats because we were the only ones not settled. Another lady a couple rows back stood up and pointed to a bag in the bin above me and asked the passengers, “Is this anyone’s bag?” No one answered, so she turned to me and said, “Here, we can put this bag back here.” Then she took my backpack out of my hands and placed it above my head. I don’t know what would have happened if this angel hadn’t intervened!

I had been so flustered this whole time and Nami could feel it. The moment I sat him down he started rocking back and forth, back and forth. I was grateful he wasn’t screaming like he initially did on our first flight. Once I was able to sit, I buried my head and bawled. I cried as we took off and for a few minutes after, all the while Nami was rocking and Salesi was holding Kope. About a ½ hour into our flight Nami was still rocking. He was humming all the tones that he could hear the plane engines making. He was almost asleep and I was grateful that I would finally get to relax. Then I got a tap on my shoulder. I turned and the lady behind me said in a fake nice voice, “I would appreciate it if you’d make your son stop rocking.” I felt like screaming, “YOU IDIOT! HE WOULD BE A TANTRUMING MESS IF HE WASN’T ROCKING!!!” Instead I politely replied, “I’m sorry but he has hundreds of tumors on his brain and I can’t control his behavior”. This wasn’t the most brilliant statement I’d ever made. She scoffed and sat back in her seat as my tears started up all over again. 

After the experience on the plane I began to fear that everyone was annoyed by Nami’s stimming behavior. My younger brother, Geoff, recently spoke to a group of people about goal-setting. The following is an excerpt of what he said, relating Nami’s stimming behaviors to the topic: 

Over the past year or so a series of experiences have led me to think about what I wanted out of life more seriously than ever. One of these experiences I would like to share with you. It is about one of the most amazing people I know, my three-year-old nephew…Nami. I don’t often use the word cute but this boy is cute as well as handsome. For those who have had the privilege of meeting him, I don’t believe there has been a heart he didn’t melt and a face he didn’t cause to smile. He is the happiest person I have ever met.  He is one of the greatest blessings to my family and me.

Nami’s parents have also been through a lot in order to raise this awesome person. Nami was born with TSC, which stands for tuberous sclerosis complex. TSC has caused tumors to grow on all of his organs. Nami battles autism and infantile spasms. He has countless seizures a day that have threatened his life and severely slowed his mental development. He has stellar parents, who have been on top of seizing every opportunity to help their son. About a year ago he started having [intense therapy] to help him to progress. 

One of the things Nami loves to do is to spin things. He will tip anything with a wheel, on its side so the wheel hangs freely in the air and spin the wheel with his hand repeatedly. Though this may seem like a harmless activity, it actually hinders his mental development. The hours he spends spinning something are hours robbing his brain of beneficial activities that would help him develop. Without any intervention, Nami would probably spin things for hours each day. My family was instructed that one of the ways they could help is to redirect his attention to doing something beneficial such as: help him do a puzzle, encourage other kids to interact with him, help him say new words, or read a book with him. Anytime Nami began spinning something that was the family’s queue to intervene.

Without a doubt in my mind his parents are responsible for Nami’s progress. With the help of family and therapists Nami’s parents have helped Nami make tremendous progress. He knows a handful of words and is making progress. Though his life will be different from the way you or I are able to live, he has had a remarkable impact on my life. His obsession with spinning wheels has caused me to regularly think what things do I engage in that prevent me from growing spiritually, mentally, physically, and socially. This year I have set goals to help me regulate the time I spend on these unfulfilling activities. I know that I will be greatly rewarded in my life if I learn how to redirect unfulfilling time towards something productive. And I will be forever grateful to Nami for this powerful lesson he has taught me. 
I will never be able to adequately express my gratitude for my family. I appreciate Geoff’s perspective about Nami’s stimming. I love to watch him as he patiently and lovingly interacts with Nami. I’m thankful that he, along with the rest of my family see Nami as the blessing that he is and that they constantly support us through our hardships.

Since the plane incident, I leave the house prepared with the following cards to hand out: 

Hi, my name is Nami. I have a disease called Tuberous Sclerosis Complex (TSC) which causes tumors to grow on my vital body organs. I have hundreds of brain tumors, heart tumors, kidney tumors and cysts and an eye tumor. One of the many difficulties TSC causes me is autism which greatly impacts my behavior. My parents work very hard to help me behave but it is difficult for me. I also have epilepsy. Feel free to read more about me at afteritsoaksin.blogspot.com 


Luckily I haven’t had to use them since. =)

Thursday, January 24, 2013

LOVE AT FIRST DIALOGUE














My husband recently returned from a 2 ½ week visit to his family in Tonga where he enjoyed the beautiful sun, sandy beaches and delicious food. He came home looking very healthy and dark from the sun and it reminded me of when we first met. Because of this, I've decided to reflect on our story a bit more. Besides, my post An Unlikely Union quickly became one of my most viewed posts. I guess because my husband is way cool or something?


I attended a small university in Hawaii for most of my college education during the late 1990s. When I was there, the campus comprised approximately 2200 students with over 70 cultures represented. Imagine that…a student body so few in number yet so diverse! There were bound to be countless misunderstandings and breaking of cultural norms. I, being the natural anthropologically-minded person that I am, had a hay day observing interactions between students. I was in culture heaven. I loved listening to all the different languages spoken and learning to identify each one. I worked at the Polynesian Cultural Center (PCC, probably my favorite job ever) and interacted with tourists from all around the world. At one point I was a tour guide, so I learned all I could about each country represented in the center and thoroughly enjoyed sharing my new-found knowledge with the tour groups. I majored in Inter-Cultural Studies with an emphasis in Anthropology. I was part of the second class at the school earning this degree. I think there were only six of us, the first class only had one student. I loved all my professors in the major and was completely taken in by the subjects they taught. I was a bookworm (I was not a fast reader but I LOVED learning). In some of my classes we were assigned almost 1 book/week to read in addition to the textbook. My co-students thought I was crazy because I read every word of every book. I took notebooks and notebooks full of notes. I studied about 8 hours a day. I didn’t date much and my only reprieve was to go visit my sister and her family who lived in Honolulu (her husband was the quarterback of the university football team).

Soon after I started college in Hawaii, I became good friends with a girl from Samoa. We met while working, making and selling pineapple delights at PCC, and quickly realized our dorm rooms were nearly right next to each other. My friendship with her introduced me to the Samoan culture and I quickly knew who most of the Samoans on campus were. We were opposite in a lot of ways. I was antisocial and shy. She was very outgoing and seemed to know everyone on campus and they knew her, including all the Tongan guys. So I thought I knew who all them were even though most of them didn't know me. Apparently, I did not.

During my final semester in Hawaii, I finally decided to move off campus which was a difficult decision given that most of my friends were international students and had to live on campus. I moved into a house that I shared with 8 other girls. I knew who a few of them were, but I didn’t know any of them well. Within the first week of being back at school after summer break, some Tongan guys had come to visit some of my housemates. Apparently one of the guys was “taken” by me as he watched me out on the lanai, talking to my family on the phone. Can’t you just picture this…so romantic! (Joke…the situation just sounds so corny so I had to throw that in.) After seeing me outside, he tried to get me to come and sit by him to watch a movie with him and a bunch of other people in our living room. I finally relented and sat for about 2 minutes before being bored with the Disney show they were watching and left. He turned to one of my housemates and said, “What did you do? Why did you make her leave?”
Later this guy tried to get another one of my housemates to ask me out for him. I was NOT going to be tricked by the attention I was receiving from this Tongan. I knew better. I thought, “He’s just kidding around and has no intention of really taking me out.” I had lived on this campus for two years by then and and because of my major in anthropology I was always observing cultural norms. I knew that dating norms differed from culture to culture. I had no prior experience dating a Tongan, but many Tongans who already had girlfriends had been really friendly and flirtatious with girls from the mainland (what mainland U.S. is called there). Many Tongan guys had even approached me thinking I was a “new girl” and didn’t know them. The fact was that I was just socially awkward (still am) and a huge nerd (not smart, just weird) and they hadn’t noticed that I’d already lived on campus for a year and a half! Like I said, my Samoan friend was friends with all of them, so I had seen them talking often and knew who most of them were. When I observed many of them not telling girls their real names or ages and some pretending not to have girlfriends when they did, I felt I needed to be cautious. Now, not all Tongan guys did this, but I’d observed enough of a pattern that I decided to do some research.

When my housemate came to me and told me that this guy had asked her to ask me out for him, I told her, “You go tell him that if he comes up with a real plan and asks me out himself, MAYBE I will say yes” to which she obliged. It took him a couple days to build up the courage to come and ask me out. When he arrived he was shaking. He tried to act interested in the Samoan homework I was doing, which I know he had no interest in at all. He asked what I was doing that weekend and I told him, “I’m going to watch my brother-in-law’s football game in town.” He said, “Oh, so you’re not going to be around?” I said, “I will be on Friday, but not on Saturday”. He asked if I would go to a movie with him on Friday night. He assured me that he had a car lined up so we could drive to town and we would double with one of my roommates and his friend. I said, “Sure,” still not fully believing that it would happen.
Over the next few days, I tried to figure out more about this Salesi guy. I went to my Samoan friend who told me, “There are only two Salesis. One is a cheerleader and one used to date _____ (our former co-worker).” To be honest, neither of those sounded like good options to me. I didn’t want to date the ex-boyfriend of someone I had known for two years, and I didn’t want to date a cheerleader because I felt I was too shy. After further investigation, I concluded that it was the Salesi that was _____’s ex-boyfriend. I decided that I could go on the one date since I'd already said yes and then call it good there.

Friday afternoon arrived and I hadn’t heard from Salesi since he asked me out on Tuesday. I made preparations to go hang out with one of my good friends who lived on Laie Point. I was just getting ready to leave with her when Salesi popped in the house. He looked a little concerned, seeing that I was leaving the house. He said, “Are we still going tonight?” I said, “I don’t know, are we?” He said, “Yes, I just gotta go get the car and I’ll be back at 6:30.” Going to the Point was called off and I got ready for the date instead. I still didn’t believe 100% that it was going to happen. 6:30 came around and no Salesi. Shortly after, I received a message from him that his friend needed to keep his car, so he was trying to find another car. The hours started ticking by and still no Salesi. He kept having his friend who was doubling with us call his date, my housemate, and explain that they were still coming.

At 9:00 an embarrassed Salesi arrived. He explained that he couldn’t get a car that we could drive to town. You see, Hawaii is filled with clunker cars that barely run. Many of them do not have current registration and they just get passed around from person to person to get places that are close by. A clunker was the only car Salesi could obtain, so our date would have to remain within a few miles of campus. He asked if we could try the local theater. I thought, “Let’s just get this date over with” and I said, “okay”. We didn’t like the option of the one movie playing there, so we decided to walk on the beach instead. We drove to Sunset Beach and ended up sitting and talking for a couple hours. There was never a dull moment and we conversed with ease. This shocked me. Although it was not love at first sight (for me anyway =), it was definitely a strong liking at first conversing! After all the talking, Salesi asked if he could kiss me. I set aside my annoyance that he asked and said, “Yes”. To kiss on our first date meant that I was REALLY liking this guy. Shortly after, we went to a dance on campus which lasted until 1:30 am. We danced a lot but also ended up spending more time outside sitting on the curb and talking. I couldn’t believe that we weren’t running out of things to say. I think we may have gone to the ever-so-famous Chevron near campus to get a snack after the dance before he brought me home.
That was it...I was a goner. Our relationship had begun. I went to the football game but came home on Sunday. Salesi and I spent nearly all day, every day together for the next few weeks. I’m sure Salesi’s version of our meeting is much different than mine, but I assure you mine is the correct one. After knowing Salesi for 13 ½ years, it is really shocking to me that he actually followed through with this date. I am surprised that he just didn’t show up after the car thing didn’t work out and then avoid me forever after. I guess because it was meant to be that he pushed through a type of situation that he consistently tends to avoid. I’m glad he pushed through any awkwardness he felt and made it to our first date!

Thursday, January 17, 2013

LEARNING TO BREATHE



This past week there has been a weight on my chest making it difficult…almost impossible to breathe. I felt exactly where I was a few months ago: ravenously hungry, sore all over, paralyzed, OUT OF CONTROL. I started asking myself, “How did I get back here? I’ve taken steps to get help. I am openly accepting help from others for the first time in my life. I feel like I’ve been moving in the right direction to manage my life, and yet I find myself back to square one.” Yet today, somehow, my head feels clearer again, enabling me to finish this post that I started months ago.

When people hear about what we’re dealing with, they often ask me, “How do you do it?” To be honest, I don’t want to do it and I don’t know how I do it. Most days I feel like I’m not doing it. A couple weeks ago Nami spit out some of his anti-epileptic meds at me. I had no idea how much he spit out and because he’s at the max dose I didn’t dare try to guess how much more to give him. It ended up being a very bad seizure day with a seizure every few minutes. Many of his seizures lasted a couple minutes and were on the scary side. As the day went on, he became very cold. His lips were purple and his hands and feet like icicles. There was nothing I could do to warm him up. When I asked our pediatrician (my dad) about it, he said that seizures could cause Nami to be this cold. I couldn’t believe that all this happened from just missing part of one dose of medicine. Even though on Nami’s best days he still has about 20-40 seizures, this experience made me realize how much worse off he would be without all the medication. It also made me desire brain surgery for him even more.

The journey down the road to possible brain surgery started in September when many of Nami’s doctors gathered for a conference with me to discuss Nami’s care. It was overwhelming to be there, talking with each doctor and trying to figure out the care Nami needed for each affected organ. While discussing his brain, we talked about the option for brain surgery in more depth than ever before. As we talked I felt for the first time that this may be the route we could go.

Starting to seriously consider brain surgery for our son introduced me to panic attacks. It was a Sunday night in October, before Nami went in for his first hospital stay for testing (a 72 hour video EEG), that Salesi and I decided that we both felt like if the tests showed surgery was an option for Nami, we would do it. We both felt like that was a good decision. As I tried to sleep that night, panic set in. There was so much pressure on my chest. I couldn’t breathe. I told myself, “You just have to work one day this week. You can get through this.” I talked myself into going to work after a sleepless night. The pressure and difficulty breathing continued at school (I teach). I tried to hide my discomfort from my students while I barely made it through the lessons. It took every ounce of my will to stay sitting upright on my stool. I didn’t dare move an inch. Throughout the day I calmly explained to each class that we would be doing brain testing for my son that week and that I’d be out for a few days. I asked if they would be patient with me while going through this process. I have the BEST students! They have been patient, mature, thoughtful, hard-working and SO MUCH FUN!

I made it through the first three of four classes and despite feeling like I was going to explode, the lessons seemed to go well. Lunch is after 3rd period and at that time I went to my friend in the front office and collapsed. I couldn’t breathe. I couldn’t walk. I just sat hunched over on her floor and cried and cried and cried. She told me she was taking me right home. My irrational self said, “No, I have to teach one more period.” She said, “No, you are going home right now.” The front office staff scrambled and found a way to help me out with my 4th period class. Miraculously, my sister called me at that moment and I just sobbed incomprehensibly to her. She said she was on her way to get me. She picked me up at the school and took me home. I spent the next few hours lying in the fetal position on my bed. I was in so much pain. My head was pulsing, I couldn’t breathe and I couldn’t move. I took a sleeping pill, a sumatriptan for my headache, and anything else I thought might help. It took me 4 days and a lot of medicine before I felt I had recovered. Three of those days were spent in the hospital with Nami. I watched as the doctors made him seize, just enough, so they could detect if there was a “hot spot” where most the seizure activity was coming from. I’m sure going through that impacted the length of my recovery.

The panic attacks have continued, but none as severe as the first one. After the first one I quickly got in to see one of my new doctors and he helped me manage my new condition. Over the past decade, I have had to shed my belief that taking medicine makes you weak. After this experience I was beyond worrying about any negative stigmas attached to certain medications and I went full force into trying to get through this. For now, medicine is helping me function. It’s weird, because I remember times when I was growing up when I thought, “How can someone lose complete control of their body?” Although I grew more empathetic in my late teen and adult years, I had never experienced anything that would make me really know what it was like. Well, now I know. I am learning to breathe through the next day, sometimes hour, or even minute. Sometimes that’s all I can do to get through.
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