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. =)

12 comments:

  1. Annaka-I love the way you've dealt with this! I can't believe how nice you were to that lady on the plane. Seriously. Thank you so much for sharing your experiences and being so open about the difficulties and joys of being Nami's mom. We love you guys and pray for you always.

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    1. Thanks Keeley! We appreciate you guys and miss seeing you!

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  2. Hi Annaka, I'm Jordan, (Ben's friend) Wow what a great read. Thanks for sharing your experiences and what cute kids you have. My 4yr old son Isaac has autism and shares many of the stimming behaviors your son has. I was reliving our own airplane experience when you described yours. Our son screamed and yelled for 4 hours from SLC to Atlanta, and it was one of the most stressful moments my wife and I have had, especially since we didn't have seats next to each other on the flight. We were also surrounded by many ignorant people but fortunately had a few "angels" help us out as well. There's many blessings from having a child with special needs, and empathy and respect for other families that go through similar challenges is one of them. Anyway, thanks again for sharing and best wishes for you, Nami, and the rest of your family!

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    1. Hi Jordan, Thanks for sharing your thoughts! I think I emailed with your wife about our sons (if your wife is Jandee). We should definitely keep in touch! Maybe our kids can have a play-date to practice being around other kids. =)

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  3. Hi Annaka! April told me about your blog and I have been reading it, getting all caught up on your life and learning a lot! I always knew you were amazing, but now I see what a true super-woman you are! Your story on the plane stresses me out and makes me so mad just reading it. I for sure would have said a few more choice words to the rude people. I do appreciate you speaking out about it, I realize how I have been like the judgmental and ignorant people in your story, and now I will try my best to be like the angel :) I plan to see you in a couple weeks, right? Can't wait!
    Steph

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    1. I love you Steph and can't wait to see you soon!

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  4. She's just lucky I wasn't there! :)

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    1. I would have loved to see what you would have done! There's no one Nami loves more than you birthday girl!

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  5. What an amazing post. I love the fact that you made the cards, but it makes me sad that a human instinct is to behave that way. We should give all parents and kids a little space and understanding. Being a parent is never an easy task, and when you have a child who self stimulates (we do as well) it makes people uncomfortable. It's to bad they can't just understand that they have their own quirks and the child isn't judging them for it. Thank you for writing such an amazing post, I appreciate all the work that went into it - and I appreciate you speaking up. We look forward to following your blog.

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    1. Thank you so much for your kind words! I don't know what your situation is, but I find it difficult because I guess people think my child should be able to act "normal" (whatever that even means) because he doesn't have anything that physically alerts people to his challenges. I feel a lot of people staring at me and then I get the feeling that they're thinking, "Why doesn't she control her child?" It makes it very difficult to go out in public.

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  6. This is my favorite post yet. As someone who is always annoyed by fellow passengers (especially the nice ones who try to start conversations), I feel inspired to forsake my inconsiderate ways and become an "angel" of travel. Thank you! (your bro Jon)

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    1. Thanks Jon! And, I know you're always the nice passenger, even if you don't feel like being one.

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