I Wish I Were Engulfed in Flames: My Insane Life Raising Two Boys with Autism by Jeni Decker (2011). Extended Book Review with < My Thoughts > by Sara Luker.
Excerpts from the book – (1% indicates location in the Kindle version of the book, instead of page numbers).
Excerpts from Jeni’s book with < My Thoughts > by Sara Luker.
1% “Stars!” “Stars?” “Stars, yes.” When Jaxson smiles, he lights up a room. Other times, he resembles the devil incarnate.
“Stars?” It went back and forth like that for two minutes. He wanted something from me and if I couldn’t figure out what he wanted, in the next twenty seconds or so, shit would be hitting the fan – or the walls. Biting hitting, screaming, kicking – any or all of the above were imminent.
He was doing his part – he was asking. I just wasn’t equal to the task. I had no idea what stars meant in his strange little world.
“Stars!” I could see the urgency bubbling up within him. He tilted his head, thinking a minute, the synapses firing in his special brain. “DS?” he inquired.
“DS? You want your Nintendo DS?” He wanted his game! “DS, please.” What stars had to do with DS I had no idea. But you have to love an autistic kid who can still use the word please.
Excerpts from the book – (1% indicates location in the Kindle version of the book, instead of page numbers).
Excerpts from Jeni’s book with < My Thoughts > by Sara Luker.
1% “Stars!” “Stars?” “Stars, yes.” When Jaxson smiles, he lights up a room. Other times, he resembles the devil incarnate.
“Stars?” It went back and forth like that for two minutes. He wanted something from me and if I couldn’t figure out what he wanted, in the next twenty seconds or so, shit would be hitting the fan – or the walls. Biting hitting, screaming, kicking – any or all of the above were imminent.
He was doing his part – he was asking. I just wasn’t equal to the task. I had no idea what stars meant in his strange little world.
“Stars!” I could see the urgency bubbling up within him. He tilted his head, thinking a minute, the synapses firing in his special brain. “DS?” he inquired.
“DS? You want your Nintendo DS?” He wanted his game! “DS, please.” What stars had to do with DS I had no idea. But you have to love an autistic kid who can still use the word please.
< My Thoughts > “Nintendo DS?”
On the Nintendo website, www.nintendo.com, they tell us that ‘star coins’ can be earned at all levels of the Nintendo DS game. Could it have been ‘star coins’ that Jaxson connected with as a way to communicate that he wanted to play his Nintendo DS?
And, what was the game’s attraction for Jaxson? Probably, as for many players, the chance to interact with the world through action games without leaving the comfort of his room. For the autistic child, if it improved eye-hand coordination, and possibly even gave him some better spatial orientation, this could have been a very good thing for him to do. Possibly, even a motivating reward to be used for behavior modification.
1% I grabbed his face, covering it with kisses as he pulled away. He was happy I finally understood him, but not as pleased with the sudden facial attention. That’s another issue, being touched. He doesn’t like it much. I do it anyway.
I’d earned the right, after nine months of morning sickness and an all-night labor session; you should be able to kiss a kid as much as you want.
< My Thoughts > “...being touched...”
Coming up behind Sonny and touching him, or even speaking to him when he doesn't know you are there can cause a 'startle response'. Perhaps it is because he stays in his 'own world', most of the time, that this occurs.
Sicile-Kira, C. (2014) tells us that a typical characteristic of children with autism is “to become stiff when held, does not like to be touched." She tells us that this usually indicates that their 'tactile sense' is out of whack.”
Note: For further information on 'tactile sense', go to MENU for Know Autism, Know Your Child with < My Thoughts > by Sara Luker. Read online here, under UNIT 4 – When Is It Sensory? CHAPTER 1 Sensory Issues, PART 1., a. Sensory Defensiveness, b. Sensory Avoidance.
Sicile-Kira, C. (2014) also tells us that when interviewing world renown autism self-advocate Temple Grandin, she recalled that, “From as far back as I can remember, I always hated to be hugged. It was just too overwhelming. Being touched triggered flight, it flipped my circuit breaker. I was overloaded and would have to escape, often by jerking away suddenly.”
2% The next problem was that Jake, Jaxson’s older brother, had the DS. Earlier, Jake had thrown his own DS against the wall and it broke, so he’d taken to his room with the only other one in the house.
Yes, I know. I can hear the judgmental sighs and see the eyes rolling now. Don’t criticize me till you’ve lived in my private Idaho, where things are likely to come flying across the room at any
moment, whacking you in the temple.
Jaxson is my second son. Jake is my first son, who also has autism. Jake also can’t tell a lie. Whenever he does something bad, he tells me about it immediately. For this reason, I think all people should have a touch of autism. Truth in advertising – you know what you’re getting.
Meyer, R., Root, A., et al. (2016) tell is the “much of a child’s social life is built around imagination, trickery, deceit, and the dynamics of telling and keeping secrets.” Children with autism have this missing piece because they prefer the role of one who is predictable and compulsively truthful. “They are frank in their descriptions of people and events; brutally so.”
< My Thoughts > "...can’t tell a lie."
Also, probably because children with autism are usually 'literal thinkers'.
3% “Jake! Bring me the DS!” I screamed. It’s a perfect snapshot of my life. Bob and weave, baby. Bob and weave.
I straddle Jaxson, holding his wrists down, hoping he’ll calm down enough so that I can get off him. I need an Ibuprofen. He’s in the middle of one of his tantrums and he’s all over the place – one moment kicking me in the stomach, the next moment patting me on the head.
3% Then I take a head-butt to the nose and its lights out for a few seconds. Tiny white specs flood my field of vision and I crumple to the floor with son still clinging to me. I start sobbing and don’t stop for a good half hour. I’ve disappeared into myself like a snail pulling back into its protective shell. So that’s what post-traumatic stress looks like.
< My Thoughts > “…one moment kicking...”
Sonny is on medication designed to ease sudden extreme, hysterical emotional outbursts of laughter or crying, accompanying head-butting and kicking. According to the prescribing physician, children with autism often cry or act angry when they really are not. Who knew? The reverse is also true. They may happy when they are sad or upset and run around laughing. These sudden, involuntary outbursts are very scary for parents and child. Fortunately, Sonny has a med for that. Just so you know, my motto is 'no pills without skills'. We do have visual supports and teach him skills to ease pain.
3% This is me, Jeni: I’m a five-foot nuthin’, one hundred and …ahem pounds – a roly-poly, forty something, Rubenesque bon-bon of a gal often described as cute but never sexy.
I have two autistic children, an Australian shepherd named Sugar, and an albino frog named Humbert-Humbert. I’ve also got a husband, but he is sort of a bit player in the melodrama that is my life. The frog gets more screen time than he does.
6% I headed off to find out what was broken in the other room, hoping Jaxson didn’t need stitches.
“Mom, who is more irritating, me or Jaxson?” I stood over a broken Christmas bulb on the kitchen floor.
“You both have your moments,” I told Jake. “What do I do that’s as bad as his fits?”
“You ask a lot of questions. Questions, questions, questions. Questions are good, but sometimes when they’re coming as fast and furious as you ask them, it feels like getting hit with one of your brother’s little fists. Or a stun gun.”
“I guess I’m just bi-curious,” said Jake. I smiled. “Where did you hear that word?” “On TV somewhere,” Jake said as he picked up a few shards of red glass.
< My Thoughts > "Questions, questions, questions.”
My ‘educated’ guess about the constant question asking is as follows – Constant questions needing to be answered could be a bid for adult attention. Autistics showing signs of Obsessive-Compulsive Disorder (OCD) sometimes have thoughts that won’t go away. Then, it may be comforting saying repetitive words or sing-songy words, over and over. Or, continually checking on something may become their daily mantra or ritual. Perhaps questioning is a way of communicating and connecting with the adults in their world, by asking never-ending questions.
Ruzzano, L., Borsboom, D., et al. (2015) state that there are recent efforts to “unraveling the nature of relationship between autism and associated disorders.” “Our aim is to explore and understand psychological disorders as well as to identify which repetitive behaviors interact in autism and compare this to Obsessive-Compulsive Disorder (OCD).”
6% At last, I was finally able to sit in the rocking chair with Jaxson and make nice. Usually, when he realized he isn’t going to get his way, there is a hurricane of dysfunctional behavior followed by a self-imposed time out, then him hugging me and crying, eventually leading to, “Better, Ruby?” “Yes Max, all better,”
He calls me Ruby and I call him Max, something that started when I began mimicking the voice of the cartoon character on Max and Ruby, one of his favorite shows.
“Good job, Ruby.” Jaxson smiled and used his little fingers to push the downturned corners of my mouth up into a smile.
Autistic people often have a problem matching a facial expression with a corresponding emotion. Jake regularly had to consult the Chart of Expressions on his special needs classroom wall in order to know what someone he was talking to might be feeling inside.
Grossman, R., Tager-Flusberg, H. (2012) tell us that there is some correlation between the “degree of social impairment, and the ability to determine what dynamic facial expressions mean.” Their pilot study showed that participants found it most difficult to differentiate between “the properties of surprise and those of a happy expression.” Participants learned that teen with their mouths in an open position were in a state of high intensity of anger, sadness, and surprise. While teens with closed mouths were experiencing an emotion of lesser intensity.
< My Thoughts > “…dynamic facial expressions....”
Before anyone can 'learn' a new concept, one must have some idea to tie it to. You have to already have a place to put it in your mind. A schema, a frame of reference. For the child with autism, there probably isn't any frame of reference for 'facial expressions'. No place to put it. Nor, do they see the need for learning about facial expressions, because they have no natural 'social communication' interest.
7% My husband was having “issues” coming to terms with his children’s autism; especially at Christmastime. “Well, I’d take them out, but they don’t like doing anything.”
My response wasn’t exactly full of Christmas cheer. “Correction,” I said “they don’t like doing anything you like.” Jaxson loves playing on the swings. Jake wants to make things in the shed. You will never turn them into the little men you dreamed they’d be, so how about realizing they’re perfect little men just as they are?
< My Thoughts > “...just as they are?”
Parents may need process the fact that their child has autism. Some parents need to grieve the loss of their 'dream child' and accept the child with autism. That child is much more than their autism. It is up to parents to discover and promote who that child is, and the trajectory of their autism.
Yanofsky, J. (2012) says that he doesn’t like to teach his son things that come naturally to other children. That he knows he could be a better husband and father, but life is difficult with his 11 year-old son, and his tantrums drive him crazy.
7% Do you think I like spending hours of my life doing these repetitive, painfully boring things? No. But I do them because they like it. I do it for them, not for me. Some days I wonder just how harshly I’d be judged if I disappeared suddenly, changed my name, and never returned.
Christmas Eve went fairly smoothly after that. Mom and Bob arrived for dinner, presents were revealed, the questions stopped, and there were no more tantrums.
< My Thoughts > "...fairly smoothly..."
Imagine my shock, when taking Sonny into a meeting in a room he had never been in before, in front of people he had never seen before. We were there to discuss his aggressive, even dangerous behavior issues. Attila the Hun sat there like a sweet, peaceful little angel. He sat quietly in a big person's chair, with his feet dangling far from the floor. Like Jeni, I wanted say, “honestly, life is a nightmare, full of tantrums, all day every day!”
That is how autism behavior works against you. When you try to convince the doctor that your child needs something to take the ‘edge’ off. My son’s doctor actually said to me, as Sonny sat peacefully – “It doesn’t seem that he needs anything, but I would be glad to prescribe something for you, Mom.” Give me strength!
11% In elementary school, the counselors tried to solve Jake’s sensory overload by giving him a huge set of noise-reducing headphones. Yeah, that was nice. Now he not only didn’t fit in, but he had a monstrous set of yellow earphones to even further separate him from his peers. He looked like a big, sweaty bumblebee. Eventually they were replaced with orange ear plugs that he now wears in the gym, in the noisy hallways, and often in class. Add a mini bottle of antibacterial gel to his arsenal of protection, and all he needs is a pocket protector and a lisp and he’s right out of central casting for Nerds III. “I am the Walrus, goo goo ga joob.”
Gee, B., Thompson, K., et al. (2013) believe that when sensory processing is impaired it impacts a person’s daily routine. That when the environment is acoustically modified with music, delivered using specialized headphones and a CD player, it can help children with autism cope. Auditory hypersensitivity and abnormal responses to sounds that are neither threatening nor uncomfortable for most can cause behavioral disturbances in people with ASD. While the study states that headphones intervention of playing music may not work for all those trying to cope with sensory processing issues, it seems to work for many.
< My Thoughts > “…specialized headphones...”
As a parent and educator, I am continually aware of filtering 'interventions' through the process of what is ‘age appropriate’. And, I know that getting someone to accept an ‘earbud’ placed in their ear would require a careful learning-acceptance process, over time. Today, everywhere you will see students and adults with that white cord dangling from their ear as they listen to their tunes. So, the 'bumblebee' look would probably be a second choice. But, whatever works.
Note: For further information on ‘sensory integration’, go to MENU for Know Autism, Know Your Child with < My Thoughts > by Sara Luker. Read online here, under UNIT 4 – When Is It Sensory? CHAPTER 3 – Sensory Integration.
12% With Jaxson, it’s different. He’s blissfully unaware of even the concept of social ineptitude. He’s on a stage of his own and we’re all bit players, coming in now and again to offer clothing or food. At nine, he’s just beginning to speak in complete sentences and still wears a diaper.
For those with 'social ineptitude', Bellini, S., Benner, L., et al. (2009) describe Social Skills Training (SST) as ranking the 9th most effective strategy to be taught to people with ASD. It comes well behind “behavioral, language, academic and psychopharmacological interventions.” One of the reasons they state for a not to provide SST is that it is seldom taught across multiple settings. Another objection is that it takes students out of academic time for the 9-week period scheduled. This study does approve of the encouraged ‘self-monitoring’, ‘relaxation techniques’, and ‘emotional regulation’. But again, they mention the pitfalls of the length of the program resulting in a ‘plateau’ effect, although they admit that they’ve seen no ‘dramatic failures’ of this intervention.
12% His inability to communicate with others in a meaningful way makes forming relationships difficult. He’s unaffected by social mores or his lack of appropriate actions because they do not exist within the production in which he is starring. They don’t exist for him yet…
Casenhiser, D., Binns, A., et al. (2015) talk about a Social-Interaction-Based Therapy. This therapy, when successful, increases a child’s functional and appropriate communication. Increasingly it provides the amount of language input/intake and enables the participant to broaden learning opportunities in a group and/or peer setting. Students not only learn the ‘functionality’ of language but they gain the ability to ‘self-regulate’.
Students learn to interact more comfortably, such as asking, “How is your day going?” “Do you have homework tonight?” “Would you like to play a board game with me?” They also learn which questions are appropriate and which are not. For instance, not saying to someone, ”Didn’t you wear that same dress yesterday?” is not thoughtful question and may NOT result in ‘happy face’ emotion.
12% Last night before bed, Jake asked me this: “Mom, in Heaven will I be normal?” Ugh, how do I answer this? And what is the truth? Mommy’s truth isn’t something he’s apt to enjoy…
But bedtime is definitely not the time for pessimism. So what do I answer? “Honey, heaven is whatever each person wants it to be.” “Really?” he asks, rubbing his tired eyes. “Yep, I’m pretty sure.” “I love you, Mom.” “I love you too, buddy. Now go to sleep.” Click. Lights out.
13% From the moment he was born, Jake was never a good sleeper and I had to lie in the bed, my bed (yes, he still sleeps with me, what about it?), and wait for him to fall asleep before disengaging whatever body part of mine was underneath him, and perform a series of stealth movements until I extricated myself from the room to sweet, sweet freedom.
< My Thoughts > “…never a good sleeper.”
The literature suggests many things may be happening here. Sonny’s neurologist suggested hat our guy may be having epilepsy interruptions. We found that one of the new medications we had him on had 'sleeplessness' listed as a possible side-effect. Some parents have found success with ‘weighted blankets.’ Of course, every behaviorist will insist you try a consistent ‘bedtime routine’. Yes, we have that too, turn on music box which also shines pretty colored floaty things on the wall. We turn the lights out twice, cover him with Toy Story blanket; our nighttime ritual. Sometimes it works and sometimes Sonny is determined to pull an all-nighter.
13% Now he has questions. Every night, before he can even try to close his eyes, he asks the same five questions. Here are my responses:
“There are no legendary creatures. The door is double locked. There is a heaven and you’re going there someday. Yes, I’m sure. Yes, I’ll leave the light on in both bathrooms.” “I love you, Mom.” “I love you too, buddy. Now go to sleep.”
22% It was a dark and stormy day. A bad day. No, a really bad day. I wish I were engulfed in flames. Hail Mary, full of grace, is there a flamethrower in the vicinity? And then I heard it, amid the cacophony of screams inside my head and out. “Is there anything I can do to help?”
< My Thoughts > "...is there a flamethrower..."
“I wish I were engulfed in flames.” I can understand this cry for help. Because if one were truly on fire someone would rush to help, every time. But, when you’re dealing with two children with autism, help rarely comes. And yet, there are those special people and special moments.
22% That day, I met an angel at the Rite Aid drugstore. My child was in the middle of a full-on hysteria-inducing temper tantrum because I would not purchase him another camera to replace the one he’d put into the toilet and flushed the night before. The toilet was unscathed – the camera, however, hadn’t been so lucky.
I’d stopped at the drugstore to pick up a new prescription for Jaxson, the third in a series of medications to try and help prevent his aggressive behavior, particularly at school.
23% When I am in the store and my child suddenly rolls into tantrum mode, kicking and screaming and such, it’s not very helpful if a passerby says things like, “He needs is a good spanking,” or “You wouldn’t see my kid acting like that.” I want to say, “Go ahead and hit him, see if it works.” Or, “Bye, honey. This nice man is gonna take you home. Have fun!”
Okay, so I don’t actually do this. But I really, really want to.
24% But, this particular day, as I proceeded to make my way out of Rite Aid…Jaxson pummeled me from behind, sinking his teeth into my arm. My purchases fell from the plastic bag, trailing behind me like Hansel and Gretel’s breadcrumbs.
Then, the angel appeared. Without asking, without my silent pleading eyes meeting hers, she quietly followed me to the parking lot, picking up my prescriptions, hair spray, box of tampons and a bag of Hershey’s kisses, gathering them all up as I maneuvered to press Jaxson against the car with my body, fishing for my keys.
It took ten minutes to unlock the door and push my screaming child inside. I closed the door and stood there for a moment, taking a look at the nice bruise on my arm that was already forming, his little teeth imprints clearly in the center. She handed me the bag and smiled as Jaxson wailed inside the banging on the window, his voice only slightly muffled by the closed windows.
“He’s autistic,” was the only thing I could think of saying. “Yeah, I kind of guessed there was something going on there besides the regular old tantrum. Can you get home okay?” she asked. My eyes filled with tears. “Yes, thanks. You have no idea how nice it is to have someone not judging me right now.” “I think I can guess,” she smiled and then left for her car. That day, I met an angel at the Rite Aid drugstore.
Hoogsteen, L. & Woodgate, R. (2013) have a study that talks about improving the quality of life of families of children with autism living in rural areas. The study reaches parents who ‘live the experience’ and talks about, their thoughts, their feelings, their challenges, their opportunities, and their needs. They felt that their community members were unaware and uneducated about the challenges they faced when bringing their child with them when they shopped or visited in the community.
Such as when the negative characteristics of autism were displayed,– tantrums, yelling, disruptive behavior, meltdowns, screaming, physical violence towards themselves and others. Most people look at you and they just think he’s a bad kid, because he looks normal. What they think they see is bad parenting, a bad uncontrollable child, or just a rude disruption to their shopping experience.
Parents say that “…autism is invisible to the untrained eye, yet visible in ways that people deemed as undesirable.” Observers have no clue about the 'autism', because the child looks perfectly normal. He walks. He talks. He doesn’t have, you know, a stumble or a limp, so you can’t see a physical disability.
< My Thoughts > "...autism is invisible..."
The 'invisibility of autism'. When we lived in a rural area, the community knew who Sonny was, and they were mostly very accepting. I was teaching at the only school in town, so that helped. Still, people were startled, at the store, when our handsome, 'normal' looking Sonny would grab things out of their shopping cart. Or, when he would just happily wheel their whole cart away. We understood his reasoning. Why start over with an empty cart, when you could grab a shopping cart already full?
37% Jaxson is a little genius. I have no proof of this, but I think it might be true. He likes to have three televisions in the house on at all times, each with volumes raised to an ear-splitting decibel level. He doesn’t like being clothed. Every day he gets off the school van, hops inside, and takes of everything he is wearing, except his undies. Rain or shine, summer or winter – Jaxson doesn’t like being dressed.
< My Thoughts > "...three televisions..."
We too, are a ‘three television on at all times’ family. One with Blue’s Clues DVD’s, one with Toy Story DVD’s, and Elmo DVD’s on the third one, (sometimes switched with Thomas the Train or Sonny's favorite Reese Witherspoon or Meg Ryan comedies).
56% I hope my kids look back on their childhood and smile, just like I do when I think of my own childhood. I hope the bad mixes with the good becoming a wonderful stew of memories – I hope I teach them to make the right choices and when they don’t, the consequences aren’t too severe; I hope, and hope, and hope.
56% I am who I am because of how I was raised. For the shy kid who doesn’t have a voice having a bunch around you that are loud and diverse helps to fill in the empty gaps.
My kids have a lot of gaps. I hope I’m loud enough to fill them all.
End of excerpts from this book by Jeni Decker.
< My Thoughts > "End of excerpts..."
Jeni’s book is open, warm, funny, and a little X-rated. Please read it to get the full impact of her very special take on motherhood.
References:
Bellini, S., Benner, L., et al. (2009). A Systematic Approach to Teaching Social Skills to Children with Autism Spectrum Disorders: A Guide for Practitioners; Beyond Behavior; Vol.19 (n1):p. 26-39.
Casenhiser, D., Binns, A., et al. (2015). Measuring & Supporting Language Function for Children with Autism: Evidence from a Randomized Control Trial of a Social-Interaction-Based Therapy. Journal of Autism Developmental Disorders; 45:846-857.
Gee, B., Thompson, K., et al. (2013). Efficacy of a Sound-based Intervention with a Child with an Autism Spectrum Disorder and Auditory Sensory Over-responsivity. Occupational Therapy, International, V21:12-20.
Grossman, R., Tager-Flusberg, H. (2012). “Who Said That?” Matching of Low & High Intensity Emotional Prosody to Facial Expressions by Adolescents with ASD. Journal of Autism Developmental Disorders; 42:2546-2557.
Hoogsteen, L. & Woodgate, R. (2013). The Lived Experience of Parenting a Child With Autism in a Rural Area: Making the Invisible, Visible; Pediatric Nursing; Vol. 39:5.
Meyer, R., Root, A., et al. (2016) article called – Good Withholding & Bad Withholding. Asperger’s Syndrome Grows Up; Retrieved online from http://www.pathfindersforautism.org/articles/view/
asperger-syndrome-grows-up--recognizing-adults-in-todays-challenging-world.
Ruzzano, L., Borsboom, D., et al. (2015). Repetitive behaviors in autism & obsessive-compulsive disorder. Journal of Autism & Developmental Disorders; V45(1):192-202.
Sicile-Kira, C. (2014). Autism Spectrum Disorder (revised): The Complete Guide to Understanding Autism; New York, New York: Penguin Random House Company.
Yanofsky, J. (2012). Bad Animals: A Father’s Accidental Education in Autism; Arcade Publishing; New York, NY.
On the Nintendo website, www.nintendo.com, they tell us that ‘star coins’ can be earned at all levels of the Nintendo DS game. Could it have been ‘star coins’ that Jaxson connected with as a way to communicate that he wanted to play his Nintendo DS?
And, what was the game’s attraction for Jaxson? Probably, as for many players, the chance to interact with the world through action games without leaving the comfort of his room. For the autistic child, if it improved eye-hand coordination, and possibly even gave him some better spatial orientation, this could have been a very good thing for him to do. Possibly, even a motivating reward to be used for behavior modification.
1% I grabbed his face, covering it with kisses as he pulled away. He was happy I finally understood him, but not as pleased with the sudden facial attention. That’s another issue, being touched. He doesn’t like it much. I do it anyway.
I’d earned the right, after nine months of morning sickness and an all-night labor session; you should be able to kiss a kid as much as you want.
< My Thoughts > “...being touched...”
Coming up behind Sonny and touching him, or even speaking to him when he doesn't know you are there can cause a 'startle response'. Perhaps it is because he stays in his 'own world', most of the time, that this occurs.
Sicile-Kira, C. (2014) tells us that a typical characteristic of children with autism is “to become stiff when held, does not like to be touched." She tells us that this usually indicates that their 'tactile sense' is out of whack.”
Note: For further information on 'tactile sense', go to MENU for Know Autism, Know Your Child with < My Thoughts > by Sara Luker. Read online here, under UNIT 4 – When Is It Sensory? CHAPTER 1 Sensory Issues, PART 1., a. Sensory Defensiveness, b. Sensory Avoidance.
Sicile-Kira, C. (2014) also tells us that when interviewing world renown autism self-advocate Temple Grandin, she recalled that, “From as far back as I can remember, I always hated to be hugged. It was just too overwhelming. Being touched triggered flight, it flipped my circuit breaker. I was overloaded and would have to escape, often by jerking away suddenly.”
2% The next problem was that Jake, Jaxson’s older brother, had the DS. Earlier, Jake had thrown his own DS against the wall and it broke, so he’d taken to his room with the only other one in the house.
Yes, I know. I can hear the judgmental sighs and see the eyes rolling now. Don’t criticize me till you’ve lived in my private Idaho, where things are likely to come flying across the room at any
moment, whacking you in the temple.
Jaxson is my second son. Jake is my first son, who also has autism. Jake also can’t tell a lie. Whenever he does something bad, he tells me about it immediately. For this reason, I think all people should have a touch of autism. Truth in advertising – you know what you’re getting.
Meyer, R., Root, A., et al. (2016) tell is the “much of a child’s social life is built around imagination, trickery, deceit, and the dynamics of telling and keeping secrets.” Children with autism have this missing piece because they prefer the role of one who is predictable and compulsively truthful. “They are frank in their descriptions of people and events; brutally so.”
< My Thoughts > "...can’t tell a lie."
Also, probably because children with autism are usually 'literal thinkers'.
3% “Jake! Bring me the DS!” I screamed. It’s a perfect snapshot of my life. Bob and weave, baby. Bob and weave.
I straddle Jaxson, holding his wrists down, hoping he’ll calm down enough so that I can get off him. I need an Ibuprofen. He’s in the middle of one of his tantrums and he’s all over the place – one moment kicking me in the stomach, the next moment patting me on the head.
3% Then I take a head-butt to the nose and its lights out for a few seconds. Tiny white specs flood my field of vision and I crumple to the floor with son still clinging to me. I start sobbing and don’t stop for a good half hour. I’ve disappeared into myself like a snail pulling back into its protective shell. So that’s what post-traumatic stress looks like.
< My Thoughts > “…one moment kicking...”
Sonny is on medication designed to ease sudden extreme, hysterical emotional outbursts of laughter or crying, accompanying head-butting and kicking. According to the prescribing physician, children with autism often cry or act angry when they really are not. Who knew? The reverse is also true. They may happy when they are sad or upset and run around laughing. These sudden, involuntary outbursts are very scary for parents and child. Fortunately, Sonny has a med for that. Just so you know, my motto is 'no pills without skills'. We do have visual supports and teach him skills to ease pain.
3% This is me, Jeni: I’m a five-foot nuthin’, one hundred and …ahem pounds – a roly-poly, forty something, Rubenesque bon-bon of a gal often described as cute but never sexy.
I have two autistic children, an Australian shepherd named Sugar, and an albino frog named Humbert-Humbert. I’ve also got a husband, but he is sort of a bit player in the melodrama that is my life. The frog gets more screen time than he does.
6% I headed off to find out what was broken in the other room, hoping Jaxson didn’t need stitches.
“Mom, who is more irritating, me or Jaxson?” I stood over a broken Christmas bulb on the kitchen floor.
“You both have your moments,” I told Jake. “What do I do that’s as bad as his fits?”
“You ask a lot of questions. Questions, questions, questions. Questions are good, but sometimes when they’re coming as fast and furious as you ask them, it feels like getting hit with one of your brother’s little fists. Or a stun gun.”
“I guess I’m just bi-curious,” said Jake. I smiled. “Where did you hear that word?” “On TV somewhere,” Jake said as he picked up a few shards of red glass.
< My Thoughts > "Questions, questions, questions.”
My ‘educated’ guess about the constant question asking is as follows – Constant questions needing to be answered could be a bid for adult attention. Autistics showing signs of Obsessive-Compulsive Disorder (OCD) sometimes have thoughts that won’t go away. Then, it may be comforting saying repetitive words or sing-songy words, over and over. Or, continually checking on something may become their daily mantra or ritual. Perhaps questioning is a way of communicating and connecting with the adults in their world, by asking never-ending questions.
Ruzzano, L., Borsboom, D., et al. (2015) state that there are recent efforts to “unraveling the nature of relationship between autism and associated disorders.” “Our aim is to explore and understand psychological disorders as well as to identify which repetitive behaviors interact in autism and compare this to Obsessive-Compulsive Disorder (OCD).”
6% At last, I was finally able to sit in the rocking chair with Jaxson and make nice. Usually, when he realized he isn’t going to get his way, there is a hurricane of dysfunctional behavior followed by a self-imposed time out, then him hugging me and crying, eventually leading to, “Better, Ruby?” “Yes Max, all better,”
He calls me Ruby and I call him Max, something that started when I began mimicking the voice of the cartoon character on Max and Ruby, one of his favorite shows.
“Good job, Ruby.” Jaxson smiled and used his little fingers to push the downturned corners of my mouth up into a smile.
Autistic people often have a problem matching a facial expression with a corresponding emotion. Jake regularly had to consult the Chart of Expressions on his special needs classroom wall in order to know what someone he was talking to might be feeling inside.
Grossman, R., Tager-Flusberg, H. (2012) tell us that there is some correlation between the “degree of social impairment, and the ability to determine what dynamic facial expressions mean.” Their pilot study showed that participants found it most difficult to differentiate between “the properties of surprise and those of a happy expression.” Participants learned that teen with their mouths in an open position were in a state of high intensity of anger, sadness, and surprise. While teens with closed mouths were experiencing an emotion of lesser intensity.
< My Thoughts > “…dynamic facial expressions....”
Before anyone can 'learn' a new concept, one must have some idea to tie it to. You have to already have a place to put it in your mind. A schema, a frame of reference. For the child with autism, there probably isn't any frame of reference for 'facial expressions'. No place to put it. Nor, do they see the need for learning about facial expressions, because they have no natural 'social communication' interest.
7% My husband was having “issues” coming to terms with his children’s autism; especially at Christmastime. “Well, I’d take them out, but they don’t like doing anything.”
My response wasn’t exactly full of Christmas cheer. “Correction,” I said “they don’t like doing anything you like.” Jaxson loves playing on the swings. Jake wants to make things in the shed. You will never turn them into the little men you dreamed they’d be, so how about realizing they’re perfect little men just as they are?
< My Thoughts > “...just as they are?”
Parents may need process the fact that their child has autism. Some parents need to grieve the loss of their 'dream child' and accept the child with autism. That child is much more than their autism. It is up to parents to discover and promote who that child is, and the trajectory of their autism.
Yanofsky, J. (2012) says that he doesn’t like to teach his son things that come naturally to other children. That he knows he could be a better husband and father, but life is difficult with his 11 year-old son, and his tantrums drive him crazy.
7% Do you think I like spending hours of my life doing these repetitive, painfully boring things? No. But I do them because they like it. I do it for them, not for me. Some days I wonder just how harshly I’d be judged if I disappeared suddenly, changed my name, and never returned.
Christmas Eve went fairly smoothly after that. Mom and Bob arrived for dinner, presents were revealed, the questions stopped, and there were no more tantrums.
< My Thoughts > "...fairly smoothly..."
Imagine my shock, when taking Sonny into a meeting in a room he had never been in before, in front of people he had never seen before. We were there to discuss his aggressive, even dangerous behavior issues. Attila the Hun sat there like a sweet, peaceful little angel. He sat quietly in a big person's chair, with his feet dangling far from the floor. Like Jeni, I wanted say, “honestly, life is a nightmare, full of tantrums, all day every day!”
That is how autism behavior works against you. When you try to convince the doctor that your child needs something to take the ‘edge’ off. My son’s doctor actually said to me, as Sonny sat peacefully – “It doesn’t seem that he needs anything, but I would be glad to prescribe something for you, Mom.” Give me strength!
11% In elementary school, the counselors tried to solve Jake’s sensory overload by giving him a huge set of noise-reducing headphones. Yeah, that was nice. Now he not only didn’t fit in, but he had a monstrous set of yellow earphones to even further separate him from his peers. He looked like a big, sweaty bumblebee. Eventually they were replaced with orange ear plugs that he now wears in the gym, in the noisy hallways, and often in class. Add a mini bottle of antibacterial gel to his arsenal of protection, and all he needs is a pocket protector and a lisp and he’s right out of central casting for Nerds III. “I am the Walrus, goo goo ga joob.”
Gee, B., Thompson, K., et al. (2013) believe that when sensory processing is impaired it impacts a person’s daily routine. That when the environment is acoustically modified with music, delivered using specialized headphones and a CD player, it can help children with autism cope. Auditory hypersensitivity and abnormal responses to sounds that are neither threatening nor uncomfortable for most can cause behavioral disturbances in people with ASD. While the study states that headphones intervention of playing music may not work for all those trying to cope with sensory processing issues, it seems to work for many.
< My Thoughts > “…specialized headphones...”
As a parent and educator, I am continually aware of filtering 'interventions' through the process of what is ‘age appropriate’. And, I know that getting someone to accept an ‘earbud’ placed in their ear would require a careful learning-acceptance process, over time. Today, everywhere you will see students and adults with that white cord dangling from their ear as they listen to their tunes. So, the 'bumblebee' look would probably be a second choice. But, whatever works.
Note: For further information on ‘sensory integration’, go to MENU for Know Autism, Know Your Child with < My Thoughts > by Sara Luker. Read online here, under UNIT 4 – When Is It Sensory? CHAPTER 3 – Sensory Integration.
12% With Jaxson, it’s different. He’s blissfully unaware of even the concept of social ineptitude. He’s on a stage of his own and we’re all bit players, coming in now and again to offer clothing or food. At nine, he’s just beginning to speak in complete sentences and still wears a diaper.
For those with 'social ineptitude', Bellini, S., Benner, L., et al. (2009) describe Social Skills Training (SST) as ranking the 9th most effective strategy to be taught to people with ASD. It comes well behind “behavioral, language, academic and psychopharmacological interventions.” One of the reasons they state for a not to provide SST is that it is seldom taught across multiple settings. Another objection is that it takes students out of academic time for the 9-week period scheduled. This study does approve of the encouraged ‘self-monitoring’, ‘relaxation techniques’, and ‘emotional regulation’. But again, they mention the pitfalls of the length of the program resulting in a ‘plateau’ effect, although they admit that they’ve seen no ‘dramatic failures’ of this intervention.
12% His inability to communicate with others in a meaningful way makes forming relationships difficult. He’s unaffected by social mores or his lack of appropriate actions because they do not exist within the production in which he is starring. They don’t exist for him yet…
Casenhiser, D., Binns, A., et al. (2015) talk about a Social-Interaction-Based Therapy. This therapy, when successful, increases a child’s functional and appropriate communication. Increasingly it provides the amount of language input/intake and enables the participant to broaden learning opportunities in a group and/or peer setting. Students not only learn the ‘functionality’ of language but they gain the ability to ‘self-regulate’.
Students learn to interact more comfortably, such as asking, “How is your day going?” “Do you have homework tonight?” “Would you like to play a board game with me?” They also learn which questions are appropriate and which are not. For instance, not saying to someone, ”Didn’t you wear that same dress yesterday?” is not thoughtful question and may NOT result in ‘happy face’ emotion.
12% Last night before bed, Jake asked me this: “Mom, in Heaven will I be normal?” Ugh, how do I answer this? And what is the truth? Mommy’s truth isn’t something he’s apt to enjoy…
But bedtime is definitely not the time for pessimism. So what do I answer? “Honey, heaven is whatever each person wants it to be.” “Really?” he asks, rubbing his tired eyes. “Yep, I’m pretty sure.” “I love you, Mom.” “I love you too, buddy. Now go to sleep.” Click. Lights out.
13% From the moment he was born, Jake was never a good sleeper and I had to lie in the bed, my bed (yes, he still sleeps with me, what about it?), and wait for him to fall asleep before disengaging whatever body part of mine was underneath him, and perform a series of stealth movements until I extricated myself from the room to sweet, sweet freedom.
< My Thoughts > “…never a good sleeper.”
The literature suggests many things may be happening here. Sonny’s neurologist suggested hat our guy may be having epilepsy interruptions. We found that one of the new medications we had him on had 'sleeplessness' listed as a possible side-effect. Some parents have found success with ‘weighted blankets.’ Of course, every behaviorist will insist you try a consistent ‘bedtime routine’. Yes, we have that too, turn on music box which also shines pretty colored floaty things on the wall. We turn the lights out twice, cover him with Toy Story blanket; our nighttime ritual. Sometimes it works and sometimes Sonny is determined to pull an all-nighter.
13% Now he has questions. Every night, before he can even try to close his eyes, he asks the same five questions. Here are my responses:
“There are no legendary creatures. The door is double locked. There is a heaven and you’re going there someday. Yes, I’m sure. Yes, I’ll leave the light on in both bathrooms.” “I love you, Mom.” “I love you too, buddy. Now go to sleep.”
22% It was a dark and stormy day. A bad day. No, a really bad day. I wish I were engulfed in flames. Hail Mary, full of grace, is there a flamethrower in the vicinity? And then I heard it, amid the cacophony of screams inside my head and out. “Is there anything I can do to help?”
< My Thoughts > "...is there a flamethrower..."
“I wish I were engulfed in flames.” I can understand this cry for help. Because if one were truly on fire someone would rush to help, every time. But, when you’re dealing with two children with autism, help rarely comes. And yet, there are those special people and special moments.
22% That day, I met an angel at the Rite Aid drugstore. My child was in the middle of a full-on hysteria-inducing temper tantrum because I would not purchase him another camera to replace the one he’d put into the toilet and flushed the night before. The toilet was unscathed – the camera, however, hadn’t been so lucky.
I’d stopped at the drugstore to pick up a new prescription for Jaxson, the third in a series of medications to try and help prevent his aggressive behavior, particularly at school.
23% When I am in the store and my child suddenly rolls into tantrum mode, kicking and screaming and such, it’s not very helpful if a passerby says things like, “He needs is a good spanking,” or “You wouldn’t see my kid acting like that.” I want to say, “Go ahead and hit him, see if it works.” Or, “Bye, honey. This nice man is gonna take you home. Have fun!”
Okay, so I don’t actually do this. But I really, really want to.
24% But, this particular day, as I proceeded to make my way out of Rite Aid…Jaxson pummeled me from behind, sinking his teeth into my arm. My purchases fell from the plastic bag, trailing behind me like Hansel and Gretel’s breadcrumbs.
Then, the angel appeared. Without asking, without my silent pleading eyes meeting hers, she quietly followed me to the parking lot, picking up my prescriptions, hair spray, box of tampons and a bag of Hershey’s kisses, gathering them all up as I maneuvered to press Jaxson against the car with my body, fishing for my keys.
It took ten minutes to unlock the door and push my screaming child inside. I closed the door and stood there for a moment, taking a look at the nice bruise on my arm that was already forming, his little teeth imprints clearly in the center. She handed me the bag and smiled as Jaxson wailed inside the banging on the window, his voice only slightly muffled by the closed windows.
“He’s autistic,” was the only thing I could think of saying. “Yeah, I kind of guessed there was something going on there besides the regular old tantrum. Can you get home okay?” she asked. My eyes filled with tears. “Yes, thanks. You have no idea how nice it is to have someone not judging me right now.” “I think I can guess,” she smiled and then left for her car. That day, I met an angel at the Rite Aid drugstore.
Hoogsteen, L. & Woodgate, R. (2013) have a study that talks about improving the quality of life of families of children with autism living in rural areas. The study reaches parents who ‘live the experience’ and talks about, their thoughts, their feelings, their challenges, their opportunities, and their needs. They felt that their community members were unaware and uneducated about the challenges they faced when bringing their child with them when they shopped or visited in the community.
Such as when the negative characteristics of autism were displayed,– tantrums, yelling, disruptive behavior, meltdowns, screaming, physical violence towards themselves and others. Most people look at you and they just think he’s a bad kid, because he looks normal. What they think they see is bad parenting, a bad uncontrollable child, or just a rude disruption to their shopping experience.
Parents say that “…autism is invisible to the untrained eye, yet visible in ways that people deemed as undesirable.” Observers have no clue about the 'autism', because the child looks perfectly normal. He walks. He talks. He doesn’t have, you know, a stumble or a limp, so you can’t see a physical disability.
< My Thoughts > "...autism is invisible..."
The 'invisibility of autism'. When we lived in a rural area, the community knew who Sonny was, and they were mostly very accepting. I was teaching at the only school in town, so that helped. Still, people were startled, at the store, when our handsome, 'normal' looking Sonny would grab things out of their shopping cart. Or, when he would just happily wheel their whole cart away. We understood his reasoning. Why start over with an empty cart, when you could grab a shopping cart already full?
37% Jaxson is a little genius. I have no proof of this, but I think it might be true. He likes to have three televisions in the house on at all times, each with volumes raised to an ear-splitting decibel level. He doesn’t like being clothed. Every day he gets off the school van, hops inside, and takes of everything he is wearing, except his undies. Rain or shine, summer or winter – Jaxson doesn’t like being dressed.
< My Thoughts > "...three televisions..."
We too, are a ‘three television on at all times’ family. One with Blue’s Clues DVD’s, one with Toy Story DVD’s, and Elmo DVD’s on the third one, (sometimes switched with Thomas the Train or Sonny's favorite Reese Witherspoon or Meg Ryan comedies).
56% I hope my kids look back on their childhood and smile, just like I do when I think of my own childhood. I hope the bad mixes with the good becoming a wonderful stew of memories – I hope I teach them to make the right choices and when they don’t, the consequences aren’t too severe; I hope, and hope, and hope.
56% I am who I am because of how I was raised. For the shy kid who doesn’t have a voice having a bunch around you that are loud and diverse helps to fill in the empty gaps.
My kids have a lot of gaps. I hope I’m loud enough to fill them all.
End of excerpts from this book by Jeni Decker.
< My Thoughts > "End of excerpts..."
Jeni’s book is open, warm, funny, and a little X-rated. Please read it to get the full impact of her very special take on motherhood.
References:
Bellini, S., Benner, L., et al. (2009). A Systematic Approach to Teaching Social Skills to Children with Autism Spectrum Disorders: A Guide for Practitioners; Beyond Behavior; Vol.19 (n1):p. 26-39.
Casenhiser, D., Binns, A., et al. (2015). Measuring & Supporting Language Function for Children with Autism: Evidence from a Randomized Control Trial of a Social-Interaction-Based Therapy. Journal of Autism Developmental Disorders; 45:846-857.
Gee, B., Thompson, K., et al. (2013). Efficacy of a Sound-based Intervention with a Child with an Autism Spectrum Disorder and Auditory Sensory Over-responsivity. Occupational Therapy, International, V21:12-20.
Grossman, R., Tager-Flusberg, H. (2012). “Who Said That?” Matching of Low & High Intensity Emotional Prosody to Facial Expressions by Adolescents with ASD. Journal of Autism Developmental Disorders; 42:2546-2557.
Hoogsteen, L. & Woodgate, R. (2013). The Lived Experience of Parenting a Child With Autism in a Rural Area: Making the Invisible, Visible; Pediatric Nursing; Vol. 39:5.
Meyer, R., Root, A., et al. (2016) article called – Good Withholding & Bad Withholding. Asperger’s Syndrome Grows Up; Retrieved online from http://www.pathfindersforautism.org/articles/view/
asperger-syndrome-grows-up--recognizing-adults-in-todays-challenging-world.
Ruzzano, L., Borsboom, D., et al. (2015). Repetitive behaviors in autism & obsessive-compulsive disorder. Journal of Autism & Developmental Disorders; V45(1):192-202.
Sicile-Kira, C. (2014). Autism Spectrum Disorder (revised): The Complete Guide to Understanding Autism; New York, New York: Penguin Random House Company.
Yanofsky, J. (2012). Bad Animals: A Father’s Accidental Education in Autism; Arcade Publishing; New York, NY.