I Wish I Were Engulfed in Flames: My Insane Life Raising Two Boys with Autism
by Jeni Decker. eBook 2011; an Extended 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.
< 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. And, even a motivating reward to be used for behavior modification. Yeah!
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 > “That’s another issue, being touched. He doesn’t like it much.”
Sicile-Kira (2014) tells us that a typical characteristic of children with autism is “to become stiff when held, does not like to be touched.” She also tells us that when interviewing Temple Grandin, “From as far back as I can remember, I always hated to be hugged, but 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 (from Temple Grandin, Thinking in Pictures).” Another excerpt from Sicile-Kira tells us that “Some babies become stiff when you pick them up… usually this indicates that their tactile sense is out of whack.”
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.
< My Thoughts > “…Jake also can’t tell a lie.”
Meyer, 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.”
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 me in the stomach, the next moment patting me on the head.”
Sonny is on medication designed to ease sudden extreme and hysterical emotional outbursts of laughter or crying with 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 laugh when they are sad or upset.These sudden, involuntary ‘heebie jeebies’ are very scary for parents and child. Fortunately we’ve found a med for that. Smiles.
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.”
I’m going out on a limb here, but having been around verbal students with autism, my ‘educated’ guess about the constant question asking is as follows –
The possible constant need for questions to be answered can be a bid for adult attention, coupled with a bit of underlying Obsessive Compulsive Behavior (OCD). Autistics showing signs of OCD, like thoughts that won’t go away, saying repetitive words or sing-songy words, or continually checking on something become their daily mantra or ritual. Perhaps there is comfort in communicating and connect with the adults in their world, by asking never-ending questions.
To add to this thought, Ruzanno, 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 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.
< My Thoughts > “…matching a facial expression with a corresponding emotion.”
Grossman & Tager-Flusberg (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.
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 > “how about realizing they’re perfect little men just as they are?”
Yanofsky (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 > “Christmas Eve went fairly smoothly after that. … the questions stopped, and there were no more tantrums.”
My curiosity is always up when my child, with the reputation of Attila the Hun, acts like the peaceful little angel when around strangers or people he only sees rarely. He may even sit quietly in a chair. Knowing this, I wanted say to Jeni’s mom …“honestly, her life is a nightmare of questions and tantrums, all day every day!”
And then there is how this 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.” Ugh! 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.”
< My Thoughts > “…huge set of noise-reducing headphones.”
Gee, 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 playing music may not work for all those trying to cope with sensory processing issues, it seems to work for many. 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. But, everywhere you look today, you will see students and adults with that white cord dangling from their ear as they listen to their tunes. Smiles.
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.
< My Thoughts > “…social ineptitude.”
Bellini, 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…
< My Thoughts > “…inability to communicate with others…socially.”
Casenhiser, 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’.
In my experience, I have seen the results of their programs. 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 boardgame 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 adding melatonin to aid sleep and also said that 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 with floaty things, turn the lights out twice, cover with Toy Story blanket… and so it goes. Sometimes it works and sometimes Sonny is determined to pull an all-nighter! Smiles.
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 > “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 without a lot of begging.
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.
< My Thoughts > ‘The invisibility of autism…’
Hoogsteen & Woodgate (2013) find a study that talks about “…improving the quality of life of families of children with autism living in rural areas.” This study reaches parents who ‘live the experience’ and talks about “…their thoughts, their feelings, their challenges, their opportunities, and their needs.”
They say that “…autism was invisible to the untrained eye yet visible in ways that people deemed as undesirable.” “They have no clue because “C” looks perfectly normal. He walks.The talks. He doesn’t have, you know, a stumble or a limp, so you can’t see a physical disability.”
When we lived in a rural area, the community knew who Sonny was and they were very accepting. I was teaching at the only school, so that helped. Still, people were startled when Sonny would grab things out of their shopping cart, or when he would just wheel the whole cart away.
By that time Sonny’s behavior was helped by various meds. Before we found the right epilepsy meds, however, he did have several scary, very scary episodes, culminating in equally scary frantic rides over the narrow mountain pass to the city hospital. Thanks to the volunteer Fire Department, we never had to call ‘Flight for Life’.
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.
< My Thoughts > “…You have no idea how nice it is to have someone not judging me right now.”
Again, the parents in Hoogsteen & Woodgate (2013) 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 shared how difficult it is to feel that they are on their own… that most people are so judgmental and frustrating. One parent says “You get home, and you’re just destroyed because it replays in your mind. How do I make them understand?”
35% Like Martin Luther King – I had a dream, and it didn’t include raising two autistic kids on my own in a loveless marriage. But since I’d been pretty much doing that since they were born anyway, what was I holding on to? The scent of normalcy? No, I think not. A whiff of desperation was more like it.
37% The whole autism thing snuck up on me like the swine flu – the symptoms fairly banal until it felt like I was hooked up to life support and a priest was administering last rites… after that, nothing else mattered. Will and I were raising a family, too busy making it from day to day unscathed to worry about such trifles as being in love. I came to the conclusion that there is no shame in playing the hand you are dealt. Don’t cry for me, Argentina. That’ll just piss me off.
< My Thoughts > “…playing the hand you are dealt.”
Acceptance and commitment are key to playing the hand you are dealt. Recently, programs have become available to help parents learn the skills to help them become proactive and take the action needed to feel empowered to deal with autism.
For example, there is a website – www.actmindfully.com.au which seemed to start by giving the following messages:
“Teaching psychological skills to handle painful thoughts and feelings effectively, in such a way that they have much less impact and influence – these are known a mindfulness skills.”
“Helping to clarify what’s truly important and meaningful – that is to clarify our values… and use that knowledge to guide, inspire and motivate to set goals and to take action that enriches our lives.” Retrieved on 3/21/2017.
37% Jaxson is a little genius. I have no proof of this, but I think it might be true. He’s a little guy for eight, and he pack a mean wallop when he wants to, but he is learning that tantrums won’t get him what he wants. I’ve hauled him out of enough stores kicking and screaming…for him to know that. He’s finally getting it.
< My Thoughts > “…tantrums don’t get him what he wants”
Tantrums in our house means lashing out at whatever is in reach with… hair pulling, biting, scratching, head butting, slapping the TV screen, kicking and throwing things. Just saying!
Reducing or extinguishing tantrums is easier said than done. Not every mom can accomplish this on her own the way Jeni did. Santiago, et al. (2016) describe just how difficult it is to prevent episodes of severe problem behavior. A study they liked talked about the most successful changes are those delivered in the very setting that is triggering or causing the outburst. The authors say that most outbursts come from denying the child a ‘desired tangible, an escape, or the negative attention’ they seem to need.
The study showed that a ‘tolerance for being denied’ can be learned. To establish this, ‘tolerance’ participants learned more appropriate responses, such as: “Excuse me” “Can I have that, please?” “May I have my way, please?” Throughout this intervention these phrases were “taught to tolerate denials and delays to requested reinforcers.” For children who were non-verbal or had limited language, they were given the phrases on their communication devices.
The article goes on to say that shaping the behavior of participants was done over increasing periods of time, and eventually in natural settings. Children were also cued and coached to take a deep breath and respond with ‘okay’ when they felt calm enough to continue the therapy. Eventually, simple compliance by allowing them “to have their attention diverted to work, play, or conversation.” For example, Zeke a boy with very challenging self-injurious behavior, learned to accept the response… “Not right now Zeke.”
37% 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 > (Jaxson) He likes to have three televisions in the house on at all times
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 Reese Witherspoon or Meg Ryan comedies).
37% He attends a regular elementary school and even participates in a general education first grade classroom when he is not in his learning disabled class with his other special compadres.
Jaxson can make his own popcorn in the microwave, toast his own waffles, cook his own chicken nuggets, and apply a liberal amount of catsup to the plate for dipping. He also has an affinity for baths, of which he takes at least two baths a day; filming his watery antics for posterity. Filmmaking is his newest obsession and no less than fourteen digital video cameras have paid for it with their lives … filming down the toilet or under the running tap. He doesn’t understand that what he films is not interesting or particularly appropriate.
< My Thoughts > “…Filmmaking is his newest obsession.”
“Obsessions and special interests can range from the quirky to the marvelous, but obsessions can genuinely interfere with the quality of life. Knowing which is which and what to do about it can be one of the balancing acts of parenting a child on the spectrum.” “Linking old interests to new ones can sometimes be the beginning of opening up your son’s or daughter’s horizons – not to stop them from enjoying the interests of their choice, but to show them how many choices they might really have.” Retrieved from www.ambitiousaboutabutsm.org.uk on 3/23/17.
From the Autism Files: Obsessions and special interests… ‘a water obsession’. Our Michael’s obsessions with toilets we assumed came naturally, because dad is a plumber. But it was more… “wherever we went Michael would go straight to the toilet to see what it looked like. He wouldn’t use it, he just wanted to have a good look at the workings… to investigate.” He had that obsession for an entire year… everyday investigating toilets and turning on the taps.” When we were somewhere and a toilet wasn’t available, he would tantrum. Finally, we made him a book full of pictures of toilets to take everywhere with him. We called it Michael’s Toilet Book. Retrieved from https.//gabriellebryden.wordpress.com/2009/11/08/obsessions-special-interests-the-autism-files/ on 3/23/17.
39% His speech was improving. He began to pick up little phrases here and there and often parroted them back at appropriate times, telling me his brain was starting to make some meaningful connections.
< My Thoughts > “…his brain was starting to make some meaningful connections.”
“What we see or hear, shape our brain connections during certain windows of development.” It is not clear how autism arises or how the brain is different. It is known that the brain is an intricate web of connections regulated by the quality and quantity of synapses, or points of contact between nerve cells and the building blocks of brain circuits.
“Autism may involve ‘a disconnect’ between the brain and its external environment – an inability of the brain to change properly based on input from the outside world.” Or, “the neurons are degenerating or dying in large numbers or that they’re not communicating properly.” Retrieved from Childrenshospital.org; Boston, MA. On 3/24/17.
40% Somewhere he picked up the little nugget, “Boo-ya!” Okay, so “Boo-ya” works if, say, he’s managed to putt the plastic ball into the mouth of his alligator golf game. But “Boo-ya” is decidedly less amusing when he says it after kicking me in the shin.
42% At the beginning of the new school year, as we passed through the computer room for orientation, Jake had approached the computer teacher, looked straight at his and asked – “Hey, how do you make your moustache do that?”
Jake wasn’t interested in checking out the computers, he only wanted to find out about the cool facial hair. To his credit, the teacher spent a few minutes explaining the ins and outs of moustache wax.
< My Thoughts > “Hey, how do you make your moustache do that?” Jake wasn’t interested in checking out the computers, he only wanted to find out about the cool facial hair.
This reminds me of a foster child we had who was much like Jake. While standing in line to check out at Walmart, he saw a man in a muscle shirt with full body tattoos including full sleeves. Our boy crept up close to the man and exclaimed into his face… “Do those pictures wash off?” The man just scowled at him and grunted.
Another time, there was a lovely lady dressed in beautiful sari and with a diamond protruding out from the side of her nose. Our boy twisted to an angle that allowed him to look up her nose… “How do you keep that in there?” he queried. Looking at me, shrugging her shoulders, she wisely acted as if she didn’t understand what he was saying.
Then there was the time that Sonny threw a tantrum on an escalator… sending people scrambling in every direction. Smiles.
42% The gym teacher had also made an impression, shooting baskets with Jake when he noticed him feeling isolated and insecure within his peer group. “You’re pretty good at this, Jake,” coach had told him after spending fifteen minutes shooting hoops with him, one on one.
His teacher told me Jake beamed with delight and felt special for the rest of the day. This is something new for him – these adult male advocates taking time around others to encourage something he’s interested in. My life definitely fits into the “it takes a village to raise a child” category.
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…hope, and hope, and hope.
< My Thoughts > “…I hope my kids look back on their childhood and smile.”
Lyons & Fitzgerald (2003) found that “Recently a number of individuals with autism possess a very early (1 year of age) autobiographical memory.” Previously, it was thought that because of generally an impaired recall for personally experienced events, individuals with autism had no very early childhood memories. Now professionals “speculate that people with highly developed neurological processes” allow them to have an extremely well developed memory. Also they say that “savant skills are strongly associated with exceptional memory and strong pervasive processing with allows for establishment of outstanding early memories."
“When I was one and a half years old, I was on a ferry lying on red seats.” Zamoscik, et al. (2016) found that persons high on the spectrum not only answered questions about knowledge of early childhood events, but also had knowledge of their age at the time of having that experience. They state that before these, online self-reports, people on the spectrum were thought to have little or no ‘autobiographical memory’. These authors feel that these memories are important to both language acquisition and understanding the cognitive self. “…autobiographical memories shape the self, and the self-concept, together with associated personal goals, shape the types of memories likely to be recalled.”
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 Jeni’s book – >
< My Thoughts >
Jeni’s book is open, warm and funny…and a little x-rated. Please read it to get the full impact of her very special take on motherhood. Let me just say – “Boo-ya Jeni!”
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References used in < My Thoughts > are:
Bellini, S., Benner, L., Peters-Myszak, J. (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., McGill, F., Morderer, O., Shanker, S. (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., St. John, K. (2013). Efficacy of a Sound-based Interrvention with a Child with an Autism Spectrum Disorder and Auditory Sensory Over-responsivity. Occupational Therapy, Int. 21:12-20.
Gil-Negiga, et al. (2002). Transient Topographical Disorentation; European Neurology, Vol 48:p191-199.
Green, L. (2013). The Well-Being of Siblings of Individuals with Autism; ISRN Neurology; Vol 2013; Art. 417194.
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.
Lyons, V., Fitzgerald, M. (2003). Letter to the Editor: Early Memory & Autism; Journal of Autism & Developmental Disorders; Vol. 33:3.
Meyer, R., Root, A., Newland, L. (2016) article called – Good Withholding & Bad Withholding. Asperger’s Syndrome Grows Up; Retrieved from: http://www.pathfindersforautism.org/articles/view/asperger-syndrome-grows-up--recognizing-adults-in-todays-challenging-world ; on 2/28/2017.
Rieske, R., Matson, J., May, A., Kozlowski, A. (2012). Anxiety in Children with High-Functioning Autism Spectrum Disorders: Significant Differences and the Moderating Effects of Social Impairments; Journal of Developmental & Physical Disabilities; Vol. 24:2, p167-180.
Sicile-Kira, C. (2014). Autism Spectrum Disorder (revised): The Complete Guide to Understanding Autism; New York, New York: Penguin Random House Company.
Tozer, R., Atkin, K., Wenham, A. (2013). Continuity, Commitment, & Context: Family of People with Autism & Learning Disability; Health & Care in the Community, Vol. 21:5, p4800-488.
Yanofsky, J. (2012). Bad Animals: A Father’s Accidental Education in Autism; Arcade Publishing; New York, NY.
Zamoscik, V., Mier, D., Schmidt, S., Kirsch, P. (2016). Early Memories of Individuals on the Autism Spectrum Assessed Using Online Self-Reports; Frontiers in Psychiatry, Vol. 7:79.
by Jeni Decker. eBook 2011; an Extended 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.
< 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. And, even a motivating reward to be used for behavior modification. Yeah!
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 > “That’s another issue, being touched. He doesn’t like it much.”
Sicile-Kira (2014) tells us that a typical characteristic of children with autism is “to become stiff when held, does not like to be touched.” She also tells us that when interviewing Temple Grandin, “From as far back as I can remember, I always hated to be hugged, but 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 (from Temple Grandin, Thinking in Pictures).” Another excerpt from Sicile-Kira tells us that “Some babies become stiff when you pick them up… usually this indicates that their tactile sense is out of whack.”
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.
< My Thoughts > “…Jake also can’t tell a lie.”
Meyer, 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.”
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 me in the stomach, the next moment patting me on the head.”
Sonny is on medication designed to ease sudden extreme and hysterical emotional outbursts of laughter or crying with 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 laugh when they are sad or upset.These sudden, involuntary ‘heebie jeebies’ are very scary for parents and child. Fortunately we’ve found a med for that. Smiles.
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.”
I’m going out on a limb here, but having been around verbal students with autism, my ‘educated’ guess about the constant question asking is as follows –
The possible constant need for questions to be answered can be a bid for adult attention, coupled with a bit of underlying Obsessive Compulsive Behavior (OCD). Autistics showing signs of OCD, like thoughts that won’t go away, saying repetitive words or sing-songy words, or continually checking on something become their daily mantra or ritual. Perhaps there is comfort in communicating and connect with the adults in their world, by asking never-ending questions.
To add to this thought, Ruzanno, 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 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.
< My Thoughts > “…matching a facial expression with a corresponding emotion.”
Grossman & Tager-Flusberg (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.
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 > “how about realizing they’re perfect little men just as they are?”
Yanofsky (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 > “Christmas Eve went fairly smoothly after that. … the questions stopped, and there were no more tantrums.”
My curiosity is always up when my child, with the reputation of Attila the Hun, acts like the peaceful little angel when around strangers or people he only sees rarely. He may even sit quietly in a chair. Knowing this, I wanted say to Jeni’s mom …“honestly, her life is a nightmare of questions and tantrums, all day every day!”
And then there is how this 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.” Ugh! 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.”
< My Thoughts > “…huge set of noise-reducing headphones.”
Gee, 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 playing music may not work for all those trying to cope with sensory processing issues, it seems to work for many. 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. But, everywhere you look today, you will see students and adults with that white cord dangling from their ear as they listen to their tunes. Smiles.
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.
< My Thoughts > “…social ineptitude.”
Bellini, 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…
< My Thoughts > “…inability to communicate with others…socially.”
Casenhiser, 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’.
In my experience, I have seen the results of their programs. 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 boardgame 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 adding melatonin to aid sleep and also said that 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 with floaty things, turn the lights out twice, cover with Toy Story blanket… and so it goes. Sometimes it works and sometimes Sonny is determined to pull an all-nighter! Smiles.
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 > “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 without a lot of begging.
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.
< My Thoughts > ‘The invisibility of autism…’
Hoogsteen & Woodgate (2013) find a study that talks about “…improving the quality of life of families of children with autism living in rural areas.” This study reaches parents who ‘live the experience’ and talks about “…their thoughts, their feelings, their challenges, their opportunities, and their needs.”
They say that “…autism was invisible to the untrained eye yet visible in ways that people deemed as undesirable.” “They have no clue because “C” looks perfectly normal. He walks.The talks. He doesn’t have, you know, a stumble or a limp, so you can’t see a physical disability.”
When we lived in a rural area, the community knew who Sonny was and they were very accepting. I was teaching at the only school, so that helped. Still, people were startled when Sonny would grab things out of their shopping cart, or when he would just wheel the whole cart away.
By that time Sonny’s behavior was helped by various meds. Before we found the right epilepsy meds, however, he did have several scary, very scary episodes, culminating in equally scary frantic rides over the narrow mountain pass to the city hospital. Thanks to the volunteer Fire Department, we never had to call ‘Flight for Life’.
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.
< My Thoughts > “…You have no idea how nice it is to have someone not judging me right now.”
Again, the parents in Hoogsteen & Woodgate (2013) 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 shared how difficult it is to feel that they are on their own… that most people are so judgmental and frustrating. One parent says “You get home, and you’re just destroyed because it replays in your mind. How do I make them understand?”
35% Like Martin Luther King – I had a dream, and it didn’t include raising two autistic kids on my own in a loveless marriage. But since I’d been pretty much doing that since they were born anyway, what was I holding on to? The scent of normalcy? No, I think not. A whiff of desperation was more like it.
37% The whole autism thing snuck up on me like the swine flu – the symptoms fairly banal until it felt like I was hooked up to life support and a priest was administering last rites… after that, nothing else mattered. Will and I were raising a family, too busy making it from day to day unscathed to worry about such trifles as being in love. I came to the conclusion that there is no shame in playing the hand you are dealt. Don’t cry for me, Argentina. That’ll just piss me off.
< My Thoughts > “…playing the hand you are dealt.”
Acceptance and commitment are key to playing the hand you are dealt. Recently, programs have become available to help parents learn the skills to help them become proactive and take the action needed to feel empowered to deal with autism.
For example, there is a website – www.actmindfully.com.au which seemed to start by giving the following messages:
“Teaching psychological skills to handle painful thoughts and feelings effectively, in such a way that they have much less impact and influence – these are known a mindfulness skills.”
“Helping to clarify what’s truly important and meaningful – that is to clarify our values… and use that knowledge to guide, inspire and motivate to set goals and to take action that enriches our lives.” Retrieved on 3/21/2017.
37% Jaxson is a little genius. I have no proof of this, but I think it might be true. He’s a little guy for eight, and he pack a mean wallop when he wants to, but he is learning that tantrums won’t get him what he wants. I’ve hauled him out of enough stores kicking and screaming…for him to know that. He’s finally getting it.
< My Thoughts > “…tantrums don’t get him what he wants”
Tantrums in our house means lashing out at whatever is in reach with… hair pulling, biting, scratching, head butting, slapping the TV screen, kicking and throwing things. Just saying!
Reducing or extinguishing tantrums is easier said than done. Not every mom can accomplish this on her own the way Jeni did. Santiago, et al. (2016) describe just how difficult it is to prevent episodes of severe problem behavior. A study they liked talked about the most successful changes are those delivered in the very setting that is triggering or causing the outburst. The authors say that most outbursts come from denying the child a ‘desired tangible, an escape, or the negative attention’ they seem to need.
The study showed that a ‘tolerance for being denied’ can be learned. To establish this, ‘tolerance’ participants learned more appropriate responses, such as: “Excuse me” “Can I have that, please?” “May I have my way, please?” Throughout this intervention these phrases were “taught to tolerate denials and delays to requested reinforcers.” For children who were non-verbal or had limited language, they were given the phrases on their communication devices.
The article goes on to say that shaping the behavior of participants was done over increasing periods of time, and eventually in natural settings. Children were also cued and coached to take a deep breath and respond with ‘okay’ when they felt calm enough to continue the therapy. Eventually, simple compliance by allowing them “to have their attention diverted to work, play, or conversation.” For example, Zeke a boy with very challenging self-injurious behavior, learned to accept the response… “Not right now Zeke.”
37% 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 > (Jaxson) He likes to have three televisions in the house on at all times
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 Reese Witherspoon or Meg Ryan comedies).
37% He attends a regular elementary school and even participates in a general education first grade classroom when he is not in his learning disabled class with his other special compadres.
Jaxson can make his own popcorn in the microwave, toast his own waffles, cook his own chicken nuggets, and apply a liberal amount of catsup to the plate for dipping. He also has an affinity for baths, of which he takes at least two baths a day; filming his watery antics for posterity. Filmmaking is his newest obsession and no less than fourteen digital video cameras have paid for it with their lives … filming down the toilet or under the running tap. He doesn’t understand that what he films is not interesting or particularly appropriate.
< My Thoughts > “…Filmmaking is his newest obsession.”
“Obsessions and special interests can range from the quirky to the marvelous, but obsessions can genuinely interfere with the quality of life. Knowing which is which and what to do about it can be one of the balancing acts of parenting a child on the spectrum.” “Linking old interests to new ones can sometimes be the beginning of opening up your son’s or daughter’s horizons – not to stop them from enjoying the interests of their choice, but to show them how many choices they might really have.” Retrieved from www.ambitiousaboutabutsm.org.uk on 3/23/17.
From the Autism Files: Obsessions and special interests… ‘a water obsession’. Our Michael’s obsessions with toilets we assumed came naturally, because dad is a plumber. But it was more… “wherever we went Michael would go straight to the toilet to see what it looked like. He wouldn’t use it, he just wanted to have a good look at the workings… to investigate.” He had that obsession for an entire year… everyday investigating toilets and turning on the taps.” When we were somewhere and a toilet wasn’t available, he would tantrum. Finally, we made him a book full of pictures of toilets to take everywhere with him. We called it Michael’s Toilet Book. Retrieved from https.//gabriellebryden.wordpress.com/2009/11/08/obsessions-special-interests-the-autism-files/ on 3/23/17.
39% His speech was improving. He began to pick up little phrases here and there and often parroted them back at appropriate times, telling me his brain was starting to make some meaningful connections.
< My Thoughts > “…his brain was starting to make some meaningful connections.”
“What we see or hear, shape our brain connections during certain windows of development.” It is not clear how autism arises or how the brain is different. It is known that the brain is an intricate web of connections regulated by the quality and quantity of synapses, or points of contact between nerve cells and the building blocks of brain circuits.
“Autism may involve ‘a disconnect’ between the brain and its external environment – an inability of the brain to change properly based on input from the outside world.” Or, “the neurons are degenerating or dying in large numbers or that they’re not communicating properly.” Retrieved from Childrenshospital.org; Boston, MA. On 3/24/17.
40% Somewhere he picked up the little nugget, “Boo-ya!” Okay, so “Boo-ya” works if, say, he’s managed to putt the plastic ball into the mouth of his alligator golf game. But “Boo-ya” is decidedly less amusing when he says it after kicking me in the shin.
42% At the beginning of the new school year, as we passed through the computer room for orientation, Jake had approached the computer teacher, looked straight at his and asked – “Hey, how do you make your moustache do that?”
Jake wasn’t interested in checking out the computers, he only wanted to find out about the cool facial hair. To his credit, the teacher spent a few minutes explaining the ins and outs of moustache wax.
< My Thoughts > “Hey, how do you make your moustache do that?” Jake wasn’t interested in checking out the computers, he only wanted to find out about the cool facial hair.
This reminds me of a foster child we had who was much like Jake. While standing in line to check out at Walmart, he saw a man in a muscle shirt with full body tattoos including full sleeves. Our boy crept up close to the man and exclaimed into his face… “Do those pictures wash off?” The man just scowled at him and grunted.
Another time, there was a lovely lady dressed in beautiful sari and with a diamond protruding out from the side of her nose. Our boy twisted to an angle that allowed him to look up her nose… “How do you keep that in there?” he queried. Looking at me, shrugging her shoulders, she wisely acted as if she didn’t understand what he was saying.
Then there was the time that Sonny threw a tantrum on an escalator… sending people scrambling in every direction. Smiles.
42% The gym teacher had also made an impression, shooting baskets with Jake when he noticed him feeling isolated and insecure within his peer group. “You’re pretty good at this, Jake,” coach had told him after spending fifteen minutes shooting hoops with him, one on one.
His teacher told me Jake beamed with delight and felt special for the rest of the day. This is something new for him – these adult male advocates taking time around others to encourage something he’s interested in. My life definitely fits into the “it takes a village to raise a child” category.
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…hope, and hope, and hope.
< My Thoughts > “…I hope my kids look back on their childhood and smile.”
Lyons & Fitzgerald (2003) found that “Recently a number of individuals with autism possess a very early (1 year of age) autobiographical memory.” Previously, it was thought that because of generally an impaired recall for personally experienced events, individuals with autism had no very early childhood memories. Now professionals “speculate that people with highly developed neurological processes” allow them to have an extremely well developed memory. Also they say that “savant skills are strongly associated with exceptional memory and strong pervasive processing with allows for establishment of outstanding early memories."
“When I was one and a half years old, I was on a ferry lying on red seats.” Zamoscik, et al. (2016) found that persons high on the spectrum not only answered questions about knowledge of early childhood events, but also had knowledge of their age at the time of having that experience. They state that before these, online self-reports, people on the spectrum were thought to have little or no ‘autobiographical memory’. These authors feel that these memories are important to both language acquisition and understanding the cognitive self. “…autobiographical memories shape the self, and the self-concept, together with associated personal goals, shape the types of memories likely to be recalled.”
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 Jeni’s book – >
< My Thoughts >
Jeni’s book is open, warm and funny…and a little x-rated. Please read it to get the full impact of her very special take on motherhood. Let me just say – “Boo-ya Jeni!”
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References used in < My Thoughts > are:
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Gee, B., Thompson, K., St. John, K. (2013). Efficacy of a Sound-based Interrvention with a Child with an Autism Spectrum Disorder and Auditory Sensory Over-responsivity. Occupational Therapy, Int. 21:12-20.
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Meyer, R., Root, A., Newland, L. (2016) article called – Good Withholding & Bad Withholding. Asperger’s Syndrome Grows Up; Retrieved from: http://www.pathfindersforautism.org/articles/view/asperger-syndrome-grows-up--recognizing-adults-in-todays-challenging-world ; on 2/28/2017.
Rieske, R., Matson, J., May, A., Kozlowski, A. (2012). Anxiety in Children with High-Functioning Autism Spectrum Disorders: Significant Differences and the Moderating Effects of Social Impairments; Journal of Developmental & Physical Disabilities; Vol. 24:2, p167-180.
Sicile-Kira, C. (2014). Autism Spectrum Disorder (revised): The Complete Guide to Understanding Autism; New York, New York: Penguin Random House Company.
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Yanofsky, J. (2012). Bad Animals: A Father’s Accidental Education in Autism; Arcade Publishing; New York, NY.
Zamoscik, V., Mier, D., Schmidt, S., Kirsch, P. (2016). Early Memories of Individuals on the Autism Spectrum Assessed Using Online Self-Reports; Frontiers in Psychiatry, Vol. 7:79.
