Hello Everyone,
This month’s BLOG will continue the opportunity to view my slideshow GALLERY of Books and focus on the offered Extended Book Reviews. The slideshow shows the book covers, divided into the following categories ~
AMAZING ADVENTURES
DIAGNOSIS, DOCTORS, DENIAL
SAVVY SOLUTIONS
SCHOOL ON THE SHORT BUS
Hopefully, these stories will help parents, clinicians, academics, and all people #Autism, in connecting with those who have gone before us on their Autism Journey. This April's 2025 BLOG will continue to give snippets of my Extended Book Reviews; find full Extended Book Reviews on the website MENU; along with a LINK to purchase the eBook. You will find each Autism story to be engaging, compelling, and as different as each family's Autism journey.
From the Category – DIAGNOSIS, DOCTORS, DENIAL. Read my full Extended Book Review, with < My Thoughts > by Sara Luker; plus, LINK to eBooks here on, www.sarasautismsite.com.
This month’s BLOG will continue the opportunity to view my slideshow GALLERY of Books and focus on the offered Extended Book Reviews. The slideshow shows the book covers, divided into the following categories ~
AMAZING ADVENTURES
DIAGNOSIS, DOCTORS, DENIAL
SAVVY SOLUTIONS
SCHOOL ON THE SHORT BUS
Hopefully, these stories will help parents, clinicians, academics, and all people #Autism, in connecting with those who have gone before us on their Autism Journey. This April's 2025 BLOG will continue to give snippets of my Extended Book Reviews; find full Extended Book Reviews on the website MENU; along with a LINK to purchase the eBook. You will find each Autism story to be engaging, compelling, and as different as each family's Autism journey.
From the Category – DIAGNOSIS, DOCTORS, DENIAL. Read my full Extended Book Review, with < My Thoughts > by Sara Luker; plus, LINK to eBooks here on, www.sarasautismsite.com.
I Wish I Were Engulfed in Flames: My Insane Life Raising Two Boys with Autism by Jeni Decker (2011). 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.
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.
< 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.
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.
6% I headed off to find out what was broken in the other room, hoping Jaxson didn’t need stitches.
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 have 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 > “…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. 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.
Reference:
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.
End of excerpts from this book by Jeni Decker.
< My Thoughts > "End of excerpts..."
Jeni’s book is open, warm, funny. Please read it to get the full impact of her very special take on motherhood.
Thank you for reading and sharing my BLOGs. Comments are welcomed, to be viewed and answered privately. My goal is to assist families, clinicians, educators, and all people ‘autism’, to continue their journey on the Autism Highway. At the end of each website Extended Book Review, please find a source to have the whole book to read.
Regards,
Sara Luker
Paid Link Disclosure -
These Extended Book Reviews have an Amazon Link for actual book purchases. Please read this Paid Link Disclosure AKA Affiliate Links Disclosure:
Sometimes there are paid links, also known as affiliate links, used on this site. My website, www.sarasautismsite.com, is a participant in the Amazon Services LLC Associates Program. This is an affiliate advertising program designed to provide a means for sites to earn fees by advertising and linking to Amazon.com.
I may earn or receive a small paid commission from referrals for book purchases made through posts, pages, and links on this site. But I try to remain unbiased and I do not accept paid reviews. All opinions expressed here are my own.
There is no extra cost to you when purchases are made using the provided links. By using the links I provide you agree that you’ve read this paid link disclosure statement.
Thank you!
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.
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.
< 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.
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.
6% I headed off to find out what was broken in the other room, hoping Jaxson didn’t need stitches.
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 have 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 > “…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. 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.
Reference:
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.
End of excerpts from this book by Jeni Decker.
< My Thoughts > "End of excerpts..."
Jeni’s book is open, warm, funny. Please read it to get the full impact of her very special take on motherhood.
Thank you for reading and sharing my BLOGs. Comments are welcomed, to be viewed and answered privately. My goal is to assist families, clinicians, educators, and all people ‘autism’, to continue their journey on the Autism Highway. At the end of each website Extended Book Review, please find a source to have the whole book to read.
Regards,
Sara Luker
Paid Link Disclosure -
These Extended Book Reviews have an Amazon Link for actual book purchases. Please read this Paid Link Disclosure AKA Affiliate Links Disclosure:
Sometimes there are paid links, also known as affiliate links, used on this site. My website, www.sarasautismsite.com, is a participant in the Amazon Services LLC Associates Program. This is an affiliate advertising program designed to provide a means for sites to earn fees by advertising and linking to Amazon.com.
I may earn or receive a small paid commission from referrals for book purchases made through posts, pages, and links on this site. But I try to remain unbiased and I do not accept paid reviews. All opinions expressed here are my own.
There is no extra cost to you when purchases are made using the provided links. By using the links I provide you agree that you’ve read this paid link disclosure statement.
Thank you!
Sara Luker
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