​
A Real Boy: How Autism Shattered our Lives & Made a Family from the Pieces by Christopher Stevens & Nicola Stevens, e-Book 2011 Edition; Extended Review with < My Thoughts > by Sara Luker
 
Excerpts from the book by Christopher Stevens & Nicola Stevens – 
 
7%       The question everyone asks is, ‘When did you first know?’ We usually say that we knew something was badly wrong before David was two years old.

8%       When David wasn’t howling, he was adorable. The first time we dared face the idea that there might be something wrong with him – something trivial, something easily righted – he was sixteen months old.

The whole street was painfully aware that David had suffered a series of ear infections. The screams that signaled physical pain were even more piercing, even more relentless, than his usual howls of protest at the injustice of existence.

Every ear infection had been chased away with antibiotics, but they always seemed to come back worse than before. It was plausible that David’s hearing was clogged, our GP agreed. He might have a condition called ‘glue ear’, where the eardrum was blocked with mucus.

That could make him indifferent to sounds and slow to talk. That appeared to explain all our baby’s problems.  And glue ear was simple to fix: tiny plug-busters, or grommets, would be inserted into the bungs to clear them, the aural equivalent of Draino.

9%       His unusually active mind was diverted by unusual entertainments. Bristol Zoo is a second home to hundreds of families with toddlers. The walls are high, the gates are guarded, scooters and bicycles are banned and there are no cars.

And no dogs – it’s the only park in the city where a two-year-old can hop, crawl, stagger, slide and roll across the grass without getting smeared in something unpleasant.

​It’s also the only park with lions and crocodiles, of course, but moderate parental vigilance ought to be enough to ensure no one gets eaten. Parental vigilance failed, one day just before Christmas.

10%     I called David’s name, once or twice, half-heartedly. I was too scared to care whether strangers thought I was a bad father for losing my child, but I knew there was no point in shouting. He had never come at our call. Never, not once.
 
David probably hadn’t even noticed my absence. He’d be doing the usual David things. It had to be the Insect House. And it was. He was tucked into a corner, where he wouldn’t be trampled, lying on his back and gazing at the mirror ball.
 
I tried to hug him, but he ducked away. He wouldn’t leave the Insect House, until a break came in the ambient music. I was holding the hood of his anorak – he wouldn’t take my hand – as I guided him towards the exit and thinking that his glue ear couldn’t be too bad if he could hear that music… he lunged forward and disappeared up a woman’s skirt.
 
‘Sorry!’ I said. “Sorry, he thinks you’re his mum.’ I had no idea if this was true…
 
‘Stop it! Stop it!” she said, jerking her leg, shouting at the squirming form. She slid a hand down her waistband to dislodge him, but it was obvious David had taken firm hold of something. I could only hope it was a thigh.
 
I didn’t know if I should reach inside her skirt. It might seem too forward: I’m not sure about the etiquette in that situation.
 
David was beaming when he emerged. Since no apology of explanation would be enough, I simply dragged him away, while his victim gaped after us.
 
“How was the zoo?” Nicky asked later.
‘David had fun,’ I said.
 
14%     Some other ‘less cute’ behaviors were there too – the rug-chewing tantrums, the incessant way he crashed his head against the slats of his cot.
 
Nicky (on the computer) showed me the page, and I was scathing. Nicky went back to the Net, searching for stronger evidence, and found the Diagnostic and Statistical Manual of Mental Disorders, DSM IV section on Autism.
 
David would have to match at least six of them, from a list of twelve. It didn’t look good. David had achieved top marks on the Diagnostic Criteria for Autistic Disorder.
 
< My Thoughts >       “DSM IV list of twelve…”
 
Catherine Lord, PhD. (2018), Director of the Child Mind Institute and member of the APA’s DSM-V work group explains that with the DSM IV criteria taken ‘literally’, anybody in the world could qualify for Asperger’s or PDD-NOS. That the goal of the revision was “to ensure that autism was not used as a ‘fallback diagnosis’ for children whose primary trait might be intellectual disability or aggression.”
 
But, Harslad, et al. (2014) caution that with the new model, DSM V, those previously diagnosed according to the DSM-IV may no longer meet the qualification for services. Clinicians have concerns that the new DSM-V will disproportionately exclude those with certain cognitive abilities, those of certain ages, and those with certain levels of functioning.
 
Because the ‘checklist’ has changed to a “2-Group” model, Mandy (2016) fears that those who most need ‘state’ services won’t get them. He feels that the real issue is ‘threshold’, the ‘level’ of symptoms to which everyone can agree. His concern is that ‘borderline’ people and those assessed at lower ‘levels’ of measure will be left out. 
 
Mandy states that he is hopeful, however, that the DSM-V will now provide a new and improved picture of ‘females’, previously missed by professionals. That meeting this new diagnosis criteria will result in reducing the ‘gender-based inequities’ the DSM-IV couldn’t.

​And, increase better awareness of how females seem to cope with social situations differently than males. He fears that females, while able to ‘forge’ an ‘identity’ which allows them to ‘pretend to be normal’, they are subsequently putting themselves at risk for damaging behavior.
 
Note: If your child has received a ‘new’ DSM-V diagnosis, which supersedes the DSM-V diagnosis, then you may be required by school districts, developmental programs, or others, to provide a letter stating the current diagnosis. When you are asked to provide this documentation, clarify exactly what they expect to see. Get that request in writing, if you can. Just saying…
 
14%     I made a last attempt to laugh it all off, by underlining fragments of the criteria which could apply to me. ‘I’ve got dodgy social skills,’ I said.
 
‘I like to be solitary. I’ve got a million rituals. He’s not autistic; he’ll just grow up to be a journalist.’ ‘Stop trying to make a joke of it,’ she told me. ‘We need to talk to a doctor.’

CLICK on READ MORE for the rest of the story... Smiles!
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Autism Belongs, Book 3 in the School Daze Book Series, by Sharon Mitchell; eBook 2015 Edition with < My Thoughts > by Sara Luker  (Note: This is based on fictional characters.)

(13% indicates location in the Kindle version of the book, instead of page numbers.)

Excerpts from the book ~

9%       “Let’s go for a walk.” Tomas knew that his wife had been cooped up in the apartment for far too long. When Manny was younger, she used to take him out often, but as he’d grown bigger and stronger and more unpredictable, it was no longer safe for her to go out alone with him.

Tomas and Maria strolled along, careful where they placed their feet. From past experience they knew that the sound of crunching leaves sent their son off the deep end. They did not need to tell Manny; his footsteps automatically missed the fallen leaves, even when he seemed to be peering upward toward the sun’s rays.

They walked the same route every time – had to. Any deviation bothered Manny so badly. When he was younger, he’d throw himself to the sidewalk, flailing and wailing if they tried taking a different street. Tomas would simply hoist the screaming child over his shoulder and they’d head home. Now that Manny had some size on him, this was harder to do. Plus, strangers looked at a tantrumming two year old in one way, but a half grown child doing the same thing was an entirely different matter.

10%     Immediately, Manny’s arms came up at his sides, his hands elevated and that keening noise started in the back on his throat. His parents knew what this meant. Manny might not speak, but he communicated, for sure. At least, sometimes.

< My Thoughts >       “Communication…school age”

Franco, Davis & Davis (2013) believe that because children with autism don’t develop early ‘intentional’ communication skills, they will develop flapping and challenging behaviors such as hitting, as they grow older. They say that the older child needs to be taught three important communication behaviors: vocalization, eye gaze, and gestures. They are considered the basic components of prelinguistic requesting and commenting acts. That older children who may never develop complex spoken language can still increase a beneficial, clear consistent means of communication. Studies show that there are positive outcomes for communication treatment planning with older children.

10%     “All right, son. I understand. Papa made a mistake is all. We’ll go straight.” He pointed down the way they had originally been heading. Manny’s noises stopped and he walked ahead of his parents on what he knew was the correct path. Tomas grabbed Maria’s hand and gave it a squeeze. “Just hang loose and it’ll be all right. Show him we’re relaxed and we’ll walk right on by.”

Nope, not gonna happen. That’s what Manny’s body language said. He planted himself firmly in front of the bakery window and pressed his nose to the glass. He made little noises but not the ominous ones that forewarned of an eruption. These were more like happy noises, contented ones. If all their son wanted was a quick peek in a bakery window, then Tomas and Maria would oblige. How long can you wait, nonchalantly regarding bakery goodies?

11%     The gentleman was holding open the door. “Go in he said…” Inside the bakery, the woman behind the counter followed Manny’s gaze. “Got it. I see which one you want.” The man said, “That’s Ellie, she owns the place.”

The bell over the bakery door chimed. Running feet and a boisterous, high pitched voice announced, “Munchkin’s here!”
“Hello Munchkin. Just what did you do with my nephew, Kyle?
“I’m Kyle, silly.”

“Did you bring your mom and dad?” Mel and Ben hung up their coats and sat at the round table.

The man said, ”Mel, you might be interested in that boy over there…” Mel got his meaning. She was a teacher at a school for kids who learned differently.

13%     Mel appeared at their table, kneeling beside Manny. She put a device on the table and rubbed her finger over the glass surface. The picture of the bakery snagged Manny’s attention.

14%     “That’s called a social story. A woman named Carol Gray came up with the idea and it really works. I made that one for our son. He used to have trouble transitioning from one thing to another. If he liked something, he never wanted it to end. And, he really likes this bakery. So, we made a story for him. We’d read it before we’d come to the bakery and again when we got here. Then, I’d pull it out just before we were ready to leave. It worked and he got better,” Mel said.

“Our Manny, he does not read.” 

Autism by Hand by Lorca Damon, eBook 2011 Edition; an Extended Review with < My Thoughts > by Sara Luker

1%          I never wanted to write this book. I can’t write this book, it hurts too much. But I have to because this book wasn’t there when I needed it. It’s not a human-interest story or a self-help book or an instruction manual on how to raise an autistic child. It’s simply a well-thought-out laundry list of everything I did to help my daughter be the best person she could become and I did it in the dark because this book wasn’t there for me.
 
My daughter, Carrie, was diagnosed almost seven years ago. With everything. PDD-NOS (Pervasive Developmental Disorder, term now used interchangeably with ASD ), (ASD) Autism Spectrum Disorder, Static Encephalopathy (brain disorder which may or may not be permanent), Bipolar Disorder (experiencing periods of unusually elevated or depressed moods), and in the words of one specialist, Full-Blown Autism. I didn’t even know that last one was a real medical condition.
 
Fortunately, Carrie was very young when she was diagnosed. She was barely thirteen months old when her pediatrician first mentioned that he was concerned about the fact that she wasn’t reaching her milestones. The fact that she wasn’t able to walk, talk, drink from a cup, or sit up without help should have worried me, too, but she was my smiling, pudgy little baby and I wasn’t very concerned.
​
It wasn’t until a different doctor voiced his concerns that I really began to wonder.
 
Over the next several months we saw professional after specialist after expert until finally we were given a final diagnosis: Carrie was somewhere on the autism spectrum and none of the specialists we saw seemed to think she was anywhere close to the high-functioning end of the arc.
 
Like most parents in my situation, I dove in head first in trying to find out everything I could about autism and how it was going to affect my child.
 
I didn’t need to know the scientific history of autism, I needed to know how to potty train my daughter. I needed to know how to teach her to talk or what to do when the day finally came that she had to go to school or had a crush on a boy or got her period. Was she every going to have a job, a checking account, and a car payment? All the research that was being done to make discoveries down the road didn’t help me with my daughter’s struggles today.
 
I am, however, a teacher and a mother who has been there, so this book is simply the strategies that I learned from working with my autistic child.
 
2%          I’m basically telling you like it is the way your best friend would if she wasn’t worried about hurting you and if she didn’t feel like she doesn’t have the right, just because she doesn’t have an autistic child.
 
It’s time for tough love: your child is autistic. Stop saying he’s “a little bit autistic,” or my favorite, “he’s somewhere on the spectrum.” We’re all somewhere on the spectrum! We’re at the “not autistic” end! And please stop referring to you other children or your autistic child’s classmates as “neuro-typical.” They’re normal. Your autistic child is not. There I said it. Now we can move on.

​Autism: Why I Love Kids with Autism, by Doris Duan-Young, eBook 2014 Edition; an Extended Review with < My Thoughts > by Sara Luker

(13% indicates location in the Kindle version of the book, instead of page numbers.)

Excerpts from this book...
   
13%     When my son Norden was four years old he began to exhibit some concerning behaviors. I was worried. Even with all my experience I went through all the stages of uncertainty, denial, and worry that I had seen other mothers go through.
 
Norden’s situation wasn’t extreme, but it was concerning.
 
My entire professional life has been immersed in learning how to help kids, and how to help their parents. That’s what “behavior analysts” do. At the simplest level we analyze behavior and create a plan to create new behaviors. At the deepest level we become part of the family.
 
4%       The most valuable thing I can share is my perspective. I’ve had a lifetime of experiences and witnessed the transformation of thousands of children.

I began my career working in the field as a behavior analyst. After the company I worked for filed for bankruptcy, I decided to start my own company, with my husband Samuel.

That was 1999. We started in our kitchen, just the two of us. After 20 years and helping over 20,000 families, we have autism centers worldwide.

My highest core value is unconditional love. I know that anybody reading this book will know that this book is written from the heart.

I understand children are so much more than the labels we put in front of them. I understand that children who are diagnosed with autism are far more than just “kids with autism.” They’re artists, athletes, and dancers. They’re friends. They’re multi-faceted just like the rest of us. I truly understand.

6%       There is always a reason for hope. No matter what your situation now, it’s not as bad as you think. No matter where you are now in life, I can assure you one thing. You’re going to have some of the best days of your life, and some of the worst. The trick is knowing which is which.

Parents of children who’ve been diagnosed being somewhere on the autism spectrum only have a sample size of ‘one child’ to learn from.
 
< My Thoughts >     “…only one child to learn from.”
 
In her book Doris explains that she opens group homes with a family setting model. The children are under the supervision of experienced practitioners who follow her program. Each child living in her home has an individual plan designed specifically for them. In order to know how to best address these severe behaviors, trained professionals develop systematic and descriptive behavioral assessments, functional analyses and intervention methods to help the child make positives changes in his or her behavior. This is a process which may take many months, even a year or more to accomplish. Autism is a lifelong diagnosis, but with successful intervention many children go on to become productive adults. 

 7%       This isn’t some new age, psycho-babble, feel good strategy. This is science. Helping the parents first is part of the strategic plan to help the children. Think about it.

​He’s Not Autistic, But…How We Pulled Our Son from the Mouth of the Abyss 
by Tenna Merchent, eBooks 2007 Edition; an Extended Review with < My Thoughts > by Sara Luker

Excerpts from the book – (7% indicates location in the Kindle version of the book, instead of page numbers).

< Excerpts from – “An Important Message to the Reader” from author, Tenna Merchent… >
 
7%       This book is an account of my own experiences in seeking treatment for my son’s physical ailments.
 
Traditional Western medicine has its value and place.  I am simply sharing our experiences, what worked for us and what has not.
 
I strongly recommend that you consult conventional medical doctors before you make the decision to use these approaches so you will understand the risks of doing so.
 
< End of excerpts from – An Important Message to the Reader from author Tenna Merchant >
 
Excerpts from Tenna’s book…
 
7%       What was it like to write this book? It was a calling, a mission, an assignment. 
 
I kept thinking when Clay was sick, “I need to be writing this down. But I was too tired and too stressed.
 
I knew Clay was very sick – it wasn’t just back-to-back colds – but the pediatrician didn’t believe me.
 
8%       Writing this book also made me grateful. Clay has been healthy for a long time now; I sometimes take it for granted. 
 
Committing this story to paper vividly reminded me of how bad things really were, how miserable we all were, and how desperate I was to find answers. I always want to be grateful for this miraculous gift.
 
If you are reading this, you or someone you love probably has aluminum, yeast, parasites, or reverse polarity.
 
9%       Now that I’ve written this story and some of my loved ones have read it, they really understand how hard things were.
 
It’s also frightening to write about something so unconventional. Many people accept stories of healing in the Bible; nevertheless, most do not believe it can happen today. Healing does take place today. God still works miracles. I know, because I’ve lived them.
 
I talk about God and Jesus in this book. If you are of another faith, please feel free to use the name of your divinity instead. The story of our illness and recovery is too important to be overlooked because of religious differences.
 
10% - 12%      “He’s Not Autistic, But…”
                        

• For no reason, he bangs his head on window ledges, asphalt, the floor, and with his hands.
• He frequently walks on his toes, and sometimes spins in circles. 
• He’s extremely allergic to milk, corn, soy, eggs, oats, chocolate, feathers, and dust. 

 
Those are just the things we know he’s allergic to. Eating is like walking through a minefield.

​
​I Wish I Were Engulfed in Flames: My Insane Life Raising Two Boys with Autism by Jeni Decker, eBook 2011 Edition; 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…”  (Star Coins)
 
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.”

​Making Peace with Autism: One Family’s Story of Struggle, Discovery & Unexpected Gifts by Susan Senator, eBook  2006 Edition; an Extended Review with < My Thoughts > by Sara Luker
 
Excerpts from the book – (3% indicates location in the Kindle version of the book, instead of page numbers).
 
< My Thoughts >      Susan Senator is the mother of three boys, the oldest of whom has autism. She is also the author of the The Autism Mom’s Survival Guide (for Dad’s too!): Creating a Balanced & Happy Life While Raising a Child with Autism (2011) and Autism Adulthood: Strategies & Insights for a Fulfilling Life (2016); among others.

Excerpts from the book >
 
3%       Making Peace with Autism is the story of a family – a husband, wife and three sons – and our struggle to incorporate our oldest son’s autism into our lives. With this book I hope to convey that despite the tremendous challenges that autism brings, you can find happiness as a family – even if you don’t find a miracle cure. Here’s how we’ve done it.
 
We as a family are frequently hamstrung by Nat’s unpredictability, our plans held hostage by autism. We can never simply go to a concert, a movie, a friend’s party without first wondering, “Can Nat Handle it?” despite intensive schooling and our Herculean efforts, he still has tantrums, and even when he doesn’t, he can be just plain unpleasant, unhappy, or embarrassing in public.
 
6%       I talked and read to the baby in utero. I read all kinds of mother-to-be books. We were so well prepared that we didn’t think anything could go wrong. This illusion was deepened by our comfortable backgrounds and the fact that we lived in a society that promoted the idea of family life as a Hallmark card. I dreamed about my baby, yearned for his arrival, but in a straight-out-of-Hollywood way.
 
7%       Nat was a beautiful baby, with tufts of white blond hair and violet eyes. A docile infant, he was so enchanting that people often stopped me to admire him. My first moments with him were ecstasy. He was all potential. Autism was not yet even a cloud on the horizon. But almost immediately, there was the rumble of distant thunder.
 
At the beginning, the signs were always fleeting, with a now-you-see-them, now-you-don’t quality. Everything I noticed or felt was subtle, flickering, momentary.
 
All my questions were so easily answered, my fears so quickly dismissed by doctors, family, Ned, and even me.
 
When did I first know something was amiss with Nat? Almost immediately. Something inside me told me that mothering a newborn was not supposed to feel so flat.
 
At first the autism came in little bursts, bad moments here and there, sprinklings of disappointment in what he did or didn’t do.

​Seeing Ezra: A Mother’s Story of Autism, Unconditional Love, and the Meaning of Normal by Kerry Cohen, eBook 2011 Edition; an Extended Review with < My Thoughts > by Sara Luker

(1% indicates location in the Kindle version of the book, instead of page numbers.)

1%       He twirls and dances through the world, laughing, humming. I am afraid I don’t have the language to describe him the right way.

​Do you see him? How he smiles slyly, how he sees you looking, how he hears everything and sometimes nothing. How he is just a child, like any other child, and also how he is different. How he is so much more, always, than you think he might be.

​He needs nothing. He just plays. He looks through books. He plays on the computer. He says a word to his brother Griffin, who wants most to thrill Ezra.

He doesn’t need us, not at all the way we need him. The three of us – Griffin, their father, Michael, and I – we follow Ezra, reaching for him, desperate in our love.

Ezra hugs and kisses us, he smiles, he gazes with affection. He doles out his love in necessary amounts. Who is this child whom I could not live without?

2%       His teachers and therapists spend endless amounts of energy trying to make him want more, but I am secretly envious of his self-containment.

But now he wants something. His want is simple. He wants more milk. He’s been talking for two and a half years now, but for reasons known only to him, he refuses to use this word.
“What was that Ezra? You say you want milk?” “Say yes,” I tell him. “Say yes, and I’ll give you milk.”

I know what he wants. He knows I know what he wants. But now I’ve got it in my head that he has to say “yes,” that he has to use the language I want him to use. It is one of the many dances Ezra and I go through. He does the same dance with his dad.

“Y-e-s,” I say. “What’s that spell?” “Whys,” he answers. I frown. “No, Ezra, not ‘Whys’. Y-e-s.” “Whys,” he says again… his face breaking into a smile.

“Whys.” He erupts into laughter. Oh, I wish you could see him, the way his eyes are like prisms of lights. “Ezra,” I say. I’m smiling now, too, impossible not to when he laughs like this.

Ezra, I say. “Tell me what does “Y-e-s” spell?” “Whys!” he can barely get it out he is laughing so hard. “Y-e-s!” “Whys!” “Whys, whys, whys!”

I break into laughter with him, giving in to him and his world. Why does it take me so long, when we are both so much happier here? We say the new word together again and again. “Whys, whys, whys!”

2%       The first time I hear the word ‘autism’ associated with Ezra, he is only a year old, and it comes from his young baby sitter. She is a nice girl, a little awkward, who seems to love Ezra from the start. As she’s about to leave I hear, “One thing I want to say,” she starts. I wait. I have no sense of the huge thing she’s about to say, no sense that life will forever be altered.

​The Journey to Normal: Our Family’s Life with Autism by I.D. Johnson, eBook 2014 Edition; an Extended Review with < My Thoughts > by Sara Luker
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Mom confides that sometimes Sophie asks her to "take the autism out of her brain."  But, aside from her lingering 'processing problems', Sophie is doing well and is now in the 4th grade. She is quite an artist, too. Here is one of her recent drawings, titled "Rocket"... I love the details and the perspective... amazing!