What Color is Monday? How Autism Changed One Family for the Better by Carrie Cariello, eBook 2015; an Extended Review with < My Thoughts > by Sara Luker
Excerpts from the book – (4% indicates location in the Kindle version of the book, instead of page numbers).
< My Thoughts >
When you read Carrie’s book, “What Color is Monday?” you will not only learn the colors of the week (per Jack), but you will find the most beautiful and poignant letters written for her children to cherish on their birthdays. Joyful and uplifting.
This author, Carrie Cariello, writes about how outraged she was when reading of a family whose son was recently diagnosed…
4% “Woman Fights to Save Her Son!” When I read this, I felt a surge of outrage. Save? Save? Oh, I remember those days, when thinking that somehow we had to help our son recover from his autism. To change him. To discard his diagnosis like a caterpillar escaping a cocoon, leaving us with a beautiful, bright-eyed boy who make eye contact and loved birthday parties. Now I know better.
I will write her a letter telling her to relax, not to worry, that it’s all going to work out. As I picked up my pen… I realized she probably wasn’t too interest in what I had to say.
But, I did think about what I wished someone had told me when Jack was first diagnosed, what I would have liked to have known.
So instead, I decided to write a letter to myself, dated the day two-year-old Jack was diagnosed… It’s been a long journey…
=====
4% Excerpts from Carrie’s “Note to Self” –
Dear Self,
It’s been a long journey leading up to this day, a long road of when will he talk and why doesn’t he recognize me. A long two years of tantrums, heartache, and the eerie quiet of a toddler who doesn’t speak.
He will surprise you every single day. You have some very long days ahead of you.
5% You are going to question your decisions.
It is essential to have mental and emotional breaks – otherwise autism will consume you altogether.
As you open your mind to autism, you’ll start to understand what it all means to him.
Your idea of a hero will change dramatically.
You will find new ways to channel your stress, things like running a marathon, and writing, and yoga.
He will teach you to see days as colors.
< My Thoughts > “…He will teach you to see days as colors.”
Gholipour (2013), educates us about seeing colors...
“‘Synesthesia’ appears in 19% of people with autism. People with autism report high levels of sensory hypersensitivity. A form of ‘synesthesia’ reported was that tastes, touch, or smells trigger a visual experience of color.”
3% Jack’s going to latch on to subjects, things like cars and license plates and seemingly random dates.
4% Slowly, steadily you’re going to see Jack for everything he ‘is’ rather than what he ‘is not’.
As you continue to open your own mind to autism, you’ll start to understand what it all means to him. And so it will be meaningful to you.
6% And although you’ll start to understand that you can’t save Jack, you will never, ever give up on this incredible boy.
Right now, you’re thinking you can fix him, that he will outgrow this. But you can’t, and he won’t.
< My Thoughts > My website is designed to hold stories which I hope will help you as they have helped others push past the denial of autism and to begin to embrace the possibilities of autism. As a teacher, it is heartbreaking for me to see parents and caregivers who keep insisting on pursuing what the child ‘can’t’ do instead of embracing what the child ‘can’ do.
5% At times you are going to marvel at his progress, his giant leaps in communication and social behavior. Then for a while, nothing. His development will level off, and you’ll fight a rising panic that he’ll never move forward again.
< My Thoughts > “…you’re thinking you can fix him…”
In an article by Rossetti, et al., (2008), based on a qualitative research project conducted with individuals labeled with autism, the participants made the following things known –
An adult participant typed on his communication device… “Although I am beset by the drudgery of autism I like others to not try to FIX me. I like to decide what I want for myself.’
Another commented, “Independence to me is only pleasing myself and not others.” While yet another participant made this high-pitched vocalization, “Independence isn’t doing YOUR ideas!”
This research study came to the conclusion that ‘independence’ meant – ‘expressing agency’ by “sharing in an interaction, making choices, taking a stand, adding one’s self through personality or humor, and to have a place in the conversation.”
5% Don’t worry. Like the steps on a staircase, his pattern will be to jump up and then stand still for a while.
6% He’s eight now, and I can’t wait for you to meet him.
End of excerpts from Carrie’s “Note to Self”
Yoga Picture from – http://fitnessista.com/focus-on-bikram-yoga/
=====
Excerpts from Carrie Cariello’s book with < My Thoughts > by Sara Luker
9% On March 22nd, 2003, we welcomed our son, Joseph Anthony Cariello. We were thrilled and no one was prouder of his new son and namesake that Joe, a devoted father from the very first moment.
10% Then… with the maternity clothes barely packed away… we announced to surprised family and friends that I was expecting again. On Mother’s Day of 2004, John Michael made his way into the world. We called him ‘Jack’ right away.
From the beginning… Jack emerged coughing, sneezing, and fussing. He developed congestion when he was about three weeks old and battled a seal-like bark and a dripping nose from that point forward.
Having a constantly sick baby was incredibly stressful. Joe and I worried about him nonstop and we were exhausted from walking him around the house night after night to soothe his ear pain.
Eventually five-month-old Jack landed in the operating room where he had tubes inserted in his ear drums and his adenoids removed.
< My Thoughts > “…ear-tubes…”
Sonny had ear-tubes when he first came to us as a foster child, but we didn’t know that. Because he kept pulling on his ears, I asked to take him to an Ear, Nose & Throat (ENT) Specialist. The doctor saw the tubes, plus what he called some potatoes and carrots (ENT talk for debris) in Sonny’s ears, both of them.
He proceeded to strap him on a ‘papoose’ board (honest, that’s what he called it… it looked like an ironing board with straps) and began to extract the offenders. Did Sonny scream and yell… Nope, he smiled with relief. The moral of this story is that ear-tubes can serve their purpose, but don’t forget that they are in there!
10% The medical concerns of reflux and ear infections had been addressed, but we soon faced other concerns.
I can’t point to any particular light-bulb moment when I knew with certainty that Jack had autism, but I always had a gnawing pit in my stomach and a strong sense that something was not right.
11% Autism unfolds differently in each individual; some demonstrate symptoms very early on while others grow and interact normally for a while and then seemingly morph into another person altogether.
< My Thoughts > “…seemingly morph into another person altogether.”
Some scientific types believe that instead of ‘morphing’, or taking on a variety of forms, their brain waves are really are ‘untangling’. Across various studies they talk about the ‘delay in onset indicators’. Seemingly to mean that the child seems okay and able to meet their developmental milestones, then suddenly they seem to ‘regress’. With that regression comes the fear that the child will not overcome, as one article states, “the many challenges that autistic individuals face as they mature-- learning, communicating with others, making and keeping friends, building life skills, securing a job, finding love.”
11% From what I’ve read and heard from other parents, the development of this tricky disorder is as unique as the minds of autistic people themselves.
I waited for him to recognize me, but to Jack we were more like tools than people. He would take my arm and lead me to the refrigerator or to a toy he wanted, placing my hand on the desired object.
…my husband would point to me and repeat, “Mommy! Jack, look at Mommy! This is Mommy.” But Jack seemed to have no idea who we were. It was chilling.
When Jack was about 8 months old, our pediatrician referred us to Early Intervention Services for an evaluation, and we started to acquaint ourselves with unfamiliar terms like “joint attention” and “self-directed.”
< My Thoughts > Joint attention…
Joint Attention: This is the most difficult communicative function for children with autism spectrum disorder to develop (6). These communicative acts are used to direct another's attention to an object, event, or topic of a communicative act. Joint attention communication acts include:
11% Joint attention is when two (or more) people share attention or emotion about the same thing…Jack had no such skill. He never engaged us for anything – he preferred doing things completely by himself, like getting milk or a toy rather than trying to communicate his needs. This behavior, we were told, showed how Jack was “self-directed.”
12% By the time Jack was sixteen months, we had a speech therapist and a special education teacher working with him weekly and we were still having him tested to figure out the source of his language delay.
< My Thoughts > “…we had a speech therapist…”
Parents often ask me… “Why spend time with a speech therapist when he doesn’t talk?” Speech therapists work on so many other forms of communication and social skills. For example, when playing a simple game, the therapist teaches ‘joint attention’ through turn-taking, waiting for the child to ‘initiate’ the next move, and to show ‘anticipation’ of what is going to happen next. To get a sense of whether of not the child can ‘predict’ what others are thinking or going to do, that will either help them or harm them.
A child with autism is usually self-centered and not connected enough to another person to ‘anticipate’ what they are going to do or say. I am tempted to say… ‘Nor do they care.’ But, those who
Excerpts from the book – (4% indicates location in the Kindle version of the book, instead of page numbers).
< My Thoughts >
When you read Carrie’s book, “What Color is Monday?” you will not only learn the colors of the week (per Jack), but you will find the most beautiful and poignant letters written for her children to cherish on their birthdays. Joyful and uplifting.
This author, Carrie Cariello, writes about how outraged she was when reading of a family whose son was recently diagnosed…
4% “Woman Fights to Save Her Son!” When I read this, I felt a surge of outrage. Save? Save? Oh, I remember those days, when thinking that somehow we had to help our son recover from his autism. To change him. To discard his diagnosis like a caterpillar escaping a cocoon, leaving us with a beautiful, bright-eyed boy who make eye contact and loved birthday parties. Now I know better.
I will write her a letter telling her to relax, not to worry, that it’s all going to work out. As I picked up my pen… I realized she probably wasn’t too interest in what I had to say.
But, I did think about what I wished someone had told me when Jack was first diagnosed, what I would have liked to have known.
So instead, I decided to write a letter to myself, dated the day two-year-old Jack was diagnosed… It’s been a long journey…
=====
4% Excerpts from Carrie’s “Note to Self” –
Dear Self,
It’s been a long journey leading up to this day, a long road of when will he talk and why doesn’t he recognize me. A long two years of tantrums, heartache, and the eerie quiet of a toddler who doesn’t speak.
He will surprise you every single day. You have some very long days ahead of you.
5% You are going to question your decisions.
It is essential to have mental and emotional breaks – otherwise autism will consume you altogether.
As you open your mind to autism, you’ll start to understand what it all means to him.
Your idea of a hero will change dramatically.
You will find new ways to channel your stress, things like running a marathon, and writing, and yoga.
He will teach you to see days as colors.
< My Thoughts > “…He will teach you to see days as colors.”
Gholipour (2013), educates us about seeing colors...
“‘Synesthesia’ appears in 19% of people with autism. People with autism report high levels of sensory hypersensitivity. A form of ‘synesthesia’ reported was that tastes, touch, or smells trigger a visual experience of color.”
3% Jack’s going to latch on to subjects, things like cars and license plates and seemingly random dates.
4% Slowly, steadily you’re going to see Jack for everything he ‘is’ rather than what he ‘is not’.
As you continue to open your own mind to autism, you’ll start to understand what it all means to him. And so it will be meaningful to you.
6% And although you’ll start to understand that you can’t save Jack, you will never, ever give up on this incredible boy.
Right now, you’re thinking you can fix him, that he will outgrow this. But you can’t, and he won’t.
< My Thoughts > My website is designed to hold stories which I hope will help you as they have helped others push past the denial of autism and to begin to embrace the possibilities of autism. As a teacher, it is heartbreaking for me to see parents and caregivers who keep insisting on pursuing what the child ‘can’t’ do instead of embracing what the child ‘can’ do.
5% At times you are going to marvel at his progress, his giant leaps in communication and social behavior. Then for a while, nothing. His development will level off, and you’ll fight a rising panic that he’ll never move forward again.
< My Thoughts > “…you’re thinking you can fix him…”
In an article by Rossetti, et al., (2008), based on a qualitative research project conducted with individuals labeled with autism, the participants made the following things known –
An adult participant typed on his communication device… “Although I am beset by the drudgery of autism I like others to not try to FIX me. I like to decide what I want for myself.’
Another commented, “Independence to me is only pleasing myself and not others.” While yet another participant made this high-pitched vocalization, “Independence isn’t doing YOUR ideas!”
This research study came to the conclusion that ‘independence’ meant – ‘expressing agency’ by “sharing in an interaction, making choices, taking a stand, adding one’s self through personality or humor, and to have a place in the conversation.”
5% Don’t worry. Like the steps on a staircase, his pattern will be to jump up and then stand still for a while.
6% He’s eight now, and I can’t wait for you to meet him.
End of excerpts from Carrie’s “Note to Self”
Yoga Picture from – http://fitnessista.com/focus-on-bikram-yoga/
=====
Excerpts from Carrie Cariello’s book with < My Thoughts > by Sara Luker
9% On March 22nd, 2003, we welcomed our son, Joseph Anthony Cariello. We were thrilled and no one was prouder of his new son and namesake that Joe, a devoted father from the very first moment.
10% Then… with the maternity clothes barely packed away… we announced to surprised family and friends that I was expecting again. On Mother’s Day of 2004, John Michael made his way into the world. We called him ‘Jack’ right away.
From the beginning… Jack emerged coughing, sneezing, and fussing. He developed congestion when he was about three weeks old and battled a seal-like bark and a dripping nose from that point forward.
Having a constantly sick baby was incredibly stressful. Joe and I worried about him nonstop and we were exhausted from walking him around the house night after night to soothe his ear pain.
Eventually five-month-old Jack landed in the operating room where he had tubes inserted in his ear drums and his adenoids removed.
< My Thoughts > “…ear-tubes…”
Sonny had ear-tubes when he first came to us as a foster child, but we didn’t know that. Because he kept pulling on his ears, I asked to take him to an Ear, Nose & Throat (ENT) Specialist. The doctor saw the tubes, plus what he called some potatoes and carrots (ENT talk for debris) in Sonny’s ears, both of them.
He proceeded to strap him on a ‘papoose’ board (honest, that’s what he called it… it looked like an ironing board with straps) and began to extract the offenders. Did Sonny scream and yell… Nope, he smiled with relief. The moral of this story is that ear-tubes can serve their purpose, but don’t forget that they are in there!
10% The medical concerns of reflux and ear infections had been addressed, but we soon faced other concerns.
I can’t point to any particular light-bulb moment when I knew with certainty that Jack had autism, but I always had a gnawing pit in my stomach and a strong sense that something was not right.
11% Autism unfolds differently in each individual; some demonstrate symptoms very early on while others grow and interact normally for a while and then seemingly morph into another person altogether.
< My Thoughts > “…seemingly morph into another person altogether.”
Some scientific types believe that instead of ‘morphing’, or taking on a variety of forms, their brain waves are really are ‘untangling’. Across various studies they talk about the ‘delay in onset indicators’. Seemingly to mean that the child seems okay and able to meet their developmental milestones, then suddenly they seem to ‘regress’. With that regression comes the fear that the child will not overcome, as one article states, “the many challenges that autistic individuals face as they mature-- learning, communicating with others, making and keeping friends, building life skills, securing a job, finding love.”
11% From what I’ve read and heard from other parents, the development of this tricky disorder is as unique as the minds of autistic people themselves.
I waited for him to recognize me, but to Jack we were more like tools than people. He would take my arm and lead me to the refrigerator or to a toy he wanted, placing my hand on the desired object.
…my husband would point to me and repeat, “Mommy! Jack, look at Mommy! This is Mommy.” But Jack seemed to have no idea who we were. It was chilling.
When Jack was about 8 months old, our pediatrician referred us to Early Intervention Services for an evaluation, and we started to acquaint ourselves with unfamiliar terms like “joint attention” and “self-directed.”
< My Thoughts > Joint attention…
Joint Attention: This is the most difficult communicative function for children with autism spectrum disorder to develop (6). These communicative acts are used to direct another's attention to an object, event, or topic of a communicative act. Joint attention communication acts include:
- Commenting (e.g., a baby looking at his parent and pointing to the sky at an airplane overhead. The child is not requesting the airplane but commenting about it, drawing another person's attention to this object);
- Requesting information from others (e.g., the child asks another "Where did you go?").
- Giving information to others (e.g., the child gives information about something that is not obvious or known to another person: "I went to the fair last night")
11% Joint attention is when two (or more) people share attention or emotion about the same thing…Jack had no such skill. He never engaged us for anything – he preferred doing things completely by himself, like getting milk or a toy rather than trying to communicate his needs. This behavior, we were told, showed how Jack was “self-directed.”
12% By the time Jack was sixteen months, we had a speech therapist and a special education teacher working with him weekly and we were still having him tested to figure out the source of his language delay.
< My Thoughts > “…we had a speech therapist…”
Parents often ask me… “Why spend time with a speech therapist when he doesn’t talk?” Speech therapists work on so many other forms of communication and social skills. For example, when playing a simple game, the therapist teaches ‘joint attention’ through turn-taking, waiting for the child to ‘initiate’ the next move, and to show ‘anticipation’ of what is going to happen next. To get a sense of whether of not the child can ‘predict’ what others are thinking or going to do, that will either help them or harm them.
A child with autism is usually self-centered and not connected enough to another person to ‘anticipate’ what they are going to do or say. I am tempted to say… ‘Nor do they care.’ But, those who