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…
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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/
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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 can verbalize say they ‘do care’ they just get so overwhelmed by all the stimuli around them that it’s easier if they withdraw into themselves.
Another thing that a speech therapist does is a series of formal or informal assessments of the child’s ‘receptive & expressive’ language. ‘Receptive’ language is basically recognizing the words they hear. While ‘expressive’ language is being able to say the words they need to express themselves.
12% Even though I knew that Jack could hear someone open a bag of animal crackers from three rooms away, I fostered a tiny seed of foolish hope that maybe, just maybe, he was hearing impaired and that all of this could be solved with a simple crash course in sign language. Nope, not deaf.
13% “Does he ever come to you for comfort when he’s hurt?” that very question, that very moment, crystallized every fear I’d ever had about my beautiful brown-haired, blue-eyed son.
I’ve heard parents of autistic children describe a period of grieving and bereavement immediately after having the diagnosis…
Frankly, I was relieved to have a name for it, to be able to explain why Jack would rather spend the day with the vacuum than with his friends. It was a relief that I wasn’t crazy. Something was amiss with our adorable little boy, and we needed help.
We accepted the diagnosis and forged ahead, getting Jack into as many services as we could. I do think in the back of our minds we both harbored the notion that he would outgrow this, that his symptoms would diminish and he would blossom into a typical child.
14% Jack was very difficult that spring. In his preschool back in Buffalo he’d started biting and kicking both kids and teachers, and everyone seemed at a loss as to how to control his behavior. At home he’d started to hit both Joe and I, and to get into mischief…
< My Thoughts > “…he’d started to hit both Joe and I…”
Frea, et al. (2001), tell us that “…exhibiting extremely challenging behaviors can be improved with some sort of intact communication system which allows the child to express choices and preferences, in all settings.”
15% We had started some rudimentary means of communication by posting pictures of his favorite items around the house so he could point to things he needed, but his language was limited to about ten words.
< My Thoughts > “…rudimentary means of communication…”
Does the child have or understand the “need” to communicate? What is the payoff for the child? Susan Stokes, Autism Consultant (2007), believes that “the child must be able to understand the ‘purpose’ of the communication.”
I’m thinking that in 'rudimentary communication' it would be much like a crying newborn. Why is he crying? What is he communicating? Wet, hungry, uncomfortable, cold, hot, scared, or just a shout out to see if anyone is there.
This is another slippery slope with Sonny. If he doesn’t intuit that he wants something or that he’s on sensory overload… the he just goes into his ‘flight or fight’ response. He overrides his ADHD medication and starts bussing like a bee… stinging whatever or whomever crosses his path.
15% In conjunction with his speech therapist and the integrated preschool, Joe and I were doing our best to figure out our enigmatic little boy.
In July, I gave birth to a little girl. Joe’s (dental) practice was thriving and I was home with another newborn.
16% Nine months later, ten-pound, four ounce Henry bulldozed his way out of my body and into the world – the equivalent of a human meatball.
17% Just as autism varies from person to person over time…as Jack gets older, his autism changes year by year.
I’m reminded of a snowflake, one inside of him, drifting, melting, and then re-crystallizing.
Snowflakes … autistic people are like snowflakes…all similar yet essentially unique.
People will remark about how normal he appears. Then without warning, the snowstorm will begin again.
At three, Jack started to make a lot of progress. Settled in the early education program in New Hampshire, he was making great gains in the areas of speech and language.
And then, nothing…by fall he seemed at a standstill. We moved through this cycle of progress and behavioral problems for the next five years.
< My Thoughts > I call it traveling over the peaks and through valleys… or, ‘Peaks & Valleys’ for short.
18% Over the course of seven years, Jack had changed so much from that initial list of autism symptoms; he was a different boy entirely.
He is extremely affectionate and loving…for example, and can finish my sentences and read nonverbal cues (such as a warning look) from across the room.
< My Thoughts > “…He is extremely affectionate and loving…”
One of the main reasons an older student of mine was ‘disqualified’ for services was because he was sometimes ‘friendly’, and ‘affectionate’, and had a lot of language and conversation. Hello! By the time they become adolescents, they see being friendly as a way to ‘manipulate’ their surroundings. No one has ever said that a child with autism couldn’t be manipulative and crafty! Besides, the language and lengthy conversations are always about the computer games he plays. Eeee Gads it’s called ‘perseverating’!
18% On the flip side, Jack has a tendency to do what’s called perseverating; he focuses repetitively on random subjects, sometimes for months.
…cars, license plates, radios, and even what color of shampoo people use.
In school, he’s prone to huge meltdowns and tantrums. Self stimulation. When Jack ‘stims’, he looks as though he’s possessed, as if someone else has control of his body.
Common self stimulation practices include things like hand-flapping and humming. Jack tends to gallop across the room with his fingers in his mouth and to grunt or loudly clear his throat. We call it his “zoomies.”
19% The doctor recommended neurophysychological testing to get an accurate picture of exactly how Jack thinks and reacts in certain situations.
Much of Jack’s issues, it turns out, are related to sensory integration and his own internal regulation. …he struggles with regulation, cognitive flexibility, working memory and processing, and auditory and visual complexity.
21% Jack’s limited working memory results in significant communication challenges. In his mind words are as slippery as falling snowflakes, and as quickly as he grabs hold of one idea, another one slides out of his cerebral grasp.
When he’s asked a question it’s as though he has to mentally bend down and retrieve that one idea out of many, re-examine it, and figure out if it’s what he needs. It takes him a while to answer.
< My Thoughts > “When he’s asked a question it’s as though he has to mentally bend down and retrieve that one idea out of many, re-examine it, and figure out if it’s what he needs. It takes him a while to answer.” This so perfectly states what I think that many children with autism through. In fact, when hearing the words “developmental delay”… people often think that the child has mental processing issues, or thinking delays. When in fact it means that they are ‘delayed’ in meeting their traditional developmental milestones. Such as… time to respond to mother’s voice, time to turn head to sounds, time to babble… and so forth.
57% Literal boys like Jack, boys who start looking around wildly for giraffes when their mother announces that the Walmart parking lot is a zoo!
21% As a literally thinker… he has trouble with cognitive flexibility and ‘theory of mind’. An aspect of social cognition, ‘theory of mind’ is the ability to understand that others have beliefs, opinions, and feelings different than your own. Jack however, thinks everyone sees and feels and likes the same things he does.
< My Thoughts > “…everyone sees and feels and likes the same things he does.”
‘Theory of Mind’ is thinking that everyone is having the same ‘sensory experience’ that you are.
23% How do you increase a person’s ‘theory of mind’ and help them understand that others think and feel differently?
With the help of our psychologist, we…created a strategy to increase his (Jack’s) ability in each of the identified areas:
Essentially, we wanted him to learn to stretch himself, like a rubber band but also to have the skills he needed to identify his breaking point before he snapped.
< My Thoughts > “…needed to identify his breaking point before he snapped.”
Another slippery slope… today’s ‘breaking point’ may not be yesterday’s ‘breaking point’. I have noticed with Sonny that what happened several days ago may be festering in his mind and finally, when something happens today… it sets him off it’s because the original situation was never resolved to his satisfaction. Am I making any sense? I’ll try an example… two days ago; he was looking for a Hot Wheels car (I thought). After we looked everywhere… we couldn’t find it. Then today when he couldn’t find a book he was looking for… he went off, i.e. ‘breaking point’. But, finding the book wasn’t enough… because we still couldn’t find the car. If I had known which car it was that he saw in his mind’s eye… I would have gone out and bought him another one. Some nosey person would say I spoil him… I say… define spoil!!!
23% I started to observe his regulation more closely and took note of when his body seemed calm and his mind more open... (…as opposed to his looking and feeling distressed).
Jack adapts to his surroundings and learns best when his body feels ready…
…when the ants of self-stimulation are quiet and his mind is calm.
Exercise and movement are essential for him to feel regulated.
If we notice he has the “zoomies” and needs to stim (Self-stimulation), we direct him towards the mini-trampoline, inside…or to his bike, outside.
Sometimes I just wanted to let him watch those baby Einstein movies he loved so much, to be and let be. And sometimes I did.
< My Thoughts > “Exercise and movement are essential for him to feel regulated.”
Rudy (2011) believes that “People with autism are no different from anyone else when it comes to the relationship between exercise and well-being. The sedentary autistic child becomes a sedentary teen and adult. Without exercise, people with autism are at the same risk as everyone else for issues such as obesity, diabetes and high blood pressure (to name just a few possible outcomes). Unlike many other people, though, folks with autism may not be sedentary out of choice, but rather because they are not encouraged or supported in physical activities that might be right for them.”
23% But for the most part, we were consistent in our efforts to draw him out and pull him towards us.
24% Joe and I have incorporated our psychologist’s concept of “low and slow” into our parenting approach.
I prefer “high and fast” myself. It’s taken a fair amount of practice for me to slow down and lower my voice when I’m agitated. All of us are slowly stretching.
Low and slow means pretty much what it says: keep your voice low and your words slow.
< My Thoughts > “I prefer “high and fast” myself.”
Van Steijn, et al., (2011), suspect that ADHD symptoms are “obtained from the parents and were related to their offspring.” Those parents genetically “influence patterns of inattentiveness and hyperactive-impulsive symptoms in their offspring as well.” Never a point of blame… but, only a point of information. Just saying that one needs to stop the ‘zoomies’ long enough to eat, drink, and learn new skills.
25% I do have to remind the kids to keep it low and slow for Jack, to give him time to listen and respond.
Basically we all have to accept his limitations and give him the space to flex his mind.
We brainstorm about different ways we can spend our afternoon. For example, or if time allows, I’ll sometimes take a different route home so that Jack sees there is more than one path to travel.
65% On January 2011, seven-year-old Jack’s behavior started to change more dramatically. He was afraid of ordinary things.
69% From peeing in the morning to showering at night, every move had become a slow torturous crawl through the muddy waters of his anxiety.
68% Medication seemed like a last resort to us, and Joe and I resolved to explore alternative methods to help Jack cope.
…we couldn’t imagine having him taking anti-anxiety medicine every single day, potentially for the rest of his life.
Instead, for a month, the occupational therapist brushed him at school and Joe and I took turns at home.
(Brushing technique called the Wilbarger Protocol to reduce sensory defensiveness by using a small brush to apply pressure on the limbs and back.)
< My Thoughts > Here is one website with information on the Wilbarger Protocol. http://www.sensory-processing-disorder.com/wilbarger-deep-pressure-protocol.html
68% Each morning I wept as I drove downtown to yoga class, thinking about how scared I was that Jack would never get better. These long three months took a toll on our family. As a mother I have never felt so fragile.
81% During my first Bikram (yoga) class I felt as though I’d alighted in a foreign land… I didn’t have the right clothes, I couldn’t understand the language, and my body felt too large and clunky for the graceful poses.
That first class gave me a valuable glimpse into what Jack faces every day as he navigates through our world, a world with rules and regulations blurred by autism.
I imagine that in his world the commands are as confusing to him as the instructions for Awkward Pose (in yoga) first were to me.
82% My instructor often reminds me – “focused gaze,” during class, a technique used to develop concentration. …I’m uncomfortable having someone repeatedly encouraging me to “Make eye contact.”
This phase of course is not new to me. Ever since Jack was a year old we’ve been urging (and sometimes commanding) him to make eye contact with us. A “focused gaze”.
< My Thoughts > “…focused gaze”.
Retrieved from – https://bikramyogachaddsford.com/
“FOCUS YOUR EYES one point. DON’T EVEN BLINK. The time and effort that you devote to yoga teaches you to move your eyes systematically, so that you focus on what matters most to YOU. A focused gaze creates concentration and safety. It’s MIND BLOWING!”
83% Because with life, with yoga, and especially with Jack, all I need to do is believe, breathe, and stay in the room.
< My Thoughts > It’s tai chi for me. The improvement in mind and body is so subtle but effective. I haven’t learned it well enough yet to practice on my own, but I do so enjoy going to a class.
68% I was scared that Jack would never get better, that I would never again see the happy little boy who had disappeared underneath this layer of distress.
< My Thoughts > “…the happy little boy who had disappeared underneath this layer of distress.”
There are those out there who bristle, even publically rebel against parents who rush in to ‘save’ their child from the jaws of autism. But, as a parent and teacher, how does one stand by and let the jaws of autism swallow-up a child?
When we first had Sonny all to ourselves, and me being a ‘health nut’ since adolescence, I tried taking him off of all meds. What a mistake! The chaos that followed tore at my heart. The level of Sonny’s anxiety and distress was so high that he basically spent the day running around the house banging his head, screaming, and biting himself and the furniture.
Finally we found a doctor who was able to examine the meds, find the ones with the least side-effects and slowly bring back some quality of life for him. His appetite returned, but not before he became dehydrated and his weight dangerously low. This is always such a scary process, which we have put him through several times, when adjusting meds and introducing seizure medications that conflicted with current meds.
69% We hit rock bottom one chilly night at the end of March. On the car ride home from (a draining experience at the restaurant, we decided to fill the (doctor’s prescription).
It took just a few days to build up in his system, and by the end of the week Jack began the ascent out of his pit of despair. He returned to us.
70% Once opposed to daily medication, now every night before bed we holler out, “Jack! You need your PILL!”
< My Thoughts > “Jack! You need your PILL!”
Sonny even has a button on his Assistive Technology devise that he can push when he feels the need.
70% Jack smiles every day now. And that is something I will never get too used to.
85% (Our family) – All in all, we’re a quirky group. I guess the question is where does quirky end and autism begin? Is the whole world autistic?
I decided there’s something else standing between the rest of us and a diagnosis: TOLERANCE.
86% Joey, Charlie, Rose and Henry are not diagnosed with autism, but they do have challenges that we need to understand and solve. (We) stretch ourselves in areas that we normally find uncomfortable.
As parents (our) job is to give four boys and one girl the skills they need to cope with the challenges they face…whether it be anxiety or sensory processing or the wiggles.
38% Every year I write each of my children a letter on their birthday and keep it in a small journal.
< My Thoughts > Every year I write each of my children a letter on their birthday and keep it in a small journal.
What a wonderful idea that she documents their life in such a way. Her children must treasure those letters.
89% …in the past six years, I’ve learned there is no “fixing” when it comes to Jack and his autism. Rather, we need to fix ourselves so that we can better understand and appreciate him.
94% Sometimes I just have to step back and let the magic unfold on its own, to give Jack a chance to experience the world without my interpretation.
95% And one of the most interesting lessons I’ve learned from Jack? Monday is blue.
< End of excerpts from Carrie’s book >
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References used in < My Thoughts > are:
Frea, W., Arnold, C., Vittimberga, G., Koegel, R. (2001). A Demonstration of the Effects of Augmentative Communication on the Extreme Aggressive Behavior of a Child With Autism Within an Integrated Preschool Setting; Journal of Positive Behavior Interventions; Vol.3:4, p194.
Gholipour, B., (2013). People with Autism More Likely to Hear Colors, See Sounds; Live Science Magazine. Retrieved from – http://www.livescience.com/41352-autism-mixes-up-senses-synesthesia.html
Rossetti, Z., Ashby, C., Arndt, K., Chadwick, M. & Kasahara, M. (2008). “I Like Others to Not Try to Fix Me”: Agency, Independence, & Autism; American Association on Intellectual & Developmental Disabilities,Vol.46:5; 364-375.
Rudy, L. J. (2011). Why Autism and Physical Activity Should Go Together. Retrieved from:
http://www.autismafter16.com/article/12-09-2011/winning-match-fitness-and-autism
Steedman, W. (2016) tells us in “8 Steps to a Successful IEP”. Retrieved from: http://www.greatschools.org/gk/articles/iep-for-autism/
Susan Stokes, Autism Consultant (2007), Increasing Expressive Skills for Verbal Children with Autism; "Written by Susan Stokes under a contract with CESA 7 and funded by a discretionary grant from the Wisconsin Department of Public Instruction." Retrieved from website: http://www.cesa7.org/sped/autism/verbal/verbal11.html
Van Steijn, D., Richards, J., Oerlemans, A., De Ruiter, Saskia, Van Aken, M., Franke, B. Buitelaar, J., Rommelse, N. (2012). The Co-Occurrence of Autism Spectrum Disorder and Attention-deficit/Hyperactivity Disorder Symptoms in parents of children with Autism or ASD with ADHD; Journal of Child Psychology & Psychiatry; Vol. 53:9, p954-963.
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…
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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/
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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 can verbalize say they ‘do care’ they just get so overwhelmed by all the stimuli around them that it’s easier if they withdraw into themselves.
Another thing that a speech therapist does is a series of formal or informal assessments of the child’s ‘receptive & expressive’ language. ‘Receptive’ language is basically recognizing the words they hear. While ‘expressive’ language is being able to say the words they need to express themselves.
12% Even though I knew that Jack could hear someone open a bag of animal crackers from three rooms away, I fostered a tiny seed of foolish hope that maybe, just maybe, he was hearing impaired and that all of this could be solved with a simple crash course in sign language. Nope, not deaf.
13% “Does he ever come to you for comfort when he’s hurt?” that very question, that very moment, crystallized every fear I’d ever had about my beautiful brown-haired, blue-eyed son.
I’ve heard parents of autistic children describe a period of grieving and bereavement immediately after having the diagnosis…
Frankly, I was relieved to have a name for it, to be able to explain why Jack would rather spend the day with the vacuum than with his friends. It was a relief that I wasn’t crazy. Something was amiss with our adorable little boy, and we needed help.
We accepted the diagnosis and forged ahead, getting Jack into as many services as we could. I do think in the back of our minds we both harbored the notion that he would outgrow this, that his symptoms would diminish and he would blossom into a typical child.
14% Jack was very difficult that spring. In his preschool back in Buffalo he’d started biting and kicking both kids and teachers, and everyone seemed at a loss as to how to control his behavior. At home he’d started to hit both Joe and I, and to get into mischief…
< My Thoughts > “…he’d started to hit both Joe and I…”
Frea, et al. (2001), tell us that “…exhibiting extremely challenging behaviors can be improved with some sort of intact communication system which allows the child to express choices and preferences, in all settings.”
15% We had started some rudimentary means of communication by posting pictures of his favorite items around the house so he could point to things he needed, but his language was limited to about ten words.
< My Thoughts > “…rudimentary means of communication…”
Does the child have or understand the “need” to communicate? What is the payoff for the child? Susan Stokes, Autism Consultant (2007), believes that “the child must be able to understand the ‘purpose’ of the communication.”
I’m thinking that in 'rudimentary communication' it would be much like a crying newborn. Why is he crying? What is he communicating? Wet, hungry, uncomfortable, cold, hot, scared, or just a shout out to see if anyone is there.
This is another slippery slope with Sonny. If he doesn’t intuit that he wants something or that he’s on sensory overload… the he just goes into his ‘flight or fight’ response. He overrides his ADHD medication and starts bussing like a bee… stinging whatever or whomever crosses his path.
15% In conjunction with his speech therapist and the integrated preschool, Joe and I were doing our best to figure out our enigmatic little boy.
In July, I gave birth to a little girl. Joe’s (dental) practice was thriving and I was home with another newborn.
16% Nine months later, ten-pound, four ounce Henry bulldozed his way out of my body and into the world – the equivalent of a human meatball.
17% Just as autism varies from person to person over time…as Jack gets older, his autism changes year by year.
I’m reminded of a snowflake, one inside of him, drifting, melting, and then re-crystallizing.
Snowflakes … autistic people are like snowflakes…all similar yet essentially unique.
People will remark about how normal he appears. Then without warning, the snowstorm will begin again.
At three, Jack started to make a lot of progress. Settled in the early education program in New Hampshire, he was making great gains in the areas of speech and language.
And then, nothing…by fall he seemed at a standstill. We moved through this cycle of progress and behavioral problems for the next five years.
< My Thoughts > I call it traveling over the peaks and through valleys… or, ‘Peaks & Valleys’ for short.
18% Over the course of seven years, Jack had changed so much from that initial list of autism symptoms; he was a different boy entirely.
He is extremely affectionate and loving…for example, and can finish my sentences and read nonverbal cues (such as a warning look) from across the room.
< My Thoughts > “…He is extremely affectionate and loving…”
One of the main reasons an older student of mine was ‘disqualified’ for services was because he was sometimes ‘friendly’, and ‘affectionate’, and had a lot of language and conversation. Hello! By the time they become adolescents, they see being friendly as a way to ‘manipulate’ their surroundings. No one has ever said that a child with autism couldn’t be manipulative and crafty! Besides, the language and lengthy conversations are always about the computer games he plays. Eeee Gads it’s called ‘perseverating’!
18% On the flip side, Jack has a tendency to do what’s called perseverating; he focuses repetitively on random subjects, sometimes for months.
…cars, license plates, radios, and even what color of shampoo people use.
In school, he’s prone to huge meltdowns and tantrums. Self stimulation. When Jack ‘stims’, he looks as though he’s possessed, as if someone else has control of his body.
Common self stimulation practices include things like hand-flapping and humming. Jack tends to gallop across the room with his fingers in his mouth and to grunt or loudly clear his throat. We call it his “zoomies.”
19% The doctor recommended neurophysychological testing to get an accurate picture of exactly how Jack thinks and reacts in certain situations.
Much of Jack’s issues, it turns out, are related to sensory integration and his own internal regulation. …he struggles with regulation, cognitive flexibility, working memory and processing, and auditory and visual complexity.
21% Jack’s limited working memory results in significant communication challenges. In his mind words are as slippery as falling snowflakes, and as quickly as he grabs hold of one idea, another one slides out of his cerebral grasp.
When he’s asked a question it’s as though he has to mentally bend down and retrieve that one idea out of many, re-examine it, and figure out if it’s what he needs. It takes him a while to answer.
< My Thoughts > “When he’s asked a question it’s as though he has to mentally bend down and retrieve that one idea out of many, re-examine it, and figure out if it’s what he needs. It takes him a while to answer.” This so perfectly states what I think that many children with autism through. In fact, when hearing the words “developmental delay”… people often think that the child has mental processing issues, or thinking delays. When in fact it means that they are ‘delayed’ in meeting their traditional developmental milestones. Such as… time to respond to mother’s voice, time to turn head to sounds, time to babble… and so forth.
57% Literal boys like Jack, boys who start looking around wildly for giraffes when their mother announces that the Walmart parking lot is a zoo!
21% As a literally thinker… he has trouble with cognitive flexibility and ‘theory of mind’. An aspect of social cognition, ‘theory of mind’ is the ability to understand that others have beliefs, opinions, and feelings different than your own. Jack however, thinks everyone sees and feels and likes the same things he does.
< My Thoughts > “…everyone sees and feels and likes the same things he does.”
‘Theory of Mind’ is thinking that everyone is having the same ‘sensory experience’ that you are.
23% How do you increase a person’s ‘theory of mind’ and help them understand that others think and feel differently?
With the help of our psychologist, we…created a strategy to increase his (Jack’s) ability in each of the identified areas:
- Self-regulation
- Communication
- Cognitive ability
Essentially, we wanted him to learn to stretch himself, like a rubber band but also to have the skills he needed to identify his breaking point before he snapped.
< My Thoughts > “…needed to identify his breaking point before he snapped.”
Another slippery slope… today’s ‘breaking point’ may not be yesterday’s ‘breaking point’. I have noticed with Sonny that what happened several days ago may be festering in his mind and finally, when something happens today… it sets him off it’s because the original situation was never resolved to his satisfaction. Am I making any sense? I’ll try an example… two days ago; he was looking for a Hot Wheels car (I thought). After we looked everywhere… we couldn’t find it. Then today when he couldn’t find a book he was looking for… he went off, i.e. ‘breaking point’. But, finding the book wasn’t enough… because we still couldn’t find the car. If I had known which car it was that he saw in his mind’s eye… I would have gone out and bought him another one. Some nosey person would say I spoil him… I say… define spoil!!!
23% I started to observe his regulation more closely and took note of when his body seemed calm and his mind more open... (…as opposed to his looking and feeling distressed).
Jack adapts to his surroundings and learns best when his body feels ready…
…when the ants of self-stimulation are quiet and his mind is calm.
Exercise and movement are essential for him to feel regulated.
If we notice he has the “zoomies” and needs to stim (Self-stimulation), we direct him towards the mini-trampoline, inside…or to his bike, outside.
Sometimes I just wanted to let him watch those baby Einstein movies he loved so much, to be and let be. And sometimes I did.
< My Thoughts > “Exercise and movement are essential for him to feel regulated.”
Rudy (2011) believes that “People with autism are no different from anyone else when it comes to the relationship between exercise and well-being. The sedentary autistic child becomes a sedentary teen and adult. Without exercise, people with autism are at the same risk as everyone else for issues such as obesity, diabetes and high blood pressure (to name just a few possible outcomes). Unlike many other people, though, folks with autism may not be sedentary out of choice, but rather because they are not encouraged or supported in physical activities that might be right for them.”
23% But for the most part, we were consistent in our efforts to draw him out and pull him towards us.
24% Joe and I have incorporated our psychologist’s concept of “low and slow” into our parenting approach.
I prefer “high and fast” myself. It’s taken a fair amount of practice for me to slow down and lower my voice when I’m agitated. All of us are slowly stretching.
Low and slow means pretty much what it says: keep your voice low and your words slow.
< My Thoughts > “I prefer “high and fast” myself.”
Van Steijn, et al., (2011), suspect that ADHD symptoms are “obtained from the parents and were related to their offspring.” Those parents genetically “influence patterns of inattentiveness and hyperactive-impulsive symptoms in their offspring as well.” Never a point of blame… but, only a point of information. Just saying that one needs to stop the ‘zoomies’ long enough to eat, drink, and learn new skills.
25% I do have to remind the kids to keep it low and slow for Jack, to give him time to listen and respond.
Basically we all have to accept his limitations and give him the space to flex his mind.
We brainstorm about different ways we can spend our afternoon. For example, or if time allows, I’ll sometimes take a different route home so that Jack sees there is more than one path to travel.
65% On January 2011, seven-year-old Jack’s behavior started to change more dramatically. He was afraid of ordinary things.
69% From peeing in the morning to showering at night, every move had become a slow torturous crawl through the muddy waters of his anxiety.
68% Medication seemed like a last resort to us, and Joe and I resolved to explore alternative methods to help Jack cope.
…we couldn’t imagine having him taking anti-anxiety medicine every single day, potentially for the rest of his life.
Instead, for a month, the occupational therapist brushed him at school and Joe and I took turns at home.
(Brushing technique called the Wilbarger Protocol to reduce sensory defensiveness by using a small brush to apply pressure on the limbs and back.)
< My Thoughts > Here is one website with information on the Wilbarger Protocol. http://www.sensory-processing-disorder.com/wilbarger-deep-pressure-protocol.html
68% Each morning I wept as I drove downtown to yoga class, thinking about how scared I was that Jack would never get better. These long three months took a toll on our family. As a mother I have never felt so fragile.
81% During my first Bikram (yoga) class I felt as though I’d alighted in a foreign land… I didn’t have the right clothes, I couldn’t understand the language, and my body felt too large and clunky for the graceful poses.
That first class gave me a valuable glimpse into what Jack faces every day as he navigates through our world, a world with rules and regulations blurred by autism.
I imagine that in his world the commands are as confusing to him as the instructions for Awkward Pose (in yoga) first were to me.
82% My instructor often reminds me – “focused gaze,” during class, a technique used to develop concentration. …I’m uncomfortable having someone repeatedly encouraging me to “Make eye contact.”
This phase of course is not new to me. Ever since Jack was a year old we’ve been urging (and sometimes commanding) him to make eye contact with us. A “focused gaze”.
< My Thoughts > “…focused gaze”.
Retrieved from – https://bikramyogachaddsford.com/
“FOCUS YOUR EYES one point. DON’T EVEN BLINK. The time and effort that you devote to yoga teaches you to move your eyes systematically, so that you focus on what matters most to YOU. A focused gaze creates concentration and safety. It’s MIND BLOWING!”
83% Because with life, with yoga, and especially with Jack, all I need to do is believe, breathe, and stay in the room.
< My Thoughts > It’s tai chi for me. The improvement in mind and body is so subtle but effective. I haven’t learned it well enough yet to practice on my own, but I do so enjoy going to a class.
68% I was scared that Jack would never get better, that I would never again see the happy little boy who had disappeared underneath this layer of distress.
< My Thoughts > “…the happy little boy who had disappeared underneath this layer of distress.”
There are those out there who bristle, even publically rebel against parents who rush in to ‘save’ their child from the jaws of autism. But, as a parent and teacher, how does one stand by and let the jaws of autism swallow-up a child?
When we first had Sonny all to ourselves, and me being a ‘health nut’ since adolescence, I tried taking him off of all meds. What a mistake! The chaos that followed tore at my heart. The level of Sonny’s anxiety and distress was so high that he basically spent the day running around the house banging his head, screaming, and biting himself and the furniture.
Finally we found a doctor who was able to examine the meds, find the ones with the least side-effects and slowly bring back some quality of life for him. His appetite returned, but not before he became dehydrated and his weight dangerously low. This is always such a scary process, which we have put him through several times, when adjusting meds and introducing seizure medications that conflicted with current meds.
69% We hit rock bottom one chilly night at the end of March. On the car ride home from (a draining experience at the restaurant, we decided to fill the (doctor’s prescription).
It took just a few days to build up in his system, and by the end of the week Jack began the ascent out of his pit of despair. He returned to us.
70% Once opposed to daily medication, now every night before bed we holler out, “Jack! You need your PILL!”
< My Thoughts > “Jack! You need your PILL!”
Sonny even has a button on his Assistive Technology devise that he can push when he feels the need.
70% Jack smiles every day now. And that is something I will never get too used to.
85% (Our family) – All in all, we’re a quirky group. I guess the question is where does quirky end and autism begin? Is the whole world autistic?
I decided there’s something else standing between the rest of us and a diagnosis: TOLERANCE.
86% Joey, Charlie, Rose and Henry are not diagnosed with autism, but they do have challenges that we need to understand and solve. (We) stretch ourselves in areas that we normally find uncomfortable.
As parents (our) job is to give four boys and one girl the skills they need to cope with the challenges they face…whether it be anxiety or sensory processing or the wiggles.
38% Every year I write each of my children a letter on their birthday and keep it in a small journal.
< My Thoughts > Every year I write each of my children a letter on their birthday and keep it in a small journal.
What a wonderful idea that she documents their life in such a way. Her children must treasure those letters.
89% …in the past six years, I’ve learned there is no “fixing” when it comes to Jack and his autism. Rather, we need to fix ourselves so that we can better understand and appreciate him.
94% Sometimes I just have to step back and let the magic unfold on its own, to give Jack a chance to experience the world without my interpretation.
95% And one of the most interesting lessons I’ve learned from Jack? Monday is blue.
< End of excerpts from Carrie’s book >
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References used in < My Thoughts > are:
Frea, W., Arnold, C., Vittimberga, G., Koegel, R. (2001). A Demonstration of the Effects of Augmentative Communication on the Extreme Aggressive Behavior of a Child With Autism Within an Integrated Preschool Setting; Journal of Positive Behavior Interventions; Vol.3:4, p194.
Gholipour, B., (2013). People with Autism More Likely to Hear Colors, See Sounds; Live Science Magazine. Retrieved from – http://www.livescience.com/41352-autism-mixes-up-senses-synesthesia.html
Rossetti, Z., Ashby, C., Arndt, K., Chadwick, M. & Kasahara, M. (2008). “I Like Others to Not Try to Fix Me”: Agency, Independence, & Autism; American Association on Intellectual & Developmental Disabilities,Vol.46:5; 364-375.
Rudy, L. J. (2011). Why Autism and Physical Activity Should Go Together. Retrieved from:
http://www.autismafter16.com/article/12-09-2011/winning-match-fitness-and-autism
Steedman, W. (2016) tells us in “8 Steps to a Successful IEP”. Retrieved from: http://www.greatschools.org/gk/articles/iep-for-autism/
Susan Stokes, Autism Consultant (2007), Increasing Expressive Skills for Verbal Children with Autism; "Written by Susan Stokes under a contract with CESA 7 and funded by a discretionary grant from the Wisconsin Department of Public Instruction." Retrieved from website: http://www.cesa7.org/sped/autism/verbal/verbal11.html
Van Steijn, D., Richards, J., Oerlemans, A., De Ruiter, Saskia, Van Aken, M., Franke, B. Buitelaar, J., Rommelse, N. (2012). The Co-Occurrence of Autism Spectrum Disorder and Attention-deficit/Hyperactivity Disorder Symptoms in parents of children with Autism or ASD with ADHD; Journal of Child Psychology & Psychiatry; Vol. 53:9, p954-963.
