After an exhausting week of work, household duties, and family activities, most of us are ready to relax when the weekend rolls around.
That’s normally when we reach for a great movie, a bowl of popcorn, and maybe even a glass of wine.
While many people have stopped renting movies and prefer to just watch television shows and films on digital streaming services, these options often don’t have the newest releases. Although you can rent movies online through platforms like Amazon and iTunes, many people don’t have televisions that support these sites.
That is why services like Redbox still exist, as they’re a fast way to get a movie while running errands. Redbox machines are usually located in convenient places, and they always offer the newest movies.
One mom recently decided to stop by a Redbox to pick up a movie on her way home.
When she got home and opened the DVD case, she noticed that there was something besides the movie inside it.
It was a note, along with $100 in cash. She was shocked — she never expected to find something like this in a random DVD case.
The note said: “Hello! My name is Marcos. Every month I take $100.00 that I’d normally spend on myself and give it away to a stranger. This month I decided to change it up and put it in a Redbox DVD. You are the first giveaway of 2017! I just ask that you put the money to good use. If you don’t need it, give it away. If you need it, keep it. Have a great day! —Marcos.”
After reading this note, I’m thinking about taking a page out of Marcos’ book. Giving money to strangers is an amazing way to show your generosity.
If we were all a little more like Marcos, the world would be a better place. Please SHARE this story with people you think would appreciate it!
I don’t know your background. I don’t know why you chose this profession. I don’t know where your inner strength comes from or what keeps you going. I don’t know if you will keep doing this or if you will move on to other jobs. I don’t know how much of your day you take home with you at night.
This blog is from Mandy Farmer who writes a blog called From The Bowels of Motherhood where she writes about raising her three children, one who has autism, and her military family life
But this is what I do know:
I know you care for our children as if they were your own. I know you celebrate every single little success they have, because you know just how hard and long they had to work to achieve it. I know you watch them develop and your hopes for them go far beyond your classroom.
I know you hear the same news stories I do. I know you cringe when you hear of a teacher who hurt a nonverbal child. I know your heart aches that you have to work so hard to earn parents’ trust and you wish they knew that for every one abusive teacher of special needs children there are a hundred more that would do anything and everything to protect our children. And because you are that teacher who would do anything to protect these kids, you have no problem earning our children’s trust and earning our trust.
I know you have hard days. I know you juggle the needs of many children at once and have to work constantly to maintain the peace in the classroom. I know you stay up late working on things for the next day and stay at work late to make sure your classroom is “just so” for tomorrow. I know you have to work harder than your fellow teachers who teach typical children to think ahead for the day and to try to see and prevent potential triggers and obstacles that might make our children’s days that much harder. I know the hard days have been physical, but you press on, you don’t lose your cool and you hope tomorrow will be better.
I know you probably have days when you wonder if all of your patience and heart and perseverance are noticed. I know you might have days when you want to throw in the towel and move on to something easier.
I hope you know that I see your passion for these children. I see the excitement in your eyes when mine does something new or overcomes something that once would have set him back. I see how hard you work to ensure he has successful days. I see you on the hard days and I know when he comes home upset, you may have endured a day of screaming and crying. And I know you did everything in your power to calm him.
Know that you have given me a break when I needed it the most. Know that you have given peace of mind about one aspect of our day to a parent who has to worry about so many other things. Know that your love and acceptance of my child is a welcome change from the rejection and isolation we so often face. Know that every success our children will go on to have is the result of a foundation you helped lay. Know that every struggle and every accomplishment in your classroom are stepping stones to a future they couldn’t have had without you.
I know you wonder if you make a difference. Know that you do.
Some children are highly sensitive to sound, sight or touch, whereas others seem almost numb. Exploring the differences may offer insights into autism.
Jack Craven has superpowers. When his mother, Lori, misplaces an item in the house, she asks the 12-year-old to “look in your head,” through the rich catalog of visual information he seems to assemble without effort. Jack always finds the lost object. His astonishing memory for faces enables him to pick out someone he’s seen only once or twice before from a sea of strangers in a crowded school gymnasium. His sharp hearing makes him an excellent vocal mimic. Request that he sing a Beatles tune and he’ll ask if you want it sung in the style of Lennon or McCartney.
But great powers, as any superhero narrative goes, come with great challenges. He endures, rather than enjoys, the arcade birthday parties popular among tween boys in suburban Atlanta where he lives. They’re just too noisy, too busy, too overstimulating. Jack’s hearing is so sensitive that he can’t always eat at the table with his family, because the sound and sight of them chewing might make him throw up. As an infant, he never slept for more than four hours at a stretch, and had to be held upright the whole time, his stomach pressed against his mother’s chest and her palm pressed atop his head.
Jack has sensory processing disorder (SPD), a condition that includes people who are overly sensitive to what they feel and see and hear, but also those who are undersensitive, and still others who have trouble integrating information from multiple senses at once. SPD is not an official diagnosis. It isn’t included in the newest edition of the “Diagnostic and Statistical Manual of Mental Disorders” (DSM-5). Still, it is widely used as a catch-all by clinicians, and some studies suggest that it may affect between 5 and 15 percent of school-age children. Children with the clinical label SPD also have a lot in common with children diagnosed with autism, up to 90 percent of whom also have sensory difficulties.
Jack doesn’t have autism, but Ari Young, who lives a few hundred miles away in North Carolina, has both SPD and autism. And Ari, too, has certain impressive abilities, thanks to his super-sensitive senses. His acute visual memory allows him to recite articles from Wikipedia nearly verbatim — although, unless the article is on a history- or science-related topic he’s particularly interested in, he may be able to recall the information only in the order in which he learned it. Ari’s mother, Heather McDanel, says his sensory peculiarities and his autism are all bound up together. With many of his idiosyncrasies, “I don’t know if that’s the autism or if that’s sensory, or a combination of the two,” she says.
Like Jack, Ari also had sleep-related quirks as an infant: He could drift off only while rocking in a baby swing to a recording of birds chirping, and his bleary parents had to restart it every 15 minutes throughout the night. A speech therapist first mentioned SPD when Ari was not yet 2 years old; the autism diagnosis came later, when he was 2 and a half.
Even today, at age 9, Ari tends to hum to himself either when it’s too quiet or to drown out noise. He attends third grade in a mainstream classroom, but his sensitivities sometimes make school a struggle. A few months ago, when an unexpected announcement that class would be dismissed early caused his fellow students to erupt into happy chaos, the hubbub sent Ari running, sobbing with confusion and surprise, to the front office.
Sensory problems can not only disrupt a child’s ability to learn in school and form friendships, but upend the lives of whole families. “These are really challenging kinds of problems for children, whether they’re diagnosed with something or not,” says Grace Baranek, professor of occupational science and occupational therapy at the University of North Carolina at Chapel Hill. And for families, it can be difficult to get help.
Yet SPD also offers an opportunity: Studying people who have sensory problems with or without an autism diagnosis could help these children and provide insight into the relationship between sensory problems and the core social and communication problems seen in autism. It’s easy to imagine that a young child who hardly registers the sights and sounds of the surrounding world may not tune in to her father’s games of peekaboo, and may miss out on these formative moments of communication. Meanwhile, a child for whom those sights and sounds are unusually intense may be too overwhelmed to focus on his mother’s attempts to catch his attention and never learn some of the subtleties of the social world.
In the past several years, the advent of more precise, objective ways to measure sensory responses and behavior, coupled with imaging techniques that pinpoint how the brain processes sensations, are providing a window into how this process goes awry — and perhaps, ultimately, how to get it back on track.
Sensory differences were part of the first descriptions of autism, but were ignored for many years. Leo Kanner’s 1943 paper first introducing the concept of autism opens with an account of one boy’s precocious singing skills, remarkable memory for faces, and aversion to ordinary childhood pleasures such as riding a tricycle or sliding down a slide. Kanner and other researchers also noticed that many children with autism were hypersensitive to loud noises or seemed indifferent to pain.
But in the early decades, research on these aspects of autism was mostly descriptive and speculative. Few researchers were gathering empirical evidence about how children with the condition experienced the world. By the 1980s, interest in this area had fizzled.
Meanwhile, outside the context of autism research, an occupational therapist and neuroscientist named A. Jean Ayres was developing the theory that processing and integrating basic sensory information underlies many daily living skills. “It’s hard to imagine now, but people didn’t understand that when a child was having some difficulty moving their hands to button their coat, or to do some kind of school activity, that this could be related to brain function,” says Roseann Schaaf, professor of occupational therapy and neuroscience at Thomas Jefferson University in Philadelphia, Pennsylvania.
In the early 1970s, Ayres first described ‘sensory integration dysfunction,’ in reference to these difficulties with everyday activities. As researchers learned more about the brain mechanisms involved, the term ‘processing’ replaced ‘integration’ and the condition became known as SPD. Ayres developed tests for identifying these troubles, such as asking a person to identify which finger has been touched without looking. She also created sensory integration therapy, which involves activities that engage multiple senses simultaneously, such as finding objects hidden in sand or a bin of beans, or sitting on a swing while batting at a suspended ball.
Ayres’ work became enormously influential among occupational therapists — healthcare professionals who help people with everyday life skills. These days, occupational therapists are primed to consider sensory explanations for a child’s difficulties with, say, handwriting or teeth-brushing. And many occupational therapists still use Ayres’ therapy or something similar to help with these problems.
By the early 2000s, autism researchers began to rediscover sensory processing, thanks to new tools in brain imaging and psychophysics, the precise measurement of the brain’s electrical responses to stimuli. There has also been a growing appreciation that sensory difficulties are a big part of what makes autism so difficult to cope with. Today, they’re such a widely recognized aspect of autism that they are included in the diagnostic criteria for the condition.
Still, many child psychiatrists do not see SPD as a distinct diagnostic label. They say the symptoms are too diverse and there’s too much uncertainty about what SPD is and how to distinguish it from other conditions such as autism, attention deficit hyperactivity disorder (ADHD) or anxiety. “We know that sensory issues are important in a variety of kids with a variety of different diagnostic labels,” says Carissa Cascio, assistant professor of psychiatry at Vanderbilt University in Nashville, Tennessee. Those who have sensory problems without any of the other conditions are rare, she says.
But some parents say this doesn’t jibe with their experience, and that their children’s problems are fundamentally perceptual in nature. Linda, the mother of a child with SPD, recalls that her daughter had always been very particular, almost obsessive, about what clothes she would wear. But these quirks morphed into a full-blown terror of going to school once she entered first grade; she worried about having to go to an assembly, or having to use the bathroom with its loud, unpredictably flushing toilets. (Linda asked that we withhold her last name to protect her daughter’s privacy.) A pediatrician gave an anxiety screening questionnaire to see if Linda’s daughter might qualify for that diagnosis, but initially the label just didn’t seem to fit, Linda says. “She’s not afraid of bears or afraid of dying,” Linda told the pediatrician. “She’s afraid of socks; she’s afraid of hats.”
In fact, a 2012 twin study found that just over half of children with sensory sensitivities do not qualify for diagnoses such as anxiety, depression or ADHD (the study did not consider autism).
Meanwhile, the million-dollar question remains: What’s the difference between children who have autism and the perceptual processing problems that usually accompany it, and those who have the problems alone? Why does Ari have an accepted condition — autism — that includes being easily overwhelmed by noise, whereas Jack has similar struggles but no such diagnosis? Looking carefully at the differences between children like them may help answer these questions. “An approach like that is incredibly useful because it can give us a compare-and-contrast view of what’s specific to autism and what’s more general to sensory differences in a broader sense,” Cascio says.
How it feels:
The controversy over SPD has created a conundrum in pursuing that research, however. “It’s very hard to get funding for research on something that doesn’t exist,” says Lucy Miller, an occupational therapist and founder of the SPD Foundation, a nonprofit research and advocacy organization. And, of course, it’s difficult to establish whether SPD should be considered a stand-alone condition without studying people who have it. “These are kids that aren’t necessarily being referred to studies because they don’t have a disorder” as defined by diagnostic manuals, says Elysa Marco, director of the Sensory Neurodevelopment and Autism Program at the University of California, San Francisco. “It’s sort of a round robin.” Her group is running a crowdfunding campaign to support their SPD research.
A handful of researchers have been able to investigate SPD as a separate entity, and their findings are advancing the argument that it deserves its own diagnosis. Some children who don’t fit any recognized condition nonetheless have atypical sensory systems, these studies find. Researchers in one study used electrodes placed on the skin to show that children who have this informal clinical label react more strongly to everyday stimuli, such as the sound of a siren or the stroke of a feather across the face, than do either controls or children with ADHD. Another study showed that the parasympathetic nervous system, which slows the heart rate and breathing, is less active in people with sensory processing problems than it is in controls.
The most compelling evidence that SPD has a distinct neurological basis comes from a 2013 study that found that boys with SPD have atypical white matter (long nerve fibers) connecting regions related to sensory processing. “They have real, measurable brain connectivity differences,” says Marco, who worked on the study. A follow-up study published earlier this year adds to the picture: Brain connections are altered in girls with SPD as well, and the more severe a child’s difficulties with processing sound, the more pronounced his or her white-matter alterations.
These studies also show some intriguing parallels between children with autism and those with sensory difficulties but no formal diagnosis. For example, children with autism show dampened parasympathetic nervous system activity similar to that seen in children who’ve been described as having SPD. And children with autism, just like those with SPD, have abnormalities in white-matter pathways involved in processing sensations.
“It’s a possibility that these groups started out very similarly and there’s some sort of protective factor that keeps people with sensory processing differences from becoming kids with autism,” Cascio says. But so far, that’s just speculation.
There are also differences between sensory problems in autism, SPD and other conditions, and these are only beginning to be mapped out. Children with autism have disruptions in brain connectivity along social and emotional pathways, whereas those pathways are intact in children with SPD alone. Children with SPD tend to have more problems with touch than do those with autism, whereas children with autism struggle more with sound processing. This may explain why language and communication problems are characteristic of autism.
Whether a child is oversensitive or undersensitive may also play some role in what diagnosis she winds up with. Dampened responses to a new sight, sound or touch are more common in autism than they are in children with SPD or other conditions, whereas a sensory system that is dialed all the way up is seen across autism, ADHD and anxiety alike. As toddlers, children with autism also tend to have more profound sensory abnormalities than do those with developmental delays.
The notion that sensory problems underlie autism symptoms makes sense, but has yet to be tested, says Sophie Molholm, associate professor of pediatrics and neuroscience at Albert Einstein College of Medicine in New York. “I wouldn’t even want to say that the sensory processing issues are causal,” she says. “We don’t know that at all. We just know that these are symptoms that we frequently see in these disorders.”
It could also be that how perceptual problems relate to autism depends on the child. “I think this is part of the conundrum of autism,” Marco says. “Are kids simply not showing [social] awareness and interest … because they are so sensitive that they have shut it out completely? Or are they really, truly at their base just not interested?”
“These are really challenging kinds of problems for children, whether they’re diagnosed with something or not.” Grace Baranek
Sense and sensitivity:
These questions matter because children who are chronically flooded with sensations, or are distant from the world around them, need help — whether they have autism or not.
Many of the day-to-day struggles of people with autism have to do with perceptions gone haywire, such as being overcome by sounds, or feeling a revulsion toward certain foods. This home truth may often go unnoticed and unaddressed by clinicians, but it has a powerful impact on family life.
Some parents of children with autism are big fans of sensory integration and similar therapies. They say the interventions help soothe the most disruptive problems of everyday life. Jennifer, the mother of a teenage boy with autism and fragile X syndrome, a related condition, says the occupational therapy her son began around age 3 was transformative. He was nonverbal at the time, and thanks to this therapy, she finally understood that her son’s senses were wired in a way to make some things soothing and others bothersome to him. “We realized that’s why he likes his hands rubbed so much, and his arms squeezed,” says Jennifer. (She asked that her last name be withheld to protect her son’s privacy.) It helped her grasp why her son demanded tight pajamas, and would only wear one particular pair of shoes. “It started making sense to us,” she says — and made it easier for her to meet his needs.
Until a few years ago, the evidence supporting sensory integration therapy for children with autism or other conditions was relatively thin. And some practices of therapies that focus on sensation, such as working with playdough, hanging upside-down, or brushing a child’s skin to desensitize him to touch, can seem unscientific or even downright bizarre. The approach is also difficult to study because it tends to be ad-hoc. Clinicians “come up with treatment plans that are highly individualized, and that’s another challenge for really rigorous scientific study,” says Cascio. “It becomes really difficult figuring out what the relevant outcomes are, how are you going to measure them, how you measure improvement.” And in the past, the field was generally more focused on therapeutic practice than on creating standardized interventions.
Some families of children who lack an official diagnostic label struggle to get any help at all. “There are a lot of people who suffer from this kind of difficulty, and they’re not able to access services or get the kinds of accommodations they need in schools, or early intervention, without the diagnostic label,” says Baranek.
Lori Craven is homeschooling her son Jack because she says it was too difficult to get the public school system to accommodate him. Because Jack doesn’t have hearing loss, he wasn’t eligible for an assistive technology that amplifies his teacher’s voice to help him focus. Because he doesn’t have vision impairments, the school balked at providing enlarged, simple-looking versions of worksheets, or even allowing Lori to prepare them. “I just realized I was spending so much time fighting the school — I was trying to do it for them, and it was too much to ask,” Lori says.
Savvy parents of children with SPD often seek out an additional diagnosis such as anxiety or ADHD — or embrace one when it is offered. Linda says that in the end, it was her daughter’s anxiety label that helped the family arrange an individualized education plan for her daughter. The anxiety diagnosis “seemed to be the language that the school understood best,” she says.
This fancy footwork around labels and diagnoses may become a thing of the past as researchers pursue the ultimate goal: figuring out which treatments for sensory problems are effective. They hypothesize that the right treatments will work whether a child has autism, anxiety, ADHD or no diagnosis at all, as long as the underlying problem, such as being too sensitive to touch, is the same. “You’re trying to establish what the commonalities are,” Baranek says. “And looking to see if those interventions actually help in similar ways despite the different diagnoses.”
That means tailoring the treatment to the child rather than to the diagnosis. “I think [occupational] therapists do this on the fly,” says Alison Lane, associate professor of occupational therapy at the University of Newcastle in Australia. “But we don’t have a systematic way of saying, ‘This child with this particular pattern of behavior and sensory features will respond best to this type of approach.’”
Lane and others have begun defining sensory subtypes within the autism spectrum, in an effort to more systematically match symptoms to treatment. She plans to use this framework to guide therapy in a pilot study later this year.
A precisely defined procedure for choosing sensory therapies in autism will also help make studies in this area more rigorous, says Schaaf, the Philadelphia-based occupational therapist and neuroscientist who led the development of such an approach. She is using it to test whether sensory therapy or a more standard autism treatment is better at boosting the ability of people with autism to integrate auditory and visual information.
A small pilot study of this approach found that sensory therapy in children with autism improves not only their perceptual difficulties but also their social skills. “That was unexpected,” says Schaaf. “We didn’t hypothesize that at all.” In their follow-up, the researchers are collaborating with Molholm’s team to track the children’s sensory integration abilities through electroencephalography to observe brain activity, as well as monitoring how they are doing in daily life. The study, slated to run for five years and involve 200 children, began enrolling participants in February.
Researchers are also applying neurobiology findings to treatment studies of SPD. Marco is collaborating with the SPD Foundation on a pilot study to scan the brains of children with SPD before and after occupational therapy, in order to determine whether the intervention improves brain connectivity.
In the meantime, Ari Young has come up with his own way of managing his highly attuned brain, on top of the therapies he gets for autism. He often wears headphones at school to block out distracting or distressing noises, but he has noticed that most other kids don’t wear them. “I used to feel like wearing headphones would just kind of pin me out of the rest of the group, make me look like I was not paying attention,” he says. They also make it more difficult for him to hear what his teacher is saying.
So Ari has been conducting a sort of informal sensory therapy, challenging himself to briefly take his headphones off during events such as school assemblies and performances. “Sometimes there are quiet moments at loud concerts, when … I decide to peek open the headphones a little bit,” he says. “And then when the next loud part comes, I snap them back on as fast as I can.”
Scientists are investigating whether a cartoon-like robot can improve learning and emotional understanding in children with autism.
A team from Imperial College London and their partners in Europe have developed technology that enables an off-the-shelf robot called Zeno to interact in real-time with children who have autism. The researchers, who are currently trialling the technology in Serbia and the UK, believe that robots may provide an alternative approach for teaching children how to understand and convey their emotions.
It is amazing to see our technology bringing Zeno to life for children with autism. They absolutely love the robot.
Autism spectrum disorder (ASD) is a condition that affects social interaction, communication, interests and behaviour. It’s estimated that about one in every 100 people in the UK has ASD. More boys are diagnosed with the condition than girls. Specialist teaching and therapy for children with autism focuses on helping them to learn to convey their emotions and understand other people’s emotions. This is done by getting them to understand the conventional ways that people express themselves through a combination of facial expression and gestures.
However, trying to read a combination of facial expressions and gestures can be confusing for the children and means they often prefer to avoid eye contact and contact in general. This has led scientists to wonder whether there are alternative methods for teaching children with autism, which are more aligned with the way they process information and see the world.
Now, the researchers on the four-year DeEnigma project are exploring whether robots can provide a consistent and fun way for children with autism to learn more about emotions. Robots, because of their programming, are precise, displaying the same facial expressions and gestures in every interaction. Researchers believe this consistency may be the key to helping young children with autism to learn the different facial expressions gestures people use to display their emotions. The robot also appeals to the way children with autism prefer things that are predictable.
Professor Maja Pantic, Imperial’s project lead from the Department of Computing, said: “Autism affects people in different ways. However, many struggle with understanding and conveying emotions, often preferring to shut out what they don’t understand. It is important to help them to understand how people convey their emotions so that they don’t find human interactions so confusing and that is why we think our project is so important.”
‘Zeno says’: About the game
The DeEnigma project, which began in 2016, is a collaboration between five European universities including Imperial, plus autism charities and industrial partners.
The researchers have combined a range of audio, visual, facial recognition and artificial intelligence technologies, which they have been developing over the years, into one platform. The platform was then programmed to be able to detect and decipher sound and visual cues from the children they are interacting with.
When the platform is connected to Zeno, it enables it to spontaneously interact in real-time with a child and conduct a simple lesson.
Professor Pantic added: “It is amazing to see our technology bringing Zeno to life for children with autism. They absolutely love the robot. Their faces really light up when they see it. For example, we’ve had feedback from a parent who said their non-verbal child of six spoke for the first time in excited anticipation about his next lesson with Zeno, which is amazing to hear.”
The lesson involves a child playing with the robot in a game called ‘Zeno says’. The first part of the game involves Zeno asking the child to describe what they see in a set of pictures, such as images of people being happy or angry.
The child must explain what the faces in the picture mean and how he or she would display those emotions. Zeno responds by showing the correct expressions to the child and adding useful comments. Lastly, Zeno tells a simple story that involves a friend accidentally stepping on its favourite toy and breaking it. Zeno asks the child to explain how the friend felt in that situation.
The first research of its kind
This interaction between autistic children and a robot, where the robot can ‘see’ and ‘hear’ the child and recognise their expressions, is the first research of its kind, says Professor Pantic. A previous study had programmed a robot to deliver a monologue to children with autism as a method of teaching them about feelings, but the technology did not allow for there to be any spontaneous sensor-based interaction, making it less realistic. The DeEnigma team believe spontaneous interactions may make learning exciting, fun and easier for children with autism.
The ultimate aim of the project is to roll Zeno-like robots out to specialist schools to help teach children with autism. The DeEnigma team also have ethical approval for sharing the data they collect with other research groups in Europe. The team say this should mean faster progress can be made to understand more about the condition in children and how it affects their development.
Professor Pantic adds that sharing information across Europe gives the project a unique edge. She predicts that it will have a long-lasting impact in research on autism.
How do you know he loves you? Does he say those three little words?
He doesn’t use his words, but he tells me he loves me, a hundred times a day, in a hundred different ways. He tells me with his eyes, when he wakes up and I’m the first person he sees. He smiles the faintest of smiles, with his puffy morning-eyed slumber and I know I’m the luckiest person in the world. I sneak in a snuggle and breathe in the smell of life from the top of his head, and I wish I could cancel the world and stay in bed with him all day.
He pulls me over to the swing, and gestures to help me place him on the seat. I push and push and push, until my arms want to fall off, his entire body at peace. I push him on the swing 100 times in a row. And then one more push after I swore I was done. His happiness, his calm, his squeals of delight- is nothing but a big huge, I love you.
He tells me I love you with his unstoppable strength, when he doesn’t want to work and he is so sick of another session or appointment or therapy. He aches to play outside and be alone. He screams and cries and looks to me to rescue him. I don’t, I tell him, you can do this and I am so proud of you, even though sometimes I really just want to grab him and run away. He tells me that he loves me when he calms down, stops crying and starts to do what is asked of him. His face says, I don’t want to do this today, but I trust that you know what’s right for me momma.
When he falls down and gets hurt, he rushes right over to me, and it makes me feel like I just won a prize. He cries while I hold him, and whisper- it will be okay. He lets me hold him tight while we rock back and forth until his shuddering stops. His arms around my neck, his ability to find his calm in me, tell me without a doubt that he loves me with all his heart.
He tells me that he loves me with the relief in his eyes, when I am able to figure out exactly what he is looking for, or what he wants, or needs- even if he is not able to say the words. I know when he is hungry or sad or frustrated. I know when he is hot or cold or excited, all by just a look. I know he is anxious when he can’t stop humming, ticking and moving and he is covering his ears. I know he is happy when he jumps up and down and flaps his hands and makes high-pitched noises. I’ve intently studied all of his non-verbal cues over the years and sometimes I think I know him better than I would if he could speak.
He tells me that he loves me, when out of the blue, for the first time in months he tenderly grabs either side of my face with his sweet little hands, he places his warm soft forehead against mine and looks so deeply into my eyes that it steals my breath. I know you are in there, baby, I whisper with tears threatening to jump out. I will never give up on you. I love you too.
So no, he doesn’t speak the three little words, “I love you”, but he tells me all the time. He loves me, and I’ve never been so sure of anything in my life.
It seems strange writing about Autism Spectrum Disorder because I often avoid engaging in conversations regarding the topic.
I do not hesitate to discuss any topic that is near and dear to me, except autism.
Why would this be for an outspoken woman who is passionate about issues that affect children? I do not discuss the topic because it causes my 19-year-old son great pain and discomfort when I do, because he does not want anyone to know he has a diagnosis of autism.
My firstborn son was diagnosed with Autism Spectrum Disorder at 16 years old. He was born 5½ weeks early, but he was always well above his developmental age cognitively. When he was 2 years old, he was reciting states and capitals and doing addition problems.
Our pediatrician in New York told us that his head was unusually large, but because he was so precocious, there was nothing to be concerned with.
We love autistic children – until they grow up
When he was about 3 years old, I had to take him to the doctor because he was sick with a respiratory infection. Unfortunately, his normal pediatrician since birth was not in the office and we were set up to see another doctor.
I took my son in for a common cold and left with a diagnosis of possible hydrocephalus with an MRI scheduled for the next day.
At almost 3, my son still had a soft spot the size of a quarter; however, there was never a concern because he was always considered “precocious” by his regular pediatrician.
Signs of autism begin to emerge
I did not sleep or take my eyes off of my son until the results of the MRI came back.
The MRI found no abnormalities. My husband and I were angry at the doctor for scaring our family, and yet we were relieved that our baby was healthy.
As my son progressed intellectually, he also developed quirky habits and characteristics that were noted by many, including his regular pediatrician.
We could not dress him in anything with tags because he could not function with the feeling of the tags rubbing against his skin.
He was obsessed with trains, especially Thomas the Tank Engine. As a 3-year-old, he memorized every train name, and he could not go to sleep unless they were all lined up a specific way on his train table.
By the age of 5, he did not like anyone to really touch him except for me and would do whatever he could to politely move away from family members who would try to caress or hug him.
Breaking ground: Work begins on First Place complex in Phoenix for adults with autism
He wasn’t the type of child who would throw a tantrum, you could just look at him and see the pain in his eyes and his discomfort was palpable.
We were lucky he was such an angel, knowing what we know now about autism; however, it was because he was a well-behaved and brilliant little boy that he went without a proper diagnosis for so long.
Year after year, we would have his pediatricians tell us that he the characteristics of Asperger syndrome.
We were also told that until it had an impact on his functioning that he would not likely be diagnosed.
Of course, the first thing I did was read every research article, every book and anything I could get my hands on, trying to figure out what I could have done differently — and even more importantly, how could I work with him to help him have the most normal life he could have.
I knew he would be fine intellectually, but the older he got, the more I could see how he would be labeled if we did not intervene to help him appear “normal” socially.
Searching for a reason
In my years of looking for a solution and “why” my son was the way he was, I found that many parents have that same need.
As humans, we need a reason, or an answer, and something to blame when things do not go the way we feel they should.
Wings for Autism at Sky Harbor Airport gives practice to would-be fliers from Phoenix area
I have read articles and blogs and watched talk-show interviews of people blaming vaccines and other environmental factors.
However, I could never find any conclusive empirical data or studies to support these claims.
What I did find in my research was a significant increase in Autism Spectrum Disorder and a continuous decrease in other mental disorders such as mild mental retardation or intellectual disabilities.
Until 1973 when the DSM changed the IQ cut-off point for intellectual disability, the DSM IQ cut-off point was 85.
The decrease in the cut-off point changed the diagnosis for a very large number of individuals.
The cut-off point changed because it was found that people with low IQ, but high adaptive functioning, could hold jobs and live a regular and successful life if they were able to go undetected during their school years.
Compulsory education and the change in academic expectations for all students had a significant impact on diagnosing intellectual disabilities, because even those with lower IQs would no longer be diagnosed as intellectually disabled.
If a person is no longer able to be considered intellectually disabled, but still cannot function socially because their adaptive functioning is low, then the next step is to seek another diagnosis to explain what would once have been considered “idiots, morons, and feeble-minded.”
This is where I believe caused the significant increase in the number of children diagnosed with Autism Spectrum Disorder, a disorder that went “officially” undiagnosed in my son until he was 16.
That year, he had an emotional breakdown because his adaptive functioning was a struggle every day of his life as he got older, and it was more apparent that he was “quirky” compared with other kids his age.
My son had to be placed under observation because he spoke of feeling hopeless and useless because he did not fit in. He looked like a jock but his mind was always thinking about chemistry and physics.
My son was ridiculed, almost daily, by people calling him “retard,” yet he was in Calculus III as a senior at the age of 17.
We worked with multiple doctors, including a psychologist who specialized in Autism Spectrum Disorder, when a psychiatrist diagnosed him as having Autism Spectrum Disorder, because his lack of adaptive functioning was impeding his ability to connect and relate to his peers and triggered depression and anxiety.
A diagnosis and a new perspective
As a parent, I wanted an answer for why my child had to deal with the struggles of autism. What I do know from all of my research is that autism can be linked to genetics.
Of course, no parent wants to think that their genes may have contributed a child having challenges in life. But placing blame on other factors that have no proven direct link, such as vaccines or other environmental factors, can cause harm to many children and adults.
In hindsight, the fear of a life-threatening diagnosis, such as hydrocephalus, may have been what helped to keep our perspective positive before and after the diagnosis of autism.
In the whole scheme of life, we are fortunate that today our son, who is 19 and in his second year of chemical engineering, is able to have a more specific diagnosis of Autism Spectrum Disorder rather than be labeled intellectually disabled because of his social difficulties and quirkiness.
The estrangement of Jewish youth from the Jewish community is an issue of concern for all of us. While we differ in how that sense of belonging should be expressed, we all want our children to self-identify as members of that unique society of mutual responsibility and reliance that is the Jewish people.
For some of our children, the weakening of the Jewish bond is a consequence of our integration into a modern, open, pluralistic society. While this is true to some extent, it is far from the whole story. As much as there is “pull” from society, there is “push” as well.
Our communities, schools, synagogues, and programs are — effectively — designed to push a significant portion of our children away from the Jewish community. In our self-ascribed ethos as a particular kind of “People of the Book,” we have written out of our story young people who don’t fit the mold. In my thirty years of experience as a camp director, school principal, and practicing clinical psychologist in both Israel and the United States, I have seen the effects of this “write out” on vulnerable children from all over the globe.
Who does a narrow definition of success exclude?
In our laser focus on professional success and educational merit, we have driven a wedge between Jewish identity and the self-image of thousands of Jewish youngsters. For many of our youngsters, and young people, their natural aptitudes and strengths deviate from communal expectations.
Not every child will excel in verbal-linguistic or mathematical intelligence. We have excluded from the category of authentic “Jewishness” entire classes of lower-earning people and youngsters whose natural skills and interests diverge from Jewish convention. Our institutions have forced self-alienation on masses of young people who would otherwise be proud Jews. Families have splintered because of parental unwillingness to accept a child’s otherness.
Isn’t the Jewish story elitist from the very beginning?
The biblical story of Isaac’s children describes Jacob as the “tent-dweller” and his twin brother Esau as a hunter, a man of the field. Jacob wins out in the biblical story, becoming the successor to Abraham and Isaac. Doesn’t Esau’s loss validate that the Jewish story picks the studious and reject the rambunctious, the hunters, the impulsive offspring who will not excel in the study hall?
The biblical story of Esau selling his birthright to Jacob describes thoughtless and impulsive behavior in almost textbook fashion: “And he ate, drank, arose, walked and disdained the birthright.” These five action verbs provide beautiful literary expression of the internal impulses that drove Esau right out of the Jewish story.
There could have been an alternative
The bible provides a alternative to the Esau story – King David. Like Esau, David was a redhead. And, by all accounts, he was blessed with lots of energy. We know him as a shepherd, warrior, musician, poet, spiritual giant, astute politician, father, husband, and good friend. We know him as a man where passion sometimes precluded reason. Yet, his energy was directed in positive channels. Because of those energies, he become king David!
Had Esau found constructive outlets, would the biblical story have unfolded differently?
At Matara, a residential treatment program in Israel, we refer to the failure to accommodate children and young people who don’t fit the mold as “The Esau Complex.” The young men and women who thrive in our program were often branded with modern labels – Autism, ADHD or Oppositional Defiant Disorder (ODD). We should be finding ways to nurture potential among the children who fall outside the comfort zone of our society. Instead, we have constructed a system that doesn’t understand them, that regularly debases their skills, and that drives them apart from family and community.
Rethinking and tapping the energy
Has it been your experience that as autism, ADHD and ODD diagnoses multiply or that schools make “accommodations” for “handicapped” students? Is it the case that school, and the wider society, view our out-of-the-mold kids as somehow second rate or disabled? Do these young women and men find that their strengths are debased?
The results for Jewish families, and for the Jewish community, are devastating. Experiencing failure and frustration year after year is a recipe for disaster. The results often include estrangement from family, alienation from community, and even a drift to substance abuse or other risky behaviors powered by low self-esteem.
It can be different. Our families, communities, and schools should be providing positive reinforcement for the multiple types of intelligence that our young people have. Non-verbal, non-mathematical intelligences need to be recognized, cultivated, and regarded. In Israel, a wide range of young people find opportunities to build on their natural talents. We are justly proud of our scholars and scientists, but the nature of society means that merchants, carpenters, construction workers, soldiers, bus drivers, bank clerks, plumbers, butchers, and bakers live side by side with doctors and lawyers.
At Matara, we are committed to finding avenues for young men and women to build self-esteem, self-worth, and competence. In our experience, the results are evident in improved family relations, greater identification and participation in the community, measurable improvements in functioning, and reduced risk of substance abuse.
If you are a community leader, educational professional, or a concerned parent, reach out to Matara for guidance. Whether you are facing failure to launch, have a child that just doesn’t fit in any school, or just want direction for how to meet the challenges, we are here to help.
It happens to most of us as we parent kids with disabilities, we hear statements like, “You are amazing, I could never do it.” “It must be so hard.”
Yes, it’s true, sometimes parenting kids with disabilities can be hard. We do have extra challenges that most parents of typical children don’t have to deal with, and our lives might look a little different than yours. But I hope you recognize that our lives look similar to yours too.
Can I be honest with you? Some of these comments – after a while – make me feel as if you think my child is not as lovable, and only certain people would be able to love my child or parent her. When you praise me for parenting my child, it says to me you feel fortunate she’s not your child because that would be hard and terrible and tragic. I know that’s not what you’re trying to communicate, I know that, but sometimes it does.
If I saw a friend with her typical child and I pointed at her kid and said, “I could never do it.” I think we would all agree it would be rude. That statement would say a lot about what I thought about her child, most likely not positive because I just said I could never do it. “What do you mean?” She’d probably ask offended. “I mean, it must be so hard to parent YOUR child!” Maybe right then she would have day dreams of punching me in the face. But I would not be surprised if she picked up her kid and walked away from me, offended, and reassuring her child he is loved, and wonderful, and she is lucky to be his mom.
It’s no different when I hear that. That’s how it makes me feel.
You see, the world tells us that disability is bad. When my youngest daughter was born with Down syndrome my midwife cried and the pediatrician shook his head and said he was sorry for giving us such bad news.
When we adopted our daughter who has cerebral palsy, a lady asked my husband, “Couldn’t you find a healthy one?”
Look back in history, we have not treated persons with disabilities as people. We have not treated them as equals. We still fight those messages and ideas today. Ask an adult with a disability how most of our society treats them, and think about how you would feel if you were judged based on your limitations. As the mother of two kids with disabilities, this pains me, because most people don’t know what I know, they don’t see what I see. They’re not part of our Friday night movie nights. Or our family vacations. They don’t see the pure joy of watching them dance and laugh and be kids. Disability is not a tragedy, what is tragic is how the world views disability.
I love my kids. And I’m not extraordinary for loving them, I’m their mom! How could I possibly not love them? How could I possibly not be their advocate, their teacher, their greatest supporter? You don’t think you could do it? Yes, yes you could do it! You would do it because you love your kids. And I am who you would be if your child had a disability. Having kids with disabilities is not reserved for the special few. It happens to me, to you, to my neighbor, and to the millionaire. Disability is part of life.
Comments that praise me for loving my child suggest that while everyone else got high speed wireless internet, I’m stuck with dial up. I mean that stinks, dial up of all things! “So sad you can’t enjoy the internet or participate in social media like the rest of us, I could never do it, I could never do dial up. I know what high speed wireless internet is like, it must be so hard to wait for the dial while everyone else is already on Facebook.”
My child is not the least desirable option, she’s not dial up, she’s a person. She has a unique personality, gifts, talents, ideas, likes and dislikes, a temper, a sense of humor, a big laugh, a tendency to melt my heart, and her arms wrap tight around my neck letting me know she loves me too.
Please, don’t hear me say I don’t want your support or encouragement, because I do. If you think I’m doing a good job, just say that, “Hey, you’re doing a great job.” If you think I look frazzled and you see my child is having some difficulties, I might be having a hard day, and if you really don’t know how I do it, chances are I might not know how to make it through the day either, so what about, “How are you doing?” Open the conversation, ask questions, let me know you care.
But please remember, I’m not amazing for loving my child, neither are you for loving yours. It’s what we do, we love our kids.
Look at your child, because you know no matter what happens, you will never stop loving your kids and you would do anything for them. If there was an accident and your child ended up disabled, you would care for them and love them just as fiercely as you do now.
I don’t feel I got the wrong end of the deal, I’m not stuck with dial up. I feel like the luckiest mom to call these kids my own. Please don’t praise me for loving my kids, they are lovable, they are mine.
New York Attorney General Eric Schneiderman brought about a settlement with Cigna that imposes a penalty of $50,000 and stipulates the company must not only revise its policies, it must pay autism claims that it previously had rejected, New York Business Journal reported.
Cigna must change its written policy banning coverage of neuropsychological testing for psychiatric conditions and autism spectrum disorder.
Further, the company has agreed to comply with Timothy’s Law, which requires group health plans in New York to provide “broad-based coverage for the diagnosis and treatment of mental, nervous or emotional disorders or ailments” that matches or surpasses coverage for other health conditions.
Coverage for psychiatric testing and care has long lagged behind coverage for other medical conditions. In 2008, the Mental Health Parity and Addition Equity Act brought some relief to consumers by preventing large health plans for structuring their coverage for mental health conditions much differently than their coverage of other medical conditions. Under the Affordable Care Act, the requirements were extended to individual plans.
“Parity is the new normal,” Dr. Colleen Barry, professor and associate chair for research and practice in the department of health policy and management at the Johns Hopkins Bloomberg School of Public Health, told Healthcare Dive last August. “We’ve passed the phase where transitional violations are OK and need to get to a point where the requirements of parity are being strictly enforced.”
Overall, the Substance Abuse and Mental Health Services Administration (SAMHSA) estimated 43.6 million American adults (about 18.1% of the population) have experienced mental health issues.
But mental health services can be costly. Autism in particular has garnered much public attention as the incidence of the condition rises — and those costs are going to get much worse. According to conservative estimates by health economists at the University of California Davis in 2015, direct medical, direct non-medical and productivity costs related to autism spectrum disorder will reach $461 billion annually by 2025. Should the prevalence of the disease continue to rise, costs will exceed those for diabetes by 2025.
Compliance with Timothy’s Law will put additional strain on Cigna, which suffered financial losses in the past year.
Thanks to early intervention and one determined mom, this young boy with autism is now a 24-year-old who surfs, cooks, paints and works at a resort.
It was the early 1990s, and architect-turned-flight attendant Rachel Fernandez was preparing to move to Switzerland with her husband, banker Keith Harrison, and their two children at the time, Alexander and Julyan. Before making the move, she decided to visit her parents in the Philippines. And it was here when Rachel came upon a piece in a popular daily about the 20 signs that a child is autistic. Rachel found herself ticking off 18 that applied to her second son, Julyan.
“Actually, all 20 applied to him,” Rachel says today on hindsight. “But I was in denial at that time.”Several friends and relatives already observed that there was something peculiar about Julyan. At 2 years old, he would not speak nor socialize. “He knew about 10 words when he was 1,” Rachel recalls, “and he somehow lost them.” When she consulted doctors, “They assured me that his development was just delayed.”
At the time, there was very little information easily available about autism. So when Rachel saw a seminar on the topic sponsored by an Australian society in Manila, she quickly signed up to attend. It was here where her worst fears were confirmed, and she couldn’t stop crying. “I went home and it dawned on me that my child might be autistic. The symptoms were all there.”
After her family settled in Switzerland, Rachel read every book she could get her hands on to learn about her son’s condition. “I was frantic. I was going to do everything in my power, everything I could do [for Julyan].”
In her research, she discovered and got in touch with Dr. Svein Eikeseth, a Norwegian doctor at the University of California in Los Angeles (UCLA), who was using a form of therapy called applied behavior analysis (ABA).
Today, ABA is known as the longest-standing form of therapy for children with autism. The Atlantic describes the therapy this way: “Certified therapists deliver or oversee the regimen, organized around the child’s individual needs — developing social skills, for instance, and learning to write a name or use the bathroom. The approach breaks desirable behaviors down into steps and rewards the child for completing each step along the way.”
Despite the distance, Rachel somehow managed to convince Dr. Eikeseth and UCLA to help her set up an ABA home program for Julyan, who was 3 in 1995 when he started the therapy. When Keith’s job took the family to Singapore, a persistent Rachel tapped the psychology students from the National University of Singapore to help her with what she and Dr. Eikeseth started.
Julyan had six hours of one-on-one therapy every day, which dropped to three hours by the time he entered school until he was 12 years old. But just a few weeks into the program, Rachel was already seeing progress. “He was able to say, ‘Mama,’ ‘Papa,’ ‘apple.’ It all depends on imitation, starting with actions then words. Napaiyak ako when I realized he could do those things.”
Today, Julyan is 24 years old, and he is working as one of the housekeepers of a Zambales beach resort, which sits on the land Rachel bought with her savings as a flight attendant. Called Zambawood, it is a haven for Rachel’s son who functions well in nature and craves for structure and schedule. At Zambawood and at the adjacent organic farm, Julyan’s Pine Beach Farm, where he is a farm assistant, Julyan thrived; in fact, he surfs and goes kayaking, paints, cooks, and has even built a bamboo bike! (His mother clarifies that Julyan is assisted by his best buddy, Jophel, who is the same age as her son.)
Rachel is thankful every day that she had the opportunity to provide for her son’s special needs. But, at the same time, she stresses how early detection and intervention was vital in her experience especially since autism covers a wide range of social, communication, and behavioral disorders. “Autism is for life, but you can help lessen the behavioral problems. Your child can have a purposeful life,” Rachel says, adding, “A lot of experts have solutions. It’s up to the parents to decide which therapy is good for the child and spot the skills they can be good at.”
In the future, Rachel hopes to build a community in Zambawood for adults with autism, supported by experts who can help them become productive. Julyan, of course, is ever present in her mind. “One day, we will all be gone. Now, I know, he will not be a burden to his two brothers (Alexander and the youngest Jonathan). There are many opportunities for Julyan to work with the community in Zambales, to have his own life.”
To parents with children with special needs, Rachel recommends that they need to find a way to learn how to relax. “I used to cry when I get frustrated because he couldn’t grasp simple tasks we taught him — I wanted him to catch up with kids his age. It’s easier for me to say that now,” Rachel smiles. “I have accepted his limitations, which are beyond our control.
“Take care of yourself. Take time to look after yourself. Go on a date with your husband, get a massage, take a trip. When you’re happy with yourself, when you have a clear mind, you can face your problems better. It’s not the end of the world. You can still live your life despite having a differently-abled child. Bigay ‘yan ng Diyos, [our children] are a blessing and a gift.
“Julian has taught me so many things in life. He has made me a better person. I have learned to love unconditionally. You develop so much patience; you expand your creativity! I pray for guidance, vision, and energy to make a difference to Julyan and to others like him. Resilience is key. You just go one step at a time.”