Help Wanted

Have you ever seen a “help wanted” ad like this? I definitely have not, not even once in the many years I have spent perusing classified ads. But one day soon, and I hope this comes in my child’s lifetime, I certainly hope that someone somewhere will give my son and all individuals of special abilities this chance at marking their place in the world.

Employment. The dreaded E word. With our children growing fast into teens and adults and their parents growing old, we start to look forward to the future, and sadly, see little opportunities for professional or occupational growth for them. We spend our lives helping them learn and grow and thrive, only to find another seemingly insurmountable wall facing them. How many employers will take a chance on capable individuals who are judged solely based on diagnosis? How many businesses will risk the bottom line to wade into previously unknown waters?

Not very many.

True, individuals with autism fill the whole spectrum of abilities and dis-abilities, and as such, are not able to fit in typical workplaces. Yet, when one thinks of it, what must seem like a limitation in some settings may actually work in others. For example, your child’s rigidity and adherence to structure may work in some settings where rules are absolute and nonnegotiable; his obsessive eye for details may be a highly desirable attribute in work places that value a keen eye. Sometimes, too, his lack of social connectivity may be  advantageous in work that virtually isolates the individual and his fixation and fascination for specific things or issues may make him a veritable expert in the subject. Most importantly, however, many of our children possess distinct virtues that, in an ideal world, would be highly coveted- honesty (they do not lie or steal) and dependability being two of them.

As parents, caretakers, and teachers of our children, it is up to us to empower them with appropriate education, job matching, training, and support. It is up to us to set up the infrastructure that will enable them to become self-sustaining individuals, be it through employment or through entrepreneurship. It becomes our task, also, to educate employers and to assist them with mentoring our children. The key is to do so with an open, honest heart.

Only when we start to see past limitations and disabilities are we able to look forward to a future of a million possibilities.

Find out more what the future holds for your child in “Workers and Entrepreneurs for Autism,” Professor Archie David’s lecture on Day Two of the 11th National Conference on Autism. As founder and executive director of the Independent Living Learning Centre (ILLC) , Teacher Archie’s expertise in Occupational Therapy has helped shaped children’s lives through training and vocation.

Hurry and register now! Early Bird Rates have been extended until October 16, 2009.

The Sick Sense(s)

Dr. Temple Grandin

Temple Grandin, perhaps the most famous person with autism in the world, knows only too well how her senses have defined many of her reactions in life. As a young child, she was absolutely terrified of loud noises. She likened the ringing of the school bell to the pain caused by a dentist’s drill on a nerve. Clothes felt like sandpaper against her skin. Anything — from the sound of popping balloons to the sensation of the stitches in the hem of her clothes — can set off a chain of reactions spanning from mild distaste on one end to full-blown meltdowns on the other.

And she is not alone. It is estimated that more than ten percent of children, a great many of whom also have autism, have senses that are not fully organized and as such, respond to external stimuli in extremes of sensitivity and defensiveness. My own son Alphonse, while seemingly oblivious to pain many times, hates the feeling of tags on his clothes. He writhes, as if in real pain, and will tear his clothes to pieces unless the tags are removed.

For years too, he could not tolerate anything on his head. Caps, hats, and hoodies were no-no’s. Haircuts were almost impossible to give and could only be performed when he was in deep sleep. These challenges are among the many he continues to struggle with on a daily basis.

It was my eldest son Alex who coined the term “sick sense” after watching M. Night Shyamalan’s hit movie “The Sixth Sense.” He was but six at the time and immensely curious why his four-year-old brother could not tolerate wearing a cap on his head. Trying to explain to him that Alphonse had difficulty dealing with the information from his senses, he quipped “Oh, he must have a “sick sense,” Mama.” True, the term is a child’s oversimplification of something he did not fully understand, but it also makes a lot of sense. When we consider that receiving, interpreting, and processing information from our senses are tasks we do almost without thought many, many times a day, it is not at all a stretch to understand that difficulties in these areas arise from a dysfunction in the nervous system.

We call them Sensory Processing Disorders or Disorders of Sensory Integration (DSI). Some are exhibited in mild differences in the way a person perceives and interpret stimuli; others are vastly unusual reactions that can border on fear, frustration, and anger. Some are not troublesome or disruptive and can, in fact, be unique gifts of ability and discernment. And yet some are so crippling and so devastating that they can diminish the quality of a person’s life. What Dr. A. Jean Ayres described in her first article in 1955 and in her first book in 1972, “Sensory Integration and Learning Disorders,” are parts of real day-to-day experiences individuals with autism face.

In the forthcoming Autism Society Philippines’ 11^th National Conference on Autism,  we take a quick crack at the puzzle that Disorders of Sensory Integration is. Moreover, we will learn of the most widely-used interventions — some of which may benefit your own child. Mr. Rolland Lyle Duque, one of our country’s Occupational Therapy experts, will separate fact from fiction by dispelling popular misconceptions and explaining the science to the different approaches to DSIs. I’ve a few questions already lined up in my head in an effort to understand more what my son goes through everyday. I strongly encourage you to do the same.  After all, we’re all in this together. 

Hurry and register for Autism Without Borders (where HOPE prevails)! There are only a few more days before Early Bird rates end!

PROMPT And (Autism) Circumstance

When a child is handed a diagnosis of autism, the most common educational “prescriptions” are the three-fold approach of special education, occupational therapy, and speech therapy. Each addresses a host of challenges an individual with autism faces; each encompasses a wide variety of approaches and philosophies. And yet, nothing stumps more people than problems with communication. The ability to make purposeful sounds, to talk, and to communicate often seems like an elusive dream, especially for the more affected individuals in the spectrum.

It used to be said that when a child reaches the age of seven and still has not learned to speak, speech and language are inevitably lost causes. Whoever assigned the age of seven as the arbitrary cut-off point for speech and language obviously has not heard of PROMPT.

PROMPT, or Prompts for Restructuring Oral Muscular Phonetic Targets, is a systematic technique of treatment for speech production disorders developed in the late 1970s by Deborah Hayden. While other approaches for speech therapy rely on purely auditory and visual inputs, PROMPT employs touch, positioning, and movement to allow the motor structures of the mouth to learn to work together to produce purposeful sounds, speech, and eventually, language.

The philosophy behind PROMPT is dynamic and integrates the different aspects of a human being. It takes into careful study not only the structures that produce sounds (the lips, tongue, vocal cords, facial muscles, among others), but also the other body systems that affect social interaction and motivation. This is particularly effective for individuals with autism considering their difficulties in skills that rely on purely imitation. However, while it is successful in helping communication problems in autism, this technique is a boon to anyone suffering from speech production disorders.  

I remember the first time Alphonse said “Mama;” it was music to my ears. He was nine years old at the time, and up to that point, had only been able to say very few words at the most unexpected times, never to repeat them again. After a few weeks, “mama” disappeared from his vocabulary. The next time he said it again, he was already halfway into his 14^th year. This miracle happened just a few short months ago.

Around half of all children with autism never develop speech; this is a real and heartbreaking fact. Alphonse has been nonverbal all his life and continues to struggle to make even the simplest of sounds. But while the odds are against him, I dare not lose hope. We passed the seventh year milestone many years ago (Alphonse turns 15 in a few months), but there is always tomorrow. In autism, love and hope are our constant life source.

Teacher Jeri Casas

To learn more about PROMPT, I invite you to listen to Ms. Maria Jerilee Casas, CSP, PASP, at the 11^th National Conference on Autism of Autism Society Philippines. Teacher Jeri is one of our homegrown local experts on autism and the only Filipino speech pathologist accredited by PROMPT Institute to give a public presentation on their behalf. Hurry! The early bird rate  is on its last week, so take advantage of these savings!

Autism Society Philippines’ 11^th National Conference on Autism

October 24-25, 2009

SMX Convention Center, SM Mall of Asia

DAISY In Bloom

Like the common daisy (Bellis perennis), DAISY grows close to the ground, spreads its roots, and blossoms into a thing of beauty. Seeking to penetrate grassroots level by making learning and knowledge accessible to all, it is certainly a dream come true for many.

DAISY is Digital Accessible Information System, a multimedia publishing system that enables differently-abled individuals to be taught through their own learning styles, whether it be visual, auditory, tactile/kinetic, or a combination of any of these three. A system of software and hardware that combine synchronized audio, text, and pictures, it answers many of the problems faced by individuals who do not learn through the traditional “sit-down-and-listen” way.

Alphonse, my son, is one of these non-traditional learners. Because he is considered “low-functioning,” the pursuit of academics was something long denied him. His programs include those that cater to functional abilities such as self-help and activities of daily living. And yet, for a person who is deemed “unfit” for the classroom, my son loves being read to and listens when the subject is something that interests him.

I remember how Alphonse would linger in the room whenever I read a Harry Potter book to his big brother. He would mutter silently to himself as he walked around the room but we also noticed that he would not leave until story time was finished. We asked him questions about what we read. Writing choices down on a whiteboard, he got the answers right most of the time. When asked where Harry goes to school, he looked at the choices (Hogwash and Hogwarts), pointed to the latter, and started laughing. Seemed he found Hogwash really funny.

Buoyed by this, a few months ago, my husband and I braved the lines at an SM mall three-day sale just to get our him a rather expensive interactive reading system. The system comprised of a battery-operated pen and a couple of interactive books. Alas, books made of paper are perfect for ripping, something I failed to account for. As such, Alphonse has very limited use of his reading system, unless watched like a hawk and supervised constantly.

Mr. Hiroshi Kawamura

The potential for DAISY seems endless. Using DAISY eliminates many of these challenges our children face and introduce them to a medium that is open for exploration and learning. Human narration which can be slowed down according to the desired speed without distortion and easy navigation tools to make moving around a story easier (as opposed to flipping or rewinding cassettes, or starting CDs all over again) help differently-abled readers overcome their difficulties. These and many more are what Mr. Hiroshi Kawamura, President of the DAISY Consortium, hopes to demonstrate and show to autism families in Autism Beyond Borders (where HOPE prevails), Autism Society Philippines’ 11^th National Conference on Autism.

As a parent who is willing to try anything to help my son adapt more to this world, I am excited by every new discovery. Listen to how DAISY can change your child’s life at the 11^th National Conference on Autism . Join us on October 24 and 25, 2009, at the SMX Convention Center, SM Mall of Asia.  DAISY seems set to help children like my son bloom, like the vivid, brilliant flower that  he really is.

Seizing Answers

“Before I knew what a seizure was, my son was taken down. He went down many times from ages two to three. The first was in the kitchen, collapsed on the floor. Later, it happened like a geography dream. Each seizure had its own place and its season: in the supermarket, aisle two; naked on the rug in my father’s home; at the top of Silver Hollow in the middle of winter. It’s not something a person can get used to. Each place and circumstance lodges in the mind indelibly. Each time it’s a loss of sudden nature.” ~From Valerie Paradiz’s “Elijah’s Cup”

The beginning of “Elijah’s Cup” hooks you into submission. Ms. Paradiz’s ability to captivate with words makes her moving account of her family’s journey lyrical, almost poetic. And yet, one can also sense the very strong undercurrents of fear hidden beneath her spellbinding words. Imagine a mother holding a small toddler of two in her arms as his eyes roll back and he becomes rigid and unresponsive. Imagine. Far removed from the literary magic that is woven in “Elijah’s Cup,” we begin to understand what seizures can do. But what is a seizure?

www.pediatricneurology.com/seizures_for_kids.htm

In its simplest definition, a seizure is an abnormal electrical activity in the brain. Laymen often call seizures convulsions or epilepsy, but suffice to say that while we are free to use these terms interchangeably, they do NOT mean the same thing. We cannot see with our naked eyes what happens to the brain while a person has a seizure, but the physical signs are almost universal. To make matters a little more confusing, allow me to briefly interject that there are also subclinical seizures, or those whose symptoms cannot be detected through simple observation. Typically, however, a person who has a seizure may have all or some of the following: changes in consciousness, vision, sensation, and/or emotions, loss of muscle control (falling is an example), and uncontrollable muscle movements (twitching, shaking, and/or rigidity).

The causes of seizures are varied and many. Some are idiopathic, meaning they occur without an identifiable cause. Some are caused by tumors, exposure to drugs, traumatic brain injuries, or infections. In short, almost anything that injures the brain can cause a seizure.

What concerns many parents with children with autism is the strong association autism has with seizures. A friend of mine recalls learning about this at an Autism Society Philippines’  conference years ago, when her son was young, and it filled her with such dismay that she wept uncontrollably. On my part, I remember reading about this in Dr. Eric Schopler’s 1992 book, “Asperger Syndrome or High Functioning Autism,” with a reference made to “low-functioning” autism and higher rates of epilepsy as compared to individuals with High Functioning Autism and Asperger Syndrome. My own son, Alphonse, is considered “low-functioning,” and while he continues to defy his prognosis, this bit of information frightens me no end.

Studies have already shown that roughly a third of individuals with autism have a seizure disorder. Moreover, it is said that about 25% of these individuals begin to have seizures during puberty. What does this mean for my son and for many others like him on the cusp of adolescence, and soon, adulthood? What do I look out for? How do I know what he feels when he is nonverbal and unable to express anything beyond his most basic needs? Are behavior problems — aggression and self-injury — also indicative of seizure activity? How do I differentiate his tics with a seizure? How will I know?

Dr. Knut Baalerud

There are more questions than answers for now, and I am grateful that Dr. Knut Erik Baalerud, current head of the Department of In-Patient Treatment in General Psychiatry in Ringerike Hospital, Norway, has agreed to speak to us at the Autism Society Philippines’ 11th  National Conference on Autism . Sharing his years of experience and expertise gained from working with individuals with special needs, autism being one of them, Dr. Baalerud is certainly a welcome addition to this year’s conference.

I often wonder, late at night, what the future holds for my son. I may not have all the answers today, but I seize each moment with the promise of hope. Come to Autism Beyond Borders (where HOPE prevails)  on October 25 and 26, 2009 at the SMX Convention Center. Registration is still open and early bird rates still apply. 

Come. Maybe you and I can find the answers together.

Therapy For Daily Living

This year alone, Alphonse has gone through five trampolines. All are in various stages of disrepair, with broken springs, bent frames, and torn fabrics. We buy trampolines almost as fast as he can destroy them – well, perhaps, not fast enough.

Alphonse likes to jump. I remember that he started jumping before he could even walk. One of our family videos shows him jumping on the living room couch while his nanny held him upright, her hands firmly planted on his armpits. He was only eight months old at the time. When he did learn to walk a few months later, we were amazed to see him jumping unaided very soon after.

And boy, can he jump! Even now, he jumps tirelessly, his arms swinging front to back in regular, sweeping motions. With knees bent and his spine straight, there is ferocious grace and impeccable balance in his movements.

The Jumper, age 2

We’ve always known that he loves physical movement. Jumping is an important avenue of expression for our boy without words. When he jumps, all is right in his world, and in ours. He is happier and calmer; he smiles more, he has less tantrums.

When we began to lose trampolines to the trampoline graveyard in quick succession, we realized that we needed to channel his energies to other, more age-appropriate activities. Through his teachers’ patient mentoring, Alphonse has learned the basic rudiments of basketball  such as shooting or dribbling, but the sport itself didn’t hold any fascination for him. Ditto with soccer or bowling or miniature golf. I guess the importance of shooting a ball into a basket or kicking a goal is simply lost on him. He performs these actions mechanically, and performs them almost to perfection, but it’s apparent that they hold no special meaning for him.

However, the game of tag, or “habulan” in the vernacular, is another matter altogether.

It was an accidental discovery, a fortuitous turn of events. Alphonse has always liked to gallop aimlessly in the garage, touching certain objects in ritualistic fashion. Once, Nanny decided to play a trick on him by running away with his bottle of bubbles. He ran after her to retrieve the item but she was too quick for him. He pursued her, she dodged him; he chased her, she evaded him. A few minutes later, the sound of squeals and laughter filled the house. He had caught her, and having done so, recovered his toy. To our amazement, though, he started running, this time glancing backwards to see if anyone was following. When we did, he started shrieking in delight again.

These days, Alphonse’s tag is part of our afternoon regimen for him. It may not be as sophisticated as organized sports, but it engages his attention to others around him while providing him with exercise and activity.

The benefits of play and exercise are borne of much more than pure common sense. True, our own parents had a similar advice for us at the start of our child-rearing experiences: “Pagurin mo ang bata sa laro at matutulog yan nang mahimbing.” (Literal translation: Wear a child out with play and he will sleep soundly.) But beyond sleep and rest, both are known to help children focus their wandering minds, enabling them to perform tasks better. They can calm frayed nerves and diminish the effects of stress.

It makes sense, therefore, that combined play and exercise became one of the cornerstones of Daily Life Therapy, an integrated approach to learning, education, and wellbeing for individuals with autism in use in Higashi schools. Higashi schools (there is one in Tokyo, Japan and another in Massachusetts, USA), one of the few Eastern models of special education widely recognized in the world, work on the principles founded by Dr. Kiyo Kitahara in 1964. Its longevity is a measure of its general acceptance as a tool in the integration of individuals with autism into society. Believing that the individual with autism must be a whole person — in terms of learning, behavior, and well-being — Daily Life Therapy, as the name suggests, is an integrated, multi-faceted approach to the challenges of daily living.

Mr. Toshihiro Ogimura

On the occasion of Autism Society Philippines 11th National Conference  on October 24 and 25, 2009 at the SMX Convention Center, we are given an in-depth look into Daily Life Therapy, the Higashi Schools, and their residential programs via conference speaker Mr. Toshihiro Ogimura, who currently holds the position of Director of Training Institute of the Boston Higashi School. He has worked directly with students with autism as residential director in the high school division. He is also one of two special post-conference speakers, with a whole day dedicated to “Teaching Strategies and Behavior Management  of Daily Life Therapy”  on October 27 at the Skydome of SM North EDSA.

Truly, there is much to learn in the world about autism. That we get to exchange ideas and share concerns with others of a similar vocation, even for a brief four days, is an opportunity simply too good to pass up. So, hurry and register now! Early bird rates apply only until September 30. Autism Beyond Borders (where HOPE prevails) will open the world for you.

For more on Daily Life Therapy, please visit The Boston Higashi School website.