I Am In Here: The Journey of a Child with Autism Who Cannot Speak but Finds Her Voice by
Elizabeth M. Bonker & Virginia G. Breen, eBook 2011; an Extended Review with < My Thoughts >
by Sara Luker
Excerpts from the book – (4% indicates location in the e-Reader version of the book, instead of
page numbers).
Excerpts from book by E.M. Bonker & V.G. Breen, with < My Thoughts > by Sara Luker
4% Beauty bursts forth in the most unexpected places. Tiny flowers push their way through cracks in the asphalt of city streets. And often we glide past these quiet miracles without paying them much heed.
But I can’t anymore, because I live with one of those miracles: my thirteen-year-old daughter, Elizabeth. She is profoundly affected by autism and cannot speak. Yet she has summoned the courage to remain optimistic. She has shattered the silence of autism and found an escape from its shackles in the beauty of her poetry. Her poetry tells us about the inner world of autism and shines a light on the world around us.
5% When I asked Elizabeth how she wanted to introduce her book, she wrote:
Book Introduction
by Elizabeth M. Bonker
I want people to find peace in my book.
I want them to read my prayers
with understanding. Be at peace.
God loves you.
As usual, her words are better than mine and for that reason we have put all of Elizabeth’s writings in boldface so you can easily pick them out.
< My Thoughts > “Be at peace. God loves you.”
Some children on the autism spectrum talk about their love of God, angels, and praying, or other spiritual connections. This has always piqued my curiosity because many of these believers do not come from a family that has ever visited a place of worship, and they may not even be aware of the child’s faith.
5% The stories in between are written by me, from the perspective of a mom, with lots of help from some dear friends.
Elizabeth’s older brother, Charles, also has autism. But in an ironic contrast to Elizabeth’s struggle to speak, Charles rarely stops talking. Both have made great progress over a full range of social, language, and behavioral issues. Both are in mainstream public school with the help of wonderful, dedicated aides.
7% I cannot explain why our children bear the burden of autism. I’m no philosopher or theologian, just one of thousands of guilt-ridden mothers scratching and clawing to get our kids back from the tar grip of autism.
Me
by Elizabeth M. Bonker
(Written by Elizabeth at age nine)
I sometimes fear
That people cannot understand
That I hear
And know
That they don’t believe I go
To every extreme
To try to express
My need to talk.
If only they could walk in my shoes
They would share my news,
I am in here
And trying to speak every day
In some kind of way.
8% I have fought a great battle to heal Elizabeth and Charles. Elizabeth lost her ability to speak at fifteen months of age and fell into silence… Within a week of being given a battery of routine vaccinations…her voice was silenced and all the energy and mischief in her eyes drained away.
< My Thoughts > “Within a week of being given a battery of routine vaccinations…”
Before I quote the official statement from the CDC about autism, pediatricians Erdei & Dammann (2014) consider autism ‘The Perfect Storm’ whose true cause still remains elusive. One of the reasons they say this, is because “Autism is not a static disorder, but rather an ongoing (sometimes undetected) process.”
Others in the scientific community, who discuss autism in terms of ‘cause and effect’ talk about the ‘causal model’ as in needing Cause A to ‘absolutely & always’ result in Cause B. This has not yet been accomplished when referring to autism and vaccinations. So, when the definitive age for autism regression lines up perfectly with the age for the scheduled battery of immunizations, then establishing cause and effect is no longer such an easy task. Just saying.
The following is from: CDC; February 2013; Centers for Disease Control & Prevention, www.cdc.gov/vaccines -
“Sometimes, signs of autism do not appear until around the age that the first dose of MMR (Measles, Mumps & Rubella – aka German Measles) is given. Some toddlers who have turned 1 year old – or even 2 or 3 years old – regress. That is, they lose the ability to do things that they once were able to do. If regression follows a memorable event like a trip to the doctor for vaccinations, this may seem like cause and effect. However, there may be signs of autism before a child is old enough to get the first dose of MMR at age 12 months through 15 months. Developmental milestones can be found on CDC’s Learn the Signs, Act Early website.”
8% After my husband Ray and I watched our children complete two full days of testing (at the Yale University School of Medicine’s Child Study Center), we sat in the cramped, windowless meeting room as the Yale doctor joined us and said, “I have good news and bad news for you.”
We looked at him breathlessly as he continued without emotion, “The bad news is both Elizabeth and Charles have autism. The good news is you live in New Jersey, which has the best autism schools in the country.”
< My Thoughts > more good news bad news…
One of the reasons that New Jersey has the best autism schools in the country is because they have a higher rate of autism there than anywhere else in the country. Although the rest of the states are catching up, according to N.J. statistics, another reason is that they screen more than other states. Between January 1985 and May 2009, most cases reported to the CDC Registry came from New Jersey’s Bergen, Camden, Essex, Gloucester, Hudson, Mercer, Middlesex, Monmouth, Ocean and Passaic counties.
8% We felt as if the building had come crashing down on us. To this day, I still wince when I hear someone say “good news and bad news.”
Searching for any other scrap of hope, I asked him what we could do for the children medically. His answer was essentially “nothing.”
That night I took Elizabeth in my arms and cried. “Don’t worry sweetheart,” I told her. “Everything will be okay.” She looked into my eyes and blinked hers slowly and deliberately, like a stroke victim, to show me that although she could not speak, she understood what I was saying to her.
< My Thoughts > “She looked into my eyes and blinked hers slowly and deliberately, like a stroke victim…”
Sonny (who is non-verbal) rarely gives us eye contact, but he will blink for ‘yes’ and smile or turn his head away for ‘no’ in answer to basic questions like… “Are you okay?”
8% I stroked her hair softly, saying, “I know you’re in there, honey. We’ll get you out. I promise you that with all my heart.” …All the time wondering if I could keep my promise.
Autism manifests itself very differently in Charles. It always has. He did not have the sudden regression but developed language very slowly. …when he wasn’t speaking at three, we were concerned and took him to a local developmental pediatrician who declared that he had a “language delay.” Yale gave us the ‘A’ word for both children, the battle was joined.
Every educational and biomedical intervention that we have used with Elizabeth, we have also used with Charles, many times with very different results. That is why this battle can be so maddening for parents. Every child is so different.
< My Thoughts > “Every child is so different.”
I think that it is important to note that even within the neuro-typical family…each and every child is so very different. Add autism to the mix and the way that autism presents or expresses itself can also be very different with each child. Someone said that children with autism are like ‘snowflakes’…no two ‘autisms’ are ever alike.
Hus & Lord (2013), tell us the “differences in autism are striking.” Their study discovered some of the following ranges of differences from child to child:
In addition to these differences, some children with autism can start experiencing differences in the degree of their condition or disorder. These conditions and/or disorders may co-exist (be co-morbid) with the primary, autism. The differences can be sensory disorders, sleep disorders, gastrointestinal tract disorders, epilepsy, or learning and language delays. Also notable, was that the Hus & Lord study did not seem to find a correlation between age of parents nor the birth order of the child with autism, as causing a ‘difference’ in the way autism looks in the individual child.
I would like to add that there have also been older children with Down Syndrome found to be on the autism spectrum. Unfortunately, there aren’t any studies about this dual diagnosis out there yet.
9% Charles is our chatterbox, whereas most of the time Elizabeth appears to be locked in her own silent world. …She writes that she is “in agony” because of her inability to speak. Often the only way she can cope is by hitting her head repeatedly with her hand in frustration. I thank God that she has found a voice through her poems…
< My Thoughts > “She writes that she is ‘in agony’…”
Children existing under the ‘A’ umbrella are so different, in so many ways. Some children are in agony, some in bliss in their own world. In addition to the differences in how autism manifests itself, there are other defining factors present. For instance, the ‘personality’ factor.
Barger, et al. (2014) continued their predecessors’ investigation of the influence of personality or temperament on how children with autism express a response to their environment. “The Five Factor Model” they chose to use examines the following Natural Personality Model –
Within this model, researchers Barger, et al. wanted to discover how temperament reflects the way the child behaves. For instance, yet another layer of response can be reflected in terms of their latency, vigor, regularity, and intensity. They measured this by looking at the child’s activity level, bio-rhythms, reactions to novelty, adjustment to change, emotional reactions, moods, distractibility, attention span, and their ability to screen external stimuli.
9% You may wonder how such a young girl with autism and unable to speak found a way to communicate at all, much less with poetry. Seven years ago, in our desperation to connect with Elizabeth, we traveled to Austin, Texas, to see Soma Mukhopadhyay, who had taught her own son, Tito, to “write” by pointing out letters arranged alphabetically on a piece of laminated paper; commonly referred to as a “letterboard”.
< My Thoughts > From Soma’s HALO website – http://www.halo-soma.org
“Soma raised and taught her severely autistic (non-verbal) son Tito (who is now an adult) with little professional guidance. Although Soma held advanced degrees in chemistry, she had no formal training in autism before having her son.” “She has developed her own intensive educational curriculum. Activities included reading textbooks and classics, prompting him to point to numbers and letters, and physically ‘motoring’ his body through the motions like bicycle riding. By the time Tito was six-years-old, he could write independently.” “…Soma has refined her trademark Rapid Prompting Method while instructing hundreds of students throughout the United States.”
10% Over the course of several visits, Soma taught Elizabeth to write single-word answers and then full sentences with the letterboard. Soma has found that most of her students are so bright that they have taught themselves to read, but the simple act of pointing to each letter, the initiation of creating words, is a monumental challenge for them. That’s why a special approach is needed.
< My Thoughts > Soma has found that most of her students are so bright that they have already taught themselves to read, before they find her.
Many seem to have the propensity to teach themselves how to read. Reading itself is still a mystifying thing to me. As a former Literacy Specialist, I know that reading is considered to be the recognition of symbols which when strung together, hold special meaning. But at what point are children in the Primary grades really reading for understanding?
Most kids, like Sonny recognize the McDonald’s Golden Arches ‘symbol’ whenever and wherever they see them. No matter where they appear – on the street, on a billboard, in a newspaper or magazine. McDonald’s Golden Arches generate excitement for him; representing all the fries he can eat, washed down with his favorite drink.
Some children with autism can read though, but they cannot tell you ‘in their own words’ what they have just read. While many others, not only can read and understand meaning with deep comprehension, but can read with lightning speed. And, there are ‘readers’ everywhere in-between… all of this without formal training. In this case, with Soma’s help, Elizabeth has not only learned to read, but to write. One more of the mysteries of autism.
10% When Elizabeth finally learned to compose complete sentences, one of her first was, “I finally got to talk.” It represented the end of years of tantrum-filled lonesome isolation. For me, it was an intense moment of both joy and heartbreak. It was like Helen Keller’s signing “w-a-t-e-r” for the first time.
Years later, Elizabeth wrote a poem in which she tries to explain her daily battle:
Me Revisited
by Elizabeth M. Bonker
I can’t sit still.
What’s wrong with me?
My body is doing things I can’t explain.
My dignity I am trying to maintain.
People stare at me
When I rock and shake.
I don’t know how much
More I can take.
So much to deal with
Going on inside me.
I wish I could get better.
I want to be set free
From my silent cage.
11% Elizabeth’s autism has been a barrier and a connector as well. In many ways, I am connected with her more deeply because of her autism. What thirteen-year-old goes for walks in the woods with her mom? Elizabeth has taught me, words are not needed.
12% Like many parents of special needs children, I set the goal to have her mainstreamed in our local public school. I asked them, “Would you rather pay a little more now or a lot more for special education until she is twenty-one?” I thank God they saw it my way.
For three years, from the ages of three through five, Elizabeth underwent an intensive program based on the theory of Applied Behavioral Analysis (ABA) in our home, therapists paid by our school district implemented the program, teaching Elizabeth basic skills like identifying colors and objects. They taught her in very small increments, with rewards for each accomplishment.
< My Thoughts > “… Elizabeth underwent an intensive (ABA) program...”
The Applied Behavioral Analysis (ABA) method was developed by (University of California at Los Angeles) UCLA’s Dr. Ivar Lovaas, a behavioral psychologist. Lovaas believed that social and behavioral skills could be taught, even to profoundly autistic children, using his method. For very young children, ABA is more like play therapy. For older children the therapist asks a child for a particular behavior. If the child complies, s/he is given a reward in the form of a tiny food treat, a high five, or other desirable reinforcer. Eventually, the reinforcer is phased out and the child is considered no longer challenged in this area.
In addition, I would like to say that the family was very fortunate to have the school district provide this costly intervention as a ‘free’ program to Elizabeth. It could be that her school was linked to UCLA in some way, as they were the first to train therapists for Lovaas’ ABA program.
12% A full book could be written about our three years running an ABA program in our home. We’ve been eternally blessed by all who worked so hard and lovingly on our ABA team. They gave Elizabeth wings to fly.
Fly
by Elizabeth M. Bonker
I would like to fly
So very high
To be a bird soaring
When the rain is pouring.
I love rain and flying.
I wonder how it would be
to fly like a bird in the rain.
I think it would be amazing.
________
13% When Elizabeth was five, we intended to enroll her in mainstream kindergarten, but our school district thought she should be put into its newly created autism class. Unfortunately, the new autism classroom teacher assumed that Elizabeth had acquired no knowledge from her intensive, in-home ABA program. She forced Elizabeth to revert to the earliest “touch your nose” and “look at me” lessons that she had done as a toddler. Elizabeth erupted in fits of anger and rage. This was a dark time. I could barely keep myself under control at one of our weekly meetings at school…
Sadly, there were days when this teacher went further and took Elizabeth’s letterboard and communication device away from her as punishment for her behavior.
< My Thoughts > "Rewards & Consequences" –
“Sadly, there were days when this teacher went further and took Elizabeth’s letterboard and communication device away from her as punishment for her behavior.”
When the teacher’s took Elizabeth’s letterboard away, as a way to control her behavior, it may have seemed very logical… at the time. You know the saying – “It seemed like a good idea at the time!” Taking her letterboard away was a punishment, not a consequence. When methods are in conflict, teachers have been schooled in what is known as “Best Practices”. Along with what the parents are doing at home, schools are encouraged to use any programs the child has had success with, such as ABA or letterboard. The problem is, in this case, that Elizabeth’s letterboard is also a form of communication. Which is NOT part of a behavioral consequence nor a reward system such as may be found with an ABA program.
Sometimes teachers and aides get frustrated and in desperation they do something terribly wrong. While I was teaching a Special Education summer program, in the same school where my son attended, I left my classroom and went to his classroom to pick him up. The classroom seemed empty and at first I thought they had taken him out to the bus with the rest of the class. Then, from the nearby bathroom I heard Sonny crying. I heard the aide say crossly, “Sonny, if you don’t sit on the toilet you can’t go home with your mom!” Now he was crying even harder, heading for full meltdown.
WHAT???!!! “Can’t go home with your mom!” I literally had to grip the wall to keep from flying into the bathroom like a crazy person. So, I moved into position where only she could see me and gave her my best “mad dog” look. She immediately recanted by telling him sweetly, “Don’t cry… it’s okay” she said followed with… “Oh, LOOK Sonny, your mom is here to take you home!”
13% I reported it to the principal, explaining that it was the equivalent of putting duct tape over her mouth. Despite my best efforts, Elizabeth suffered that year, and it pains me now to think that I didn’t do more to protect her. I’ve been told that the teacher is no longer in education. Your children are safe.
< My Thoughts > “I reported it to the principal…”
In my experience, a school principals’ interest in the school’s Special Education program ranges anywhere from wanting to be involved and visiting the classroom, often. To those principals who never come near the Special Education classroom, even during teacher evaluation time.
(I share this about my own ‘Exemplary Teacher Evaluation’…) Me: “Thank you for the exemplary evaluation sir, but you haven’t actually seen me teaching my students…” He: “Oh, I saw you with ‘your kids’ in Art class.”
(I wanted to yell…) “Sir, so let me get this straight. Instead of observing me directly teaching students in my Special Education classroom, you observed me when I was coming in to check on my students, during Inclusion… while you were there evaluating that Art teacher?” “Wow! That was really taking the easy way out!!!”
In our school district, the students with IEP’s attend school until age 22. There are many principals who, throughout those years, support the Special Education Program and the Inclusion (of students into several General Education classes) and they even come to Individualized Educational Program (IEP) meetings. Many principals do a fine job helping to negotiate, mediate, and work with parents and teachers to assure every student’s success, but there are those who prefer observing from the seclusion of their office. Or, prefer to do a ‘twofer’. Smiles.
14% That year, we flew to Austin, Texas, four consecutive months for weeklong intensive “camps” with Soma, and we still visit Soma for intensive workshops to improve Elizabeth’s ability to write what is on her mind.
15% Over the years I’ve learned there are two types of teachers, perhaps driven by their personality as much as their professional history. One type view special-needs children as problems to be endured. The other type will see them as treasures waiting to be unearthed; to this teacher, parents are forever indebted.
< My Thoughts > “I’ve learned there are two types of teachers…”
I’d like to think that I am one of those teachers who is relentlessly mining for gold. My belief is that in every special child there is a spark of genius. Even among the lowest functioning on the spectrum, like my son, they have that certain ‘something’. It is up to us to find it, cultivate it and make it the first thing people see when they look at that child.
My son loves to have his hair combed, his shirt on straight, and his shoes very clean. He can flash you a great smile, if you are lucky enough to see it. He also has a terrific sense of humor and rolls on the floor laughing when in the DVD Toy Story, Bo Peep tells Woody – “Come up and see me sometime, I’m only a couple of blocks away” (as she stands near the toy wooden alphabet blocks). Smiles.
We eventually moved him to watching more age appropriate light comedy movies. He may not watch the whole movie but he always runs back in the room for the punch lines. Of course he watches these same movies over and over on a loop. We have three TV’s with DVD’s going on simultaneously, Toy Story, Blue’s Clues, and light comedies…Sweet Home Alabama, Legally Blonde, Maid in Manhattan, and Heaven Can Wait…and Knight & Day, to name a few. Having and cultivating a sense of humor can go a long way. Everyone learns best when they are having fun and feel that they are fun to be around!
16% Most people remember where they were on September 11, 2001. The world Trade Center had been my stomping ground for eight years while I worked on Wall Street. The week before 9/11, I was on the thirty-first floor of the South Tower. But on 9/11 I wasn’t in New York, I was home, on the phone, trying to get Elizabeth into yet another program.
The intensity and pressure of a twenty-year Wall Street career as a venture capitalist and board member of companies large and small prepared me for the challenges of autism. What keeps me going in both worlds is pressure and hope.
17% Children with autism have trouble with flexibility, making changes in simple routines can be traumatic. As a toddler, Elizabeth would get quite upset if we took a different route to the supermarket.
< My Thoughts > “Children with autism have trouble with flexibility…”
From: http://psychcentral.com/disorders/autism.htm... “For unexplained reasons, people with autism demand consistency in their environment. Many insist on eating the same foods, at the same time, sitting at precisely the same place at the table every day. They may get furious if a picture is tilted on the wall, or wildly upset if their toothbrush has been moved even slightly. A minor change in their routine, like taking a different route to school, may be tremendously upsetting.”
Sonny believes in all of the above. If something (one of his books) accidently has been left someplace (bathroom or kitchen) where it doesn’t ‘belong’, then he’ll tantrum until it is put back on his bed or his bookshelf… or, he will tantrum if it is moved. When he was going to school, if the school bus didn’t stop because the student wasn’t attending school that day… or had moved away, Sonny would bang his head on the bus window until the driver stopped the bus at the expected stop. The good news is that the school district provided an bus aide to ride with Sonny for that reason. Smiles.
19% Another common trait associated with autism is an overly active immune system that never shuts down, not even when its job of fighting off a cold or flu is done. It is always hyped-up in full fighting mode, so much so that the immune system begins attacking itself, causing inflammation from the intestines to the brain. This is thought to cause some of the odd “autistic behaviors.”
< My Thoughts > “the immune system begins attacking itself, causing inflammation from the intestines to the brain.”
Minocha (2014),“Scientists are increasingly appreciating the critical significance of gut barrier in health and sickness.” “Diseases are not solely determined by the genes but also by the manifestation of genes based on their interaction with the environment.” “Neurodegenerative diseases are widely believed to be precipitated by an environmental toxin that somehow enters the body and gains access to the brain.” “A healthy intestinal barrier is critical to not just intestinal health but to overall health throughout the body.” When the immune system in compromised, “the body’s immune system goes into attack mode, and this can trigger uncontrolled inflammation, setting the stage for chronic allergic and autoimmune diseases.” The author believes that is the gut link to regressive autism.
20% For many children with autism, stress comes from subtle sensory issues such as sights, sounds, and smells. Years ago, Elizabeth told us about the stress she felt when she saw certain colors and how she found a way to manage that stress.
< My Thoughts > “… stress comes from subtle sensory issues such as sights, sounds, and smells.”
Something stressful comes from smells. Legis, et al. (2013), conducted a study to investigate whether eight children with Autism Spectrum Disorder and eight age-matched children without ASD had the same stress reaction to smells. So as to measure their responses to pleasant and unpleasant odors more accurately, participants’ heart rate, facial expressions, and emotional states were also recorded as odors were introduced. In addition, researchers were looking for any possible ‘triggering of a primary fear response’.
This study brought about a great deal of attention because some thought it might help with early detection of those with autism. CNN (Cable News Network, http://www.cnn.com), a “new study suggests that children with autism might also experience smells differently from children who have typical development.” “… children with autism did not change their breathing in response to being exposed to different aromas.” Typical children quickly stopped inhaling unpleasant odors, while children with autism did not. “The fact that it does not require a verbal test means that the olfactometer could be used in babies as young as a few months old…” While typical children, of all ages, recoiled at the stench of rotten fish and sour milk, children with autism gave them a more “vigorous sniff.”
20% Elizabeth wrote –
“I like basic colors for basic things. When things get clear I must not see a quiet color like brown. I am looking at yellow because I feel clear, but when I get all confused I have to start looking for my DVD. DVDs can have smooth color effects. They are really noisy in a good way. Not at all confusing. But I get so confused when I hear someone ask me something too direct. I like to see bluish colors when I feel relaxed. I don’t mind it now, but don’t show me brown when I am mad!” This passage helped me realize why she watched so many videos as a youngster.
< My Thoughts > “I like to see bluish colors when I feel relaxed.”
Kendra Cherry, in her recent article “How Much Can the Color…Affect You? (2015) on the website, www.psychology.about.com, agrees with Elizabeth about the colors blue and yellow. “Blue calms the mind; gets rid of nervous tension…” and she even suggests wearing ‘blue-tinted’ sunglasses on stressful days. As for ‘yellow’, she says that this color “energizes; promotes learning (says make notes on yellow Post-its); improves memory and combats the doldrums.” She also cautions that too much yellow for too long can begin to irritate you.
22% Some of my closest friends are relentless autism moms whom I have never met face-to-face. We have met on the internet, creating our own virtual network of support. I know that I can email them at any hour with some panicked question and they will send it out on our network to get the answer. Mostly, we talk about poop. Healthy poop is a holy grail in autism land. Enough said.
< My Thoughts > “ … relentless autism moms whom I have never met face-to-face. We have met on the internet, creating our own virtual network of support.”
Clifford & Minnes (2013) researched a support group made up primarily of parents of children with autism from Canada and the United States. They determined that joining an online support group was “useful in making participating parents feel less alone and greatly increasing their knowledge of resources.” Parents reported that attending ‘group’ was more empowering, giving them greater feelings of acceptance towards their child and towards having a child with ASD. One parent said that being able to provide assistance to another group member helped her in return. Another parent felt that she was now able to better deal with her child’s behavior problems. Still other parents emphasized the value of learning with others about how to cope with their stress. Some stated that they were learning better ways to advocate for their child.
While there were others who felt that having more of an agenda or topic schedule would improve the discussions. Also, a parent mentioned that it would be advantageous to have a long-term measured response to popular intervention programs, they wanted to have more parents of older children with ASD participating in their support group. There is so much out there and so many like-minds online to have discussions with; it may be worth your time to search them out. Isolation is the enemy of families with autism.
22% The autism journey is an emotional roller coaster of hard decisions. We hear about a promising new treatment and have to decide whether it is worth the risk. The data may say that it only helps a small percentage of children, but if it helps Elizabeth, that’s all that matters. With the hard decisions of starting treatments comes the hard decision of stopping those treatments.
25% In our autism journey, I see it as a sign of great integrity when a doctor tells us, “I don’t know.” Elizabeth is on the road to recovery, but the road is long and winding. Unlike with other ailments, the autism road is not paved or well traveled with the proven treatment options clearly marked. Maybe someday science will catch-up.
< My Thoughts > Reading all of Elizabeth’s poems will help you understand how truly amazing and insightful she is. I hope you will take the opportunity to find the book and read each one of her beautiful poems.
<End of excerpts from book by E.M. Bonker & V.G. Breen>
==============
References used in < My Thoughts > are:
Barger, B. Campbell, J. Simmons, C. (2014). Measuring Five Factor Personality Traits in Autism During Early Childhood; Journal of Physical Disabilities; Vol 26:6 p775-792.
Clifford, T. & Minnes, P. (2013). Logging On: Evaluating an Online Support Group for Parents of Children with Autism Spectrum Disorders; Journal of Autism & Developmental Disorders; 43;1662-675.
Erdei, C. & Dammann, O. (2014). The Perfect Storm: Preterm Birth, Neurodevelopmental Mechanisms, and Autism Causation; Perspectives in Biology & Medicine; V57:4,p470-481.
Hus, V. & Lord, C. (2013). Effects of Child Characteristics on the Autism Diagnostic Interview-Revised: Implications for Use of Scores as a Measure of ASD Severity; Journal of Autism & Developmental Disorders; Feb/Vol.43;2, p371-381.
Legis, J., Messinger, D., Kermol, E., Marlier, L. (2013). Emotional Responses to Odors in Children with High-Functioning Autism: Autonomic Arousal, Facial Behavior and Self-Report; Journal of Autism Developmental Discord, 43:869-879.
Minocha, A., Lipski, E. (2014). Is It Leaky Gut or Leaky Gut Syndrome; LOGOS Enterprises, LLC, Shreveport, LA.
Sicile-Kira, C. (2014). Autism Spectrum Disorder (revised): The Complete Guide to Understanding Autism; New York, New York; Penguin Random House Company.
Elizabeth M. Bonker & Virginia G. Breen, eBook 2011; an Extended Review with < My Thoughts >
by Sara Luker
Excerpts from the book – (4% indicates location in the e-Reader version of the book, instead of
page numbers).
Excerpts from book by E.M. Bonker & V.G. Breen, with < My Thoughts > by Sara Luker
4% Beauty bursts forth in the most unexpected places. Tiny flowers push their way through cracks in the asphalt of city streets. And often we glide past these quiet miracles without paying them much heed.
But I can’t anymore, because I live with one of those miracles: my thirteen-year-old daughter, Elizabeth. She is profoundly affected by autism and cannot speak. Yet she has summoned the courage to remain optimistic. She has shattered the silence of autism and found an escape from its shackles in the beauty of her poetry. Her poetry tells us about the inner world of autism and shines a light on the world around us.
5% When I asked Elizabeth how she wanted to introduce her book, she wrote:
Book Introduction
by Elizabeth M. Bonker
I want people to find peace in my book.
I want them to read my prayers
with understanding. Be at peace.
God loves you.
As usual, her words are better than mine and for that reason we have put all of Elizabeth’s writings in boldface so you can easily pick them out.
< My Thoughts > “Be at peace. God loves you.”
Some children on the autism spectrum talk about their love of God, angels, and praying, or other spiritual connections. This has always piqued my curiosity because many of these believers do not come from a family that has ever visited a place of worship, and they may not even be aware of the child’s faith.
5% The stories in between are written by me, from the perspective of a mom, with lots of help from some dear friends.
Elizabeth’s older brother, Charles, also has autism. But in an ironic contrast to Elizabeth’s struggle to speak, Charles rarely stops talking. Both have made great progress over a full range of social, language, and behavioral issues. Both are in mainstream public school with the help of wonderful, dedicated aides.
7% I cannot explain why our children bear the burden of autism. I’m no philosopher or theologian, just one of thousands of guilt-ridden mothers scratching and clawing to get our kids back from the tar grip of autism.
Me
by Elizabeth M. Bonker
(Written by Elizabeth at age nine)
I sometimes fear
That people cannot understand
That I hear
And know
That they don’t believe I go
To every extreme
To try to express
My need to talk.
If only they could walk in my shoes
They would share my news,
I am in here
And trying to speak every day
In some kind of way.
8% I have fought a great battle to heal Elizabeth and Charles. Elizabeth lost her ability to speak at fifteen months of age and fell into silence… Within a week of being given a battery of routine vaccinations…her voice was silenced and all the energy and mischief in her eyes drained away.
< My Thoughts > “Within a week of being given a battery of routine vaccinations…”
Before I quote the official statement from the CDC about autism, pediatricians Erdei & Dammann (2014) consider autism ‘The Perfect Storm’ whose true cause still remains elusive. One of the reasons they say this, is because “Autism is not a static disorder, but rather an ongoing (sometimes undetected) process.”
Others in the scientific community, who discuss autism in terms of ‘cause and effect’ talk about the ‘causal model’ as in needing Cause A to ‘absolutely & always’ result in Cause B. This has not yet been accomplished when referring to autism and vaccinations. So, when the definitive age for autism regression lines up perfectly with the age for the scheduled battery of immunizations, then establishing cause and effect is no longer such an easy task. Just saying.
The following is from: CDC; February 2013; Centers for Disease Control & Prevention, www.cdc.gov/vaccines -
“Sometimes, signs of autism do not appear until around the age that the first dose of MMR (Measles, Mumps & Rubella – aka German Measles) is given. Some toddlers who have turned 1 year old – or even 2 or 3 years old – regress. That is, they lose the ability to do things that they once were able to do. If regression follows a memorable event like a trip to the doctor for vaccinations, this may seem like cause and effect. However, there may be signs of autism before a child is old enough to get the first dose of MMR at age 12 months through 15 months. Developmental milestones can be found on CDC’s Learn the Signs, Act Early website.”
8% After my husband Ray and I watched our children complete two full days of testing (at the Yale University School of Medicine’s Child Study Center), we sat in the cramped, windowless meeting room as the Yale doctor joined us and said, “I have good news and bad news for you.”
We looked at him breathlessly as he continued without emotion, “The bad news is both Elizabeth and Charles have autism. The good news is you live in New Jersey, which has the best autism schools in the country.”
< My Thoughts > more good news bad news…
One of the reasons that New Jersey has the best autism schools in the country is because they have a higher rate of autism there than anywhere else in the country. Although the rest of the states are catching up, according to N.J. statistics, another reason is that they screen more than other states. Between January 1985 and May 2009, most cases reported to the CDC Registry came from New Jersey’s Bergen, Camden, Essex, Gloucester, Hudson, Mercer, Middlesex, Monmouth, Ocean and Passaic counties.
8% We felt as if the building had come crashing down on us. To this day, I still wince when I hear someone say “good news and bad news.”
Searching for any other scrap of hope, I asked him what we could do for the children medically. His answer was essentially “nothing.”
That night I took Elizabeth in my arms and cried. “Don’t worry sweetheart,” I told her. “Everything will be okay.” She looked into my eyes and blinked hers slowly and deliberately, like a stroke victim, to show me that although she could not speak, she understood what I was saying to her.
< My Thoughts > “She looked into my eyes and blinked hers slowly and deliberately, like a stroke victim…”
Sonny (who is non-verbal) rarely gives us eye contact, but he will blink for ‘yes’ and smile or turn his head away for ‘no’ in answer to basic questions like… “Are you okay?”
8% I stroked her hair softly, saying, “I know you’re in there, honey. We’ll get you out. I promise you that with all my heart.” …All the time wondering if I could keep my promise.
Autism manifests itself very differently in Charles. It always has. He did not have the sudden regression but developed language very slowly. …when he wasn’t speaking at three, we were concerned and took him to a local developmental pediatrician who declared that he had a “language delay.” Yale gave us the ‘A’ word for both children, the battle was joined.
Every educational and biomedical intervention that we have used with Elizabeth, we have also used with Charles, many times with very different results. That is why this battle can be so maddening for parents. Every child is so different.
< My Thoughts > “Every child is so different.”
I think that it is important to note that even within the neuro-typical family…each and every child is so very different. Add autism to the mix and the way that autism presents or expresses itself can also be very different with each child. Someone said that children with autism are like ‘snowflakes’…no two ‘autisms’ are ever alike.
Hus & Lord (2013), tell us the “differences in autism are striking.” Their study discovered some of the following ranges of differences from child to child:
- Onset differences and severity differences
- Behavior differences and emotional differences
- IQ range differences from profound disability to superior intellect
- Developmental and expressive language level differences
- Differences in responses to program interventions
- Gender differences and age differences
In addition to these differences, some children with autism can start experiencing differences in the degree of their condition or disorder. These conditions and/or disorders may co-exist (be co-morbid) with the primary, autism. The differences can be sensory disorders, sleep disorders, gastrointestinal tract disorders, epilepsy, or learning and language delays. Also notable, was that the Hus & Lord study did not seem to find a correlation between age of parents nor the birth order of the child with autism, as causing a ‘difference’ in the way autism looks in the individual child.
I would like to add that there have also been older children with Down Syndrome found to be on the autism spectrum. Unfortunately, there aren’t any studies about this dual diagnosis out there yet.
9% Charles is our chatterbox, whereas most of the time Elizabeth appears to be locked in her own silent world. …She writes that she is “in agony” because of her inability to speak. Often the only way she can cope is by hitting her head repeatedly with her hand in frustration. I thank God that she has found a voice through her poems…
< My Thoughts > “She writes that she is ‘in agony’…”
Children existing under the ‘A’ umbrella are so different, in so many ways. Some children are in agony, some in bliss in their own world. In addition to the differences in how autism manifests itself, there are other defining factors present. For instance, the ‘personality’ factor.
Barger, et al. (2014) continued their predecessors’ investigation of the influence of personality or temperament on how children with autism express a response to their environment. “The Five Factor Model” they chose to use examines the following Natural Personality Model –
- Extraversion (sociability) – positive emotions, amount of physical energy/activity, considerateness and thoughtfulness to others. A naturally outgoing child.
- Agreeableness (social warmth) – compliance to directions from others, or stubbornness, antagonistic attitudes towards others. A naturally decisive child.
- Conscientiousness (impulse control and planning) – organized and careful, achievement oriented, or attention deficit. A naturally impulsive or ‘planful’ child.
- Neuroticism (negative emotions) – includes shyness, frequent displays of anger, negative emotions such as fear. A child stuck in the ‘terrible twos’.
- Openness (interest in new things) – intellect and interest in learning, sense of imagination and curiosity. A naturally inspired child.
Within this model, researchers Barger, et al. wanted to discover how temperament reflects the way the child behaves. For instance, yet another layer of response can be reflected in terms of their latency, vigor, regularity, and intensity. They measured this by looking at the child’s activity level, bio-rhythms, reactions to novelty, adjustment to change, emotional reactions, moods, distractibility, attention span, and their ability to screen external stimuli.
9% You may wonder how such a young girl with autism and unable to speak found a way to communicate at all, much less with poetry. Seven years ago, in our desperation to connect with Elizabeth, we traveled to Austin, Texas, to see Soma Mukhopadhyay, who had taught her own son, Tito, to “write” by pointing out letters arranged alphabetically on a piece of laminated paper; commonly referred to as a “letterboard”.
< My Thoughts > From Soma’s HALO website – http://www.halo-soma.org
“Soma raised and taught her severely autistic (non-verbal) son Tito (who is now an adult) with little professional guidance. Although Soma held advanced degrees in chemistry, she had no formal training in autism before having her son.” “She has developed her own intensive educational curriculum. Activities included reading textbooks and classics, prompting him to point to numbers and letters, and physically ‘motoring’ his body through the motions like bicycle riding. By the time Tito was six-years-old, he could write independently.” “…Soma has refined her trademark Rapid Prompting Method while instructing hundreds of students throughout the United States.”
10% Over the course of several visits, Soma taught Elizabeth to write single-word answers and then full sentences with the letterboard. Soma has found that most of her students are so bright that they have taught themselves to read, but the simple act of pointing to each letter, the initiation of creating words, is a monumental challenge for them. That’s why a special approach is needed.
< My Thoughts > Soma has found that most of her students are so bright that they have already taught themselves to read, before they find her.
Many seem to have the propensity to teach themselves how to read. Reading itself is still a mystifying thing to me. As a former Literacy Specialist, I know that reading is considered to be the recognition of symbols which when strung together, hold special meaning. But at what point are children in the Primary grades really reading for understanding?
Most kids, like Sonny recognize the McDonald’s Golden Arches ‘symbol’ whenever and wherever they see them. No matter where they appear – on the street, on a billboard, in a newspaper or magazine. McDonald’s Golden Arches generate excitement for him; representing all the fries he can eat, washed down with his favorite drink.
Some children with autism can read though, but they cannot tell you ‘in their own words’ what they have just read. While many others, not only can read and understand meaning with deep comprehension, but can read with lightning speed. And, there are ‘readers’ everywhere in-between… all of this without formal training. In this case, with Soma’s help, Elizabeth has not only learned to read, but to write. One more of the mysteries of autism.
10% When Elizabeth finally learned to compose complete sentences, one of her first was, “I finally got to talk.” It represented the end of years of tantrum-filled lonesome isolation. For me, it was an intense moment of both joy and heartbreak. It was like Helen Keller’s signing “w-a-t-e-r” for the first time.
Years later, Elizabeth wrote a poem in which she tries to explain her daily battle:
Me Revisited
by Elizabeth M. Bonker
I can’t sit still.
What’s wrong with me?
My body is doing things I can’t explain.
My dignity I am trying to maintain.
People stare at me
When I rock and shake.
I don’t know how much
More I can take.
So much to deal with
Going on inside me.
I wish I could get better.
I want to be set free
From my silent cage.
11% Elizabeth’s autism has been a barrier and a connector as well. In many ways, I am connected with her more deeply because of her autism. What thirteen-year-old goes for walks in the woods with her mom? Elizabeth has taught me, words are not needed.
12% Like many parents of special needs children, I set the goal to have her mainstreamed in our local public school. I asked them, “Would you rather pay a little more now or a lot more for special education until she is twenty-one?” I thank God they saw it my way.
For three years, from the ages of three through five, Elizabeth underwent an intensive program based on the theory of Applied Behavioral Analysis (ABA) in our home, therapists paid by our school district implemented the program, teaching Elizabeth basic skills like identifying colors and objects. They taught her in very small increments, with rewards for each accomplishment.
< My Thoughts > “… Elizabeth underwent an intensive (ABA) program...”
The Applied Behavioral Analysis (ABA) method was developed by (University of California at Los Angeles) UCLA’s Dr. Ivar Lovaas, a behavioral psychologist. Lovaas believed that social and behavioral skills could be taught, even to profoundly autistic children, using his method. For very young children, ABA is more like play therapy. For older children the therapist asks a child for a particular behavior. If the child complies, s/he is given a reward in the form of a tiny food treat, a high five, or other desirable reinforcer. Eventually, the reinforcer is phased out and the child is considered no longer challenged in this area.
In addition, I would like to say that the family was very fortunate to have the school district provide this costly intervention as a ‘free’ program to Elizabeth. It could be that her school was linked to UCLA in some way, as they were the first to train therapists for Lovaas’ ABA program.
12% A full book could be written about our three years running an ABA program in our home. We’ve been eternally blessed by all who worked so hard and lovingly on our ABA team. They gave Elizabeth wings to fly.
Fly
by Elizabeth M. Bonker
I would like to fly
So very high
To be a bird soaring
When the rain is pouring.
I love rain and flying.
I wonder how it would be
to fly like a bird in the rain.
I think it would be amazing.
________
13% When Elizabeth was five, we intended to enroll her in mainstream kindergarten, but our school district thought she should be put into its newly created autism class. Unfortunately, the new autism classroom teacher assumed that Elizabeth had acquired no knowledge from her intensive, in-home ABA program. She forced Elizabeth to revert to the earliest “touch your nose” and “look at me” lessons that she had done as a toddler. Elizabeth erupted in fits of anger and rage. This was a dark time. I could barely keep myself under control at one of our weekly meetings at school…
Sadly, there were days when this teacher went further and took Elizabeth’s letterboard and communication device away from her as punishment for her behavior.
< My Thoughts > "Rewards & Consequences" –
“Sadly, there were days when this teacher went further and took Elizabeth’s letterboard and communication device away from her as punishment for her behavior.”
When the teacher’s took Elizabeth’s letterboard away, as a way to control her behavior, it may have seemed very logical… at the time. You know the saying – “It seemed like a good idea at the time!” Taking her letterboard away was a punishment, not a consequence. When methods are in conflict, teachers have been schooled in what is known as “Best Practices”. Along with what the parents are doing at home, schools are encouraged to use any programs the child has had success with, such as ABA or letterboard. The problem is, in this case, that Elizabeth’s letterboard is also a form of communication. Which is NOT part of a behavioral consequence nor a reward system such as may be found with an ABA program.
Sometimes teachers and aides get frustrated and in desperation they do something terribly wrong. While I was teaching a Special Education summer program, in the same school where my son attended, I left my classroom and went to his classroom to pick him up. The classroom seemed empty and at first I thought they had taken him out to the bus with the rest of the class. Then, from the nearby bathroom I heard Sonny crying. I heard the aide say crossly, “Sonny, if you don’t sit on the toilet you can’t go home with your mom!” Now he was crying even harder, heading for full meltdown.
WHAT???!!! “Can’t go home with your mom!” I literally had to grip the wall to keep from flying into the bathroom like a crazy person. So, I moved into position where only she could see me and gave her my best “mad dog” look. She immediately recanted by telling him sweetly, “Don’t cry… it’s okay” she said followed with… “Oh, LOOK Sonny, your mom is here to take you home!”
13% I reported it to the principal, explaining that it was the equivalent of putting duct tape over her mouth. Despite my best efforts, Elizabeth suffered that year, and it pains me now to think that I didn’t do more to protect her. I’ve been told that the teacher is no longer in education. Your children are safe.
< My Thoughts > “I reported it to the principal…”
In my experience, a school principals’ interest in the school’s Special Education program ranges anywhere from wanting to be involved and visiting the classroom, often. To those principals who never come near the Special Education classroom, even during teacher evaluation time.
(I share this about my own ‘Exemplary Teacher Evaluation’…) Me: “Thank you for the exemplary evaluation sir, but you haven’t actually seen me teaching my students…” He: “Oh, I saw you with ‘your kids’ in Art class.”
(I wanted to yell…) “Sir, so let me get this straight. Instead of observing me directly teaching students in my Special Education classroom, you observed me when I was coming in to check on my students, during Inclusion… while you were there evaluating that Art teacher?” “Wow! That was really taking the easy way out!!!”
In our school district, the students with IEP’s attend school until age 22. There are many principals who, throughout those years, support the Special Education Program and the Inclusion (of students into several General Education classes) and they even come to Individualized Educational Program (IEP) meetings. Many principals do a fine job helping to negotiate, mediate, and work with parents and teachers to assure every student’s success, but there are those who prefer observing from the seclusion of their office. Or, prefer to do a ‘twofer’. Smiles.
14% That year, we flew to Austin, Texas, four consecutive months for weeklong intensive “camps” with Soma, and we still visit Soma for intensive workshops to improve Elizabeth’s ability to write what is on her mind.
15% Over the years I’ve learned there are two types of teachers, perhaps driven by their personality as much as their professional history. One type view special-needs children as problems to be endured. The other type will see them as treasures waiting to be unearthed; to this teacher, parents are forever indebted.
< My Thoughts > “I’ve learned there are two types of teachers…”
I’d like to think that I am one of those teachers who is relentlessly mining for gold. My belief is that in every special child there is a spark of genius. Even among the lowest functioning on the spectrum, like my son, they have that certain ‘something’. It is up to us to find it, cultivate it and make it the first thing people see when they look at that child.
My son loves to have his hair combed, his shirt on straight, and his shoes very clean. He can flash you a great smile, if you are lucky enough to see it. He also has a terrific sense of humor and rolls on the floor laughing when in the DVD Toy Story, Bo Peep tells Woody – “Come up and see me sometime, I’m only a couple of blocks away” (as she stands near the toy wooden alphabet blocks). Smiles.
We eventually moved him to watching more age appropriate light comedy movies. He may not watch the whole movie but he always runs back in the room for the punch lines. Of course he watches these same movies over and over on a loop. We have three TV’s with DVD’s going on simultaneously, Toy Story, Blue’s Clues, and light comedies…Sweet Home Alabama, Legally Blonde, Maid in Manhattan, and Heaven Can Wait…and Knight & Day, to name a few. Having and cultivating a sense of humor can go a long way. Everyone learns best when they are having fun and feel that they are fun to be around!
16% Most people remember where they were on September 11, 2001. The world Trade Center had been my stomping ground for eight years while I worked on Wall Street. The week before 9/11, I was on the thirty-first floor of the South Tower. But on 9/11 I wasn’t in New York, I was home, on the phone, trying to get Elizabeth into yet another program.
The intensity and pressure of a twenty-year Wall Street career as a venture capitalist and board member of companies large and small prepared me for the challenges of autism. What keeps me going in both worlds is pressure and hope.
17% Children with autism have trouble with flexibility, making changes in simple routines can be traumatic. As a toddler, Elizabeth would get quite upset if we took a different route to the supermarket.
< My Thoughts > “Children with autism have trouble with flexibility…”
From: http://psychcentral.com/disorders/autism.htm... “For unexplained reasons, people with autism demand consistency in their environment. Many insist on eating the same foods, at the same time, sitting at precisely the same place at the table every day. They may get furious if a picture is tilted on the wall, or wildly upset if their toothbrush has been moved even slightly. A minor change in their routine, like taking a different route to school, may be tremendously upsetting.”
Sonny believes in all of the above. If something (one of his books) accidently has been left someplace (bathroom or kitchen) where it doesn’t ‘belong’, then he’ll tantrum until it is put back on his bed or his bookshelf… or, he will tantrum if it is moved. When he was going to school, if the school bus didn’t stop because the student wasn’t attending school that day… or had moved away, Sonny would bang his head on the bus window until the driver stopped the bus at the expected stop. The good news is that the school district provided an bus aide to ride with Sonny for that reason. Smiles.
19% Another common trait associated with autism is an overly active immune system that never shuts down, not even when its job of fighting off a cold or flu is done. It is always hyped-up in full fighting mode, so much so that the immune system begins attacking itself, causing inflammation from the intestines to the brain. This is thought to cause some of the odd “autistic behaviors.”
< My Thoughts > “the immune system begins attacking itself, causing inflammation from the intestines to the brain.”
Minocha (2014),“Scientists are increasingly appreciating the critical significance of gut barrier in health and sickness.” “Diseases are not solely determined by the genes but also by the manifestation of genes based on their interaction with the environment.” “Neurodegenerative diseases are widely believed to be precipitated by an environmental toxin that somehow enters the body and gains access to the brain.” “A healthy intestinal barrier is critical to not just intestinal health but to overall health throughout the body.” When the immune system in compromised, “the body’s immune system goes into attack mode, and this can trigger uncontrolled inflammation, setting the stage for chronic allergic and autoimmune diseases.” The author believes that is the gut link to regressive autism.
20% For many children with autism, stress comes from subtle sensory issues such as sights, sounds, and smells. Years ago, Elizabeth told us about the stress she felt when she saw certain colors and how she found a way to manage that stress.
< My Thoughts > “… stress comes from subtle sensory issues such as sights, sounds, and smells.”
Something stressful comes from smells. Legis, et al. (2013), conducted a study to investigate whether eight children with Autism Spectrum Disorder and eight age-matched children without ASD had the same stress reaction to smells. So as to measure their responses to pleasant and unpleasant odors more accurately, participants’ heart rate, facial expressions, and emotional states were also recorded as odors were introduced. In addition, researchers were looking for any possible ‘triggering of a primary fear response’.
This study brought about a great deal of attention because some thought it might help with early detection of those with autism. CNN (Cable News Network, http://www.cnn.com), a “new study suggests that children with autism might also experience smells differently from children who have typical development.” “… children with autism did not change their breathing in response to being exposed to different aromas.” Typical children quickly stopped inhaling unpleasant odors, while children with autism did not. “The fact that it does not require a verbal test means that the olfactometer could be used in babies as young as a few months old…” While typical children, of all ages, recoiled at the stench of rotten fish and sour milk, children with autism gave them a more “vigorous sniff.”
20% Elizabeth wrote –
“I like basic colors for basic things. When things get clear I must not see a quiet color like brown. I am looking at yellow because I feel clear, but when I get all confused I have to start looking for my DVD. DVDs can have smooth color effects. They are really noisy in a good way. Not at all confusing. But I get so confused when I hear someone ask me something too direct. I like to see bluish colors when I feel relaxed. I don’t mind it now, but don’t show me brown when I am mad!” This passage helped me realize why she watched so many videos as a youngster.
< My Thoughts > “I like to see bluish colors when I feel relaxed.”
Kendra Cherry, in her recent article “How Much Can the Color…Affect You? (2015) on the website, www.psychology.about.com, agrees with Elizabeth about the colors blue and yellow. “Blue calms the mind; gets rid of nervous tension…” and she even suggests wearing ‘blue-tinted’ sunglasses on stressful days. As for ‘yellow’, she says that this color “energizes; promotes learning (says make notes on yellow Post-its); improves memory and combats the doldrums.” She also cautions that too much yellow for too long can begin to irritate you.
22% Some of my closest friends are relentless autism moms whom I have never met face-to-face. We have met on the internet, creating our own virtual network of support. I know that I can email them at any hour with some panicked question and they will send it out on our network to get the answer. Mostly, we talk about poop. Healthy poop is a holy grail in autism land. Enough said.
< My Thoughts > “ … relentless autism moms whom I have never met face-to-face. We have met on the internet, creating our own virtual network of support.”
Clifford & Minnes (2013) researched a support group made up primarily of parents of children with autism from Canada and the United States. They determined that joining an online support group was “useful in making participating parents feel less alone and greatly increasing their knowledge of resources.” Parents reported that attending ‘group’ was more empowering, giving them greater feelings of acceptance towards their child and towards having a child with ASD. One parent said that being able to provide assistance to another group member helped her in return. Another parent felt that she was now able to better deal with her child’s behavior problems. Still other parents emphasized the value of learning with others about how to cope with their stress. Some stated that they were learning better ways to advocate for their child.
While there were others who felt that having more of an agenda or topic schedule would improve the discussions. Also, a parent mentioned that it would be advantageous to have a long-term measured response to popular intervention programs, they wanted to have more parents of older children with ASD participating in their support group. There is so much out there and so many like-minds online to have discussions with; it may be worth your time to search them out. Isolation is the enemy of families with autism.
22% The autism journey is an emotional roller coaster of hard decisions. We hear about a promising new treatment and have to decide whether it is worth the risk. The data may say that it only helps a small percentage of children, but if it helps Elizabeth, that’s all that matters. With the hard decisions of starting treatments comes the hard decision of stopping those treatments.
25% In our autism journey, I see it as a sign of great integrity when a doctor tells us, “I don’t know.” Elizabeth is on the road to recovery, but the road is long and winding. Unlike with other ailments, the autism road is not paved or well traveled with the proven treatment options clearly marked. Maybe someday science will catch-up.
< My Thoughts > Reading all of Elizabeth’s poems will help you understand how truly amazing and insightful she is. I hope you will take the opportunity to find the book and read each one of her beautiful poems.
<End of excerpts from book by E.M. Bonker & V.G. Breen>
==============
References used in < My Thoughts > are:
Barger, B. Campbell, J. Simmons, C. (2014). Measuring Five Factor Personality Traits in Autism During Early Childhood; Journal of Physical Disabilities; Vol 26:6 p775-792.
Clifford, T. & Minnes, P. (2013). Logging On: Evaluating an Online Support Group for Parents of Children with Autism Spectrum Disorders; Journal of Autism & Developmental Disorders; 43;1662-675.
Erdei, C. & Dammann, O. (2014). The Perfect Storm: Preterm Birth, Neurodevelopmental Mechanisms, and Autism Causation; Perspectives in Biology & Medicine; V57:4,p470-481.
Hus, V. & Lord, C. (2013). Effects of Child Characteristics on the Autism Diagnostic Interview-Revised: Implications for Use of Scores as a Measure of ASD Severity; Journal of Autism & Developmental Disorders; Feb/Vol.43;2, p371-381.
Legis, J., Messinger, D., Kermol, E., Marlier, L. (2013). Emotional Responses to Odors in Children with High-Functioning Autism: Autonomic Arousal, Facial Behavior and Self-Report; Journal of Autism Developmental Discord, 43:869-879.
Minocha, A., Lipski, E. (2014). Is It Leaky Gut or Leaky Gut Syndrome; LOGOS Enterprises, LLC, Shreveport, LA.
Sicile-Kira, C. (2014). Autism Spectrum Disorder (revised): The Complete Guide to Understanding Autism; New York, New York; Penguin Random House Company.
