I have not read a book quite like this one before. The Story of Beautiful Girl is about a intellectually disabled young woman, Lynnie, who does not speak and an African American man, Homan, who is deaf. Both of them have been institutionalized at The School for The Incurable and Feeble Minded, but but have escaped. They show up at the farmhouse of a widowed, retired school teacher seeking shelter in the middle of the night.
Rachel Simon Introduces The Story of Beautiful Girl
I found this book compelling. The story covers a 40-year time span, and at times I felt it could have been more than one book. I was never bored reading this story and have reread it more than once. It is a book with heart.
Simon uses the backdrop of the 1960s mental institutions where many of society’s undesirables were housed. Some of the situations described are heart rending and feel like they could have been based on true events.
Simon delves into various issues but in the end the story wraps up neatly while still providing much food for thought. The story concludes on a happy note, which some may find unrealistic for a book about this topic. Normally, I do not care for endings that are too much a reach, but I like this book.
Some people have found this to be a difficult read. I found it thought provoking.
The story explores issues relating to the treatment and discrimination against those deemed “Feeble Minded”. In addition, characters wrestle with the meaning of suffering and the existence of God.
The Story of Beautiful Girl contains mature issues relating to abuse of the disabled, rape, conditions of institutionalized people with disability in the time period, abandonment, and mistreatment.
When I first started asking around in the Asperger’s and Autism community about the whole church issue, the stories I heard made me mad. By the time I’d gotten a few more responses, I was sad. Overwhelmingly sad. The stories did not stop coming.
It breaks my heart when people say they regret staying at their church and wished they had left sooner.
The responses I gathered were from Christian people desiring fellowship. Many of these believers are actively seeking a church or Bible study in spite of bad experiences.
Why is church so hard for people on the autism spectrum?
Getting to the Church on Time, Late, or At All
Every mom knows this is a battle, but with Autism Spectrum Disorder it is multiplied. Most people on the spectrum have terrible issues with insomnia, getting restorative sleep, and waking. When I say trouble waking, I am not kidding. A regular topic is how to wake up. I read somewhere in an autism advocate’s writings about the need for an alarm clock that shakes and shrieks.
Trouble organizing, estimating and managing time, the other hundred hurdles every day brings with sensory, eating difficulties, motor skills issues, and so on make getting out challenging on any day. Sunday is no exception.
Sensory Overloads and Processing Problems
Sensory overload is another big issue. Loud music, flashing lights, over powering perfume add up to an sensory cocktail that can quickly overload. While these things may be a minor irritation to some, for others the input is akin to a sensory onslaught.
The format and language of today’s church can be difficult for a literal-minded person to understand. An emphasis on emotion rather than thought and logic make it hard to grasp the message.
It is a social setting. This is a minefield for someone who can’t read body language, has difficulty recognizing faces, or any of the myriad of other cognitive or social skills typically lacking in a person with ASD. Often, children and young adults are expected to be “friends” at church to the same people who bullied the child at school. People who greet with a hug then ignore the minute they step out of the church door, or even before, will probably be interpreted as hypocritical.
Rejection at Church
Rejection and bullying is something I heard about over and over when I brought up the issue of church. Family members of all ages were bullied. Adults bullied children. Being rejected by people at church is an issue I heard about over and over. You can read about an instance that happened to my kids at church here.
And, no, this one situation did not cause us to leave that church. Often we have to weigh the cruelty of ignorant people against the benefit for our children of continuing to attend.
One of my kids visited a local church a while back. An adult in the youth group began making derogatory statements about persons with disabilities. The fact that this man felt comfortable saying these things in front of leadership and the students made it clear this was not a place we cared to be. Talk about how to keep visitors from coming back!
While the majority of people are kind and caring, I’m sad to say I wasn’t particularly surprised by this encounter.
Exclusion
People assume that since this person is not connecting socially they are not aware of these slights, but sometimes appearances are deceiving. Some autistics are exceptionally intuitive. The inability to express oneself does not necessarily mean a person has no thoughts or feelings on a matter.
Leadership that avoids their students with more needs, or even become hostile to students who ask too many questions is a frequent problem parents cited. Aspies tend to have no qualms responding to the challenge to “prove me wrong”. A lack of social skills coupled with honest answers from a young person who may have an above average IQ can be misinterpreted by youth workers and lead to exclusion.
Do You Want to Be the Church?
I was heartened to find some excellent resources for churches and ministries interested in reaching the “one out of the ninety-nine” as Dr. Stephen Grcevich from Key Ministry put it.
This YouTube video is a good condensation explaining a complicated topic. I think it is an excellent start.
Why Church Should Be Accessible
I talked to many parents. Most have tried church after church. Many gave up on ever finding a church home. Some of the children, scarred and confused by their church experiences, have given up on God. Not all have not turned away. There are those who continue to search for a place to belong, a safe haven to worship and fellowship with other believers. People they can call “brother”.
Some church leaders think church is for the majority, and they can’t afford to spend time making church available to everyone.
God has designed every person with a purpose. There is room in the body for every believer.
[tweet_this] God has designed every person with a purpose. There is room in the body for every believer.[/tweet_this]
Dr. Grcevich stated in the video that he believes God has a reason for the influx of students and people with Asperger’s and similar conditions.
Qualities common to people with Asperger’s are the tendency to be truth and knowledge seekers, be persistent in faith, have a strong sense of morality, be deep thinking, justice minded, and analytical, to have zero tolerance for hypocrites, and pay no heed to church politics.
Is there room at your church for these kind of people?
I felt the need to add to this post for clarity after some feedback from readers.
People with Asperger’s don’t need a special program. Dr. Grcevich explains in the video above that being funneled into the typical special needs ministry would not serve well and be completely inappropriate. What do they need? Respect, understanding, and a helping hand every now and then.
If this post resonated with you, please share it. Have something to add? Join the conversation by commenting below. I want to hear from you!
Side Note: I have focused my energy on writing a YA series that has a character with high functioning autism. Currently, all three novels are in the editing stage. One of them features an aspie romance. If you’d like to stay informed about my novels, you can sign up for my newsletter. It’s the second sign up box.
If you would like to be a beta reader, sign up for my newsletter and send me a message to let me know you are interested.
I liked Marcelo. I was immediately drawn into the book, Marcelo in the Real World, by the main character.
Seventeen year old Marcelo is diagnosed with something close to Asperger’s and attends a special school, Paterson. He doesn’t really fit in there, but he is comfortable and is hesitant to change to a mainstream school. His father, Arturo, has decided that Marcelo will spend his summer experiencing “the real world”. Marcelo will work in the mail room at his father’s law firm. At the end of the summer, a decision will be made about school.
Marcelo has his quirks, but is a kind and relatable hero. He faces many challenges. This is one of those books I read straight through. The story is told through first person and in the beginning Marcelo often refers to himself in third person, which is odd but not distracting and adds to the character. I do not know of any people on the spectrum who speak this way, but Marcelo does. Marcelo’s observations of his co-workers, situations, and people he encounters is interesting.
In the course of an assigned task, Marcelo comes across some information at the law firm. This information forces him to make some hard decisions about right and wrong that will have great impact on many lives, including his own.
Religions are said to be Marcelo’s special interest. I liked that Francisco Stork portrayed an autistic character who has deep conversations and questions about spiritual matters.
There was a few inconsistencies of behavior or thought patterns, it seems to me, but the story engaged enough that these incidents did not interrupt the flow of the story. Marcelo In The Real World explores many issues that are good for discussion. The book ended satisfactorily. It is a well-crafted work with strong moral questions and themes. I felt the portrayal of Marcelo was respectful and interesting. This is a thought provoking book.
In my opinion, the targeted audience for this book is too young.
I suggest parents preview the book. I feel this book is more appropriate for older than the intended or labeled age group. There are issues of discrimination, another worker’s inappropriate conduct toward female co-workers, questions of morality vs legalities, language, frank discussions of sex, and religious themes/discussions. At least one moment of irreverence. I listened to the book rather than reading and did not make notes of issues of concern so may have missed something.
I listened to the audiobook read by Lincoln Hoppe and found the recording and reading to be well done.
You can watch a video of an author interview here. This explains why the character seems a bit inconsistent as far as having an Autism Spectrum Disorder or Asperger’s.
Ghost Boy: The Miraculous Escape of a Misdiagnosed Boy Trapped Inside His Own Body
Martin Pistorious
“I didn’t have proof that He existed, but I believed in Him anyway because I knew He was real. God did the same for me. Unlike people, He didn’t need proof that I existed—He knew I did.”
Martin fell ill with a mysterious condition at age twelve and gradually lost the ability to move or speak and slipped into an unresponsive state. He was gone. Then Martin’s mind slowly ‘woke up’ but he could not control his body or speak. He could not tell anyone.
I found Ghost Boy: The Miraculous Escape of a Misdiagnosed Boy Trapped Inside His Own Body by Martin Pistorious well written and the style easy to follow. The biography is deeply touching, inspirational, and heartbreaking by turns. Martin writes about his struggles, dreams, frustrations, desires, and trials. His observations on life, human nature, and love often spoke deeply to me.
This is an emotional read. I had to put this book down several times but was constantly drawn back until I finished reading. Because of the subject matter, it was not always easy to read, but is well worth the time.
This is a story of resilience of the human spirit and of reclaiming life.
The ending is a happy, beautiful one.
SPOILERS
Martin is assumed to be in a vegetative state, but his mind has slowly been regaining awareness while his body remains unresponsive to his will. One caregiver sees meaning in Martin’s responses and if not for that one person, Martin may never have been released from his solitary existence, unable to communicate.
Part of the book talks about physical and sexual abuse suffered at the hands of his caregivers and is downright horrific.
This is a story that makes you think and wonder about how many people who are assumed to be in an unresponsive mental state may actually be aware. The accounts of abuse are disturbing and bring to light the vulnerability of those at the mercy of untrustworthy caregivers.
This is how you tell a story: First you introduce the main character. I’m writing the story about me, so I am the main character.
Rose loves homophones, and she loves her dog. Rain is the name of her dog, and that is his name because her father brought him home to her one rainy night. This got to me, because my dog Thunder was named Thunder because . . .
So she had me from the start.
I didn’t read long before the story sucked me in. The storytelling has a rhythm that I found easy to fall in to.
Rose has a passion for homophones, prime numbers, and rules. I found her likable and a bit heart tugging. Her father is ill equipped to handle a special needs child, and struggles to overcome his own experiences stemming from an abusive background. He is determined to not repeat his own father’s mistakes. Too often, he finds solace in drinking at the local bar. He does not understand Rose. Rose has an Uncle, Weldon, who often steps in and is a good influence in her life.
I saw the end coming and knew what Rose was going to do but could not stop reading. This is good story telling. I had to put the book down a couple of times towards the end, because I related too much to the whole kid and a dog thing. Yes, I am a sucker for those kind of stories. If you are too, you might like this book.
This book could be used to help children understand and gain empathy for those different from themselves. There are many possible topics of discussion. I would mention that not everyone on the spectrum has the same issues, needs, foibles, gifts, and personalities. As the saying goes, if you’ve met one person with autism, you’ve met one person with autism. I found the character of Rose believable and interesting.
For grades 4-6 or older
Issues of concern
Only parent is portrayed in negative light/not a positive portrait of a parent, in one instance father gets angry and kicks the dog, father drinks and spends time at the local bar, children at school tease and mock Rose, special needs, hurricane/flood, lost dog, absent mother
In part one I touched on parenting tips, behavioral issues, life skills and what I found to be the most useful character based curriculum for teaching my kids.
Support Groups for Parents of Kids with ASD
An invaluable resource, one you cannot do without, is asperger or autism support groups. Parents can provide you with much wisdom, insight, and encouragement. You may find various groups geared towards raising and teaching kids on the spectrum online and locally. I recommend finding both a local group that has meetings and an online group to take advantage of the wide variety of input. Most, if not all, local groups also have an online presence or an email group.
In regards to online groups, some prefer email groups to Facebook groups for privacy reasons. I have made use of both types of online groups. Parents who have been in the trenches can help you in more ways than you can imagine. Adults on the spectrum, especially adults who are now raising and teaching their own children with ASD, can give a unique perspective and provide effective problem solving strategies that may not typically be obvious to others.
I do not know how I would have navigated the difficult and confusing seasons without the wonderful moms and dads who were willing to share their knowledge and support. There is a reason I put this first here. You will need people. Don’t neglect to find your tribe.
[tweet_this]You will need people. Don’t neglect to find your tribe.[/tweet_this]
*If home educating, you may also wish to take advantage of your local homeschool support groups and activities. These can be found by doing internet searches or asking local home educating families.
Brain Training
There are a plethora of different products and services out there that fall under the category of Brain Training. Some people say these work, and others say save your money. The very first brain training program I ever heard of was Audiblox when I first began home schooling.
Beware of companies that offer brain training after they give you reduced cost testing. If the tests are not accepted by assistive agencies as legitimate, you may not be receiving an accurate assessment. Pay careful attention to the wording of the test descriptions and do your homework. Cheap, ineffective testing isn’t worth anything in the long run. It may do more harm than good, masking problems or misdirecting from the real issues and proper treatment.
We used a computer game called Earobics for auditory discrimination. One of my sons said it really helped him. This was the first edition computer software for older kids and adults I found many, many years ago. The company now makes more products in the line used in schools in addition to home versions. You can get Earobicshere.
Occupational Therapy-Sensory Integration Therapy
A program called Learning Breakthrough that seemed to have good results for my child who used it. We could not use the ball included due to latex allergy, but found an alternative. We used a plastic whiffle ball covered with a sock hung from a string! This program was easy to use and required no teacher prep. It is a structured occupational therapy program for sensory integration advertised as being useful for people and children with asperger’s, high functioning autism, ADD and learning difficulties.
The DVD speaks directly to the person using the program. The activities are actually quite fun and enjoyable. In my opinion, the product is quite sturdy and the instructions given on the DVD are clear and easy to understand. You can watch a video sample here.
Take A Swing Therapeutic Swing Sets
Here are some pretty cool swing sets for kids and adult sized people that are portable! These can be packed in your car trunk and can be used indoors.
There is no one size fits all approach to teaching high functioning kids on the spectrum, but I can tell you what has worked for us. Every curriculum needs adjusting, and every child has his or her own set of gifts, talents and needs. Add in the parent teacher’s preferred teaching style, belief system and materials available and every situation will be unique. I am listing a few resources I feel are of benefit to every parent teacher who has students on the high functioning end of the spectrum. Many of these apply in general to child rearing and training as well.
I am limiting my suggestions here, but keep in mind the best teachers are the ones who never stop searching for answers. It’s kind of mandatory, this flexible parenting thing. Kids have a way of changing on us as soon as we think we have stuff figured out.
How Can I Teach Them if I Can’t Even Control Their Behavior?
Parent and caregivers often spend a great deal of energy trying to control unwanted behavior. A better path, in my way of thinking, is to attempt changing the behavior by addressing the heart and motivation.
When there is a struggle, my first suggestion in teaching any child is to examine your current course of action. Is there another, better way to get the desired result? You could try Lori Petro’s Teach Through Love Teachable Moments youtube videos as a quick jumpstart. I have not deeply examined every single concept she has presented, but I have found that I agree with her general approach. She is a parent with Asperger’s raising a child with Asperger’s. These videos give some wonderful insights that can be applied by any parent or caregiver in their efforts to guide children.
The Explosive Child: A New Approach for Understanding and Parenting Easily Frustrated, Chronically Inflexible Children by Ross W. Greene PhD is an often recommended book. If you have difficulty in understanding or managing meltdowns or angry behavior, the ideas in this book may help.
[tweet_this]Considering the way your child with AS reasons out problems and approaches life can go a long way towards reaching them. If you can’t reach them, you can’t teach them.[/tweet_this]
What About Life Skills?
Another great common sense resource is the book How to Teach Life Skills to Kids with Autism or Asperger’s by Jennifer Mcllwee Myers. This is an easy to read book that I have found to be immensely practical and straight forward. The author of this book is on the spectrum and brings valuable perspective to the subject at hand.
What is the Best Curriculum?
It depends. There are simply too many variables. There is no such thing as a one size fits all program for any student. Each child has their own preferred learning style, capabilities, needs, and strengths. I have not used every curriculum out there on the market, even if it seems like I must have from the amount of materials collected and tried over the years!
What Worked Best for You?
My all-time favorite and most effective curriculum for our specific needs was KONOS. I used the original KONOS three volume set designed for K-8th and these are the books I am referring to. There are other KONOS products but I have not reviewed them so I am sticking to what I know here. We did not do every unit in every book. KONOS is a Christian homeschool unit study program.
Why KONOS? For us, the repetition of a unit organized around a character trait was exactly what was needed. Honestly, I muddled through at the beginning but quickly came to love the results. It truly did feel like a gift from heaven. KONOS integrates character training and academics in a hands-on structured way. I have used and perused a lot of curriculum in 20 plus years. KONOS is the only one that unified the wide variety of issues, academics, and skills I wanted to address.
We studied units that contained practical skills, speech making, literature, poetry, emotions, cooking, cooperative projects and much, much more all based around a specific character trait as a spring board. I started with Courage and we completed the entire unit, then moved on to Determination, Cooperation, and Self-Control. After we’d gotten through these, I did not do another entire BIG unit. Instead we would pick and choose from smaller units within the main category. We used KONOS for three consecutive years, including summers, and occasionally after that.
KONOS is a bit of work to implement for the teacher, but there are supports. KONOS covers all academic subjects except math. You may use the units as stand-alone units of study, adjusting them as you see fit. KONOS is also used for many co-ops. Although intended for use with two or more children, you can use it for an only child but will need to tweak the curriculum. This curriculum is very adjustable and can be used for a lighter or a more in-depth study.
KONOS is effective because it is a structured hands-on curriculum that repeats a core value for the length of the unit using various methods of teaching. It is NOT a social skills curriculum or a curriculum specifically designed for kids on the spectrum, but it sure did work well for us. Your child will need additional repetition for life skills and certain issues.
This is not THE ONE curriculum; it is only my personal favorite. It is not my favorite to prepare, but it is my favorite to actually teach and do.
KONOS has been around a lot longer than I’ve been homeschooling. That’s a long time, mommas.
You can find more information on the specifics of this curriculum at KONOS.com.
Today’s Parting Word on Teaching High Functioning Kids with ASD
Do not try to make every moment a serious teaching lesson.
[tweet_this] Yes, some kids need every.single.thing taught to them in excruciating detail with grueling repetition, but they also need you, just you. Spend down time with them.[/tweet_this] Do the fun or interesting things that they are into. Talk to them. Your child needs to know you respect and enjoy him or her as a person. And you need to take joy in being mom to an awesome kid.
Do you have a favorite resource or bit of wisdom to share? Please comment!
