Building in Circles: The Best of Autism Mom by Elizabeth W. Barnes, eBook 2014 Edition; with < My Thoughts > by Sara Luker
 
(8% indicates focused excerpt location in the Kindle version of the book, instead of page numbers.)

​Focused Excerpts from the book –
 
4%       My name is Elizabeth and I am an Autism Mom. Our son, who we call the Navigator, is nine and was diagnosed on the Autism Spectrum at the age of seven. Before his diagnosis, I had heard of Autism – non-verbal children who don’t like to be touched, who rocked, and who ritually lined things up.
 
7%       There is no one thing or even series of things that work all the time, or are even discernible as a pattern. There is a need for constant analysis and creativity, which is exhausting and sometimes seemingly fruitless.
 
Because there is no cookie-cutter approach, I developed a website and blog in case our experiences could help others.
 
8%       That website is Autism Mom and it includes blog articles, resources, tools and strategies. My hope is to offer other parents and loved ones of children with Autism valuable lessons learned and creative resources which they can use and tailor for themselves.
 
5%       Then came a call from his first grade teacher: “I am not a doctor or psychologist, but I spent 15 years in Special Education, and I think your son may have Asperger’s.” As the American Psychiatric Association describes it, his “symptoms [were] not fully recognized until social demands exceed[ed] [his] capacity.”
 
6%       After testing by both the school and privately, he was diagnosed to be high-functioning on the Autism spectrum. He receives special education services through the school.
 
14%     Never on a School Day…strategies for managing screen time…
 
We took away screen time on school days last year. For about four weeks, he had been fighting me about going to school and I had to (gently) drag him down the stairs…
 
15%     One day, I got him downstairs just fine, he put his shoes on, and then I had to go to the bathroom. When I got out, he had gone back upstairs and locked himself in his bedroom.
 
That was the last straw…
 
…he got 10-20 minutes screen time before school in the morning and 60-90 minutes after school every day. More on the weekend.
 
Something needed to change, and that something was the elimination of screen time on school days.
 
I engaged in “control and oversight of the screens.” The screen he most liked to use was my tablet…I deleted all of his games…so that it was not a temptation.
 
…we have only one TV in a central area which I can be aware of when it was used and I was happy to disconnect from the internet cable if I needed to.
 
< My Thoughts >       “…elimination of screen time on school days.”
 
Elizabeth has a lot of support on this decision, not just for behavioral control, but for control in general over a child’s health and lifestyle. Hamilton, et al. (2016) say that there are a number of beliefs behind this decision for parents of all children. Parents they studied believed the “Health behaviors may track across time.” Therefore, parents should intervene early in a child’s life to reduce the risk of the child developing an irreversible sedentary lifestyle of long periods of screen watching, into adolescence. This sedentary lifestyle possibly leading to their unhealthy weight gain, or even obesity, as they grow into their adult years.
 
In agreement are Anderson, et al. (2008) who state that prolonged screen time of more than two hours per day, combined with low-levels of active play, can lead to unhealthy pediatric development. They suggest that the parent also require the child to participate in high-level activities each week, such as swimming, going to the gym, sports, or other athletics.
 
I would like to add that, as early as 4th or 5th grade, students in public school in our district are expected to spend close to an hour on the classroom teacher’s online website. During this time, they complete classroom assignments and prepare for the next day’s lesson. In Middle School and High School, the time the instructor (Instructors… because now they have up to seven instructors each day, each semester.) expect the student to spend online, increases. That alone will cut into the ‘free’ screen time a child would spend each day, it seems; if parents follow the suggested time allotment of two hours per day.
 
16%     The third step was to be very clear with him as to what the new rules were – I developed visual checklist for school days and what he needed to do to get screen time on the weekend.
 
Fourth was to be very patient and loving as he “detoxed” from getting screen time before and after school.
 
39%     As his Autistic behavior became more apparent in the structured setting of elementary school, he began recognizing his own “not fitting in” and feeling discomfort about it.

One of our saddest days was when he called himself “stupid” because he could not do his work in the classroom.

60%     Wait, What? –

…I dutifully go to the school office and sign in and get a badge so I am an “official” visitor at the school.

…while I was signing in, my son walked into the office.

He was supposed to be in class, what was he doing in the office?

One of the assistants asked him why he was there. He explained that he had been misbehaving in class and the teacher had sent him to the office.

Wait, What?  There is specific language in the IEP* that he is not to be sent out of the classroom for his behavior.

41%     The “specials” teacher had sent him out of the classroom. Why isn’t the specials teacher following the IEP?

A couple of days later I got notice that an IEP meeting had been set, including the specials teacher.

42%     Wait, What? Why were we having an IEP meeting?

The meeting came and I learned that the specials teacher had not been given notice of the relevant accommodations in the IEP related to my son.

…None of the specials teachers had been given that information.

Wait, What? How can they do their jobs if they don’t have the information they need?

43%     The meeting went well as far as my son is concerned. The specials teacher now has the knowledge and tools needed to manage my son’s behavior in the classroom.
This meeting took place on the second to last day of Autism Awareness Month.

< My Thoughts >      “None of the specials teachers had been given that information.” “Autism Awareness Month”

My motto (one of them) is never to assume anything! As parents and as teachers, immersed in the world of autism, we sometimes tend to ‘assume’ that everyone out there is as ‘consumed’ with the subject as we are. That ‘they’ are operating from the same knowledge base that we are. Not so! And, many people prefer not to think about anything that deviates from the ‘norm’, especially ‘autism’. Just saying.

80%     Set up a preferred method of communication so the school can contact you. Setting up a preferred method puts the teacher-parent relationship on a ‘respectful footing’ for what works best for both.

44%     *An IEP is an “Individual Education Plan” and it is the document that outlines what a school will do and won’t do to insure that a student with a disability receives appropriate educational opportunities.

73%     Questions to Ask His Next Teacher –

…I am compiling a list of questions for that meeting.
When crafting questions, it is important to think about a) what my goal is, e.g., I want to         know what I need to do to help with my son’s education; and b) not to ask questions that      can be answered with a “yes” or “no”.

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Excerpts from All Because of Henry by Nuala Gardner, eBook 2013 Edition; with < My Thoughts > by Sara Luker –
 
(3% indicates focused excerpt location in the Kindle version of the book, instead of page numbers.)

Focuses excerpts to highlight Autism & SCHOOL...
 
3%       I saw my son emerge from the changing rooms, and my soul swelled. What a handsome grown man he had become! Remembering that lost and lonely child, that child who had spent days rocking in a corner of a room, unable to communicate or relate, I thought, Wow! Look at my incredible, handsome son now!
 
Dale chose the most expensive outfit on the rail – the designer suit. After much deliberation his dad and I decided that no matter what we would support him in his pursuit of his profession. He was returning to a system which had helped him be the person he was today, and that was huge.
 
6%       If only all the people to have involvement in Dale’s future would be as understanding and supportive of his achievements.
 
Amy’s quality of life and progress at school would have been very different, without her friends. Even in that very first year of school, that was apparent.
 
10%     As every mum knows, the beginning of school is a time of scraped knees, bugs and illnesses. Amy certainly had her fair share of all that. One week she was unsettled and unhappy, repeatedly telling me that she had a sore eye.
 
She insisted that her eyes were really painful. I drew on her obsession. “Amy, how sore is you eye? Is it a walk, trot, canter or gallop sore?” “Nuala! It’s galloping sore!” now I knew that she was in real pain. With Dale I had been able to use the colors and numbers of the Thomas trains to express his pain and anxiety levels.
 
She insisted that her eyes were really painful. I drew on her obsession. “Amy, how sore is you eye? Is it a walk, trot, canter or gallop sore?” “Nuala! It’s galloping sore!” now I knew that she was in real pain. With Dale I had been able to use the colors and numbers of the Thomas trains to express his pain and anxiety levels.
 
11%     With Amy settled into school, it was time to focus on Dale. We were determined to help him access college. When he qualified, he would have the same rights to employment as any others of his generation. But to get there, Dale had many more hurdles to overcome than most.
 
12%     As his parents we never subsidized Dale at all. He bought all his own clothes, DVDs and CDs. He paid for Henry’s food and insurance. He learned the value of money as well as how to manage it responsibly and quickly. He became adept at finding the best deals. Often, he’d comment on prices.
 
Some transitions are so simple – painting a classroom another color, a changed room layout, new furniture, a different teacher. Major transitions like leaving the familiar secondary school to the navigation of a big, college environment had to be addressed and planned months ahead.
 
Firstly, he had to cope with and integrate into a big college environment. I must stress that he needed the many specialized skills of a variety of integrated services. In those fifteen years since his diagnosis I had come across a very extreme range of professional abilities and aptitudes.
 
Dale needed to demonstrate that vital in-depth knowledge that he needed. A local transitional social worker helped with that. She ensured that Dale received the support he needed to transfer from school to college.
 
Her input was life-changing. With benefits in place and with Joyce’s support and Dale had a decent income for college. Her next task was to help him get a travel card for subsidized public transport use. This would allow him greater freedom, without worries about costs.
​
14%     Dale’s friends also attended the college. Scott, David and Matthew met up with him at breaks, and they would go into town together for lunch, just as they had at school. They formed a rock band, practicing in a local community recording studio.

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A Spot on the Wall by Martha Squaresky, eBook 2014 Edition; an Extended Review with < My Thoughts > by Sara Luker

(8% indicates focused excerpt location in the Kindle version of the book, instead of page numbers.)
​
8%   It remained for us to explore the system and find appropriate ways to help Greg. I now had to count on others.
 
< My Thoughts >      “It remained for us to explore the system…”
 
Again my point exactly about how, even today, parents are left to learn about how to deal with autism and the 'system', especially the school system.

“Decision-making about where a child with an Intellectual Disability, such as those with autism, will live as an adult is perhaps one of the most difficult issues families confront.”  “…U.S. mandated school services end at age 22, under the Individuals with Disabilities Education Act (IDEA). According to reports from social services, this is a particularly difficult period for families…”

Krauss, et al. (2005) tell us that, 

• Education & related services (finding programs to further educate them, similar to those previously provided by the school system)
• Relationships with professionals (finding & funding similar private programs, similar to those previously provided by the school system)
• Independence (concerns about finding vocational training & placement, plus leisure time services, similar to those previously provided by the school system)

The authors admit that unfortunately, only through ‘living the experience’ can one know how everyone will adjust and how they will discover who will benefit and who will not.

​< My Thoughts >      "...who will benefit and who will not?"

When Sonny was a 9-year-old, we persuaded the school district to try him in a more advanced school for their summer program (ESY) Extended School Year. I also had a position with that school, teaching an older group of children with disabilities. Because Sonny was non-verbal, non-diagnosed autistic, the principal had her doubts, but as it turned out… Sonny was recommended to attend that school in the Fall. Yea Team!!!! But, my point is that in this more ‘advanced’ classroom he not only blossomed, but he made some unexpected friends.  

58%     We needed to find a niche for Greg in high school by taking a careful look at his educational opportunities. …Special education classes or life skills… The words, “public education” have a collective connotation.  Individualized instruction was not in the job description. To go through due process for Greg took years.  We didn’t have years.
 
I met my match at the first teacher/parent conferences when the special education math teacher approached me, shook my hand and said, “Greg should not be here. He should be in life skills.” …She was resolute.
 
< My Thoughts > 
 
Reed & Osborne (2013) found in their study, that there were discrepancies between parent and teacher ratings of behavior of children with ASD.  Information about a child’s abilities was discovered through the completion of a questionnaire given to parents, teachers, and caretakers. They are asked to complete these questionnaires and then the information is compared. In the ones they used, they found that there was evidence, but not widespread, that the stress level of parents in their sampling was a factor in how their child’s behavior was rated by them. Another factor, yet to be explored, was the personality characteristics of the teacher / caregiver involved with the child.
 
As Sonny’s parent, this tells me that even though I perform honestly on an inquiry to rate his behavior, my concerns for his future will come through in my answers. I might describe him as, and make him look ‘more’ needy, because I worry that they will expect him to function independently. 
 
As a teacher of someone like Sonny, I may feel that some of the behavioral challenges he faces can be overcome, with the right programming (which I can provide). Or, depending on my classroom experiences, I may not be so optimistic and may want to spare the parent what I feel are false hopes about his/her abilities. 
 
There is also another component… the school principal. The principal has a staff and a budget by which to hire that staff. If Sonny… or, Greg requires a one-on-one aide to be with him in certain settings… like inclusion, then that becomes a factor. I have seen aides who were no longer needed, because their student had moved on, lose their position. But, if that aide is in a school where a new student needs an aide with that specific kind of training, then problem solved. Or, if the principal has to ‘find’ funds to hire someone as a one-on-one for that child… then you see the hidden dilemma.
 
59%   I wanted inclusion. Was there anybody who would listen and continue to educate Greg in a regular education class?
 
The music teacher listened. The art teacher listened. Greg’s remaining inclusive classes were non-academic courses. Not core (Reading, Writing, & Math).
 
Producing works of art independently was out of Greg’s reach. Greg demanded assistance on every task. He produced beautiful pots, clay faces of all his favorite Sesame Street characters, and paintings. 
 
With help, Cindy encouraged Greg’s talents, never admitting defeat. She focused on the whole child, working on his socialization and behavior. 
 
I had to change my expectations. Too many obstacles. I fought for my son until the fighting was done. Although I prayed for a miracle cure, it was not going to happen. This was not a common cold. Greg had autism. We moved him to a life skills class.
 
< My Thoughts >     “We moved him to a life skills class.”
 
Actually, in the school systems where I have taught, the life skills class is where they implement the use of communication devices, introduce social skills, and show videos of behavior to model to. So, I see moving Greg to life skills class as a good thing. But again, it depends on the resources and programs available… and so on. My advice would be to visit the classroom frequently to see how he is doing.

Teachers can always arrange to have you ‘hide’ behind a screen or partition, so as not to disrupt the process. And of course, you don’t want your child to be ‘warehoused’ there and not have other opportunities for academics. If all you can get your principal to agree to is to ‘allow’ your child to attend Art, Music, and PE, then that’s a step. The atmosphere in those classes is usually more relaxed… and, requires use of different parts of the brain. So, even though it is not a core curriculum the child is offered, it is still a form of inclusion with ‘neuro-typical’ peers. You have to pick your battles.  Smiles.
 
Lai, et al. (2012), “Despite language disabilities in autism, music abilities are frequently preserved. Paradoxically, brain regions associated with these functions typically overlap…”  making it possible for learning musical pieces. Especially songs.

REFERENCES used in < My Thoughts > are:
​Krauss, M., Seltzer, M., Jacobson, H. (2005). Adults with autism living at home or in non-family settings: positive and negative aspects of residential status. Journal of Intellectual Disability Research; V49, p111-124.
 
Lai, G., Pantazatos, S., Schneider, H., Hirsch, J. (2012 ). Neural Systems for Speech & Song in Autism. Journal of Neurology; V135:3, p961-975.

Reed, P. & Osborne, L. (2012). The Role of Parenting Stress in Discrepancies Between Parent and Teacher Ratings of Behavior Problems in Young children with Autism Spectrum Disorder -(ASD). Journal of Autism Developmental Disorders, V43, p471-477.

​< My Thoughts >     These are Focused Excerpts about SCHOOL in the hopes of creating a better understanding about this topic and Autism. Smiles.

Someone I’m With Has Autism by Carrie Cariello & Jordan Capell, eBook 2015 Edition; an Extended Review with < My Thoughts > by Sara Luker 

(7% indicates location in the Kindle version of the book, instead of page numbers.)

Focused Excerpts from the book –

7%       One big development stands out above the others: the kids know about Jack’s autism. And Jack knows about Jack’s autism. In some ways this has redefined the dynamics of our family.

We love autism. But Jack? As you’ll read, he’s not as impressed with autism as the rest of us are.

8%       Jack himself is just learning about his own diagnosis, a discovery that has been both painful and astonishing to him.
 
“Oh no!” Jack shrieked from where he was standing at the kitchen sink. I rushed over and saw one of Joe’s dark blue mugs, now missing its curved handle, broken when Jack had tried to rinse the hot chocolate out of it.
 
“I broke it, I broke it, I BROKE IT! I broke Daddy’s mug,” he yelled, holding his hands on his ears.
 
I didn’t know what all of the fuss was about. We have something like nine hundred and ten of these cobalt blue mugs, each emblazoned with the name of Joe’s dental practice, and frankly I’d like to break a few more so I’d have an excuse to by the white ones I’ve been eyeing at Pottery Barn.
 
9%       I promised that his father would absolutely not be upset, then tried to soothe him by pointing to the rest of our mugs in the cabinet – and on the counter (and in the garage).
 
“But he LOVES them all!” he whimpered.
 
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