building In Circles ~ The Best of Autism Mom by Elizabeth W. Barnes, eBook 2014 Edition; with < My Thoughts > by Sara Luker

​Building in Circles: The Best of Autism Mom by Elizabeth W. Barnes, eBook 2014 Edition; an Extended Review with < My Thoughts > by Sara Luker

Excerpts from the book – (4% indicates location in the Kindle version of the book, instead of page numbers).

Excerpts from Elizabeth's book –
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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.
 
5%       My son had none of these characteristics, so when he started having difficulties in pre-school interacting with other children, transitioning from one play area to the next, following instructions from teachers and staff, I didn’t initially think “neurological disorder.”
 
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.
 
Within a year after the diagnosis, I quit my full-time job to stay home and provide him structure and support. It was a relief to no longer feel like his behavioral issues were the result of bad parenting or something we were doing wrong.
 
Now when he melts down or perseverates I can (most of the time) calmly help him through it and not cry afterwards (most of the time).
 
< My Thoughts >     “ he melts down or perseverated…”
 
Meltdowns for children with autism are different than the meltdown of a nuclear reactor, but not much. The child begins to rumble or mumble… “want to go” or “go now.” Next the child may start pulling away or begin excessive stimming; then they begin what seems to be a ‘fight or flight’ situation. What follows may be running and screaming, hitting, self-abuse, or any other show of being terrified and in crisis. A very noisy event, although some say they have little or no recall of the event and may even be upset when they find out how aggressive they have been.
 
What perseverating may look like would be for the child to continue to have an adverse reaction to a noise, an action, or some undesirable stimuli… long after that stimuli has ceased. They may be unable to bring themselves out of prolonged stimming, even though the stimming isn’t calming them.
 
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.

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Troodon – Navigator’s  favorite dinosaur..

​18%     Like many children on the Autism spectrum, our son is very into one thing, and has been for years. Some children with Autism are into trains or baseball cards or manual typewriters. Our son is into dinosaurs.
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​19%     With creativity, we can lead him to expand his interests from dinosaurs to another related area of interest, and then to another, like concentric circles. Expanding his interests helps us not only show him the richness of the world; it also provides an opportunity to share social lessons.
 
20%     He has been able to move from dinosaurs to other extinct animals – mammoths and mastodons, saber toothed cats, dire wolves, etc.
 
…he has been able to move some of his interest into living sea life, such as whales and other sea mammals. He has also moved somewhat into an interest in birds because the theory is that dinosaurs evolved into birds.
 
22%     This does not mean that he goes far from dinosaurs. The dinosaurs are always there, and we do not discourage his returning to them when he wants. 
 
Thinking of concentric circles, we want him to be free to push the boundaries of his interests to new arenas when he feels he can, and support his retreat to the familiar and comfortable when he needs.
 
29%     Three Parties – This is the story of three parties and what we learned from them. The First Party: He went to the birthday party of a friend from his second grade class with 10 or so eight and nine-year-old boys. He said he wanted me to drop him off, instead of me staying there, even though he had never been to the house before. I was OK with that and quietly proud of his bravery.
 
The first call we received was that he jumped off a retaining wall and hurt his foot.  …His foot appeared fine, we oversaw him putting ice on it, and we left…
 
30%     The second call we received was because he got hit in the face during rough-housing with the other boys.  …I think it frightened him a little. I decided to stay.
 
When it was time to leave, he started kicking and hitting things in the backyard. He said that the boys did not like him…I had been there for a while and did not see any signs that the boys did not like my son or that they did not want to play with him.
 
31%     Between the pain in his foot, the shock of being hit in the face (even accidentally) and the stimulus from the noise and activity, I was dragging him out of the house in full meltdown.
 
Yes, people saw my son melting down and me wrestling with him on the curb next to my car.  Did I care? Nope. If they understand they don’t judge and if they judge they don’t             understand. Either way, it did not matter to me.
 
32%     A woman came out of the house and I asked her if she could get us some juice…I had not thought to bring some with me.
 
I think it is the sensory stimulus of the feel of the liquid and the coldness, and the smell and taste of the sweetness, which kind of resets his brain from the meltdown back to where he can be reasoned with.
 
< My Thoughts >     “…resets his brain…”
 
Often interruption and redirection, during compulsive behavior or social anxiety, can bring a child back from the brink, so to speak. 
 
32%     I asked if he was OK and he said “no” but he was not fighting anymore. I got him into the car while his dad went into the house to find my purse and our son’s glasses.
 
While we were waiting we started talking about how it is hard for him to read people’s facial expressions, and to see that these boys actually did like him and wanted to play with him.
 
As if to prove my point, one of the boys knocked on the window and as I rolled it down, he said good-bye to my son and “See you on Monday!”
 
I am so grateful to that boy!
 
34%     The Second Party – The next party he was invited to was at a local arcade. We were concerned that all of the lights and sounds, as well as the natural energy of a party, would be overwhelming.
 
There was also going to be laser tag, which takes place in the dark with loud music and a lot of flashing lights, and which could trigger anxiety and overload.
 
We wanted him to be able to enjoy the experience, so our preparation took place in three steps.
 
First we took him to the arcade a week before the party so that he would be familiar with the environment. We walked him through it on a Sunday afternoon, when it was less crowded, and talked about the sounds, lights flashing, and a lot of people moving around.
 
35%     The second step took place on the day of the party. Before we left, I walked him through some likely scenarios and what he should do:
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• If he started getting overwhelmed? Find Mom or Dad for some quiet time outside.
• If another child wouldn’t give up a game that he wanted to play? Take 5 deep breaths, in through the nose, out through the mouth, walk away and come back to the game later.
• If a child pushed him away from the game he was playing? Take 5 deep breaths, in through the nose, out through the mouth, and find Mom or Dad to help.

The third step was that his dad went with him into the laser tag room, not only to help him manage his anxiety and potential sensory overload, but also just to have some fun father-son time!

36%     The Third Party – The lesson learned from this party was not of steps needed to assist our son in doing what he wants to do. It is a more simple lesson, one of love and friendship.

We were invited to a friend’s 50th birthday party. It was to be a large event with both children and adults attending.

This friend, knowing of our son’s diagnosis and some of the challenges we have experienced, sent me an email with the details about the party…

37%     There are no words to convey how deeply touched I was by this kindness, this simple act of love and friendship.

The lesson is this: Let your friends help you. Let them know what you need and let them give it to you. Then value and honor them because they are a blessing to you.

His Changing Vision – We have reached a new milestone and it is, like many things in parenting, bittersweet.

38%     He intellectually knew there was this thing called “friends” but he did not intuitively understand it. His first friendships were with very patient, caring children that were comfortable following his lead and didn’t mind that all he (very authoritatively) talked about was dinosaurs.

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.

40%     Several weeks ago he came to me, unhappy, and said he was being bullied.

I asked him if he wanted me to talk to his teacher, and he said yes. I told him I was going to need some more information and asked him to tell me who it was bullying him. He said it was a lot of children.

41%     I was perplexed. His classroom is somewhat small, his teacher incredibly active and aware of what is going on at all times, and children are never in the classroom without an adult.

Then it dawned on me.

My son was not being bullied, not in the commonly understood sense. He was seeing something new.

There were facial expressions, body language, and non-literal language that he recognized as other layers of communication that he could not follow.

This made him feel uncomfortable and scared…he concluded that this was bullying.
…I am convinced that my son’s vision of his world has changed.

42%     I am sad because it is yet another layer of work for him to figure out what comes naturally to most people, and sad that it will cause him additional frustration and anxiety.

I know he can do this and he will succeed, but sometimes I can’t help but wish his road was a little easier for him.

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”.

74%     What do you know about Autism? …I have learned that understanding what Autism means in their classrooms on a day-to-day basis can really vary. The more I know about the teacher’s level of knowledge, the better I can meet the teacher where the teacher is and fill in the gaps in understanding, in turn helping my child succeed in that classroom.

75%     What do you think is the most important classroom strategy for a child on the Autism spectrum?

This is kind of a trick question. Since children can come from all over the Autism spectrum with very different combinations if issues, the answer really should be “whatever best serves the needs of the child.”

However, if the child with Autism is in the general education classroom, there are likely to be some common themes such as sensory (sensitivity to sound, light, movement), social (difficulty seeing and following social rules, or seeing social cues), executive function (planning and getting started on tasks, perseveration), and anxiety.

< My Thoughts >    “…the child with Autism is in the general education classroom…”

Sansosti & Sansosti (2012) write that children with Asperger’s demonstrate the capacity to attend general education classes. However, this is not a mild disorder requiring only minimal educational support, due to the severity of their social skill limitations. For this reason, there is increased risk of being socially isolated and demonstrating mood, anxiety and depression problems, if the student is left on his or her own to navigate in an inclusion setting.

The authors go on to say that “Inclusion of students with autism is usually considered as the primary form of treatment or intervention; as well as to meet the requirement of ‘the least restrictive environment’.” Keep in mind that this may not take into consideration how the IEP goals will be met in that setting. Nor does it offer behavioral support or instructional considerations. But, you may be able to find ‘common’ goals, such as coming to class on time, following classroom rules, etc.

And, the authors remind us that ‘true inclusion’ does not allow for an ‘instructional aide’ to accompany the student, but requires ‘independent functioning’ of the student. Be clear on whether or not there will be a modification of this, such as someone to get your child checked into the class and picked-up, after class is over. May also want to modify the plan to allow the ‘helper’ to get any assignments or instructions for the following day.

Also, along with the authors, I would like to add that there are no accepted ‘Best Practices’ but at the most, only ‘Differentiated Instruction’ offered in the general education classroom, to guide those teachers. One size does not fit all for instructing both general education and special education students.

And, some days (often many days in some school districts) the teachers have their ‘use it or lose it’ allotted days off when an unaware ‘substitute’ teacher is sent into the classroom to teach for the day or for several days. This person is rarely informed as to the levels or needs of the students they are working with, because it is a ‘general education’ classroom. 

Added to that, the final ‘line’ is drawn upon the availability of personnel and the resources that each school is willing to dedicate to this ‘one’ student… just saying. Smiles.

(‘Differentiated Instruction’ is an educational framework or philosophy said to be designed to provide for different learning styles, so different learning abilities can better absorb the content presented. Flexible grouping and ongoing assessment is also part of this instructional approach. In my experience, this method ‘identifies’ students with more pronounced learning problems and refers them for further assessment. Not the other way around.) You may want to find out how this works in your particular school.

75%     I would hope to hear examples of the teacher’s experiences with managing those common issues. I would hope to hear the teacher talk a lot about closely reviewing, understanding, and following the IEP and working collaboratively with my son’s IEP and speech teacher.

76%     What behavior management strategies do you use in your classroom?

This can be incredibly crucial – generally, teachers are trained to use behavior management techniques that work well with children not on the Autism spectrum – rewards and consequences-based strategies. These do not work with children with Autism.

When children with Autism act out behaviorally, it is because of a trigger that needs to be resolved (sensory overload, perseveration, anxiety, etc.).

…I would hope to again hear the teacher talk about following the IEP and working with my son’s IEP case manager and speech teacher to resolve behavior triggers.

77%     Sending my son out of the classroom for ‘behavior’ problems is not only counter-productive, but it will also be in violation of his IEP.

< My Thoughts >     “…rewards for appropriate classroom behavior…”
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If a child wants to earn classroom rewards which are available to other students, how can the teacher modify the program to accommodate the Navigator’s strengths?

79%     The concern for me comes in that teachers also offer advantages to the Self-Managers in their classrooms. I need to know what those are so that when my son sees the advantages, he does not get discouraged, anxious, or perseverate on a perceived injustice. I can remind him that if he wants to earn it, we can work on that.

<My Thoughts >     “Self-Managers.”  

A teacher I’ve seen uses a visual of a teacher-made racetrack, covering one large wall in the classroom. Each student is given a racecar to color and design.  There are many reward and consequence-based strategies which places the student’s racecar on or off the track. For example, a passing test score can place the racecar on the track; advance its position, etc. A classroom infraction can cause the student’s car to have a flat tire, run out of gas, or be sent to the garage for repairs.

As you can imagine, this could set some students up for failure. He or she could be easily devastated if they weren’t advancing with the top ten, thus possibly triggering a behavior. Or worse, even an anxiety towards the classroom, itself. Because, first of all, they would need a concept of racecars and racetracks, as well as the understanding of an abstract concept of advancing in the classroom means winning on the racetrack, and vice versa. Secondly, they would need a different set of goals than the general education students. Goals tied to their IEP goals.
Or, this is where the Navigator might “perseverate on a perceived injustice.” 

So, in the general classroom, a student following an IEP would have a very different set of goals from the other students. Just to ‘stay on task’, ‘place their work in a teacher basket’, or become ‘engaged in a group project’ may be a winning move. A lot of work would be involved to create an atmosphere of success for the student whose visual cue when he or she walks into the classroom, is that huge racetrack on the wall. Also losing points would need to be approached very carefully and fully explained ahead of time, in order to prevent a meltdown or a perceived injustice. Just saying.

84%     I read a lot of blogs by others, parents of children with Autism. I gain so much from their collective wisdom, patience, and shared experiences. Whether our children’s respective Autism expresses itself similarly or dramatically differently, there is always something to learn and respect from these amazing parents.

85%     Some parents are scared and their posts are of those scary experiences and I could barely read it to the end. Because I am scared, too. All the time.

I am scared about what’s going to happen next. Many parents whose blogs I read have had challenging issues which come up unexpectedly.

Some experience adolescent regression where the child seems to lose many skills and abilities; or adolescent aggression where a child much larger and stronger starts physically reacting with meltdowns again.

87%     It is the unexpected of Autism the unknowns of the diagnosis that frightens me. I live in a world of possibilities, probable and improbable, glorious and terrifying.

90%     Being an Autism parent can be a very lonely thing. There is little true camaraderie with other parents. Very few truly understand.

97%     For more, please visit Autism Mom at www.Autism-Mom.com. I am a big proponent of sharing information and believe that as a community we are stronger and more effective working together than separately.

End of excerpts from Elizabeth's book -

<My Thoughts >     Building in Circles contains life lessons from one mom with one child on the spectrum. Elizabeth Barnes, aka Autism Mom. She uses social media to come up with talented and genuine articles in order to find strategies for her son. In 2013, she sets about gathering ideas which she can tailor to meet the needs of her son, the Navigator, as she continually attempts to unravel his diagnosis. 
 
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REFERENCES used in < My Thoughts > are:
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Anderson, S., Economos, C., Must, A. (2008). Active Play & Screen Time in U.S. Children Aged 4 to 11 Years; Bio Med Central Ltd.;471-2458/8/366.

Hamilton, K., Spinks, T., White, K., Kavanagh, D., Walsh, A. (2016). A Psychosocial Analysis of Parents’ Decisions for Limiting Their Young Child’s Screen Time; British Journal of Health Psychology; 21, 285-301.

Harris, A., Pentel, P., LeSage, M. (2007). Prevalence, Magnitude, & Correlates of an Extinction Behavior. Psychopharmacology; 194:395-402.

Sansosti, J.,Sansosti, F. (2012). Inclusion for Students with High-Functioning Autism Spectrum Disorders: Definitions & Decision Making; Psychology in the Schools; Vol:49.

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