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”.
CLICK here to Read More...
(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”.
CLICK here to Read More...
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…”
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.
End of Focused Excerpts
REFERENCES used in < My Thoughts > are:
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; V21, p285-301.
Harris, A., Pentel, P., LeSage, M. (2007). Prevalence, Magnitude, & Correlates of an Extinction Behavior; Psychopharmacology; V194, p395-402.
Sansosti, J.,Sansosti, F. (2012). Inclusion for Students with High-Functioning Autism Spectrum Disorders: Definitions & Decision Making; Psychology in the Schools; V:49.
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…”
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.
End of Focused Excerpts
REFERENCES used in < My Thoughts > are:
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; V21, p285-301.
Harris, A., Pentel, P., LeSage, M. (2007). Prevalence, Magnitude, & Correlates of an Extinction Behavior; Psychopharmacology; V194, p395-402.
Sansosti, J.,Sansosti, F. (2012). Inclusion for Students with High-Functioning Autism Spectrum Disorders: Definitions & Decision Making; Psychology in the Schools; V:49.
RSS Feed