Focused Excerpt on Autism & the LAW
 
101 Tips for the Parents of Boys with Autism (2010) & 1,001 Tips for the Parents of Autistic Boys (2015), by Ken Siri eBook Editions; Extended Review with < My Thoughts > by Sara Luker
 
(23%/100 & 5%/1,001 indicate location in the Kindle version of the book, instead of page numbers.)
​
23%/100          Get your non-verbal kids an iPad. This can be  a game changer.  There are several great communication apps now available, including Proloquo2go, AutisMate, and Avatalker (www.avatalkeraac.com).   You can even get your local Board of Education to cover the cost of the device, including any future damage, protective covers like OtterBox.

Before the iPad came along, Alex had to rely on gestures, approximations, and PECS images to communicate his needs and wants.  Alex would frequently melt down and even turn aggressive towards himself as he became exasperated with his inability to convey his requirements.

24%/100          Once your child is confirmed non-verbal or would benefit from a device, as stated in his IEP, then the BOE or Medicaid is required to cover the cost.  The IEP can state that he requires a “Dynamic Display Speech Generating Device”, which an iPad with apps can function as.

25%/100          The IEP meeting includes yourself, your son’s teachers, various school representatives, and a parent representative.  You can bring your own specialists and support folks to help you in any way (moral support, reminders, etc.)

92%/1,001       Don’t wait until the legal age of the school’s transition plan to start transitioning you child into increasing responsibility and independence.  The kids will not willingly go along with this plan to do more, but set an expectation and reward small (very small) steps toward the accomplishment.
 
The adult world is unaccommodating – a fact that is hard to face for everyone, but is particularly so when our special education teams have tried to serve our kids by accommodating to their disability. 
 
Prevent the IEP team and yourself from making decisions that always keep your child comfortable and in control of what he wants to do.  …the world frequently does not offer “comfortable” options.

< My Thoughts >    Individual Education Plan (IEP) thoughts…
 
Absolutely, the parents, guardians, and other caregivers should bring their team to the table.  As a parent myself, attending my first IEP for Sonny, sitting at a huge table with strangers was intimidating, even frightening.  All of these ‘professionals’ sat there like crows lined up on a fence, while I was made to feel that any minute I would be under attack. I’m exaggerating… but for first-timers… even for me as an educator… it’s pretty intense.
 
Because parents have an intuitive sense of what will work for their child, they should be prepared to bring support in those areas which are already working for them.  If your child is doing well with certain programs carried out at home, then that provider should attend the IEP meeting.  Especially if you want to have any current intervention made part of the child’s school program. 
 
Now from a ‘teacher’s’ point of view. As one of the child’s teachers, I created the first part of the IEP to ‘paint a picture’, describing how we as a team see the child.  If you as the parent disagree or don’t understand the jargon on any part of that assessment, speak up!  I create the IEP document at the computer so I could be ‘friendly’ about making any changes. 
 
When it comes to the child’s education, parents and professionals can take more of a team approach.  Speaking as a special education teacher, I bring a team to the table.  This team consists of the principal or surrogate, school psychologist, school nurse, various school therapists (Physical, Occupational, Speech/Language, Adaptive Physical Education teacher, and if needed… Vision specialist, social worker, and mental health personnel; vocational specialists for the older child.).  Also, the school Special Education personnel, teacher, aides, facilitators; plus a general education teacher who can speak to the class requirements, accommodations, etc. 
 
Everyone at the meeting should have a ‘draft’ of the proposed document.  Back to the parent team… you can bring basically anyone you feel knows your child and will help you process what is ‘really’ happening and being said.  Ask for a break; say you need more time (within reason… sleep on it…) before you sign this legal document.  Ask for another meeting in 3 – 6 months, if you feel pressured into agreeing with things you’re not sure of.  Keep in mind that the severity of the autism may limit what the school is willing to agree to.  Ken has addressed the IEP process in both of his book… check further.  Smiles.
​=====

Autism Goes To School, by Dr. Sharon Mitchell, eBook 2017 eBook Edition; an Extended Review with < My Thoughts > by Sara Luker
 
< My Thoughts >  This is a fictional account of how one family finds an equitable solution to marriage, divorce, remarriage and loving a boy with autism. I believe it is a story that rings true and indeed, needs to be told. A story told by Ben, who is meeting his 5 year old autistic son Kyle for the very first time. A story of discovering what it means to be a single parent, and a parent of a child who sees the world in a different way. Through the eyes of Ben, we get a glimpse of both the challenges and joys of parenting this child. Smiles.  
 
Focused Excerpts from the book –
 
Extended Review with < My Thoughts > by Sara Luker  (Note: This is based on fictional characters.)
(13% indicates location in the Kindle version of the book, instead of page numbers.)
 
8%       Autism is not a dirty word. It’s a different way of viewing the world. There are challenges involved in autism, for sure. But, there are also strengths.
 
10%     Kyle’s kindergarten teacher was teaching him how to play chess. Is this really what five year olds did these days? Shouldn’t the teacher have her students kicking a ball or playing in a sand box rather than teaching them chess?
 
< My Thoughts >     “Ability to play chess and concentration.”        
 
Peer reviewed studies about teaching children to play chess, checkers, and other board games are few. How this would help the child with Asperger’s? Hopefully, the child would be absorbed enough in the game to sit quietly and observe, a great skill for school, the workplace… or, anyplace. In addition, they may even try to figure out what the other person is ‘thinking’, a kind of ‘mental aerobics’ for a person with autism to understand and master. Maybe these would be more socially acceptable skills and a welcome addition to playing videos or video games in isolation. Just saying.
 
12%     Kyle was at school. Four little words. That sounded so simple but hell, it was not. Getting one small boy up, ready and to school took more organization skills than Ben certainly possessed. He ran a business with ten employees, handled million dollar accounts, but could not manage one small boy.
           
13%     “Routine is so important to kids like Kyle. Look. When you have autism, the world can be a scary place. It can seem that things come at you from all sides. You’re contending with the sensory issues when every touch, every sound, every light can feel like just too much,” Kyle’s teacher admonished Ben.
 
She continued, “Remember that teacher in the old Charlie Brown movies? The one who went, ‘Wa, wa wa wa wa’ and we had no idea what was said? That’s how it often is for kids with autism. They not only have trouble understanding us… but they have trouble letting us know their wants and needs.”
 
“And, there’s more. Most of us automatically see patterns and connections in the world and our daily lives. Not so with many kids with autism. They have to be directly taught that there are patterns and consistencies and you can predict what is going to happen. When you can do that, the world is not quite as scary a place.”
 
15%     She tried again, “Look, I’ll try to explain. Kyle is a visual learner, rather than an auditory learner. Kyle can take in information he sees much better than what he hears.”
 
16%     “Look around… our classroom runs on routines. These routines are taught using pictures. There are pictures all over the room.”

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Autism Belongs, Book 3 in School Daze Book Series, by Sharon Mitchell, eBook 2015 Edition; an Extended Review with < My Thoughts > by Sara Luker  (Note: This is based on fictional characters.)

Focused Excerpts from the book –
 
Extended Review with < My Thoughts > by Sara Luker  (Note: This is based on fictional characters.)
 
(9% indicates location in the Kindle version of the book, instead of page numbers.)
 
9%       “Let’s go for a walk.” Tomas knew that his wife had been cooped up in the apartment for far too long. When Manny was younger, she used to take him out often, but as he’d grown bigger and stronger and more unpredictable, it was no longer safe for her to go out alone with him.

They walked the same route every time – had to. Any deviation bothered Manny so badly. When he was younger, he’d throw himself to the sidewalk, flailing and wailing if they tried taking a different street. Tomas would simply hoist the screaming child over his shoulder and they’d head home. Now that Manny had some size on him, this was harder to do. Plus, strangers looked at a tantrumming two year old in one way, but a half grown child doing the same thing was an entirely different matter.

10%     Immediately, Manny’s arms came up at his sides, his hands elevated and that keening noise started in the back on his throat. His parents knew what this meant. Manny might not speak, but he communicated, for sure. At least, sometimes.

< My Thoughts >       “Communication…school age”

Franco, Davis & Davis (2013) believe that because children with autism don’t develop early ‘intentional’ communication skills, they will develop flapping and challenging behaviors such as hitting, as they grow older. They say that the older child needs to be taught three important communication behaviors: vocalization, eye gaze, and gestures. They are considered the basic components of prelinguistic ‘requesting’ and ‘commenting’ acts. That older children who may never develop complex spoken language can still increase a beneficial, clear consistent means of communication. Studies show that there are positive outcomes for communication treatment planning with older children.

10%     “All right, son. I understand. Papa made a mistake is all. We’ll go straight.” He pointed down the way they had originally been heading. Manny’s noises stopped and he walked ahead of his parents on what he knew was the correct path. Tomas grabbed Maria’s hand and gave it a squeeze. “Just hang loose and it’ll be all right. Show him we’re relaxed and we’ll walk right on by.”

14%     Mel tried to explain. “Kids with autism take in things that they see easier than things that they hear. That’s why a story like this helps – the child does not just listen to what we’re saying but they see the visual of what is happening.”
“Kids with Autism? Oh, that’s not our Manny.” 

It was Mel’s turn to look skeptical. She raised one eyebrow. “Where does he go to school?”
“He is not in school. He stays home with us.”
“May I ask why?”

“He is not like other children. He gets upset and he, well, he doesn’t talk.”
“I understand that he does not speak and that he might get upset, but that does not mean he can’t go to school.”

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Hello, My Name is Max and I Have Autism by Max Miller, Extended Review with < My Thoughts > by Sara Luker

Focused Excerpts about SCHOOL & AUTISM...
​
52%   The classroom is really hard for someone like me.  (The book shows a drawing titled, The Classroom.) One of the waves might be a classmate going against me or saying something mean to me.  Another wave is the assignment but kids are distracting me and I miss the instructions.
 
< My Thoughts >       “the words get stuck” 
 
When Max says the words get stuck… takes me back to what a neurologist first told us about Sonny.  “It’s difficult to know just how much he really understands or is capable of learning.  So, your job is finding a way to get as much information “in” and as much information “out” as you can,” she suggested.  
 
Aside from the fact that Sonny is non-verbal, and we were told he would never learn anything, this seemed like a daunting task.  Although the part of his brain dealing with language has never developed, he has communicated with primitive ‘signing’, by dragging us to what he wants, and by using his eyes to stare at objects he wants, or to indicate directions he wants us to go in. Over the years, we have found that he is capable of learning and functioning to a higher level than anyone would have first guessed.
 
45%   I want to be a voice for every single child who has autism and who cannot speak.  The kids who can’t speak are just like me.  We are not like everyone else.
 
We can’t see other people’s feelings or do well in school or pay attention.  Just because we can’t be like everyone else doesn’t mean we don’t matter.  We do matter.
 
All we need is a little compassion.

53%   My anger bubbles up.  This is the blue – my frustration with the drama in my classroom.  I have to read and write and listen all at the same time.
 
The black is my brain core.  It’s really dark.  When I am in a good mood, it’s white and green but when I get upset, it turns black.
 
I feel upset sometimes in the classroom.  My stomach hurts and I want to go home.  I feel overwhelmed and small.  I just want to shrink down and vanish.

57%   Sometimes I feel frustrated when I get an assignment but I have no idea what it is about.

Since I have autism, I get pulled out of my class for tutoring and therapies.  As a result, I miss the instruction.  So I get my assignments when I get back and have no clue what to do.
 
< My Thoughts >      “Since I have autism, I get pulled out of my class for tutoring and therapies.”  
 
As a special education teacher and part of a team whose members include the child’s tutors, specialists, and therapists, I tried to prevent having students pulled from core classes.  
 
Many times we can squeeze these “pull-out” sessions in when the student goes to Specials.  Specials are the hours when all students go to Library, P.E., Art, or Music time.  These Specials are scheduled daily to allow the teachers their mandated lunch, break, or Teacher Preparation Time, i.e., Lesson Planning Time.  
 
Taking a student out of class during Daily Specials is the least intrusive time to pull a student from academics for scheduled therapy sessions, if it’s only done 2-3 times per week.  So for instance, if the Speech Therapist needs a half hour with your child, the time will be taken from Library (for elementary students), P.E., Art, or Music time (for secondary students),   Then the student is not missing core academic time.  
 
58%   It drives me crazy and I get really frustrated.
 
I hate getting frustrated because it feels like I am hurting someone’s feelings.  I don’t want to hurt anyone.  That is never my wish. 
 
Sometimes I just need to walk away.
 
< My Thoughts >       “Sometimes I just need to walk away.”
 
Almost all students need the opportunity to signal that they need a break, and same goes for the teacher/tutor/therapist.  Stress and frustration are our enemies, I think.  As a parent and teacher, try taking time to refocus, regroup, and then try again to give ‘it’ your best shot. 

If taking a break doesn’t work then there’s always tomorrow.  Just because ‘it’ is on ‘our’ agenda, doesn’t necessarily make ‘it’ something the student thinks he/she needs or wants to do this minute.  That doesn’t mean ‘it’ will never happen, it just means it’s not happening right now.
 
77%   My family has my back.  So I’m lucky.

I have my dad who wants me to do well in school and go to college.  My mom encourages my art and music.  My grandparents have always believed in me and I have friends, teachers, and lots of aunts and uncles who cheer me on.
 
79%   My parents are the best.  They didn’t give up on me, even when they were told by doctors that there wasn’t any hope.
 
My mom said that she saw light in my eyes.  She knew I was there.  I know what she is talking about.  I see it too, in the other kids.  By that, I mean the kids like me.
 
It’s hard.  I know, to be around kids like me.  But please, give us a chance.  Don’t give up!  And to kids like me, just be yourself.  That is what makes YOU!!! 
 
80%   You are AWESOME.  We are awesome!
 
Your friend,
Max
 
< My Thoughts >     “You are AWESOME.”  “”We are awesome!”
 
You are AWESOME, Max…and Mom

End of this Focused Excerpts about SCHOOL & AUTISM...​

101 Tips for the Parents of Boys with Autism (2015) Edition & 1,001 Tips for the Parents of Autistic Boys by Ken Siri, (2010) eBook Edition; an Extended Review with < My Thoughts > by Sara Luker
​
(4% indicates location in the Kindle version of the book, instead of page numbers... /101& /1,001 indicates which one of the books the quote is from.)

Focused Excerpts about SCHOOL & AUTISM -

4%/1,001         Parents of autistic children need to adopt the mentalities of both a researcher and a warrior.  As both general and soldier in this fight, you must take ownership of all aspects of treatment, education, therapy, and organization as if preparing for battle.
​
23%/100          Get your non-verbal kids an iPad. This can be  a game changer.  There are several great communication apps now available, including Proloquo2go, AutisMate, and Avatalker (www.avatalkeraac.com).   You can even get your local Board of Education to cover the cost of the device, including any future damage, protective covers like OtterBox.

Before the iPad came along, Alex had to rely on gestures, approximations, and PECS images to communicate his needs and wants.  Alex would frequently melt down and even turn aggressive towards himself as he became exasperated with his inability to convey his requirements.

24%/100          Once your child is confirmed non-verbal or would benefit from a device, as stated in his IEP, then the BOE or Medicaid is required to cover the cost.  The IEP can state that he requires a “Dynamic Display Speech Generating Device”, which an iPad with apps can function as.

25%/100          The IEP meeting includes yourself, your son’s teachers, various school representatives, and a parent representative.  You can bring your own specialists and support folks to help you in any way (moral support, reminders, etc.)

92%/1,001       Don’t wait until the legal age of the school’s transition plan to start transitioning you child into increasing responsibility and independence.  The kids will not willingly go along with this plan to do more, but set an expectation and reward small (very small) steps toward the accomplishment.
 
The adult world is unaccommodating – a fact that is hard to face for everyone, but is particularly so when our special education teams have tried to serve our kids by accommodating to their disability. 
 
Prevent the IEP team and yourself from making decisions that always keep your child comfortable and in control of what he wants to do.  …the world frequently does not offer “comfortable” options.

< My Thoughts >     Individual Education Plan (IEP) thoughts…
 
Absolutely, the parents, guardians, and other caregivers should bring their team to the table.  As a parent myself, attending my first IEP for Sonny, sitting at a huge table with strangers was intimidating, even frightening.  All of these ‘professionals’ sat there like crows lined up on a fence, while I was made to feel that any minute I would be under attack. I’m exaggerating… but for first-timers… even for me as an educator… it’s pretty intense.
 
Because parents have an intuitive sense of what will work for their child, they should be prepared to bring support in those areas which are already working for them.  If your child is doing well with certain programs carried out at home, then that provider should attend the IEP meeting.  Especially if you want to have any current intervention made part of the child’s school program.  
 
Now from a ‘teacher’s’ point of view. As one of the child’s teachers, I created the first part of the IEP to ‘paint a picture’, describing how we as a team see the child.  If you as the parent disagree or don’t understand the jargon on any part of that assessment, speak up!  I create the IEP document at the computer so I could be ‘friendly’ about making any changes.  
 
When it comes to the child’s education, parents and professionals can take more of a team approach.  Speaking as a special education teacher, I bring a team to the table.  This team consists of the principal or surrogate, school psychologist, school nurse, various school therapists (Physical, Occupational, Speech/Language, Adaptive Physical Education teacher, and if needed… Vision specialist, social worker, and mental health personnel; vocational specialists for the older child.).  Also, the school Special Education personnel, teacher, aides, facilitators; plus a general education teacher who can speak to the class requirements, accommodations, etc.  
 
Everyone at the meeting should have a ‘draft’ of the proposed document.  Back to the parent team… you can bring basically anyone you feel knows your child and will help you process what is ‘really’ happening and being said.  Ask for a break; say you need more time (within reason… sleep on it…) before you sign this legal document.  Ask for another meeting in 3 – 6 months, if you feel pressured into agreeing with things you’re not sure of.  Keep in mind that the severity of the autism may limit what the school is willing to agree to.  Ken has addressed the IEP process in both of his book… check further.  Smiles

6%/1,001         …You will never forget where you were when certain National and World events took place.  The day you receive the news of your child’s ‘Autism’ diagnosis is just as traumatic; the only difference is, no one else is sharing your pain… your life is changed forever.  What to do first?
 
< My Thoughts >     “…your life is changed forever.” 
 
As a teacher, I tried to stay in the here and the now.  What would help the child and the family the most?  For the child to be able to communicate?  For the child to stop having hella-tantrums?  For the child to listen to and obey safety commands?  For the child to be toilet trained…feed himself…be engaged quietly for a short time?  What we most often hear is – “I could deal with all the behaviors if I could just hear him say “Mama.” 

If he would just acknowledge me by looking me in the eye…If he would just hold my hand and walk with me.  Sorry to say that these goals are way, way off in the distance (if they ever happen)…but we as parents want this too, so I always tell mom that we will try.  
 
At the time of diagnosis, I don’t believe the educator or the parent truly knows what the eventual outcome or level of care necessary will be.  The other reality is that new interventions are being embraced as we speak, such as assistive technology and augmentative communication, which may provide the missing link for your child to find a more productive life.  
 
As an educator, I also know that many of my colleagues are continually attending workshops, interactive seminars, college classes, and meeting yearly professional development requirements.  But, then there are those others who stand by their original understanding of what it takes to educate and support a child on the spectrum.  In fact, the idea of a ‘spectrum’ may not have existed when they formed their steadfast opinions about autism.  I went back to get a Master’s in Special Education for that reason.
 
This is where you become both researcher and warrior.  Find out about those people who are inserting themselves into your child’s life.  It is costly to change programs, change schools, or even move to another state.
 
14%/1,001       Consider your options.  Do your research.  Consider moving to another state.  Some states spend a greater percentage of their budgets on social services and thus have more services available.  You need all the help you can get; seek out states considered to be “autism friendly.”  Easter Seals has compiled a list of state profiles.  Look for states with bigger budgets for social services, and for a higher percentage of autism programs. 
 
8%/100            In some cases, one or both parents may need to change or adjust their career plans to accommodate the care of a special needs child.  As a single parent, the challenge can be daunting.  Many parents have remade themselves successfully and found a greater satisfaction in building their own business.  These are not really tips, but have benefits as well.

End of Focused Excerpts about SCHOOL & AUTISM -

==========

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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