POSTER sayings…
Clockwise @ 12 o’clock, starting with –

• I can be sensitive to loud noises
• I don’t like to brush, wash, or cut my hair
• I like to smell people & objects, sometimes
• I don’t like tags on my clothes
• I don’t like to wear clothes
• I enjoy being squeezed, I like pressure
• I don’t want my hands dirty
• I have poor fine motor skills
• I get overstimulated & meltdown
• I get fearful & anxious sometimes
• I overreact to minor scrapes & cuts
• I cling to adults I trust
• I sometimes walk on my toes
• SPDPS
• Poor body awareness
• I crave fast spinning
• I lose my balance
• I like wearing the same clothes
• Sometimes I don’t like to be touched
• I have poor gross motor skills
• Can be clumsy & fall over things sometimes
• I am a picky eater
• Some smells really bother me
• I don’t like bright lights
• I don’t like to brush my teeth

Part 7 BLOG #5G Know Your Child: Sensory Response

The sensory features of children and adults with Autism exhibit four sensory response factors which factor into five sensory modalities.

Sensory Response factors:

• Hyporesponsiveness (under responsive to stimuli)
• Hyperresponsiveness (over responsive to stimuli)
• Repetitious & seeking responses to stimuli, or lack thereof
• Enhanced perception (seemingly super powers)

Sensory Modalities:

• Auditory
• Visual
• Tactile
• Gustatory/olfactory (taste & smell)
• Vestibular/proprioceptive (sensory signals from ears & eyes which affect movement & balance)

Ausderau, et al. (2014) remind us that the DSM-5 includes sensory features as core to autism. The main purpose of this study was to provide empirical validation for using the Sensory Experiences Questionnaire to determine Sensory Responses.

< My Thoughts >       “…sensory features as core to autism.”
This study ended by saying that there needed to be further findings, as the current questionnaire had limitations and left one with many more questions to be asked.

My interpretation was that it’s sort of a ‘chicken or egg’ controversy. Does the person have sensory issues which make them seem to have autism… or, is it the autism that creates the unusual sensory responses? Thrown in with all of this… there are questions about the affects of the severity of the autism and the sensory issues.

REFERENCES used here:

Ausderau, K., Sideris, J., Furlong, M., et al
(2014). National Survey of Sensory Features in Children with ASD: Factor Structure of the Sensory Experience Questionnaire;  Journal of Autism & Developmental Disorders; V44;915-925.
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 < My Thoughts >      What I am offering here is a powerful story which may capture at this moment, what it is like to have this experience.
 
A Spot on the Wall, by Martha Sqaresky; eBook 2014 Edition; with < My Thoughts > by Sara Luker
 
Focused Excerpts from the book (85% indicates location in the Kindle version of the book, instead of page numbers.)
 
85%   Milestone Achievement Center. Age: twenty-one. We had renewed anxiety as more calls arrived at my desk at work, yet government regulations stipulated that in the event of a physical attack, parents had to be notified. As at every school, there can be violent incidents.
 
Greg had no concept of violence. If he entered someone’s space, he expected that someone to step back and make a new space.
 
If Greg entered the space of someone with anxiety issues before a teacher or aide spotted a problem, he got hit. It was fast, and it was unexpected.
 
85%     Greg’s fingers showed evidence of his own personal attacks. For years during tantrums, he bit his fingers. Calluses built up to the point that when we held his hand, we felt the hard spots on each side of his index fingers.
 
To better understand why Greg exhibited this self-injurious behavior, I compared it to cutting. Cutters seek a release from the emotional pain that they are experiencing, and may cut on impulse.
 
Greg felt better when he bit his fingers. Maybe there was a release of endorphins that brought relief from whatever was causing Greg’s tantrums, thus making it a compulsive behavior. In many ways his puking mirrored cutting.
 
My hope was that Greg understood the pain inflicted on him by a fellow sufferer of autism as nothing personal.  I wanted him to find peace from his personal demons as well.
 
< My Thoughts >     “…but there is nothing ‘wrong.”
 
This is where parents may find themselves on the ‘slippery slope’. Bonnie Zampino (2016) writes – “We aren’t aware (of what ‘some’ autism looks like), not at all. But, we can open our eyes and understand that all autism isn’t about the high functioning child who is “quirky” but okay to be around. Neither is autism about the six-year-old who can play Piano Man better than Billy Joel. Autism can be sad. Autism can be messy. Autism can be violent. Autism can be isolating.”
 
Autism can be some of the things that Sonny does, such as self-injurious behavior (SIBs) that is compulsive, ritualistic, and some sort of stimulation or communication. Before finding a therapeutic dosage of medication to help him, he would also strike out to bite or hit others. He would stick a finger in his eye, poking and poking until restrained. There are other undesirable and even dangerous behaviors, which I will not go into. I’m sure you get the idea of how frightening this can be.
 
REFERENCES used here are:
 
Zampino, B. (2016). My Son Has the Kind of Autism Nobody Talks About – Term Life. Recently retrieved from: http://medicinetimes.info/2016/05/08/my-son-has-the-kind-of-tas-aout-term-life/
 
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See Beyond Behavior: BEHCA: a Method for Understanding & Influencing Behavior Change by Torri Wright (2018); beca.com; with < My Thoughts > by Sara Luker
 
Focused Excerpts from the book (32% indicates location in the Kindle version of the book, instead of page numbers.)
 
32%     A behavior consultant is able to offer new insight for the entire family to digest and begin to shift the perspective needed to track and record behavior. An example would be – The family is concerned that Johnny seems to be an aggressive child, frequently hitting those in his environment. Through BEHCA data collection the behavior consultant is able to find that Johnny is not doing this on purpose but as a sensory response to his environment. He is also not aware of how hard he is hitting.
 
33%     Taking this further… perhaps Johnny’s behavior is due to his not knowing what his body is doing. He is lacking spatial awareness. Or, by slamming his body/arms into things or people, he is seeking sensory input. But, he is not intentionally trying to hurt anyone.
 
< My Thoughts >   “He is not intentionally trying to hurt anyone.”
 
Now, when the behaviorist shares this information with family and teachers, they can see that Johnny is NOT an aggressive child. Johnny is engaging with his environment in the only way he knows how to, in order to satisfy his sensory needs. Note: Created by Torri Wright, BEHCA is a software application specific to collecting and analyzing data. It has the function to become a virtual communication among multiple environments.
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 < My Thoughts >      What I am offering here are powerful stories which may capture at this moment, what it is like to have this experience.
 
I Know You’re In There: Winning Our War on Autism by Marcia Hinds, 2014 eBook Edition; Extended Review with < My Thoughts > by Sara Luker
 
Focused Excerpts from the book (75% indicates location in the Kindle version of the book, instead of page numbers.)
 
75%     Hitting was our dirty little secret. I never told anyone except Frank about Ryan’s aggressive behavior. The hitting stopped after I became more stubborn than my son and became more serious about enforcing consequences. Disrespect from either of my kids was my hot button. He finally learned the consequence of his behavior was the loss of more computer time. Later, when I asked him why he stopped hitting me he said it was because I took away his beloved computer and wouldn’t give it back until he behaved the right way.
 
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Secondhand Autism by Paul Brodie; eBook 2013 Edition; with < My Thoughts > by Sara Luker
 
Focused Excerpts from the book (65% indicates location in the Kindle version of the book, instead of page numbers.)
 
65%     Sibling Alison – I am never embarrassed at anything anymore since doing theatre; but put me in a store with Scott and my stress hits a peak and I think about it all day and I feel bad for Scott.
 
I took Scott out a lot to restaurants and stores and it was very stressful for me to even be in the car with him because I was afraid he would jump out of the car randomly (which he has done a few times).  Some days, he wants to go do something, but most days he wants to say inside. 
 
67%     One time…Scott seemed agitated and wanted something from the fridge.  I walked by and saw so I stopped to open it for him.  I was having difficulty with the combination lock… so he suddenly pushed me towards the fridge, really hard.  I think that was the moment I realized Scott had the temper of a toddler, but the strength of a man…
 
< My Thoughts >       “I realized Scott had the temper of a toddler, but the strength of a man…”
 
Green (2013), “Siblings eventually develop awareness that the individual with ASD is often unable to control their behavior, resulting in some forbearance on the part of the sibling.”  Eventually they realize that they are unable to control an unwanted behavior…”  Resulting in the sibling feeling unsafe and anxious when left alone with them.
 
REFERENCES used here are:
 
Green, L. (2013). The Well-Being of Siblings of Individuals with Autism; ISRN Neurology; Vol 2013; Art. 417194.
===================

Aggression, violence, challenging behavior –   Sensory Impairment
 
Aggression, violence, and other challenging behavior may really be signs of Sensory Issues. Denman, et al. (2016) say… Families of a child diagnosed with autism can find themselves trying to understand their child’s behavior while on the waiting list for ‘formal diagnosis.’ How this ‘parental making sense’ of behaviors affects parenting. Continuing saying that confusions can also occur with children who have insecure attachment patterns and sensory impairments.
 
Also that it is hard for parents to understand how a slight change in routine can cause a child to have a ‘meltdown’ in the middle of the street. At the same time, parents are concerned about the need to present a ‘positive identity’ to others; while allowing ‘face saving’ while around friends and family members.
 
< My Thoughts >       Uninformed society says, “Bad kid… bad parenting… or both.” Or as someone so appropriately stated… “He’s not giving me a bad time…”  “He’s having a bad time…”
 
 What I am offering here are powerful stories which may capture at this moment, what it is like to have this experience.
 
What Color is Monday? How Autism Changed One Family for the Better by Carrie Cariello, eBooks 2015 Edition; with < My Thoughts > by Sara Luker
 
Focused Excerpts from the book (13% indicates location in the Kindle version of the book, instead of page numbers.)
 
13%     We accepted the diagnosis and forged ahead, getting Jack into as many services as we could.  I do think in the back of our minds we both harbored the notion that he would outgrow this, that his symptoms would diminish and he would blossom into a typical child.
 
14%     Jack was very difficult that spring.  In his preschool back in Buffalo he’d started biting and kicking both kids and teachers, and everyone seemed at a loss as how to control his behavior.  At home he’d started to hit both Joe and I, and to get into mischief…
 
< My Thoughts >  “…he’d started to hit both Joe and I…”
 
Frea, et al. (2001), tell us that “…exhibiting extremely challenging behaviors can be improved with some sort of intact communication system which allows the child to express choices and preferences, in all settings.”
 
REFERENCES used here are:
 
Frea, W., Arnold, C., Vittimberga, G., Koegel, R. (2001). A Demonstration of the Effects of Augmentative Communication on the Extreme Aggressive Behavior of a Child With Autism Within an Integrated Preschool Setting; Journal of Positive Behavior Interventions; Vol.3:4, p194.
 
=========
 
I Wish I Were Engulfed in Flames: My Insane Life Raising Two Boys with Autism by Jeni Decker; 2011 Edition; with < My Thoughts > by Sara Luker >
 
Focused Excerpts from the book (22% indicates location in the Kindle version of the book, instead of page numbers.)
 
22%     I’d stopped at the drugstore to pick up a new prescription for Jaxson, the third in a series of medications to try and help prevent his aggressive behavior, particularly at school. 
 
23%     When I am in the store and my child suddenly rolls into tantrum mode, kicking and screaming and such, it’s not very helpful if a passerby says things like, “He needs is a good spanking,” or “You wouldn’t see my kid acting like that.” I want to say, “Go ahead and hit him, see if it works.” Or, “Bye, honey. This nice man is gonna take you home. Have fun…”
 
Okay, so I don’t actually do this. But I really, really want to.
 
24%     I maneuvered to press Jaxson against the car with my body, fishing for my keys.
 
It took ten minutes to unlock the door and push my screaming child inside. I closed the door and stood there for a moment, taking a look at the nice bruise on my arm that was already forming, his little teeth imprints clearly in the center.
 
Suddenly a nice lady handed me the bag I’d dropped and smiled as Jaxson wailed inside the banging on the window, his voice only slightly muffled by the closed windows.
 
“He’s autistic,” was the only thing I could think of saying. “Yeah, I kind of guessed there was something going on there besides the regular old tantrum.
 
Can you get home okay?” she asked.  My eyes filled with tears. “Yes, thanks. You have no idea how nice it is to have someone not judging me right now.”
 
“I think I can guess,” she smiled and then left for her car.
 
That day, I met an angel outside the Rite Aid drugstore.
 
< My Thoughts >  “…You have no idea how nice it is to have someone not judging me right now.”
 
Again, the parents in the Hoogsteen & Woodgate (2013) study felt that their community members were unaware and uneducated about the challenges they faced when bringing their child with them when they shopped or visited in the community.  Such as when the negative characteristics of autism were displayed,– tantrums, yelling, disruptive behavior, meltdowns, screaming, physical violence towards themselves and others.”
 
“Most people look at you and they just think he’s a bad kid… because he looks normal.”  “What they think they see is bad parenting, a bad uncontrollable child, or just a rude disruption to their shopping experience.
 
Participating parents shared how difficult it is to feel that they are on their own… that most people out there are so judgmental and frustrating.  One parent says “You get home, and you’re just destroyed because it replays in your mind. How do I make them understand?”
 
REFERENCES used here are:
 
Hoogsteen, L. & Woodgate, R. (2013). The Lived Experience of Parenting a Child With Autism in a Rural Area: Making the Invisible, Visible; Pediatric Nursing; V39:5.
 
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Part 5 BLOG #5E Know Your Child: More About Law & Autism & Parenting and < My Thoughts > by Sara Luker
 
LIGHTING UP FAMILY LAW IN BLUE: AUTISM’S IMPACT ON THE FAMILY AND FAMILY COURTS
By:Ron Payne Ed. Note: This article was authored by Kimberly J. Byrd, Esq
 
Byrd (2018) tells us that parents often battle with the diagnosis of autism. Instead they may choose isolation from extended family and community. The unpredictability of their child’s behavior when experiencing episodes of ‘sensory overload’, ‘social issues’, ‘cognitive’ and ‘behavioral’ limitations.
 
Bogdashina & Casanova (2016) tell us that behaviors such as rocking, rhythmic head banging, spinning objects, or perimeter hugging in large spaces can be sensory perception issues.

​They go on to say that autism is often considered an ‘obsessional ritualistic behavior’ or unusual interest in their sensory environment. This results in the child heightened fascination with spinning objects, certain sounds, and or lights.
 
Excessive touching, or smelling objects, as well as other sensory behavior one might find normal with a blind person, can be early signs of sensory issues. Some researchers believe these are often early signs of autism in young children.
 
Retrieved from:  http://senseablekids.com/sensInt.html

Widely recognized is A. Jean Ayres' definition of sensory integration. "Sensory integration is the neurological process that organizes sensations from one's body and from the environment, and makes it possible to use the body to make adaptive responses within the environment.
 
To do this, the brain must register, select, interpret, compare, and associate sensory information in a flexible, constantly-changing pattern."

Simply said, sensory integration is the relatedness of one to others, one to their environment, and one's ability to adjust oneself to function within the environment with oneself, others, and objects within it.
 
According to Byrd (2018), researchers typically describe the parenting stress of children with autism as greater for both parents than for other disabilities. Also imposed upon the family are limits on career opportunities and the high likelihood that one or more parents need to remain in the home to care for the autistic child/adult.
 
< My Thoughts > A story to share…  Focused Excerpt from –
 
Making Peace with Autism: One Family’s Story of Struggle, Discovery & Unexpected Gifts by Susan Senator, eBook  2006 Edition; an Extended Review with < My Thoughts > by Sara Luker
 
Focused Excerpts from the book – (3% indicates location in the Kindle version of the book, instead of page numbers).
 
3%       We as a family are frequently hamstrung by Nat’s unpredictability, our plans held hostage by autism. We can never simply go to a concert, a movie, a friend’s party without first wondering, “Can Nat Handle it?”

Despite intensive schooling and our Herculean efforts, he still has tantrums, and even when he doesn’t, he can be just plain unpleasant, unhappy, or embarrassing in public.
 
5%       Having Nat has tested our marriage, forcing us to stick together even when we have been tempted to run. My husband Ned has had to adjust his career; he has chosen to be a family man rather than a company man.
 
He says he’s never looked back, and I believe him.
 
End of Focused Excerpts from the book.
 
< My Thoughts > Another story to share…  Focused Excerpt from –
 
101 Tips for the Parents of Boys with Autism (2010) by Ken Siri eBook Edition; Extended Review with < My Thoughts > by Sara Luker
 
Focused Excerpts from the book – (8% indicates location in the Kindle version of the book, instead of page numbers).
 
8%       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.  These are not really tips, but have benefits of being on your own.

• You can control your own time
• You do lose ‘security’ in the traditional sense.  But let’s face it: a traditional job (in today’s world) only gives the illusion of security.
• Being your own boss means not having to deal with unsavory things or people.
• Socially, you are free.  (You don’t have to get along with people you don’t really like.)
• You can use your time wisely and efficiently.

Many parents have remade themselves successfully and found a greater satisfaction in building their own business. 
 
End of Focused Excerpts from the book.
 
< My Thoughts > Next story to share…  Focused Excerpt from –
 
Building in Circles: The Best of Autism Mom by Elizabeth W. Barnes, eBook 2014 Edition; with < My Thoughts > by Sara Luker
 
Focused Excerpts from the book – (22% indicates location in the Kindle version of the book, instead of page numbers.
 
22%     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!
 
< My Thoughts > “…it is hard for him to read people’s facial expressions …”
 
Grossman & Tager-Flusberg (2012), tell us that there is some correlation between the “degree of social impairment, and the ability to determine what dynamic facial expressions mean.”  Their pilot study showed that participants found it most difficult to differentiate between “the properties of surprise and those of a happy expression.”

Participants learned that teen with their mouths in an open position were in a state of high intensity of anger, sadness, and surprise. While teens with closed mouths were experiencing an emotion of lesser intensity.
 
End of Focused Excerpts from the book.
 
REFERENCES used in < My Thoughts > are:
 
Bogdashina, O. & Casanova (2016). Sensory Perceptual Issues in Autism and Asperger Syndrome, Different Sensory Experiences – Different Perceptual Worlds; Second Edition: London; Philadelphia: Jessica Kingsley Publishers.
 
Byrd, Esq., K. & Payne, R. (2018). Lighting Up Family Law in Blue: Autism’s Impact on the Family & Family Courts. KBYRD.JDWFU2013@gmail.com
 
Grossman, R., Tager-Flusberg, H. (2012). “Who Said That?” Matching of Low & High Intensity Emotional Prosody to Facial Expressions by Adolescents with ASD. Journal of Autism Developmental Disorders; 42:2546-2557.

Part 3 BLOG #5E Know Your Child: More About Law & Autism &Parenting and < My Thoughts > by Sara Luker
​
The bottom line with the Court System and how they choose the parent most advantageous for the child to spend time with… or, to be awarded primary custody… may be determined by which parent they feel can maintain the ‘best interest of the child’ while accurately advocating for them as well as for themselves; according to Byrd, Esq., K. & Payne, R. (2018).

Byrd also brings to ‘light’ the added challenge for the court of when it becomes obvious that one or more members of the child’s family, especially the parent, may also have ‘undiagnosed’ autism. The ‘Asperger’s Syndrome’ traits of seeming to be highly intelligent and ‘obsessively in need to control’ things and others in their environment.

This challenge can increase when both parents seem to demonstrate the inability to participate in a give-and-take situation, nor show flexibility instead of rigidity and egocentricity, due to their own struggle with autism. Added to that, when one or more members of the family are having their typical ‘good days’ and ‘bad days’ then the court may become concerned for the impact on the child.

< My Thoughts > “…‘good days’ and ‘bad days’”
At this point, I wish to share more about “…‘good days’ and ‘bad days’”. This is a Focused Excerpt from my Extended Book Review of –

Curious Incident of the Dog in the Night-time, by Mark Haddon; eBook 2003 Edition. An Extended Book Review with < My Thoughts  > by Sara Luker

Excerpts from the book (11% indicates location in the Kindle version of the book, instead of page numbers).

11%     4 red cars in a row made it a Good Day, and 3 red cars in a row made it a Quite Good Day and 5 red cars in a row made it a Super Good Day, and 4 yellow cars in a row made it a Black Day which is a day when I don’t speak to anyone and sit on my own reading books and don’t eat my lunch and Take No Risks.

< My Thoughts >     About rituals…

Wolff, Hupp, & Symons (2012) explain that ritual and compulsive behaviors may be considered ‘functionally avoidant’ because they serve the person by preventing some future advent. They believe that the person performs the ritual when they are unable to effectively communicate what they are feeling.

Christopher perceived his rituals as both creating and avoiding future events. Dr. Ronit Levy, Bucks County Anxiety Center, Newtown, PA gives us the reasoning that when persons with severe anxiety need reassurance they often times perform ritualistic behaviors. This person is helped through frequent self-determined images of things going well or terribly wrong.

24%     The next day I saw 4 yellow cars in a row on the way to school, which made it a Black Day, so I didn’t eat anything at lunch and I sat in the corner of the room all day and read my A-level Maths course book.

I have had 2 Black Days in a row I’m allowed
to do that. But it wasn’t the end of it because five days later I saw 5 red cars in a row, which made it a Super Good Day, and I knew that something special was going to happen.

End of excerpts from the book.

REFERENCES used are:

Byrd, Esq., K. & Payne, R. (2018). Lighting Up Family Law in Blue: Autism’s Impact on the Family & Family Courts. KBYRD.JDWFU2013@gmail.com
 
Wolff,J., Hupp,S., & Symons, F. (2012). Brief Report: Avoidance Extinction as Treatment for Compulsive & Ritual Behavior in Autism; Journal of Autism & Developmental Disorders; V43, p1741-1746.
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Part 2 Blog #5D Know Your Child: More About Law & Autism and < My Thoughts > by Sara Luker

Beyond the News, May 2015, talks about The State of IDEA, 40 years later. IDEA requires states and districts provide a free, appropriate public education (FAPE) to students with disabilities. It also mandates and Individualized Educational Program (IEP) for each student with disabilities. They also inform us that the number of student disability groups have declined since 2005… BUT the number of students within these groups has been on the increase by 93%. Those groups are – autism, asthma, epilepsy and diabetes. This places a larger financial burden on the states and local governments who serve this population.

Continuing, they state in this article that the Federal government will have to supply states with more than $20 billion dollars per year in additional special education funding to meet their commitment. And, that districts serving low-income students and students of color receive 10% less per student than those serving white and more affluent students.

< My Thoughts > “…receive 10% less per student…”

Added to that, my experience in teaching in a rural area, where families covered a wide range of socio-economic differences, there were other marginalizing factors. First, let me explain some of those socio-economic differences. Some families were living in a rural area by choice and some because they were able to live off the land, so to speak. Parents may have a lovely home with stables for horses, garages for expensive vehicles, and a landing strip for their private plane. Or, parents may be living off food stamps, their housing resembling more of a shed or lean-to.

There is one Pre-school through 12th grade public school and one Charter High School. Both had a Special Education Department with highly qualified Special Education Teachers, but the other professionals who served the disabled students were Public School ‘itinerant’ persons traveling weekly or monthly between city schools. That included the School Nurse, School Psychologist, Speech Therapist, Physical Therapist, Occupational Therapist, Vision Therapist, and even the School Librarian.

You may ask how or why does this matter? Well, it matters because when writing and presenting an IEP, the team members should/must include many of these people. The logistics of receiving their reports, evaluations and time available to attend and meeting coordinated with others and the parents, becomes extremely difficult. This is important because creating and tracking the students’ IEP goals require continuing input from these professionals. Try to find out how often a therapist will provide service to your child, because many large school districts don’t have nurses and therapists as ‘full-time’ staff members. Just saying.

Slade, et al. (2018) gathered information about how parents of children with Autism Spectrum Disorder (ASD) felt about the Individualized Educational Program (IEP) services for their child. They found that the heightened demand on schools to provide for the educational needs of these ASD students is often extremely challenging. The ‘cost’ to parents was them finding great dissatisfaction with the process and also with the number of years experience, or lack thereof, associated with the program’s teachers.
Parent satisfaction/dissatisfaction was tied to four aspects of the IEP process –

• Content of the IEP document
• Special education services ‘actually’ being provided
• Level of agreement between the document and actual services received
• Effectiveness of the special education (IEP) team

They comment that program violations and general parent dissatisfaction, in some cases resulted in IEP-related litigation. This litigation went forward because the child was placed before an IEP was developed by a qualified IEP team. As well as a possible ‘mismatch’ between those services stated and those actually provided. Parents also complained that they were not included in the planning, nor were they involved in the data collection. Some parents felt that their child’s behavior problems increased as a result of the poor ‘blueprint’ (IEP) which had been hastily created for their child.

< My Thoughts > “…possible ‘mismatch’ between the services stated and those actually provided.”

Even without moving to litigation, 42% of the parents surveyed felt that half or all of their child’s IEP aspects were lacking. In other words, there was no fidelity between what the IEP, a legal document, stated the child would receive in services… and what s/he actually received. I would like to add to that… there is often an ‘itinerant’ professional sent weekly or monthly to provide those services. Plus, that itinerant person may be not even be ‘highly qualified’, nor may they be doing ‘follow-up’ with the child’s Teacher of Record (TOR), nor the IEP team. Just saying.
 
And then, behavioral problems and communication problems often go hand-in-hand for the child. Are the primary specialists/therapists and other specialists/therapists collaborating so as not to be giving the child conflicting goals? In my experience, communication and behavior goals need constant follow-up, parental input, and often more than monthly revision. So, you can see how complex this whole business is. Because each child on the Autism Spectrum is SO different, it may take the approach of a warrior and sleuth. P.S. as you may have already read… each goal and goal change requires IEP revision and, and, and, notification to ALL of the child’s teachers. Smiles.

Byrd & Payne (2018) say that the emotional impact of parenting a child with autism is compounded by the numerous practical demands placed on families by therapies, interventions, financial burdens, medical care, and reduced work opportunities. This may be more harmful than the child’s cognitive or behavioral limitations.

Byrd goes on to say that parents of a child with autism are nearly twice as likely to divorce as parents without a child with autism. That risk of divorce remains high throughout that child’s lifetime, extending into adolescence and young adulthood, according to research. Of course they state that the families individual ability to show resiliency is a determining factor.

The Judicial case law address the cases where autism spans parental rights, as well as both parents being treated fairly and equitably while preserving the best interests of the child are in the courts hands when divorce is involved. The courts may also insist that parental support continue beyond the age of 18 years. In that case, the courts may also deem that the juvenile has the capacity to participate in any hearings. The courts may have a greater say in ‘overnight visits’, quality of and moving of parental residences.

Other considerations for the court are shared custody and whether both parents can provide proper parenting and meet the child’s needs. Considerations for parenting the child with a disability or multiple disabilities include… but are not limited to which parent can best deal with the child’s:

• Sensory defensiveness regarding daily living routines, such as hygiene.
• Need for protection when the child may pose a danger to themselves.
• Sudden delays caused by the divorce or other factors.
• Autism as well as the challenges of the divorce. And to seek professional guidance, as needed.
• Need and the parents’ need to consistently follow through with necessary programs and services.
• Ability to continue to participate in the any recommended behavioral interventions/programs.
• Need for a parent most able to self-educate and to advocate for the child.
• Develop both emotional and psychological resilience. And a parent who can ‘handle’ the daily stress of parenting.
• Be provided with a quality special education setting and least restrictive environment.

< My Thoughts > “…‘overnight visits’, quality of and moving of parental residences.”

At this point, I wish to share how one family handled this type of situation. This is a Focused Excerpt from my Extended Book Review of – 3500: An Autistic Boy’s Ten-Year Romance with Snow White, by Ron Miles; eBook 2013 Edition; with < My Thoughts > by Sara Luker
 
Excerpts from the book – (60% indicates location in the Kindle version of the book, instead of page numbers).
 
6%       The final blow to our marriage was my father’s death. I went into deep depression, and I am sure I was both a bad husband and a bad father for months. It would take over a year to finalize, but our marriage was over.
 
Although we had the standard court-ordered parenting plan that said something like “one weekend per month, two weeks in the summer”, in reality we fell into a rhythm of Ben being with his mom during the week and with me on the weekends.
 
22%     I remembered a trip we had taken Ben on to the Magic Kingdom. His mother and I were stunned at how much he was enjoying the trip. There was even a time when non-verbal Ben spontaneously called out “Snow White”. That was the moment when I knew right down to my core that Walt Disney World was the single biggest piece of magic that had ever entered Ben’s life.
 
23%     Spring turned into summer, and the difference between Ben-At Disney and Ben-In-The-Real-World was very stark indeed. The difference between his maddening behaviors and him skipping his way through the Magic Kingdom and I began to wonder if maybe he actually belonged there.
 
24%     I tentatively brought it up with his mother… Should we uproot both households and move to the opposite corner of the country so that our profoundly disabled child could go play in the Magic Kingdom year round? It seemed ludicrous, yet neither of us could get it out of our heads.
 
The only rational thing to do would be to plan a second vacation to Walt Disney World and see if he showed the same response again. If he didn’t then no harm, no foul. We would have an answer and abandon the idea of the move. If he did, then we would start making concrete plans.
 
26%     Naturally, the universe does not like it when life gets too easy or too predictable. I was on a direct course to moving 3,000 miles across the country to go live in a theme park. So that’s when I fell in love.
 
For several years after my divorce, I didn’t even date. Then I invited Kris, whom I had met through friends, to a company party. She said it was love at first sight for her. It took me a while to catch up. But months later, I left my new love Kris behind in Seattle and headed to the airport with my son and my ex-wife. Weird, right?
 
42%     Ben’s mother had already found a new home directly to the northeast of the Disney property. I opted for an apartment to the southwest of Disney.
 
End of excerpts from the book.

Note: Complete Extended Book Reviews with < My Thoughts > by Sara Luker may be found on my website www.sarasautismsite.com by book title.

REFERENCES used are:
 
Byrd, Esq., K. & Payne, R. (2018). Lighting Up Family Law in Blue: Autism’s Impact on the Family & Family Courts. KBYRD.JDWFU2013@gmail.com.
 
Slade, N., Eisenhower, A., Carter, A. & Blacher, J. (2018). Satisfaction With Individualized Education Programs Among Parents of Yound Children With ASD; Exceptional Children; V84:3, p242-260.
===========================         

​Blog #5D Know Your Child: More About Law & Autism -

Understanding the Law regarding Autism is tedious. We will start with how the laws work in states, schools, and communities. While the Federal Government mandates laws which must be followed, individual states determine how, when, where, and why they will or will not comply.

According to Autism & Insurance Coverage: State Laws, 8/8/2018, retrieved from the follow website –
http://www.ncsl.org/research/health/autism-and-insurance-coverage-state-laws.aspx there are 46 states and the District of Columbia which have laws that require insurance coverage of autism. Other states may have limited coverage under Mental Health or other laws. Some 12 states have waivers which make Medicaid funds available to assist individuals with autism, such as from the Easter Seals organization. Restrictions may apply, such as – insurance coverage until the age of 18, or 22 in some states; and only if the individual is enrolled in an approved school.
 
Bilaver, et al. (2015) tell us that FAPE, Free & Appropriate Public Education was meant to strengthen public school capacity to deliver services to those families and individuals unable to access needed services at home.

But according to this study, services still fall short due to specialists being overworked with heavy caseloads. Highly trained specialists providing intervention services can be licensed speech therapists, occupational therapists, behavior therapists, and those providing social skills training.

In their study, Turnbull, III, et al. (2002) answer questions regarding the federal special education law IDEA, Individuals with Disabilities Education Act renewal in March 1999. The ‘new’ IDEA is outcome-driven. That is that Local Education Agencies, LEA’s, are required to assess and ensure the effectiveness of efforts to educate children with disabilities. Providing seamless provisions and procedures, nondiscriminatory evaluations, linked to the IEP, Individualized Educational Program and LRE, Least Restrictive Environment, and including high school transition to post-secondary activated after high school. Both statute regulations by the U.S. Department of Education; plus the regulations, rules and procedures implemented to achieve goals intended by Congress, carry the force of law.
 
The IEP Team is required to consider if appropriate strategies, including positive behavioral interventions and supports address that behavior which are both state-of-the-art and nonaversive. In order to qualify for federal funding, the state law must meet the requirements of the federal law and may exceed those federal minimums.

The Section 504 Plan and ADA, Americans with Disabilities Act generally include protection of reasonable accommodations to persons with disabilities to attend a public facility or program. They also provide that a school must have a wheelchair ramp or other reasonable accommodations to allow an individual to enter and exit the school building easily and safely. Students themselves may now be included in all decisions and determinations regarding their education, as appropriate, and included in all ongoing planning, including Transition Planning.

< My Thoughts > Transition Planning  – 

In many states, schools start children with special needs on a Transition Plan to be implemented in the last years of public schooling. Students can attend school until age 21 years (or, for some... until 22nd birthday). Look into how your state implements these plans. Some start as soon as the child is identified in the system. What that may mean is that the child learns the life skills as well as the academic skills they will need after the public school program ends and their life in the community begins.
 
Of course as with any plans…there’s good news and bad news.The good news is that students are put on a special track which supports their abilities and talents, but this should be evaluated every few years.The bad news is that if future evaluations don’t occur and the child either progresses or regresses beyond the initial plan, then the outcome may be drastically different. 
 
For example, I have had students who would not have been put in computer classes because of much earlier evaluations. But when they hit middle school, for whatever reason, their brain and hand-eye coordination had improved to the point where learning to keyboard on the computer was very doable. And, a skill which can take them far.
 
I would offer the computer at the beginning, the middle, and the end of each semester to my students.  I didn’t always write it as an instructional goal, but I had a small and very coveted computer lab in my classroom where the opportunity was ever available. I also invited students to dictate their stories and eventually their essays to me while I typed them, so that they could get a feel for how keyboarding could extend their independence and improve their learning skills.
 
This can be integrated with Letterboard skills and with Assistive Technology which is available on all ability levels, from voice activated to Braille keyboards, and everything in between. 

Turnbull, III, et al. (2002), continue. First requirement is that it will be determined whether or not a child qualifies for services under IDEA. Also, does that child qualify for the enumerated disability? Second requirement, does that child need special education because of his or her disability? Note, in some states, the child may have to ‘requalify’ for services after the age of 3, or after being reevaluated under the new DSM- 5, Diagnostic & Statistical Manual of Mental Disorders.

Also, schools are prohibited from instating an individual’s removal that constitutes a ‘change of placement’ if it is determined that the child’s behavior is not a manifestation of the child’s disability. The IEP team would be required to reevaluate the child’s IEP and impending FBA, Functional Behavior Assessment or BIP, Behavior Intervention Plan before a ‘change of placement’ is determined.

< My Thoughts > about IEPs & BIPs  – 

Anytime and every time your child has been given a Behavior Intervention Plan, it should become part or their current IEP. Also, make certain ALL of the child's teachers know that it is in place... and, what their part is in the implementation of that BIP. In other words, the Art Teacher should be following the plan strictly, as well as all other... including the Lunch and Recess personnel and substitute personnel. 

Here's an example of what can go terribly wrong for your child...

Building in Circles: The Best of Autism Mom by Elizabeth W. Barnes; eBook 2014 Edition; with < My Thoughts > by Sara Luker
Excerpts from the book – (60% indicates location in the Kindle version of the book, instead of page numbers).
 
60%     "Wait, What?" –

(Sometimes I like to drop by Navigator's school to visit his classroom)  First, 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, by himself. 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.

Ironically, 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.

End of excerpts from the book.

More Turnbull, III, et al. (2002), the IEP Team is also required by law to give the parents a Parental Notification Letter in advance of any pending meeting involving themselves and their child. Parents have the right to reschedule, invite others, and make requests. This is all clearly stated in the Notice of Procedural Safeguards & Parental Rights booklet, also required by law to be given to parents, prior to the scheduled or proposed meeting set by the IEP Team.
 
IDEA mandates that there may be no classroom placement nor programs are to be entered into, until the child is evaluated according to nondiscriminatory evaluation requirements. There are other statutes providing the child be awarded IEP development and assessment by personnel whom have ‘special knowledge’ regarding the disorder the child is being tested or receiving services for.
 
Another important part of IDEA is the provision for the child to receive programs and have placement in a LEA, Least Restrictive Environment. This means, generally that persons with disabilities are to be ‘fully’ or ‘partially’ integrated to varying degrees, and with modifications and accommodations, into the general curriculum. IDEA states that ‘full’ integration is preferred over ‘partial’ integration and ‘partial’ integration is preferred over ‘segregated’ service-delivery. Studies say that students who are severely disabled still benefit from interaction with their nondisabled peers.
 
Other types of services must be made available to the child. The need for Assistive Technology, augmentative, or alternative devices; or any other supplementary aids deemed necessary, is to be provided as an educational benefit. During extended school breaks, individuals must receive ESY, Extended School Year services and necessary transportation and specially trained aides, as needed at no cost to the family. This is when the child is currently enrolled in a school or program and they are being served by that school or program; it must also be part of their IEP. An IEP is always a ‘legal’ document.

< My Thoughts > Extended School Year Services – 

ESY is so important because it doesn't take much for some students to lose skills over a 2 - 6 week period of time away from the classroom. Many school districts try to eliminate this service by stating that the student has met their goals, during the school year, and don't need to progress further until the next school year. First of all, the child has legal right to those services, transportation, nutrition and lunch provisions, as well as any after - school recreational program in order to keep from losing skills both academic and social. 

Secondly, the misconception that ESY is just a baby-sitting service costing taxpayers ridiculous sums of money is false. I often taught during the school breaks because my kids needed the continuity and it was such a time of growth for them that I wanted to be there to guide that growing period. Also, it was an opportunity to introduce some of the topics student would be learning in their next school year. Every lesson, every day was IEP goals oriented and grade-level-curriculum based. Sometimes disguised as a nature walk or an art class, or building a bot. Smiles.
 
The 1997 amendments to IDEA also state that public agencies must be ‘first-payors’ and others as last resort. Also that private, parochial, charter and other private sites can contract with other agencies to provide services. If a disabled child’s parents have to remove their child from a public school because that school fails to provide FAPE, then parents may start a ‘due process’ hearing and possibly be awarded reimbursement for any costs. (Note: Due Process is every citizen’s constitutional and legal right to be treated fairly – basically saying. But, if  the parents do not win, they must cover the legal fees involved in filing and pursuing the Due Process action.)
 
REFERENCES used are:
 
Bilaver, L., Cushing, L., & Cutler, A. (2015). Prevalence & Correlates of Educational Intervention Utilization Among Children with Autism Spectrum Disorder; Journal of Autism & Developmental Disorders V46; p.561-571.
 
Turnbull, III, H., Wilcox, B., Stowe, M. (2002). A Brief Overview of Special Education Law with Focus on Autism; Journal of Autism & Developmental Disorders V32:5; p.479-493.

I Know You’re In There: Winning Our War on Autism by Marcia Hinds, 2014 eBook Edition; Extended Review with < My Thoughts > by Sara Luker
 
Excerpts from the Author’s Note –

(1% indicates Focused Excerpt location in the Kindle version of the book, instead of page numbers.)

1%       From: Marcia –
 
I am an expert at only one thing and that is being Ryan’s mom.
 
Even so, I made a lot of mistakes along the way. 
I fought doctors when they were right.
I went along with snake oil salesmen when I shouldn’t have.
 
The thing I did right is that I never gave up.
 
When it comes to the treatment of autism one size does not fit all. You must find your own path and follow it, and God help anyone who gets in your way.
 
End of excerpts from the Author’s Note
 
< My Thoughts >   To really appreciate how open and candid, approachable and helpful Marcia Hinds is, check out this video… Smiles.
 
AutismOne Media                   Is recovery possible? Speaker: Marcia Hinds
Published on May 30, 2018
https://www.youtube.com/watch?v=18v6W03456Q
 
Excerpts from the Forward by My Son, Ryan Hinds –
 
2%       From: Ryan –
 
My mom asked me to read the book to make sure I was okay with the things she wrote. I wish I could forget all the horrible things that happened and everything to do with autism. Who really wants every detail of their childhood out there for the world to see? 
 
Some will say I never had autism or maybe that I was only mildly affected. I wish that were true.  …I know my story is important to help others realize this disease is medical, treatable, and surmountable. I was lucky I had parents who fought back.
 
End of excerpts from the Forward by My Son, Ryan Hinds
 
Excerpts from the book’s Preface –
 
2%       Ryan graduated magna cum laude and went on to earn a master’s degree with distinction in engineering. NASA awarded him a scholarship for his post-graduate studies as well as a paid summer internship. Ryan is presently a systems engineer at a major aerospace company. He lives in his own apartment just steps from the Pacific Ocean. He goes out with friends and surfs anytime he can. Sometimes I have to pinch myself, because what I wanted most for him actually happened. He is happy, has a great group of friends and a very active social life.
 
3%       One of the hardest things to deal with when you have a child with autism is that you don’t know the rest of the story. You have no clue how things will turn out. There is no magic pill to cure our children. Trust me, I searched everywhere for it. But, I did find many snake-oil salesmen with the latest cures who took our money and then asked for more. My husband and I had to choose. We could let Ryan drift forever into his own world or drag him kicking and screaming into ours. Choosing was the easy part. How to accomplish his recovery was our twenty-year challenge and what this book is about.
 
End of excerpts from the book’s Preface
 
Excerpts from Marcia’s book –
 
4%       I worried something might be seriously wrong with my son. He confused and frightened me when he did these crazy things. Impulsivity and rigid response weren’t unusual for Ryan…I had to save him from himself. No one ever told us autistic children have trouble moving from the now to whatever happens next. 
 
At other times, Ryan wowed me with his intelligence. I knew he was smart. At only two, he spent hours playing computer games and could operated any piece of electronics in our house. He knew all his letters and numbers. Even though he couldn’t say them.
 
When it came to anything that captured his interest, his levels of concentration and comprehension were phenomenal.  But his interests were limited and a bit odd. Ryan loved objects, but did he love us?
 
What I didn’t know was how many other parents were also having similar thoughts about their unusual children, and that we were already card-carrying members of the A-Club.
 
Most of our days were spent trying to figure out what Ryan wanted or needed.
 
Nothing worked. We were like contestants on a game show where only Ryan knew the rules. 
 
I couldn’t listen to the things the experts told me Ryan would never do. I knew Ryan was in there. There were times I saw him clearly. Other times, I only caught a glimpse of the kid he would someday become. I couldn’t give up on him. I wasted valuable time not getting him the help he needed.  If you think there is something wrong, there probably is. 
 
Like your shadow, autism is yours for life. To complicate things further, a child may have more than one diagnosis. Children with autism have multiple medical conditions…some people in the field are starting to call it “autisms.”
 
< My Thoughts >   “Children with autism have multiple medical conditions…”
 
Our Sonny was soooo clumsy. He would stumble, drop down for no reason, then pop-up and stagger off. It wasn’t until he had a Gran Mal seizure that we found out that he had epilepsy. Then it was several years before a very smart neurologist told us that his staggering around and dropping down were ‘atypical absence seizures’ and ‘atonic’ or ‘drop’ seizures, part of a Lennox-Gastaut syndrome. Who knew?
 
According to Crumrine (2001), ‘Atypical absence seizures’ look as if the person has just ‘checked-out’ for a second or two. They will not respond to environmental stimuli. An ‘atonic seizure’ is a brief loss of posture. Looks like a head nod or more observable, a fall to the ground, or a stumble as knees give out. She also describes this Lennox-Gastaut syndrome as having at least two seizure types, including ‘tonic’, ‘atonic’, and/or ‘atypical absence seizures’; along with ‘cognitive impairment’ and often times lack of the ability to learn language, or being nonverbal.
 
Some nights, Sonny would fall out of bed, become incontinent, and sleepwalk. This too, was part of the syndrome. Dr. Crumrine refers to this as possible ‘tonic’ seizures which occur during nighttime sleep. Another ‘nonconvulsive’ observable events are sudden changes in ‘mental status’, eyelid fluttering, facial flushing, staring at hands and/or feet, associated ‘drooling’ and seemingly to be in a ‘stuporous’ state.
 
This is typical for Sonny. He can be right in the middle of something he has done a million times and then looks at you as if he doesn’t know who you are, where he is, or what he’s doing. We tell him, “Hey, that was a seizure… you’re okay now.” That seems to satisfy him and we guide him back to the activity he was interrupted from.
 
The doctor tells how a Ketogenic diets of high-fat, low-carbohydrate/sugar-free foods can serve as an additional treatment, but not ‘first-line’ because meds are needed for that. She goes on to say that “Lifetime care for these children and adults needs the combined support of services from nurses, physicians, teachers, social workers, psychologists, family and friends.” Whew!
 
Sonny was fortunate to have a neurologist who recognized his syndrome, knew it wasn’t all autism. He also knew that the FDA had just approved a new drug for patients with Lennox-Gastaut syndrome. Lucky for us, the planets had aligned and with Sonny now at age 29 years, our lives became easier with this neurologist and this medication.
 
Yet another clinical review states that while the subject remains poorly understood and controversial, there seems to be a ‘relationship’ between autism, epilepsy, and regression. I mention this, and I’ve carried on a bit about epilepsy only because I wish to make a statement about why sometimes it’s not always ALL AUTISM.
 
The findings of a 2017 study conclude that other things like motor and speech development are commonplace with autism. But also, psychiatric symptoms: Attention Deficit Disorder, Attention Deficit Hyperactivity Disorder, conduct disorder, oppositional defiant disorder, generalized anxiety, depression, bi-polar, and even schizophrenia can ‘co-occur’ with autism. Just saying.
 
32%     Doctor Goldberg told us on that first visit what I already knew to be true. Ryan didn’t really have autism, even though it sure looked like it. I didn’t really understand what Neuro-Immune Dysfunction Syndrome (NIDS) meant back then. I didn’t care. I had HOPE! My kid is sick and there is hope that he can get better. Finally, I found someone who not only wanted to help Ryan, but also had a way to do it.  And he didn’t think I was crazy – at least not yet.
 
33%     It was the NIDS approach combined with intensive rehabilitation that helped my son recover from autism. Recovery began by rebuilding his immune system. But just doing the NIDS protocol without any intensive rehabilitation wouldn’t have been enough. Years of behavioral and educational interventions were necessary to correct Ryan’s deficits in speech and social skills.
 
36%     Dr. Goldberg had strong views on diet then, and his diet restrictions have become even stronger over the years. He was adamant that extreme diets don’t cure autism and Is equally adamant that his dietary requirements are not extreme. 
 
In my Doctor Mom opinion, diet is not the only thing that we need to control to help them heal. Environmental allergies to pollen and other things are sometimes overlooked. Are you using a laundry detergent they are allergic to? Is there mold in your basement” the things that can affect their immune system are endless.
 
37%     Ryan’s treatment with Dr. Goldberg lasted many years, and over these years Dr. Goldberg and I had intense arguments. Over the years of our relationship, many times our conflicts have revolved around his determination to cure Ryan one-step-at-a-time and my determination to make him fix Ryan NOW!
 
39%     When my NIDS-treated kid started to wake up and develop again, ABA compliance training and consistent parental guidance were needed to teach consequences for inappropriate behavior. Discipline for Ryan at age five was similar to discipline for a typical two-year old. You have to meet your child at the age they are developmentally.
 
49%     Restricted interests. What so many teachers don’t realize is the learning potential those annoying interests hold.  Pam designed speech drills about sharks. He loved the computer, so she used it to teach the importance of waiting for his turn.
 
51%     Children live in two worlds…home and school. At home, Ryan always had me and the rest of his family to guide and protect him. At school…if you want to be a successful advocate for your child, you have to know about IEPs (Individual Education Plan).
 
52%     The autism label isn’t what it used to be. I didn’t want to believe Ryan had autism and I didn’t want anyone to ever say or even think he did. Pervasive Development Disorder (PDD) sounded so much better to me than autism. That was a big mistake on my part. The autism label opens the door to get the services you child needs. The term ‘NIDS’ won’t do it.
 
< My Thoughts >   “The autism label opens the door to get the services you child needs.”
 
Ha, et al. (2012) remind us that ‘misdiagnosis’ was prevalent in the late 1900’s and early 2000’s, and ‘over-diagnosis’ is now the ‘great concern’ of parents and some professionals, lack of ‘early identification’ does not serve us well either. They say that in countries like Vietnam, health service providers are forced to adopt a pragmatic response in order to meet the needs of the children and parents seeking assessment and diagnosis.
 
Yes, autism is global. Private intervention centers in Hanoi are few, but they are available to a minority of wealthier families. While, they continue, rushed diagnosis with assessment tools used from Western countries sometimes resulted in and inaccurate diagnostic label, services were not available without autism identification. In addition, they believe that an accurate count was necessary in order for the country to provide better assessments, diagnostic and therapeutic services.
 
Moore (2008) asks “How much difference does a ‘label’ make?” Some parents don’t want their child considered ‘handicapped.’ “I think autism is exactly that, a ‘handicap’. A difference that disadvantages you when playing the ‘game of life.” I don’t like ‘disabled’ because that suggests you were once ‘abled’, but now you are not. I don’t like autism referred to as a ‘disease’ because it’s not catching.
 
“I am convinced, then of the accuracy of their diagnoses. We openly use the word ‘autistic’ at home. I have never hidden it from them, nor have their teachers. Having my boys ‘labeled’ has many practical advantages. None of the sources of help would have been available to me if the boys had not been formally diagnosed. And, it helps me explain why 4-year-old Sam is still in nappies. Or, why big brother George sometimes twiddles his fingers in front of his eyes.”
 
52%     Today, the DSM-V (that big manual used to define mental disorders) has simplified the diagnosis to Autism Spectrum Disorder. You either have it, or you don’t. However it still doesn’t work that way in IEP meetings.
 
The IEP includes the district’s idea of a Free and Appropriate Public Education (or FAPE). Remember you don’t have to accept the entire IEP proposal. You can consent to part of the IEP and reject other sections. You can do this by adding an additional page after the signature page. There, simply list the items you accept… Provide the team with dates you are available to meet again to discuss it…
 
< My Thoughts >   “IEP changes… legal document… time sensitive… team members… “
 
As a special education teacher, a parent of an autistic child, and a special education team member, I could go on and on about a student’s Individual Education Plan. Here is a ‘cut-to-the-chase suggestion from this website… www.understood.org/IEP_Goals. They suggest that you measure your child’s IEP Goals against the acronym SMART, which stands for Specific, Measurable, Attainable, Results-Oriented, and Time-bound.
 
The goal for Reading class would say: Name will be able to read grade-level non-fiction stories at ‘so-many-words’ per minute with 2 or fewer errors. Or, for math class: Name, with the aid of a simple calculator will be able to add and subtract 3-digit numbers, with 80% accuracy. And, by mid-term, Name will interact appropriate during a group activity, in 4 out of 5 opportunities.
 
Added to that, I usually provided a chance for a follow-up meeting to review goals in six weeks, or so. That way if the calculations were way off, between the child’s ability (and motivation) and what was actually probably going to happen… then we could change things up. Smiles.
 
52%     When things are in writing and documented, it usually prevents misunderstands about what “…is necessary to meet your child’s educational needs.” Before each IEP meeting I would send the entire team a note or email about what Frank and I though Ryan needed to be successful at school. They were never caught off guard. My notes made everyone on our IEP team think outside the box. For example, when Ryan needed adaptive physical education, we asked if these services could be delivered before school instead of interrupting his school day.
 
< My Thoughts >   “…these services could be delivered before school.”
 
In many school districts, qualified persons who provide specialized services are itinerate. They serve many students in many schools throughout their day. In other words, they are on a very tight and demanding schedule. Chances are that to ask them to rearrange their traveling schedule to provide services before the school day starts may be unreasonable.
 
Another problem is that when students are receiving services before the school day starts it makes them stand out. And, not in a good way. Thinking that I had the perfect solution for keeping a middle school student in the classroom, I asked the Occupational Therapist to hold their session on campus before school. This was a big mistake. My student was seen by his peers as different from the rest of the crowd. Prior to that, students weren’t really aware that he needed help. Sometimes, you just can’t win… but, as Marcia believes… that does NOT mean you stop trying.
 
57%     Facilitating Ryan’s school friendships was probably my smartest move. Many moms of children with autism recognize the trade-off of doing all the work to organize and implement a play date in order for it to happen.
 
58%     Anything we thought he might struggle with at school, were learned in advance at home. Marcia wrote (in Ryan’s daily notebook home): I appreciate you sending the song and book list. We will teach him (the songs).  Ryan surprised me one day when he started singing a song that I hadn’t taught him. He learned it without any pre-teaching, just like the other kids. That was a major cause for celebration.
 
59%     We used whatever worked to help Ryan progress. Sometimes that meant combining ABA with other methods. A modified version of ABA worked even better for my son. By this time Ryan didn’t always need only immediate rewards. Ryan learned to perform this behavior all week.
 
68%     The good news was that NIDS plus school and home therapies were helping him with the real world. The bad news was that now he was recovered enough to realize he wasn’t included, and he didn’t really fit in this new world. The worst news was that he wasn’t yet able to learn the complex social skills that were required to connect with other kids. (He) was never invited over or didn’t have anyone who wanted to sit with him at lunch.
 
69%     We looked for other ways to help Ryan. We put him in an after-school chess club with kids from his class.
 
< My Thoughts >         “ We put him in an after-school chess club with kids from his class.”
 
Sometimes schools can offer ‘afterschool’ chess clubs, or, a lunchtime chess club meeting in a teacher’s room. The Physical Education Teachers or the Special Education Teachers often have classroom aides who can supervise and help out. I like a lunchtime meeting because that solves the problem of “Who will eat lunch with me?” But, it’s often too short a time to complete a game. You can take a photo of the board, though, and set it up the same way next time. After-school programs require and ‘After-school’ bus ride home. And… Special Ed kids often need to ride the ‘short’ bus with an aide, but they seldom stay for an extended day. Hmmm.
 
73%     I made the mistake of thinking since he sounded smart, he was socially smart. Before middle school started, I had Ryan’s special education file sealed. That didn’t really work. Ryan still didn’t fit. His teachers had no knowledge of his past history since I had his file sealed. He just looked like a disorganized kid who often left his assignments as home and had to call his mommy to bring them. If his teachers had know… they probably would have been impressed with all he had accomplished.
 
< My Thoughts >         This is on a parallel with never having been ‘diagnosed’ nor ‘labeled’…
 
Bargiela, et al. (2016) bring to our attention that many times girls aren’t diagnosed until later in their school years. Researchers say that females have not received ‘support’ equivalent to that of their male counterparts. Then, once they are ‘labeled’ teachers may misunderstand or question the diagnosis.
 
Cleverly, girls ‘pretend to be normal’ by wearing a mask, memorizing social behaviors from social media or pleasing and appeasing in order to blend in. Unfortunately, this brings up how severly ‘under-recognition’ can risk the wellbeing and educational opportunities for girls and women on the autism spectrum.
 
75%     Hitting was our dirty little secret. I never told anyone except Frank about this aggressive behavior. The hitting stopped after I became more stubborn than my son and became more serious about enforcing consequences. Disrespect from either of my kids was my hot button. He finally learned the consequence of his behavior was the loss of more computer time. Later, when I asked him why he stopped hitting me he said it was because I took away his beloved computer and wouldn’t give it back until he behaved the right way.
 
The bullying at his school was out of control. Somehow the bullying had to stop. I marched into the principal’s office to ask what he planned to do. He assured me he would look into it. But this principal usually went down the path of least resistance. Instead of interrogating the tormentor, he called Ryan into his office for ‘a talk’.
 
The school culture needed to be fixed and not just for my kid. Ryan desperately wanted to escape. He continually asked if we could move to California. His sister was already there in college. Ryan said if we moved we’d be closer to Megan, as well as the rest of our extended family.
 
76%     We finally left Minnesota after we came to the conclusion that twenty Minnesota winters were twenty too many, and we were done with the bullying. Ryan set-out to reinvent himself. He already had a plan for his new life in California.

He got his driver’s license after we moved there and after many close encounters with cars in parking lots.
 
77%     I started by planting the seed in Frank’s head that we needed to buy a proper California car. I told my husband a used convertible might be a fun choice. The real reason in wanted the car was it looked cool and later Ryan would have a babe magnet. I held my breath every time Ryan drove. But, I realized it takes two to make a car accident. Surely the other driver would be paying attention and maneuver to miss Ryan.
 
78%     Eventually, I decided I had to do something if my son was going to get into college. I disclosed Ryan’s past to his high school counselor. Mr. Lisowski suggested we put a 504 Plan in place to give Ryan extra time on tests. But a 504 meant we needed to inform all his teachers about the reason for the accommodation.
 
The 504 was granted, and it did help Ryan with his test anxiety.
 
79%     For a kid Ryan’s age, a normal life was about going to college, so that became my new focus. The choices our family made, some were good, some not so good. Ultimately, we were successful, but we were not always knowledgeable. We just tried to make the best decision at the time for Ryan.
 
The college admissions process reminds me more of a beauty pageant than an academic competition. It seems like it’s not enough to be smart, you have to have a great song and dance act as well. Kids need to participate in academic and community activities to make them more desirable. What I didn’t realize at the time was how important each of these activities would be to further Ryan’s personal development and growth.
 
81%     Ryan thought he was attending college to earn a degree in engineering. He excelled in all his courses, but gained so much more that just a diploma. He graduated with a degree in life. College taught Ryan how to be Ryan.
 
86%     Even after you begin climbing out of the abyss; it is not a constant, steady climb. Two steps forward, one step back. But we kept going because we had hope since ther was always some forward movement.
 
92%     We can never give up! We must continue the search until we find the answers for ALL children. That is the way to win our war against autism. We must win, because there are too many kids not getting better every day.

​End of this excerpt Focused on Autism & Law BLOG.
 
REFERENCES used in < My Thoughts > are:
 
Bargiela, S., Steward, R., Mandy, W, (2016). The Experiences of Late-diagnosed Women with Autism Spectrum Conditions: An Investigation of the Female Autism Phenotype, Journal of Autism & Developmental Disorders; V46; 2770-2773.
 
Crumrine, P. (2001). Lennox-Gaustaut Syndrome; Journal of Child Neurology; V17:1
 
Ha, V., Whittaker, A., Roger, S. (2012). Assessment & Diagnosis of Autism Spectrum Disorder in Hanoi, Vietnam; Journal of Child & Family Studies; V26, p1334-1344.
 
Moore, C. (2008). Thoughts About the Autism Label: A Parental View; Journal of Philosophy of Education; V42:3-4.

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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