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.
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.
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