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I Know You're In There: Winning Our War Against Autism by Marcia Hinds (2014). Extended Book Review with <My Thoughts> by Sara Luker
Excerpts from the book – (1% indicates location in the Kindle version of the book, instead of page numbers). |
Excerpts from the Author’s Note –
1% 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.
Excerpts from the Forward by My Son, Ryan Hinds –
2% 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% The personal anxiety, stress, and social isolation that results from living on Autism Island is overwhelming…but we can’t give up on our children, because sometimes we catch a glimpse of the kid we know is in there.
Ryan was different from other children his age. We knew something wasn’t right. My son was diagnosed at age four. That day changed everything. The doctor gave him and us a life sentence. At first all I could do was cry.
We were told there was no recovery from autism. There was no cure. There was no hope. But you can’t feel sorry for yourself or your child for too long. You don’t have time. Your kid needs you.
Your child will not come out of this by himself. You have to go in there and get him. This book questions everything we were ever told about autism. This book shows you how to fight back and not accept the truths associated with an autism diagnosis.
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 Hind’s book –
3% Ryan craved sameness. I didn’t understand this need. Frank, our daughter Megan, and I enjoyed being spontaneous. We loved to seize the moment, go with the flow, take chances. This kind of unencumbered lifestyle terrifies children with autism.
We just thought Ryan was difficult and rigid. We thought with enough time, he would become spontaneous like us. We were wrong. Ryan’s never-ending need for sameness was strong enough to compel him to jump from a moving vehicle…a near disaster.
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?
When it came to interacting with people, Ryan didn’t seem to care. He paid attention to us only when we had something he wanted, or when he wanted to talk about one of his current interests over and over again. The exception to Ryan’s social disinterest was the dog. He also spent an inordinate amount of time conversing with the shiny coat hooks in his bedroom closet.
Note: More about 'Red Flags', go to MENU for – Know Autism, Know Your Child with < My Thoughts > by Sara Luker. Read on this website under – UNIT 1 – How Will I Know It's Autism? CHAPTER 1 – Checklists, CHAPTER 2 – Red Flags.
To alleviate my concerns, I convinced myself that Ryan might be the next Albert Einstein or Thomas Edison. I focused on anything that calmed my fears. What I didn’t know was how many other parents were also having similar thought 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. Ryan was my second child, so I rationalized…my son would be fine in his own good time. In my quieter moments, I wondered if it was my fault Ryan was so different.
Ryan was nothing like my daughter, and different in a way that didn’t feel okay. Even as a baby Megan smiled at anyone and everyone.
< My Thoughts > “…nothing like my daughter…”
In the world of ‘autism denial’, parents often only reach ‘reality’ when there is a sibling or another child to compare the autistic child to.
5% I wasted valuable time not getting him the help he needed. If you think there is something wrong, there probably is. Don’t do what I did and waste time pretending your child is normal. Everything you read and hear about autism is not necessarily true.
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.”
Successful treatment of autism remains the same- address the medical issues and teach the child what was missed when he was too ill to learn. It sounds so simple…until you have to do it. But some kids can and do get better.
Like us, you will hit many roadblocks and detours along this difficult highway. There aren’t many rest stops along the way or any places where you can ask for directions. It is hard to find any place that offers sustenance and encouragement to keep you going. Exhaustion and discouragement are an integral part of the journey. There isn’t a one-stop center that provides what every child needs for recovery. You must develop your own programs melding medical, behavioral, and educational interventions. The important thing is to stay on the road no matter how long it takes or how tired you get. These are our children, so we must never give up.
6% Today, more than ever, we need a new way to help these children. Their behaviors are not simply autistic, but symptoms of illness. Children who get effective medical treatment can get better. When effective behavioral and educational interventions are used in conjunction with medical treatment, problem behaviors diminish.
This is why Ryan’s story matters. Ryan’s journey shows us a new road to travel – the road to recovery.
8% Ryan was the toddler from hell! Normal activities of daily life were now confrontations. Mommy and Me class was not a success. My son didn’t interact with the other children and stood out as behaviorally challenged. Since I couldn’t make Ryan do what he was supposed to, we quit baby school.
9% Ryan struggled with each of the domains that were characteristic of autism. He was frustrated and already stranded on Autism Island, hidden from his family.
We didn’t notice that Ryan was missing many of the essential parts of communication and didn’t have any 'small talk'. He didn’t use what speech therapists call 'minimal encouragers' such as saying, “Uh huh” or non-verbal communication like a head nod. He seldom used language to show interest in anyone else. We should have worried.
< My Thoughts > ”…communication...”
Communication is a big need for both parent and child. Most verbal, and non-verbal children can learn basic 'baby sign' language, and/or assistive technology devices. Finding a way to communicate prevents tantrums.
Sonny drags people to where or what he wants. When we were able to have him in our home as a foster child, we encouraged him to use a low technology, double "AA" device called ‘Cheap Talk’.
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These are images Augmentative and Alternative Communication (AAC) devices, which can be recorded to say the words the pictures represent. You insert the pictures you want, either actual photos, or graphic pics. Sonny's first device only had space for four pictures, like the device on the left. Eventually, he was able to use a 12 word device. These were portable, so we took it with us in the car.
Use the signs that your child needs most. In the beginning he like ‘more’ and ‘finished’. ‘More’ because he was always hungry or thirsty, and ‘finished’ if he didn’t like what you were offering him to eat or drink. He will also sign ‘finished’ if he doesn’t like a task you are asking him to do. He may give it a cursory try, then sign ‘finished’ or ‘broken’. When we use his assisted /alternative communication (AAC) we also sign the word. Sonny uses the sign for ‘finished’ or ‘broken’ interchangeably. ‘Broken’ is signed as if you were breaking a pencil in half. So, we ‘say’, ‘sign’, and ‘push the AAC button for each word. Sonny understands each, but only chooses to use the ones that he likes.
Another method of communication for Sonny are his interactive children’s board books. Sonny has his favorites to use for special communication. One of the Dora books has a button which when pushed says, “Vamanos"! ("let’s go!”). When pushed repeatedly, he lets everyone know he is tired of sitting in the waiting room. He interchanges with the Mickey Mouse book button which when pushed says – “Oh Boy! Come on! Let’s GO!” Whatever works! We let our guy communicate with everyone within earshot.
Note: For further information on Communication, go to MENU for – Know Autism, Know Your Child with < My Thoughts > by Sara Luker. Find on MENU, under – UNIT 3 What Is Most Concerning? CHAPTER 2 – Speech & Language Communication (Including 'Nonverbal' & assisted/alternative communication).
12% We were no longer just his mother, father, and sister. Instead, we were Ryan’s twenty-four-hour bodyguards. We were tired and we were fearful. We never recognized how bad the situation had become. We helped prolong his stay on Autism Island.
26% We listened to many people who had numerous and varied ideas of how to help us. These supposed experts drained our pocketbooks and, even worse, wasted valuable time. After expert chasing for more than a year, I finally settled down and did my homework about the validity of any particular treatment. I learned to use my head instead of my fear. There was no miracle cure for autism.
We thought my son might have allergies, so we saw Dr. Michael Goldberg who determined that my son was highly allergic to milk and would later discover that he had a newly identified retro-virus which could be causing the immune dysfunction that was apparent on other tests. This virus had been found in other “autistic” children and could be having negative effects on his brain. My son has changed so dramatically in a two month period with Dr. Goldberg and the behavioral therapy that we have felt joy now comparable to nothing else we can describe.
What harm would it do to make an appointment to see Bryce’s miracle worker? That call to Dr. Goldberg’s office changed Ryan’s life forever. Luck and timing were very much a part of our son’s recovery.
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.
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.
Note: For further information on Dietary Approaches, go to MENU for – Know Autism, Know Your Child with < My Thoughts > by Sara Luker. Find on MENU, under – UNIT 7 – 0 Who May Help? 7 – 3 OTHER THERAPIES; Section 3: Introduction, Medication & Dietary Approaches.
Goldberg, M. (2024) explains that The Goldberg Approach ™ is based on treating the real disease process that is behind “autism” today. That the neuro-immune system and its interaction with the endocrine system and other body systems are incredibly complex.
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.
His strange autistic behaviors were ingrained. He had done them all day long for years. I was told these behaviors helped him cope with our unpredictable and confusing world. Still, the way he acted didn’t make sense to us or anyone else.
46% Sometimes, I feel guilty because Ryan is okay and having a wonderful life. This should be the outcome for all children who are ill with autism. I often question why some of our kids who have amazing parents and do all the right things, don’t fully recover.
Could it be that their children’s immune systems are just too compromised? Or was the doctor working on their child’s immune issues not addressing the real problem? I pray that one day we will know.
< My Thoughts > “…not addressing the real problem?”
Parents who do all the ‘right’ things, but may not be getting the help, and support needed from the professional community.
Thayer, N., Marsack, C., et al. (2024) examined a study about parenting autistic children from birth through adulthood. Some of these parents in the study felt that the ‘professionals’ they encountered were not very accommodating to their child’s autistic differences and not tolerant of their autistic traits. Parents felt they were facing prejudice and barriers in the social community, and unprofessional attitudes towards their autistic child in the ‘professional’ community.
Many parents related that the ‘professional’ community did not always agree. They did not treat their child as having a brain variation present at birth, which was causing developmental differences in communication, behavior, and learning. Instead of feeling empowered, some parents were made to feel marginalized and more isolated by the ‘professionals they encountered. Parents were not made to feel capable, nor were they encouraged to set hopeful priorities and goals for their child’s future.
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.
74% Being rejected and bullied caused Ryan to channel his energy away from social interaction into academic achievement. If bullies were going to call him a nerd, he may as well be the best nerd ever.
Although my son is leading a full and productive life, he is not cured. Ryan is still dependent on medications to help his immune system work optimally. For the type of autism Ryan had, our version of the NIDS protocol and our modified ABA program worked. Please remember that this medical treatment only worked well because it was paired with extensive behavioral and educational therapy. My goal is that someday Ryan will be medication free.
Note: For further information on Applied Behavior Analysis (ABA) therapy, go to MENU for – Know Autism, Know Your Child with < My Thoughts > by Sara Luker. Find on MENU, under – UNIT 7 Who May Help? 7 – 1 OTHER THERAPIES, Section 1: ABA, CBT, DIR, OT, PECS.
92% My latest leap (of faith) has been into the world of genes and autism.
Researchers have identified specific genes whose cellular pathways and function may directly contribute to the behaviors we now label as autism in some children.
Children who have one or two gene mutations may progress with targeted medical intervention.
Autism is complex. We all want that magic bullet. We must continue to search until we find the answer for all children. That is the way to win our war against autism.
Reference:
Goldberg, M. (2024). Documenting Hope. Retrieved online from –https://documentinghope.com/practitioners/practitioner/michael-goldberg-md/
Thayer, N., Marsack, C., et al. (2024). Parental Perceptions of Community & Professional Attitudes Toward Autism. Retrieved online from – Journal of Autism & Developmental Disorders: https://link.springer.com/article/10.1007 /s10803-024-06554-5
Another method of communication for Sonny are his interactive children’s board books. Sonny has his favorites to use for special communication. One of the Dora books has a button which when pushed says, “Vamanos"! ("let’s go!”). When pushed repeatedly, he lets everyone know he is tired of sitting in the waiting room. He interchanges with the Mickey Mouse book button which when pushed says – “Oh Boy! Come on! Let’s GO!” Whatever works! We let our guy communicate with everyone within earshot.
Note: For further information on Communication, go to MENU for – Know Autism, Know Your Child with < My Thoughts > by Sara Luker. Find on MENU, under – UNIT 3 What Is Most Concerning? CHAPTER 2 – Speech & Language Communication (Including 'Nonverbal' & assisted/alternative communication).
12% We were no longer just his mother, father, and sister. Instead, we were Ryan’s twenty-four-hour bodyguards. We were tired and we were fearful. We never recognized how bad the situation had become. We helped prolong his stay on Autism Island.
26% We listened to many people who had numerous and varied ideas of how to help us. These supposed experts drained our pocketbooks and, even worse, wasted valuable time. After expert chasing for more than a year, I finally settled down and did my homework about the validity of any particular treatment. I learned to use my head instead of my fear. There was no miracle cure for autism.
We thought my son might have allergies, so we saw Dr. Michael Goldberg who determined that my son was highly allergic to milk and would later discover that he had a newly identified retro-virus which could be causing the immune dysfunction that was apparent on other tests. This virus had been found in other “autistic” children and could be having negative effects on his brain. My son has changed so dramatically in a two month period with Dr. Goldberg and the behavioral therapy that we have felt joy now comparable to nothing else we can describe.
What harm would it do to make an appointment to see Bryce’s miracle worker? That call to Dr. Goldberg’s office changed Ryan’s life forever. Luck and timing were very much a part of our son’s recovery.
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.
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.
Note: For further information on Dietary Approaches, go to MENU for – Know Autism, Know Your Child with < My Thoughts > by Sara Luker. Find on MENU, under – UNIT 7 – 0 Who May Help? 7 – 3 OTHER THERAPIES; Section 3: Introduction, Medication & Dietary Approaches.
Goldberg, M. (2024) explains that The Goldberg Approach ™ is based on treating the real disease process that is behind “autism” today. That the neuro-immune system and its interaction with the endocrine system and other body systems are incredibly complex.
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.
His strange autistic behaviors were ingrained. He had done them all day long for years. I was told these behaviors helped him cope with our unpredictable and confusing world. Still, the way he acted didn’t make sense to us or anyone else.
46% Sometimes, I feel guilty because Ryan is okay and having a wonderful life. This should be the outcome for all children who are ill with autism. I often question why some of our kids who have amazing parents and do all the right things, don’t fully recover.
Could it be that their children’s immune systems are just too compromised? Or was the doctor working on their child’s immune issues not addressing the real problem? I pray that one day we will know.
< My Thoughts > “…not addressing the real problem?”
Parents who do all the ‘right’ things, but may not be getting the help, and support needed from the professional community.
Thayer, N., Marsack, C., et al. (2024) examined a study about parenting autistic children from birth through adulthood. Some of these parents in the study felt that the ‘professionals’ they encountered were not very accommodating to their child’s autistic differences and not tolerant of their autistic traits. Parents felt they were facing prejudice and barriers in the social community, and unprofessional attitudes towards their autistic child in the ‘professional’ community.
Many parents related that the ‘professional’ community did not always agree. They did not treat their child as having a brain variation present at birth, which was causing developmental differences in communication, behavior, and learning. Instead of feeling empowered, some parents were made to feel marginalized and more isolated by the ‘professionals they encountered. Parents were not made to feel capable, nor were they encouraged to set hopeful priorities and goals for their child’s future.
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.
74% Being rejected and bullied caused Ryan to channel his energy away from social interaction into academic achievement. If bullies were going to call him a nerd, he may as well be the best nerd ever.
Although my son is leading a full and productive life, he is not cured. Ryan is still dependent on medications to help his immune system work optimally. For the type of autism Ryan had, our version of the NIDS protocol and our modified ABA program worked. Please remember that this medical treatment only worked well because it was paired with extensive behavioral and educational therapy. My goal is that someday Ryan will be medication free.
Note: For further information on Applied Behavior Analysis (ABA) therapy, go to MENU for – Know Autism, Know Your Child with < My Thoughts > by Sara Luker. Find on MENU, under – UNIT 7 Who May Help? 7 – 1 OTHER THERAPIES, Section 1: ABA, CBT, DIR, OT, PECS.
92% My latest leap (of faith) has been into the world of genes and autism.
Researchers have identified specific genes whose cellular pathways and function may directly contribute to the behaviors we now label as autism in some children.
Children who have one or two gene mutations may progress with targeted medical intervention.
Autism is complex. We all want that magic bullet. We must continue to search until we find the answer for all children. That is the way to win our war against autism.
Reference:
Goldberg, M. (2024). Documenting Hope. Retrieved online from –https://documentinghope.com/practitioners/practitioner/michael-goldberg-md/
Thayer, N., Marsack, C., et al. (2024). Parental Perceptions of Community & Professional Attitudes Toward Autism. Retrieved online from – Journal of Autism & Developmental Disorders: https://link.springer.com/article/10.1007 /s10803-024-06554-5