Making Peace with Autism: One Family’s Story of Struggle, Discovery & Unexpected Gifts, by Susan Senator, eBook 2006; an Extended Review with < My Thoughts > by Sara Luker
Excerpts from the book – (3% indicates location in the Kindle version of the book, instead of page numbers).
< My Thoughts > Susan Senator is the mother of three boys, the oldest of whom has autism. She is also the author of the Autism Mom’s Survival Guide (for Dad’s too!): Creating a Balanced & Happy Life While Raising a Child with Autism (2011) and Autism Adulthood: Strategies & Insights for a Fulfilling Life (2016); among others.
3% Making Peace with Autism is the story of a family – a husband, wife and three sons – and our struggle to incorporate our oldest son’s autism into our lives. With this book I hope to convey that despite the tremendous challenges that autism brings, you can find happiness as a family – even if you don’t find a miracle cure. Here’s how we’ve done it.
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.
6% I talked and read to the baby in utero. I read all kinds of mother-to-be books. We were so well prepared that we didn’t think anything could go wrong. This illusion was deepened by our comfortable backgrounds and the fact that we lived in a society that promoted the idea of family life as a Hallmark card. I dreamed about my baby, yearned for his arrival, but in a straight-out-of-Hollywood way.
7% Nat was a beautiful baby, with tufts of white blond hair and violet eyes. A docile infant, he was so enchanting that people often stopped me to admire him. My first moments with him were ecstasy. He was all potential. Autism was not yet even a cloud on the horizon. But almost immediately, there was the rumble of distant thunder.
At the beginning, the signs were always fleeting, with a now-you-see-them, now-you-don’t quality. Everything I noticed or felt was subtle, flickering, momentary.
All my questions were so easily answered, my fears so quickly dismissed by doctors, family, Ned, and even me.
When did I first know something was amiss with Nat? Almost immediately. Something inside me told me that mothering a newborn was not supposed to feel so flat.
At first the autism came in little bursts, bad moments here and there, sprinklings of disappointment in what he did or didn’t do.
He didn’t actually look at me for any length of time until his fifth day of life, when suddenly his eyes were opened almost absurdly wide. My sister Laura visited us that day. A medical student, and an aunt for the first time, she was thrilled with this chance to bond with a baby, especially mine. Nat was fully alert and experiencing this world and it was a noisy, chaotic place for him. Laura and I noted his wide-eyed stare, thinking it was cute.
During Nat’s first week, I did express a few misgivings about the way he world throw up his hands at the slightest jostling or sound. “Why does he do that?” I asked my sister. It was easier asking her, a med student, than calling the pediatrician, whom I felt I was already calling too much.
That’s his startle reflex,” Laura explained. “Infants have that to protect themselves, to let them know something’s around.” But why did he do it so often? The least little thing would set him off. Arms shooting up, eyes wide. His body would explode in reaction to every sudden move or loud noise. It didn’t seem right to me, no matter what I was told about it.
< My Thoughts > “Arms shooting up, eyes wide, that’s his startle reflex…” Stuck in sensory mode of appearing startled when approached suddenly.
According to Bogdashina (2016), “Many autistic individuals (who use one sense at a time), involvement of other senses can bring sensory overload.” She says, “Autism is a pervasive developmental disorder because it covers so many different areas of cognition. Yet for autistic individuals with sensory problems, the term ‘pervasive’ acquires a different meaning. It is pervasive because sensory problems are with them every minute of every day.” Certain behaviors, which sometimes become ritualistic, serve to help them when perceiving themselves in relation to their environment. A way of reacting that makes them feel safe.
8% Ned’s awakening about Nat was gradual, while my alarm was almost constant, flashing on and off steadily. The first time I left Nat for a few hours with Ned, I felt certain the baby would die with me gone. I called Ned within the first hour of my outing.
When Ned answered the phone, he didn’t sound surprised to hear my voice. “Yeah, he’s fine,” he said. “Really?” I replied in disbelief. “Yeah, Sue, why wouldn’t he be?” He sounded amused but also slightly annoyed about my hysterics.
Even though he’s a computer geek, a mathematician, a numbers guy, he plays around like a dumb jock. When Nat and Ned played, things felt better to me, as if maybe there was nothing wrong, after all. Then, when Nat was five months old, a woman named Merle brought her baby, Quinn over to visit. Quinn was very interested in the world around him – almost ridiculously so. He squirmed and flailed his fat legs. He also made conversational noises. Seeing Quinn added to my concern about Nat and his lack of interest in the world.
9% Even though Nat hit the major developmental milestones on time, such as rolling over, crawling, standing walking, and even speaking his first words, his lack of interest in people and toys would gnaw at me.
It made me want to stuff so much into every interaction, so as to get it all in before he looked away.
As for toys, he would set up his Fisher-Price dolls in a perfect line, but then he would simply stare at them. and suck his thumb. There they stayed on his rug, like little soldiers forever waiting for the call. I would show him how to do things time and time again, but it never took.
< My Thoughts > “I would show him how to do things time and time again, but it never took.”
Perhaps it was too soon, but Susan’s wonderful intuition was at work here. She tried to engage him where he wanted to be; on the floor.
‘Floortime Play-therapy…’ Retrieved from – https://www.stanleygreenspan.com/
‘Floortime’ is a comprehensive program for infants, young children and families facing a variety of developmental and learning challenges. The program is called ‘Floortime’ because you follow the child’s lead, getting down on the floor when they do.
The whole family can learn to join in the child’s world (a little island on the floor), thus leading them to join into the shared world the family lives in. This will help them master their functional and developmental capacities through ‘shared attention’ and by beginning in ‘engagement’.
9% Nat could suck his thumb and stare straight at the ceiling, and block everything going on around him and feel calm again. By then he had apparently learned the defense of blocking out stimuli that were too much for him. But to me, it was the most bizarre behavior.
I felt terrible about Nat’s apparent indifference, so ashamed. Why doesn’t he like anything? I wondered aloud later to Ned. Ned shrugged and repeated his mantra. “He’s different. It’s OK. You’re not doing anything wrong.”
10% “Nat should be able to do more.” Silence. And then “Well, he can’t he’s his own person, that’s all. Don’t compare him to Quinn.”
“I can’t help it. It doesn’t seem right. He can’t play.” “He can play! He just did!” The tension between us grew.
11% Finally Nat began showing us how much he loved books, their predictability and comforting rhythm. Corduroy’s Day was a real turning point. It was momentous for us to realize that Nat could understand stories and be affected by them somehow. Something in his environment, something complex and with the potential to expand his world, was giving him pleasure.
By the time Nat was two, he loved books so much he had begun to memorize them. Our first conversations with him were mostly crafted out of lines from books: If I gave him strawberries, I’d say “Look, Nat, ‘one-two-three-four strawberries,’” from a waterproof bathtub counting book. We began to play fill-in-the-blank with Nat, starting a sentence from a beloved book and waiting for him to finish it.
When we played this way with him, he would reward us with happy book chatter and a wide smile. We found that we could use content from books to explain new concepts to him, too, a process that delighted and comforted him.
For instance we used lines from the book Corduroy Goes to the Doctor to explain that he would have to get undressed, get weighed, and get a shot. “Do I get a shot?” asks Corduroy. “Yes,” says the doctor. “We don’t want you getting sick.”
Though he mostly spoke by quoting books, his original speech, rare as it was, was breathtaking in its expressive imagery. Before too many months had passed from the time of our breakthrough with Corduroy, he had memorized the Velveteen Rabbit, a rather long and complex children’s book.
< My Thoughts > “…he mostly spoke by quoting books…”
Our Sonny is non-verbal, but he lets you know in no uncertain terms that ‘Toy Story’ must be on all day, in order for him to function. We even have a portable player hooked to the front seat headrest, so he can watch Toy Story in the backseat of the car. They are Sonny’s family. He becomes ‘animated’ with them, looks at them for hours, even coos to them and pats the TV screen. We do expand his viewing to other experiences, in case you’re wondering. Smiles.
He has dolls for each and every character…even Barbie and Ken who are in Toy Story 3. Whatever works to engage him…that’s my motto! And, who am I to deny him that comfort, that enjoyment? Besides, it comes in handy to be able to connect with him by saying… “Stop, I have a laser and I will use it!” Or, “Close that drawer…Stay outta my stuff!”
12% Overlooking his eccentricities, we began to feel confident that he was actually gifted. A tiny seedling of hope unfurled within me.
Ned could not let it go. “Have you noticed that Nat can’t answer a yes-or-no question?” he asked me one day. Ned underscored the point by asking Nat if he wanted a sandwich. Nat said nothing. Then I tried, saying, “Nat, want juice?” instead of an answer, he echoed back, “Want juice?” This, it seemed, was his way of answering “yes”. Ned was right; Nat’s language was sporadic, odd, and rote.
At Nat’s eighteen-month checkup and then again at two years, I brought this up with our new pediatrician. “Oh, he’s a little genius,” she said adoringly, as Nat stood in her large, poster-filled examining room and prattled away for her, occasionally flashing his dazzling smile.
And so I let my misgivings go again for a little while, as did Ned. Which parents would not want to think their child was a genius? I wasn’t fully convinced my worries were justified until I gave birth to Max.
Max allowed me to enjoy motherhood for the first time because now I was parenting a normal child. It was like floating, like falling asleep, like breathing for the first time in a long while. Unlike Nat, Max connected with me from the start, which made me feel confident that I was actually doing things right.
Max would look at me and look at me. We could not get enough of looking at each other. Ned couldn’t help but feel the contrast between his two sons, and more and more, he began to let himself see that things were not going well with Nat.
For my part, as my bond with Max strengthened daily, I could feel Nat slipping away. The voices in my head were getting louder. Something is wrong with Nat, they said.
13% To me, it was like a bad dream. Our sunny, silent, compliant little boy was changing into a stormy, loud, difficult child. “I don’t know what to do,” I said. “I’ve tried everything. You know I have.” He doesn’t like other kids! Is that so terrible?” was Ned’s reply.
My friend Merle said, “I think you need to take him to your pediatrician and talk to her about this.” “I’ve tried to talk to her!” I said to Merle. “She doesn’t think there’s anything wrong!” Merle shrugged.
14% We made a list of all the things Nat couldn’t do and brought it to our pediatrician. After reading it, she nodded quietly and gave us the name of a developmental pediatrician. Oh my God, I thought, my breath stopping in my throat. She’s not talking me out of it. She finally sees the same thing I see.
< My Thoughts > There is a formal checklist on the Centers for Disease Control & Prevention, www.cdc.gov/ActEarly. You can also find ‘Red Flags’ and an informal checklist on My Blog for December 2017.
14% We booked two hour-long appointments for an evaluation with Dr. E., a development specialist at a renowned children’s hospital in our area. He would see us in January, just after New Year’s. Having made the appointment, we didn’t discuss it. We just waited.
At the end of the appointment, Dr. E. told us he suspected something called PDD, pervasive developmental disorder, which, he told us, falls under the umbrella of autism. (Today, the terms PDD & ASD are often used interchangeably.)
The diagnosis gave me a heavy, cold feeling; I instantly knew it was accurate. I sat there without much to say at first, while it began to sink into my consciousness. But this was only the beginning of a very long process of understanding, of letting autism settle itself into our midst.
15% As for Ned, he told me later that he had felt mostly relief when he heard the diagnosis: relief that he finally knew what we were dealing with, so that now we could begin to work on it. Ned didn’t let on that his heart was breaking.
“So does this mean he’s autistic?” I asked Ned. “Is that what he really said?” “Yep, that’s what he said,” Ned sighed.
16% Our families, my close friends, and certain of his teachers all became part of what we called Nat’s cult, people who believe that he is capable of much because that’s what they want to believe. Nat’s cult has been our lifeline.
< My Thoughts > In this part of her book, Susan has a very valuable part called “Suggestions for Getting Through the Early Days, After Diagnosis.” Please find and read this and much, much more.
19% Doing research occupied me fully and gave me a sense of purpose. As for Ned, the information I had dug up gave him some peace, at last. I began to feel more peace of mind, too, as I understood better what we were dealing with and what I would have to do to help Nat.
My next step was to locate other people like me. I called the local branch of the Department of Mental Retardation, which ran an autism support group at a nearby office. My first night at the autism support group felt to me like coming home.
I should have trusted my gut. Because of the delay in diagnosing Nat, he had missed out on at least a year of potentially helpful therapies. I found strength and relief being with people who had been wounded like me, who had lost the dream of perfect children, who understood how harsh this world can be. I told Ned about the meeting, but going to support groups was not his thing.
< My Thoughts > “Support groups…”
Some parents who joined online support groups for parents of children with disabilities stated that overall it was helpful. That sometimes you have to ‘shop around’ to find what fits your needs, because many groups take a one-size-fits-all approach.
Studies show that parents seek out support groups for vary different reasons. There are those who are looking for ways to cope with the news. Others, who are seeking information, resources, and strategies to help them make connections, take action and move on.
Some parents want to find a support group in their area, or a group that they can identify with… such as parents with an older child or adult who has just been diagnosed. Some parents are looking for ways to deal with their anxiety, depression, or seeking an overall sense of well-being. Or, parents who are trying to find other ‘single’ parents, or parents who are on the spectrum themselves. Or parents who have several children on the spectrum, or a large family with only one child on the spectrum.
26% I was beginning to understand that our dealings with the school system as a business relationship where both sides want something: The school district wants to provide an education program that follows the law – in other words, one that is as typical an educational experience as the disability will allow – and that addresses the child’s needs, yet is also the most cost-effective.
Parents need to understand this and still find a way to get what their child needs. The parents want their child to improve to the greatest degree possible, and they want the child eventually to be able to live as normal and productive a life as possible. The two sides are not necessarily at odds, but there are tensions inherent in these positions.
As we learned more about autism and our doubts about Nat’s placement grew, we decided to take him to some new specialists, people who worked outside the school system, to get more information on exactly what Nat needed.
Because she saw so much potential in Nat (a renowned psychologist) said, “I would rather say that he has an expressive language disorder with autism-like tendencies.” Of course, this still amounted to autism… with shades of the same basic diagnosis: pervasive developmental delay, autism spectrum, atypical development.
She also offered the additional benefit of connections: She knew everyone in the various private autism programs in our area, and she had an idea which programs would be good for Nat and which would not.
She also referred us to a neurologist, Dr. B., a celebrity in autism circles. He was one of the pioneers who had proven that autism was neurologically, rather than psychologically based. He did a full workup of Nat. She was the first to use the term “autism spectrum disorder” to describe his condition. She spoke about Nat optimistically, saying that with more of the right approach, kids like Nat can certainly improve. By the time we left her office, we knew that Nat needed a one-to-one student-teacher ratio; a very small class; some typically developing role models; and intensive, around-the-clock behavioral therapy. All in all, we felt strengthened by her assessment.
27% Through the years we have been struck over and over again by the depressing, drab look of Nat’s potential placements. Very few of them actually look like schools, full of creative learning opportunities and happy days. Max’s schools have always been bright, messy, thronging places filled with children’s projects, things hanging from the ceilings, off walls, poking out of the desks.
Nat’s schools, by contrast, look as if their equipment came from the reject pile, with a few battered toys, a few books, and outdated computer. The injustice that our kid’s not only autistic, but his school is also depressing.
28% Nat went to the new school the fall that he turned five, about six months after we visited. When Nat began the new program, we found out, to our great pleasure, that Dr. E. had been right: Nat showed dramatic improvement within weeks. He quickly developed classroom skills such as attending (listening), participating with the group, and answering questions. He learned to take turns and actually played with Max for the first time (a game of Candyland). He began to be able to tolerate transitions. He even wore a costume and sang in a school play at the end of the year.
< My Thoughts > Gaining popularity and success are special school programs teaching ‘social play’.
Radley, et al. (2017) evaluated the effects of the 5-week ‘Superheroes Social Skills’ program which target social skills training and generalization for children with autism. These lessons targeted nonverbal skills, participation, requesting and conversation in a structured social setting. Participants practiced approaching and conversing with a partner appropriately, learning turn-taking without interruption, and making an appropriate comment and/or greeting. Parents reported improvements in their child’s social functioning as a result of attending this program.
Cotugno (2009) studied a 30-week social competence and social skills training and intervention program for ASD children ages 7-11. Participants were children characterized by their failure to develop age-appropriate peer relationships, or a lack of interest social reciprocity. These children were most often preoccupied with narrow, rigid inflexible interests which led to significant problems in engaging in normal and typical peer interactions. As a result of the program, parents said that their child was able to acclimate to a social situation and manage their anxiety effectively. They were able to enter into structured social activities and get ‘unstuck’ without someone’s help, thus also joining in to ‘unrehearsed’ social situations in a spontaneous manner.
28% Nothing lasts forever, though, as I have discovered. Programs have their life cycles. Children’s needs change, and staff members come and go.
< My Thoughts > At this point in the book, Susan addresses school programs in her chapter – What We’ve Learned About School Placements. A ‘must’ read.
36% Nat’s behavior was stressful. We didn’t know why he had to act out, why he had to use his little bit of connection with the world to annoy other people. Nat seemed immune to reasoning. Some of the confidence that we’d enjoyed went away.
37% During a walk with my parents, I complained about the shortcomings of Nat’s placement in the school and behavioral program. They sympathized with my fear that Nat was going to regress, and they agreed that I knew him best and was probably qualified to teach him.
During that walk the homeschool scheme was transformed in my mind into a more realizable plan: an afterschool homeschool.
I would develop the curriculum, educational goals, and activities suited to home life and leisure time, but rather than trying to do the teaching myself, I would hire a tutor.
Our first foray into a tailor made, home after-school program for Nat worked very well. Liz (the neighbor’s nanny) was young, enthusiastic, and bursting with love for Nat and Max. Her presence added something to our home life that I had forgotten about: relaxation.
40% When he was seven, Nat began waking up in the middle of the night, laughing hysterically. Sleep disturbances are not all that unusual for children with autism.
I got a referral to a child psychiatrist from one of our doctors. He prescribed Clonidine without hesitation. The first night we gave Nat the Clonidine, he slept through the night. This was our first encounter with a miracle drug. We slept, and we felt like newly released prisoners. To this day, Nat still takes Clonidine.
< My Thoughts > on medication… Finding the therapeutic dose (like the Goldilock’s porridge ‘that’s just right’), working well with his other meds, yet keeping him from being drugged out and staggering around.
Please read Susan’s book chapter on “Deciding Whether to Use Medication”, it’s such a worthwhile read.
If I haven’t said this somewhere before, the whole medication ‘thing’ is huge to a family just starting to try and get help. Without a diagnosis you can’t get the necessary medication for your child. Start with a referral from your pediatrician, which most insurance companies require. If your pediatrician is not comfortable with taking those steps, ask if they will refer your child to a neurologist who specializes in Autism Spectrum Disorders, or Developmental Delays, or Attention Deficit Hyperactivity Disorder. Check out private companies in your area which can do a professional diagnosis.
There are many places you can begin the search to look into funding your child’s evaluation and assessment. If one or both of the parents has been in the military, there may be funds there. Other sources are of course insurance companies with that provision in extended coverage.
Or, even look into nearby states where they may have more resources and maybe shorter waiting lists. Call state’s Attorney General’s offices for help. But first, check with programs in your area and see if they can give you a contact person or organization that can help you. Ask any children’s charities and foundations in your area and beyond. Empty all pockets…funding alone can be a fulltime job. Get friends and family to help make contacts to their affiliations…this is not for the faint of heart!
Drugs come with a price. This is both a figurative and literal statement. First of all…all drugs have side effects…not all side effects are good. Sometimes you need an additional med to deal with the damaging side effects of your child’s main meds. Our son’s insurance company pays $8,500 per MONTH for his medication. The most expensive of which is his seizure medication, but without it he has very little quality of life.
And, many children and adults with autism spectrum disorder (ASD) have co-morbid conditions; meaning that there are often other underlying disorders which need to be medically treated. The short list would be – epilepsy, obsessive-compulsive disorder (OCD), Tourette syndrome, Attention-deficit hyperactivity disorder(ADHD), anxiety and sleep disorders. There are very effective drugs for all of these. Keeping in mind that they have to work together which is why it is critical that your child’s doctors work as a team and that they are clear on who is prescribing what and how the meds with enhance one another.
This is very important. Your pharmacist also has the whole drug picture so you want to make certain that one pharmacy is handling all of your child’s medication. Some states/insurance companies/doctors require that your child’s drugs have someone to oversee all of them. A ‘medication manager’, or ‘pharmacological psychiatrist’ (aka licensed in Psychiatric Pharmacology/Psychopharmacology, who is able to prescribe ‘controlled substances’ for children and adults). Just to be on the safe side.
Susan’s chapter on Managing the Specialists helps you stay organized, trust your instincts, keep current, and be assertive.
43% We saw that Nat’s behaviors were the result of a combination of elements: his personality, growth factors (such as hormonal changes), and his autism. There is no way we could “fix” it all – no way to make him completely acceptable to the world. But, we decided, that what we can improve, we will, and medication offered opportunities for improvement.
91% What autism has taught us is that we can do many things to prepare Nat for adult life, to help him participate in the world, and yet it’s painfully clear that the world still is not ready for him. Nat’s brothers continue to buzz around him, interacting with him differently with each new phase of theirs. I still try to find a common denominator for all three.
Last summer, discovering that they liked water fights, I excitedly bought three huge Super Soakers at the drugstore because I knew that for around thirty dollars I was going to get at least a good hour of all three brothers playing together.
92% But while Max and Ben sprayed each other playfully, Nat seemed startled every time they got him. He didn’t even think to squirt them back. He just kept squirting his water onto the grass, mesmerized by the stream. They he’d get hit in the face by Ben or Max, and he would look up, puzzled, and wipe his eyes, returning his glance to the stream of water from his own gun.
Finally I said, “If you don’t like it, Nat, squirt Max!” “Yeah, Nat, squirt us!” After more coaching from his brothers, Nat figured out how the game was played. But we could tell he still preferred to watch the water stream out of the gun onto the grass. It’s OK, I thought, as long as he’s out here, doing basically the same thing as the other boys.
3% Nat’s room is a capsule of who he is: stuck at different ages, flashes of toddlerhood mixed with various attempts to broaden him.
Little Ben is just beginning to realize that his oldest brother rarely answers him, may laugh at him when he cries, and breaks apart his Lego structures but has no interest in building anything. Recently he asked me if Nat’s brain is “broken.” He is learning the hard way that his biggest brother is someone to avoid, a dead end, even; also that sometimes life can be painful and make no sense.
94% There is no cure for Nat’s autism, no one good approach, and no way out. There is only the five of us. We help Nat become the best he can be, and in the process he makes us who we are. Because of this strange and terrible gift, we cannot be typical, we cannot be normal, whatever that is. But this is certain: We are OK. And we stand together, sometimes against the autism, sometimes against the world. But always together, as a family.
=====================
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.
Cotugno, A. (2009). Social Competence & Social Skills Training & Intervention for Children with Autism Spectrum Disorder; Journal of Autism & Developmental Disorders; 39; 1268-1277.
Radley, K. et al. (2017). Effects of a Social Skills Intervention on Children with Autism Spectrum Disorder & Peers with Shared Deficits; Education & Treatment of Children Journal; 40; 233-262.
Excerpts from the book – (3% indicates location in the Kindle version of the book, instead of page numbers).
< My Thoughts > Susan Senator is the mother of three boys, the oldest of whom has autism. She is also the author of the Autism Mom’s Survival Guide (for Dad’s too!): Creating a Balanced & Happy Life While Raising a Child with Autism (2011) and Autism Adulthood: Strategies & Insights for a Fulfilling Life (2016); among others.
3% Making Peace with Autism is the story of a family – a husband, wife and three sons – and our struggle to incorporate our oldest son’s autism into our lives. With this book I hope to convey that despite the tremendous challenges that autism brings, you can find happiness as a family – even if you don’t find a miracle cure. Here’s how we’ve done it.
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.
6% I talked and read to the baby in utero. I read all kinds of mother-to-be books. We were so well prepared that we didn’t think anything could go wrong. This illusion was deepened by our comfortable backgrounds and the fact that we lived in a society that promoted the idea of family life as a Hallmark card. I dreamed about my baby, yearned for his arrival, but in a straight-out-of-Hollywood way.
7% Nat was a beautiful baby, with tufts of white blond hair and violet eyes. A docile infant, he was so enchanting that people often stopped me to admire him. My first moments with him were ecstasy. He was all potential. Autism was not yet even a cloud on the horizon. But almost immediately, there was the rumble of distant thunder.
At the beginning, the signs were always fleeting, with a now-you-see-them, now-you-don’t quality. Everything I noticed or felt was subtle, flickering, momentary.
All my questions were so easily answered, my fears so quickly dismissed by doctors, family, Ned, and even me.
When did I first know something was amiss with Nat? Almost immediately. Something inside me told me that mothering a newborn was not supposed to feel so flat.
At first the autism came in little bursts, bad moments here and there, sprinklings of disappointment in what he did or didn’t do.
He didn’t actually look at me for any length of time until his fifth day of life, when suddenly his eyes were opened almost absurdly wide. My sister Laura visited us that day. A medical student, and an aunt for the first time, she was thrilled with this chance to bond with a baby, especially mine. Nat was fully alert and experiencing this world and it was a noisy, chaotic place for him. Laura and I noted his wide-eyed stare, thinking it was cute.
During Nat’s first week, I did express a few misgivings about the way he world throw up his hands at the slightest jostling or sound. “Why does he do that?” I asked my sister. It was easier asking her, a med student, than calling the pediatrician, whom I felt I was already calling too much.
That’s his startle reflex,” Laura explained. “Infants have that to protect themselves, to let them know something’s around.” But why did he do it so often? The least little thing would set him off. Arms shooting up, eyes wide. His body would explode in reaction to every sudden move or loud noise. It didn’t seem right to me, no matter what I was told about it.
< My Thoughts > “Arms shooting up, eyes wide, that’s his startle reflex…” Stuck in sensory mode of appearing startled when approached suddenly.
According to Bogdashina (2016), “Many autistic individuals (who use one sense at a time), involvement of other senses can bring sensory overload.” She says, “Autism is a pervasive developmental disorder because it covers so many different areas of cognition. Yet for autistic individuals with sensory problems, the term ‘pervasive’ acquires a different meaning. It is pervasive because sensory problems are with them every minute of every day.” Certain behaviors, which sometimes become ritualistic, serve to help them when perceiving themselves in relation to their environment. A way of reacting that makes them feel safe.
8% Ned’s awakening about Nat was gradual, while my alarm was almost constant, flashing on and off steadily. The first time I left Nat for a few hours with Ned, I felt certain the baby would die with me gone. I called Ned within the first hour of my outing.
When Ned answered the phone, he didn’t sound surprised to hear my voice. “Yeah, he’s fine,” he said. “Really?” I replied in disbelief. “Yeah, Sue, why wouldn’t he be?” He sounded amused but also slightly annoyed about my hysterics.
Even though he’s a computer geek, a mathematician, a numbers guy, he plays around like a dumb jock. When Nat and Ned played, things felt better to me, as if maybe there was nothing wrong, after all. Then, when Nat was five months old, a woman named Merle brought her baby, Quinn over to visit. Quinn was very interested in the world around him – almost ridiculously so. He squirmed and flailed his fat legs. He also made conversational noises. Seeing Quinn added to my concern about Nat and his lack of interest in the world.
9% Even though Nat hit the major developmental milestones on time, such as rolling over, crawling, standing walking, and even speaking his first words, his lack of interest in people and toys would gnaw at me.
It made me want to stuff so much into every interaction, so as to get it all in before he looked away.
As for toys, he would set up his Fisher-Price dolls in a perfect line, but then he would simply stare at them. and suck his thumb. There they stayed on his rug, like little soldiers forever waiting for the call. I would show him how to do things time and time again, but it never took.
< My Thoughts > “I would show him how to do things time and time again, but it never took.”
Perhaps it was too soon, but Susan’s wonderful intuition was at work here. She tried to engage him where he wanted to be; on the floor.
‘Floortime Play-therapy…’ Retrieved from – https://www.stanleygreenspan.com/
‘Floortime’ is a comprehensive program for infants, young children and families facing a variety of developmental and learning challenges. The program is called ‘Floortime’ because you follow the child’s lead, getting down on the floor when they do.
The whole family can learn to join in the child’s world (a little island on the floor), thus leading them to join into the shared world the family lives in. This will help them master their functional and developmental capacities through ‘shared attention’ and by beginning in ‘engagement’.
9% Nat could suck his thumb and stare straight at the ceiling, and block everything going on around him and feel calm again. By then he had apparently learned the defense of blocking out stimuli that were too much for him. But to me, it was the most bizarre behavior.
I felt terrible about Nat’s apparent indifference, so ashamed. Why doesn’t he like anything? I wondered aloud later to Ned. Ned shrugged and repeated his mantra. “He’s different. It’s OK. You’re not doing anything wrong.”
10% “Nat should be able to do more.” Silence. And then “Well, he can’t he’s his own person, that’s all. Don’t compare him to Quinn.”
“I can’t help it. It doesn’t seem right. He can’t play.” “He can play! He just did!” The tension between us grew.
11% Finally Nat began showing us how much he loved books, their predictability and comforting rhythm. Corduroy’s Day was a real turning point. It was momentous for us to realize that Nat could understand stories and be affected by them somehow. Something in his environment, something complex and with the potential to expand his world, was giving him pleasure.
By the time Nat was two, he loved books so much he had begun to memorize them. Our first conversations with him were mostly crafted out of lines from books: If I gave him strawberries, I’d say “Look, Nat, ‘one-two-three-four strawberries,’” from a waterproof bathtub counting book. We began to play fill-in-the-blank with Nat, starting a sentence from a beloved book and waiting for him to finish it.
When we played this way with him, he would reward us with happy book chatter and a wide smile. We found that we could use content from books to explain new concepts to him, too, a process that delighted and comforted him.
For instance we used lines from the book Corduroy Goes to the Doctor to explain that he would have to get undressed, get weighed, and get a shot. “Do I get a shot?” asks Corduroy. “Yes,” says the doctor. “We don’t want you getting sick.”
Though he mostly spoke by quoting books, his original speech, rare as it was, was breathtaking in its expressive imagery. Before too many months had passed from the time of our breakthrough with Corduroy, he had memorized the Velveteen Rabbit, a rather long and complex children’s book.
< My Thoughts > “…he mostly spoke by quoting books…”
Our Sonny is non-verbal, but he lets you know in no uncertain terms that ‘Toy Story’ must be on all day, in order for him to function. We even have a portable player hooked to the front seat headrest, so he can watch Toy Story in the backseat of the car. They are Sonny’s family. He becomes ‘animated’ with them, looks at them for hours, even coos to them and pats the TV screen. We do expand his viewing to other experiences, in case you’re wondering. Smiles.
He has dolls for each and every character…even Barbie and Ken who are in Toy Story 3. Whatever works to engage him…that’s my motto! And, who am I to deny him that comfort, that enjoyment? Besides, it comes in handy to be able to connect with him by saying… “Stop, I have a laser and I will use it!” Or, “Close that drawer…Stay outta my stuff!”
12% Overlooking his eccentricities, we began to feel confident that he was actually gifted. A tiny seedling of hope unfurled within me.
Ned could not let it go. “Have you noticed that Nat can’t answer a yes-or-no question?” he asked me one day. Ned underscored the point by asking Nat if he wanted a sandwich. Nat said nothing. Then I tried, saying, “Nat, want juice?” instead of an answer, he echoed back, “Want juice?” This, it seemed, was his way of answering “yes”. Ned was right; Nat’s language was sporadic, odd, and rote.
At Nat’s eighteen-month checkup and then again at two years, I brought this up with our new pediatrician. “Oh, he’s a little genius,” she said adoringly, as Nat stood in her large, poster-filled examining room and prattled away for her, occasionally flashing his dazzling smile.
And so I let my misgivings go again for a little while, as did Ned. Which parents would not want to think their child was a genius? I wasn’t fully convinced my worries were justified until I gave birth to Max.
Max allowed me to enjoy motherhood for the first time because now I was parenting a normal child. It was like floating, like falling asleep, like breathing for the first time in a long while. Unlike Nat, Max connected with me from the start, which made me feel confident that I was actually doing things right.
Max would look at me and look at me. We could not get enough of looking at each other. Ned couldn’t help but feel the contrast between his two sons, and more and more, he began to let himself see that things were not going well with Nat.
For my part, as my bond with Max strengthened daily, I could feel Nat slipping away. The voices in my head were getting louder. Something is wrong with Nat, they said.
13% To me, it was like a bad dream. Our sunny, silent, compliant little boy was changing into a stormy, loud, difficult child. “I don’t know what to do,” I said. “I’ve tried everything. You know I have.” He doesn’t like other kids! Is that so terrible?” was Ned’s reply.
My friend Merle said, “I think you need to take him to your pediatrician and talk to her about this.” “I’ve tried to talk to her!” I said to Merle. “She doesn’t think there’s anything wrong!” Merle shrugged.
14% We made a list of all the things Nat couldn’t do and brought it to our pediatrician. After reading it, she nodded quietly and gave us the name of a developmental pediatrician. Oh my God, I thought, my breath stopping in my throat. She’s not talking me out of it. She finally sees the same thing I see.
< My Thoughts > There is a formal checklist on the Centers for Disease Control & Prevention, www.cdc.gov/ActEarly. You can also find ‘Red Flags’ and an informal checklist on My Blog for December 2017.
14% We booked two hour-long appointments for an evaluation with Dr. E., a development specialist at a renowned children’s hospital in our area. He would see us in January, just after New Year’s. Having made the appointment, we didn’t discuss it. We just waited.
At the end of the appointment, Dr. E. told us he suspected something called PDD, pervasive developmental disorder, which, he told us, falls under the umbrella of autism. (Today, the terms PDD & ASD are often used interchangeably.)
The diagnosis gave me a heavy, cold feeling; I instantly knew it was accurate. I sat there without much to say at first, while it began to sink into my consciousness. But this was only the beginning of a very long process of understanding, of letting autism settle itself into our midst.
15% As for Ned, he told me later that he had felt mostly relief when he heard the diagnosis: relief that he finally knew what we were dealing with, so that now we could begin to work on it. Ned didn’t let on that his heart was breaking.
“So does this mean he’s autistic?” I asked Ned. “Is that what he really said?” “Yep, that’s what he said,” Ned sighed.
16% Our families, my close friends, and certain of his teachers all became part of what we called Nat’s cult, people who believe that he is capable of much because that’s what they want to believe. Nat’s cult has been our lifeline.
< My Thoughts > In this part of her book, Susan has a very valuable part called “Suggestions for Getting Through the Early Days, After Diagnosis.” Please find and read this and much, much more.
19% Doing research occupied me fully and gave me a sense of purpose. As for Ned, the information I had dug up gave him some peace, at last. I began to feel more peace of mind, too, as I understood better what we were dealing with and what I would have to do to help Nat.
My next step was to locate other people like me. I called the local branch of the Department of Mental Retardation, which ran an autism support group at a nearby office. My first night at the autism support group felt to me like coming home.
I should have trusted my gut. Because of the delay in diagnosing Nat, he had missed out on at least a year of potentially helpful therapies. I found strength and relief being with people who had been wounded like me, who had lost the dream of perfect children, who understood how harsh this world can be. I told Ned about the meeting, but going to support groups was not his thing.
< My Thoughts > “Support groups…”
Some parents who joined online support groups for parents of children with disabilities stated that overall it was helpful. That sometimes you have to ‘shop around’ to find what fits your needs, because many groups take a one-size-fits-all approach.
Studies show that parents seek out support groups for vary different reasons. There are those who are looking for ways to cope with the news. Others, who are seeking information, resources, and strategies to help them make connections, take action and move on.
Some parents want to find a support group in their area, or a group that they can identify with… such as parents with an older child or adult who has just been diagnosed. Some parents are looking for ways to deal with their anxiety, depression, or seeking an overall sense of well-being. Or, parents who are trying to find other ‘single’ parents, or parents who are on the spectrum themselves. Or parents who have several children on the spectrum, or a large family with only one child on the spectrum.
26% I was beginning to understand that our dealings with the school system as a business relationship where both sides want something: The school district wants to provide an education program that follows the law – in other words, one that is as typical an educational experience as the disability will allow – and that addresses the child’s needs, yet is also the most cost-effective.
Parents need to understand this and still find a way to get what their child needs. The parents want their child to improve to the greatest degree possible, and they want the child eventually to be able to live as normal and productive a life as possible. The two sides are not necessarily at odds, but there are tensions inherent in these positions.
As we learned more about autism and our doubts about Nat’s placement grew, we decided to take him to some new specialists, people who worked outside the school system, to get more information on exactly what Nat needed.
Because she saw so much potential in Nat (a renowned psychologist) said, “I would rather say that he has an expressive language disorder with autism-like tendencies.” Of course, this still amounted to autism… with shades of the same basic diagnosis: pervasive developmental delay, autism spectrum, atypical development.
She also offered the additional benefit of connections: She knew everyone in the various private autism programs in our area, and she had an idea which programs would be good for Nat and which would not.
She also referred us to a neurologist, Dr. B., a celebrity in autism circles. He was one of the pioneers who had proven that autism was neurologically, rather than psychologically based. He did a full workup of Nat. She was the first to use the term “autism spectrum disorder” to describe his condition. She spoke about Nat optimistically, saying that with more of the right approach, kids like Nat can certainly improve. By the time we left her office, we knew that Nat needed a one-to-one student-teacher ratio; a very small class; some typically developing role models; and intensive, around-the-clock behavioral therapy. All in all, we felt strengthened by her assessment.
27% Through the years we have been struck over and over again by the depressing, drab look of Nat’s potential placements. Very few of them actually look like schools, full of creative learning opportunities and happy days. Max’s schools have always been bright, messy, thronging places filled with children’s projects, things hanging from the ceilings, off walls, poking out of the desks.
Nat’s schools, by contrast, look as if their equipment came from the reject pile, with a few battered toys, a few books, and outdated computer. The injustice that our kid’s not only autistic, but his school is also depressing.
28% Nat went to the new school the fall that he turned five, about six months after we visited. When Nat began the new program, we found out, to our great pleasure, that Dr. E. had been right: Nat showed dramatic improvement within weeks. He quickly developed classroom skills such as attending (listening), participating with the group, and answering questions. He learned to take turns and actually played with Max for the first time (a game of Candyland). He began to be able to tolerate transitions. He even wore a costume and sang in a school play at the end of the year.
< My Thoughts > Gaining popularity and success are special school programs teaching ‘social play’.
Radley, et al. (2017) evaluated the effects of the 5-week ‘Superheroes Social Skills’ program which target social skills training and generalization for children with autism. These lessons targeted nonverbal skills, participation, requesting and conversation in a structured social setting. Participants practiced approaching and conversing with a partner appropriately, learning turn-taking without interruption, and making an appropriate comment and/or greeting. Parents reported improvements in their child’s social functioning as a result of attending this program.
Cotugno (2009) studied a 30-week social competence and social skills training and intervention program for ASD children ages 7-11. Participants were children characterized by their failure to develop age-appropriate peer relationships, or a lack of interest social reciprocity. These children were most often preoccupied with narrow, rigid inflexible interests which led to significant problems in engaging in normal and typical peer interactions. As a result of the program, parents said that their child was able to acclimate to a social situation and manage their anxiety effectively. They were able to enter into structured social activities and get ‘unstuck’ without someone’s help, thus also joining in to ‘unrehearsed’ social situations in a spontaneous manner.
28% Nothing lasts forever, though, as I have discovered. Programs have their life cycles. Children’s needs change, and staff members come and go.
< My Thoughts > At this point in the book, Susan addresses school programs in her chapter – What We’ve Learned About School Placements. A ‘must’ read.
36% Nat’s behavior was stressful. We didn’t know why he had to act out, why he had to use his little bit of connection with the world to annoy other people. Nat seemed immune to reasoning. Some of the confidence that we’d enjoyed went away.
37% During a walk with my parents, I complained about the shortcomings of Nat’s placement in the school and behavioral program. They sympathized with my fear that Nat was going to regress, and they agreed that I knew him best and was probably qualified to teach him.
During that walk the homeschool scheme was transformed in my mind into a more realizable plan: an afterschool homeschool.
I would develop the curriculum, educational goals, and activities suited to home life and leisure time, but rather than trying to do the teaching myself, I would hire a tutor.
Our first foray into a tailor made, home after-school program for Nat worked very well. Liz (the neighbor’s nanny) was young, enthusiastic, and bursting with love for Nat and Max. Her presence added something to our home life that I had forgotten about: relaxation.
40% When he was seven, Nat began waking up in the middle of the night, laughing hysterically. Sleep disturbances are not all that unusual for children with autism.
I got a referral to a child psychiatrist from one of our doctors. He prescribed Clonidine without hesitation. The first night we gave Nat the Clonidine, he slept through the night. This was our first encounter with a miracle drug. We slept, and we felt like newly released prisoners. To this day, Nat still takes Clonidine.
< My Thoughts > on medication… Finding the therapeutic dose (like the Goldilock’s porridge ‘that’s just right’), working well with his other meds, yet keeping him from being drugged out and staggering around.
Please read Susan’s book chapter on “Deciding Whether to Use Medication”, it’s such a worthwhile read.
If I haven’t said this somewhere before, the whole medication ‘thing’ is huge to a family just starting to try and get help. Without a diagnosis you can’t get the necessary medication for your child. Start with a referral from your pediatrician, which most insurance companies require. If your pediatrician is not comfortable with taking those steps, ask if they will refer your child to a neurologist who specializes in Autism Spectrum Disorders, or Developmental Delays, or Attention Deficit Hyperactivity Disorder. Check out private companies in your area which can do a professional diagnosis.
There are many places you can begin the search to look into funding your child’s evaluation and assessment. If one or both of the parents has been in the military, there may be funds there. Other sources are of course insurance companies with that provision in extended coverage.
Or, even look into nearby states where they may have more resources and maybe shorter waiting lists. Call state’s Attorney General’s offices for help. But first, check with programs in your area and see if they can give you a contact person or organization that can help you. Ask any children’s charities and foundations in your area and beyond. Empty all pockets…funding alone can be a fulltime job. Get friends and family to help make contacts to their affiliations…this is not for the faint of heart!
Drugs come with a price. This is both a figurative and literal statement. First of all…all drugs have side effects…not all side effects are good. Sometimes you need an additional med to deal with the damaging side effects of your child’s main meds. Our son’s insurance company pays $8,500 per MONTH for his medication. The most expensive of which is his seizure medication, but without it he has very little quality of life.
And, many children and adults with autism spectrum disorder (ASD) have co-morbid conditions; meaning that there are often other underlying disorders which need to be medically treated. The short list would be – epilepsy, obsessive-compulsive disorder (OCD), Tourette syndrome, Attention-deficit hyperactivity disorder(ADHD), anxiety and sleep disorders. There are very effective drugs for all of these. Keeping in mind that they have to work together which is why it is critical that your child’s doctors work as a team and that they are clear on who is prescribing what and how the meds with enhance one another.
This is very important. Your pharmacist also has the whole drug picture so you want to make certain that one pharmacy is handling all of your child’s medication. Some states/insurance companies/doctors require that your child’s drugs have someone to oversee all of them. A ‘medication manager’, or ‘pharmacological psychiatrist’ (aka licensed in Psychiatric Pharmacology/Psychopharmacology, who is able to prescribe ‘controlled substances’ for children and adults). Just to be on the safe side.
Susan’s chapter on Managing the Specialists helps you stay organized, trust your instincts, keep current, and be assertive.
43% We saw that Nat’s behaviors were the result of a combination of elements: his personality, growth factors (such as hormonal changes), and his autism. There is no way we could “fix” it all – no way to make him completely acceptable to the world. But, we decided, that what we can improve, we will, and medication offered opportunities for improvement.
91% What autism has taught us is that we can do many things to prepare Nat for adult life, to help him participate in the world, and yet it’s painfully clear that the world still is not ready for him. Nat’s brothers continue to buzz around him, interacting with him differently with each new phase of theirs. I still try to find a common denominator for all three.
Last summer, discovering that they liked water fights, I excitedly bought three huge Super Soakers at the drugstore because I knew that for around thirty dollars I was going to get at least a good hour of all three brothers playing together.
92% But while Max and Ben sprayed each other playfully, Nat seemed startled every time they got him. He didn’t even think to squirt them back. He just kept squirting his water onto the grass, mesmerized by the stream. They he’d get hit in the face by Ben or Max, and he would look up, puzzled, and wipe his eyes, returning his glance to the stream of water from his own gun.
Finally I said, “If you don’t like it, Nat, squirt Max!” “Yeah, Nat, squirt us!” After more coaching from his brothers, Nat figured out how the game was played. But we could tell he still preferred to watch the water stream out of the gun onto the grass. It’s OK, I thought, as long as he’s out here, doing basically the same thing as the other boys.
3% Nat’s room is a capsule of who he is: stuck at different ages, flashes of toddlerhood mixed with various attempts to broaden him.
Little Ben is just beginning to realize that his oldest brother rarely answers him, may laugh at him when he cries, and breaks apart his Lego structures but has no interest in building anything. Recently he asked me if Nat’s brain is “broken.” He is learning the hard way that his biggest brother is someone to avoid, a dead end, even; also that sometimes life can be painful and make no sense.
94% There is no cure for Nat’s autism, no one good approach, and no way out. There is only the five of us. We help Nat become the best he can be, and in the process he makes us who we are. Because of this strange and terrible gift, we cannot be typical, we cannot be normal, whatever that is. But this is certain: We are OK. And we stand together, sometimes against the autism, sometimes against the world. But always together, as a family.
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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.
Cotugno, A. (2009). Social Competence & Social Skills Training & Intervention for Children with Autism Spectrum Disorder; Journal of Autism & Developmental Disorders; 39; 1268-1277.
Radley, K. et al. (2017). Effects of a Social Skills Intervention on Children with Autism Spectrum Disorder & Peers with Shared Deficits; Education & Treatment of Children Journal; 40; 233-262.
