Seeing Ezra: A Mother’s Story of Autism, Unconditional Love, and the Meaning of Normal, by Kerry Cohen, eBook 2011; an Extended 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 book >
1% He twirls and dances through the world, laughing, humming. I am afraid I don’t have the language to describe him the right way.
Do you see him? How he smiles slyly, how he sees you looking, how he hears everything and sometimes nothing. How he is just a child, like any other child, and also how he is different. How he is so much more, always, than you think he might be.
He needs nothing. He just plays. He looks through books. He plays on the computer. He says a word to his brother Griffin, who wants most to thrill Ezra.
He doesn’t need us, not at all the way we need him. The three of us – Griffin, their father, Michael, and I – we follow Ezra, reaching for him, desperate in our love.
Ezra hugs and kisses us, he smiles, he gazes with affection. He doles out his love in necessary amounts. Who is this child whom I could not live without?
2% His teachers and therapists spend endless amounts of energy trying to make him want more, but I am secretly envious of his self-containment.
But now he wants something. His want is simple. He wants more milk. He’s been talking for two and a half years now, but for reasons known only to him, he refuses to use this word.
“What was that Ezra? You say you want milk?” “Say yes,” I tell him. “Say yes, and I’ll give you milk.”
I know what he wants. He knows I know what he wants. But now I’ve got it in my head that he has to say “yes,” that he has to use the language I want him to use. It is one of the many dances Ezra and I go through. He does the same dance with his dad.
“Y-e-s,” I say. “What’s that spell?” “Whys,” he answers. I frown. “No, Ezra, not ‘Whys’. Y-e-s.” “Whys,” he says again… his face breaking into a smile.
“Whys.” He erupts into laughter. Oh, I wish you could see him, the way his eyes are like prisms of lights. “Ezra,” I say. I’m smiling now, too, impossible not to when he laughs like this.
Ezra, I say. “Tell me what does “Y-e-s” spell?” “Whys!” he can barely get it out he is laughing so hard. “Y-e-s!” “Whys!” “Whys, whys, whys!”
I break into laughter with him, giving in to him and his world. Why does it take me so long, when we are both so much happier here? We say the new word together again and again. “Whys, whys, whys!”
2% The first time I hear the word ‘autism’ associated with Ezra, he is only a year old, and it comes from his young baby sitter. She is a nice girl, a little awkward, who seems to love Ezra from the start. As she’s about to leave I hear, “One thing I want to say,” she starts. I wait. I have no sense of the huge thing she’s about to say, no sense that life will forever be altered.
“I think Ezra’s on the autistic spectrum,” she states. Here’s what happens to me in this moment: An electric bolt shoots through my body. I think, “Please God, no.” She lists a couple reasons. Because that one small exchange effectively ended my innocence as a mother.
I want to claim that time back. I want to go back to that moment when she said that. I would never be the same. My son was stolen from me. How dare anyone take that process of discovery from me.
< My Thoughts > “I would never be the same. My son was stolen from me.”
Retrieved from: https://fullmetalheart.com/index.php/2016/07/06/but-autism-stole-my-child/
Nora from North Dakota exclaims on her blog, A Heart Made Full Metal, that when she hears parents say that autism stole their child she weeps bitter tears for them.
“Autism gave me my freedom. Autism gave me my voice. Being autistic is who I am. It’s helped me understand on a level I wouldn’t otherwise,” Nora continues.
Excerpts from the book – (1% indicates location in the Kindle version of the book, instead of page numbers).
< Excerpts from the book >
1% He twirls and dances through the world, laughing, humming. I am afraid I don’t have the language to describe him the right way.
Do you see him? How he smiles slyly, how he sees you looking, how he hears everything and sometimes nothing. How he is just a child, like any other child, and also how he is different. How he is so much more, always, than you think he might be.
He needs nothing. He just plays. He looks through books. He plays on the computer. He says a word to his brother Griffin, who wants most to thrill Ezra.
He doesn’t need us, not at all the way we need him. The three of us – Griffin, their father, Michael, and I – we follow Ezra, reaching for him, desperate in our love.
Ezra hugs and kisses us, he smiles, he gazes with affection. He doles out his love in necessary amounts. Who is this child whom I could not live without?
2% His teachers and therapists spend endless amounts of energy trying to make him want more, but I am secretly envious of his self-containment.
But now he wants something. His want is simple. He wants more milk. He’s been talking for two and a half years now, but for reasons known only to him, he refuses to use this word.
“What was that Ezra? You say you want milk?” “Say yes,” I tell him. “Say yes, and I’ll give you milk.”
I know what he wants. He knows I know what he wants. But now I’ve got it in my head that he has to say “yes,” that he has to use the language I want him to use. It is one of the many dances Ezra and I go through. He does the same dance with his dad.
“Y-e-s,” I say. “What’s that spell?” “Whys,” he answers. I frown. “No, Ezra, not ‘Whys’. Y-e-s.” “Whys,” he says again… his face breaking into a smile.
“Whys.” He erupts into laughter. Oh, I wish you could see him, the way his eyes are like prisms of lights. “Ezra,” I say. I’m smiling now, too, impossible not to when he laughs like this.
Ezra, I say. “Tell me what does “Y-e-s” spell?” “Whys!” he can barely get it out he is laughing so hard. “Y-e-s!” “Whys!” “Whys, whys, whys!”
I break into laughter with him, giving in to him and his world. Why does it take me so long, when we are both so much happier here? We say the new word together again and again. “Whys, whys, whys!”
2% The first time I hear the word ‘autism’ associated with Ezra, he is only a year old, and it comes from his young baby sitter. She is a nice girl, a little awkward, who seems to love Ezra from the start. As she’s about to leave I hear, “One thing I want to say,” she starts. I wait. I have no sense of the huge thing she’s about to say, no sense that life will forever be altered.
“I think Ezra’s on the autistic spectrum,” she states. Here’s what happens to me in this moment: An electric bolt shoots through my body. I think, “Please God, no.” She lists a couple reasons. Because that one small exchange effectively ended my innocence as a mother.
I want to claim that time back. I want to go back to that moment when she said that. I would never be the same. My son was stolen from me. How dare anyone take that process of discovery from me.
< My Thoughts > “I would never be the same. My son was stolen from me.”
Retrieved from: https://fullmetalheart.com/index.php/2016/07/06/but-autism-stole-my-child/
Nora from North Dakota exclaims on her blog, A Heart Made Full Metal, that when she hears parents say that autism stole their child she weeps bitter tears for them.
“Autism gave me my freedom. Autism gave me my voice. Being autistic is who I am. It’s helped me understand on a level I wouldn’t otherwise,” Nora continues.
“But, I’ll be the first person to admit autism isn’t all skittles and sunshine,” she says. “There are times that suck so much. Such as when I’m clasping my hands over my ears and crying because of the sound of fireworks. Such as having the words literally trapped inside me and being unable to speak. Such as not being able to wear what I want due to sensory issues. And, such as avoiding certain foods. But at the same time, there’s beauty in it.”
“One of my favorite feelings is standing outside and feeling the fresh, warm sunshine against my pale skin and a gentle breeze brushing my hair. This is my happy spot. This is freedom! For me autism is freedom. Autism is life. Autism is who I am, Nora from North Dakota.”
3% He is fine. His autism, even, is fine. Ezra’s autism changed us, yes. This moment held inside it everything that has been harmful to us about his autism. Because the babysitter’s words took me off my own instinctual track as Ezra’s mother.
4% I don’t believe in the small-window-of-time theory any more than I believe that all parents need to be anxious to change how their children interact with the world.
Any more than I believe a child with autism can stop being autistic through therapy, or that autistic people don’t come to their own understandings once they are ready, regardless of therapies, just on a different timeline from others.
Nobody seems to think about the harm that can come to a family, to a child, from pushing them into the world all special needs families must enter, one full of evaluations and interventions and schedules and do something fast now – quick, or else.
The overwhelming pressure to follow proven scientific guidelines about early intervention often steals parents’ courage to follow their instincts and blinds them to their baby as just that, a baby.
This isn’t cancer, after all, with cells that will grow and spread. This is a neurological difference. A difference that will not ever become as not different as those early-intervention pushers seem to want everyone to believe.
In one of the child psychology courses I took to become a psychotherapist, I learned the abstract facts about autism. Autism is essentially, a constellation of symptoms. I learned about autism as a catastrophe. I was a student, taking neat notes during the lecture, Ezra growing in my belly, a little fish, twisting and waving, becoming.
5% Tonight, I learn about autism from a parent’s perspective: the red flags that include not pointing or waving by twelve months, neither of which Ezra does.
He hasn’t adopted any of the sign language I’ve been diligently trying to teach him since he was nine months old.
But there’s so much I read about autism that doesn’t fit Ezra. He had normal eye contact, at least once he is comfortable with someone. He initiates peek-a-boo and chasing games. He plays normally with most toys, albeit sometimes in rigid ways.
He engages us as long as what we are doing interests him. He’s affectionate and doesn’t mind loud noises or sudden changes or if we want to join him in his play or mess with what he’s already doing. He’s one year old, a baby still. It’s so hard to know.
At eighteen months Ezra learns sign language for “more.” I have been trying to teach him for the better part of a year. Pushing my fingertips against each other again and again, saying, “More, Ezra. Look at my hands. More, More.”
I’m handing him one cheese puff at a time, urging him to ask for more. He looks at the bag, leans toward it, says, “Mm mm mm.” finally, he does it. He presses his chubby dimpled hands together. He watches them as he does. “More!” I yell. “You signed ‘more’!” I hand him the puff and he sticks it in his mouth, unfazed.
“One of my favorite feelings is standing outside and feeling the fresh, warm sunshine against my pale skin and a gentle breeze brushing my hair. This is my happy spot. This is freedom! For me autism is freedom. Autism is life. Autism is who I am, Nora from North Dakota.”
3% He is fine. His autism, even, is fine. Ezra’s autism changed us, yes. This moment held inside it everything that has been harmful to us about his autism. Because the babysitter’s words took me off my own instinctual track as Ezra’s mother.
4% I don’t believe in the small-window-of-time theory any more than I believe that all parents need to be anxious to change how their children interact with the world.
Any more than I believe a child with autism can stop being autistic through therapy, or that autistic people don’t come to their own understandings once they are ready, regardless of therapies, just on a different timeline from others.
Nobody seems to think about the harm that can come to a family, to a child, from pushing them into the world all special needs families must enter, one full of evaluations and interventions and schedules and do something fast now – quick, or else.
The overwhelming pressure to follow proven scientific guidelines about early intervention often steals parents’ courage to follow their instincts and blinds them to their baby as just that, a baby.
This isn’t cancer, after all, with cells that will grow and spread. This is a neurological difference. A difference that will not ever become as not different as those early-intervention pushers seem to want everyone to believe.
In one of the child psychology courses I took to become a psychotherapist, I learned the abstract facts about autism. Autism is essentially, a constellation of symptoms. I learned about autism as a catastrophe. I was a student, taking neat notes during the lecture, Ezra growing in my belly, a little fish, twisting and waving, becoming.
5% Tonight, I learn about autism from a parent’s perspective: the red flags that include not pointing or waving by twelve months, neither of which Ezra does.
He hasn’t adopted any of the sign language I’ve been diligently trying to teach him since he was nine months old.
But there’s so much I read about autism that doesn’t fit Ezra. He had normal eye contact, at least once he is comfortable with someone. He initiates peek-a-boo and chasing games. He plays normally with most toys, albeit sometimes in rigid ways.
He engages us as long as what we are doing interests him. He’s affectionate and doesn’t mind loud noises or sudden changes or if we want to join him in his play or mess with what he’s already doing. He’s one year old, a baby still. It’s so hard to know.
At eighteen months Ezra learns sign language for “more.” I have been trying to teach him for the better part of a year. Pushing my fingertips against each other again and again, saying, “More, Ezra. Look at my hands. More, More.”
I’m handing him one cheese puff at a time, urging him to ask for more. He looks at the bag, leans toward it, says, “Mm mm mm.” finally, he does it. He presses his chubby dimpled hands together. He watches them as he does. “More!” I yell. “You signed ‘more’!” I hand him the puff and he sticks it in his mouth, unfazed.
When Ezra is almost two years old, he still isn’t consistent with sign language and he has no words, so I think about pursuing outside opinions. I call Early Intervention first, a state program that is mandated by federal law.
“What sorts of things are you concerned about?” the coordinator asks me on the phone. “I’m not concerned,” I say. I’m aware I’m pacing as we talk. “But I know he’s supposed to have a few words by now, and I figure speech therapy could help.”
“So, he isn’t talking yet. How old is he, again?” I tell her, not wanting to. “He’s twenty-one months.” “Any other concerns?”
His poor eating. No pointing. Crying when songs end. He cries in terrible despair if someone sings one of his favorite songs.
“No,” I say. “No. Just the words.” We set a date and time, and I immediately start to dread the coming appointment. In moments, I am stricken with instinctual fear. What have I done?
< My Thoughts > “Crying when songs end.”
Our Sonny cannot tolerate when something ends, whether it’s a song or a DVD. So we make every effort to keep his favorites available on a ‘loop’. Somehow in the same vein, the ‘Sonny Ending/Empty Time To Panic Category’ are empty glasses, empty cups, empty food dishes, and empty or full cereal boxes. This phobia-like behavior has become lessened over the years. Apparently he finally trusts us to refill and replenish before the disappearance becomes too crushing. Smiles.
6% Somehow I intuit that I will have to scramble to keep him safe, to try to hold on to him. That our lives are about to change. The day of the evaluation, Ezra is in a good mood. He has gotten a good night’s sleep. He’s been playing all morning.
The team – a lead evaluator (whom I spoke with on the phone), a pregnant speech therapist, and an occupational therapist – marches into the house with a bag full of toys and eyes Ezra. My heart batters against my chest.
Next, the lead evaluator begins with questions, questions I will hear often during the next couple years, questions I will answer again and again:
7% By the time a half hour has passed, Ezra is full upset. He runs toward me, sobbing. “Mama!” he calls.
I see he says Mama, the lead evaluator says without emotion, while Ezra clings to me. She jots this into her notebook. I hold him, his small, soft body, and nod, wanting Ezra to gain this one positive mark today.
When they finally leave, I put Ezra down for his nap and then I sit on the couch and cry. I call Michael. “Why are we doing this?” he asks. “To be a good mom, I have to help him.” I have to pull myself together.
We have another evaluation coming up in just a couple months, this one with a private hospital’s rehabilitation center, which is covered by our insurance. I want Ezra to receive as much speech therapy as possible.
Early intervention warned me that their budget rarely allows for therapy more often than every other week. I haven’t yet come to know that the world will not welcome my child.
Ezra watches the fish in the aquarium. I crouch down with him and point out the different fish, modeling for him the words. “Blue fish. And there! A yellow fish. So pretty.” He stares into the tank. I just found out a few weeks ago that I’m pregnant again. I feel uncertain about having another baby.
We received a copy of Early Intervention’s report. How can I describe what it feels like to read such a document about my son? Substandard scores. How can I explain the pain? He is only doing about 10% as well as other kids his age. He is in the bottom percentile, not even on the charts.
9% “Lots of children look fine, but they’re really not,” says the woman evaluator with the emotion of a robot. I wish I could formulate what to say. It’s taken me years to know what to say. “Yes, he does a lot of thing differently from other kids his age but there is nothing ‘wrong.’”
< My Thoughts > “…but there is nothing ‘wrong.’”
This is where parents may find themselves on the ‘slippery slope’. Bonnie Zampino (2016) writes – “We aren’t aware (of what ‘some’ autism looks like), not at all. But, we can open our eyes and understand that all autism isn’t about the high functioning child who is “quirky” but okay to be around. Neither is autism about the six-year-old who can play Piano Man better than Billy Joel. Autism can be sad. Autism can be messy. Autism can be violent. Autism can be isolating.”
Autism can be some of the things that Sonny does, such as self-injurious behavior (SIBs) that is compulsive, ritualistic, and some sort of stimulation or communication. Before finding a therapeutic dosage of medication to help him, he would also strike out to bite or hit others. He would stick a finger in his eye, poking and poking until restrained. There are other undesirable and even dangerous behaviors, which I will not go into. I’m sure you get the idea of how frightening this can be.
9% I will always be considered a wayward mother. I scoop him up and we head toward the exit. I call Michael. “Kerry,” he says. “Do you hear how ridiculous that is? Ezra’s not talking yet, that’s all.” All I can see is her disapproving face.
A few weeks later, the report arrives in the mail. I throw it on the kitchen counter, unopened, and leave it there for a few days. I already know what’s in it.
10% A friend who is also a child therapist tells me, “You may have to accept that he’s developmentally delayed. But he’s not autistic.” Yet a small part of me – that part I used to trust but now question relentlessly – knows…
Early Intervention sends another therapist. His name is Dave. He sits on the floor with Ezra. He says to me “He’s doing some really neat things here.” Dave beams at everything Ezra does, but he will only be able to come every other week.
11% The next time Dave visits, I ask him if he knows any private speech therapists. He tells me about Patti, who, he says; he would want working with his own children.
Patti and I chat first on the phone. I like her immediately. Our insurance won’t cover Patti’s sessions, but I set up appointments with her anyway. We’ll just have to figure it out.
I also have to find an occupational therapist, because I’m quickly building awareness that Ezra has issues with eating. When he began to feed himself, he pinched Cheerios between his pointer finger and thumb and pressed them to his lips.
But now he won’t eat anything but organic cheese puffs, cookies, and pizza. He does eat sand, clay, and paper. Even dried twigs and muddy leaves.
Eventually I’ll call this what it is: pica, a childhood disorder characterized by compulsive and persistent cravings for nonfood items, such as mud and paper. Pica is common among children with autism.
< My Thoughts > “Pica is common among children with autism.”
Pica behavior usually decreases with age, however adults with the combination of severe Autism Spectrum Disorder (ASD) and Intellectual Disabilities (ID) may still engage in this dangerous and challenging behavior, according to Matson, et al.
(2012). They go on to say that the underlying causes of this disorder and impairment of daily functioning and poor impulse control, are still unknown, today.
Hirsch & Myles (1996) tell us that the name ‘pica’ originates from the Latin word for magpie, a bird known to pick up non-food items to satisfy hunger or curiosity. They sound the alarm that this “abnormal craving for non-food items such as paint, dirt, clay, grass, paper, even glass and small batteries can, and do, result in hospitalization and even death.” For instance, swallowing multiple magnets can cause them to engage, closing off parts of the intestine or bowel, resulting in tissue perforation and death. Child may only experience flu-like symptoms.
Further, these authors explain that the Pica Box can be successful when used as an intervention to reduce, control, or eliminate this behavior. With hyper-vigilance, in a controlled setting, when the child shows an interest in eating non-food items in the environment, they are offered safe items which mimic the chewy items they crave. The pica box contains substitutes such as beef jerky for tree bark, raisins or Grape Nuts for dirt/mud/sand, marshmallows for cloth items, clean wash cloth to suck on. If this therapy works, it can save the child from severe illness, poisoning, broken teeth, mouth lacerations, or even death. An indicator that the child is about to look for a non-food item is they sometimes start scavenging around on the ground or floor, mouthing toys, beginning to breath rapidly and make low throaty sounds.
11% I worry, and worry. It’s impossible not to. Pregnant with my second baby, I have genetic testing done.
12% Then they do an ultrasound, where it looks like everything is normal. Finally, they take some blood. I don’t think about politics. I don’t think about autism, which can’t be detected through blood or ultrasound. Not yet.
I’ve birthed one autistic child – if indeed that’s what Ezra is – my chances of having another one increase. I can’t think about it. I can’t go there.
I won’t have him diagnosed. Why? You must be wondering. Why not just find out for sure? Because I wouldn’t believe it. Because he’s young enough that development is too variable. Because no one seems to have a clear grasp on what autism really is. Because right now everyone and their brother is being diagnosed with autism. And, because I’m not ready.
16% Ezra has some words now. He says the word “more” and he touches my belly and says “baby” and he can say “ball” and “car” and “please” and “book.” He learns more sign language from his video. He also can verbally put a few words together, at our urging: “Read book.”
When he reaches for my hand to try to pull me somewhere, I teach him to say, “Come, Mama.” It sounds like “Um, Ama” when he says it. Dave, the speech therapist, is mightily impressed. He tells me, “This guy is going to be a talker, I’m sure of it.” I ask him to say it again, to tell me why he says that. I want someone to tell me my son will be okay.
I buy a few books on autism. Just a few for now. I am most moved by Stanley Greenspan’s book, which describes Floortime, something I realize I already do with Ezra. It engages the child by allowing him to lead. So, for instance, if Ezra pushes a car along the floor, as he often does, I take another can and crash it into his. Always, Ezra laughs, and often it prompts him to say “more.”
< My Thoughts > “Floortime Play-therapy…” 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, thus leading them to join into the shared world the family lives in. This will help them master their functional and developmental capacities.
Here is one small example of beginning ‘shared attention’ and beginning ‘engagement’ which takes place on a little island (on the floor). The child is alone on the floor playing with his favorite toy when the cat-and-mouse game begins.
Someone (mom, dad, or sister) gets down on the floor with the child and engages them by touching the toy or placing some kind of obstruction (a hand) in front of the child’s movement. Eventually the obstruction is placing the toy behind a door. He looks back at you then gets up and bangs on the door.
“Should I help you?” you ask. He pulls on the door. “Open?” you ask? Here the child is cued to sign or say “Open”. Thus, challenging the child by moving him up to a higher level of relating, communicating, and thinking.
Many parents, teachers, and other professionals like this program because it is designed to be family focused. It’s intended to allow the family many new interactive hours of enjoyment with their formerly reclusive child, helping the child in all
settings and environments. There are different Floortime levels and licenses obtainable at a cost, but you can probably find someone in your child’s school who can get you started for free. Smiles.
17% We go to the birthday parties of kids from the moms’ group. At one, a child sits coloring a picture, and Ezra toddles over and takes a crayon. “Ee ee ee!” the little girl yells, so I take the crayon from Ezra and hand it back to the girl.
Then Ezra walks right into the middle of a game a group of kids are playing. “Hey!” they yell. I steer him away. Then he reaches for an ornament hanging from the Christmas tree they still have up.
“I’m sorry,” I tell him. “You have to put that back.” I take it from his hands and hang it back up myself. He walks on, looking for something he’s allowed to do. I stay behind him, my eyes on everything he does.
The other parents mingle. They drink their wine and chat, letting their children play. I wish I could do the same. After a while they sing the birthday song, and I tense up, afraid Ezra will cry hearing this song he knows sung out of tune, or just not quite the way he wants.
He doesn’t cry, but he does pull me outside, way from the singing and festivities, and where he can rub his hands on the mud in a little puddle near the side of the house. I can see the party through the sliding glass door, and I can’t help but feel frustrated and alone.
Why should anyone else miss out on the fun if they don’t have to? I have to. That’s the simple truth. But it’s also the reason I stop going to these parties. My friends also tire of me.
< My Thoughts > Isolation… “I stop going to these parties. My friends also tire of me.”
Not only is Ezra’s behavior not working for him, it’s apparently not working for mom either. Severity of behavior, amount of support, temperament and personalities involved all contribute to parents either becoming isolated or seeking intervention. Then there is this… as soon as he goes to public school his ‘behaviors’ will be noticed.
Retrieved from WebMD Archives, online – Autism in the Classroom, by Kelley Colihan says that parents in denial tell her, “School just doesn’t get my kid.” Another said, “Since he’s been in school, my son is developing behavior problems.” She goes on to advise parents that, “When your child has Autism Spectrum disorder, school can be extremely difficult.”
17% I’m hormonal and anxious. I’m no longer counseling at the school, which took my mind off my fears about Ezra at least a little. I’m about to give birth to a baby.
Michael sees a job on the East Coast, in a Massachusetts town where we could live in my late grandparents’ condominium for free, where we’d be just a few hours’ drive from family and friends we miss, I encourage him to apply.
The company calls him a few days later, and by the following week, we’re faced with the decision to move. Obviously, moving to the other side of the country will not transform Ezra into a typically developing child. It won’t make the worry or the autism go away.
But we decide to go, and we start to make plans. Meanwhile, I have to have this baby, and I do, that night.
I hold his tiny red body, and Michael and I kiss his little eyes and nose. He has a full head of hair just like Ezra did, but Griffin’s is brown, not blond.
18% We refuse everything the hospital recommends for Griffin, just like we did for Ezra: no shots, no circumcision, no eye goop, no nothing. The angry pediatrician has us sign a release and we go home.
< My Thoughts > We refuse everything the hospital recommends for Griffin, just like we did for Ezra…”
My granddaughter is studying to be a ‘doula’. That’s a trained professional who provides continuous physical, emotional and informational support to a mother before, during and after childbirth. She says –“Today’s parents prefer choices when it comes to newborn protocol. They find factual information in order to make an ‘informed consent’ during current birthing procedures for mother and child.”
“No shots”… Some of the choices available to parents regarding vaccinating their newborn child range from those who chose not to vaccinate, to those choosing selective vaccinations, or those vaccinating on a delayed schedule. This should be discussed with their health professionals before giving birth.
“No circumcision”… The American Academy of Pediatrics (AAP) cite – Parents can discuss the benefits and risks of circumcision and the forms of analgesia available with their doctor. Circumcision they say, is not essential to a child’s health, but may be chosen for religious, cultural, or hygienic reasons. Or, it is chosen so their son will not be different than the other men in the family. This should be discussed with their health professionals before giving birth.
“No eye goop”… Because eye infections, like neonatal conjunctivitis, in newborns are rapidly progressive and can cause permanent damage to the cornea, antibiotics are squirted into the baby’s eyes after both vaginal and Caesarean section deliveries. Some say it is fine to delay treatment for a few hours so mom and baby can have a chance to bond and breastfeed for the first time. While others don’t believe it’s necessary at all. This should be discussed with their health professionals before giving birth.
18% In the morning, Michael brings Ezra upstairs. He comes onto the bed, and I show him his new baby brother. I don’t know how this will go. Ezra, I say, “Come here, come see the baby. Do you see the baby?” Ezra ignores me.
Finally, he looks at Griffin for just a beat. “Baby,” he says, appeasing me. Six weeks later, we board a plane to Massachusetts.
Our first week in the Berkshires, we stay in a hotel. Nadine, the au pair, will join us in a couple of weeks.
We’re in way over our heads. We didn’t think this through. We were already struggling with concerns about Ezra. We are not at our best. But now we have piled on a move, another house, another world. Michael starts a new job. We don’t know where anything is. We have a brand-new baby and a child whom we don’t understand. What have we done?
19% Outside, snow pads the ground. Black, craggy trees stand against the cold white sky floating down in prism flakes to the lake below. As a child, I spent a lot of time in this town.
Ezra stands at the window, watching the wet snow falling flatly to the ground. He is my child, my love, but I don’t know what it is he’s thinking about, what he needs from me at any moment. I hold Griffin in my arms. Back in my adolescence, did I imagine what my life would be? Not really. But then, none of us can know what our lives will bring.
20% Michael goes off to his new job each day, and I try to settle in. I put the boys into the car and drive, trying to find what we need. I stick to the tangible essentials.
I find a store that carries Ezra’s cheese puffs and cookies. Since the move, he won’t eat pizza, the one item he ate that seemed like food.
21% My father comes to visit. He is… well, he’s an odd bird. In so many ways. He comes to visit and tells us about his day by saying, “Let’s see, I woke up this morning, and then I went to the bank, and I said hello to the teller, who was wearing a pin that had a flower on it…”
I used to think he behaved like this because he was insensitive and self-absorbed and didn’t think enough of his own kids to ever listen to what we needed. But since Ezra’s issues, I’m beginning to wonder if my father’s on the edge of the spectrum, with features of Asperger’s syndrome. Both my uncle and my father are engineers, and both are ridiculously intelligent.
32% I know most autism specialists believe a desire to gain other people’s approval is something Ezra needs to develop. I know why they think this. A lot of autistic kids want badly to make friends, but they don’t know how to go about doing it. They assume Ezra is just like all autistic children. But he isn’t. He’s his own guy.
He’s immensely self-contained. Is that the worst thing in the world? To decide he needs human relationships is badly as the rest of us do is presumptuous and arrogant. It suggests he has to be similar to us to be happy.
Meanwhile, I’m pretty sure Ezra is a lot happier than I am and most of the people I meet. Let’s be clear: Ezra won’t be like you. He won’t be like me. He’s always, always, always going to be only him.
35% Test results come back from Dr. Destroyer’s office. Ezra’s sensitive to wheat and milk. (The two things he eats.) To make sure he receives any nutrition I have to give him Frankenmilk. A pediatrician told me long ago that I should replace what Ezra eats with broccoli and steak. “Eventually,” she told me, “he’ll eat it.”
No, Ezra will put mud and dirty leaves in his mouth, before eating broccoli and steak. Years later, I’ll feel fine about my food choices for Ezra, since the gluten and dairy free diet, the most pervasive of alternative therapies for autism is based not on any scientific substantiation, but the theory of Norwegian doctor and researcher, Kalle Reichelt who believed that our children cannot completely breakdown wheat and dairy products.
36% We take Ezra off cow’s milk and have him drink rice milk instead. We blend the rice milk into cow’s milk gradually until we switch him all the way over to rice without incident.
We learn from the lab report that Ezra doesn’t have excess heavy metals. Thank God for that, since chelation, it turns out, is as dangerous as I suspected. The test results do confirm Ezra’s body has a tremendous overgrowth of candida. Dr. Destroyer prescribes the medication to treat the candida, which we add to Ezra’s Frankenmilk for three weeks. Do we see a difference? Perhaps he’s a little more comfortable. But he’s still autistic.
< My Thoughts > “Chelation therapy…”
Web MD tells us the chelation therapy is a chemical which when injected into the bloodstream through the veins, is said to remove heavy metals and/or minerals for the body. Chelation means “to grab” or “to bind.” The body can’t get rid of some heavy metals by itself; they are – lead, mercury, copper, iron, arsenic, aluminum and calcium. This therapy may not be covered by insurance companies.
All this doctor stuff pushes me to think more about the whole idea of Ezra’s being autistic. Autism is not actually a thing. It’s a constellation of symptoms. The questions that I have are more about what causes his autism.
Is it something outside of him, something that courses through his system like a virus, harming the real self? Or is it interwoven with the fiber of his being? Where is the line between helping him and negating who he is?
I’m beginning to see the danger that comes with trying to “remove” his autism. What will he believe about himself as a human being, as a person with worth in the world? I also think of my own needs in all of this, because I should.
< My Thoughts > “Where is the line between helping him and negating who he is?”
Suma, et al. (2016), tell us that early diagnosis and the severity of the child’s ‘interactive difficulties’ appears to influence what the parents do next. Seemingly, lower quality interactions and/or growing isolation between parents and child, can lead parents to look for intervention. The ‘interactive difficulties’ they talk about were problems with joint engagement and communication of shared interests. These seemed to be the greatest challenges rushing many of the 79 families in this study to find help. Ironically, parents complained that after finally deciding to get help, they couldn’t find services in their area, or had to get on long waiting lists. Ugh!
37% It’s our society that pronounces Ezra disordered, a system of mental health that determines a clear line between people’s neurology and defines whether a person is right or wrong. He has to fit this mold to be considered worthwhile, something I’m quite sure he’ll never do.
45% I begin to share my concerns about Ezra, about how I just want to accept him as he is, how I want him to be happy, to love life. A lot of parents like me want to ignore this notion that there is a brief window in which our children can be helped, but we are afraid to. We’re afraid our instincts might be wrong.
We’re afraid that we are failing our children if we don’t follow the path of participating in forty hours of behavioral therapy every week, receive chelation, and be made into something other than who they are.
I believe that forty hours per week of any therapy for a child like Ezra would be more stressful than useful, at least at this young age.
I believe it is a dangerous assumption that all children on the spectrum would need the same treatment when, in reality, children are so different from one another in their abilities and challenges and behaviors.
I believe some children might be harmed by vaccines or environmental pollutants, and other children, such as Ezra were from the start who they are today and will be in the future.
I believe random things happen in utero as a fetus develops, things no one could have predicted or done anything about, that lead to autism.
I believe it makes no sense to argue that one cause or another leads to autism, because each family’s experience is so utterly personal.
I believe, as I always have, that our stories help one another, even as they are different in all of these ways.
< My Thoughts > “…our stories help one another.”
To discover the rest of the story… when Kerry and Michael decide to be more honest with each other, to admit their fears, in desperation about Ezra they move back to Portland.
End of Excerpts of Seeing Ezra, with < My Thoughts > by Sara Luker
====================
References used in < My Thoughts > are:
Hirsch, N., Myles, B. (1996). The Use of a Pica Box in Reducing Pica Behavior in a Student with Autism; Focus on Autism & Other Developmental Disabilities; V11N4, p222-225.
Matson, J., Hattier, M., Turygin, N. (2012). An Evaluation of Social Skills in Adults with Pica, Autism Spectrum Disorders, and Intellectual Disability; Journal of Developmental Physical Disability; V24, p505-514.
Suma, K. Adamson, L., Bakeman, R., Robins, D., Abrams, D. (2016). After Early Autism Diagnosis: Changes in Intervention and Parent – Child Interaction; Journal of Autism & Developmental Disorders; V26, p2720-2733.
Zampino, B. (2016). My Son Has the Kind of Autism Nobody Talks About – Term Life.
Recently retrieved from: http://medicinetimes.info/2016/05/08/my-son-has-the-kind-of-tas-aout-term-life/
“What sorts of things are you concerned about?” the coordinator asks me on the phone. “I’m not concerned,” I say. I’m aware I’m pacing as we talk. “But I know he’s supposed to have a few words by now, and I figure speech therapy could help.”
“So, he isn’t talking yet. How old is he, again?” I tell her, not wanting to. “He’s twenty-one months.” “Any other concerns?”
His poor eating. No pointing. Crying when songs end. He cries in terrible despair if someone sings one of his favorite songs.
“No,” I say. “No. Just the words.” We set a date and time, and I immediately start to dread the coming appointment. In moments, I am stricken with instinctual fear. What have I done?
< My Thoughts > “Crying when songs end.”
Our Sonny cannot tolerate when something ends, whether it’s a song or a DVD. So we make every effort to keep his favorites available on a ‘loop’. Somehow in the same vein, the ‘Sonny Ending/Empty Time To Panic Category’ are empty glasses, empty cups, empty food dishes, and empty or full cereal boxes. This phobia-like behavior has become lessened over the years. Apparently he finally trusts us to refill and replenish before the disappearance becomes too crushing. Smiles.
6% Somehow I intuit that I will have to scramble to keep him safe, to try to hold on to him. That our lives are about to change. The day of the evaluation, Ezra is in a good mood. He has gotten a good night’s sleep. He’s been playing all morning.
The team – a lead evaluator (whom I spoke with on the phone), a pregnant speech therapist, and an occupational therapist – marches into the house with a bag full of toys and eyes Ezra. My heart batters against my chest.
Next, the lead evaluator begins with questions, questions I will hear often during the next couple years, questions I will answer again and again:
- Tell me about your pregnancy with Ezra. It was good, easy.
- Any excessive nausea? Any medication? Any smoking? Drinking? Drug use? No. No. No. No. No.
- Does he tantrum? Um, sometimes. He’s one (or two or three). Don’t all one-year olds (or two-year-olds or three-year olds tantrum?)
- Does he cry when you take a toy from him? I suppose so. I don’t generally take his toys away from him.
- He doesn’t say “Mama” when he wants you to come to him? No. He has no words.
- Does he like to spin around? Yes, of course. Don’t all children?
- When he spins, does he grow dizzy? I think so.
- But do you know for sure? I guess not, no.
7% By the time a half hour has passed, Ezra is full upset. He runs toward me, sobbing. “Mama!” he calls.
I see he says Mama, the lead evaluator says without emotion, while Ezra clings to me. She jots this into her notebook. I hold him, his small, soft body, and nod, wanting Ezra to gain this one positive mark today.
When they finally leave, I put Ezra down for his nap and then I sit on the couch and cry. I call Michael. “Why are we doing this?” he asks. “To be a good mom, I have to help him.” I have to pull myself together.
We have another evaluation coming up in just a couple months, this one with a private hospital’s rehabilitation center, which is covered by our insurance. I want Ezra to receive as much speech therapy as possible.
Early intervention warned me that their budget rarely allows for therapy more often than every other week. I haven’t yet come to know that the world will not welcome my child.
Ezra watches the fish in the aquarium. I crouch down with him and point out the different fish, modeling for him the words. “Blue fish. And there! A yellow fish. So pretty.” He stares into the tank. I just found out a few weeks ago that I’m pregnant again. I feel uncertain about having another baby.
We received a copy of Early Intervention’s report. How can I describe what it feels like to read such a document about my son? Substandard scores. How can I explain the pain? He is only doing about 10% as well as other kids his age. He is in the bottom percentile, not even on the charts.
9% “Lots of children look fine, but they’re really not,” says the woman evaluator with the emotion of a robot. I wish I could formulate what to say. It’s taken me years to know what to say. “Yes, he does a lot of thing differently from other kids his age but there is nothing ‘wrong.’”
< My Thoughts > “…but there is nothing ‘wrong.’”
This is where parents may find themselves on the ‘slippery slope’. Bonnie Zampino (2016) writes – “We aren’t aware (of what ‘some’ autism looks like), not at all. But, we can open our eyes and understand that all autism isn’t about the high functioning child who is “quirky” but okay to be around. Neither is autism about the six-year-old who can play Piano Man better than Billy Joel. Autism can be sad. Autism can be messy. Autism can be violent. Autism can be isolating.”
Autism can be some of the things that Sonny does, such as self-injurious behavior (SIBs) that is compulsive, ritualistic, and some sort of stimulation or communication. Before finding a therapeutic dosage of medication to help him, he would also strike out to bite or hit others. He would stick a finger in his eye, poking and poking until restrained. There are other undesirable and even dangerous behaviors, which I will not go into. I’m sure you get the idea of how frightening this can be.
9% I will always be considered a wayward mother. I scoop him up and we head toward the exit. I call Michael. “Kerry,” he says. “Do you hear how ridiculous that is? Ezra’s not talking yet, that’s all.” All I can see is her disapproving face.
A few weeks later, the report arrives in the mail. I throw it on the kitchen counter, unopened, and leave it there for a few days. I already know what’s in it.
10% A friend who is also a child therapist tells me, “You may have to accept that he’s developmentally delayed. But he’s not autistic.” Yet a small part of me – that part I used to trust but now question relentlessly – knows…
Early Intervention sends another therapist. His name is Dave. He sits on the floor with Ezra. He says to me “He’s doing some really neat things here.” Dave beams at everything Ezra does, but he will only be able to come every other week.
11% The next time Dave visits, I ask him if he knows any private speech therapists. He tells me about Patti, who, he says; he would want working with his own children.
Patti and I chat first on the phone. I like her immediately. Our insurance won’t cover Patti’s sessions, but I set up appointments with her anyway. We’ll just have to figure it out.
I also have to find an occupational therapist, because I’m quickly building awareness that Ezra has issues with eating. When he began to feed himself, he pinched Cheerios between his pointer finger and thumb and pressed them to his lips.
But now he won’t eat anything but organic cheese puffs, cookies, and pizza. He does eat sand, clay, and paper. Even dried twigs and muddy leaves.
Eventually I’ll call this what it is: pica, a childhood disorder characterized by compulsive and persistent cravings for nonfood items, such as mud and paper. Pica is common among children with autism.
< My Thoughts > “Pica is common among children with autism.”
Pica behavior usually decreases with age, however adults with the combination of severe Autism Spectrum Disorder (ASD) and Intellectual Disabilities (ID) may still engage in this dangerous and challenging behavior, according to Matson, et al.
(2012). They go on to say that the underlying causes of this disorder and impairment of daily functioning and poor impulse control, are still unknown, today.
Hirsch & Myles (1996) tell us that the name ‘pica’ originates from the Latin word for magpie, a bird known to pick up non-food items to satisfy hunger or curiosity. They sound the alarm that this “abnormal craving for non-food items such as paint, dirt, clay, grass, paper, even glass and small batteries can, and do, result in hospitalization and even death.” For instance, swallowing multiple magnets can cause them to engage, closing off parts of the intestine or bowel, resulting in tissue perforation and death. Child may only experience flu-like symptoms.
Further, these authors explain that the Pica Box can be successful when used as an intervention to reduce, control, or eliminate this behavior. With hyper-vigilance, in a controlled setting, when the child shows an interest in eating non-food items in the environment, they are offered safe items which mimic the chewy items they crave. The pica box contains substitutes such as beef jerky for tree bark, raisins or Grape Nuts for dirt/mud/sand, marshmallows for cloth items, clean wash cloth to suck on. If this therapy works, it can save the child from severe illness, poisoning, broken teeth, mouth lacerations, or even death. An indicator that the child is about to look for a non-food item is they sometimes start scavenging around on the ground or floor, mouthing toys, beginning to breath rapidly and make low throaty sounds.
11% I worry, and worry. It’s impossible not to. Pregnant with my second baby, I have genetic testing done.
12% Then they do an ultrasound, where it looks like everything is normal. Finally, they take some blood. I don’t think about politics. I don’t think about autism, which can’t be detected through blood or ultrasound. Not yet.
I’ve birthed one autistic child – if indeed that’s what Ezra is – my chances of having another one increase. I can’t think about it. I can’t go there.
I won’t have him diagnosed. Why? You must be wondering. Why not just find out for sure? Because I wouldn’t believe it. Because he’s young enough that development is too variable. Because no one seems to have a clear grasp on what autism really is. Because right now everyone and their brother is being diagnosed with autism. And, because I’m not ready.
16% Ezra has some words now. He says the word “more” and he touches my belly and says “baby” and he can say “ball” and “car” and “please” and “book.” He learns more sign language from his video. He also can verbally put a few words together, at our urging: “Read book.”
When he reaches for my hand to try to pull me somewhere, I teach him to say, “Come, Mama.” It sounds like “Um, Ama” when he says it. Dave, the speech therapist, is mightily impressed. He tells me, “This guy is going to be a talker, I’m sure of it.” I ask him to say it again, to tell me why he says that. I want someone to tell me my son will be okay.
I buy a few books on autism. Just a few for now. I am most moved by Stanley Greenspan’s book, which describes Floortime, something I realize I already do with Ezra. It engages the child by allowing him to lead. So, for instance, if Ezra pushes a car along the floor, as he often does, I take another can and crash it into his. Always, Ezra laughs, and often it prompts him to say “more.”
< My Thoughts > “Floortime Play-therapy…” 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, thus leading them to join into the shared world the family lives in. This will help them master their functional and developmental capacities.
Here is one small example of beginning ‘shared attention’ and beginning ‘engagement’ which takes place on a little island (on the floor). The child is alone on the floor playing with his favorite toy when the cat-and-mouse game begins.
Someone (mom, dad, or sister) gets down on the floor with the child and engages them by touching the toy or placing some kind of obstruction (a hand) in front of the child’s movement. Eventually the obstruction is placing the toy behind a door. He looks back at you then gets up and bangs on the door.
“Should I help you?” you ask. He pulls on the door. “Open?” you ask? Here the child is cued to sign or say “Open”. Thus, challenging the child by moving him up to a higher level of relating, communicating, and thinking.
Many parents, teachers, and other professionals like this program because it is designed to be family focused. It’s intended to allow the family many new interactive hours of enjoyment with their formerly reclusive child, helping the child in all
settings and environments. There are different Floortime levels and licenses obtainable at a cost, but you can probably find someone in your child’s school who can get you started for free. Smiles.
17% We go to the birthday parties of kids from the moms’ group. At one, a child sits coloring a picture, and Ezra toddles over and takes a crayon. “Ee ee ee!” the little girl yells, so I take the crayon from Ezra and hand it back to the girl.
Then Ezra walks right into the middle of a game a group of kids are playing. “Hey!” they yell. I steer him away. Then he reaches for an ornament hanging from the Christmas tree they still have up.
“I’m sorry,” I tell him. “You have to put that back.” I take it from his hands and hang it back up myself. He walks on, looking for something he’s allowed to do. I stay behind him, my eyes on everything he does.
The other parents mingle. They drink their wine and chat, letting their children play. I wish I could do the same. After a while they sing the birthday song, and I tense up, afraid Ezra will cry hearing this song he knows sung out of tune, or just not quite the way he wants.
He doesn’t cry, but he does pull me outside, way from the singing and festivities, and where he can rub his hands on the mud in a little puddle near the side of the house. I can see the party through the sliding glass door, and I can’t help but feel frustrated and alone.
Why should anyone else miss out on the fun if they don’t have to? I have to. That’s the simple truth. But it’s also the reason I stop going to these parties. My friends also tire of me.
< My Thoughts > Isolation… “I stop going to these parties. My friends also tire of me.”
Not only is Ezra’s behavior not working for him, it’s apparently not working for mom either. Severity of behavior, amount of support, temperament and personalities involved all contribute to parents either becoming isolated or seeking intervention. Then there is this… as soon as he goes to public school his ‘behaviors’ will be noticed.
Retrieved from WebMD Archives, online – Autism in the Classroom, by Kelley Colihan says that parents in denial tell her, “School just doesn’t get my kid.” Another said, “Since he’s been in school, my son is developing behavior problems.” She goes on to advise parents that, “When your child has Autism Spectrum disorder, school can be extremely difficult.”
17% I’m hormonal and anxious. I’m no longer counseling at the school, which took my mind off my fears about Ezra at least a little. I’m about to give birth to a baby.
Michael sees a job on the East Coast, in a Massachusetts town where we could live in my late grandparents’ condominium for free, where we’d be just a few hours’ drive from family and friends we miss, I encourage him to apply.
The company calls him a few days later, and by the following week, we’re faced with the decision to move. Obviously, moving to the other side of the country will not transform Ezra into a typically developing child. It won’t make the worry or the autism go away.
But we decide to go, and we start to make plans. Meanwhile, I have to have this baby, and I do, that night.
I hold his tiny red body, and Michael and I kiss his little eyes and nose. He has a full head of hair just like Ezra did, but Griffin’s is brown, not blond.
18% We refuse everything the hospital recommends for Griffin, just like we did for Ezra: no shots, no circumcision, no eye goop, no nothing. The angry pediatrician has us sign a release and we go home.
< My Thoughts > We refuse everything the hospital recommends for Griffin, just like we did for Ezra…”
My granddaughter is studying to be a ‘doula’. That’s a trained professional who provides continuous physical, emotional and informational support to a mother before, during and after childbirth. She says –“Today’s parents prefer choices when it comes to newborn protocol. They find factual information in order to make an ‘informed consent’ during current birthing procedures for mother and child.”
“No shots”… Some of the choices available to parents regarding vaccinating their newborn child range from those who chose not to vaccinate, to those choosing selective vaccinations, or those vaccinating on a delayed schedule. This should be discussed with their health professionals before giving birth.
“No circumcision”… The American Academy of Pediatrics (AAP) cite – Parents can discuss the benefits and risks of circumcision and the forms of analgesia available with their doctor. Circumcision they say, is not essential to a child’s health, but may be chosen for religious, cultural, or hygienic reasons. Or, it is chosen so their son will not be different than the other men in the family. This should be discussed with their health professionals before giving birth.
“No eye goop”… Because eye infections, like neonatal conjunctivitis, in newborns are rapidly progressive and can cause permanent damage to the cornea, antibiotics are squirted into the baby’s eyes after both vaginal and Caesarean section deliveries. Some say it is fine to delay treatment for a few hours so mom and baby can have a chance to bond and breastfeed for the first time. While others don’t believe it’s necessary at all. This should be discussed with their health professionals before giving birth.
18% In the morning, Michael brings Ezra upstairs. He comes onto the bed, and I show him his new baby brother. I don’t know how this will go. Ezra, I say, “Come here, come see the baby. Do you see the baby?” Ezra ignores me.
Finally, he looks at Griffin for just a beat. “Baby,” he says, appeasing me. Six weeks later, we board a plane to Massachusetts.
Our first week in the Berkshires, we stay in a hotel. Nadine, the au pair, will join us in a couple of weeks.
We’re in way over our heads. We didn’t think this through. We were already struggling with concerns about Ezra. We are not at our best. But now we have piled on a move, another house, another world. Michael starts a new job. We don’t know where anything is. We have a brand-new baby and a child whom we don’t understand. What have we done?
19% Outside, snow pads the ground. Black, craggy trees stand against the cold white sky floating down in prism flakes to the lake below. As a child, I spent a lot of time in this town.
Ezra stands at the window, watching the wet snow falling flatly to the ground. He is my child, my love, but I don’t know what it is he’s thinking about, what he needs from me at any moment. I hold Griffin in my arms. Back in my adolescence, did I imagine what my life would be? Not really. But then, none of us can know what our lives will bring.
20% Michael goes off to his new job each day, and I try to settle in. I put the boys into the car and drive, trying to find what we need. I stick to the tangible essentials.
I find a store that carries Ezra’s cheese puffs and cookies. Since the move, he won’t eat pizza, the one item he ate that seemed like food.
21% My father comes to visit. He is… well, he’s an odd bird. In so many ways. He comes to visit and tells us about his day by saying, “Let’s see, I woke up this morning, and then I went to the bank, and I said hello to the teller, who was wearing a pin that had a flower on it…”
I used to think he behaved like this because he was insensitive and self-absorbed and didn’t think enough of his own kids to ever listen to what we needed. But since Ezra’s issues, I’m beginning to wonder if my father’s on the edge of the spectrum, with features of Asperger’s syndrome. Both my uncle and my father are engineers, and both are ridiculously intelligent.
32% I know most autism specialists believe a desire to gain other people’s approval is something Ezra needs to develop. I know why they think this. A lot of autistic kids want badly to make friends, but they don’t know how to go about doing it. They assume Ezra is just like all autistic children. But he isn’t. He’s his own guy.
He’s immensely self-contained. Is that the worst thing in the world? To decide he needs human relationships is badly as the rest of us do is presumptuous and arrogant. It suggests he has to be similar to us to be happy.
Meanwhile, I’m pretty sure Ezra is a lot happier than I am and most of the people I meet. Let’s be clear: Ezra won’t be like you. He won’t be like me. He’s always, always, always going to be only him.
35% Test results come back from Dr. Destroyer’s office. Ezra’s sensitive to wheat and milk. (The two things he eats.) To make sure he receives any nutrition I have to give him Frankenmilk. A pediatrician told me long ago that I should replace what Ezra eats with broccoli and steak. “Eventually,” she told me, “he’ll eat it.”
No, Ezra will put mud and dirty leaves in his mouth, before eating broccoli and steak. Years later, I’ll feel fine about my food choices for Ezra, since the gluten and dairy free diet, the most pervasive of alternative therapies for autism is based not on any scientific substantiation, but the theory of Norwegian doctor and researcher, Kalle Reichelt who believed that our children cannot completely breakdown wheat and dairy products.
36% We take Ezra off cow’s milk and have him drink rice milk instead. We blend the rice milk into cow’s milk gradually until we switch him all the way over to rice without incident.
We learn from the lab report that Ezra doesn’t have excess heavy metals. Thank God for that, since chelation, it turns out, is as dangerous as I suspected. The test results do confirm Ezra’s body has a tremendous overgrowth of candida. Dr. Destroyer prescribes the medication to treat the candida, which we add to Ezra’s Frankenmilk for three weeks. Do we see a difference? Perhaps he’s a little more comfortable. But he’s still autistic.
< My Thoughts > “Chelation therapy…”
Web MD tells us the chelation therapy is a chemical which when injected into the bloodstream through the veins, is said to remove heavy metals and/or minerals for the body. Chelation means “to grab” or “to bind.” The body can’t get rid of some heavy metals by itself; they are – lead, mercury, copper, iron, arsenic, aluminum and calcium. This therapy may not be covered by insurance companies.
All this doctor stuff pushes me to think more about the whole idea of Ezra’s being autistic. Autism is not actually a thing. It’s a constellation of symptoms. The questions that I have are more about what causes his autism.
Is it something outside of him, something that courses through his system like a virus, harming the real self? Or is it interwoven with the fiber of his being? Where is the line between helping him and negating who he is?
I’m beginning to see the danger that comes with trying to “remove” his autism. What will he believe about himself as a human being, as a person with worth in the world? I also think of my own needs in all of this, because I should.
< My Thoughts > “Where is the line between helping him and negating who he is?”
Suma, et al. (2016), tell us that early diagnosis and the severity of the child’s ‘interactive difficulties’ appears to influence what the parents do next. Seemingly, lower quality interactions and/or growing isolation between parents and child, can lead parents to look for intervention. The ‘interactive difficulties’ they talk about were problems with joint engagement and communication of shared interests. These seemed to be the greatest challenges rushing many of the 79 families in this study to find help. Ironically, parents complained that after finally deciding to get help, they couldn’t find services in their area, or had to get on long waiting lists. Ugh!
37% It’s our society that pronounces Ezra disordered, a system of mental health that determines a clear line between people’s neurology and defines whether a person is right or wrong. He has to fit this mold to be considered worthwhile, something I’m quite sure he’ll never do.
45% I begin to share my concerns about Ezra, about how I just want to accept him as he is, how I want him to be happy, to love life. A lot of parents like me want to ignore this notion that there is a brief window in which our children can be helped, but we are afraid to. We’re afraid our instincts might be wrong.
We’re afraid that we are failing our children if we don’t follow the path of participating in forty hours of behavioral therapy every week, receive chelation, and be made into something other than who they are.
I believe that forty hours per week of any therapy for a child like Ezra would be more stressful than useful, at least at this young age.
I believe it is a dangerous assumption that all children on the spectrum would need the same treatment when, in reality, children are so different from one another in their abilities and challenges and behaviors.
I believe some children might be harmed by vaccines or environmental pollutants, and other children, such as Ezra were from the start who they are today and will be in the future.
I believe random things happen in utero as a fetus develops, things no one could have predicted or done anything about, that lead to autism.
I believe it makes no sense to argue that one cause or another leads to autism, because each family’s experience is so utterly personal.
I believe, as I always have, that our stories help one another, even as they are different in all of these ways.
< My Thoughts > “…our stories help one another.”
To discover the rest of the story… when Kerry and Michael decide to be more honest with each other, to admit their fears, in desperation about Ezra they move back to Portland.
End of Excerpts of Seeing Ezra, with < My Thoughts > by Sara Luker
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References used in < My Thoughts > are:
Hirsch, N., Myles, B. (1996). The Use of a Pica Box in Reducing Pica Behavior in a Student with Autism; Focus on Autism & Other Developmental Disabilities; V11N4, p222-225.
Matson, J., Hattier, M., Turygin, N. (2012). An Evaluation of Social Skills in Adults with Pica, Autism Spectrum Disorders, and Intellectual Disability; Journal of Developmental Physical Disability; V24, p505-514.
Suma, K. Adamson, L., Bakeman, R., Robins, D., Abrams, D. (2016). After Early Autism Diagnosis: Changes in Intervention and Parent – Child Interaction; Journal of Autism & Developmental Disorders; V26, p2720-2733.
Zampino, B. (2016). My Son Has the Kind of Autism Nobody Talks About – Term Life.
Recently retrieved from: http://medicinetimes.info/2016/05/08/my-son-has-the-kind-of-tas-aout-term-life/
