Jenny McCarthy Damn Near Killed Me

In November I began listening to my wife about her concerns for Ben. She had been extremely depressed that no one is listening to her. Me in particular. I had one time told her the story of a dog that I raised and how he backslid, that it was nothing but rebellion, ego, establishing his spot in the household. Nothing a little time wouldn’t cure. Words she was hearing from the doctors.

Erica had earlier even asked to check Ben’s blood for some sort of leukemia, she knew something wasn’t right. I didn’t.

But I did listen to her on the porch that night as she sobbed that Ben was unable to do the things he once was doing. To her it seems deadly. She said, ” Ben is a shell, an empty shell, nothing inside, it’s like someone stole our son.”

So much had been going on with me and my personal issues I was unable to pay attention much less listen to her before.  I was in denial of what was going on with Ben. I needed to be, he was my hope.

But this was November 23rd. My mother had just asked me if Ben had hearing problems, we had spent Thanksgiving with the family and she noticed he stopped paying attention to his name being called. We also noticed how different he was in comparison to his cousin who was one month older and when asked where hippopotamus live he said, “In the jungle.” Ben was doing little more than grunting. It was hard not to notice a difference. Especially for Erica who never wanted to go back down there after that. I thought she was jealous. She was heart broken.

So there we were sitting on the porch, talking. Erica felt better, I felt worse. In fact I was nervous.

I went back inside and Googled hearing problems because I felt that was what was happening, I thought that when Ben had his 106/107 fever back in January that his hearing could have been damaged. But up popped autism, over and over. I was a psychology major  and what I knew about autism had to do with children who had to wear helmets because they would beat their heads on the floor. How could my son have autism?

But I kept at it.

On November 25th I sent out an email to a list of folks who were authorities in the field of autism.  The email stated as follows:

My son is 18 months old, family says to have his hearing tested. They say it over and over. We have been replying that he hears fine, when he wants to. We never thought twice about it because he USED TO always turn to us when he heard his name. USED TO….

There are a lot of things Ben, our son, used to do. He used to mimic us, he paid attention, he pointed and ate and stayed still. Now those things are rare. I just sat on the floor with him and repeatedly asked him “where’s daddy’s shoes?” This is something he could have pointed to or gone and picked up easily a year or so ago. Instead he acted as if he couldn’t hear me or worse acted as if I wasn’t even in the room.

At 3 months my wife Erica had Ben picking colors and shapes.

By 10 months he had perfected it.

You know how when someone shows you the big dipper in the sky and for the first time since staring up into the night’s randomly scattered twinkling lights you see it … you really see it?

I began reading about autism today and I’m scared. Scared my son may have traits that could be diagnosed as autism and scared because I don’t know what to do.

I live in North Carolina. Ben had a high fever Friday and we asked the doctor about his ears and hearing. She gave us “The CHAT (Checklist for Autism in Toddlers)”. We came home and looked at it and thought it couldn’t possibly be autism, even though a couple of questions sort of hung up in the back of our throats when we asked each other about them. Could this be anything, something to consider? Is our son autistic just because he doesn’t hear us sometimes, twirls around in circles, refuses to eat anything foreign or new, has regressed in language skills and learned behavior such as picking colors and shapes, searching and finding asked for items and delivering them?

We could use some direction in how to find a little help. I would like to find someone who will tell me my son is an incredibly bright child with a lot on his mind, with perfectly normal developmental skills and that I am a typical first time father suffering from internet hypochondria. But I’ll settle for someone to just show me which end is up. Right now I’m lost.

A couple of days later I went to Barnes and Nobles and bought nearly every book I could find on autism. One of those books was Jenny McCarthy’s book “Louder than Words.” I remembered she was a new mom and had written a book earlier about the joys of parenting. But this book had a subtitle, “A Mother’s Journey in Healing Autism” I wondered what that was about.

November 28th I stayed up half the night reading half the book. The half that had to do with diagnosis. It wrecked me. Tippie-toes, hinges, ceiling fans, spinning wheels, loss of language, seizures, eating habits, no eye contact. I knew she was talking about Ben. But I still held on. Not Ben.

I woke up early, I left the bedroom and checked on Ben. A lump swelled up in my throat. My eyes watered. I sniffed and checked the clock, I had to be on set in an hour. I had a half an hour drive. I needed a shower.

In the shower something snapped. I never experienced anything like it. I sobbed as if I just discovered Ben had been eaten by a devil. How could this be? Oh my God why?

I knew it was autism. I was crushed. After the shower I thought I got my composure back but I was wrong. Half way through the bedroom Erica woke to wish me well at work. Again I broke. I couldn’t tell her. All I could say was that I was upset about Ben, that the book upset me. She made me go in to kiss Ben before I left.

I cried the entire half hour and when I got to set it was hard not to leave. I knew any moment I might fall apart and make a blubbering fool of myself.

Erica surprised me with Ben at lunch, they had dropped in and it was truly a gift. I was able to finish out the day, turn in my invoice and head home ready to tackle the days that lay ahead. Of course having no idea what those days and night would be like.

Hell it was already more than I could take.

Jenny McCarthy damn near killed me.

November 25, 2007

November 29, 2007 on set with Ben

3 responses to “Jenny McCarthy Damn Near Killed Me

  1. Autism Symptom Checklist

    Autism, which affects thought, perception and attention, is not just one disorder with a well defined set of symptoms; autism is a broad spectrum of disorders that ranges from mild to severe. In addition, the behavior usually occurs across many different situations and is consistently inappropriate for their age.
    In the diagnostic manual used to classify disabilities, the DSM-IV (American Psychiatric Association, 1994), “autistic disorder” is listed as a category under the heading of “Pervasive Developmental Disorders.” A diagnosis of autistic disorder is made when an individual displays 6 or more of 12 symptoms listed across three major areas: social interaction, communication, and behavior. When children display similar behaviors but do not meet the criteria for autistic disorder, they may receive a diagnosis of Pervasive Developmental Disorder-NOS (PDD not otherwise specified).

    Problems in social relatedness and communication.
    (Difficulty in mixing with other children; prefers to be alone; aloof manner; difficulty in expressing needs; uses gestures or pointing instead of words ).
    Abnormal responses to one or a combination of senses; such as sight, hearing, touch, balance, smell, taste, reaction to pain.
    Sustained odd play.
    Uneven gross/ fine motor skills.
    Not responsive to verbal cues, acts as deaf.
    Little or no eye contact.
    Insistence on sameness; resist changes in routine.
    Noticeable physical over activity or extreme under activity.
    Tantrums; displays extreme distress for no apparent reason.
    Speech and language absence or delays. Inappropriate laughing and giggling. Echolalia (repeating words or phrases in place of normal language).
    Abnormal ways of relating to people, objects and events. (Inappropriate attachment to objects; don’t seek cuddling )
    Spins objects.

    An aspect of language that tends to be disturbed in autistic people has to do with knowing how to use language appropriately and in context. That includes knowing how to hold a conversation, thinking about what the other person in a conversation understands and believes, and tuning in to the meta – linguistic signals of the other person, such as facial expression, tone of voice and body language. It is important to remember that communication is as much nonverbal as it is verbal, and autistic people have great difficulty understanding nonverbal language.

    The following is from the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM IV):

    A. A total of six (or more) items from (1), (2), and (3), with at
    least two from (1), and one each from (2) and (3)
    (1) qualitative impairment in social interaction, as manifested by at least two of the following:
    a) marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction
    b) failure to develop peer relationships appropriate to developmental level
    c) a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people, (e.g., by a lack of showing, bringing, or pointing out objects of interest to other people)
    d) lack of social or emotional reciprocity ( note: in the description, it gives the following as examples: not actively
    participating in simple social play or games, preferring solitary activities, or involving others in activities only as tools or “mechanical” aids )
    (2) qualitative impairments in communication as manifested by at least one of the following:
    a) delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)
    b) in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others
    c) stereotyped and repetitive use of language or idiosyncratic language
    d) lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level
    (3) restricted repetitive and stereotyped patterns of behavior, interests and activities, as manifested by at least two of the following:
    a) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
    b) apparently inflexible adherence to specific, nonfunctional routines or rituals
    c) stereotyped and repetitive motor mannerisms (e.g hand or finger flapping or twisting, or complex whole body movements)
    d) persistent preoccupation with parts of objects
    B. Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years:
    (1) social interaction
    (2) language as used in social communication
    (3) symbolic or imaginative play
    C. The disturbance is not better accounted for by Rett’s Disorder or Childhood Disintegrative Disorder

    Diagnosing and Evaluating Autism
    Autism and related disabilities, such as PDD-NOS (Pervasive Developmental Disorder – Not Otherwise Specified), and Asperger’s Syndrome are difficult to diagnose, especially in young children where speech and reasoning skills are still developing.
    It is essential that the process of diagnosing Autism; related disabilities include the assessment and evaluation of a child’s development, communication, and social skills.
    Evaluation and assessment are ongoing processes. Once a diagnosis has been reached, this process should be repeated periodically.
    We included brief descriptions of some medical tests and evaluations that may be ordered for children suspected of having autism or a related disability.

    Medical Tests
    The following medical tests may help with diagnosis and possibly suggest changes in the intervention or treatment strategy.

    Hearing: Various tests such as an Audio gram and Typanogram can indicate whether a child has a hearing impairment. Audiologists, or hearing specialists, have methods to test the hearing of any individual by measuring responses such as turning their head, blinking, or staring when a sound is presented.
    Electroencephalogram (EEG): An EEG measures brain waves that can show seizure disorders. In addition, an EEG may indicate tumors or other brain abnormalities. An electroencephalogram (EEG) is a recording which shows the variations in electrical potentials at a number of scalp sites.
    Inside the brain, neurons produce their own electrical fields. The electric fields are measured in units of micro volts. It is thought that an unhealthy brain will have large changes in the electrical potential compared to the potentials produced by a healthy brain.
    However, in order to observe an unhealthy brain it must be compared to the same brain when it was healthy. So, for example, to measure the difference between a brain undergoing a seizure, the EEG must last long enough for seizure to occur. Often a video EEG is done over a period of a day or a week.
    This form of measuring brain activity is noninvasive (doesn’t require any surgical cuts) and it is relatively inexpensive. This method gives numerical results. The patterns of the numbers are then used to determine whether or not the brain is healthy. The results can also be used to determine which section of the brain is causing problems. Additional tests will likely be needed to make an accurate diagnosis of these conditions.
    Metabolic Screening: Blood and urine lab tests measure how a child metabolizes food and its impact on growth and development. Some Autism spectrum disorders can be treated with special diets.
    Magnetic Resonance Imaging (MRI): An MRI involves using magnetic sensing equipment to create an image of the brain in extremely fine detail. Sometimes children are sedated in order to complete the MRI.
    Computer Assisted Axial Tomography (CAT SCAN): An X-Ray tube rotates around the child taking thousands of exposures that are sent to a computer where the X-rayed section of the body is reconstructed in great detail. CAT Scans are helpful in diagnosing structural problems with the brain.
    Genetic Testing: Blood tests look for abnormalities in the genes which could cause a developmental disability.

    Therapy Evaluations
    Many children with Autism and related disabilities require some form of special therapy. Evaluation can help determine the potential benefits of therapy.

    Speech – Language Therapy: It is recognized that autistic children have difficulties with language, but it is clear that traditional approaches emphasizing mastery of the formal properties of language are largely inappropriate: training children to speak is not going to bring about a transformation of their behavior. The autistic child needs to learn not so much how to speak as how to use language socially to communicate. Some autistic children are nonverbal, and some who are verbal may also have deficiencies or are unable to use language in a meaningful way.
    A Speech Pathologist who specializes in the diagnosis and treatment of language and speech disorders, can help a child learn how to effectively communicate.
    Occupational Therapy: Commonly focuses on improving fine motor skills, such as brushing teeth, feeding, and writing, or sensory motor skills that include balance (Vestibular System), awareness of body position (Proprioceptive System), and touch (Tactile System). After a therapist identifies a specific problem, therapy may include sensory integration activities such as: massage, firm touch, ex..
    Physical Therapy: Specializes in developing strength, coordination and movement. Therapists work on improving gross motor skills. This therapy is concerned with improving function of the body’s larger muscles through physical activities including exercise.

    Direct Observation
    Direct observation, interaction, and interviews assessments: Information about a child’s emotional, social, communication, and cognitive abilities is gathered through child directed interactions, observations in various situations, and interviews of parents and care givers. Parents and family members should be actively involved throughout these assessments. What actually occurs during a specific assessment depends on what information parents and evaluators want to know.
    Functional assessments: Aim to discover why a challenging behavior (such as head banging) is occurring. Based on the premise that challenging behaviors are a way of communicating, functional assessment involves interviews, direct observations, and interactions to determine what a child with autism or a related disability is trying to communicate through their behavior.
    Once the purpose of the challenging behavior is determined, an alternative, more acceptable means for achieving that purpose can be developed. This helps eliminate the challenging behavior.
    Play based assessments: Involve adult observation in structured and unstructured play situations that provide information about a child’s social, emotional, cognitive, and communication development. By determining the child’s learning style and interaction pattern through play based assessments, an individualized treatment plan can be developed.

    Standardized instruments

    Standardized instruments are formal methods used to determine different levels of cognitive development.
    Rating Scales ; Developmental Inventories: Vineland Adaptive Behavior Scales and Childhood Autism Rating Scale are examples of standardized tests that measure a child’s general developmental skills, including socialization skills and coping skills. Scores are based on parent interviews and evaluator observations.
    Intelligence Tests (IQ): Stanford-Binet Intelligence Scale and other intelligence tests attempt to determine an individual’s intelligence based on standardized criteria. The results of educational tests are often provided in composite scores.
    On the Wechsler Intelligence Scale for Children , (WISC-III), three scores are usually provided: Verbal IQ (VIQ), Performance IQ (PIQ), and a Full Scale IQ (FSIQ). Each of these tests provides a composite score. Both the Verbal and Performance IQ scores are composites of five different sub tests. Intelligence Tests (IQ) do not necessarily measure an autistic child true abilities and unique potential to develop.

  2. Such a common story, that’s the sad thing. Yet it seems like the only significance in the world if it’s happening to you. I feel your pain. I hope your son is improving. I haven’t read that far, yet. 🙂 Hang in there.

  3. Do you think the fact that you are so grossly obese might have contributed to the problem?

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