Monthly Archives: February 2009

He’s not looking at me. What happened?

benreecebubble1Right after Ben’s first birthday, around the first of May, we baby-sat his cousin, our nephew, for a week while my sister and her husband took a  vacation. Ben and his cousin are one month apart and we saw it as an opportunity to have the two, one year olds, spend time together and perhaps build a bond between them that would last a lifetime. Ben didn’t like it. His cousin didn’t like it either, he wanted mommy and daddy, not us. Almost immediately Ben became irritated at his cousin’s tearful cries for attention. His irritation soon became violent. He smacked his cousin every chance he got. We responded with putting Ben in time out for the first time in his young life. Needless to say Ben hated it but we figured he can’t be allowed to act this way, even though I mostly played it off as boys will be boys.

Over the next few weeks at home Ben kept up with his violent behavior, along with frequent temper tantrums with one or two lasting up to an hour. This was definitely out of character and extremely frustrating. We assumed that Ben was still angry about his cousin and having to share our attention. I assumed it was normal. What did I know?

More time outs, more frustrations.

Ben escalated his violence by biting his mom in anger. Again something we have yet to see in the first 12 months.

On one occasion Ben bit his mother hard, made her cry, it hurt bad, so I immediately yanked him up and took him into time out. Now, since Ben is just a year old at this point, time out consisted of changing rooms, a quite environment, sitting in a chair with him in my lap and holding him until he settled down. I usually kept quiet, sort of ignoring him until he settled down. Once he settled down I would love up on him rewarding him for calming down but also explaining to him what he did wrong.

But this time, when he bit his mother, I got pretty angry, I’d had it and when I got him into time out, with him crying and trying to get loose, I sort of yelled at him to stop. Well I admit it, I did yell, I was furious that his behavior was becoming worse and I wanted it to stop. He didn’t, it got worse, he fought and screamed so much he broke a sweat and it continued for another 15-20 minutes as I held him silently but firmly. I tried to get his attention, tried to get him to look at me, to look into my eyes, and he wouldn’t. He just fought and had he had known the words I’m sure he would have been cussing up a storm.

“Look at me!” I said hoping to end the tantrum, turning him so his face was in front of mine, but his eyes stared off to the side. “Look at me Ben!” and he refused.

This sent a chill up my spine. Not that I knew anything about autism, it was because this just wasn’t like him. I remembered noticing his lack of eye contact when his cousin was with us for the week. I thought that was just him having his feelings hurt and being jealous. But this was different, I was suddenly aware that I was attempting to break him, break his will and instead it broke me. I sobbed uncontrollably, something is wrong, this isn’t worth it, just let him bite, do anything he wants. I left the room, I left him to work it out on his own. I left him to run away. A little later he came into my office where I was hiding my shame, my self doubt, my heartache. He came in and climbed up into my lap and loved me. I cried so hard it made my wife cry. In the 9 years we have been together she has only seen me in this state 3 times, once for reasons I don’t want you to know about, this time when I had the come to Jesus with myself and the last time months later when I knew Ben was autistic… or something.

After that night of biting and epiphany, I did notice often, all the time in fact, that Ben was refusing to make eye contact. Every night when we played right before bed, I would hold him so he couldn’t help but look at me and he wouldn’t. It got so it was kinda funny, his mom and I would joke that he was just like our cat Winnie, who also wouldn’t look us in the eye. Little did we know how serious it was and how long it would be before he would ever do it again.

This is an account of Ben’s regression into the autism spectrum.

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HepB Vaccine

hepatitisshot Prior to Ben being born his mom spent a lot of time researching how to deliver and raise a healthy baby. One of her concerns was the Hepatitis B vaccine being administered so early. She expressed those concerns with the doctor and was assured that the shot could be delayed with no problem.

When Ben was born we were all in heaven, laughing, crying, and attending to Erica who had just given a problem free, delivery to a healthy young boy. The nurses took Ben aside to an area in the room equipped to washing him down, suck snot out, weigh, measure and without our knowledge, inject a Hepatitis B vaccine into our perfectly pure newborn child.

I saw this out of the corner of my eye, needle poised ready to jab and I shouted, on camera, to STOP!

The nurse put down the needle, and I went over there and told her what arrangements we had make with the doctor prior to Ben’s birth.

When we discovered that Ben had autism we requested copies of his records with the pediatrician. In Ben’s records we found a note saying that Ben received his HepB vaccine the day he was born.

bendocrecord-hepb

Hard to believe that we never knew. We said no, I yelled no, and made a big stink about it on the most joyous occasion of my life. And yet according to documental evidence, Ben received the vaccine anyway.

Upon further review of his records we find that he also received another HepB vaccine on June 23, 2006, This according to his official NC Department of Health and Human Services Lifetime Immunization Record.

ben-blur-vaccine

benhepb623

This was the first betrayal of many by those trusted with the health and well-being of our son.


The reason to jab day old babies with the Hepatitis B vaccine, according to the CDC:

“Except for infants born to mothers with this infection, children are not at great risk of developing hepatitis B, but health-care workers, homosexuals, and intravenous drug users are. Attempts to vaccinate adults have been largely unsuccessful, however. It’s easier to reach children because school enrollment requires immunization.

Therefore, for lifelong protection, CDC has recommended that all infants be vaccinated before 15 months of age in three doses.”
http://www.fda.gov/fdac/reprints/vaccine.html

FROM THE CDC

What are the risks from hepatitis B vaccine?

A vaccine, like any medicine, is capable of causing serious problems, such as severe allergic reactions. The risk of hepatitis B vaccine causing serious harm, or death, is extremely small.

Getting hepatitis B vaccine is much safer than getting hepatitis B disease.

Most people who get hepatitis B vaccine do not have any problems with it.

Mild problems

  • soreness where the shot was given, lasting a day or two (up to 1 out of 11 children and adolescents, and about 1 out of 4 adults)
  • mild to moderate fever (up to 1 out of 14 children and adolescents and 1 out of 100 adults) Why are adults able to handle it better?

Severe problems

  • serious allergic reaction (very rare)

http://www.cdc.gov/vaccines/vac-gen/side-effects.htm#hepb

Some people should not get hepatitis B vaccine or should wait.

People should not get hepatitis B vaccine if they have ever had a life-threatening allergic reaction to baker’s yeast (the kind used for making bread) or to a previous dose of hepatitis B vaccine. How does someone know what allergies an hour old infant has prior to the shot?

People who are moderately or severely ill at the time the shot is scheduled should usually wait until they recover before getting hepatitis B vaccine.

http://www.cdc.gov/vaccines/vpd-vac/should-not-vacc.htm#hepb

Ben at 3 months of age

Ben at 10 months

Roseola fever

ben011707 Right after Christmas Ben started feeling punk. The in-laws were in town, the house was still full of wrapping paper and toys that go beep, whirrrrr and zoink. But Ben had a fever, and the fever kept getting worse. Since it was the holidays the pediatrician’s office was closed and the calls were forwarded to the UNC hospital phone bank 30 miles away in Chapel Hill. The dial-a-nurse kept reassuring us every time we called that Ben would be alright, that children can endure high fevers and as long as he was drinking liquids and comfortable a 104 fever is nothing to be concerned about. She also said not to worry unless his fever gets over 105. When it got to be 105, we called again and again we were told not to worry, kids can take it.

On the evening of the second I was with my in-laws in the living room watching a game on the television, Ben’s mom traded places with me earlier to lay with Ben keeping an eye on him. It wasn’t long before I heard my name being called, I ran into the room as Ben was being lowered into a tub of water, “His fever is 107, we have to get him the hospital.” So we dunked Ben in the tub, dosed him once again with Motrin, dressed him in a tshirt and ran out of the house to the hospital. I dialed 911 on the way alerting them to the situation and called the doctor.

There were no rooms available in the emergency room, a nurse fumbled with the clip on his finger as Ben lay screaming on the gurney in the hallway. This was not turning out as I had hoped but Ben’s fever had dropped to 106 and was continuing to fall quickly for the next 20 minutes. No call back from the doctor, no doctor coming into the ER so I get back on the phone and start yelling. I believe I said something like, “If my son’s doctor does not call back in 10 minutes and something happens to my son, tell him I will find him and hurt him.”

I immediately got a call back from the doctor, “Get him out of the ER, it will only make him sicker, bring him to my office.” We packed him up and headed across the street to the doctor’s office. Ben’s fever had broken and was back down to 104, we were relieved.

The doctors notes said the fever was most likely viral and appeared “tired and sleepy”. You betcha!

The next day Ben went back to the doctor’s office, still some concern about his well-being. His blood work showed a WBC count of 3,000, normal range is from 6,000-15,000. His Red cell distribution width (RDW) was high at a 14.6, normal range is from 11.5 – 14.5 and his Platelet count (PLT) was low at 131 when the normal range is 150-350. If Ben was a Chemo patient the levels might not cause alarm. We were sent back home with a pat on the head for being such cautious parents.

Now it is important to remember these test levels because when I get around to talking about April 18, 2007, you’ll need to remember this, the doctor didn’t.

The next evening the febrile fevers finally went away, and the following day Ben developed a rash on the trunk of his body. This is what the doctor diagnosed as Roseola. A few months later the fevers and rash returned and over the phone the doctor diagnosed it as a recurrence of Roseola.

Roseola is a generally mild infection that usually affects children by age 2. It occasionally affects adults. Roseola is extremely common — so common that most children have been infected with roseola by the time they enter kindergarten.

Two common strains of the herpes virus cause roseola. Roseolovirus refers to both Human Herpesvirus Six and Seven, both members of the betaherpesviridae subfamily of herpesvirus.The condition typically causes several days of fever, followed by a rash.

Some children develop only a very mild case of roseola and never show any clear indication of illness, while others experience the full range of symptoms.

Roseola typically isn’t serious. Rarely, complications from a very high fever can result. Treatment of roseola includes bed rest, fluids and medications to reduce fever.

April 18, 2007

ben-vaccine

Ben had already experienced the jabs prior to ones he received on April 18th. He had quite a few, as do most children by the time they are a year old.

We had just finished his birthday celebration and I had traveled out of town on business when Ben and his mom went in for the shots.

Erica and I had talked about this day, I wouldn’t say we were scared, more like we were cautious. We had no idea about autism, but we knew vaccines were potentially dangerous to some children. Every parent hears horror stories and we had heard enough to be cautious. Erica went in with Ben, asked to speak to the doctor and the doctor gave her a good five minutes of his time to comfort all fears and anxieties. His words soothed Erica’s concerns and she signed the release allowing Ben to be injected with an MMRV, HepA, HIB and Prevnar, seven total vaccines.

They took some of Ben’s blood and his Hgb was at 13.3, (normal 10.5 – 13.0) his WBC was 6.2 (normal 6 – 15), his HCT was 40.1 (normal is 33-39). It looked to them like Ben was healthy enough to deal with the viruses his body will be required to fight with in order to build a immunity. Otherwise why would they have injected him?

Of course Ben screamed, he cried, he cried so much he vomited, he was upset for hours. Erica recalls this part of it in her journal.

Daddy left for a job and to help grandmammy and papa move into their house. You had just gotten your shots and we were on the floor in your bedroom and you were crying, wouldn’t stop, you’d been that way most of the time near the end of our day.   just picked you up and held you sitting on the floor and I asked you what’s wrong, still breathing hard, sucking your thumb, tears down your face. I said, “what’s wrong, use your words, tell me what”  You took your thumb out and pulled backwards looking at me you said, “me mesee daddy” put your thumb back in your mouth and placed your head down on my chest. You wanted to see daddy. I showed you his picture in the hallway and called him. You seemed better after that so we went to dinner. You are fabulous.

“Me Mesee daddy”, the last sentence he would say for nearly a year.

Things sort of started rolling downhill from there, little by little Mister Ben-gee-man started eroding into a different little boy. A week or so after this we babysat my nephew who is a month older than Ben. Ben immediately started acting out in violent and aggressive ways we hadn’t seen before.

It took 5 months before the seriousness of his developmental backslide became important enough to talk to the doctor about it. We made all kinds of excuses and just thought he would work out of it on his own.  When we did go in the doctors basically said he seemed to them a healthy little boy. They viewed my wife a little differently, “very preoccupied with Ben’s behavior” ,”mother overly concerned about his speech development” ,”concerned he is not responding to his name but upon evaluation he seems to hear quite normally”, “difficult to address all of mom’s concerns”, “appears to exhibit age appropriate behavior, a little on the hyperactive side”, ” prescribed amoxicillin”

Also in Ben’s chart is these notes from the doctor on Ben’s 9 month well visit:

Development: feeds self, sits without support, crawls, pincer grasps, vision/hearing normal per parents, knows name, gets to sitting, laughs, imitates speech and “Lots of words, “L” sounds, names shapes and colors!”

On March 6, 2007 (11 months) Erica made a note in Ben’s baby journal that said:

Points and says, “I see it” a lot.

Most of those observations of Ben’s development are true today, 24 months later, but not 6, 10 or 12 months later. Ben has just begun pointing once again and he still can’t say the “L” sound also he has just started imitating, in a call and response kind of way, once again.

In this video Ben is imitating Erica. He was 10 months old, 26 months later he can’t do it. Or won’t. Who knows.

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.
http://www.youtube.com/watch?v=BNwHPZOmlNc

By 10 months he had perfected it.
http://www.youtube.com/watch?v=zwLwkKSuaLg

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