He’s not looking at me. What happened?

Right 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.

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 29, 2007 on set with Ben

Diagnosis: Borderline Autism

On November 25, 2007, I sent out an SOS email to just about anybody that was located within 60 miles and was a professional organization with a title that began or ended with the word autism. I got several responses. Now remember I didn’t know squat about anything when it comes to autism, but I was extremely scared and anxious to get help right away. My son had been slipping away  and I was just becoming aware of it.

I got several prompt replies, all of them extremely helpful. I sensed others had been down this road prior to my situation and these professionals were used to us desperate parents.

One of the first things that happened was we were put into contact with the local Children’s Developmental Services Agency, a division of Public Health within the North Carolina Department of Health and Human Services. On December 6th Ben was seen by a specialist. Ben was 19 months and 19 days old. He was evaluated and scored at 21 months for Gross Motor Skills, 18 months for Fine Motor, 18 months for Cognitive, 8 months for Language, 21 months for Self Help/Adaptiveand 12 months at Socio-Emotional (ELAP) The diagnosis was “Specified Delays in Development” 315.8

On January 24, 2008 Ben had another evaluation scheduled by the Early Intervention Service Coordinator.  This woman has become our life line. We trust her, we welcome any and all suggestions and have found her to be extremely straight forward and to the point. When she suggested Ben meet with a pediatrician and a psychologist we agreed and on January 24th Ben met with them and was put on the edge of the spectrum.

I bet I double guessed these two experienced professionals all the way home that day. How could he be on the spectrum? I mean come on, sure Ben didn’t jump up in the doctors laps and say “Hi!” but he acted kinda normal, and was well-behaved… sort of.

The doctors, of course, saw it differently.

“Ben is moderately willing to participate with the evaluator”

“Ben engaged in very limited periods of reciprocal interaction”

“Few intelligible words were vocalized”

“activity level was above normal”

“stuck thumb in his mouth and had a fixed gaze”

“lack of visual and listening response”

“Ben threw objects during the evaluation”

“frequently would not respond to staff requests for change in behavior or attention”

“behavior was predominately self directed”

“demonstrated little interactive play with this evaluator”

“exhibited some stereotypical autistic spectrum behaviors in this setting”

So I fought it for a day or two, maybe a week or two, until I could swallow the bitter pill. Ben was on the border, his CARS (Childhood Autism Rating Scale) score was a 30. Scores range from 15-60. Ben’s 30 is right on the threshold, squarely on the line between non-autism and the lowest bound of the mild/moderately autistic range.

Now some might say, “hey that’s good news, it could be worse” and of course it could be worse but that’s like saying it’s a great bucket except for the leak. But I understand, what I don’t understand is how any of this will work out in the long run.  If Ben was a movie it would be missing a scene.  You might be able to follow the story, even enjoy the movie but you’ll never know how that missing scene would have affected the intended experience. Sure, God ‘s plan, fate and all that, the intended experience is the life with the missing scene, get over it, there is no perfection and everyone has a flaw, this is Ben’s. We skip a scene, a chapter, a verse, in his developmental process and we will never know what’s permanent and what’s temporary, a head full of what if’s will plague us/me forever. What if Ben hadn’t suffered this injury, this problem, this set back, what if Ben wasn’t autistic, what if he was “normal?”

Of course no one will ever know, except perhaps Ben, all of us sense some unrecognized potential hidden within us, at least I do, I could have been … if it wasn’t for… if I would have just had the….blah, blah, blah, I dunno maybe it’s just me. But this does bring up a question, if, and I say if with fingers crossed, if Ben recovers and by the time he enters first grade and is at age level in all areas, do we tell him about all this stuff later on? Do we tell him he used to be developmentally delayed and was at one time diagnosed with autism?

Do we plant the seed in his normal brain that he used to be “retarded?”

Do we?