Sam’s World ~ Our Story

Our second child was only three months old when I found out I was pregnant with Sam. I was incredulous and everyone else around us was in shock and not shy about sharing their feelings on the matter. My ob/gyn and the pediatrician  both freaked and began to tell to tell me all the things I couldn’t do like grow a baby and nurse one at the same time. Apparently I was the first woman in the history of the world to get pregnant so quickly after having a baby. (That’s total sarcasm. I knew a woman who had a baby in January and another in December of the same year.) It happens and while I am certainly not advocating for a total lack of wisdom and judgement on the matter, I realized that I could freak out like everyone else and have a baby or I could accept the blessing of life and have another baby. Notice that either way there was another baby coming.

Do I think two pregnancies that close together caused Sam’s autism? It’s possible I guess that I didn’t take in enough vitamins or something. Rob was restoring a historic home and it’s possible there was exposure to lead. Any of it’s possible. But we didn’t spend a lot of time trying to figure out the “how” or “why”…we have never looked for a cure so we have never felt a great need to know the cause. Like I mentioned in my previous post, we believe Sam is uniquely made by a loving Father regardless of the means He chose to use, if any, to form our son.

Sam is our only son. He is also the only one of my labors that started on it’s own. As far as labors go it was pretty awesome…it progressed through out the day and we were only at the hospital one hour before he was born. He was also my first natural delivery. We were in the hospital less than 24 hours before they released us to go home.

In hindsight we think there were some indicators from the very beginning that something was not quite right. He was pretty quiet even right after his birth once the initial cry happened. His eye were wide open and for all the world he seemed as if he was looking around although clearly there wasn’t much focus. As the weeks passed he proved to be a very unfussy baby. We’ve since learned that on one end of the spectrum you have extremely passive babies and extremely fussy ones on the other end. If it’s a scale of one to ten, with one being passive, Sam was probably around a three or four. He nursed well, slept through the night well and generally just seemed like a laid back sort of kid.

As weeks turned into months we noticed that he didn’t seem disturbed by or notice loud sounds. As a matter of fact our first thought was that he had a hearing problem. I could, and did, stand behind him and bang a pot loudly and he never even turned around or was startled. Just kept playing with whatever toy he had. Sometime later Rob was sitting across the room from him and he whispered the theme song from Barney which was Sam’s favorite. That little boy’s head whipped around so fast to stare at his Daddy and all of a sudden we knew his hearing wasn’t the problem.

We were also beginning to notice some other things. He had an amazingly deep concentration and that focus was pretty strong when something caught his attention. Like most kids he would crawl around and play with the cabinet doors. Only Sam was intensely interested in the hinges; he would sit and move the door ever so slightly and his head would twist and turn to see both the outside and inside of the hinges move.

He was fascinated by weather reports. No matter where he was in the house if he heard one come on the television he would stop whatever he was doing and come sit as close as we would let him to watch the maps. (Funny side story, he would also literally bump his head trying to look down the inside of the tv screen to see where credits at the end of shows were coming from 🙂

Eye contact, usually one of the biggest indicators of autism, was also missing. We could get him to look at us but it took a lot of work to make it happen and it didn’t last for long. Although we could get him to laugh he didn’t really seem to be developing verbally either. All of these things we noticed but didn’t discuss too much as other milestones were happening on target like sitting up, crawling, and walking.

When Sam was nine months old I got pregnant again. The responses were pretty much the same and if I had five dollars for every time someone asked me if I knew what caused that I could probably take a really nice tropical vacation. It was in the waiting room for one of my prenatal appointments that I first realized that Sam’s quirks may be something more. I picked up a magazine to thumb through and got caught up in reading some family’s journey through autism. When they called my name I told the nurse I had to have that magazine;  I’m sure she probably thought it was some crazy pregnancy hormone fit I was having but I knew that story needed to come home with me. Sam had never regressed, which is rather common in autistic children, but there were so many similarities between the young man in the story and Sam that I knew this would mean something. Rob read the article, handed it back to me and said, “Get on the internet. Research everything you can find out about autism.”

For weeks that’s what I did. Anything that related to Sam I wrote down in a notebook. Twelve years ago we were on just the cusp of public discourse on autism but there was still a ton of information. It was a maze of one thing that led to another but I waded through and finally Rob and I were convinced. Our son had autism.

I’m not really sure what our pediatrician thought as she listened to us in her exam room as we told her that we thought Sam was autistic. To say that’s not the norm is an understatement. Usually parents are in denial and the doctors have to work at convincing them otherwise. She heard us though, and set an appointment up for us with the Developmental Early Intervention clinic.

There we met with several people. A developmental psychologist, a behavioral specialist, and an occupational therapist all sat in a little room and watched Sam. They had him do a few things like walk up a set of stairs and do other activities to assess his gross and fine motor skills. Then they left us alone while they discussed everything and after a bit came back to talk with us.

I remember Rob clearly stating that we just wanted to know how to reach our son and help him relate to the world around him. The development psychologist literally cried. He said that not only was our view so different from what they normally heard, but that it was also extremely rare for the father to even be present at the evaluation.

Basically, Sam was diagnosed with PDD NOS. Pervasive Development Disorder Not Otherwise Specified. It means that while he displays a cluster of autistic characteristics he doesn’t fit the profile for any of the spectrum disorders.

Not so helpful sounding, huh? But it was a place for us to start and it enabled us to receive about a year of speech and occupational therapy.  Next week I’ll share a little bit about what treatments and therapies we’ve used over the years, what worked for us and what didn’t.

I know this has been a long post and if you’ve managed to stick it out this far here’s the reward. Sam’s autism shows up in a variety of ways but mostly in language and how he processes it. This makes for some rather funny things he’s said. For instance we all have used the phrase “a little bit” with our kids. To Sam, the opposite of that must be “a big a bit”…as in “I’d like a big a bit of m&m’s, Mom.”

A favorite Sam story with most of our friends involves tombstones. The first time he mentioned them he was riding in the car with my husband and asked him about the “goner labels”.

He has a wit about him that can be so very funny. My favorite is the time he said, “Mom, playing the kazoo doesn’t make me special. It just makes me loud.”

Photo Story Friday

Paula’s No Rules Blog Party

Here’s the link to the first post in the Sam’s World series.

14 thoughts on “Sam’s World ~ Our Story

  1. Thank you so much for sharing this! I love how you and Rob have approached this! Sam seems like such a bright spot in this world and to those whose lives he touches! Your stories bring a smile to my face and make me laugh! I'm sure life is not always easy, but what a joy of a boy!!! :)p.s. Love the way your photos seem to capture his personality so well! 🙂


  2. I love the pictures of Sam. Thank you for sharing your journey with us. I am learning a lot… and it's a good thing.


  3. You are truly blessed to have such a special child! God's wisdom is all around us. We just need to be still. God gives these special blessings to parents who need and will understand them. Bless you all in your \”travels\” with this. I am a friend of Edina Mann and she forwarded your blog. I will be reading more.Thank you


  4. I absolutely love the photo collages! I can also relate to the witty word usage. My son does that – only now that he is 22, he understands that his language usage is unique and uses it on purpose to make people laugh. I look forward to reading more!


  5. Thanks so much for bearing your heart with us and sharing from your son's journey. I believe this is only my first (or second) time visiting your blog, but I was instantly engaged by it.My, your son looks like such a delight to be around! And by the way, about the pregnancies being so close together: that has happened sooo many times throughout history. I have met neighbours, friends, you name it…that had surprise close pregnancies (with of course critics waiting in the wings) but it can always turn out to be such a blessing (if we embrace it, which you obviously have done)Looking forward to future posts 🙂


  6. Thank you for sharing Sam's story. I'm so thankful that Sam has two parents like you. Your statement in the beginning that \”we have never looked for a cure so we have never felt a great need to know a cause\” speaks volumes about your trust in His Creator. Though I can only imagine the challenges that come with his diagnosis, I mostly hear how much your heart loves your unique, precious son. Love the pictures!


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