What were some of the first signs that alerted us that something was going wrong with our son’s health?
Well there were a few things, some unique to our situation, and some that I hear are quite common in the autism community. I share this story in hopes of connecting with others that might be going through something similar. I don’t want anyone to think our specific experience or symptoms automatically means there is something wrong with a child you know who might exhibit similar behaviors. It is simply our story, and only a part of it really, because it is impossible to remember every single detail. Thus, here is a general overview of how we knew something was wrong.
My son was born a week early via C-section after a failed induction. At the time of his birth, he was in the 75th percentile for height and the 50th percentile for weight. However that started to change soon after we brought him home from the hospital. He had a very tough time latching on while breastfeeding and we were supplementing with formula from the very beginning, after the nurses at the hospital said his blood sugar was too low. We only made it to six weeks before calling quits with the breastfeeding and moving straight onto formula, which he still struggled to drink (no matter what formula we tried). Oh the things I would have done differently looking back now!
Bean also had a major startle reflex that took months to go away. We had to keep him swaddled for almost six months to get him to calm down. He would also do this weird twitching thing with his eyes and body while falling asleep. And when he first woke from his naps, his lower lip would tremble oddly. The doctor kept assuring me it was normal, but I never quite felt that way.
By the time my son was six months old, he was still having a lot of trouble consuming his milk, and was never able to drink more than four ounces at a time. He would choke, sputter, squirm and scream. He was constantly and painfully constipated. I was told he had reflux, then colic. At nine months of age, I insisted that the pediatrician refer me to a pediatric gastroenterologist. They ran a bunch of tests but could not see a problem. They told me, as did the pediatrician, that he was probably “just not a very thirsty baby.” At this point, Bean had fallen into the 5th percentile for weight and the 20th percentile for height. My husband and I are not big people, but we knew this just seemed strange. We were happy when we were able to start solid foods with Bean, and he seemed to eat those up just fine. But he was still so small. A couple of battles with thrush and ear infections followed and I medicated him accordingly.
How was he in the communication department? Well, as a first time mom, I was very eager for Bean to meet his milestones, and was on the lookout constantly to make sure he was doing so. Oddly enough, for ten years prior to having my son, I was a regular babysitter for a child with autism and was very aware of the signs. I wanted to make sure I saw none of those in my own child. So when Bean was two or three weeks old, I became a little concerned as to whether he was looking at our faces enough. At that point he wasn’t but he started to do so more in the next few weeks. I figured he still had blurry vision and perhaps it was just too early. But I was definitely worried and on google a lot making sure that all was well. It was just something in my gut that felt he was a bit checked out. But he was young and so it was easy to chalk it up to that.
Then, at six weeks of age, we got the smile from him that we were looking for, right on time. That made me happy. The cooing also started around this age, and when I look back at videos, they confirm that he was most definitely looking at us and trying to engage in back and forth communication. He was a very intense baby, but a seemingly happy one nonetheless (when he wasn’t being asked to drink his milk, that is).
At around six months of age, I saw my first big sign that something was wrong. Bean had just gotten his shots, and I was told to bring him home and to give him tylenol right away to keep any possible fever at bay. The next day, we went to a birthday party. I was excited to show my husband how excited Bean gets when he’s on the swings. We put him in the bucket swing and nothing. It was like he was in a fog. He just sat there with no expression on his face, just totally over the whole thing.
After that, those moments of fogginess seemed to take over more and more. However, Bean was still present most times. He was very into studying everything and you could get nothing past him. He loved being outdoors and looking at the trees and the leaves fluttering in the wind. It was so easy to get him to smile for the camera. He loved Gymboree class.
But there was a nagging feeling. While engaged in our world, Bean wasn’t learning to imitate and wasn’t often looking at us for guidance or instruction. His babbling was a few months behind and it wasn’t progressing past what a six month old would do. He started to become more silent except for grunts. He never waved or pointed. It was like he wanted to be part of our world, but didn’t seem to know how the give-and-take of communication worked. He also did not show much interest in finding out. While his peers in Gymboree were doing hand movements along with the toddler songs, he would look away or wander off. While I could eek out moments where we would have a natural communicative exchange, like a shared smile or a small amount of joint attention, they were becoming fewer and farther between. Bean remained affectionate, but as I mentioned, a bit checked out.
At 12 months of age, Bean started to track objects back and forth repetitively, especially wheels. He also began an obsessive habit of putting items behind his back and then turning around to look for them. He would do this over and over again without end. These behaviors increased as time went on.
Around this time, I thought we had a breakthrough when Bean actually imitated me saying “Mama” and “Dada” in a monster voice. He thought it was hysterical and I thought, “Yes! This is the beginning of real communication!” Well, those feelings were short-lived because a few weeks later he lost all ability to even do that.
Bean received shots again at 14 months of age, and by 15 months I brought him back to the pediatrician and told them there was something wrong. Bean was not progressing, he actually seemed to be going backwards. I asked them why he never pointed, never waved. I told them he would sometimes thrust his fist out in the general direction of something he might want and grunt, but rarely looked at us to see if we heard him. They dismissed my fears, and told me “We know a couple of children who never pointed and they are normal”, or “He seems pretty aware when we walk into the room,” and my favorite, “We can just tell he doesn’t have autism.” I wanted to believe them.
Delayed speech is one thing, but lack of gestures and joint attention, poor weight gain and eating issues, another. All of those things individually don’t equal a developmental disorder. Put everything together, and, call me crazy, but I think it warrants further evaluation.
When Bean was sixteen months old, we went on a family vacation. One night, while we were away, it just hit me. I looked up autism and it was all right there, spelled out for me. My husband wasn’t sure quite yet, but I was. I spent the rest of that vacation on the phone trying to secure an appointment with a developmental pediatrician. Our regular pediatrician said, “Well go ahead and have him evaluated if it makes you feel better.” But you could tell he didn’t think it was necessary. I also made an appointment with Early Intervention to come out and evaluate our son. My hands were literally shaking while making the phone calls, but I didn’t want to wait any longer. It really felt like time was slipping away.
Once back at home, Early Intervention was able to come out fairly quickly to observe our son. They told me he was deficient in speech, which I knew, because he had no speech at all at sixteen months of age. But when they said he was also quite deficient in social skills, I knew my gut was right on. Our visit to the developmental pediatrician confirmed this. After two hours with our son, the specialist told us that, while he was hesitant to give our son a diagnosis so early, we needed to get him therapy immediately.
That’s what led me to my darkest hours holed up in the bedroom at my in-laws house, grieving and mourning the loss of my child. Or at least that is what I thought at the time. As I’ve written here, I was eventually able to pull myself together and move on to get Bean the help he needed, but only after many dark nights and many hours of research, therapy training, and talks with other mothers going through the same thing.
When my son was finally diagnosed, it was after a year (at least!) of me telling the pediatrician that something was wrong. That annoys the hell out of me. I want parents to be taken more seriously. We are with our children most of the day, and we often know when something doesn’t feel right. Allow us to have a voice! I’ve since grown a lot more confident in my own instincts as a mother, and more open to the many ways in which we can approach and allow wellness into our lives.
As someone in the field of alternative medicine once said to me, “If you have a child on the spectrum, you often have no choice but to seek out every possible option you can”. Because – as I quickly found out – modern medicine alone is still too baffled by the autism epidemic (or not willing to look into anything beyond a genetic link) to offer patients anything other than some basic early intervention and a quick “hope for the best, but there’s not much you can do” speech.
We are are here proving them wrong. Bean has already achieved many of the things I was told he might never achieve, and the list keeps growing. Are there still struggles? Of course. But the future is bright!
Next up, the wonderful progress our son has made since first being diagnosed.