I feel I really need to “give a shout out” to what was quite literally a life-changing documentary for my family, Loving Lampposts.
First, let me give a brief history about life before we watched it. On a physical developmental level Joel seemed to be moving along at a rate that was appropriate. Medically, he has always been very healthy. He’s never experiened any instances with seizure activity, allergies to foods or other environmental agents, or any of the stomach/intestinal problems that strike some children with Autism. He also did not respond negatively to any of his vaccinations, other than not liking the process of getting the shots, of course. Behaviorally, he was almost always pretty easy going, he smiles and laughs and plays with toys, etc. He is very affectionate with us and always has been. In these areas, there never was a cause for concern.
However, there were other behaviors he exhibited that were highly unusual. Joel has only ever spoken a few words in the five years since his birth, but he isn’t silent by any means. He squeals, hums, blirts out sounds like “gah” or “choo choo,” clicks his tongue and other kinds of noises. At first, we didn’t really worry too much about the delay in speech because Will was a late bloomer verbally and now we cannot get him to stop talking. Ever. There were times, and Joel still does this every now and then, when he would be sitting by himself not interacting with anyone and start laughing as though he had just seen or heard the funniest thing. I am talking about full on belly-laugh giggling. We didn’t really know what to make of it and certainly didn’t think there could be anything “wrong” with a child laughing, right? Who starts to worry when their child laughs? I remember one time I did sit down to my computer and googled “child laughing for no reason” and one of the things that popped up was Autism-related. I quickly closed my eyes to that because Joel didn’t have Autism. I mean, you saw the previous paragraph, right? There were no Rainman signs or symptoms in Joel, so, that was just ridiculous. Another thing about Joel is the constant stimming. He flaps his hands, he spins, he walks around on his tiptoes, he “dances,” etc. I mean, from the time he wakes up in the morning to the time he goes to bed, he is in near constant motion. It sometimes makes me dizzy. When Joel isn’t moving, he is occupied with something. I’ve mentioned on this blog several times his fascination for shiny things and anything that can be ripped, torn or shredded. He loves my cooking utensils. We have had to put child safety locks on all the kitchen drawers to prevent him from pullng everything out. On occassion, I will purchase measuring cups, slotted spoons, strainers and similar items and he is every bit as excited about these “toys” as Will is about his Legos, action heroes, and toy cars.
Even with all of these behaviors, or “quirks” as we called them, we were still in a state of denial about the situation. We always expected that he would “snap out of it” and start speaking and “normalize.” What can I say, denial ain’t just a river in Egypt.
One night about a year ago I was the only one awake and decided to watch something on Netflix. I was flipping through the New Releases and found Loving Lampposts and thought it would be pretty interesting because I’m a psychology major and that was right up my alley. I think there was also a tiny part of me that wanted to watch on a more personal level, but that was a very small part. After all, Joel DID NOT have Autism.
You can find the trailer here.
I got through the first 20 minutes or so into the movie and was enjoying it in a pretty detached manner. None of it really pertained to me or our household. I didn’t recognize any parallels to my own life until the audience was introduced to an Autistic adult who works with Autistic children by teaching them through music. My true epiphany, and I’m not being dramatic, that is what it was, came when we, the audience, see him interacting with a little boy who has Autism. This little boy was smiling, squealing and stimming exactly the way Joel does. It felt like I had been knocked over the head when I saw that. I remember thinking, “Oh my gosh, THAT is Joel.” I watched the rest of the movie thunderstruck. I didn’t wake Husband when I went to bed. I just worked things over in my mind. In the morning, I had him, Maya and Will sit down and we all watched it together. From then on, we have made Autism Awareness our number one priority. Not just for the community, but for ourselves. I cannot tell you how much time I have spent reading and researching everything on this subject and I am just getting started.
One of the things I appreciated the most about Loving Lampposts is the attention given to how Autism is viewed by the public as well as by those who are actually affected by it. They emphasize the point that you can either be on a mission to cure or “defeat” Autism or you can accept the diagnosis and embrace what makes these children and adults so special and unique. Husband and I decided to take the “acceptance route.” We are not on a mission to find a cure, nor do we expect there to be one in our lifetime. If we are wrong and a cure is found, then we would carefully weigh our options. If Joel is able to have a say in it, we would let the decision be his to make. It is our job as parents to support our children emotionally, physically and mentally as much we can.
This does not mean we reserve any kind of negative judgement toward other Autism parents who do hope to find a cure. Everyone handles this diagnosis differently and making the choice to accept or defeat is just part and parcel of moving forward. After all, forward motion is just what is needed to help spread awareness.
As for our extended denial, I will always regret this. We were aware that something was going on, but we let our fears cloud our judgement. Sure, we are making great strides with Joel now, but we have lost some valuable time. That is why this blog is so important to us. If our story can in any way affect the outcome of another child, then it might not have been in vain.