I want to tell you all a story. It’s about a mom who had two babies 12 months apart. And the second baby was different. He was sad or mad almost all the time. He did not sleep…ever. He gagged on even pureed baby foods. He could not hold his own bottle. He could not pick up food from his tray even as he got older. He could not crawl at nearly eleven months old. Transition from one room to the next or trying to remove a toy from his hand to bathe him would cause severe meltdowns.
I was perplexed. I had just done this and it was not this way. My husband was on a six month deployment. I could describe the hardships and the differences, but he was not there to see how hard this baby was! I initially thought he was in physical pain or that some physical ailment was making him so miserable all the time. I took him to allergists. I took him to dentists. He had cut four teeth by only 4 months old…was that the problem? I asked the pediatrician to watch videos. I kept telling all of them something was different. I was told by all of the professionals that some babies are just harder.
Fast forward to about 14 months old. He still did not have any words. He did not respond to his name most of the time. He walked in circles a lot and got awfully mad when you stopped his process. He could not go into stores without screaming and bashing his head on the floor or cart.
A doctor finally referred us to Early Intervention. We were told he was behind in speech and fine motor and that he has a lot of sensory issues. One therapist called it SPD (Sensory Processing Disorder), but no one had used the “A” word. In fact, when I questioned professionals about autism I was always told that he made eye contact and therefore was not autistic.
So I latched on to the only terminology I had been given and joined every SPD group there was. Many of these overlapped with autism groups. And some parents pointed out that most of the time SPD is just the precursor to an autism diagnosis. I met a friend in one of these groups and our sons were about the same age. With some of the same struggles.
We had read about the Gluten Free Casein Free diet that was supposed to work miracles. She tried it and kept it going for awhile. I tried it for a few months but saw a miserable kid who seemed even grumpier and was starving all the time. I saw no improvements. She tried to talk me into essential oils. Initially just offered them as a way to help him sleep. The smells made him gag, so I knew that wouldn’t work. Eventually she was telling me I should be rubbing it on his throat before speech therapy or even have him ingest some of it. That did not seem like a good idea to me, but to each their own.
Our kids both got an autism diagnosis. My son was diagnosed as severely autistic. Her son was diagnosed with PDD NOS.
Many in the internet groups I was in were very early on in their journeys. It seemed like everyone was throwing treatments at the wall just to see what stuck. I remember at one point being told that parents might as well try whatever as far as biomedical stuff went…it couldn’t hurt. Many in the groups focused on gut health and heavy metals and a number of other potential causes. There were detox options and probiotics and chelation therapy and hyperbaric chambers. For the most part I just absorbed it all and some of it I read in disbelief. In the meantime, we went to all of the doctor recommended therapies and had him in special needs preschool.
As my friend’s son aged she attributed his development to many of the treatments she had tried on him. My son was progressing too but not at the same rate. Looking back, our kiddos were on very different ends of the spectrum and a comparison of progress was ridiculous.
But I decided to finally listen to her on probiotics. She gave me the number of the guy she used to get the extra strength probiotics that were helping her son.
I called the number and a guy with an accent answered. He explained that he makes all of his probiotics himself and they are 10,000 times stronger than what you can get in the store and doctors and scientists will all be coming to him in time.
I abruptly hung up on him. What was I doing? What harm could it do? Some dude putting a bunch of shit in a bottle in his basement and I’m going to force it down my kid? Yeah, that could do some harm.
No. No. No. It was a pivotal moment for me. For how I viewed autism. For how I viewed my son. It was a moment in which I acknowledged my own desperation and realized that my attitude had to change.
I was told by my “friend” that I was failing my child by not trying everything in my power to recover him. I was told her son was progressing and mine was not because of the choices I was making. I was promptly unfriended when I asked for peer reviewed research for a few of the claims she was making about cause.
And I stopped looking for ways to recover him or heal him or fix him. My goal was never for him to be normal. But I hated seeing him struggle. And I think for many parents of young children on the spectrum the desperation and exhaustion pale in comparison to the pain of watching your baby go through something you cannot fix.
We started seeing changes in our son when we started listening to him and reading him. Even before he had words he would tell us with his behaviors when things were too much. When we really observed him and learned his triggers, his aversions and his reinforcers, we no longer had a child who was miserable all the time. We have some hard days, but we also have some awesome days.
Looking back at pictures and videos of that time I am transported back to a time of desperation. And to the young families currently living it, I cannot promise you it will get better. Everybody’s journey is so different. But I can tell you it will never get better if you are listening to mom groups on the internet more than you are listening to your own child.