My Child Does Not Have Autism

We were packed in like sardines in a can; all six kids lined up in a row watching the magician. I was sitting on one end of our kids and my friend was sitting on the other. 

To my surprise and The Girl Child’s delight, The Girl Child was chosen to go up on stage as the Magician's assistant for one of the tricks. When she went up there I whipped out my phone so that I could snap a few pictures of her ear to ear grin.

After taking three photos I turned to my left to see what The Boy Child's reaction was to his sister being "on stage."

But I didn't see him.

“Wait a minute” I said to my friend. “Where’s The Boy Child?”

Looking alarmed she quickly scanned the little heads in between us, made eye contact with me again, and quickly stood up to look at the rows behind us.  

He was gone.

Alarmed and trying not to panic to the point of losing my ability to think logically, I started asking the people around us if they had seen The Boy Child get up.

No one had… and yet he wasn’t here.

Two minutes.

I took my eyes off of him for two minutes — maybe not even that long.

When we had arrived that morning at the outdoor festival I had mentioned to my friend that this was the first crowded outing that I had not brought the stroller or the child safety harness for The Boy Child (yes, we have already gone over this, I leash my child for reasons exactly like this one; he is a known wanderer). He had been doing better recently and I wanted to do a trial run. If things started to get out of control, I figured I would simply go back to the car for the stroller.

Not even five minutes after saying that to her, my friend and I noticed a toddler wandering around in front of us. After watching her run to the left and then to the right it became clear that she wasn’t with anyone, or more correctly, no one was with her. Approaching her cautiously so as to not spook her, I asked her if she was looking for her mommy. When she nodded “yes,” my friend went off to find her family and I stayed with her so that I wouldn’t take her too far from where her parents might be looking for her.

A few minutes later her mother had been located and I started questioning my choice to leave the stroller in the car; it was much busier than I had anticipated it was going to be and The Boy Child was already tugging at me to let go of his hand. But by the time we had gotten all the kids settled down for the show and The Boy Child was happily munching on a snack that I had given him (with the sole purpose to occupy him), I was feeling better about the situation.

Until I realized that he was gone.

Barking at my friend to stay with The Girl Child, I started fighting my way over the laps of the people packed in around us — wondering how he even got out of there without making the obvious scene that I was making.

When I finally breached the barrier of the tent and took a look around, my heart sank. There were people as far as the eye could see. There were games and food stands, other shows going on, and parking lots.

There were two parking lots.

But what there wasn’t, was any kind of organization. There were no employees to make an announcement because there wasn’t even a speaker system. There were no doors to block a child’s exit into the street, because there were no doors. There were no police and no one that looked like they had any kind of authority.

There was no Boy Child.

There was nothing but festive chaos and my child could be anywhere.

I stood there for what was probably only a few seconds — but felt like an eternity — frantically looking around while trying to decide if I were The Boy Child, would I head towards the games or food first? A million thoughts raced through my mind; the "missing child ID card" that I keep in my wallet that has all of his information, a recent picture, and his thumb print on it. I thought of the DNA swab at home in my freezer, part of a child ID kit that the police had given everyone at daycare. I thought of the fact that I always dress him in a solid color polo when we go to crowded places so that I can easily describe what he is wearing and people can easily spot him. I thought of the photo that I always take of the kids before we head into an event, because the parenting magazines told me that it's best to have a "last seen wearing" picture.

I thought of everything that I always do just to prevent a situation like this from happening and in one brief moment, of all the minutes that make up his lifetime, I had failed my child and now he was gone.

With my hands on my head I spun around, deciding that I was going to head to the closest parking lot because that posed the biggest danger. Along the way I was going to scream his description to everyone within earshot and beg people to call 911.... but when I turned around, my heart stopped.

There he was, walking towards me, hand-in-hand with a woman who was asking me "does he belong to you? You look like the most panicked person here." 

Not even bothering to answer, I ran to him, scooped him up, and buried my face in his neck. “They get away quickly don’t they?” she said to me over my tears. Completely overwhelmed with relief, I heard her say something about how she saw him run full speed out of the back of the tent and when she didn’t see anyone running after him, she had to literally chase him down to bring him back.

I say this —and I don’t say this lightly — but in those moments I think I experienced more fear than I did the first time I realized I was going to be raped. 

My heart was not only breaking, it was completely missing. My world wasn't shattering, it was gone.

As you know from past posts I’ve mentioned that The Boy Child has been sick. I don’t want to reiterate everything I’ve already said, but just to recap, the kids and I have a rare genetic illness where our bodies cannot process certain proteins. Because of that, if we eat those proteins they build-up in our blood and essentially poison us by causing widespread organ dysfunction and a toxic effect on our systems.

My daughter was diagnosed after she nearly died as an infant, and at the point of my diagnosis I had everything from osteoporosis to a serious heart condition. Thankfully once a diagnosis was made The Girl Child and I both recovered nearly 100%. Today, aside from some joint issues (hello chiropractor!) The Girl Child and I don’t have many of the issues that we used to have. My heart is fine, my bones are fine, and as long as the kids and I stay on the diet, our risk for health issues from the disorder is zero.

When The Boy Child was born I proactively kept him on the same medical diet that The Girl Child and I were on, obviously not wanting to put him at risk for anything. But what I didn’t know was that he had a slight variant of the disorder that caused him to also not be able to process casein (dairy protein), a protein that The Girl Child and I do not have a problem with.

At 18 months old The Boy Child had a skill set of a baby in the 3-6 month range. Doctor’s tossed around phrases such as “catastrophic effects on his future” and “low IQ with a society dependent level of functioning.” They all but wrote him off to an institution and it didn’t help that his father had given him a black eye and possibly shook him. In the Dr’s minds he was brain damaged and probably not going to be good for much.

You can read more about my journey with that by clicking here, but to skip ahead I wasn’t about to take their prognosis quietly. I put him in an intensive therapy program where he received therapy 10 times a week and even more importantly I removed casein from his diet.

One year later he was reassessed and scored above average in his skill set.

One. Year.

In one year my child had gone from “not worth much” to “totally fine.” As one doctor said “you got him back” and I did.

I got him back.

But then several months ago he got really sick. After lots of Dr. appointments, a hospital stay, and a surgery, he was on the mend from a physical perspective, but mentally something just wasn’t right.

I took him to our pediatrition who agreed that something was wrong and off we went to a litany of specialists. Their opinions were all over the place with claims of everything from a low IQ to a psychiatric disorder, but aside from medicating him no one really had any ideas on what to do.

I already don’t like Western Medicine and I stay as far away from it as I can, but also being a responsible parent I realize that sometimes it does have a time and a place. So while I shunned their prescriptions and diagnoses that I didn't agree with, I still wanted to do my due diligence and explore all options which is why I kept taking him to different doctors.

Until a doctor tried to give him the final diagnosis of autism.

How does a four year old child go from being pretty much normal to being autistic within a matter of months? He’s way too old for that and furthermore, his symptoms don’t align with autism. Sometimes he is fine and then in a matter of hours, he’s not fine. His language skills are phenomenal, but then other times he has almost no language at all. One day he can remember how to do something and the next day he can’t, but then the next day he remembers how to do it again. One day he's playing a game with his entire class, but later that night I'll be talking to him and can clearly see that he has absolutely no concept of what I'm saying to him. I’m not a doctor but I’ve worked with enough special needs kids to know that is not autism.

But also being a parent and knowing how hard a diagnosis of autism can be to accept, I reached out to my friends. I had lunch with a good friend who is an occupational therapist and I made a tearful phone call to my Bestie (who is a teacher).

“They are telling me he is autistic. What do you think?”

"No way, he is not autistic" they all said. "His humor is bang on, he has the ability to appropriately engage with his peers, he understands social cues, he doesn't have any OCD tendencies, and he's very empathetic. Something is wrong but it’s not autism."

That’s what I thought too.

Going back to the pediatrician, the only Doctor who has known me long enough to take my stubborn and non-conventional ways seriously, I laid out my defense.

“He had a lot of mental challenges when he was younger, but once he got on the diet he caught up and was fine. He cheated on the diet and now he is not fine anymore. This has to be a residual effect of the food he ate and I want to take a closer look at his brain. I’m not just going to medicate away the symptoms and mask the issue, because I don’t think we are dealing with the right issue.”

The Doctor agreed.

The Boy Child was sent for some brain tests that showed he is suffering from a widespread electrical dysfunction of his brain. His entire brain is misfiring and although he is not having seizures, his brain waves show that his brain is doing exactly what a brain does right before it seizes. The reason his skills have been so scattered is that his brain is entering stages that put him on the verge of having a seizure. Thankfully he is not actually seizing, but for obvious reasons the fact that his brain is misfiring is a pretty big problem.

The “funny” thing about the casein protein, is that along with gluten it is one of the only proteins that has the ability to leave our digestive systems and travel up to our brains. So basically what happened was that when The Boy Child was sneaking food at daycare, he was ingesting something that is essentially toxic to him, where it then took a direct path right to his brain and actually altered the way his brain is functioning.

That left me with two options. The first option was to medicate him in an effort to alter his brain’s electrical activity. The effects would most likely be immediate, but the downside of that is that he would most likely be medication dependent for the rest of this life. On top of that there are side effects to the medication and over time it would be expected that his body will adapt to the meds, so we would always be riding the wave of new treatments.

The second option is to actually fix his brain.

I like that option better.

We are now in our third week of what the kids and I call "brain therapy," a therapy in which The Boy Child's brain waves are monitored during the therapy session so that we can aim to retrain the way his brain is functioning by constantly redirecting him when an abnormal brain wave appears. 

The process is intense, I'm not going to lie. It’s time consuming and expensive, but for all intents and purposes it’s a cure. "His brain is like plastic at this age" says his doctor. "Because rapid brain growth occurs until roughly the age of 5, his brain is still molding itself into a functioning organ and he stands a great chance of learning to rework the way his brain is functioning."

He deserves a cure.

I take him to therapy three times a week, which is a two hour round trip from my house. The first phase of the program is ten weeks long and then he will enter a maintenance phase where he will go once a week until we are no longer seeing any abnormal activity. I’m not going to lie and say that I’ve seen a miraculous change in him, but even the skeptic in me can't deny that I've seen a few things that are leaving me hopeful. 

I’m seeing the glimmer of the boy that I thought I would never have, but found, and then lost again.

I’m exhausted all the time. Some days we go to therapy in the middle of the day, other times we got right after daycare and don’t get home until 9pm. Still other days we get up at 5:30am and do therapy before I go to work. Sometimes those days are back to back and that’s killing me. I’ve already seen my struggling finances take a grave turn for the worst because of the hours I'm losing at work, so I went ahead and met with my financial planner to go over what my options are in regards to my budget. In the end I was faced with some tough decisions, but I decided that even though I once again risk losing my house, I will take that risk if it means I can help my son.

I thought long and hard about sharing this story with you. As a blogger I promised myself that I would never cross the line where I am sharing stories that are not mine to tell; giving away private information that belongs to my children. Sure I talk about the goofy things they do and I touch on certain topics when it comes to the grief of losing a parent or single parenting, but for the most part I do my best to respect the fact that their lives belong to them, not me

But this was a story that needed to be told, because aside from raising awareness for abuse, learning to medically advocate for yourself and your loved ones is a subject that I'm really passionate about. There are so many parents out there that are just blindly following doctors orders but I'm living proof that doctors don't know everything. They nearly killed my daughter with a misdiagnosis that I knew was wrong and now here we are again, with doctors that were too fast to throw an autism diagnosis at my son. I respect that Western medicine has a place and that doctors are often just doing their best, but as a parent, please learn to advocate for your child. doctors can definitely be right, but they can also be wrong.

All that aside, I still can't believe that my son has once again been essentially brain damaged by something he ate, but I can't dwell on that right now, because right now I'm too busy looking for my son.

There is nothing more terrifying than losing your child. Seeing him get sick was just like that day at the magic show, like one minute he was here and the next minute he was gone.

But as his mother I will do anything to get him back.

So Boy Child, you listen to me; I’m coming for you baby. I’m going to find wherever it is that you are hiding and I’m going to bring you back. I don’t care what it costs, I don’t care what it takes, I promised you that I would never leave you, and I won’t.

Without you my heart is missing.

Please come back.

 **************

You Can Find More About The Boy Child's Journey Here:

Saving The Boy Child

Our Genetic Illness

I Stopped Listening To Doctors When They Nearly Killed My Daughter

Take A Deep Breath