Discussing Autism

Wait, so Autism is not the end of the world?

Since we adopted our son from Russia in the summer of 2005 we have struggled with him. From his fingertips to his toenails the child is a medical mystery and developmental mess.

Did we have any clue when we adopted him? Sure, some. We knew he would be delayed because most institutionalized children are. However, just before he turned 3 the local school district told us that they estimated his developmental age to be between 13 and 18 months. We were floored.

AJ has been diagnosed with Institutional Autism, H Pylori, Severe Gastritis, food allergies, Gross and Fine Motor Delay, Receptive and Expressive Speech Delay, Post Traumatic Stress, Separation Anxiety, and Sensory Processing Dysfunction. He has also had three surgeries; ear tubes and 2 GI scopes.

He is only 4.

The first several months with AJ were pure hell. He had night terrors that lasted 45 minutes to an hour every night (he still has these 2-3 times a week). We discovered double ear infections that resulted in ear tubes. We also discovered some creepy crawlers that made the trip home from Russia with us. They were NOT very welcome in our home.

Developmentally, he did not progress quickly. By his 3rd birthday he had only about 100 words and could not put phrases or sentences together. He was just beginning to run without looking like an otter (or falling all over himself) and he screamed at me every time he tried to ride his tricycle (because he was so frustrated).

We tried everything for him. We rid him of his H Pylori (a bacterial infection in his gut), we removed his problem foods (gluten, casein, bananas, oats), and we worked diligently on his sensory issues. Still, he seemed locked in his own world…screaming uncontrollably when things were not right, when I would back up the car instead of go forward, or if he could not have graham crackers to ease his tummy aches.

He had orange stools up to 10 times a day, acid reflux, gas that could light the entire house on fire, sleep problems so severe he was getting close to (maybe) 5 hours of sleep a night, no social skills, aggressive behavior so severe that I had to learn to physically restrain him or get hurt myself (or worse, allow him to hurt himself), and bum rashes so horrid we resorted to Bag Balm, a cream used for milking cows.

So, when we moved back to Chicago in the summer of 2006 it was like a weight had been lifted. He qualified for Early Childhood, we found the Pfeiffer Treatment Center and started him on a vitamin chelation to rid him of his heavy metals, yeast, and to balance his bacteria, and our parents were both there to help us with him.

Since our move AJ has thrived. One might say he is “Finding the Words”.

I have said many times on my blog, Discussing Autism, that there is no cure for Autism. Because AJ’s diagnosis is Institutional Autism and not organic autism, he can be “cured” and he can recover. Unfortunately, there are hundreds of thousands of children with autism who will not be cured.

However, there are some children like AJ who have been cured…and they have Autism.

The documentary, “Finding the Words” is their story. It is the story of eight “perfect babies”, each given a grim diagnosis of autism spectrum disorder (ASD) as toddlers, whose grieving families fight prejudice, misinformation, and despair to get their children well again.

Written and produced by Elizabeth Horn Nelson, the documentary has really picked up steam because there are parents out there like me who have hope. Horn Nelson is also the co-founder and president of the Autism Recovery Consortium and even the Huffington Post picks her up. You can view the trailer for the documentary here.

According to Nelson Horn in a 2005 interview, “The first impression you get with this diagnosis is that you’re on your own,” Horn said. “Even though there were resources, there was no sense of direction anyone could give as to how to proceed.”

For over a year that is how we felt with AJ. Then, when we had no where else to turn we found The Pfeiffer Treatment Center and finally got our answers. They were the only facility willing to perform biomedical testing for us. You can read a very scientific explanation here.

How much is AJ talking now that we did a vitamin chelation? So much so that there are times he won’t shut up! (Perhaps he should try out for Autism, the Musical!)

He is constantly chattering about going to school and how much he likes his new teacher. He sings Twinkle-Twinkle loud and out of key as he is falling asleep. He is finally asking questions (but everyone is labeled as a she).

And occasionally from across the room or from upstairs I hear him yell…”Marcie, come here!” in a sing-sing song voice.

Could you punish a kid for that?