The Day We Went to the Circus

September 05, 2013


By Kelly

Kelly-Greenberg-(Ben)2Most parents will never forget the day they realized their child had autism. For me, it was the day we went to the circus. That was the day my denial ended, and our autism journey started.

When the lights dimmed and the show started,  Ben lost it. But we were accustomed to these sort of strange outbursts. He head-butted my cheek trying to escape. When my husband tried to take him and put him on his lap, he head-butted him, giving him a bloody nose, as well as clawed up his face. I grabbed Ben and headed to the outer hallway of the arena because I knew he just needed to keep moving. In restaurants or public places, we just had to keep moving, so we went off for a walk...again. I was thinking, Ugh, I will get out in the hallway and exchange glances with other parents missing the show while walking their kids, maybe start up some conversation to pass the time while my daughter and hubby are in there enjoying the show. I walked through the doors and there was absolutely no one outside in the halls. No younger kids, no older kids... just Ben and I. It was that moment that I knew.

Ben’s behaviors started flashing in my head. Repeating the same phrases over and over, spinning in circles, rocking, making a ticka-ticka noise all the time, tantrumming, running into walls, running off stairs, no fear or fear memory, beating his face bloody when something in his routine changed, our lack of connection, sensitivity to lights and sounds, his freakish strength, covering his ears, seizures, walking on his toes, ripping off scabs because it was something new on his body that didn't belong...the list was long. After the circus was over, I remember walking to our car. In the parking lot, I told my husband we needed to get Ben evaluated.

Next came the actual diagnosis. We had done some Early Intervention through the school district when Ben tested with delays, but they said that they could not diagnose kids and we should get an evaluation from a psychiatrist or pediatric neurologist. At the pediatric neurologist, I got what I knew was coming, but at this point I just wanted my husband to hear it out of someone's mouth because he was still in deep denial. The neurologist asked us some questions and watched my son continually pull at the door handle and ignore me as I called his name over and over. He told us, "Yes, I believe your son has autism."  I asked if he had Asperger Syndrome, and he said, "No, he has classic autism, and is significantly affected."  My husband walked out with my son to go walk him, and I stayed to ask some questions.

Kelly-Greenberg-(Ben)3I looked at the diagrams of the brain and neurons on the wall and I asked the doctor, "Can you show me what autism is on here?  How does it work?  What is wrong in the brain?" He started, "Well what we believe is..."  I stopped him. "You mean they don't know for sure what causes autism?"  He continued, “Well, in theory, the messages traveling in the brain somehow get lost or don't..."  I stopped listening and thought, If they don't really know what causes autism, how can they be so sure it is genetic and can't be fixed?

I asked the doctor about special diets and therapies that I had read about. He told me not to believe in fairy tales, that there was no data or real science to support such claims, and I could seriously harm my child by trying these "alternative therapies."  I will never forget the next thing he told me: "The best thing you can do for your son is just accept him for what he is and get him behavioral therapy so you can control him when he is older, so he won't need to go to a living facility. He may never love you, he may never get out of diapers, you may never communicate with him like you do your daughter, but you just need to come to terms with that and hope for the best."  His words were the opposite of hope. The words "What we believe autism is..." kept circling in my brain. But so did the tiny light of hope, that a mother’s love could conquer all, and my journey began.

Five years ago when I started my journey, a TACA chapter had literally just started in Las Vegas. I took what I learned there and we went to a DAN doctor and put Ben on a GFCF diet. My husband freaked out because a day or two after starting the diet, our son had a horrible reaction and seemed to become more autistic and out of control than ever before. It scared us, but I thought, If taking these things out of his diet can cause such a horrible reaction, maybe it is affecting him, maybe it’s withdrawals. Despite my husband’s concerns, I kept Ben on the diet. After a couple of weeks, he calmed down and the fog lifted. He started becoming more aware. He was still echolaic, but was now trying to use language appropriately.

Next, our DAN doctor ran tests and prescribed MB-12 shots. Even though the thought of injecting my son horrified me, this was the next HUGE step. I remember my son was stuck learning colors for weeks, just repeating them. After his first shot, he knew all the colors. We gave him a shot every three days, and by the third day, his brain was slow and his thoughts had a stutter. The next morning after he had a shot, his brain was firing on all cylinders again. He started learning emotions and everything else rapidly.

We also had other supplements that he would take -- mainly vitamins, probiotics, glutathione, etc. By this time, Ben was learning to form sentences, but still spoke in a strange robotic or monotone manner. I asked the DAN doctor if we could do heavy metals testing. The results showed lead toxicity, but it was Ben’s mercury levels that were off the charts. This took us to the next big step in recovery -- chelation.

Kelly-Greenberg-(Ben)1Every child is different, but my son was a responder to most interventions. Chelation was one I saw results instantly. The first day we chelated him, he woke up an hour after being put to bed, which was really unusual. He was covered in sweat, so I changed his clothes and put him back to bed. The next morning, I heard my daughter trying to tell me what she wanted for breakfast, but turned around to see it was my son!  I thought it was my daughter because he sounded just like her, with such natural speech. I never heard the robotic monotone voice again. He also never had another seizure after we chelated the mercury out of him.

Because we couldn't afford to do ABA therapy and biomedical interventions at the same time, I know my son's recovery was due to fixing the medical issues that had been causing his symptoms. Eventually I stopped all biomedical interventions when he no longer needed them and tests showed his body was taking care of itself. At that time, he was around 4 years old, and we started ABA to make sure there were no holes in his development and socialization so he would be ready for kindergarten the following year.

Today, it would take a trained professional a long time to spot any autistic symptoms. Ben is still on a GFCF diet because every time we take him off, he starts having emotional problems and I see him regress, so he may need to always be GFCF. He just finished 1st Grade in a regular class with no support, and his teacher couldn't believe he ever had a diagnosis. He received all A's and one B on his report card and got a principal’s award for exemplary behavior and kindness. Remember, this was a child a doctor said may never show love.
Ben hit his head pretty hard on the tile floor one day, and I took him back to the pediatric neurologist who originally diagnosed him. He could not believe this was the same boy. He was excited and smiling and asked me if I did the intensive behavioral therapy that he recommended. I told him I did biomed and the whole "alternative" thing. His eyes dropped and he just looked at his notepad and said, "He must have just grown out of it." Wow, I didn't know you can "grow out" of a genetic disorder!  This is why I know mainstream medicine is wrong... my son is proof.

I think the biggest tragedy being perpetuated by doctors today is the killing of hope -- telling parents there is nothing you can do, your child was born this way, or it’s just genetic. I am glad I listened to that tiny light in my gut, my motherly instincts. Throughout my son's recovery I held onto that. I watched videos and listened to stories of parents recovering their kids. I went to TACA meetings for support and guidance.

There are plenty of people out there with low expectations for our kids, and plenty of doctors and professionals ready to give up on them. Don't join them. Believe in your kids and trust your heart. Recovery is difficult. The journey is excruciating and costly, but autism was much worse. I had different goals in life before autism, material things and prideful things. Autism changed all that for the better and I see the REAL beauty in life now. If I die tomorrow, I can say I achieved what doctors and modern medicine said could not be done. I had hope when there was none, I had faith in my boy and he came back to me and now he has a future. I have achieved the impossible.