Guest Post!
We’ve got a really special treat for you today, one of our families was kind enough to allow us to share their story with you. It comes straight from the heart of a mom who’s child was diagnosed with autism a little over a year ago, but I’ll let her speak for herself.
One Silent Year Speaks Volumes
by Loren Cantos
January 18th. I’ve been dreading today. It’s like a bad premonition you just can’t shake. It has permeated to my core and will never leave, tattooed on my inner being.
On January 18th, 2012 we took Anderson to the pediatrician for his 15 month appointment. On the docket for this appt were the standard height and weight, discussions about Anderson’s progress, and routine immunizations. Our little guy weighed in at 23lb 8 oz and measured in at 31” tall. We talked about how he had started walking since his last checkup. We were asked if he could say at least 3 words. Three words? He could say over 20! He even said “duck” right on cue and everyone smiled. They asked if he was identifying body parts and we gloated as we told them how he could identify all the facial features and how he also loved to identify his toys as we asked him to. The nurse came in and said she just loved when Anderson came in for appts because he was just “one of those patients” who makes everyone he comes in contact with happy and that his smile could light up a room.
Proud parent moment for sure. Proud enough almost to make me take my mind off of the sick feeling I had in my stomach that morning. For some reason as I was getting Anderson ready for his checkup I just had a bad feeling. I didn’t know why and I couldn’t shake it. It was like my Mommy intuition was screaming at me, telling me to reschedule, that this could wait. But it couldn’t wait, could it? I mean, according to the vaccine schedule he was due for more shots and that wouldn’t change whether or not we postponed the appt. So we stat in the yellow room with the colorful flowers al over the wall after the dr completed his assessment waiting for the nurse to come back in with the shots. Part of me wanted to scoop my little boy up and run out of there. But this was for his own good, right? Yes, surely something that was supposed to protect him couldn’t hurt him.
The door opened and in walked the nurse with the shots. They always put them on a little plate with kids characters on them. They lay there ominously among favorites such as Mickey Mouse, Dora, and others. The bad feeling I had was increasing by the minute. The nurse prepared to administer DTAP and the MMR. The DTAP was administered and my happy little boy’s smile that lights up a room was no more. I knew we were halfway done, and I was just ready for it to be overwith at that point. This next part is burned into my memory forever. If I forget everything I’ve ever known I won’t forget these words. The nurse picked up the MMR and flippantly said, “this is the one everyone worries about with autism so if you notice anything let us know.” And no sooner had the last word rolled off her tongue the needle was already in Anderson’s leg, injecting him with something that ravaged his brain, and out before I could open my mouth in protest of her statement. I knew then. I felt my heart sink in defeat. Anderson was screaming and I was too, only mine was a primal scream inside my body that only a mother can feel. I picked him up and brought him to my breast, comforting him in the best way I knew how at that moment. He sobbed until he gained control enough to eat. And even then he would eat for a second and remember what just happened and would sob again. I felt like I had been slapped. I brushed my tears away and told my little boy it was going to be ok, and that it would only hurt for a minute.
We walked into that office with a little boy who was more than on track. He was ahead of the curve. We walked out of that office with a different little boy. Within just a very short period of time his words started to decrease. The ducks, stars, bites, cats, and more were fewer and farther between. I can’t recall exactly when we realized he had stopped speaking altogether. He stopped identifying facial features and his favorite toys. He stopped playing with his toys altogether. He would just stare at the tv screen mindlessly for hours, watching the bright colors and characters dancing across the screen. He became obsessed with this. If the tv wasn’t on he would stare into space. We would try to get him to look at us, and in those rare moments when he did his eyes glazed over and I could barely see the twinkle that had been there since was born. He didn’t look at us, he looked through us, like we weren’t even there.
Dave and I were at a loss. What had happened to Anderson? We had heard over and over that there was no connection between vaccines and autism. That no studies had ever shown a connection. We found out later in our intensive research that no study has EVER been done on vaccines and autism by a research organization that doesn’t benefit financially from vaccines. In other words, there have been no studies done by a 3rd party who has nothing to gain or lose from the results. I remember when I brought up the “a” word to Dave for the first time. It was late at night and I told Dave I needed to talk to him about Anderson. I was so nervous. I told him that some of the changes we had seen in Anderson seemed to be manifestations of autism. Do you know how hard it was to say Anderson and autism in the same sentence? We began our research that very night. We lay awake in bed, each of us researching on our phones, comparing our son to the myriad of symptoms that make up autism, placing an invisible checkmark next to teach one that applied. I don’t think either of us slept that night.
We decided to make an appt to talk with Anderson’s pediatrician. I called and couldn’t disguise the tears in my voice and as I told the receptionist why we wanted an appt. She got us in the very next day, and told me she blocked off extra time to discuss what we needed to. When we walked back the same nurse who gave Anderson the shots took us to a room. It was a different room this time. A different shade of yellow, and it had Sesame Street characters on the wall. Almost passed for a happy place. She shut the door and said when she saw the reason for the appt she immediately thought not Anderson! I wonder now how my son is different than any other child this could have happened to. Any child should be given that same consideration. We waited anxiously for the dr to come in. He came in already guarded. He asked us to tell him what was going on. We told him how Anderson had regressed since his shots. He tried with no success to get Anderson’s attention several times through the appt. The Nurse had run a diagnostic questionnaire (called the MCHAT) before he came in, which was basically a series of questions about Anderson. He looked over the results and said there was enough on there to concern him, but that this diagnostic was made for children 2 years old and above, and that Anderson was no where close to that age. He essentially shared a book with us called The Out of Sync Child, which was about Sensory Processing Disorder, and told us to call Marcus Autism Center now because it would take at least 6 months to a year to get an appt with them. And that was it. We again walked out of that office with our son, except this time we knew we were on our own to figure out how to help him.
They say a worried mother can do better research than the FBI. They are right. Except Anderson has two parents who were worried. We started our journey then, and the things and people we have discovered since have been monumental in helping Anderson. He has come a long way in a year. He’s gained part of his social skills back, has progressed leaps and bounds through speech and occupational therapy, a change in his diet, addition of supplements, and 20 hours a week of school that is tailored to his needs. He’s started to speak again. He might be back up to a little over 20 words. It’s kind of crazy that we are celebrating that same milestone one year to the day later. We thought we’d be celebrating other milestones but that wasn’t the plan. You see, pulling your child out of the black hole that is autism is an intricate cocktail. Some things help, and some things don’t. It’s not the same for every child. If you’ve met one child with autism, you’ve met one child with autism. We still have a very long way to go. While Anderson has improved greatly, he is showing some new manifestations of autism that we will be tackling in the days ahead. We will stop at NOTHING to help him recover. We are praying that he will recover fully, knowing that may not be the case. This is our life’s work, and this is why we are passionate about sharing Anderson’s story. We’ve already seen other children changed through him, and who knows how many children have been spared what he experienced by hearing about what happened to him.
We love you Anderson and will fight for you until the day we die. We may lose friends along the way, and we will certainly gain new ones. But until my dying breath I will be an advocate for autism awareness and vaccine injury prevention. Don’t hesitate to talk to us about this. It’s therapeutic for us and could be helpful to YOU.