maggie davis' granddaughter's Asperger Syndrome Story
My granddaughter has Asperger's Syndrome. This story, told by my daughter-in-law, in an e-mail response, is a powerful one.
Before I begin our story I would like to say that, first, I admire and am grateful for your effort. Second, this is not a road I like to go down. In fact, I have procrastinated about writing my story for you for quite a while because it gives me chills and fills me with regret. Thanks to good friends, good therapists and the Son-Rise Program, I no longer see my daughter as damaged by poor judgement on my part (deciding to vaccinate). Rather I see her as a full human being—Autism and all—whom I love as she is though I believe in her full potential to overcome her disability completely. As result, I don't like to look back only ahead. However, I feel duty-bound to convey what I know to others who are in a position to change things.
My daughter had two vaccine reactions. The first one may or may not have spurred on her autism. The second one clearly has a before/after to it.
1) Though she never reacted before, my daughter didn't stop crying after her DPT shot received at six months (Jan 1995). It was not the high-pitched wail mentioned by that hideous fact sheet that the pediatrician hands out. It was a non-stop cry and I was concerned. Nobody at my pediatricians office was concerned; they said it was "not unusual" and when I commented that she never reacted before they said: "Yeah, sometimes they only react the third time. Nobody knows why but sometimes it happens that way." (I have never before or since heard this.) Meanwhile my daughter did not stop crying. And, in the middle of the night, my husband and I decided to take her to the Emergency Room. There was not much they could do there other than note the reaction and give her Tylenol. The ER doctor recommended that she not have the vaccine again.
Next time she was due to have the DPT I told our pediatrician what the ER doctor had said and, literally, he laughed and said: "That's an ER doctor for you. No that kind of reaction doesn't mean anything. She should have the vaccine again."
Well, to my eyes my daughter seemed fine so I figured I should pay attention to my pediatrician (they're a breed I no longer trust). But, as I had done prior to all my child's vaccinations (because I was slightly familiar with the backlash against vaccines) I called the Vaccine hot-line paid the $12 to find out about vaccine lot/batches to avoid. Imagine my shock when I heard the lot number my daughter recieved at six months announced as one to avoid. Did I mention this to my pediatrician? No. I was still too soft-spoken, too naive, too trusting and, perhaps, too much in shock/denial. All I could see was that my daughter—prior to recieving her batch of recommended vaccines at 15 months—seemed fine. She was walking, saying a few words, she was easy to take places.
When my daughter was 14 months old we took a trip to Maine. We flew in an airplane, we put a couple hundred miles on a rented car, we stayed in a variety of places, visited many relatives and ate in many restaurants. The only thing my husband noted in his daily journal about our daughter's behavior was that she was getting to be rammy in the car—not uncommon for a newly walking toddler.
At fifteen months (10/95) she recieved the DPT, the MMR and (I don't have my records in front of me) but also one or two of those ones that begin with H like HepB or Hib or both. (I do have these records and will get them for you if necessary but don't want to lose my internet connection while I hunt for them.)
At 15 months was when everything changed. My easy-to-travel-with child refused—screaming and kicking— to go into a vast number of places for reasons that were mysterious to all. She began toe-walking and spinning and, as my husband noted in his journal, suddenly became quite a handful. Other people singing or dancing drove her to hysterics, she desperately tried to control her environment. And, perhaps most significant of all—in concert with Dr. Andrew Wakefield's research in this area—she became chronically constipated. This was all definitely within two weeks of her vaccinations and probably within one week. Did our provider fully warn us about the risks involved in vaccinating? Of course not. The MMR, in fact, was considered "safe."
At three my daughter was diagnosed with Sensory Integration Disorder and that diagnosis slowly evolved into some say PDD some say Asperger's Syndrome. In any event, she is on the autistic spectrum.
To answer the question of how all this has affected my family is, perhaps, too enormous for this space. We simply live a life that is different than families who don't have special-needs children. We don't do birthday parties, we don't travel, we don't go to restaurants, we don't freely listen to much music, we don't eat wheat, dairy, sugar and a whole list of other foods, we don't have more than one or two visitors in our home at once, we don't use any kinds of fans, we don't trust doctors—especially pediatricians. What we are able to do—because we must—is spend tons of time and money working to reverse what was done to my daughter in the name of "good health." My daughter is a joy who has taught me more about life and being human than I might otherwise have learned. With nutritional and child-led therapy, she is making incredible progress. I no longer have vaccine nightmares like the one where I was walking up a steep hill and then was jumped by two "thugs" who tried to inject me with black ink, or the one where I walk into our former pediatrician's office and run around trying to find my screaming daughter.
We have moved on. Since becoming aware of the autism/vaccine connection we have also chosen not to vaccinate our younger daughter. What scares me is that, with all our knowledge, another former pediatrician (we switched three times) tried to persuade to vaccinate our younger daughter anyway. She rolled her eyes at my connecting the MMR injection to my older daughter's challenges and said: "If you ask me, that had nothing to do with it." I wonder how freely pediatricians would dispense vaccines if they were held accountable for all children who developed autism spectrum disorders while under their care.
My daughter recovering from autism is named Anna. Her birthday is 6/30/94. My name is Marisol ___________. You may call or e-mail me with any questions [PHONE NUMBER AND E-MAIL ADDRESS WITHHELD UPON REQUEST] Please let me know if there is more that I can do, even though I prefer to look forward not backward.
All the best,
more about Asperger's...
I read your daughter-in-law's story and I have Asperger's Syndrome. I had it since I was a baby. I wasn't diagnosed until I was 30 years old. It was undiagnosed as a specific learning disability when I was younger. I had social problems throughout school, couldn't attend any parties, go anywhere without my family there, drifted away from family activities when I reached my teenaged years, and avoided social interactions. I was bullied because I was overly sensitive and frustrated. I get frustrated quickly and am unable to tell anyone how I feel.
I'm writing a story about my struggles with Asperger's Syndrome and how I overcame some of my obstacles. This is my method of talking: emailing people. I cannot speak verbally well. If I do, I don’t have an emotional voice. I'm a late learner and now I'm learning body language and emotions. Everyone has their learning pace. I'm a slow learner and have to have written instructions because I cannot grasp verbal instructions. I do have an extended vocabulary.
Just don't give up hope on any challenges. Asperger's Syndrome doesn't have a cure, she can only adapt and encourage her. My parents pushed me and encouraged me through Asperger's Syndrome. Adapting and accepting Asperger's Syndrome. I view Asperger's Syndrome as a part of me. It is me. I cannot change something a part of me.
|Click here to read excerpts from my latest book, Caring in Remembered Ways. This book celebrates compassion as a way of life. It is for caregivers and caregetters—all of us, evergrowing, who live with great heart but sometimes feel forsaken.|
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