I’ve been going to the Stanford Autism Support group since December, and I am SO glad I started going! Support groups have been so important for me to connect with others. As someone said, it’s not a group that anyone wants to be a part of, but it’s nice knowing parents are going through similar situations with their special needs children. I always walk out of the support group with new ideas, websites to check out and interesting stories.
There are usually about 20 parents, sitting around a great big table. We start out the meeting briefly going around, introducing ourselves and speaking a little bit about our child and what we hope to get out of the meeting. Sometimes we break out into two groups of parents of younger kids and parents of older kids. In January, I was so lucky to have heard D’s (using her initial to ensure privacy) story. Note that at this time, we had no idea Jackson or Misha and I had Lyme. She shared with us her journey with Lyme Disease. She battled Lyme Disease, going so far as traveling to India to do stem cell treatments. It was the first time I had met someone with Lyme Disease. She looked fantastic, healthy, and spoke eloquently. D also has an 8 year old son who she and her husband helped recover from Lyme Disease. Like me, D transferred the Lyme Disease in utero to her child unknowingly. She spoke about taking her son to the East Coast to see the renowned Lyme Doctor, Dr. Charles Ray Jones. With a simple mix of antibiotics, Dr. Jones brought her son back to a healthy state.
I saw D again last night briefly at the meeting. It was announced that we would be breaking up into our two groups right at the beginning, so when I saw D get up to go to the room for the older kids, I dashed over to introduce myself and briefly tell her Jackson’s story. She immediately went into her wallet, grabbed a business card, gave it to me and said we needed to talk. I emailed D this morning and she immediately called me! She said that getting good information about Lyme Disease is really from word of mouth by others who have gone through it. I am so appreciative of D’s willingness to share her experiences with me. It’s a favor I plan to return to others dealing with this mess. D gave me lots of resources and things to check out. I’m excited she told me about a Lyme Disease Support Group at El Camino Hospital in Mountain View. It’s next week, and I know it’ll lead me down the path to discover even more information and leads in our journey recovering Jackson from Lyme Disease.
At Stanford last night, I shared our revelations about Jackson and Lyme Disease. Everyone (except for one family who is also having their almost 3 year old son tested for Lyme by the same doctor) was shocked when I explained the Lyme-Autism connection. I was happy to explain what I had learned and answered any questions I had answers to. The Lyme-Autism connection is such a new phenomenon and I want to get the word out there to other parents. From the website, lymeinducedautism.com, they say, “Autism now affects about 1 out of 100 children. How many have an underlying infection like Lyme disease that is causing autistic symptoms? Many physicians and studies now show it could be as high as 90%.” It makes me uneasy to think that parents of “autistic” children are only pursuing behavioral therapies when, in reality, their children are actually sick and need to be healed from the inside out.
Help me reach other parents by passing this blog on to others who might learn something from Jackson’s story. I wish someone (other than D) had told me to get Jackson tested for Lyme. I wish someone had told me that the symptoms of Lyme and Autism go hand in hand. I wish I had tested Jackson when he was an infant to begin treating him before going through a year and a half of behavioral therapy that produced minimal advances. I wish, I wish, I wish. All I can do now is move forward and use Jackson’s experience to educate others. Please, please, spread the word about Lyme Induced Autism!