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One Mom's JourneyFinding Answers For Her Daughter With Developmental DelaysBy H. Anne DowningMy second daughter had a bumpy start in life, and so my life was bumpy too from that point on. I was a mom that fully trusted doctors. I had no reason not to. So when my ob/gyn recommended a flu shot while I was pregnant, I accepted it. Shortly thereafter. my daughter developed a heart arrhythmia in utero and was born a month early. Strike one for trust in doctors. She didn’t want to wake to be fed. I remember really struggling to feed her, and having nurses come in and take all her clothes off and press a cold rag on her to try to wake her. She would only wake for about 5 minutes at a time, and that wasn’t long enough to feed, so I had to find a bottle with a fast nipple and pump my milk. Around the 2nd or 3rd month, she started arching her back, throwing up her arms, and wailing during feedings. The pediatrician decided it must be irritable bowel and asked if that ran in the family. No, it did not. He insisted I change to a non-allergenic formula because she was having trouble with my milk. So I went home, googled and found that my daughter had reflux, although it wasn’t visible (no spitting up). Strike two for trust in doctors. A pediatric gastroenterologist confirmed my beliefs: it was reflux. Come the 10th month and my daughter wasn’t sitting up. My first daughter had sat up at 6 months. The pediatrician (our second, as we had moved) said she must just be a late bloomer. By the 12th month, still not sitting up. The pediatrician was sticking to the late bloomer theory. Strike three for trust in doctors. I googled and found information about cerebral palsy and insisted on seeing a pediatric neurologist for an MRI. The neurologist and other specialists have given us labels over time such as borderline cerebral palsy, dyspraxia, PDD-NOS, severe hypotonia, central auditory processing disorder and more. And so I set out on a quest for further knowledge. What has worked for me over time is actually relatively simple to describe. I read and I listen. I read anything and everything. I even read viewpoints that I don’t agree with. I read books. I read magazines. I read blogs and websites. I read studies. I attend seminars. And I listen to autism radio. Over time, I have gathered a circle of friends and experts with whom I discuss my thoughts. My husband is key in that circle. He’s the ultimate devil’s advocate but he’s my greatest support. "I read and I listen. I read anything and everything. I even read viewpoints that I don’t agree with." One of the first “studies” that I came across was a piece comparing mercury poisoning to autism. My jaw dropped open when I saw the table of comparisons and realized my daughter had almost every symptom. Somewhere between ages 3 and 4, my daughter was diagnosed with PDD-NOS, a type of autism. I found a terrific autism radio station that was just starting out and I took notes when I listened to each radio program so that I would remember. Then AutismOne Radio started archiving all their shows and that was a big help because I could replay and listen at my own convenience. Yahoo groups became a lifeline for me. I must have over 100 subscriptions at this point. I subscribed to autism groups in my state. I subscribed to biomedical autism groups that support healing autism with supplements and safe therapies such as sauna, homeopathy and hyperbaric oxygen. I subscribed to groups that would help with educational matters such as IEPs, the politics of autism, vaccines, and behavioral therapy of all different types. I bought many books, used and new, from sites such as Amazon and Half.com and I started an excel spreadsheet that listed out books that I read and books that I still want to read. I also spent date nights with my husband sitting at Borders or Barnes & Noble, having tea and reading from their selection of autism books. I also have asked my local library to purchase specific books. I started collecting website links, and saving them in my “favorites” so I could always find them again. I subscribed to all the newsletters. And then I discovered blogs, and subscribed to a ton of blogs using Google Reader. Some of my favorite websites are TACA, Generation Rescue, ARI and NAA. I subscribed to a few good magazines. My favorite right now is Autism File. Spectrum is another good one. I made a notebook so that I could keep track of medical information and therapists and development and such. I then found online systems that worked well too such as iAbida and Charm. When my daughter was young, I found I was going to at least one meeting a month to learn about all sorts of topics, from Sensory Integration Dysfunction to Braingym to IEPs to behavior. I also found a wonderful local support group – a mom invited everyone to her house to chat about any subject and have a little wine and dessert once a month. That was much-needed, and absolutely heavenly. Now 5 years later there are so many more meetings that I’m interested in, I could probably find one 2 nights a week! But I don’t go out that much, it’s just as important spending time at home with the family. I did find a nice substitute – the webinar. This is a web conference, and usually they are at 8 or 9 o’clock at night, when the kids are already asleep. One group that offers a lot of webinars lately is Great Plains Lab. The other interesting option that Great Plains offers is the Autism Action Plan. I haven’t used it but it certainly sounds interesting! If TACA has a local chapter in your community, run don't walk to your first meeting. Among many other goodies, you'll have access to trained chapter leaders, an experienced mentor assigned to you, the lending library and the gotta-have-it Autism Journey Guide. Some of the great conferences offered nowadays are Defeat Autism Now (DAN!), Autism One, National Autism Conference and US Autism & Asperger Association.
These are some of the things I have done over time to keep myself well-informed. It takes a while to get up and running with all this, but it has definitely been worth it for me. I always feel hopeful, and well-informed. E-mail me if you have questions at This e-mail address is being protected from spambots. You need JavaScript enabled to view it .
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