Home School Life Journal

Home School Life Journal ........... painting by Katie Bergenholtz
"Let us strive to make each moment beautiful."
Saint Francis DeSales

Autism Awareness


There are two aspects to autism awareness. One is that many do not know the behaviors associated with autism, and therefore can mistake these behaviors for discipline issues and the such. My son has been a victim of this, so I know it first-hand. Here is one of many lists out there of these behaviors.
The second aspect of autism awareness is much more controversial. I can only tell you my experiences. When my daughter was 18 months old and she was not speaking at all, I questioned my pediatrician about it. He referred her for speech and occupational therapy and to Johns Hopkins because of her persistent gastric reflux. At 18 months she often could not keep anything down and would cry for long periods of time unless she was held with an arm across her stomach just under her rib cage. She could only sleep like this or in a baby swing. At Johns Hopkins she qualified to be entered into a trial for Bethanocol for her reflux. We were so pleased that it helped her reflux. She became much calmer and happier. We were surprised when we came back for our last follow-up appointment to find out that the study determined that Bethanocol did not help enough people with reflux to merit it's use. It had cured her reflux totally. Meanwhile I had my first son, Alex. I put Katie in a preschool in hopes that it would help her language, social and behavioral skills. The preschool teacher was wonderful with her, but Katie still dove under the tables in school when she became overwhelmed.  She then started public school Kindergarten. She was fortunate enough to have a wonderful teacher, but she was unable to handle Katie's behavior issues and the needs of the other 25 students. She requested that Katie have an one-on-one aide through the school system and meanwhile I came to school with her acting as her aide and helping her through her day. By this time my son who had spoken a few words, suddenly retreated into a glassy-eyed world of silence. With each doctor's visit he seemed to get worse.  He was enrolled in the public school's Infant and Toddler program to help his speech. As part of the process of getting Katie's aide, she was sent to DuPont Hospital for Children for evaluation, all paid for by the school system. She was seen separately by five different psychiatric doctors. Each of the doctors gave a different diagnosis (anxiety disorder, global speech disorder, PDD-NOS, Landau-Kleffner Syndrome) and each suggested a different medication, some of which had side effects of speech impairment. At that moment I realized that I was going to have to take control of the situation and not rely so heavily on doctor's and teacher's suggestions. I began researching, not so much to find out what it was they had, but to find out what I could do for them. From my background as a Addiction's Counselor, I knew how to write Treatment Plans. I began forming one for my daughter of intense speech and behavioral therapy. Meanwhile, my son who was practically mute by this point began treatment through the school system of Applied Behavior Analysis. The school system began paying for people to come in my home and administer the program and for someone to oversee it periodically. Then they withdrew the program and I had to find my own volunteers at the local college and administer the program my/self. My husband and I would also do therapy with him on a daily basis. He would work the hardest for Cheetos and Doritos, so he had his fill of them every day. He improved so little and every time we felt he had gained a skill, he would just lose it and we had to start over. I was then told by a friend about possible connection between autism and vaccinations. By this time my second son was born and he had already gotten the first round of shots. I went to a lecture by Dr. Wakefield and Dr. Stephanie Cave and listened to what they had to say, and what they had to say made a lot of sense. I decided right then to stop vaccinations on my son Sam. We had to change pediatricians as our doctor refused to see us if we did not vaccinate. We now drive an hour away for our pediatrician. By this time Alex was becoming so violent, I was afraid for his siblings and the thought that perhaps we might have to put him in an institution first crossed our minds. We learned about the gluten and casein-free diet and we cleared out all of our cabinets and stocked them with the new foods. We realized that our feeding him daily snacks of Doritos and Cheetos was only hurting the situation and was perhaps why did not retain the skills he managed to learn. Once on the diet, we began see immediate improvement with Alex's behavior and Katie's remaining digestive issues. I no longer had to use the body hold for Alex that I had learned when I worked for the prison system. We had hope. They both continued to improve with intensive therapy. By this time we had severed all connections with the school system (another story) and were on our own. Alex was tested for heavy metals and was off the charts in his mercury levels. Under a doctor's supervision, we began chelation for Alex's heavy metals. We began giving him high doses of vitamins and enzymes for digestion. We also gave the enzymes to Katie, who still had residual gastric issues. It was like an onion, each time we removed one level of things that were holding him back, it only revealed a new layer. By the time he was seven, we decided to try him in the school system again. We moved into a school district we liked. They assigned him a one-on-one aide. About a year later, we began noticing that it seemed as if he was hallucinating. His doctor prescribed him some medication for Juvenile Schizophrenia and he immediately became more responsive and the hallucinations began to cease. We decided not to send him to public Middle school and brought him back home to be homeschooled. Katie, who was now about 11 was re-tested by the school system's psychiatrist and was determined to "no longer qualify for the diagnosis of PDD-NOS."
Alex is still functionally mute, but he is much happier and is able to take part in family activities at his own level. Katie was later diagnosed with Epilepsy, but no longer has the gastric issues she once had. I later found out that  Bethanocol is now being used as a treatment for autism. Perhaps she just happened to get what she needed at the right time. I know that there is a lot of controversy surrounding vaccines, and that the media and the medical field consistently support that there is no connection between them and autism or any connection between autism and gastric issues (which is what Dr. Wakefield was suggesting.) I can only tell you my experience. I know that there was definite gastric issues in both of my children on the autism spectrum and that they both improved by treating those issues. Katie, fortunately, received stronger medication early. Perhaps that was in some way the difference between the recovery levels of the two of them. I have not vaccinated any of the other three children (except for the first round with Sam) and they do not have autism. I know this is not enough proof to submit as any sort of evidence, but it is enough evidence for this mother. I offer this not as a means to become controversial and to enter into debate. I only offer my experiences as hope for a mother who is searching for help for their child. If you are searching, this might be a good place to start to learn about the possible medical interventions.


No comments:

Post a Comment

Thank you so much for taking the time to comment. It means so much.