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Sep 18, 2007 9:15 PM by
jtlahabra
Hi Jenny/Holly:
First, I would like to thank you for sharing your stories and well as giving us HOPE b/c I have not seen many stories that are. My son was diagnosed November 2006 w/PDD-NOS or mild Autism. I know what you were both saying in regards to the "Mommy gut instinct" b/c I too had thought there was something wrong with my child. He would not react to his name. He would stare at the ceiling fans and lights. I would look in his eyes and it was almost as if I was literally looking right through him. His former pediatrician (although a very nice lady) always told me that each child develops differently and to not worry if he hasn't reached those milestones. When he was 6 mos old and I would look in my child's eyes and say to him "Mama" for him to repeat back to me.... he would try and I saw his frustration as he would try to mouth it to me and he would begin to cry b/c he just simply couldn't. We went to his 2nd pediatrician who had us begin ST as well as OT. He began developing in regards to OT, but still not in ST. His ST recommended that we see a developmental pediatrician who then gave us our diagnosis. I learned after the fact, that his ST/OT had thought all along that our son did have Autism and they had advised his 2nd pediatrician of this. His 2nd pediatrician told them that they cannot legally diagnose and that it was still quite early and to not worry us as parents. So, we're thinking the whole time that our son possibly had Autism and surely his ST/OT would tell us this if they agreed. We did not realize the legalities involved. MY POINT BEING, YOU MUST BE YOUR CHILD'S ADVOCATE AND TRUST THAT GUT INSTINCT! Early intervention is truly key on this road to recovery. After we recd our diagnosis, nothing really changed in regards to therapy. We just had that diagnosis in hand which assisted us in regards to receiving "unlimited therapy sessions due to medical necessity" from our insurance company. He has been in ST as well OT since he was 18 mos old. He turned 3 yrs old this past July. I have met such wonderful people who truly are in the therapy industry b/c they want to help. Not to say that there aren't bad apples out there. I've been fortunate enough that my son's ST/OT are truly my angels. My son is now attending a state-funded special needs Pre-K program provided by one of our local public schools, as well as continued private ST/OT. He is actually in an ABA program which has started this year, which is specifically for children w/Autism. I now meet my other angels, his teacher and his paraprofessional. He is absolutely thriving in school. He attends 5 days/week for 1/2 days and may soon attend full days. So, my little man is definitely showing signs that he is capable of being independent and I grow even more hopeful since I've seen you two on the show. What exactly did you mean in regards to a "window" or to crack the wall? In other words, am I on that right track to recovery? I did attend an Autism 101 seminar in which they did have a representative for the gluten-free diet. I have not had my son tested for allergies. Would you suggest this first? His developmental pediatrician did not believe in the diet avenue. Thank you again for being our voice. B/C of your position, we are truly educating all citizens who will hopefully educate their children as well. B/C they are the ones who will be attending school with our children when they too are mainstreamed with the "typical population" in the public school system. Sincerely, Beth Sherwood
Dear Jenny & Holly,
Thank you for appearing on Oprah's show today and giving hope to millions of families. You have expressed to those who don't know what autism is like, "a crystal clear view". My daughters work with children with autism. They work with the United Cerebral Palsy organization giving respite to families that need support. My oldest is now a junior therapist with C.A.R.D. (Center for Autism and Related Disorders) in the Orange County area of California. She will be receiving her BA soon and will be a full therapist in this field. I am learning through their experiences although I have an experience that is somewhat similar. My oldest daughter was 13 when she appeared to have a total "breakdown" (psychotic) out of the blue in 1999. Through my "gut instict" I researced her behavior and thought it might have been the result of her hepatitis booster. I know its not the MMR but it still is a vacination. I've always wondered it it is the antigen given with the vacination that causes the problem or interaction. But I researched just as you have done these last years. There is always something new! You mentioned today about gluten free diets. I, as a baby, was diagnosed with silac diease. I should be following a gluten free diet. Should my daughter be on gluten free too? I need to speak with her about this. Believe me she is wonderful now but it has been a long road for her and me. She has been diagnosed with a "mood disorder" and takes medication. Could removing gluten from her diet help her too? I wonder. It never stops when your child has been ill. You'll always look for the answer but they do get better. Thank you again and I look forward to reading your book. Nancy T. More Like This
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