I have been emotional, sad and angry since Monday. Monday morning was an appiontment with a new pediatrician for my boys. It was our first appointment with this doctor so it was a bit of background on us to the doctor and a well-check for each boy. Seems very normal and usual for a day....but I am still recovering.
I searched for this doctor for months. It has been almost a year and half since either of my children has seen a doctor. The old pediatrician had no empathy or even a reaction that Brody was diagnosed. This child that she has treated for over 3 years - since his birth - did not care that a life-altering diagnoses was given to my son. Since then all questions and concerns about Brody were answered with a a simple statement of, "I don't know anything about that but I can refer you to someone who might" - might being the key word! Autism effects 1 in 91 children and she does not know much about it. In addition, all she has ever been able to do is throw antibiotics at both my sons. As a pediatrician she saw no harm in giving a lot antibiotics in too short of a time. 13 antibiotics in just over a year and 3 of which were misdiagnosed ear infections. Ryan was no different, newborn to 6 months old there was 5 ear infections and 5 antibiotics. Their ear infections only stopped because I ASKED for the Eear Nose and Throat doctor to put tubes in both boy's ears. She only spent a few minutes with my kids at any of the appointments. Even after she was told Brody was diagnosed with speech and social delay (which automatically mades him at risk for autism) she was no more inquistive about him. After the last misdiagnosed ear infections last summer (2009) and 3 antibiotics in less than a month, Brody changed for the last time. He started doing self-stimulation and his behavior got totally out of control. The antibiotics were ripping up his digestive system and his brain was reacting (for those who believe in the gut-brain connection).
Needless to say I was done with her. I needed to find a doctor who would take both our private insurance and Brody's state insurance. Oh and that doctor needed to respect and tolerate our feelings on vaccines and antibiotics. I did not need him or her to agree but tolerate. I was referred by another parent of a child with autism to this doctor - the one I went to the appointment on Monday. I couldn't delay it anymore. Not only was the state insurance not happy Brody was 3 months behind his 4 year well check but I needed "prescription" for a couple things (not for medication). Weirdly enough the state requires a "script" from a doctor. Brody need them for feeding therapy and an augmentative communication device.
I think the thing that was strange about this appointment was this doctor was both surprisingly accommodating, understanding and tolerant in many ways and at the same time not very sympathetic and disrespectful in how he talked about certain things. Jake and I were made to feel stupid for trying the gluten/casein free diet, that vaccines have anything to do with autism or that we have Brody on supplements. He said if it makes us feel better but he has never seen evidence that it has helped. On the positive side, and vastly difference than the last doctor, this doctor knew things about being a doctor to a special needs child. He told us if we ever have to call in after hours tell the triage nurse right away that I have a special needs child and that I need to speak to him directly. He knew about Brody's other doctor and that they are called DAN (Defeat Autism Now) doctors. He was aware of what supplements other kids with autism often are on. He knew how many parents of these children are concerned about vaccines so he will allow us to take our time. He said he would like to stay in the loop with us, the parents and Brody's other doctor.
I was happy to finally find someone who I could, in a way, appreciate and feel the difference in his approach to Brody verses any other child. Also that he needed to keep an eye on Ryan's development since siblings are so likely to have autism.
The appointment made me even more angry and upset by the old pediatrician. Plus it was yet another reminder that I have to grow thicker skin. I know what most doctors and the medical community think about cautious parents like me and others, especially when a child with special needs is involved. The thing that hurts is I am respectful to others. If a woman makes the choice to give birth at home I don't tell her the statistics and stories about mothers or babies who die in those circumstances. I say good for you. You have probably done your homework and are informed. It works for you. You have made that decision based on what is right for you and your family. I do not say anything about another parent's choice of diet even though that impacts that child a great deal. Instead I would think to myself, those parents made that decisions cause they feel it is what they should be doing for their family. These are freedoms that we all enjoy as citizens of this country and as parents. I have an alternative form of treatment for Brody that has a chance of helping him a great deal. I also go with the mainstream methods of therapies and methods of treating Brody's autism.
Doctors, researchers and the medical community forget that I am a parent. I know my child better than anyone else. I know his history. I know it like my own and even better. I am also the mother of a child with autism. I am the mother of a child with special needs. This boy was not born this way. I know it, Jake knows it, the Lord knows it and anyone who was around Brody from the time he was born to the time he was 1 year old knows it too. I know when it happened cause he changed and was no longer the child he was before. I cannot explain it with science or show you a chart of his body and tell you exactly what happened. These are things I feel in my soul, my mind and my body - everything in me.
With autism being a mystery to the medical community (as they fully admit) they cannot give a definitive answer in regards to what causes autism but they can sure as hell tell any parent that they are fooling themselves to think they have answers...cause we only do it to make us feel better!
I am grateful for this new doctor in many ways. For the other ways I will just smile and nicely nod my head and occasional just say, "no thanks".
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