Feeling like an idiot
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Ugh! Okay, I just got off the phone with the pediatrician's office. Here is our history with them... December - I called... I think my son might be autistic. "Does he sit in the corner and rock?" No... "He's not autistic. But if you really want to, call EI for an evaluation." @@ Two EI evaluations later, we finally get to see the Autism Specialist who consults through EI. She met with us twice, and yesterday told me that Jair is definitely autistic, but high functioning. Okay. I called the pediatrician's office just now, and asked to make an appointment with our pediatrician. The nurse asked WHY. I told her about Jair being diagnosed with autism by this psychologist, and that we'd like to see if there is a medical cause behind this clinical diagnosis... I'm put on hold forever. Then the nurse comes back and starts asking me questions, writing down everything I say. @@ She acts like my request is absurd, and like I'm lying about the whole autism business. What exactly did I want?? Yuck! I hate feeling like the stupid, paranoid parent! I think I would had just said--"I have some concerns about my child's development and would like to talk to the Dr about it". They don't need to know exactly what the prob is. Tell them "too many to say". If they give you the run around---ask to talk to the nurse. Why are you speaking with a pediatrician about a neurological/cognitive disorder? These guys are trained in taking temps, weighing and measuring, bringing down fevers, prescribing antibiotics and, basically, sending you to a specialist for everything else. They are like mechanics for children's bodies. Neurologists understand the brain, psychiatrists understand the mind. Pediatricians just understand the body unless they are DEVELOPMENTAL pediatricians and THEN they understand development because they've specialized in it. I take our son to the pediatrician for physicals, to sign school forms and on the RARE occasion when he is actually physically sick. OTherwise, we depend on our psychiatrist. None of the schools around here would accept a Pediatrician's diagnosis of any autism spectrum disorder even if the pediatricians around here were willing to GIVE a diagnosis. They aren't. They ALL send the parents to a specialist, either a psychiatrist or neurologist. Not only is your pediatrician not actually qualified to diagnose autism, he seems like the kind of doctor with a "God Complex." That only GOd is better than he is and that he needn't waste his time speaking to the likes of a measly mother or ever explaining to a creature that lowly anything about WHY he says what he says (get the feeling I can't stand doctors who think moms are beneath them?) If I were you, I'd get a different pediatrician. Or, at least, DO NOT SPEAK WITH HIM ABOUT AUTISM. There are only a couple of issues that COULD underly autism and both are genetic. If you want to check this out, make an appt. with a neurologist to get a genetics test done. Your pediatrician can't do that anyway. YOu are NOT, NOT, NOT "a stupid or paranoid parent." It's this jerk of a doctor who gets a kick out of making your feel that way. Fire him! My doctor is great about this but will happily refer out if she is not comfortable. For blood and genetic testing I would see a neurologist. A developmental pediatrician is a good source too. Don't feel too bad. Sometimes they really don't know. How many regular teachers do you know that are well versed in autism and teaching children with autism? I don't know many, that is because they just don't see it often. See a specialist and save the pediatrician for ear infections. Sorry, that is just my opinion. I would like to add though, that not all doctors are like this. My ped is the one who referred me to EI and was very interested in Liam's progress. She said she thinks he will be dxed PDD-NOS and even had a nurse come and observe him so they know what to look for. She also immediately referred me to a ped neurologist and simply said that she is not an expert in autism. Ugh, well, still feeling weird about it but not knowing where else to turn.The autism specialist told us to avoid the two developmental specialists on our insurance plan. I guess I could ask her for a good neurologist... I kind of wanted to stay in good relationship with the pediatrician, and let him refer us to places even though our insurance doesn't require referrals. At least I've found some great local support groups! Time to call them! Like my new pics?   I'm sorry that your ped is like this, I am a lucky one, My ped was the one who TOLD US to go see a neurodevelopemental doc for my son. If it wasn't for him we'd have been alot later in figuring out my son has ASD. My ped happens to be a former special edu teacher (?crazy huh?). He has a HUGE heart for special needs kids and has a lot in his practice b/c of this. He never hesitates to refer us to another professional when appropriate and I love that he helps keep me grounded...reminds me that some of my ds behaviors are normal behaviors exaggerated. Office staff and nurses can sometimes be rude, but it sounds like your ped isn't very helpful either hope things get better for you Our pediatrician is humble. She's like an old country doctor. She would NEVER presume to try to inform me about autism. In fact, she often asks ME if I would speak to one of her patient families. I have heard more horror stories than good ones, though. I dont' EXPECT a pediatrician to know about autism -- that is not what they studied -- but I expect them to be honest and don't PRETEND to be an expert when they're clearly not. Isn't there another pediatrician on your preferred provider list whom you can take your kids to when they have a tummyache? That's what a pediatrician is for. BTW, are there any child psychiatrists on your preferred provider list? Where does your autism consultant take HER child?Your new pics are freakin ADORABLE!! Love the cat too! I'm sorry to hear that you are going through the same thing as me. I try to make an appointment and they tell me I have to talk to the doctor first ... that I might not have to come in... I don't understand why I shouldn't go in and talk to the doctor about the test they want us to do. This was our new doctor... I talked to the old doctor today and might go back to her until I can figure out what I should do. I wish there was a place to find out what doctors would like to see special needs kids. I also have a child with down syndrome so having a good doctor is important. Cute pics! Wow what a day you have had! I agree with others you need to see a ped. neuro. ask the ped to refer one that way everyone feels as though they are in the loop! My ped. is I think he could quite possibly HFA, he never looks me in the eye and says "interesting" over and over! However I have great faith in him! I am confused is this Jair's first dx? Is he the second child dxed in your family? Ok well, good luck! let us know the turnout!Traci, I feel kind of crazy, actually. Yes, this is Jair's first ASD diagnosis,
and neither of our girls have had any diagnoses. @@ Briana has had a few tests through the school district, but they said she was "fine" except for processing delays and social immaturity/isolation which they attribute to her age. I'm just suspicious of her, that it's more than that, because she stopped talking from age 1 to 2.5, and was such an odd toddler/preschooler. Jair has been the strangest, which was what led us to researching autism in the first place, a few months ago. Lia is getting more worrisome, even though she's still so young. Flapping, screaming, not learning any gestures. Now her eyes are looking weird, not tracking, and her protruding tongue, and crawling/walking away from us all the time. I just think it's all freaky, strange, and I'd like to know what's going on, and form a plan of treatment/attack. If it's "nothing," and I'm just being paranoid, well maybe so... but I'd at least like to be getting some good evaluations.  Holly -- It's NOT nothing. What you describe with EACH child is on the spectrum behavior. Whether they each can get a diagnosis or whether the girls will just be part of the "shadow syndrome" group (the group of kids who don't qualify for diagnosis but still have issues in the ballpark) is unclear. Has the school actually EVALUATED Brianna? Ask IN WRITING for a full special education evaluation. The school cannot give you a diagnosis, but they can test in all areas to see where Brianna has deficits. Clearly, she will score below average in the social skills area. They MUST test her if you submit a request in writing unless you submit, in writing, a letter rescinding the request. If not, they are out of compliance and you can complain to state ed. About Jair and Lia -- I have a couple of questions: 1. Can your insurance refer you to either a pediatric psychiatrist or pediatric neurologist? 2. Which pediatrician does you autism consultant use? 3. Has Lia been seen yet. I thought you were taking her somewhere. I don't have any advice, but the new pics are adorable. :)(Thanks for the compliments about the pics!) Tzoya... 1. I should be able to find a pediatric neurologist under our insurance, but I'm still asking local autism families for a reputable one. 2. We like our pediatrician so far, it's just his fellow group-peds who have bothered us, plus his office staff. We were impressed that he ordered a very good metabolic screening for Lia (returned normal). He's been hesitant to talk about "medical reasons" with Jair, until after a few months of therapy. But we've been caught in a maddening loop, cannot get therapy without further diagnosis. Now that we have the autism diagnosis for Jair, I'm hoping he will suggest a good neurologist. 3. Lia was seen by the same autism specialist who diagnosed Jair. I was surprised the AS didn't seem concerned about Lia, because Lia is in many ways worse than Jair, although of course younger. The AS had read my descriptions of Lia, and said she expected her to appear worse. I don't know what she was expecting! Lia tuned us out and tinkered with some toys. The AS acted like this negated the other concerns?? We didn't fill out any parent questions, she just observed her. Her main concern was Lia's protruding tongue and lack of visual tracking. She said we should evaluate her at 18 months. I honestly think she (the AS) was tired and hungry at that point. She'd been meeting people all day without a lunch break and Lia was her last consult. @@ I'm going to start a new thread about Briana. [QUOTE]Now that we have the autism
She, too, before becoming a doctor, sensed something "wrong" with Caden's father when he was a child. She thought he was autistic. His parents took him to a doctor who told them he was not autistic...and all these years later now his pedi aunt, and another aunt who is a teacher (as his is mother) say they see in hindsight that Caden's dad was, and is, on the spectrum... slueth, cute little sweet peas! just wanted you to know it! |
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