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May 30

Pediatrician

Recently both my boys had an appointment with a new pediatrician. The appointment made me think about how I wanted to express on this blog some tips to other parents or just other readers.

A good pediatrician is a powerful tool for a family that has a child with autism. Toddlers, young children to even teenagers, a family doctor is an essential part of a group that enables parents to find the tools and resources to get the assistance needed.

This was our 4th try for a pediatrician for my children though they are only 6 and 4 years old respectively and it isn’t because we’ve moved or anything. I don’t feel like I ask a lot of my children’s doctor. I just want a professional doctor who cares about the children that are his patients. I want that care to be an all-encompassing view of that child from physical health, mental well-being, educational to family/home life, nutrition, development, etc. Though this sounds like lots of criteria, it really contains the treatment a doctor provides any patient.

A pediatrician needs to keep up with the development of a child so that when or if there is a concern of delays or risk of autism the doctor catches it. As a parent we do not always know everything about the development of a child, especially when the child is our first (as Brody was). A pediatrician can be a connection to the necessary help and, hopefully a give more knowledge. A capable and caring pediatrician can direct parents in the maze that is state services, evaluations, appointments with specialist, etc. More so than typical functioning children and teenagers, those with autism need a watchful eye in many areas, not just behavioral or mental. In recent years the mainstream medical community has accepted the fact that many with autism have associated medical conditions; from GI conditions, sensory processing disorders, seizures, sleep dysfunctions, etc.

My son’s first pediatrician was always sort of stony and distant. Friendly or outgoing isn’t what I needed so I didn’t think anything of it. The visits were always rushed and very short. Any concerns I would bring up were quickly dismissed without much conversation or explanation. I realize I am not a doctor but I was a first time parent so maybe a little more time or attention was needed. I was the one who brought up a concern for Brody not talking at 18 months. By ‘not talking’ I mean he had not even said his first word. The doctor said it was probably nothing and he could just be a late talker. When I wouldn’t let it go she said, “If it makes you feel more comfortable” she could request an evaluation by early intervention. That evaluation found a delay of 50% in two development areas of social and speech. These results were when my son first started receiving services through our state’s agency called the Division of Developmental Disabilities. Each time after that we were back at the doctor there were only ever an additional question in that topic such as, “how is Brody’s language”? I was also the one to suggest that perhaps 13 doses of strong antibiotics in a years’ time is too much and perhaps Brody needed to get ear tubes instead of just dealing with ear infection after ear infection. Again, I had to hear, “well if you really think ear tubes will help then I can refer you to an ENT”.

These happenings with Brody’s pediatrician just encouraged me to do things on my own. I just went to the ENT with anything ear related. I managed Brody’s any development concerns by utilizing the resources I was now connected with due to the DDD services Brody received. The straw that broke the camel’s back with this pediatrician was when I told her Brody’s was diagnosed with autism there was NO reaction at all. I didn’t need crying and I realize that autism isn’t her specialty but she had been my son’s pediatrician for almost 3 ½ years and this diagnosis was pretty huge. No reaction, absolutely nothing, no follow up information, no suggestion of books to read, not pamphlet or list of resources she could suggestion. When I asked some questions she just remarked, “I don’t know much about autism”. The rate of autism at the time was 1 in 110 at the time and this was the conversation a pediatrician was having with a mother of a child newly diagnosed!!??

The other 3 pediatrician can be summarized a little easier by bad bedside matter, judgmental, refusing to help in referrals, write letters asking for a necessary and not accepting secondary state insurance. The lesson I learn was me and my husband are the parents and as such we needed to be the ones to make final decisions regarding his health care, we needed to educate and find resources on our own. In the end it helped me feel and become empowered as the truest and best advocate for my son. Then as I go searching for the right pediatrician it is different than before. I know I need to find the doctor that fits our family cause our kids deserve and need a good doctor, but I am not putting so much in their hands because I know my role as a parent!

I hope sharing this experience and my feelings on this topic helps others

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