You are the Experts! We want to hear your story

Merely Me Health Guide
  • The topic of "experts" has been coming up on Health Central from readers lately and I thought I might take a moment or two to explore this concept. I am going to tell you the truth. No matter what title I have above my name, I am not keen on this label. If you wander over to my profile you will see that I am a published writer, a mom to a child who has extreme symptoms of ADHD and autism, and I have a Master's in Special Education. Since my early twenties when I began my graduate course work in the field of Special Education there hasn't been a day that has gone by that I have not had to think about ADHD in some way. Before I decided to stay home with my boys I also worked with adults who had disabilities and many had ADHD in addition to many other diagnoses.

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    Despite all of this experience I would never call myself an "expert" because I think it is such an overused term that it basically has lost all meaning.  It means different things to different people.

     

    When I began to search for help for my son Max prior to any diagnosis I turned to the experts. My husband and I talked to a geneticist who told us that my son's challenges could best be described as "a murky business." Gee doc, thanks for that. Can you be more vague? The diagnostician who thought my son was on the autism spectrum told us that she knew one boy like Max who went to his prom. I was hoping for a better dream than this for my son's future. We have had an expert tell us that my son was very smart. Had another expert tell me that Max was just lazy. And still another told us that he was mentally retarded.


    When my son was an extremely hyperactive four year old we had a psychologist come in to give us guidance. Max was doing things like waking up in the middle of the night and coming into our bedroom to turn off and on our lamp light. The psychologist recommended that we use this behavior to teach him how to better communicate with us. Bleary eyed and highly irritable from lack of sleep, I told the psychologist that we would be dropping off Max to her home in the middle of the night so she could teach him communication skills. Meanwhile we took the light bulb out of the lamp so he couldn't wake us up with a light show.


    We have had experts who got into a verbal shouting match in our home of how to best teach Max. We have had experts from the school system who claimed they knew all about my child and what was best for him without ever meeting him. I have had an expert tell me not to worry, that she would be able to "fix" my son. Had yet another one bring me brochures about a farm community for adults with disabilities when Max was not even five.


    Now you have to understand that I am an educated mother. I had taught people with multiple diagnoses and learning challenges for years. But all of this meant very little when I became a parent to a child that the "experts" had no idea what to do with. All of a sudden I was treated with disdain and as the "poor mother" who didn't know what was best for her child. Everyone had an opinion, a method, or a way to look at Max which never seemed to quite mesh with reality.


  • If you were to line up ten experts to have them look at your child I am convinced by my own experience, that they all would say vastly different things. An I bit jaded? Yes. Do I feel there is merit in talking with "experts"? Yes. But you have to take what they say with a grain of salt. They are not living with your child. They don't know him or her like you do.
    Who did I end up getting the best advice and suggestions from? I have to say...other parents. I had gotten answers from everything from how to toilet train my son to how to write an effective letter to gain the best services. I got tired of hearing from "experts" who had no experience living with a child like my Max.  So this is the expertise that I am more excited about giving to you.  I have professional credentials yes.  But more importantly I am a mom who has been through the system, has fought for services, gets the looks from people in public who don't understand my child, has dealt with extreme behaviors, and  who teaches, loves, and lives with a child that some of the experts wanted to give up on.

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    This is why I think such an on-line community such as this is absolutely invaluable. We can help each other. You are the expert of your own experience. You know your child. You have experiences to share with others which can help. If you are an adult with ADHD you can share those experiences with parents who have children with this diagnosis as well as other adults who face similar challenges as you do.


    My dream is to have this site be a vibrant and interactive community of members helping members. Let's make that happen. Tell us your story about how you cope with your ADHD. If you are a parent tell us which methods and strategies work best to help your child. In sharing your story you are helping others who need support. YOU are our true experts. We want to hear from you.

     

Published On: December 14, 2009