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Monica Pickard spent twenty years of her adult life as a child care provider. During that time, with the help of her husband, she raised her son who has been diagnosed with Autism and Developmental Delay. She learned to navigate a world that was new to her – the world of Special Needs. She now shares these experiences and the wisdom they taught her, with love and heartfelt compassion for the human condition.

Thursday, March 27, 2014

Dis'd by the Doc?

"If you live for the approval of others you will die by their rejection." 
~ Pastor Rick Warren

            Have you ever had a doctor, teacher or other professional patronize you or say something rude to you while you are in their office? It has happened to me on several occasions. It seems to happen to many parents of children with special needs. I have recently been on a Facebook page with more than 150,000 followers from around the world called Autism Mothers. The comments I see over and over describe frustration with doctors, teachers and other professionals acting like they are the ultimate authority when it comes to our children. Seeing these comments over and over inspired me to write this post. In this post, I will share my nightmare doctor stories and I will give you some tools you can use to begin to educate these professionals and to gain their respect. I also want to empower you to stand up for yourself and for your kids. You are the ultimate expert on your child. It is time to claim that title once and for all, in no uncertain terms. Your intuition is better than any education from any school on any subject.

Josh pretend typing in 1991
       It makes you feel small and insignificant when someone acts like they know more than you do about the person you live with every day. You are not small and insignificant! Too often we let our intimidation keep us from standing up for ourselves. We are afraid to challenge the doctors, teachers and other professionals who work with our children. When they make us feel uncomfortable we often don’t want to make the situation even more uncomfortable, so we keep quiet. They are well respected in our communities and we see them as people we are supposed to trust. When they make snide remarks we blow it off and pretend that we don’t know what they are doing. We allow them to make us feel stupid. We tell ourselves that they are doctors and teachers and we are just plain people. We have to start standing up to them and challenging their beliefs and in some cases their education about our children. Even when they know more about the underlying disability, they will never know more about our children than us.
            We see and participate in disability and disease awareness campaigns all the time, but what we need is a campaign to educate the professionals who work with our children. That campaign begins and ends with us. We must make them aware of the effect they have on us when they patronize and dismiss us. I don’t want to disrespect their education, but we need to attempt to add to their knowledge and stop letting them disrespect what we can offer. They cannot learn it all from books! We have hands on, day by day, intimate knowledge and experience that they can learn from. I don’t claim to know why they do it; maybe they are taught in school to be confident and authoritative, maybe they begin to feel it as they practice their profession, maybe the daily grind gets to them and they feel pressures of time. In all but one of my situations with doctors there was a student present in the room, so maybe it is bravado or superiority they were displaying for the student. Sometimes they just don’t have enough knowledge about our particular issue. Whatever it is, we need to help them do better by showing them how they can improve.
            We have had some strange experiences with doctors and therapists. Joshua has had speech therapists that did not seem to understand communication therapy. They felt that if he could not talk and could not make the sounds they wanted him to make there was nothing they could do for him. They completely dismissed other forms of communication! This happened twice with speech therapists employed by our school district.
            I have had a doctor completely deny having a conversation with me about Joshua having autistic characteristics; a student was present during the conversation. When I brought it up a month later she acted like our previous conversation never took place. I can understand her not remembering, but they take notes in the patient's chart, right? I have no idea why she denied it, but she did. I insisted that we did talk about it and I told her bits and pieces of the conversation to jog her memory. She still denied the conversation. I did not know what to say! How could I speak to her about this when she denied what we said, or if she did not remember it, or if she did not take notes about it? She left the room briefly. My mind was spinning. 

Why would she deny that?
What is her motive?
Did she take notes?
Should I ask her to look at the notes?
Does she just not remember or is it something else?
She was pretty insistent that we did not have the conversation, but why?

            When she came back into the room I made no further mention of autism, although I wanted to so badly! I wanted to ask if she thought he had it, but then I would think, “What’s the point? She seems to want to avoid talking about autism! To this day, I don’t know why she denied our conversation.
            A couple of years later I had a doctor tell me, “Joshua is definitely not autistic because he hugs the people he loves. Autistic people are not affectionate.” If you know people with autism, you know better than that! Many times they are very affectionate, although on their own terms. I just thought to myself, “Great! This doctor doesn’t know what she is talking about! This has been a complete waste of time.” I did not try to educate this doctor, but now I wish I had.
            One doctor said the treatment I asked him about “would be like sprinkling fairy dust on my child and expecting him to be cured.” A student was present for that conversation. I was shocked and completely shut down on the subject. There was no room for discussion. I was embarrassed that I had even asked the question! Can you imagine that? A parent should never be embarrassed about asking a question. I don’t care what the question is; it should not be a source of embarrassment!
            I have also had a spine surgeon say to a student in my presence, “Joshua’s mother believes that he is autistic. Many times families believe things about their children that are not necessarily correct. They may not understand certain diagnoses and we need to be sensitive to this.” We had been seeing this doctor for years and he never let on he felt that way until our last follow-up appointment. I’m not sure if it was to impress the student or because he knew he would never see me again. He had been respectful up to that point. What did I do after hearing his comments? While screaming bloody murder in my mind, I thanked him politely and we left. Joshua probably thought I was crazy on the drive home because I let it all out!

            This may seem like a trivial thing. Who cares what a spine doctor thinks about autism? It is not so trivial when we realize he is teaching a new generation of doctors who will then have the same attitude that he displayed. The cycle will continue. There is a ripple effect. These incidents will impact the young students present at these visits and how they will interact with their own patients and their parents. They have learned not to put much stock in a parent’s opinion or knowledge about their own child. These young doctors, at some point, will encounter a family similar to mine and this teaching could impact that family in a negative or even harmful way. The experienced doctors will continue this behavior if no one calls them on it.
            So what can we do to battle these attitudes and beliefs when working with professionals? There are plenty of things! Tell them how you feel. If you are able to say something to them about their behavior right then and there, go for it! If you are nervous about it, start with these words, “I’m afraid to say this to you because I’m not sure what your reaction will be, but I feel ____ about what you just said.” Then elaborate on why you feel that way. Most people will applaud your courage in speaking up and in admitting your fear. Some won’t, but that is when you know you should waste no more time with them.
            Oftentimes, we don’t think of what we should have said until later, so tell them later if that is more comfortable or easier for you. Sometimes we need a chance to get our thoughts together or to calm down, so we don’t end up saying something we will regret. Maybe you need time to build up your courage. There is nothing wrong with that! Better late than never, right? Don’t be afraid. I know it is intimidating being with doctors and teachers who seem so confident, but they are people, too, just like you. Their confidence might be a fa├žade and even if it is real, they can benefit from your knowledge. Any teacher or doctor worth their salt will welcome your input. They should value your knowledge because you live with this child every day. You know them better than anyone. Remember you are the ultimate expert on your child. If they do not value your opinion, cut them loose and find one who will. Be sure to tell them exactly why you are leaving them for someone else.
            Give them things to read. Books that have helped you, articles that have helped you understand things better and even printouts of social media discussions can be a valuable source for you to share with them. And I do mean give them the resources rather than just telling them about it. Give them a physical copy of the piece of information that you learned from. They will be more likely to read what is right there in front of them than if you simply tell them about a resource. This can help to educate them on the differences between their beliefs and reality. You can send them things after the appointment if an issue came up during the appointment, or you can send them things to help prepare them ahead of time if there is something specific you want to talk about. Even if you are going to leave them and find a new doctor, I encourage you to send them information anyway and to tell them how you feel. It could help someone else down the line in their practice. We parents have to stick to together and look out for one another.
            If a professional has been condescending, call them out on it. You have a right to be respected. It’s easier said than done, but it needs to be done. Looking back, I wish I had been less timid and stood up for myself. Sometimes I think they know they are intimidating to parents and they take advantage of it. As with the education and knowledge issues, you can tell them they are disrespecting you in the moment or you can let them know about it later. Write a letter, send an e-mail or make a call to them and let them know that what they said is not okay and why. No matter what the issue is, be honest and always be respectful. We should treat them the way we want them to treat us. You will never gain their respect by being disrespectful. If you come off as angry and insulting they won’t listen to what you have to say. Being assertive is very different from being confrontational. 

            If you are a professional reading this, here are some things you may or may not know and should keep in mind: If you know one person with autism (and most other disabilities), you know only one person with autism (or other disability). Every case is different. Stereotypes might be applicable, but not necessarily. You can’t know the intricacies of most disabilities solely by reading books. You have to meet people, get to know them and listen to their parents. Parents are the ultimate experts on their own children. Working with the parents as a team may help you build a good reputation in your field. We tell each other when we find a great doctor and we tell each other about the not so great ones, too! Find online groups of parents that pertain to each disability. You can learn so much more from parents than you can from books and school. These forums offer real wisdom from parents around the world. You will learn about our frustrations, our fears, our issues, our joys, our pain and most importantly you will learn about our children! You will learn about things you might be doing wrong in your practice. By respecting, listening to and learning from parents, you will become a better professional for your clients and the students you help teach.
            I hope this post empowers parents to stand up for yourselves and your children in a way you may have felt you could not before. You have a right to be heard! You have a right to be respected! You are a human being with feelings! You have just as much right to be treated with dignity and respect, and to be heard, as anyone from any income level, education level, or profession. You are not 'just a mom' or 'just a dad.' Please never forget that you are the ultimate expert on your children! To read more about this when teachers are involved, click the link below.
How School Systems Create *That* Parent

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            If you found this post helpful someone else will, too! Like, share, tweet and e-mail your friends to let them see it. I would love to hear your ‘Dis’d by the Doc’ stories and ways you helped to educate a professional, so comment below or email me at mindchange4all@gmail.com

Much love and luck to you all!

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  1. Great post! My son was diagnosed at 10 and I've only had a few years to deal with doctors, but what you said resonates with me. The first doctor we saw that ended up diagnosing him was great with our son, but horrible with us parents! He was rude and condescending, as if we were Gabriel's problem. We took our son somewhere else, but I wish I'd told that doctor why. The next psychologist we saw was great with both us and our son. I had one appointment, where I felt he was judging my parenting and felt humiliated. The next appointment, I brought up how what he said made me feel...and it was just poor wording by him and a misunderstanding! He apologized profusely and was very complimentary and encouraging of my parenting. That appointment served to cement our relationship with him as a provider. I recently started blogging about parenting a child with Autism and my neurotypical children as well. Feel free to take a look. http://www.themusingsofmo.com

  2. Thank you for sharing your blog with me! I enjoyed reading some of the posts. Your comment shows that communicating your feelings about how you are being treated by a doctor can truly make a positive difference. Thank you! I am happy you enjoyed this post. We moms can learn a lot from each other.