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 façade 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!

I have a Facebook page called Love Button Worthy! It features photos, blogs, quotes, and other content full of positivity and inspiration. Click here to check it out. Please like the page if it suits you and don’t forget to invite your friends to like it, too.  

 Its all about the books, Baby! I hope this blog helps you to create a more peaceful life. Keep in touch by the following methods: Use the links under the archive menu to subscribe or follow by e-mail. Help me get this message out by sharing it with your friends on social media! If you enjoyed it and were helped by it, they will, too! Comment by using the comment link below or write to me with your comments and questions at mindchange4all@gmail.com  I look forward to hearing from you!

Life Changing Experience

            In this post, I am revisiting my very first post. My Facebook friends already know that the book that changed my life is being featured on the Oprah Winfrey Network starting Sunday, March 23 at 11:00 am Central time, 10:00 am Eastern time. Oprah and Eckhart Tolle did a series of ten webinars back in 2008 when Oprah featured his book in her book club. She is now going to televise the webinars from 2008. I believe she will also live stream them on Oprah.com and Super Soul Sunday Facebook page if you don’t get the OWN network. This book and these webinars taught me about the ego, which I write about in the post. If you have followed this blog from the beginning you have already read this post. Whether you are new to my blog or not I hope you will join me in watching the televised webinars. I will be watching live and chatting, private messaging and e-mailing with anyone who wants to contact me. You can read one chapter each week and learn more about it on the show each week for ten weeks.

            I want to thank everyone who has followed this blog, commented on it, messaged me and e-mailed me about it, as well as shared it and liked it on Facebook and twitter! Thank you all so much for your support! Each and every one of you holds a special place in my heart. And now my first post revisited…

“Life isn’t as serious as my mind makes it out to be.” ~ Eckhart Tolle

            When Joshua was first diagnosed we were told he had atypical mild cerebral palsy. His diagnosis has changed since then. At that time, we were told by the doctor that he would most likely grow up pretty ‘normal’ and that he might be a little clumsy, but nothing too out of the ordinary. What prompted her to tell us this was a question my husband had asked:

When Joshua grows up will he be like a child in a man’s body?

            When the words came out of his mouth I was stunned. I don’t think that thought had occurred to me before that moment. I had been focused on finding out what the problem was and if there was any way to fix whatever was causing his delays. I hadn’t thought that far into the future. For an instant, I was horrified of what her answer would be, but at the same time, I was eager to hear it. Her answer turned out to be a relief.

            Leaving her office that day we were pretty silent in the elevator. Neither of us knew what to say to the other. I was still going over in my mind the implications of my husband’s question.

What if she had answered differently?

How does she know she is right?

She’s a doctor. She probably sees lots of kids like Josh and so she knows what we can expect.

She knows so much more than we do about these things; after all, she went to school for this.

Still, why would he even ask that? How did that enter his mind? Has he been wondering that all these months and never told me?

She said that if Joshua learned anything in occupational therapy it would be a good sign and he did learn something. He did. That’s a good sign. We just have to keep taking him to therapy and he will do better and better.  

            My thoughts went on and on, chattering away; worrying, rationalizing, reasoning, looking for clues to support what I wanted to be true. Most of us have noticed that our mind is always talking to us in our head. You are probably reading this silently right now and yet there is a voice that you hear in your mind which is reading the words to you. At the same time, you are having thoughts and feelings about what you are reading. You may be agreeing with these words or disagreeing with these words. You may be thinking all this is ridiculous or you may be feeling a little intrigued because you never really thought of it this way before. Notice that it is possible to hear the voice reading and hear the voice thinking at the same time.  So who is the voice? That voice you hear in your mind is your ego. This voice you hear sounds like you because it is, in essence, you. It can be judgmental towards people – including yourself – situations, events, and even objects. It can be jealous, hateful, loving, happy, sad, wanting, worried – as I was in that elevator – or any other emotion or state you can think of. It can be positive or negative, helpful or harmful. The trick is to learn to recognize it and control it. In future posts, I will discuss the various aspects of the ego because there are many different ways it can affect you.

            We all have an ego. Most of us think of egotism as the arrogant individual who his full of himself or herself. They think they are so great! But our ego is not only that. As I said, we all have one and it can take on any attitude. Unless you are extremely self-aware and you already have known this for your entire life, your ego has been the one guiding you through life. God has been trying to guide you, but if your life is not everything you want it to be, it is your ego’s fault. It may help to picture it this way: Have you ever seen a cartoon where someone has a little red devil with horns sitting on one shoulder and a little angel with a halo sitting on the other shoulder? The devil is whispering in the person’s ear telling them to do something ‘bad’ and the angel is trying to talk them out of it. It’s like that. The little devil is your ego and instead of living on your shoulder it lives in your mind, the angel is your conscience and it lives in your heart. In my case, in the elevator, my ego was trying to scare me about the future. This little devil did not go away when I walked out of that elevator. Oh no! That little devil stuck with me for years and she can still creep back in if I don’t keep her caged. Except now instead of worrying about what Joshua will grow up to be like, she tempts me with worry over who will care for him when I’m gone. Joshua’s doctor was wrong that day. He did grow up to be like a child in a man’s body. As the years went on and he grew farther and farther behind other children his age my little devil ego tempted me with worry and self-pity and judgment over other things, too.

            I used to have a home daycare and when Joshua was little, shortly after he was diagnosed, one of my clients asked if it would become a problem for me, as our children grew up together, if her child started to pass Joshua in their abilities. I hadn’t even thought of that up until that point (just like with my husband’s question to the doctor – see a pattern? You can take on fears of others, or create them yourself) but when she asked the question my ego latched on to that idea and off I went to ‘feeling sorry for Monica land.’ I started to come up with all kinds of nonsensical stories of how sad that would be for me. Her ego had probably brought up these same stories in her mind about how sad it would be for me. Her ego might even have suggested that it would be hard for her to see their ability levels changing in front of her – poor little Joshua. It is possible that she asked that question because she felt superior for having a ‘normal’ child. And yet, it is also possible that she felt true compassion for me because my child was disabled and she was genuinely concerned about how I would feel. My point is, whatever judgment I place on her question comes from my own mind and has nothing to do with her. I can’t possibly know for 100% certain what was in her mind. I choose which judgment I am going to place on it. It’s about the story I tell myself about it and what I choose to believe. For all I know, neither scenario is true. Whatever reason caused her to ask the question has nothing to do with me. It was all about her ego stories in her mind.

            Our ego is based on lies. Not one of our judgments about each other is true. Not one single one. Our ego makes up stories to convince us that our judgments are correct. We find whatever evidence we are looking for to corroborate our story and that evidence is based on more lies. It is our perception of things, but not reality. If we like someone we tend to perceive them as truthful, loving and kind. If we dislike someone we tend to question their motives and perceive them in more negative ways. We can keep our minds open and recognize that we may be wrong. In order to break free from our ego, we have to start questioning all of our thoughts. We can stop believing everything we think. We are conjuring up stories to support our beliefs, but we don’t have to believe them. I know I am making it sound like our ego is a separate entity from us that controls us, it is not separate from us – it is part of us as human beings – but it does try to separate us from each other. The good news is that once we realize what is happening we can take control of it. We choose our own thoughts. If a thought comes in that is judgmental we can choose a different thought or a different way of looking at it.

            If you are feeling judgmental about someone, your ego is making you superior to that person. You may not want to admit it, but if you really think honestly about it that is what you are doing. I have heard it called ‘leveling.’ You are trying to get on a level field with that person so you tear them down in order to build yourself up by comparison. We tear them down because the reality is that we secretly fear they are better than us somehow. We are constantly comparing ourselves to others. I have a pretty big inferiority complex. Actually, I used  to have an inferiority complex. Okay, if I’m being really honest, this little devil creeps in more than I like, but I have made great strides in taming her. If I hadn’t I sure as heck wouldn’t be doing this blog and sending it out to everyone I know! I’ve had some pretty serious doubts and worries about how this will be received by some people and how others will judge me.

What if everyone already knows all this and I am the last fool on the planet who just discovered it? I’m going to look like an idiot!

What if people think I’m a know it all?

What if people think I’m arrogant and conceited for doing this?

What if people think I’m silly?          

I have had self-doubts about it, also.

Who do I think I am to teach people?

What do I have to contribute?

Can I handle any criticism that may come my way?

I could go on, but I’ll spare you.

            Recognizing my ego has made a life changing difference in me – slowly. I’m still a work in progress with fears and doubts creeping in, but wisdom has given me courage like I never had before. I could give myself any excuse not to do this; I’m too busy, people will judge me, it would take too much time away from Joshua, people don’t care what I have to say, but if I don’t do this I feel like I’ll go crazy. Just now when I typed that last sentence the thought came in, “Someone out there’s going to say, ‘YOU ARE CRAZY,’ as soon as they read that.” Oh, well. So be it. I am now secure in the knowledge that what anyone thinks of me is really all about them, just as what I think of others is all about me.

            Earlier I mentioned that your ego is guiding your life, but God has been trying to guide you. Every decision you make is based on a judgment of some kind and is probably being made out of fear, but your ego won’t let you see it that way. Your ego is too proud to admit what is real because if it did, it would die. It has to keep you feeling the way it wants you to feel in order to stay alive. It is the battle between the devil and the angel; your mind versus your heart. The angel will never die, but the devil knows it is living in darkness. All it will take to make it disappear is to keep shining light on it.

            If I were to allow all of the doubts to stop me from writing these blog posts I would be letting my ego control my life. Our passion in life comes from what we love and what we are longing to do. Ever since I read the book that changed my life five years ago, A New Earth, by Eckhart Tolle, I have wanted to spread this knowledge. I think everyone who experiences this wants to share it with everyone. At first, I only told my husband because I was afraid of how it would be received and how I would be perceived. It felt like I was living on a cloud for a while and I kept thinking that people would think I was going insane if I told them how I felt. It was, as Saint Paul described it, the peace of god which passes all understanding. I even wondered if I were going a little over the edge because it felt so enormously wonderful, like nothing I had ever felt. Pure love is what it is. Even if I had been going over the edge, I wouldn’t have cared; that is how wonderful it is. I take baby steps, though. I only spoke to my husband about it for almost one year. Then I slowly and carefully spoke to my parents, introducing little bits at a time.

            We must follow our heart no matter what our mind tells us. That is how life is lived. What would you do if you weren’t afraid? Walking through the fear is what you must do to fully and completely LIVE your life. Let God guide you. God is speaking to you all the time, sitting right there in your heart and that little devil is sitting in your mind. You know which one is more powerful! Which one are you going to let win?

Until next time, take care, Friends!

I have a Facebook page called Love Button Worthy! It features photos, blogs, quotes, and other content full of positivity and inspiration. Click here to check it out. Please like the page if it suits you and don’t forget to invite your friends to like it, too.  

 Books I love and recommend are here. I hope this blog helps you to create a more peaceful life. Keep in touch by the following methods: Use the links under the archive menu to subscribe or follow by e-mail. Help me get this message out by sharing it with your friends on social media! If you enjoyed it and were helped by it, they will, too! Comment by using the comment link below or write to me with your comments and questions at mindchange4all@gmail.com  I look forward to hearing from you!