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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, February 6, 2014

Didn't Your Parents Ever Teach You Not To Stare?

“Our beliefs create our world picture, 
which we then transmit to others.” 
~ Barry Neil Kaufman, 
Author and father of a son with autism

            I read a little book back in the mid-1990’s called HAPPINESS IS A CHOICE, written by Barry Neil Kaufman. It had a great impact on my life, but ironically it did not completely change my thinking about my life with Joshua, even though it was written by a man intimate with autism. He wrote the book to show people that no matter what, you can be happy because you choose to be happy. Happiness does not depend on circumstances, only your attitude. That book certainly helped me to loosen up on a few things, one of which I am posting about today.
            Did you ever feel like you were being watched or that someone was staring at you? When you have a child or a family member with a disability and you go out in public with them, it often feels like you are being watched by strangers. It can feel that way around family members, too. When there is a family gathering and you are with your family that you don’t see on a regular basis, it can feel like they are watching your child closely and watching how you interact with your child.
            I understand the reasons why people, including family, stare. Part of it is because they are not used to being around someone with disabilities, making it difficult not to watch you and your child. They may be looking to you for guidance on how to interact with the person who is different. Part of it is because they are in awe of you both; your ability to handle situations that arise and your child’s just plain awesomeness are fascinating to some people.

            Sometimes you may feel like you are being watched simply because you are self-conscious. I’m sure there were times when I felt like we were being stared at when we were not. However, there are times when you catch someone looking at you or your child with a sympathetic grin. That is when you know it is not just in your mind. Sometimes when you are around strangers, as opposed to family, it feels more like people think you are freaks, depending on their actions towards you or your child. No one wants to feel that way.
            Some people stare because they are annoyed by your child, like when a child clearly older than two is having a tantrum. They try to shoot daggers through you with their eyes. Sometimes it is not obvious by looking at your child that they have mental challenges until they do something out of the ordinary like make a strange sound or flap their hands, or when your teenage son starts jumping up and down and squealing with delight or frustration. I get it. I know people sometimes can’t help staring, especially children. Many times they don’t even realize they are staring. Still, it makes us uncomfortable. We might feel shamed by the judgment or angry about the judgment. Many times we feel like we are living in a fish bowl and sometimes we just want to go unnoticed and to blend in with the crowd.
            There were many times in public when people stared at us. Joshua never wanted to ride on the little kiddy toys at the mall when he was the correct age for it and I was always very disappointed when he was afraid to ride the toys, but when he got older he wanted to ride on them. He was almost too big to ride them by then, but I was thrilled that he wanted to do it and that feeling overtook the feeling of wanting to blend in. So, as big as he was, I put him on whatever toy he wanted and put the quarters in to start it up. People walked by and looked at us, sometimes for longer than was necessary, but I simply ignored the stares and we had a blast!
            There were other times when I felt more self-conscious about the stares of others, though. There were times when we went to the mall and let Joshua play in the play area around other kids. He was bigger than all of the kids and stood out because of it. Add to that the fact that he did not actually play; he went up to the kids, watched what they were doing and made strange sounds and body movements because of his excitement. For those who don’t know, Joshua is nonverbal. I could see the other parents keeping a close eye on their kids when he went near them. Sometimes the kids tried to get him to join their play. Other times they completely ignored him. Still other times the kids he was near got scared because of his strange vocalizations and actions, which caused them to move closer to their parents. These children and some of the parents watched him as if he were an alien. I sat there pretending not to notice the children and their parents following his every move and glancing at me to see what I was doing. I was thankful he did not understand any of this and happy he could just be there, enjoying the children and the sounds, and that he was happy.

            I have to admit that there were times when getting people’s attention worked to our advantage. We pushed Josh around in a stroller well past the age that most people do with their children. He always wanted to be carried rather than walk, so the stroller came in handy. I began to notice that he became very fussy at times, especially at the mall, and he would make a loud noise to indicate that he was upset. This noise sounded almost like a siren and was quite loud. He did this many times on many different trips to the mall before I began to see the pattern. He did it only when we were getting close to people in front of us. They would always turn to see what the commotion was about and then, miraculously, they would step to the side and let us pass. I know it was not very nice, but once I realized what was happening I used it to my advantage! Shameful, I know, but if given the chance I would probably do it again! I guess he didn’t like being down so low and having people standing or walking in front of him where he could not see anything. At the mall, he became My Little Siren Boy Who Could Part the Sea.
            I am grateful that Joshua never felt uncomfortable about people staring. It has been quite a while since I have felt uncomfortable about it. As time went by, I began to get tired of feeling that way. It is exhausting being emotionally on guard all of the time. I began to let it go and realize that it did not matter so much what other people thought of him. The book I mentioned at the beginning of this post helped me to see that I was transmitting my beliefs and feelings onto others who may or may not have been staring at us. I could also see that they were transmitting their feelings and beliefs onto us. I still did not quite have a handle on it completely, but it did help. Looking back, I can see that little bits and pieces were getting through and if I had truly considered what that book told me I could have saved myself years of suffering. Fortunately, The Creative Force of Love does not give up!

            The real freedom came about years later when I understood that judgment is NEVER about the person being judged. I have said that many times in various posts, but I cannot stress it enough! People come up with all sorts of stories in their minds about how things should be, how people should behave, how parents should control their kids, etc. Sometimes there is fear that arises when people have not encountered anyone with disabilities. There is still a small segment of society that is biased against people with disabilities and believes they should not be out where people can see them. Fortunately, that is more and more rare.
            Understanding my own ‘should and should not’ thoughts, and how these thoughts cause my suffering was essential to dropping my old ways of thinking. I used to think things like:

It is so rude to stare.
People should not stare.
They should know how uncomfortable it makes us.
If they want to know about him they should just ask me.

            Having the idea that something should be a certain way or should not be a certain way is arguing with reality, as Byron Katie says. When you argue with reality you suffer because you simply cannot change reality. Don Miguel Ruiz lays out agreements that we can make with ourselves to live a happier life, in his book The Four Agreements. The second agreement he says we can make with ourselves is: Don’t take anything personally. He says this because someone else’s opinion is never about you. It is always, always, always about them.

“If someone gives you [a negative] opinion, [or stares at you – my words, not his] don’t take it personally because the truth is that this person is dealing with his or her own feelings, beliefs, and opinions. That person tried to send poison to you and if you take it personally, then you take that poison and it becomes yours… But if you don’t take it personally, then you are immune in the middle of hell.”  ~ Don Miguel Ruiz

            Mr. Ruiz’s third agreement is also relevant here, which is: Don’t make assumptions. The truth is we can never know what someone else is thinking, especially in situations where we are the objects of unwanted attention. All of the reasons I stated earlier for why people stare may be true at the time, but they are not necessarily true. We can never really know unless we ask them. You might get a pretty good sense of why they are staring if they seem angry while your child is having a tantrum, but sometimes fear masks itself as anger. Think of a time when you were angry about something. Really think about what you were actually feeling. If you are honest you will realize that deep down you were afraid of something and your fear manifested as anger. So remember in situations with your child, people who don’t know your child may just be fearful of something they are not familiar with. 

“Empathy is the antidote to shame.” ~ Brene Brown

            What Brene Brown means by that is that having empathy for someone who is feeling shame will help them to let go of the shame, but something else occurs to me. When someone is staring at you and your loved one with a disability and it makes you feel shame, you can alleviate your own feeling of shame by having empathy for the person staring. As I said, you never truly know why they are staring at you so having empathy for their reasons – even when you don’t know what they are – will help you to let go of the feeling of shame. You simply say to yourself, I don’t know why this person is staring, but whatever the reason it must suck to be them!
            There are times when people stare because they are curious or because they have a special place in their heart for people with disabilities. They may have a family member with disabilities or they may work with people with special needs. You just never know what is going on in their mind. 
            I have one last suggestion if nothing I have said so far helps you in these situations. I have found that if people are staring relentlessly at Joshua it is fun to look them in the eyes and smile a big smile that says, isn’t he magnificent? Sometimes they smile back as if to say He sure is! But even if they don’t smile back, they always stop staring. Take care, Friends!

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