Excruciating, Exquisite Life

“Friendship is born at that moment when one man says to another, “What! You, too? I thought that no one but myself…”” ~ C. S. Lewis

            As I drove Joshua to his day program one morning recently I was looking at all the snow piled up along the sides of the roads, sidewalks and especially the big piles alongside the driveways. Where I live we have not seen this much snow piled up in quite a while; at least not for this extended amount of time. I was struck by the yin and yang of the snow. It is exquisitely beautiful in some spots and excruciatingly dull in others. It shines brightly and sparkles in the sunlight along the sides of the roads and in the yards where it is all white and pure. In the street, it is muddy and slushy and ugly, where it has been driven over time and again by dirty tires. During this drive, I saw people shoveling out of driveways and snowplows clearing the snow off of parking lots. One woman was shoveling a lengthy driveway with a look of misery on her face. I felt her agony as I remembered helping my husband shovel our own lengthy driveway when our snow blower stopped working. I was reminded of the help we get from our community. On my street, some of the people with snow blowers and plows help some of the people who don’t have them. It is a beautiful thing to see neighbors helping neighbors. Indeed, it is a beautiful thing to do.

            Looking closely at snow you can see its true brilliance. Every flake is unique, intricate and beautiful, just like people. Sure, we can get muddy and ugly sometimes, but deep down we are pure and brilliant. Challenges pile up in our lives just like the snow this winter. People, including ourselves, drive through our hearts and minds with dirty tires. Unexpected emotional storms arise, laying down fresh challenges to handle. If we keep letting the challenges pile up, if we don’t reach out for emotional support we will forever be trudging through the slush.

            In my attempts to find out if Joshua was on the autism spectrum, we were referred to a couple of different doctors and eventually ended up at a psychiatrist’s office. We were told this doctor would be well equipped to diagnose him one way or the other. She turned out to know even less about autism than I did through the extensive reading I had been doing on the subject. She told me that the fact that he hugs his parents and grandparents meant that he definitely was not autistic. I should have suggested she read the material I had been reading, but I was too timid to do that! This doctor wanted to talk about my feelings of having a child with disabilities. I kept asking her about autism and she kept asking me about my feelings. I stopped taking Josh to see her after about three visits because I did not want to talk to a stranger about my feelings. Plus, insurance was only paying half of the bill; and do you know how much psychiatrists charge per hour? Holy big bucks, Batman!

            Some doctors and other organizations kept telling me about support groups. I never wanted to go to a support group and sit around feeling sorry for myself with a bunch of strangers. Feeling sorry for myself was reserved for my alone time. I was not too keen on hearing their problems either. I had enough of my own. I was tough on the outside. I could handle all of this on the outside. My mother recently said to me that she never knew the extent of my inner struggles all those years until I started writing this blog. My façade worked very well. I think I even had myself convinced sometimes. I let it all pile up inside, hiding my feelings and frustrations in an attempt to look like I knew what I was doing and could handle it all. I could always talk to my husband. In fact, we have had many woe-is-me conversations.

“It is not the critic who counts;

not the man who points out how the strong man stumbles, or where the doer of deeds could have done them better.

The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood;

who strives valiantly;

who errs, who comes short again and again, because there is no effort without error and shortcoming;

but who does actually strive to do the deeds;

who knows great enthusiasms, the great devotions;

who spends himself in a worthy cause;

who at the best, knows in the end, the triumph of high achievement, and who at the worst, if he fails, at least, fails while daring greatly.” ~ Theodore Roosevelt

            I can’t read that quote while thinking of my friends, old and new, who have children with special needs, and not get teary eyed! I now have many friends who can relate to my life. There are two couples who have children with Down’s syndrome that have been a great support for me and I hope I have been for them! Until recently I did not share with them some of the messier aspects of parenting Joshua. I did not want to be seen as vulnerable and I did not want them to see my shame; MY shame for being unable to teach him, not his. And I certainly did not share some of my deepest darkest feelings with anyone but my best friends; even that came later. To my shock, what I found once I did start to talk about these things is that I am not alone. Even in my deepest darkest feelings, the ones I thought no other human could relate to, one of my best friends said she felt exactly the same way I did and at times she had the same shame riddled thoughts I had. I won’t be sharing those with you today, however.

            My sorrow over having to shave my adult child’s face, bathe him, pick his nose for him and my fear for his future are many of the same things my friends feel sorrow over with their children. It is the excruciating slush we share. Their kids are capable of doing some of these things for themselves, but even so they don’t judge me or make me feel ashamed because mine can’t. They get it. They know I am trying my best even when my best is not very good because they understand the constant struggle. They know if I could do better I would and I know it about them, too, because we live with similar challenges every day. Most parents of children with special needs are in a club we did not sign up to become members of, and no one else, not our own parents or any other parent who only has typical children will ever understand the challenges as profoundly as we do. You can’t understand it as we do unless you shovel this slush every single day in every single way that we do. Still, there are parents who did sign up for this club; the foster parents and the adoptive parents lined up, shovels in hand, ready for duty. For those parents, I have a special admiration. They have a kind of integrity and a strength I may never achieve. This club is filled with the parents who have learned, in a hard way, why it is never okay to judge and shame another parent, no matter what. While we and all of society can see the exquisite snowflakes within our families, we know the excruciating slush in our own hearts and minds. We don’t like it, but we know where it comes from and we know sometimes that slush is all we can muster.

            I regret not sharing more with my friends sooner because when you are vulnerable with the people you love and who love you, your bond becomes even stronger. You can become a stronger person through vulnerability when you share your stories, your concerns, your issues and your feelings with other people. Even people you may not know but who have had similar experiences to yours share a common bond with you. Sometimes they can offer you a solution you never thought of. Sometimes not. They can and will offer you their complete and total understanding of your deepest hurt, frustrations, and your joy. They will offer you true compassion. And you will feel their compassion deep down to your bones because you know they get it.

“Compassion is a relationship between equals. Only when we know our own darkness well can we be present with the darkness of others. Compassion becomes real when we recognize our shared humanity.” ~ Pema Chödrön

            For those of you who have young children and are new to this special world of needs, please don’t hesitate to befriend other parents with special children. Seek out parents with young children, but also seek out parents who have been in this special world for a while. They can help to alleviate some of your fears and help you to relax a bit with their insights. That is exactly what my best friends did for me very quickly in our relationships. Sharing all of your feelings and frustrations with a spouse is important, but may not always be helpful, however. Men and women with different personalities and different strengths and weaknesses may not always be able to relate to one another’s feelings. If one spouse is strong in one area they may not be able to understand why the other spouse struggles in that area. Listen to your spouse and try to see things from their perspective. It is easy for marriages to fall apart when you are not communicating and sharing. Keep in mind that it is helpful for men to share with other men and women to share with other women because there are gender issues related to parenting children with special needs. A man might feel a profound loss when his son can’t play sports and his wife may not be able to relate to that type of loss, but that is just one example. Conversely, there are issues unique to women’s feelings as well.

            I did not understand the importance of sharing with people who truly get it until I watched an episode of Parenthood on NBC. It was the one where two parents find out their son has Asperger’s Syndrome. Upon finding out the diagnosis, they embraced each other in sorrow and fear. We did not hear the words they said to each other, but we saw the looks on their faces as the husband told the wife the news from the doctor. It brought back the feelings of getting my son’s first diagnosis because it was exactly what I was witnessing on the television screen. Their faces and their embrace brought it flooding back to me in one instant. That is when I knew it had been a mistake to keep my feelings and insecurities hidden all those years. Seeing their raw pain – even while knowing it was a fictional story – made me realize there is a community out there who gets it, just as me and my friends get it. Not only that but even with the painful feelings flooding back to me after all these years, it was healing to witness it in someone else; to feel their pain and know it as my own. I later discovered that people on the staff of that show have children with autism and Asperger’s. I was relieved to find that out, because up to that point I was skeptical that they could keep it real and depict Asperger’s in a realistic way. They have done it immensely well!

            Dare to share your feelings and your stories with others. Just like with the never ending piles of snow in the driveway, your family, friends and even strangers can help you dig your way out of the fear, loneliness and frustrations you encounter on this journey through life. Sharing your stories with one another will help you to know that we all struggle with the same things and we rejoice over the same strange, silly, beautiful things, too. Those who you confide in will understand the absolute, heart swelling, exquisite joy of your ten-year-old signing I love you for the first time. They will understand your elation over the things most parents take for granted such as the joy and relief you feel when your child finally can wipe their own bottom! We all need to share with each other more and to shine more light on the intricate, sometimes dirty nature of our children’s disabilities. Otherwise, our drive through life will remain focused on the dirty, slushy street, never looking to the side of the road where the pure, delicate flakes are sparkling.

            I have learned this lesson over time and Brené Brown shares this wisdom at the very beginning of her book, Daring Greatly:

Vulnerability can be an excruciating emotion.

When shared, vulnerability is exquisite.

            Until next time, you have my love and support. 

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 to make you wise are found 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!

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!

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.  

Be wise, Friend! Read these. 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!