When Grief Takes Hold Of Me

Once in a while, usually without any warning, and almost always when I am alone and it is quiet, I remember what is missing—No. Not what, but WHO is missing—and I am overcome with sadness. But sadness is not even an accurate description of the overwhelming feeling of grief that envelopes me when I remember. The word “sadness” does not do this feeling justice.

Sadness is what I feel when a friend moves away. Sadness is what I feel when someone says something mean and hurts my feelings. Sadness is what I feel when I think about pets we have had in the past who have died. Sadness is what I feel when I think of a special material possession I have lost. Sadness is what I feel when someone else loses a child.

The feeling I have when I think of my sweet baby girl who never took a breath is beyond sadness. The feeling that I feel when I think of my Chaney is a heart wrenching pain. It is a physical ache in the middle of my chest that leaves me feeling sick to my stomach and unable to breathe well. My eyes fill with tears and my vision blurs. I can get lost in this world of overwhelming grief if I am not careful.

And so when I begin to remember, and the grief takes hold of me, I get up and move. I clean a closet. I cook a meal. I play a game or read a book. I take a walk or turn on some music. I write about my feelings in a blog post. Because if I sit and think about what could have been, and dwell on the things that cannot be, I will only miss out on the things that are. And that would rob my husband of his wife. and my children of their mother, and benefit no one.

I will see her again someday. She’s waiting in a better place. And that makes my grief so much easier to bear.

To read more about my experience with miscarriage, see Loving Chaney.

Stumbling Through Life, Face Blind

I am waiting outside my daughter’s school when another mom greets me. I smile and say, “hello,” unsure if we have met before. Does she have a child in my daughter’s class? Is she just being friendly or should I know her? I wait to see if she wants to converse and try to gauge how I should act based on her next move. Can I “fake it” and identify her after an exchange or two? Or am I going to be forced to justify my ignorance with my standard line, “I am terrible with faces. I’m so sorry. Can you remind me who you are?” And then there is always the fear that I’ve been through this same scenario before with this same person. How many times can I do this with one person before they give up trying? And how many of the other moms around me consider me a snob because they have been through this with me a few times before, yet I still do not behave appropriately when they encounter me? This is my life. I am face blind. When I meet people, unless I am going to see them again immediately and then repeatedly, I will not be able to recognize them. Frankly, I’m baffled at the superpowers the rest of you seem to have. How do you do it? People basically all look very similar to me: two eyes, two ears, a nose and a mouth. Thank goodness for hair, or the lack thereof, and its differing colors and styles.

I cannot differentiate between faces, but I can often identify people by their voices, the way they walk, and body shape or size. If I can find a distinguishing characteristic then I am thankful. Things like a pair of glasses, painted fingernails, a tattoo, or facial hair often give me the clue I need to place someone. I can frequently identify people by their clothing or shoes, by the car they drive, or the place they live or work. Those things change though. Meeting someone out of context can thwart all my best cheats.

I volunteer one morning a week in a first grade class with a teacher friend of mine. I love it but I usually do not have the children’s names matched to their faces until the end of the year. Last year there were three boys with the same shade of blonde hair and the same type of cut. I tried every cheat I knew to figure out which boy was which and I never succeeded. Today I took my two youngest to McDonalds for lunch. A little girl ran across the restaurant and hugged me around the middle. I did recognize her as one of my little first grade friends but had no idea which one. That just exasperates me. Of course I smiled and visited with my little friend but I could not call her by name. This is a regular occurrence for me. It is bothersome. I want to be like everyone else who has the superpower of recognition!

My inability to discriminate between faces is very frustrating in other ways too. Without my husband to help me sort out the characters in a movie I am often lost. An evening in front of the television goes something like this: I ask, “Who just got shot? Was it the detective or the lawyer?” My husband patiently says, “It’s the detective.” I ask, “Who shot her?” He pauses the movie to explain, “Remember the guy we saw at the beginning of the movie? He was sitting in the car outside the bank.” Now I’ve got it straight and we can resume watching, until the next time I get confused about who is who. A few evenings ago we were watching a news show. I commented about the lady news anchor being on since the morning show. My husband explained that three of the lady anchors look similar. They all have shoulder-length blonde hair. I’ve watched this channel for years. I always wondered how the same lady managed to be in every newscast. I am stumbling through life, face blind. 

If I am in a public place I probably walk past many people who I should be greeting as acquaintances but I am oblivious. If my husband is along, he will sometimes stop to speak with someone as I walk on. Later I ask, “Was that someone I should have known?” My husband says, “Yes” and then goes on to explain how I should have known them. Usually this ends with me embarrassed and apologetic, and him reminding me that it is not in my control. Regardless, it is humiliating and frustrating.

Upon meeting people for the first time I usually let them know I have trouble recognizing faces and probably will not acknowledge them the next time we meet. I ask them to be sure and speak to me and remind me who they are. So many times people will insist, “I understand. I am bad with names and faces too.” I’m sure this is to minimize the awkwardness of my disclosure and to help me feel better. What is really does is tell me they do not really understand that my face blindness is more than just an occasional memory glitch. Until very recently I did not know there was a population of people “like me” but an internet search tells me two percent of the population is face blind, and it has a name: prosopagnosia. I also found there are differing degrees of face blindness. Some people with prosopagnosia do not even recognize their own family members or close circle of friends. I can only imagine giving my, “I’m bad with faces so can you give me a reminder?” speech to my family members. My “handicap” does not seem like such a burden to me some days when I consider how much worse it could be. When my kids climb in my car after school I know they are mine. I do have that.  I've blogged about this and more in a post about thinking with a black and white mind. Read that here: A Look Inside a Black and White Mind

The Mother I Was and The Mother I Have Become

Have you ever heard the Indian fable about the seven blind mice and the elephant? Each of the mice explored a different part of the elephant and they each came away with a different description of the elephant. There was a moral to the story is a bit different than the moral to the story I want to tell today but the idea is somewhat the same. Ironically I have seven children in my story. I play the part of the elephant. Flattering, I know. 

All seven of my children would identify me as their mother. However, I am really not the same person to each one of them at all. If they were each asked to think back to their youngest memories and on into their elementary school years, they would have very different descriptions of their mother, yet they all had the same one. And if they were asked to describe the roles I play in their lives today, being all different ages, the descriptions would be vastly different.

My oldest four kids have memories of an energetic young mom who played kickball in the front yard, had Nerf gun wars, and could sit crossed-legged on the floor to dress a Barbie or build with Legos. They will remember a rule about movies. We only had G rated movies, no others were allowed. Their mom always seemed to have a toddler on her hip, and a baby on the way. She was always sleep-deprived and often grouchy because of it. The oldest would tell you that mom was strict and wanted to be obeyed immediately.  A clean house was very important to their mom and she cooked six nights a week.

The younger kids would probably listen to those stories and wonder just where their brothers and sisters had lived back then. These kids have never seen their mom kick a playground ball across the yard and run bases, shoot a Nerf gun, or sit cross-legged on the floor. The younger kids know an older mom who has issues with arthritis and moves pretty slow. They will remember a lot of nights when supper came from a can, a box, or a drive-thru window. And they will remember being able to watch a few PG rated movies while they were still in grade school. (Scandalous, I know.) Having an older mom is not the worst thing that could happen to a kid though. The younger kids will definitely remember a more patient mom who did not become stressed when the house was not clean or the kids did not obey the first time. Sure, I am the same person but… not really.

To two of my children I was a tutor and helped them with many of their assignments while the other kids will have little memory at all of mom sitting with them to do homework. It was not necessary. They managed quite well without help. Some of the kids loved to read and loved to be read to. Those children will recall lying in mom’s bed while she laughed hysterically at what Junie B Jones had just done. One of the boys was passionate about dinosaurs and he will remember that we spent a whole lot of time discussing those great beasts and trying to pronounce their names correctly. One of the girls was/is passionate about cows and tractors and we have spent many hours pouring over fun facts about farming and sitting at the cattle auction just for her pleasure.

The oldest children and the youngest two will remember a mom who volunteered in their classrooms in the primary grades and was often at the classroom parties. The children in the middle will not have those memories. The girls will remember a lot more play dates than the boys will as they played so quietly and did not require me to repair anything at the end of the day. The boys could definitely holler “discrimination” about this.

Five of the kids played baseball or softball in the summers when they were young and will have a picture in their mind of a mom in a lawn chair at practices, games, and tournaments. Two of the children will never associate their mother with a ball field at all. The oldest children will remember their mother having chickens that they had to help feed but not the younger ones. The older children will remember their mom taking them to swimming lessons but the younger children will remember a mom that taught them to swim in the pool we built in the backyard. Two of these kids might remember their mother with a joystick in her hand trying to learn to play video games. The rest of the children would say their mother had probably never held a joystick in her life. A couple of the children would remember a day their mother brought home eight different brands of hotdogs so they could have a blind taste test to settle a very important debate. Only one of the kids will have a memory of getting a pony on their birthday. That girl’s mom really came through for her!

All seven children will have some very similar memories. They will all be able to hear my voice in their mind, singing from the rocking chair. They will all remember their mom as their first Bible class teacher. They will all remember a mom who was crazy in love with their daddy.

I gave all seven children a good childhood but they did not all have the same childhood and I am learning to be okay with that. Not all my children had the same opportunity nor will they have all the same memories and has to be okay. I cannot recreate the older children’s childhood for the younger children, nor can I turn back the clock to make sure the older kids get every experience the younger children have now. Recently one of my oldest children returned home for a visit. He saw Lucky Charms in the pantry and did a double take. My rule for a lot of years was that I would not buy chocolate cereal or cereal containing marshmallows. He looked at me and said, “Mom. You’ve changed.” I said, “Yes. I have.”

I usually blog about autism or FAS but occasionally I like to talk about something else. If you liked this post then you might find the following to your liking as well. What Does A Good Mother Say?

Lost in the Translation

Years ago I met a lady who was preparing to move to a country where they spoke primarily Spanish. While she was still learning Spanish, she had to translate the words in her mind from English to Spanish or from Spanish to English because she “thought” in English. After being submerged in Spanish for a while she told me she thought and even dreamed in Spanish, rarely using English anymore. Her primary language had changed from English to Spanish. That amazed me.

April 2, 2015

English is my first language but I speak one other language. I have become very fluent in autism. Autism will never be my first language but it is my son’s primary language. I have to think fast and translate back and forth in my mind as I listen to my son speak. Autism is similar to English but the dialect of autism we speak is difficult for many people to understand. When a person who does not speak autism comes into my home they can become confused because of the language barrier that will exist for them. They will be able to pick up on many of the words and ideas but not everything, much like the lady who was just learning Spanish when she moved to the country where everyone else spoke it fluently.

My son walks into the room and says, “When there is no cereal, I eat toast.” I think quickly and realize he means that we have run out of his favorite cereal and he is hungry. He would like for me to make him some toast. I know what you are thinking: Why didn’t he just say, “Hey mom, can you make me some toast and would you put cereal on the grocery list?” Well, someone who uses English predominantly might do that. But my son Tate speaks autism as his first language. English is his second language and he just cannot quite master it. He leaves out a lot of details, expecting me to fill in all the blanks. He, like many with autism, believes I am having the same thoughts and feelings he is having. It is very frustrating to him when I cannot speak his language and he has to try and use mine. We often go round and round in circles.

Speaking of thoughts and feelings… the dialect of autism my son speaks does not allow him to put feelings into words. He cannot really let me know he is sad, angry, confused, frustrated, uncomfortable, or disappointed, with words. Recently Tate learned to ride a bike and that has been incorporated into his Physical Education class at school. Having his bike at school makes him very uncomfortable. He likes everything in its proper place. I do not know this because he has put that into words. I know that because he says things like, “It’s illegal to keep a bike at school!” and, “We ride bikes on Wednesdays for six weeks. How long ‘til we bring the bike home?”

First Shave

So, the cereal/toast and the bike at school examples were easy ones. Let me give you another example of just how hard it can be to translate if you do not speak my son’s language. I had mentioned a few times in recent months that Tate was going to need to start shaving soon. That must have made him nervous because he began telling me he wanted to grow a beard. What I did not think about was the only thing Tate knew about shaving was that his dad smears shaving cream all over his face to shave. Tate has sensory issues and I never intended to have him shave with cream and a razor. He hates textures like shaving cream. Had I thought about the language barrier I would have talked to Tate about using an electric razor. I bought an electric razor and he was happy to be shaved.  He has stopped talking to me about his desire to grow a beard now. It’s a good thing. He only had about two-dozen long whiskers.

Just as it is difficult to translate some words into another language, my son cannot seem to translate a few of our English words into his language. In English the word “homework” would be defined as something like: assignments a teacher gives their student to complete outside of class. That word is taboo at our house but not for the reason you might think. It is not necessarily about avoiding the math worksheet or memorizing the spelling words. Schoolwork is work you do at school. But you NEVER do schoolwork at home. THAT is the difference between speaking English and speaking autism. Some of the words or phrases just do not mean the same things.

Then there are all the misunderstandings that come with our language barrier sometimes. This evening Tate’s dad was praising him for doing something correctly. Shawn said, “Tate! You were ‘right on the money.’” Tate looked around quickly and said, “What money?” All those kinds of quotes and sayings have to be explained to Tate because English is not his first language. Autism is. Recently, we were out in the woods close to our home, burning some brush and cutting some firewood. I had a small fire going and Tate was helping me throw tree branches on the fire. I saw he had thrown some of our sticks of firewood into our fire. I said, "Oh Tate, don't throw those on the fire. That is the firewood we are cutting." As soon as I heard myself I laughed. Of course he was throwing FIREWOOD onto the fire. What else would it be used for? I had not explained to him the difference between the firewood we were saving and the tree branches we were burning. Sometimes I just forget the language barrier and assume he understands the language I speak. How could he? His first language is autism and he is still struggling to understand English. 

One of the things Tate says most is, “Oh Sorry.” I hear it all day long. If he drops something he says it. If I have to repeat an instruction he says it. If he changes his mind he says it. If he misunderstands something he says it. If I misunderstand him he says it. Sometimes he says it because he cannot find the right words to use to make me understand what he needs me to understand. In English, “sorry” is an apology for something done wrong. In my son’s language it seems to be an apology for his struggles. I feel so badly for him because, no matter how patient I am with him, he seems to feel the need to apologize. I can’t seem to make him understand that he does not need to be sorry, that he is like a hero to me. He is living in a foreign country where he can barely speak the language and there is no need to apologize for the things he cannot help. Sometimes the language barrier from English to autism and back really stinks. Sometimes I wish I had an interpreter. 

If you liked this post you might like: Speaking Tate's Language or Loosing Language and Finding It.