Never A Dull Moment

My three youngest kids are so very different in many ways but they have a few things in common. One of the things I have noticed over and over lately is that they all three know a lot about nothing. I am not saying they do not know much. They know so much! But, a lot of the things they know about are things that are not important to anyone but them.

Tate loves movies. He even loves watching the credits and he memorizes the names of the actors and voices in many of his favorite movies. If he gets started talking about a movie he likes, he will not be finished with his commentary until he has told you what year the movie was released, who the main characters are, who did the voices for any of the animated characters, and what the storyline was. If there is a soundtrack to the movie then he will tell you the names of the songs and who sang them. Why can’t he do that with information that he needs? Why can’t he memorize facts about things that are REALLY important? Why?

Tate is not the only one that has an aptitude for remembering worthless information and disregarding the stuff that really matters. It never ceases to amaze me how many bits of useless trivia Levi can spout in a day! Last week I remember him telling me that $20 worth of dimes, quarters, or half-dollars would all weigh one pound. Google it. I did. It’s true. But, why does he know this? Did you know lightening is five times hotter than the surface of the sun? Or, when bombs were dropped on Germany during WW2 some of them caused tornadoes of fire? And, this is outrageous: there is a fungus in the Amazon that releases spores that attach themselves to ants. The spores control the ants and they become like zombies. The ant host climbs as high as it can and then the spores are released from the ant’s exploding head to attach to more ants on the rainforest floor below. Wild I know, but true. Yesterday, in the pool I learned from Levi that a person’s neck is exactly half the size of their waist. Today he told me that only about two percent of the water on earth is fresh water and the rest is salt water. I have checked all these trivialities and he was spot-on for everything he told me. Now here is one I could not confirm: Did you know Ninjas only engage in hand-to-hand combat as a last resort?

Unfortunately, Sydney’s trivial “facts” are not nearly as accurate as Levi’s, or even Tate’s. I believe her rule of thumb is “I make it up as I go along.” In addition, Sydney seems to believe that saying something out loud will make it true. If she doesn’t know something she just improvises. Today she told me that a spider is not dangerous unless it has bumps on it. I believe her exact words were, “If you see a spider with bumps, it is dangerous; but a spider with bubbly bumps could carry you off.”

Sometimes Sydney’s outlandish stories are almost believable when she is giving the specifics. Her imagination is tremendous! She often fools people, myself included. Sydney frequently refers to her imaginary horses or dogs and tells us details about them. Occasionally my husband will exclaim, “She did it again. She convinced me to look toward the pasture to see the horse she was telling me about.” A few days ago Sydney was waiting at the front door for the arrival of imaginary guests from California. When she finally hollered, “They’re here!” I found myself almost come out of my seat so I could go and greet her friends.  She has a gift. With this talent I wonder why she cannot remember the things we need her to as well.

If you’ve ever heard the expression, “Never a dull moment” I think it describes my life to a t. These three keep my life interesting. I cannot say I wouldn’t want it any other way exactly because I would so love to be able to take the disabilities away from Tate and Sydney. However, I can say that I love my life and I enjoy my kids, quirks, chaos, and all.

If you like this post, you might also like this one: Scripting Sponge Bob 

We have a website now! We are at www.quirksandchaos.com Or you can find us on Facebook at Quirks and Chaos. Like what you read? Want to become a follower? Click on the Google Friend Following gadget on this blog. It's over on the right side and asks you to subscribe. Or you can add the URL (the web address in your search bar) to your Reading List. You can do that by clicking the plus sign in front of the URL. Thanks! 

Teaching Sydney (or TRYING to)

Impulse control. You probably have not thought much about how important it is to people unless you are close to someone who has very little self-control. The frontal lobe of your brain is the part that helps you stop yourself from doing or saying the inappropriate things that you think about. Believe me, impulse control is extremely important. Without it a person will constantly be in danger. They will break rules and laws. They will lie. They will lose friends as fast as they make them. THEY DO NOT LEARN FROM THEIR MISTAKES.

The frontal lobe of a person’s brain is damaged when they are exposed to alcohol in the womb. Fetal Alcohol Syndrome is 100 percent preventable. A huge percentage of the people in our prisons have FAS. It is no wonder. When you have FAS you barely stand a chance in our society. Sure, many of the children are adopted into homes with good parents. But, mom and dad can keep a child safe for only so long. They do grow up and they still have FAS. They still have no impulse control and they still need constant supervision.

Sydney’s lack of impulse control affects us every day. It shows up in so many ways. Sometimes it is funny but usually it is not. This morning I told her to stay in her room until 9:00 while I showered and dressed. She came into my room at 8:55 and said, “It’s 9:00.” Me, knowing I had five more minutes said, “It is?” She responded, “No, not really.” Then she asked me where her popcorn was from last night. I told her it was in the kitchen. She said, “I just looked.” I said, “So you left your room?” She said, “No I didn’t leave my room but I went into the kitchen to look for the popcorn and it wasn’t there.” She tattles on herself quite often and then talks in circles trying to fix what she uncovered, contradiction in every sentence. Sometimes I think she believes I am an idiot. Sometimes it is hard not to laugh right out loud when i should be scolding her too.

A few days ago she had lifesavers and was trying to open the packaging. She was with her daddy in his truck. He asked what she had and she quickly responded, “Oh, you wouldn’t like these” trying to convince him that she shouldn’t have to share. She forced the package open and dropped the first one in the floor. She said a word that society would not consider a curse word but one our family does not use. Shawn frowned at her and shook his head saying, “We do not say that.” She immediately tried to convince him that he heard wrong and what she REALLY said was “I’m missing out on that one.” He managed to keep a straight face, barely.

Doctors have told me that Sydney will not learn from her mistakes and I have seen that consequences do not really teach her much but I keep trying. A few mornings ago I told Sydney she could go upstairs and play Nintendo in her sister’s room if she did not wake her brothers who were asleep in their rooms close by. She assured me she would be as quiet as a mouse. She went upstairs and two minutes later I heard her singing at the top of her lungs. I told her she could not play Nintendo for a few days. She can tell me WHY she cannot play Nintendo and she can tell me she won’t do something like that again but she will. I know she will.

Sydney loves flip-flops. Flip-flops are almost as important to her as the air she breathes. The winter months when I hide them (yes I have to HIDE them) are torturous to her. A week before school was out we had a cold rainy morning. Sydney was very upset that I wouldn’t let her wear her flip-flops. I insisted she wear socks and shoes and take a sweatshirt. She asked if she could take her flip-flops in her backpack. I told her she could not. She asked why. I explained again that it was a cold day and I wanted her feet to be warm. When I picked her up at the end of the day, she was wearing flip-flops. It didn’t even occur to me she would have snuck them into her backpack. I have watched her do things like this for nine years and it still shocked me that she would openly disobey like that and not anticipate any consequences. I took all her flip-flops and put them up for a week. I believe it was the longest week of her life and she cried about it several times. Will she learn from it? Well, I know she will REMEMBER it but I do not think it would deter her from doing it again.

This past weekend we went to a little rodeo in a small town nearby. There was a fenced-in play area with four of those big bouncy houses and slides next to the arena. Five dollars got you a ticket to come and go all evening. Several times throughout the evening I allowed Sydney to go jump for five or ten minutes. The medication she takes for ADHD had long worn off and sitting in the stands was asking too much of her. (See? I’m a reasonable person.) It was hard to keep track of her among all the kids coming and going out of those houses but I managed. The last trip in, I watched as she ran over to a mom with a toddler. Sydney LOVES babies and I predicted quite accurately what I was about to witness. I was not close enough to intervene before it happened though! The mom was helping the toddler bounce on a corner of one of the play sets. Sydney crowded in between the child and her mother and tried to take over as caregiver. The mother was so surprised she actually turned the toddler over to Sydney for a few seconds before she realized what she’d done and regained custody of her baby. I grabbed Sydney and was too flustered to come up with words. This time I asked her Dad to explain what she had done and why it was inappropriate. He did. She listened but I honestly do not think she understood a single word about why it was not okay to walk up to a stranger and try to take their baby away from them. Sigh.

At the rodeo

Last evening I witnessed her doing a similar thing but it was not with a baby (thank goodness). A friend of ours was over and playing a hand held game when Sydney came over and crowded right it. She began touching the screen and intervening in the game without an invitation. If I had not stopped her she’d have had that video game in her own lap or been in the lap of our guest with her own body between that game and the owner. I can explain and explain but she just cannot help herself. If she sees something she wants, there is no willpower for her to use against those desires. I can only imagine what her teen years and adult life will be like. It is a constant worry for me.

I know Sydney can learn rules and abide by some of them but I’m not sure why some are easier for her to obey than others. We have a pool and she never goes near it unless she is given permission. She is able to behave herself (for the most part) during worship services. She doesn’t hit other people or tantrum. She is polite most of the time. Her ability to abide by some rules and not others has to have something to do with her ability to plan. There is that frontal lobe again. Being able to think ahead to the consequences of your actions based on past mistakes is controlled by that frontal lobe. Impulse control is managed by the frontal lobe. Rules seem so much harder for her to obey when there are other children involved. She can go a long time without getting into any real trouble but add a peer and she is going to find all kinds of ways to make that kid holler. She’s quick at finding ways to push their buttons. She invades their space. She plays much better with children younger than her. A six year old is almost perfect, but only one, not two. Although she is ten, age six is about the level she functions at herself. We are so lucky in that we live out in the country. A neighborhood full of children (and adults) would have brought so many challenges with it and so many dangers. Sydney’s playmates are her family members. Oh, and a dog, several cats, two calves, and a gentle old horse. She spends hours outside with those animals and her dolls. Sydney’s imagination is one of the most active I have ever known. Our dog and one of those calves have an amazing bond with Sydney. They do not care how many times she invades their space or how much she talks or how loudly she talks.

Sydney and Pepper

We almost never say “no” when Sydney wants something to eat. Number one: her preferred foods are healthy. Number two: the doctor tells us to push her to eat because she needs to gain some weight. Sydney still tries to hide food and lie about food. I have told her over and over there is no need because she can eat almost anything she wants, anytime she wants. One of the only rules I have is: no food the bedrooms. I often do find food and wrappers and dishes in her room but I do not impose any consequences for it. These issues surely cannot be from her memories of the orphanage when she was probably hungry, because she has no memories of the orphanage. But food issues could stem from anxieties, according to her doctor. I cannot imagine trying to live without the ability to fully control my impulses. What a confusing place the world would be. Trying to understand the rules and abide by them without the damage to your brain is hard enough sometimes when you are little. This little girl has a disability that was 100% preventable. Alcohol to a brain is poison and exposing an unborn baby to alcohol is unconscionable.

Past articles about Sydney: Saturday Morning with Sydney and Life with Sydney

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What is Autism? (or) Why Does Tate Act That Way?

The following is what I would hand to a Junior High or High School student to read if they asked me to explain autism. The Center for Disease Control has just come out with new numbers and the rate of autism is 1:66. There is probably almost no one left that does not know someone with autism. It is important that people understand a little bit about this disorder. I wrote this with Tate in mind and not all of these things would apply to EVERY person with autism.

What is autism? Autism is a disorder that affects the way a person thinks. A germ does not cause autism. Autism is not a disease. People do not “catch” autism. A person with autism thinks much differently than a person without autism. When you THINK differently, you ACT differently. Being different is not a BAD thing to be but sometimes being different is a HARD thing to be.

There is a saying that goes like this: If you meet one person with autism, you have met one person with autism. That means not every one that has autism acts exactly alike. Even though people with autism are not just alike, they often have a lot of similarities.

Albert Einstein was a brilliant man. Many people believe he had autism.  He once said, “Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.” This quote really hits the nail on the head. We cannot ask a person with a disability to perform as if the disability did not exist.

When most children are small their brains are like sponges, absorbing all kinds of things. They are always taking in new information and watching people to see how they behave. Children should be learning from the world around them. The brains of children with autism are not soaking up the information around them. Everything they learn has to be taught to them differently, in a much more structured lesson. It does not mean they are not just as smart as other kids. Actually they are sometimes VERY smart. They just learn differently.

Kids with autism can barely tolerate some of the things that seem perfectly acceptable to the rest of us. They may hate to be touched, or the opposite and like lots of touching. A small flickering light that most people can ignore could have the capacity to totally captivate the attention of a child with autism. A noise out in the hall that you barely notice might keep them from being able to concentrate. A scent that you find appealing has the potential to make a person with autism gag. If you ask a person with autism to taste a new food, there is a pretty good chance they will say, “no!”

What if everyone talked faster than you could think? Imagine living in a world that you did not understand. Imagine your teacher was speaking in a language you did not understand. You were still expected to do the schoolwork and while you were busy working, the school bell started ringing and wouldn’t stop. Even with the loud noise, you were supposed to concentrate on the assignment. Oh, and the whole time, there were bees buzzing around your face, the room was way too hot, and your shirt was made of sandpaper. Now imagine your teacher asking you over and over, why you had not gotten the assignment done? All your classmates finished. They got the instructions in a language they could understand. They never heard the school bell going off at all, and they did not have one bee bothering them. They thought the room was the perfect temperature, and their clothing was very comfortable. Remember that fish that should not be expected to climb a tree? How about that student that should not be expected to perform as if he did not have a disability?

People with autism are often called “concrete thinkers” and they have trouble imagining things the way the rest of us do. When they are young pretending is not something they learn to do without help.  Thinking about what will be happening tomorrow is not easy for them. As they get older they have trouble mastering many of the concepts they need to understand in order to succeed in school. A concrete thinker will probably need to use visuals with their math to help it make sense. A concrete thinker might be able to define for you what a policeman is and what a jail is for but he will not be able to explain ideas like justice or freedom.

Communication is not easy for a concrete thinker. A person with autism might not understand that a word can have more than one meaning. For example, if you heard someone say that a football player ran ten yards you would picture him on a football field. A person with autism could be picturing a man running through a neighborhood, jumping fences and dodging swing sets, as he ran across ten lawns (yards). Then there are idioms and other ways of saying things that make no sense to a person with autism. If you say, “He got cold feet and chickened out” then a person with autism might picture a barefoot man standing next to a chicken in the snow. Top all that off with puns and sarcasm when we say the opposite of what we really mean and communication becomes very complicated for a concrete thinker. As you go through your day listen to all the language around you. If you hear things like, “It was a piece of cake” or “He pigged out at lunch" think about the confusion a kid with autism would be having understanding what is being meant by these things.

A person with autism will probably speak differently than you do. Their voice may sound odd. It may seem stiff or sound monotone. It is sometimes hard for a person with autism to organize their thoughts and express them. They may use words that seem strange and their thoughts may be strung together in a way that does not make sense to you. Some people with autism are unable to have a conversation with give-and-take. They state facts or make comments but they do not seem to be interested in your participation or opinions.

A person with autism might talk about unusual things or a topic that interests them for extended periods of time. Maybe they are interested in movies, video games, computers, castles, trains, vacuum cleaners, geography, calendars, presidents, trees, insects, or another topic. A person with autism finds it easy and enjoyable to focus on something they are interested in, but very difficult to focus on anything they are not interested in. That makes it very hard to learn new things. Here’s an example: Tom is so interested in volcanoes that he can name almost every active volcano in the world. He can tell you all kinds of statistics about volcanoes and lava. However, Tom cannot seem to remember anything at all the teacher has told them in history or science unless it involved information about volcanoes. Not every person with autism has special interests like this but many do.

Most people are developing “theory of mind” before they enter kindergarten. This theory of mind is just the understanding that other people are thinking things that you may not be thinking. They may not like the same things you do and they may really like things that you do not care for. Understanding that other people do not think exactly the same things that you do is pretty important. Without this understanding it is really hard to make friends and maintain relationships. People with autism do not understand the teamwork of friendship so they need a lot of help from people who are willing to become their friends.

Repetitive behavior is an issue for people with autism. Repetitive behavior can seem very odd. Often when a small child has autism they like to watch things that spin or they drop things and watch them fall over and over. A child with autism can spend so much time doing these things that they miss out on many opportunities to learn new things. Spinning things and watching things drop are only a couple of the things that children with autism might find entertaining. These and other behaviors are called “stereotypic behaviors” or “self-stimulatory behaviors.” Sometimes we just call them “stims” for short. A kid with autism might like to pace the floor, walking on their toes with a sort of bounce to their step or make the same noise over and over. Perhaps they wiggle their fingers or even flap their whole arms. When they are engaging in these stims it seems to make them feel better. They do these things when they are excited or stressed or just bored. It will be hard to get their attention on something else but it is good to try.

Stress is a big part of the day for a kid with autism. Kids with autism prefer a schedule and they have a need to know what is coming up next. Transitions from one activity to the next cause them stress. Surprises can make a person with autism very anxious. Having a routine makes life easier if you have autism.

People with autism have trouble looking at others’ faces. When you talk to a friend you look at them. You watch their expressions. You can see if they are paying attention and looking back at you. You would be able to tell if something you said made them angry. If they seemed bored or were looking away then you would understand that you should change the subject or find a different friend to talk with. Making eye contact is a very important social skill. People with autism have to be taught social skills that just came naturally to the rest of us.

Along the same lines as watching a person’s face and expression, people with autism have trouble figuring out what a person is looking at. Have you ever noticed that when someone seems excited or upset you look at their eyes to see what they are looking at? Then you follow their gaze to see where they are looking. These are the kinds of things that a person with autism has trouble doing. Some people call it “thinking with your eyes” because we usually look at what we are thinking about and most of us use our eyes to communicate many things. People with autism have to be taught to “think with their eyes” but to most people it just comes naturally.

Because a person with autism has trouble looking at faces, it means they cannot always identify a person by their face. You might sit beside a person with autism for the whole school year and then run into them in the community after school but they cannot recognize you. Not all people with autism would have this difficulty but many would.

Sometimes when a person with autism is speaking they sound rude. They probably do not mean to be impolite and have no idea they are not being nice. It does not help to be rude in return. They will not learn from it. It also probably does not help to ignore the rude behavior. If a person with autism seems rude, and you would like to help, it best to gently tell them their words seemed rude and explain why. Do not go into a long explanation but if you can explain in just two or three sentences a better way to say what they said, or better tone of voice to use, you might be able to help them learn.

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I am not sure you can really explain autism to a child much younger than five or six years of age because they themselves are just developing their own theory of mind and understanding that everyone is different. When a child is very young and a parent knows they will be exposed to children with disabilities I think they should probably just tell them that everyone if different and that is okay. Then remind them often to be kind to EVERYONE, even the kids who seem different than the rest.

I have a very simple description of Tate and his autism that his teachers’ used to present to his classmates each year when he was in elementary school. I have revised it several times over the years. It started off much simpler when it was being read to first graders. See attached: 

Loving Chaney

Tate was our sixth child. He was born in 2001 and long-before we knew he had autism, we decided our family was complete.  Shawn started his own business that same year and we felt like our plates were full. I was secretary, receptionist, and dispatcher, as well as wife and mother. Then, when Tate was two, I got a huge surprise. I found I was expecting a seventh child. Unplanned or not, we were THRILLED and I hoped and prayed that I was carrying a little girl.

I had the usual visits to my obstetrician. At the first visit the nurses teased me about my “surprise” and my age. I was forty. At my second or third doctor visit we heard a heartbeat and everything seemed fine. At sixteen weeks we did the normal blood work to rule out all the things doctors like to rule out. I’d done it all before and was not worried. However, this time the test results came back saying the baby had a one in ten chance of having Down’s syndrome.

My doctor was very concerned and urged me to get an amniocentesis. One in ten did not sound that alarming to me. And then I talked to an Obstetrician friend of mine and did some reading. The results normally come back as one in several thousands. My friend told me that test results like mine probably meant my baby had Down’s syndrome.

I prayed over and over that my baby would be born without a disability. I always added to the prayer that I would miscarry if my baby had a disability. I wanted God to have my baby in His care if she was to be born with a disability. I knew that Shawn and I would have no issues with loving a child with special needs. I was just terrified of all the unknowns and the things that would be required of me if I had a child with special needs. I was afraid of all the time and attention a special needs child would take from my other six children. I really did not think I had what it would take.

I refused the amniocentesis because of the risks involved. I was deeply in love with my baby and did not want the baby harmed. However, I did agree to a level two sonogram. The doctor said it would give us some detailed measurements and probably tell us almost for certain whether or not the baby had the measurements that came with having Down’s. The heart was to be examined closely as well as other things.

We left that appointment greatly relieved. The doctor was so encouraging. He believed the baby was developing as it should with no problems. The measurements looked completely fine, and the heart looked healthy. We also got to see that we were having a girl. She moved around and wiggled for us on the monitor and appeared very active and healthy. We had a name picked out and we began using it. Her name was Chaney Nicole. We had about two weeks of absolute joy. And then… I went in for a regular OB check-up. I was a little nervous when the doctor had difficulty finding a heartbeat. The longer he tried with no results, the more afraid I became. The doctor took me down the hall to get a sonogram, and our fears were confirmed. There was no heartbeat. My precious little girl was dead. Less than two weeks before, I had seen her heart beating, her little body moving and I had heard a doctor say she was healthy. I was in shock.

The next morning I had labor induced. One day, I was halfway through my pregnancy and very excited about our new daughter. The next day I was sobbing uncontrollably in a labor and delivery room, dreading the end of the day. All of the nurses were very patient and kind. Because I insisted, they brought in a monitor and we listened for a heartbeat one more time. In a few hours I delivered a tiny baby girl. Chaney was perfectly formed. Her tiny footprints were one inch long.

I could hold her in one hand. She was seven inches long and weighed less than four ounces, although she had weighed almost twice that when we saw her on the sonogram two weeks before. She had probably died shortly after that sonogram that gave us so much hope. Touching and holding Chaney helped me so much. I had been crying for hours before she was delivered, but holding her helped tremendously with the closure I needed. Shawn held things together for me throughout the labor and delivery and about the time my tears stopped, his began. That time we spent with Chaney's body in the hospital was so valuable to me.

It is so hard to know what to say to someone who loses a baby. There is no one-size-fits-all comment for sure. Many sympathetic people came to call after Chaney died. Some said hurtful things without ever knowing it. One Christian friend commented, “God must have thought you didn’t need any more.” This person did not mean to hurt me and probably believed the comment to be true.

Some people assumed that because I was the mother of six living children, losing Chaney would not hurt as badly. I could not understand that. Having the other children around me was comforting, but my loss was the same as any other mother’s loss. Did people think my grief was one- seventh of the intensity of a mother who loses an only child? Would that also mean because I am a mother of seven, I have seven times the amount of love as compared to the mother of an only child? I don't think so.

Two older women from the congregation where we worship had also lost baby girls in similar situations. They each told me their stories and that helped me so much. They let me know that I was not alone. Both of these women had boys when they lost their baby girls and never got the opportunity to raise a daughter. I realized how blessed I was in comparison to those women. I had two little girls at home, as well as boys, when Chaney died.

I was sad for a long time after Chaney died. I think about her often still. I know she is in a much better place than I could have provided, but my arms still long to hold her. Chaney was not my first miscarriage but the others I had were much earlier and did not cause me the amount of grief that losing Chaney did. Perhaps it was the bonding time I had with her. I have felt some guilt from time to time. Did I deserve to be Chaney’s mother? I had prayed that she would die if she were handicapped so I would not have to bear the burden of raising a special needs child. Did God answer my selfish prayer? For indeed it was a very selfish prayer and I had many lessons to learn.

Chaney’s short life did matter. Because she lived and died, we made a decision to “save” another little girl. Several times I had seen footage of international orphanages on news programs. I wanted to give one of those children a Christian home and a mother’s love. My husband had never shared my yearning to adopt a baby. Then, when Chaney died he felt we had already made room for one more in our hearts and our home, and that space needed to be filled. We knew we could not replace Chaney but Sydney has definitely helped to fill the hole that was left in our lives and in our hearts. Chaney was here for a short time and she “paved the way” for Sydney to join our lives. You see, while I was praying that God would not “burden” me with a special needs child, I already had one with autism who had not even been diagnosed yet and Sydney was lying in a crib across the ocean needing a mother to love her. God knew. He knew I could handle a child with special needs. He knew I could handle two. And I believe he knew that I had a whole lot of lessons to learn. I thank God that I now fully understand that children with disabilities are not a burden, but a blessing. 

“…glory in tribulations, knowing that tribulation produces perseverance; and perseverance, character; and character, hope” (Rom. 5:3-4).

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