I dash dreams now to avoid heartache later.

Most of the time I don’t think about the things Sydney cannot do. Most of the time I am just thankful for the things she can do. As a matter of fact, I do not think Sydney regularly thinks about the things she cannot do either, but is also content about the things she is good at. But sometimes….. Sometimes it becomes quite evident that she is unable to do things her peers easily master and she sees it. She sees it and it hurts her. When it happens there is often nothing I can do or say to make it less painful.  

There was a time when Sydney was in preschool, struggling to learn colors and simple skills her peers had long since mastered. Back then I wondered if she would ever read or be able to do simple math. She has come so very far. I try to be grateful for what she is achieving and not disappointed about what she is not. It’s a fine line I walk though because I do not want to stop challenging Sydney and become complacent. I have to remember she would NOT have learned to read or do simple math had I stopped trying to teach her. And so I try to challenge her without making the goals loftier than she can achieve.

Last year Sydney was in the fourth grade. Fourth graders in our district spend a lot of their music class learning to play the recorder. I am sure using the recorder is beneficial for lots of reasons. The students learned how to read music. They were taught about rhythm and how to count measures. It was a lot of fun for them. The first song they tackled was Hot Cross Buns. And they went on to learn many more. And then there was a concert. They played some of the songs they knew that night. When I say “they” and “them” above I mean all the fourth graders…. EXCEPT Sydney. Sydney had finally mastered the first song Hot Cross Buns in time for the concert but that was all. She just held her recorder and pretended to play the rest of them while her classmates whistled away. And she knew. She knew she was the only one on the stage holding a recorder who could not play the songs. No matter how hard she had tried and how much she wanted it she was unable to memorize the fingerings or the order of the notes. Part of the time, even throughout the song she did know, she was not able to keep the holes completely covered well with her fingers so the recorder made shrill squeaking noises instead of the tones it should. During the time leading up to the concert Sydney would often tell me her classmates asked her why she could not yet play the easy song. They did not understand why the things that came easy to them did not come easy to Sydney. I think it is all about the thing called executive function I've mentioned before. Playing music on an instrument takes planning and reading ahead and remembering what comes next. Those things do not come easy to Sydney. How can I explain that to her classmates? How can I ask them to stop asking Sydney, "Why can't you do this? Everyone else in the class can do it." 

The whole experience with the recorder was pretty humbling for us and I was so glad it was over. But I knew it was not REALLY over. Because the recorder is used to prepare the students for band. In the fifth grade, the kids decide if they want to be in the band and what instrument they will play. This summer I touched on the subject several times. I casually mentioned to Sydney that SOME fifth graders would be in band and some would not. I told her she would be one of the ones who were not in the band. I did not make it sound like she would be missing out on anything great, just doing something different. She did not argue. Then school started. The music teacher began talking about instruments and introducing the students to them and allowing them to touch them. And the excited fifth graders all began chattering about band and instruments and Sydney came home telling me of their excitement. I reminded her she would not be taking band class. I gently reminded her how hard it was for her to learn just one song on the recorder. She remembered. But oh how she wants to try again. This time with a much harder instrument. We’ve had several conversations about it together each time her conceding seeming to understand she will be doing something “different” than band. On the way home from school today she once again got into the car chattering about how great it would be to be in the band. She announced. “I know just what trumpet I want to play in the band! It is the flute!” Of course I smiled at her gaffe but was saddened by her unrealistic expectation. Her sisters immediately jumped in with things like, “Band isn’t that fun!” and “Singing in the choir at school is more fun than band.”

Even if I pacified Sydney by allowing her to join the band and I bought her a flute or a trumpet or even a drum, it would only be a short-lived happiness. As the other kids picked up the notes and fingerings and learned what the band teacher wanted from them, she would fall behind. The other kids would notice. Sydney would notice. So, gently telling her that band is not for her may be painful now it is much easier on everyone involved than setting her up for failure. That is what I have to keep telling myself. I dash dreams now to avoid heartache later. 

Note: Sydney's disability is Fetal Alcohol Syndrome. For more about that click here: The F in FAS does not stand for Fun

The F in FAS Does Not Stand For Fun

Recently I asked my readers what they wanted to hear about. A handful asked me to write about Fetal Alcohol Syndrome, what it is, and how it affects Sydney and our family.

One drink is too many.

When a woman is pregnant, any alcohol consumption has the potential to hurt her developing baby. Depending on the week, and even the day, of development and the amount of alcohol that the mother consumes, the baby may be harmed in numerous ways and to various degrees. There is a potential for brain damage, as well as physical deformities. I’ve been told the area of the brain most affected by alcohol is the frontal lobe. The frontal lobe controls impulsivity, judgment, language, the ability to plan ahead, and problem solving, among other things.

Fetal Alcohol Syndrome (FAS) is the only birth defect that is one hundred percent avoidable and completely controlled by a biological mother’s choices. FAS is not curable and the child does not outgrow the damage done. It is a lifelong disability. A child can be diagnosed by facial features and/or behaviors but many doctors will not give a diagnosis without a written statement from the birth mother saying she did consume alcohol during pregnancy. Some, however, will and because so many children with FAS are adopted and so many birthmothers are unavailable or unwilling to help, the doctors who will give a diagnosis without a birthmother’s statement are so appreciated by adoptive parents like myself.

Sydney has physical features that point to FAS. The doctors at Children’s Mercy Hospital (CMH) said Sydney’s eyes, ears, head size, and a few other abnormalities all pointed to FAS. Her extremely high pain threshold, hyperactivity, and other behaviors were indicators as well. Until we began medication for hyperactivity around age seven, Sydney was difficult to keep safe. The medication has been life changing. Sydney still has FAS but taking medication to help with the hyperactivity and her attention span has helped her to be able to learn. She is reading at grade level now! Math is the most difficult subject for Sydney at school. Math falls under problem solving, which is controlled by that frontal lobe.

Many people have asked me how Sydney’s FAS affects us the most. The hardest part for our family has been the impulse control issue. But that may be like saying the hardest part of being blind is not being able to see. Impulse control affects everything. Without impulse control a person does not think before they speak or act. As a matter of fact, if a thought comes into their head, even one that is obviously a very bad one, they may act on it. If someone says, “Don’t touch that stove” then the person with no impulse control is probably going to reach right out and touch that stove. The “don’t” in that instruction does not register but the “touch” and “stove” sure do. Without impulse control a child cannot sit still or focus on anything. Their mind is constantly wandering from one thing to the next. They cannot learn how to solve problems, and sequencing is a mystery to them. They cannot control their behaviors or learn cause and effect, and punishments will not help. It is beyond their control. They absolutely cannot help any of it.

Attention Deficit Hyperactivity Disorder (ADHD) and anxiety disorders like Obsessive Compulsive Disorder (OCD) are often comorbid with FAS. Some children with FAS also have Reactive Attachment Disorder (RAD). Because so many of these disorders have similar symptoms it is hard to know where one begins and the other ends. So many children with FAS are adopted and there are often adoption issues or past abuse or neglect too. Sydney has been diagnosed with FAS, ADHD, and an anxiety disorder.

We are actually very lucky in a lot of ways though. I have become acquainted with other parents in Facebook groups who have children with FAS and I am hearing about horrible behaviors and issues that we have not had to deal with. Things at our house could be so much worse. I hear about kids that hit, kick, spit, curse, lie, steal, threaten, and abuse. We’ve got almost none of that going on. People assume much of it is about environment and Sydney is doing so well because of parenting, but I do not think that is it. Really good parents are dealing with a lot of the kids who struggle so much more in life than Sydney does. FAS is a spectrum disorder and some kids are handicapped in ways others have not been, depending on the amount of alcohol consumed and the time of the consumption. Also, alcohol exposure in the womb affects some babies more than others. I read of a set of fraternal twins who were affected differently by their mother’s drinking. Although both were obviously exposed equally, one twin was much more handicapped in life than the other.

One of the first things I read after Sydney’s diagnosis was that children with FAS do much better in homes with reasonable expectations. I had to learn to parent Sydney much differently than I have parented my other children. In the beginning, before I understood Sydney had a disability, I made demands of her that were unrealistic. Once I understood that she was doing the best that she could do, our lives became so much better. Sydney’s doctor has told me that a good rule of thumb for kids with FAS is to divide their age in half and treat them correspondingly. Of course, they are not all the same and some of these children are functioning at a level that is equal to their peers in many aspects. On the medication for the ADHD symptoms Sydney almost appears as mature as her typically developing peers at times.

I have noticed a few of the parents I have met online seem to be setting expectations for their children that are unrealistic and punishing their children for the lack of impulse control. Holding a child with FAS to the same standard you hold his peer to is unfair and even cruel. No one would consider punishing a deaf person for the inability to hear and a child with FAS should not be punished for the brain damage they cannot help. A child without impulse control may steal and lie on a regular basis. They do not steal because they have a need and they do not lie because they even have a motive to do so. They do it because their frontal lobe is damaged and they are just acting on an impulse. They have no plan. They have no real agenda. They have no ability to think about the consequences of their actions.

Does that mean that we just give up and stop trying to teach our child with FAS? Of course not! We keep trying and sometimes after hundreds of repetitions, we see a new skill mastered or a new lesson learned. But unfortunately, sometimes, even the skills we think are mastered, disappear and we have to start over again because that is the nature of FAS. We take baby steps, set small goals, and celebrate minor victories. Also we do not set our child with FAS up for failure. If a child with FAS loves chocolate and you do not want her to eat more than one chocolate bar then do not leave a package of six chocolate bars on the kitchen counter! If a child with FAS has trouble staying in bed at night then put an alarm on her bedroom door. If a child with FAS hits her baby brother then do not leave them alone in a room together.

There was a time, for a long time, when I was resentful of Sydney’s birth mother. I blamed her and despised her for the life sentence she had given Sydney… and myself. Because truthfully, Sydney’s life long disability will be with me until the day I die as well. I do not really feel that resentment any longer. I only feel pity. I feel pity for a woman who was probably so addicted to alcohol that it controlled her. I feel pity for a woman who was probably in a horrible situation. She had two children already that she was unable to care for adequately and was about to give birth to another that she would be unable to keep. Perhaps she turned to alcohol to ease that pain. I think I probably let go of the anger and resentment toward Sydney’s birth mother about the same time I was finally able to let go of a lot of my unrealistic expectations for Sydney and truly bond with her as if I had given birth to her myself. If you have not already, now would be a good time to read the post I wrote recently called “Falling In Love With Sydney.”

Other posts you might like to read about our life with FAS: Sydney, Age Six and Teaching Sydney.

Find us on Facebook at Quirks and Chaos. Find us on the web at www.quirksandchaos.com

Memories of Our Trip to Russia

If you have not already, you will want to stop here and read the first post about Russia called Falling in Love with Sydney That post led to this one when people asked to hear more about our trip to Russia. This newer post is not so much about Sydney, but the details of our travel. 

While we were in Russia we were often at “the mercy” of complete strangers that the adoption agency had hired as interpreters for us. The interpreters knew all the ins and outs of the adoption process. They helped couple after couple through the process. Most of them spoke English very well and many of them had been to the states before. The whole adoption process had been sort of stream lined it seemed to us. We would go to one office, get the proper stamps and signatures, then take all of those papers to another office in a different building and exchange those papers for other papers with different stamps and signatures. We met some very interesting people and just like Americans, they came in all different shapes and sizes and all different personalities and attitudes. One of the drivers we had was a very tall, muscular man who could toss our large suitcases around like they were small toys. He drove very aggressively and was both gentle and intimidating at the same time. Once, we told our interpreter we needed to find a place to exchange some currency. The interpreter and the driver spoke back and forth in Russian. The driver did not want to take us to the places we had traded money before. Our interpreter said, “We go to the black market.” He “knew a guy” and we drove to a large roundabout with traffic flowing all around us. We saw a man standing on the edge of the median, shifting his weight from right foot to left. It was very cold out and the man had to be freezing. We pulled up and two tires of the car went up onto the curb. Our driver took our money and rolled down the window. He handed the man on the curb our money. The man pulled out a roll of bills so large they barely fit in his hand. He very quickly counted out the bills we needed. Our driver handed us our money and we were off. The whole transaction took only a couple of minutes. Shawn and I must have looked like we were in shock for quite a while after that.  

I believe it was on our first trip when the phone rang in the middle of the night. Shawn answered and it was a woman asking for John. Shawn explained he was not John. The woman said she was in the lobby and wanted to come up to his room. He hung up the phone and we figured it was probably a prostitute. We had been warned about them and thought we had picked a few out of the crowd while we were there. More than once I believe I uttered the phrase, “We’re not in Kansas anymore.”

That first trip, between visits with Sydney, we had a lot of time on our hands. The town the orphanage was in was called a village but was really not very small. We walked around some and found some interesting things to see. There was a fairly large building where people were selling their produce. There was a lot of raw meat lying in the open on tables with no refrigeration. Dogs were wandering around in the building and the smell was pretty strong. I have never been so thankful for the grocery stores in the USA as I was when I saw that market place. Americans are blessed beyond measure.

Our hotel in Moscow

On our first trip to Russia we met a couple on the flight to Moscow. They were on their second trip and were there to finish their adoption. Our paths crossed again on our last night in Moscow. They had their sweet baby girl with them. She was about two and a half and so precious. She seemed very comfortable and well adjusted for having only been with them a few days. She had on a corduroy dress and tights. She was sitting in an umbrella stroller and her parents were sitting across from us on a couch in the lobby of the hotel. The hotel we stayed at in Moscow was a very ornate and beautiful place. There were guards, large men in black suits, standing in the lobby examining everyone who entered or exited through the large area. Their faces were always expressionless but their eyes were continuously scanning. They made me feel safe and anxious at the same time. As we were visiting with our new friends Shawn noticed the toddler grinning and “flirting” with someone behind us. He turned to see one of those tough, no-nonsense guards with a huge goofy smile on his face. The guard had been watching that adorable little girl instead of the adults who were coming and going and his fearless threatening demeanor had disappeared as that sweet youngster beguiled him.

On our second trip to Russia, we left our kids at home sick. One had pneumonia, and the others were coughing. A couple of days after we got to Russia, we began to cough. I was coughing more than Shawn was and he was sure I was coming down with pneumonia. I insisted I did not need a doctor but Shawn was so worried about me he asked at the hotel desk about a doctor. They had a doctor in the hotel! She came right to our room. He had a stethoscope and listened to my lungs. She only knew a little English but after she listened to me a minute she announced, “No Pooh Moan EEYA” and she was gone. It was a strange encounter for sure.

In Moscow we saw many things we were curious about. We noticed that there were often men in uniform standing on the side of the busy street that ran parallel to our hotel. They had sticks or flashlights. They would point at a driver and wave them over to the side of the road. The driver would pull over and show the officer some paperwork and then be allowed to continue upon their way. Shawn noticed that the cars pulled over were usually Humvees and the drivers were usually dark-skinned. We saw other people in Moscow occasionally who were questioned by police officers.

We had been told that it would be best if we did not go anywhere without one of our interpreters, especially in a cab. So, we spent a lot of time in our hotel. Occasionally we met other Americans, some with a child they were ready to take back to the states and some waiting to meet their potential child. We ate most of our meals in the hotel. Meals in the morning were not the same kind of foods we would consider breakfast foods here in the states. There was a buffet of cold cuts and hard breads each morning. We usually skipped lunch to sleep. We never adjusted to the nights and days either trip. We were awake all night and exhausted during the day so we napped all afternoon if we were able.

The Golden Arches

Just a few blocks from our hotel in Moscow was a McDonalds and we walked there two or three times. Ketchup was on the menu. If you wanted it, you had to order it. There was a Hard Rock Café much further from the hotel and we walked there once. They spoke English at the Hard Rock and I felt right at home there.

Matryoshka Dolls from Russia

When we were in Moscow the first trip, we got brave enough to walk down to a very famous area called Old Arbat Street. It was not far from our hotel. It was closed off to traffic and it was an open market. If you’ve ever seen the old Disney move “Bedknobs and Broomsticks” and you can remember Portobello Road, then you can sort of picture Old Arbat Street. I could have spent days wandering around. It was amazing. I was interested in looking at things we could take home as souvenirs for the kids. I would never have believed how many different kinds of Russian nesting dolls there are. I wanted to fill my suitcase with them. We were able to buy the kids chocolate kinder eggs with tiny building sets inside and some other neat things. Venders were aggressive and they were all vying for our business. Many of them spoke English. On Old Arbat there were street performers and we even saw a strange group that was like pictures we had seen of the bald Hare Krishna cult members.

One day and night we stayed in an apartment on New Arbat Street, high above a busy area in Moscow. New Arbat is nothing like Old Arbat. New Arbat reminded me of Time Square in New York City. It was all lit up and new. The crowds were very different. We were able to see down onto the busy street and watch police officers on horseback. They would occasionally ask someone to show them some documentation. We were never stopped and asked but we always had our passports with us. Each time we stayed somewhere we had to have our passports stamped by the hotel. It was to show that we had stayed where the government had been told we were going to stay when we entered the country. Our interpreter told us the stamp was very important to get on our passports.

Both trips to Russia were ten days in length. When Sunday came around the first trip, Shawn and I had a worship service in our hotel room. Between our trips to Russia Shawn had done some looking online and found a congregation of the Lord’s Church in Moscow. He had an address when we returned. I was too sick to go, the weather was bitter, and Sydney was with us, but Shawn was determined to find a worship service. He hailed a cab in front of our hotel with the help of the hotel doorman. The cab took him to the address Shawn had. It was a building where a small group of Christians were meeting. They were so friendly and happy to have him, as any group of Christians would be. The service was in Russian but a young woman sat next to Shawn and interpreted for him. He found out that she had actually visited Kansas before. At the end of the service, the minister returned Shawn to the hotel. It is an experience he will never forget and although I was anxious about him being without one of the adoption agency’s interpreters, he was not afraid. I am so glad he has that memory.  

Before Sydney could leave Russia she had to be examined by a doctor approved by the embassy. He found that Sydney had an ear infection. He wrote down the name of an antibiotic and our interpreter took us to a pharmacy. We were able to get the medicine easily but no prescription had been necessary. Our interpreter explained that there was no need for a prescription for antibiotics there. All we needed was the name of the medicine we wanted to buy and the money to buy it. We later returned there and got some cough medicine because Shawn and I were both coughing. It did nothing for our cough. It was worthless.

The train ride from the Moscow to the orphanage (and visa versa) was probably the worst part of our Russian experience. It was a night train that took ten hours. We were not sleeping at night because our days and nights were flipped. We stayed awake, uncomfortable, the train lurching side to side, and we watched the clock. There was nothing to see. The train stopped often. We avoided the ten-hour train ride once. On the second trip we flew into St. Petersburg instead of Moscow and only had to ride the train for six hours instead of ten. The agency did not seem to appreciate that we asked them to do things differently though. Although our hotel accommodations were always nice and there was never a glitch when we were to meet an interpreter or anyone else, when it came to that train ride, our convenience was not their priority. We really hated that train.

I do have one funny story about the train. The doors to the sleeper cars slid open like a closet door. The bathroom facilities were similar to that of an airplane. It was tight quarters. We are pretty sure that the waste from the toilet and sink flushed right onto the track below us, although we could not prove it. One night on the train Shawn returned from a bathroom break and he was in a real hurry to get back into our room. He had accidently slid the door open to the room next to ours. He walked right in on a large snoring Russian man. The light from the hall shone right onto the man’s face but he did not wake. Knowing he could not make excuses in the native tongue, Shawn hoped no one was going to follow him and demand an explanation. We still laugh when we recall that incident.

The view from our hotel window in the village where Sydney was born was of apartment buildings. We also saw apartment buildings when we drove from one location to another. They were nothing like I am used to seeing where I live, although I am sure there are areas in the USA that are similar. The windows usually had plywood over them. The balconies were boarded up. There was no color and everything looked old, depressed, and dirty. On the other hand, the people we saw were usually dressed very nicely and were stylish, especially in the cities. Everyone seemed to have a cellphone too, just like we do in America. The people we encountered were almost always friendly and polite.

Almost all our experiences were good ones while we were in Russia… if you do not get me started about that train ride. HA. However, I do have one story to tell that I hate to remember. We were expected to give gifts and tips to everyone who helped us with anything at all. The adoption agency staff in the states suggested we take things from here with us that we could give as gifts. They suggested playing cards, hats, or bandanas with the American flag on them, calendars with scenery from America, or candy. We did as they suggested but the people who helped us in the offices with paperwork or in the orphanage did not seem interested in those things at all. We gave our drivers and interpreters tips of cash several times and they were appreciative. One of our interpreters insisted that we needed to give Sydney’s doctor liquor as a gift. Shawn said that we would not be giving anyone liquor. The first time we visited the doctor, we gave him one of the gifts we had brought with us and the interpreter handed him a bottle of liquor from his bag. When we left, Shawn told our interpreter that it had better not happen again. Shawn was very irritated at the interpreter for not respecting our wishes. I was of the opinion that the liquor did not come from us so it really did not matter that much and I did not want to sour our “deal” with the agency but Shawn did the right thing. He did not want our name or our arrangement to have anything to do with alcohol. Ironically enough, in the end, it had everything to do with alcohol, right down to the baby’s birth mother. In Russia, every store we entered seemed to have shelves and shelves of alcohol and small sections of merchandise or food. As much as I hate to see alcohol in my local grocery store in America, I am thankful that it is not nearly as permeating as we saw in Russia.

One of the last things we had to do in Moscow before we went home was to take Sydney to the American Embassy and get her visa. It was an amazing experience. Our interpreter was not allowed to enter the building at all because he was not an American citizen. He left us at the door with our huge manila envelope of paperwork and gave us instructions. We found the room we needed and could not believe our eyes. There were at least thirty other American couples there for the same reason we were. Some had more than one child with them. The stream of people coming through never slowed. We were there for about one hour. I remember thinking maybe there was only one day a week for this particular step to be done. Surely this many babies were not adopted hourly, every day, all week long. When I asked I was told that it was that way all day long, every day. Less than twenty four hours later, we were on a plane with a lot of those same people. All those babies that were once in orphanages are in homes now. I am so glad so many were able to find homes before the ban on adoptions to the United States.

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