Subways and Peanuts

Riding the Subway

Tate loves flying and especially likes the take offs. So Thursday night, when I asked, I thought he’d probably say flying was the best part of the whole trip so far. But he told me the best part of our trip had been the subway. The subway of all things. That dirty, crowded, noisy, underground train. We had flown, ridden in a NYC Taxi, taken a ferry, seen the Statue of Liberty, and caught sight of a lot of the things he knows from all his movies, but the subway was his favorite.

On the Staten Island Ferry

The highlight of Thursday for most of the family was seeing the statue of Liberty. The statue of Liberty was huge for me. HUGE. Like it has been on my bucket list my whole life. But as wonderful as that experience was, I had one just as amazing (for me) sitting with Tate in the St Louis airport. We were waiting for our next flight, and I sat, astonished, watching Tate devour honey-roasted peanuts he’d gotten on the plane. I exclaimed, “Tate! You like peanuts?” He said, “Mom, I like peanut butter so I like peanuts.” Knock me over with a feather. I had tried that tactic with him many times over the years: “Tate, peanut butter is made from peanuts. Try them. You’ll like them.” He won’t let me use crunchy peanut butter on his peanut butter sandwiches. He eats plain m&ms but never peanut m&ms. But, he was eating those peanuts and acting like it was no big deal. This is a kid that for many years only ate about ten things total. He just does not normally nonchalantly tell his mother he now eats things she does not know about. Wow. He told me he had tried peanuts in the fourth grade when someone brought some to school to share. And then there was this other thing that happened while I was sitting in the St. Louis airport with Tate while he ate peanuts. And this one is probably much bigger than the first. Tate said to me, “Want to hear something funny? These are peanuts but there is no pee in them.” And he began to laugh. He told me a joke! A joke! He made up a joke. And although it was the kind of joke a five year old would tell and it was a potty joke, it was a joke. My kid with autism told me a joke. And what did I do? I said, “Tate, we don’t tell jokes like that. It is not nice to joke about pee.” And then I texted my best friend, Tate’s behavior consultant, and my husband (who was off buying us lunch), because I had to tell them how cool it was that Tate had told me a joke. And because they understand autism, they all got that it was a really cool thing, bodily fluids or not.

This was post two of our travels. If you have not already, go read post one.

Flying With Autism

Flying with autism can be a challenge. We have only attempted it twice. Five years ago we went to Seattle, Washington. I was not a blogger back then but I remember the trip going fairly well and the airport staff being very accommodating. We were nervous about getting through security without a meltdown so we practiced “going through security” at home a few times before the trip and we read a social story about airports and the whole process. Tate was eight years old, and although he was big for his age, he still was identifiable to everyone as a child. At the time he was just getting over five-years of anxiety that revolved around his shoes. Taking his shoes off in public was a big deal, a really big deal. But like I said, he was beginning to outgrow that and we practiced at home. He knew exactly what to expect and he did a fantastic job.

This time I hoped things would go just as smoothly. We talked at home about what to expect. We watched a video online that was supposed to prepare children to fly. Tate was confident he was ready to fly. Just as I have found in many other situations though, how well things go often depend on one single employee’s attitude or behavior. One person can mean the difference between success or failure.

At the airport this morning, as we passed from the unsecure area into the screening area, I coached Tate through the removal of his coat and his shoes, which he did as slowly and methodically as he does everything. There is no rushing Tate. He was holding up the line. People behind us were patient and I was pretty sure they could tell he had a disability. They might have even heard me talking to the guard who stamped our boarding pass only seconds before. The guard had raised his eyebrows a little when I accompanied my six-foot tall son up to the counter to help him, so I explained, “This is my son. He has autism.” I had been afraid the guard might ask him for an ID because of his size, not realizing he is only thirteen. Tate becomes more socially awkward than usual when he is in unfamiliar surroundings and put on the spot.

Once Tate got his shoes and coat into bins and onto the rollers, I realized he was wearing a watch. I asked him to take it off. He did this, slowly. The people behind us were beginning to get bins and go on around us and that was fine. No one was critical. In fact, most smiled at me as I apologized for being “in the way.” And then, one of the guards, an older man with a full head of gray hair, began barking at Tate and I to speed it up and move along. I looked up and said, “We are doing the best we can. He has a DVD player in his backpack. Should we take it out?” He snapped, “There is no time to take electronics out of the bag now. You are holding up the line.” So…. I put Tate’s backpack into a bin, my computer bag into another bin, slid them down the rollers, and we walked through the scanner. Tate went first and he was beginning to look intimidated. Rushing Tate will automatically slow him down. Tate went into the scanner. I modeled for him how he should raise his hands. As soon as he was on the other side, he began asking me for his watch. I went into the scanner but in my rush to stay with Tate and appease the annoyed guard, I neglected to remove my own shoes, so I had to go back out of the scanner and put my shoes in a bin, me on one side and Tate on the other, him asking me to find his watch. I apologized to the guard and explained that I was frustrated because of another guard’s rudeness. She knew exactly what I was speaking of and apologized to me for his behavior. I made it through the scanner to help Tate who was very nervous about that beloved watch. Guess who was now on the other side of the scanner now too? The nice gray headed man! And he was loudly asking who had left their things on the rollers. Of course the things he referred to were Tate’s. The guard was rushing us to move faster. I helped Tate grab his shoes, coat, and backpack, and we moved off to the side. I showed him I had his watch and I shoved it into my pocket so not to hold up anyone who did not want to wait while he slowly put that watch back on his wrist. Priority was getting those shoes back on and finding the rest of the family. I grabbed my own things. My shoes had just come through the machine. I had easily found my coat and my shoes, but my computer bag was nowhere to be seen. It should have come through right after Tate’s backpack. Tate was still worried about that watch and I needed to catch up to the rest of the family so I actually forgot for a few seconds that I was still missing that bag and walked away. After we found the rest of the family I exclaimed, “My computer bag! I forgot it!” So…. back I went to the security screening area. There was the same gray-headed guard, holding up my bag and asking loudly, “Whose bag is this?” I thought, “Seriously. There are six or eight guards working here. And I get to deal with him again!” I told him it was my bag and apologized for leaving it. He asked if there was a laptop inside and I told him there was. He asked why I had not removed it from the bag when I sent it through the scanner. I told him that he had told me that we were holding up the line and that I did not have time to remove electronics. He snapped that I had only asked about a DVD player in a backpack. I took a deep breath and I said, “My son has autism. I was trying my best to help him get through security but you were pushing us and trying to hurry us so it was hard to deal with both him and you. You were rude to us and my son was moving as fast as he could move. We would have gone through faster if you would have been nicer.” He grumpily replied, “There was a long line behind you” as if that totally excused his rudeness. I noticed that other guards were listening and he did too. I was glad. I’m not so sure he was. He removed my laptop from my bag, scanned it with a wand, put it back into my bag. He handed it to me without another word. There were so many things I wanted to say but instead I muttered, “Thank you.”

Flying 

So, when you ask how Tate has handled our travels so far, I would have to say, with the exception of ten minutes of intolerance from one grumpy man, a small ‘bout of anxiety over his watch being off his wrist for mere minutes, and the fact that I forgot to bring his chap stick after I assured him I had it, Tate has had a great experience. Did you know the same lip balm you can buy at Walmart in Kansas for about one dollar costs $4.25 in the St. Louis airport? Considering the hours it took to get from Kansas to New York City and the many people we have come in contact with, one intolerant man, a few minutes of anxiety, and the inflated price of a chap stick, has definitely not put much of a damper on things for him or any of the rest of us.

Building Tate's Friendships

People are so amazed that my son with autism has friends and I get that. I marvel at it myself. The very description of autism is about as far from the word “friend” as a person can get. Words like: aloof, detached, and indifferent, are descriptive of autism, right? So how can a kid with autism have a friend or be a friend?

Below are the components that were used to create the friendships Tate has. This may not work for everyone with autism but these are the things we did.

Kiindergarten

Inclusion: Tate was in the classroom with typically developing peers for most of his day in grade school. His peers became very familiar with his behaviors and his needs. In Junior High Tate spends a lot more of his day in an individualized education setting because he works at a much lower grade level than his peers. However, the relationships developed in grade school are still being nurtured often in various settings.

Education: This one is HUGE. We never hid Tate’s diagnosis from his peers or their parents. When Tate did things that seemed odd the kids could ask questions and they were given age appropriate information. I asked Tate’s teachers to read books about children with autism with their class. When people are given correct information and educated they are not left to come up with their own version of the truth. Tate was never thought of as “weird” because his classmates and their parents were educated about autism.

Social Skills Coaching: Tate had full support at school. An adult was constantly giving Tate instruction in social skills. On occasion, members of Tate’s IEP team would suggest Tate did not need support on the playground but instead needed free time (which would have been used by Tate to pace alone and stim). I insisted the playground was a crucial time for him to receive coaching. This playground coaching played a large part in developing friendships. Tate was pushed to play with peers and peers were encouraged to include him in games and to give him support themselves. The Paraprofessional was able to stand back and watch as the other children engaged Tate in play sometimes.

Lunch Buddies and Other Social Skills Programs: We had organized social skills programs for Tate. The speech teacher came into Tate’s classroom twice a week in the early grades and organized board games and other activities for Tate and a few peers to engage in together. She coached the peers on how best to interact with Tate while she was coaching Tate on how to behave appropriately. We started a lunch buddy program in second grade and it was invaluable. Today, social skills are still a part of Tate’s daily education.

An Advocate: Many of the programs and supports Tate needed to develop friendships would not have been put in place had we not hired an advocate. She occasionally observed Tate at school, made recommendations, and always came to our IEP meetings. Our advocate was more knowledgeable about autism and the law than many of our IEP team members. She could often provide data to support her reasoning and she requested and received things for Tate that I had never thought to ask for. An advocate is very expensive but ours was worth every penny. Note: If you cannot afford an advocate my advice would be to get a Wright’s Law Book and study.

Tate and his buddy Jordan
Sixth grade

Willing Peers: Without kind, willing peers Tate could not have friends. We had willing peers with compassionate parents who allowed their children to be pulled from other activities occasionally to be peer models for Tate.

Tate and his Paraprofessional Richie
Fifth grade

Teachers Who Were Vested: We have had some rock star teachers involved over the years. Not every teacher was willing to work hard or believed in what we were doing but most did. The speech teachers have usually been the ones to drive the lunch buddy program for us but others have helped too. Tate’s Paraprofessionals had to shoulder the majority of the responsibility much of the time as they are the ones who spend the most time with Tate. They reinforced all the social skills lessons into all aspects of Tate’s day. Without all these hard-working adults we would not have gotten far.

Parents Willing To Work: No one’s involvement is more important than the parent. We badgered administrators and teachers for programs we thought really mattered and we were not afraid to ask for things they had never done before. We paid for an advocate. We provided books about autism and social skills to teachers. I dropped donuts off at the school occasionally for the students participating in the lunch buddy program. I volunteered at the school and tried to keep an eye on Tate and his progress from the sidelines. I had to invest time in getting to know other parents. Other parents were not going to be willing to allow their children to have play dates with mine if they barely knew me. I had to “borrow” their kids after school occasionally and go to the park or get ice cream. And during those times I was the social skills coach. Early on Tate was not thrilled when I arranged play dates but I did it anyway.

Tate (in purple) and his buddy Ethan (in blue)

Patience: It did not happen over night. Tate was in class with some of these kids for four years before he could tell them apart or remember their names. It took ages for Tate to develop reciprocal relationships with these kids and it took a lot of hard work. Tate had to be taught really basic social skills and those had to be reinforced for years. His peers had to be educated about autism and the adults in Tate’s life had to utilize every opportunity they could find to work on social skills. At the beginning a lot of Tate’s relationships were very one-sided. The peers were nice to him but he was not interested in them. We did not give up. I can honestly say that Tate has friends his own age now. He is able to actively participate in friendship. I did not know if we would ever get here but we have.

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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