Friday, January 30, 2015

Falling in Love with Sydney

My middle child, my beautiful second daughter, had a birthday two days ago; and on that day I reminisced about the day of her birth as I do every year. I remembered the day of labor, the joy I felt at holding her for the first time, the hospital stay and the wheelchair ride out to the car to go home. I love reliving those memories every year on my children’s birthdays. The elation of holding those newborn babies for the first time made every minute of the nine-month pregnancy and the hours leading up to the birth worth it all.

Tonight is the eve of my seventh child’s eleventh birthday but I cannot think back to her birthdate and remember anything. I was not there. And so I think of other things. Tonight, my husband and I got out the box of keepsakes from our trip to Russia. As we looked through the paperwork written in a language we cannot read, the photos, the trinkets, and souvenirs, we remembered the baby girl who we travelled across an ocean to meet.

In the box, I saw the very first picture we ever received of a six and a half month old baby girl. She is naked in the picture and I can see the painful rashes on her skin. What I felt for the baby in that picture was not love but it was compassion. The journey to adopt was so much different than giving birth. There was no baby inside of me moving around and kicking. A picture hanging on the refrigerator was just not the same.

Our trip itself was an exhausting adventure and our first meeting with the baby they called Anastasia was neither magical nor defining. I had no idea what to expect. I had heard from a few people about their adoption experiences and their “love at first sight” feelings. I hoped for that.

The orphanage doubled as a small hospital. We had an opportunity to talk to the doctor there through an interpreter before we met the baby. He went over her medical history with us. When the nurse walked into the room and handed me “my baby,” I took her. I was curious, and hopeful but I was also physically exhausted from the trip and intimidated by the foreign language and the unknown. The tiny girl seemed groggy and without personality. She stared at me with huge eyes and she was stiff. We spent about an hour with her that day. I had anticipated that I would make some sort of “connection” with the baby at some point during that visit but I did not. And because I did not feel love, I felt guilt. It was not a good start to a happily ever after.

Meeting Sydney
We asked if she was always so lethargic. The nurse assured us the baby was usually very active but it was past her naptime and they had kept her awake for us. She had fallen asleep just minutes before we arrived and then they had to wake her. I was skeptical but that is my nature. The baby was eight and a half months old but she was not cooing or attempting to crawl. She had reflux and spit up often. She was covered in a rash the doctor called dermatitis. We would later learn it was scabies. All the babies had them. When it was time to leave, we left without any feelings of anxiety over leaving “our baby” behind. More guilt. The second day we visited, things went much better and the baby was very active. She did not try to engage us, or act interested in us, but she was moving around a lot, possibly too much. She could turn a complete three hundred and sixty degree turn in my arms and she was attentive to her surroundings. She did not want to be held and she definitely did not want to be cuddled. The third day we spent time with her was the worst of the three experiences. This time we were in a playroom setting with about a dozen children, our baby being one of the youngest. So many of the children were active at a level that I thought age appropriate compared to the baby we were there to see. Many looked a lot healthier too. There was one little one though that was a mess. Her eyes were running and her legs did not work so she dragged herself by her arms over to us. We were told she had multiple medical problems. She wanted us to hold her so badly which was ironic because Anastasia (Sydney) wanted nothing to do with us and we really wanted to hold her. If Shawn stood up with the baby lying back in his arms, swayed back and forth, and sang, she would lay still and stop fighting to get out of his arms. I remember him singing hymns to her. That day was the last day we were to see her before we had to make a decision. It was like a crossroads and we had no idea which direction was the right one. We told the doctor how concerned we were by the baby’s indifference. I knew after all my experience that an eight-month-old baby should be very interested in people and toys. The doctor admitted that the babies were not held often. He told us he would hire someone to give Sydney one hour of interaction each day until we returned if we left him one hundred dollars. Shawn handed him a one hundred dollar bill and we left.  

We left that evening for Moscow. It was a ten-hour train ride in the dark on a very slow moving train. We had a sleeper car but the blankets smelled like dust and the train shook from side to side and made a lot of noise. Shawn and I had our days and nights mixed up and we were exhausted from lack of sleep but we spent the night talking. What did we want to do? We felt no real connection to the baby. Weren’t we supposed to be crazy in love with her? We’d visited her three times. 

We spent the next couple of days doing paperwork in Moscow. I had nagging doubts but I also had hope and compassion for a baby who was lying in a crib day after day with no one to love her. If I brought her home, would I love her or would I just be taking care of her, without love? I told myself repeatedly that the worst day in our home would be better than the best day in that orphanage even if I never really fell in love with her. I knew I could provide her a good home. My worry and frustration were not helped when we met two American couples in the hotel in Moscow who told of the amazing relationship they had with the babies they had adopted that week. They seemed to feel like I had felt upon giving birth to my biological children. I wanted to feel that for Sydney! But I did not. Why?

We flew home and I was so torn. I spent the next seven weeks going from excited about the prospects and the future to frightened I would never fall in love with the baby we were about to bring home. She deserved a mother’s love. I hoped that our adoption day would somehow be like the birthing experience I had with my biological children and that would be the day my heart would fill with love.

While we prepared for the return trip, our kids got sick. They were dropping like flies, and days before we were scheduled to leave for Russia, one went into the hospital. He had pneumonia and it was contagious. I was so afraid to leave the kids but if we missed our scheduled court date we would have to wait another eight weeks and that meant the baby would have eight more weeks of less-than-ideal care. And so we left our kids in the care of grandparents and a doctor in-the-loop and prayed it was the right decision.

The travel was just as exhausting the second time as it had been the first. Thankfully, at the orphanage we noticed a change in Sydney. She was much more engaging and seemed interested in things she had not before. I attribute that to the one hundred dollar bill and the hours of one-on-one attention she had gotten over that seven weeks while we were gone. I have said many times, “That was the best $100 we ever spent.”

The first order of business upon our return was obtaining a passport for Sydney and our interpreter made all the arrangements. Sydney had never been in a car before. She had possibly never been outside the hospital/orphanage before. We returned her to the orphanage for the night, and the next morning was our court date. We had done so much paperwork and jumped through so many hoops by that point, I remember thinking that being pregnant and going through labor and delivery had been much easier than adopting this baby. Going before the judge was one of the most intimidating things I had ever experienced. Shawn, however, was not nearly as nervous. One of us was supposed to speak to the judge about our desire to adopt and be able to answer questions. The interpreter seemed to think it should be me that spoke but I was a wreck. Shawn did a brilliant job of speaking to that judge. We had to both verbally promise the judge that Sydney would be taken care of and she would have every opportunity available to her that we would give her if she had been born to us. After court we went to the orphanage to claim our child. It was very exciting and yet surreal. All that time, all that paperwork, all that travel, and all that money, and it was time to claim the baby. There was no pomp and circumstance at the orphanage. We walked in and changed her into an outfit we had brought with us and strapped her into a car seat. Everyone involved seemed to be in a hurry to get us in and out of there. I had the interpreter ask how much Sydney was used to eating in one sitting and how often they had been feeding her so I would know what she was used to. The nurse pointed at the eight-ounce mark on a bottle I held and said, “Fill it up.” I had seen the brown liquid they were using in their bottles on another visit and it looked and smelled awful. It definitely was not formula. The nurse told me they fed the babies on a schedule and they ate three times a day. I wanted to cry for those babies. No wonder Sydney had reflux. She was fourteen pounds, being fed eight ounces, spitting half of it up, and then having to wait six hours or more until it was time to eat again.

Sydney's foot from scabies in the orphanage.
The first time I can recall my heart feeling anything resembling the beginnings of a mother’s love was in the hotel right after we left the orphanage for the last time. We were waiting for our train-ride to Moscow. We had just a few hours and it was time for Sydney to be fed. I knew from experience that it would be better to feed this tiny baby four ounces of formula every two to three hours verses eight ounces, three times a day. When she saw the bottle she began to hum. Humming was about the only noise we had heard from her so far. She drank the four ounces and whined when it was gone, holding tightly to that empty bottle. I stretched out beside her on the bed, her eyes huge and terrified of her unfamiliar surroundings. I whispered softly to her and watched her fall asleep. I knew I had a long way to go but I think that was the beginning of the beginning of love for me. I knew the potential was there and I felt immense relief. (On the new schedule and smaller feedings of baby formula, she stopped spitting up all together.) 

My love for Sydney was such a slow growing thing and I felt so much pressure because it did grow so slowly. The overwhelming love I had felt for my other children from the first second I held them would take a long time to grow this time and there was nothing I could do about it. The trip home was stressful. We landed in Paris late and ran through the airport to make our next flight, Shawn carrying our bags and me the baby carrier. We walked on as they were trying to close the doors of that plane. Sydney actually travelled very well. She slept for hours. When we landed in the states our next flight had already left so we were stranded in Atlanta. At that point we did not even care that much about where we were as long as the people around us were speaking English and we could drink the water. One of the most amazing things happened when we hit the ground in Atlanta and walked onto American soil. Sydney went from an immigrant with a visa to American citizen. Sydney received a letter from President George W. Bush less than one month later, congratulating her on her citizenship.

When we got home and settled in, the real challenges began for me. Sydney did not want to be held and would have preferred to not even be touched unless it was on her own terms. My instincts told me to hold her anyway, even while she fought to get down. Night after night I would rock her and sing to her while she screamed (yes, she found her voice soon after we got home and it was loud.) Shawn and the kids would say, “She does not like to be held. Why don’t you put her down?” I would tell them that I knew she did not like to be held but I had to teach her to like it. I knew she was not bonding with me and I was not bonding with her those first few months either. It scared me. I wanted to love her but I was not feeling much love yet. I was still often telling myself that the worst day at our house had to be better than the best day at the orphanage but I was beginning to doubt that some days. It often seemed that Sydney and I had waged war against each other.

Sydney rocked much of the time and I insisted that she needed to stop. I would gently remind her every time I walked past her, "no rocking." I knew it was something she had needed in the orphanage to stimulate her brain but it was no longer needed. I did not want it to be a lifelong habit. It did not take long and the rocking stopped. That was one of the easier battles I fought with her. 

The scabies she had brought home were very hard to get rid of and we treated them over and over. She could not sleep well at night because of the itching and she spent the first hour of every night screaming ‘til I thought she’d lose her voice. She did not want to be held and there was nothing I could do to comfort her. Sydney could only turn her head in one direction, probably because of months of lying in the same position in the orphanage. Our Pediatrician showed me how to do stretches with her to help her turn her head. I was gentle but she hated it and it must have hurt. The kids thought I was torturing her and they looked at me like I was evil when it was time to do those exercises. I'm sure those exercises did not help Sydney's opinion of me. 

After months of not really bonding, as I knew we should, I suspected that Sydney might have Reactive Attachment Disorder (RAD). Shawn and I were concerned because Sydney seemed no more interested in us than she was in complete strangers. She would have never looked back had someone taken her from us. We had tried to teach her to show affection and she had started giving kisses, to us, to the furniture, to the walls, to the floor… We took her to a child psychologist. He watched her, listened to us, and told us that Sydney did not have RAD and was beginning to bond with us. He noticed the way she watched me from afar and used me as an “anchor” as a toddler should. He also noticed something else that had concerned us. Sydney did not seem to react to pain the way she should. She bumped her head hard when she was there that evening and never even winced. The doctor told me to keep doing the things I had been doing. He thought that I was doing the right thing by insisting she let me hold her and rock her. It was the right thing to do. 

It was a rough first year. Sydney was hyperactive and had to be watched every minute. We have a two-story home and bedrooms on both floors. The living room downstairs was carpeted and the rest of the house on the first floor was not. All her toys were in the living room and I taught her that the living room was the only place for her. The carpet edge was her boundary. Everyone thought I was mean because I did not let Sydney have free rein, but I was just trying to survive. They made me feel so guilty but I NEEDED Sydney to have boundaries because she was almost impossible to keep track of and had no sense of danger. There was just no impulse control. She did not have an age appropriate understanding of the word "no" either. If one of the kids or her daddy let her roam the house for a little while then it took me a couple of days to reteach her that the living room was where she belonged. They would all leave for school and work and if I turned my head for a minute, I would lose the baby. She did not answer when I called and had little interest in what I was doing like my other toddlers had. My other children had always been under my feet or hanging on my leg while I tried to do my daily chores. Not Sydney. I might find her eating a plant, surrounded by 250 tissues she pulled from a box, dumping a bag of tiny Legos, or swinging from the chandelier. She was so tiny and so busy. I was always afraid she would get hurt. I had never seen anything like the level of activity she possessed and she had four brothers who had been pretty active. Sydney was a biter and often bit our two youngest boys. They were always afraid to let her get too close. Those bites hurt! The older kids started staying in their rooms more and more to avoid the chaos that Sydney caused. There were times I doubted the decision to adopt. There were times I resented Sydney for all the work and worry she was causing me. There were times I felt like we would never really care for each other the way we should. But there were also times when I would see a little progress and hope.

The day we went to Children’s Mercy Hospital (CMH) for an appointment with a geneticist was huge for me. She was two years and two months old. She had been with us almost sixteen months. I had taken Sydney to several doctors during that time. We went to CMH because an eye doctor saw something he thought was alarming in Sydney’s retinas. He sent us to an expert at Children’s Mercy who recommended genetic testing. The doctors that spoke with us about the genetic testing spent some time with Sydney and then asked us many questions. They took detailed measurements of Sydney’s limbs and facial features. When they were finished, they told us they were almost certain Sydney had Fetal Alcohol Syndrome. My first thought was, “But in Russia they promised us Sydney’s birth mother did not drink.” After the doctors pointed out all the physical evidence they saw of FAS and the behavioral signs everything made so much sense. FAS and RAD, which I had suspected months before, have many of the same signs. I cannot put into words the why, but that appointment and that diagnosis made all the difference to me. That war that Sydney and I seemed to have waged no longer mattered to me. I was able to stop feeling so much guilt about why she was not responding to me the way my other babies had. That diagnosis gave me an excuse to stop feeling so much pressure to be a mother that had all the answers. Sydney would not ever be able to respond to the same kind of parenting my other children had. She could not understand consequences. I needed to learn how to parent differently. I had promised that judge in Russia that I would take care of Sydney and give her every opportunity that my other children would have. I was moving heaven and earth to help Tate learn and develop so I would do the same for Sydney. I could suddenly understand many of the whys. 

I cannot tell you what day or month or even year that I knew I felt exactly the same kind of intense love for Sydney that I do for my biological children. It crept up on me and grew quietly. I can tell you that it took a long time, much longer than I had hoped it would, or expected it to. I can tell you that it was not an instantaneous thing like it was for my biological babies. I can tell you that I would do a lot of things differently if I could go back and talk to the me I was ten years ago. I can tell you that Sydney used to be a child I was fond of and took care of because of a promise I made and because I am a good person who tries to do the right thing but it is not like that anymore. I still remember the promise I made but it is not what motivates me. Now it is love that motivates me. Because I now can honestly say I am “in love” with Sydney, head over heels.  

And that is the very long answer to the questions I received about Sydney’s “gotcha day” and the amount of time it took me to bond with her.

Update: I got a lot of questions about our trip so I wrote a follow up. Find it here: Memories of Our Trip To Russia

The question is sometimes asked, "Would you do it all again?" I answer that in this post: Would I do it all again?
Still cannot get enough? Sydney, age six

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Monday, January 19, 2015

Scripting Sponge Bob

One of the things we lived with long before Tate got his diagnosis of autism was Echolalia (repeating words, phrases, or whole dialogues). Although we had no idea it had a name or it was a sign of autism, we thought it odd. Tate would repeat the last word of my sentences or sometimes my whole sentences. He often repeated what he said too and sometimes the second time it was whispered.

Tate, age 3
As a toddler Tate said, “Mommy” all day long and I would usually answer with, “What?” He started calling me, “Mommy What.” He echoed my “What” right into my name for months. I thought it sounded really sweet but still had no idea why he did those strange little things that his five older siblings had never done.

When Tate was a little older he would repeat advertising jingles, lines from cartoons, or pages from picture books randomly throughout his day. I have heard others recently calling this scripting instead of echolalia. Either way it seems to be very common in kids with autism.

I follow a video blogger called Autism Hippie. Look for her on Facebook. Her son Mike scripts all day long and he starts early. He wakes his mom with a line from a movie or a video game and she hears the same line for hours at a time sometimes. One of my favorite blogs is Conversations With Casey. It is also a video blog. Casey does not script verbally much but scripts in a different way. He memorizes the movements of a musician in a video or of an actor in a scene of a movie and then repeats the actions over and over with the audio in the background. His violin “playing” fools people sometimes. His violin is silent but Casey sure looks like he is a virtuosos. I would highly recommend finding this blog on Facebook as well.

Tate has scripted for years but these days he usually only scripts with one-liners and it is not always evident to people what he is doing. He can cleverly fit lines from movies into situations where they often apply. Sometimes they are very random though, unfitting and odd. When Tate pipes up with a one-liner I can sometimes recognize it as one he has used before or I can even remember the movie it came from. Sometimes though, I cannot. Often I will hear it later in a movie he is watching and say, “Aha!”

A few days ago I got a phone call midday from Tate’s resource room teacher whom I appreciate very much. She is wonderful with Tate and she is a great communicator. She called because Tate had said something very inappropriate to his paraprofessional and she thought I should know how they handled it. Tate had randomly said, “Let’s get naked.” Of course this kind of thing could become a real problem in a public school setting! Tate’s teacher and I knew his comment was not of a sexual nature but also knew others might not be so understanding. Tate needed to realize that he could not ask people to “get naked.” She said he was very receptive when she told him that he could not say that anymore. He said he would not. I told Tate’s teacher that I was sure he probably got the line from a movie. I hung up the phone and a few minutes later it rang again. Tate’s teacher decided she would ask Tate if his offensive line had come from a movie. Without missing a beat he said, “Sponge Bob, Season 3.” I searched online immediately and up popped a scene in which Patrick said, “Let’s get naked.” to Sponge Bob.

This incident reminded of a book I had read by Sean Barron, an author with autism who has written about his experiences. He reminisces in one of his books about being young and memorizing lines in shows that were followed by canned laughter. He’d try out the line on his classmates or teacher the next day but rarely get the response he wanted. He did not understand that not all of those lines were funny when out of context. I am not sure that Tate is doing the same and delivering lines to get laughter but he is delivering lines so that he can interact with people. When Tate said, “Let’s get naked” I can be fairly certain that he had no intentions of doing so and did not expect his para too either. Sponge Bob’s answer to Patrick was “No” in the episode. I imagine Tate fully expected his para to say, “No” and then Tate would have had a “conversation” under his belt for the day.

Tate, January 2015
When you meander through life not understanding how to start a conversation, yet wanting to engage people, I can imagine that scripting would be what kids like Tate would turn to. I think Tate was just trying to “converse” with his para and this is how he tried. Of course, it could also have just been a random stim too. Tate does do a lot of stimming and scripting is a stim. I could just inquire of Tate as to why he asked his para to get naked. But Tate cannot tell me the whys. And if I did ask it would cause him anxiety because he cannot answer. If I try to have a serious conversation with Tate he usually sees it as discipline and becomes very stressed. I say it often, “I’d love to get inside that head of his for a while and see what is going on.” ha

This is a much older post, also about Echoes. You might like to read it if you want to read more about echoes or stimming. 

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Monday, January 12, 2015

Locked Out

Have you ever stumbled into a situation so comical that you find yourself looking around for the cameras, wondering if you are the target of an elaborate practical joke? It happens to me quite often lately but recently a couple of my children had a funny experience I wish I had on film.

San Francisco trip, 2014
A couple of months ago, my husband and I had the opportunity to take a three-day vacation with some friends, and no kids. I love my kids. I love spending time with my kids. My world revolves around my kids. But I REALLY loved the idea of having a three-day-long date with their dad. Getting a sitter and going out without children was a rare occurrence for a lot of years and being gone overnight was nonexistent. However, these last few years, our oldest daughter has been able to return home on a few occasions and stay with our younger children so we can get away for a few days at a time. Even though our daughter knows all the younger kids’ routines and her siblings are content to stay with her, I still get nervous and leave lots of lists and instructions. I know it is hard for most moms to leave their kids but I definitely got a double portion of that trait somehow.

Levi, Tate, and Sydney, 2008
So, this past trip, we were supposed to be at the airport at 5:30 AM and the airport is over an hour from our home so we decided we would say bedtime prayers with the little ones, put them to bed and start our vacation one night early in a hotel next to the airport. As we drove away, heading for the airport, I remember feeling almost guilty because I was not as anxious about leaving the kids as I usually am.

The Smith household, Dec. 2014
And this is the part I wish I had on film. It turns out before we had gotten more than a few miles from home our daughter had locked herself out of the house. She stepped into the garage to put a cat out and the door shut, locking her out. But she did not panic. She knew her 16-year-old brother Levi was still awake. She was able to get his attention through his upstairs bedroom window. He came down to let her back in through the garage door but he also stepped out into the garage and the door shut. Now they were both locked out. The two left inside, the two I blog about with special needs no less, were both in bed. Levi went into the backyard and began hollering Tate’s name. Tate was in bed but not yet asleep and he heard Levi through his upstairs bedroom window. Tate came down and let them both in.

Tate and Regan, 2012
So when I talked to my daughter less than an hour after I’d left home, she was able to tell me this humorous story about being locked out of the house TWICE ALREADY! Thus my peace of mind about getting on that plane the next day was reinforced. NOT! The next day when his older sister picked him up at school, Tate greeted her with “Lock yourself out of the house today?” If we mention the experience now in Tate’s hearing he gets a big smile on his face and wants to tell us how he saved the day. Tate got such a kick out of coming to the rescue and his siblings’ blunder that I’m sort of glad they had the whole experience. I just wish there would have been cameras.

This is another one of those times that I wish I'd have caught on tape:  Stinkin' Dogs and a Traumatized Rabbit

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