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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Heart Attacks and Loose Teeth

Sydney has become more aware of her peers and their opinions this year.  Because of her lack of impulse control and her inability to determine right from wrong due to the Fetal Alcohol Syndrome (FAS), it can be pretty concerning. I always request that Sydney be exposed to positive peer models and the amount of time spent with children who have behavioral issues be minimized, but in a public school setting this is not always possible. Sydney has been acquiring lots of interesting knowledge this year to say the least. The school year began with her coming home with gravel in her pockets. She believed those ordinary rocks to be valuable.  It seems a boy on the playground told her they were fossils because they had little bits of color in them. When I asked what they were fossils of she explained the boy claimed they were the knee bones of Indians. That was the first week of school so I knew from the start it was going to be a very exciting school year. The same boy has given her a lot of “facts” about dinosaurs, insects, and weather that are not exactly accurate too.  I’m not sure if he believes the stuff he tells her or if he just makes it up as he goes along, silently laughing as my gullible daughter soaks it all up.

The most recent bit of misinformation that Sydney believes to be true is something she learned from a little girl in her math group. Apparently, a person can die of a heart attack if they are exposed to too much math in one sitting. This little girl claims her own dearly departed grandmother suffered “death by multiplication tables”. I’m having a hard time convincing Sydney that it couldn’t happen. 

Another tooth gone

The same sweet little darling classmate lost a tooth last week. Sydney could not be outdone. She came home and insisted she needed to take out a tooth. Unfortunately, there were no loose teeth in Sydney’s mouth. She wanted me to help her get one of her front teeth out and I explained it was a permanent tooth. She said, “I don’t mind. I don’t want that one.” It took two days of prodding and wiggling, but she found a baby tooth with just a little play in it and she got it out. It still had quite a bit of root on it and left a large hole but she was thrilled. She’d lost a tooth just like her friend. The reason she has so few teeth left to lose? This actually wasn’t the first time something like this had happened. In kindergarten and first grade the teachers had charts for the students to add a sticker to if they lost a tooth. Sydney loved the attention that came with putting a sticker on the chart so much she was willing to suffer the pain of pulling teeth that really were not yet ready to be pulled. The alcohol Sydney’s birth mother consumed while pregnant really did a number on Sydney’s threshold of pain.

Sydney has come home with some very entertaining stories lately. With help from her teacher, I’ve been able to unravel a few mysteries. Sometimes Sydney’s stories are like onions and I have to peel back a few layers to really get a good picture. Sydney and a friend were disciplined at school a couple of weeks ago for name calling in the classroom. The two girls had been picking on some of the boys. Sydney’s teacher wrote a note on the weekly calendar that the students bring home each week to let me know that Sydney had been in trouble. I never saw the note. When the teacher looked for my reply the next day, she saw it had been erased! I spoke very seriously with Sydney about it. Sydney claimed she did not erase the note. Her friend and partner in crime did it. I am pretty sure there is a “Leave it to Beaver” episode in this story somewhere.

Because of the name-calling incident, Sydney’s teacher decided the two girls would be better off sitting further apart and she moved their desks. Sydney confided to me right after school that day that the two girls had a plan to right “the injustice” of such a “cruel” punishment. They were going to DEMAND a meeting with the teacher the next morning and insist she allow them to be reunited. Sometimes it is very hard to keep a straight face when Sydney is telling me these things. I find third grade drama extremely funny. I could hardly wait to hear the next installment when I picked her up the following day. I had emailed the teacher to warn her of the coup attempt so she was ready for them. I so wish I could have been a fly on the wall during the girls’ plea for justice. Sydney never did understand why their demands were not met.

 

I’ve been overjoyed this school year because Sydney is making friends. Last year she was shunned by the girls in her class and bullied by the boys. This year she has had fewer of those sad sagas and is a lot happier. I suppose it could partially be the personalities of the different students in her class this year but I also see her maturing. She still has all the same disabilities but she is gaining some “street smarts” that she really needed. I know public school takes a mom’s innocent little five year old, exposes them to all kinds of words and ideas that they would be better off not knowing. I’m not really glad that Sydney or any of my other kids have ever come home to ask me what some filthy word meant. I’m not really happy that Sydney or any of my other kids have ever come home to tell me a filthy joke that they did not understand the meaning of. Those kinds of things I WISH I could have sheltered all my kids from.  However, by age ten, Sydney should have caught on by now that others do not always have her best interest at heart and that sometimes following other people blindly will get her into trouble. The FAS left her with so little impulse control, she has a difficult time thinking before she acts. If a classmate suggests an activity (even one she has been warned about), she does not (cannot) stop and consider the consequences usually. I believe she is beginning to develop some self-control that we have not seen before. So, I suppose when I count my blessings I should count her peers (even the ones with questionable intentions) as a blessing to us.

Here's a similar post if you want another great post: "Just Another Day in Paradise."

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A Sparkling Personality Has A Price

When my first six babies were infants, they were held for hours upon hours. They were talked to, sung to, cuddled, and snuggled often. Almost every noise they made was acknowledged and responded to, if not by me, then by another family member. My babies were socially educated from the minute they were born and they developed personality very quickly. Of course, the first five babies were typically developing and soaked up everything around them like a sponge. Tate did not. He could not. His brain was not able to understand much of the communications or the social world around him. I saw some of the evidence of this early on and one thing that was different about Tate from infancy was that he did not like to be sung to. He did like to be cuddled, held and rocked but he wanted silence. Unlike my other babies, he did not enjoy hearing mama sing. My voice isn’t the most beautiful voice but I can carry a tune and my other children have enjoyed being sung to immensely. Not Tate.  The louder I sang, the louder he cried, so I stopped singing and learned to rock quietly. If he was hurt or upset and I gently said “shhhhh” as I tried to comfort him he took great offense. The “sh” sound was NOT allowed either. I had to warn people not to “sh” Tate and once in a while one of us forgot and he would wail. It was one of the many quirks we lived with and I chalk it all up to autism. 

This blog post isn’t really about Tate and his quirks today though. I have been thinking a lot of about the “what-ifs” concerning Sydney lately. Sydney laid in a crib for most of her first ten-and-a-half months. She was not talked to, sung to, cuddled or snuggled. She was not carried around. She was changed and fed on a schedule with a bottle that was propped. In an earlier post I discussed her feeding schedule and how I changed that immediately upon taking custody, thus helping her stomach issues tremendously. What if, she had been fed appropriate amounts for her small stomach in much more frequent feedings? What if she had been changed as needed, bathed more often, not tortured with the itch of scabies, talked to, held, and carried around sometimes? What if she had not been neglected? So many of Sydney’s behavioral issues are blamed on the diagnosis of Fetal Alcohol Syndrome, and probably rightly so. However, would the FAS be so severe if the neglect had not been there? I will never know for certain because I will never get to go back and give Sydney those hours and hours of interaction that my first babies were given. Would Sydney have been much like Tate: unable to understand, in spite of all the attention? After all, her brain had been damaged by alcohol in the womb. Of course I believe Tate would be so much more handicapped if he had been in Sydney’s situation for the first ten months of his life. So therefore, the reverse must be true. I doubt there are too many people who would argue. We saw how fast a little attention could result in a lot of progress before we had even finished the adoption process. 

When we were in Russia to visit Sydney in October of 2001, one of the first things we noticed was her lethargic personality. I said more than once to Shawn “she doesn’t have any sparkle behind her eyes.” We assumed she had brain damage but did not know much about FAS. We did ask if her birth mother had consumed alcohol and were assured that she had not. The second time we visited Sydney in the orphanage we were with her in a playroom full of children. Sydney was probably the youngest in the group and she was not usually included in playgroups. That was for the older children who were crawling and walking. At eight-and-a-half months Sydney wasn’t sitting up, crawling or even cooing or jabbering. She was silent. When she cried, she just hummed. During that visit we met a girl working at the orphanage who was from Germany and could speak English very well. I was able to ask her some questions and she asked the nurses and interpreted their answers for me. We had noticed a baby, close to Sydney’s age or a little younger, sitting in a bouncy chair across the room. That baby was very interested in her surroundings, trying to make eye contact with anyone who would look her way, and she was making a lot of happy noises. I asked the nurse why there was such a difference between that baby and Sydney. She told me that Sydney had never had a visitor, while the other baby had a mother who visited her and fed her a bottle every evening. THAT baby had known a mother’s love. Sydney had not. We told Sydney’s doctor later that we were concerned about Sydney’s lethargy and the fact that she was not being given any individual attention. He told us if we left him one hundred dollars he would hire someone to hold Sydney and play with her for an hour a day until we returned for her on our appointed court date, two months later. Shawn immediately handed the man a $100 bill. When we returned in seven weeks to take Sydney from that place, she was a changed child. She had personality that we had not seen before. She was active and much more engaging. She also had seven new teeth. When we had visited her two months prior she had none. She still didn’t make any noise other than a hum but she had some “sparkle.” Shawn and I will always say that it was the best one hundred dollars we ever spent. Of course, that fee was a drop in the bucket, compared to all the other adoption costs but it was one that jump-started Sydney’s personality and slowed down the effects of all the neglect.      

If only those first ten months of learning and growing emotionally and intellectually had not be stolen from Sydney. If only she had been handed to a mother who would love her and nurture her from day one. Every baby deserves it. 

Sydney, before we added the "sparkle."  

Would I do it all again? Will you be surprised at the answer?

I have been hoping to find other parents that blog about Fetal Alcohol Syndrome (FAS) so that I could learn from their experiences. I love to share what has worked and has not worked with my kids so others might benefit from my experiences, as well. It can save a lot of time when you are not “reinventing the wheel” and when many minds are looking at the same problems, there are often many solutions offered that one person alone might not have thought to try. At the very least, I thought finding other bloggers who are willing to share, would help me to see that others are surviving FAS and I will too. Encouragement is what I need the most to keep on doing what needs to be done. Sydney is a lot of work and I sometimes get discouraged. Last night I found a blog called “When Rain Hurts” written by the mother of a boy named Peter, adopted from Russia. He has FAS and his parents have been through far more than we have.  She is a brilliant writer and her blog is going to be published as a book. The link is http://whenrainhurts.wordpress.com/

I found Sydney had many things in common with Peter and I have many things in common with his mother. She said she was left feeling inadequate after reading many books about autism and adoption. I am often left wondering if some authors are being truly honest when they say they have completely accepted what they cannot change or that they embrace their child’s disability and would not change anything. Then I suffer extreme guilt because I CANNOT feel that way about my own children and their disabilities.  I do not embrace autism or ADHD or FAS. I HATE autism, ADHD and FAS. I would do almost ANYTHING to change those things about my children and we have worked hard to minimize the symptoms of these disabilities. We spend a lot of money on medications that help and a lot of time on interventions.  I am not bitter but I hate the disabilities my children have. I can see the people they would have been without their disabilities and the adults they will become because of their disabilities. It is frightening to think about the things they will struggle with, the friends they will and will not have, and the kind of care they will receive when I can no longer care for them.

I have read many books about autism and met many parents of children with autism in the past few years. Several of them say that they would change nothing about their child because the disability is part of what makes them who they are. I have a hard time understanding that. I would do anything, give anything, or give up everything if I could “cure” Tate’s autism or Sydney’s FAS. One mother, who told me she would not eliminate her son’s autism even if she could do so, had her son enrolled in a very expensive discrete trial program at the time. Did she want to minimize the disability that she had just told me she cherished as part of who her son was? I had to bite my tongue hard that time. See my  post called: Celebrate Autism? for more about this. 

Once in a while people ask me if I would do it all over again. Would I still adopt Sydney? Honestly, I think I would. I think I would because I love her with all my heart. I think I would because I cannot bear to think about where she would be or what she would be doing if she were still in Russia. I think I would because she has a soul and I want to teach her about God and His plan so she can go to Heaven. I fear that someday my answer will change. I've read that thirty percent of people in prison had birth mothers who drank. That scares me. If a person has brain damage that keeps them from being able to make good decisions, how are they to obey laws? If a person has little or no impulse control, how can they be kept safe? 

No one has ever asked me the same question about Tate, perhaps because he is not adopted. If I could turn back the clock, would I still have planned one more baby, the year before Tate was born? No, I would not have. There, I said it.  I would not have conceived a baby, knowing he would have autism. Autism has drained me emotionally, mentally, physically, and financially. Having said that and before the hate mail starts pouring in: I adore Tate. My world revolves around Tate. I am not a patient person, but I almost never lose my patience with Tate. He brings out the best in me. He gives me a lot of happiness and he has taught me a lot of things. Although I have been drained in many ways, Tate and autism have helped me to grow spiritually. I see things much differently than I used to and I am a much better person than I was before Tate was born. The main reason I would not have purposely conceived a baby knowing he would have autism doesn’t have as much to do about what autism has done to me, as it has to do with what autism has done to Tate. I see him struggle to fit in and know he will never be able to understand the world around him.    

I’ve said it before and I will say it again:  The phrase “Everything happens for a reason” is one of the most ridiculous things I have ever heard. God does not give people autism and God does not cause women to drink so their babies will be born with a lifelong handicap. That whole idea is absurd. It is true that we can make the best of a bad situation and grow stronger because of it but there is no divine reason a child is born with a handicap. (My "rule" #11.)

  

None of the above thoughts or feelings really matters in the end. Both kids are here. Both kids are mine. Both kids are handicapped. Both kids are loved. Both kids bring me and others so much joy. I really do love my life. 

We have seen so many good things happening. We didn’t know how much progress Sydney could make and she has already overcome some of the problem behaviors we worried the most about. Something that concerned us a lot when Sydney was a toddler was her inability to differentiate between family/friends and strangers. She was completely comfortable in the presence of a crowd of unfamiliar faces and she sought the attention of complete strangers. Long after she should have bonded with us, she would reach for people in stores, wanting to be held. I knew if someone had picked her up and walked away with her she would have never looked back. She would not have missed us at all. She did not seem to understand where she belonged or that she needed me. Anyone could step in and take care of her needs and she would not have noticed her mother was not around. I’m not sure when she finally understood or cared who she was with. It probably happened very gradually and I was too busy worrying to notice. In my opinion, her attachment took far longer than it should have but it finally has happened. She is too trusting still but she does now have the same kind of reactions my other children would have had in new settings or around unfamiliar faces. She even acts shy occasionally and that is not something we would have seen when she was a toddler or a preschooler.

I’ll end with a couple of my favorite Sydney-isms from this week. On the way to school, Sydney saw a dog beside the road. She said "Mom, on your way back home, stop and ask that dog what it is doing." (Yes, she was serious.) The same morning, right before we left home she asked her dad "How much is 36 minus 6?" He said "30". Sydney replied "Nope 240. That one must be too hard for you Dad." 

If you enjoyed this post and would like to see a more current one about these two great kids, click this link: Mommies Don't Give Their Kids Away.

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