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."  

Holding onto a "live wire"

My last post mentioned how hard it was to carry Tate when he was little. Here's the link if you are interested in reading about that: A Sack of Potatoes It was equally as hard to carry Sydney but for totally different reasons. Even holding on to Sydney was challenging. She was so hyperactive I could barely keep her from jumping out of my arms. She had no reaction to pain so she didn’t mind if she fell head-first into the floor either. She would spin around and around in my arms so I had to hang on to one of her legs at all times. Occasionally she would throw herself backward, without warning, so I always had to be prepared for that as well.  

Sydney, One Year Old

I had read that a baby who is neglected learns to find ways to stimulate themselves so I knew we’d probably see these kinds of things in Sydney. When a brain is not stimulated it becomes damaged, thus the rocking and other behaviors are used by a baby to keep themselves “entertained.” It is like self-preservation. Unfortunately, the rocking and other behaviors do not suddenly stop when the baby is removed from the neglect. We had to teach Sydney that she no longer needed those behaviors. I provided her with lots of toys and activities. The house was definitely not boring with six older brothers and sisters. I sat beside her and put my hand on her back and said “no rocking” anytime it began. If I walked through the room she was in and saw her rocking, I touched her on the shoulder, reminding her constantly, “no rocking.” It got old but I was determined. Finally, she seemed to outgrow it or maybe she just didn’t need it anymore and it stopped. Throwing herself down violently from a sitting position also stopped over time. I tried to keep her on a soft surface, in the play pen or with pillows behind her so the crash to the floor wouldn’t hurt as badly in the meantime. Those crashes were so hard to watch. Occasionally, she knocked her head on the floor hard enough to stun herself. 

When Sydney came to us, she also sucked two middle fingers. It was adorable. I read and heard from many people that thumb sucking should be stopped at an early age because an older child was much harder to break of it. It was so cute while she was little but I knew that it would not be cute when she was older. I also figured Sydney would have enough to deal with when she started school and sucking on her fingers would be one more thing to cause her to look different than her peers. So…. I began that battle once the rocking had stopped. I felt mean and rotten asking her to take her fingers out of her mouth constantly. I read all kinds of remedies. I didn’t like any of them. I wasn’t going to put hot sauce on my baby’s fingers! During waking hours I was usually able to keep Sydney busy enough to keep the fingers out of her mouth but naps and night time were much more difficult. I tried pulling a pair of her brother’s long socks onto her hands and pinning them at the shoulders.  That worked usually, although sometimes she was able to wiggle her hands out and find those fingers. She really didn’t seem to miss sucking on them when they were not available though. When I look back on those days I still feel so mean, however I would do it again. There is a child I see a couple of times a week this year when I volunteer at Sydney’s school. The child often had two fingers in the mouth. A seven-year-old looks very immature when they are sucking their thumb or fingers during a spelling test. 

Sydney’s had a few other habits we’ve had to break. When she came to us, she picked at the ends of her fingers and toes until they bled. Can you imagine being so bored in a crib that you had resorted to causing yourself pain just so you would feel SOMETHING? I cannot. Keeping her feet covered and putting the socks on her hands helped keep her digits healed. Because I bite my nails myself, I have not been a good example in this area. I feel like a hypocrite anytime I ask Sydney to leave her fingers alone. She rarely causes them to bleed now. Sometimes when she is stressed I see her fingers suffer though. I have blogged before about Tate’s stims and said when we reduce or eradicate one, he often replaces it with another. Sydney does this too. While trying to eliminate the finger-picking, she began chewing on her hair. She came to us with short hair but it had grown quite long in a short time. Her hair was so pretty when it was clean and combed. I loved it long and tried everything I could think of to help her remember to keep it out of her mouth. She would hide and chew on it and she always sucked on it while she slept. She replaced her finger sucking with hair chewing. I had to cut her hair and we still keep it short. As soon as it gets long enough to reach with her mouth, it starts all over again. Just this morning I had to give her a shower and wash her hair before school because I couldn’t get a comb through the sticky hair. 

There are other bad habits and some of them are awful, while some are sort of endearing. I have blogged before about Sydney’s hoarding and the hiding of food. (See my blog post called Hoarding) Then there is the love of mulch and the visual stim she has. She brings every toy, block, pencil, or book she picks up, right up to the tip of her nose so she can spin the item right in front of her eyes. Many people have asked me why Sydney smells everything she picks up. It might look like she is sniffing things because her nose is right there but it is actually a visual thing. She picks something up by the edge or corner, using the tips of two fingers, and barely holding on to it at all, she brings it up to her face and spins it back and forth a couple of times. It looks very ritualistic. If she is building with legos, each and every lego comes up to her face. If I ask her to stop then she is quickly done playing legos. She seems to NEED to do this, much like Tate NEEDS to whisper the last few words of his sentence when he is finished talking to me. Obsessive Compulsive Disorder you say? Probably, says the doctor, at the very least, some kind of anxiety disorder. 

Note:

In my posts I often refer to Tate and Sydney’s “stimming” or “stims.” “Stimming” is short for self-stimulatory behavior(s) and are almost always present in a child with autism. It is also called stereotypic behavior.  It might be finger wiggling, hand flapping, rocking, spinning something, or any other repetitive movements. It could also be a vocal thing, like repeating words or squealing. People with autism might stim when they are bored, excited, anxious, or uncomfortable. These behaviors are not exclusive to people with autism. Do you tap your pencil, bounce your leg, bite your nails or twirl your hair? Those are also stims. A stim is not always a terrible thing that needs to be extinguished. An infant who sucks his thumb may need the stimulation while he is small. When he gets older, the thumb sucking will get in the way of activities, possibly spread germs, and look odd to his peers, so his mom will work on replacing the thumb sucking with something more appropriate. A child with autism gets caught up in a stim and uses it to shut out everything else. The stim takes away from learning opportunities and social interactions. Most of the stims Tate has had over the years have been things that needed to be minimized or eliminated.

Tate’s stimming began when he was around two years old when he lost his language and regressed. It is a result of autism, while Sydney’s stims are probably a result of neglect and an anxiety disorder.

To learn more about stimming see my post called Echoes from April 19, 2012.

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