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."  

Open Road But A Closed Mind

This is an update on a post from April so I reposted that blog entry below, as well.

That road that was closed six months ago?  You know, the detour into town that left Tate unable to breathe normally?  Well, the road is open and has been for almost two weeks.  Am I allowed to drive on it?  Absolutely not without much protest from Tate!  His routine of the past six months is now the new set-in-stone routine. The old route into town, although paved and widened, is now causing him great distress if we use it.  If it’s not one thing it’s another.  I’ve said it before and I’ll say it again:  Routine is everything to a kid with autism. 

Yesterday, Tate left his i-pad at school.  He went into panic mode when we arrived home.  I suggested he use his dad’s i-pad and get his in the morning when he returned to school.  He was beside himself until we got into the car and headed back down to school.  Why?  Because his i-pad belongs by his bed, plugged in to recharge every night when he goes to bed.  Changing the routine would make Tate miserable in a way that most people without autism could not even begin to understand.

Sometimes, we have no idea we are setting a precedent until one has already been set in his mind.  For years we have used an artificial Xmas tree that is stored in the attic.  About four years ago Shawn decided he wanted the kids to have the experience of cutting down a tree so we went to a tree farm.  I can’t remember if Tate protested or not.  Sometimes he looks at a new experience as an adventure and he gets excited.  Sometimes.  But not usually.  Tate has been telling us all week that he wants to put up our tree on Saturday.  Shawn and I are fine with putting up the tree this Saturday but, in the effort to save some money, we told Tate that we would be putting up the artificial tree from the attic.  We were not thinking about how he would take the news and it went badly.  I don’t think he got much sleep last night.  He went to sleep protesting about using the fake tree and he woke up protesting about the fake tree.  He doesn’t have anything against artificial Xmas trees.  He just doesn’t want to alter the routine we have set for getting the Xmas tree.  Sometimes, the drama and pain caused by change are too much for me to watch Tate go through and sometimes I am able to deal with it with less difficulty.  I am often able to think of the routine changes as good therapy for a boy who needs to learn to become more flexible.   

Under Construction  (Repost of entry from April, 2012)

The main road between us and our small town is undergoing some major renovations.  The power company and other utilities have been digging and moving things for months.  We’ve watched the backhoes and other machinery come and go and I have commented to the kids several times about the road into town being widened.  This morning there was a sign up that said “Road closed beginning April 24.”  Tate snapped to attention when he saw that sign and began protesting and asking questions.  You would have thought he was one of the business owners on the strip that have been complaining loudly about losing income while the road is widened. 

I have been dreading the day the road will close because it has the potential to make our daily trek into school stressful for Tate; and, when Tate is stressed, everybody is stressed.  Starting his morning out with a detour will not be easy.

When Tate was really young and we had to take an alternate route to a familiar place he would become anxious and cry sometimes.  He could read at a young age and recognize road signs and he became upset when he saw a detour sign, even on an unfamiliar road.  At first I thought he was bothered by the bright orange color of the detour signs.  He could not verbalize his thoughts or fears to me.  I understand now that many people with autism like to do the same thing, the same way every time.  He associated the word “detour” with “change” or “different” and these things are scary.

Two or three years ago, one of the major roads going the other direction was closed for a couple of months while a new overpass was being built.  We had to use a temporary detour road that was new and built to accommodate traffic through that area.  Tate had a major problem with going on “the new road.”  He would protest and tell me we were going the wrong way.  I explained over and over why we were using the different road for a short time.  We weren’t so dependent on that route so I was able to avoid it most of the time.  After we had used the temporary road for a couple of months he stopped protesting quite so loudly but always commented on it.  I think the new route in to school will be accepted after a couple of weeks because Tate is maturing and learning to be more flexible all the time.  I just wish he didn’t have to deal with the anxiety initially.  I suppose it will get easier all the time.  Tate is also “under construction” just like the road. 

Look What I Can Do!

“Watch me!  Look what I can do!”  How many times have you heard it from a preschooler as they build a block tower or crash their cars together?  It is something I had heard a thousand times from my other children but never from Tate.  Why? 

As soon as I got the tentative diagnosis of autism from Tate’s pediatrician I was reading books that told me “early intervention is the key.”  I jumped on the phone trying to find help for Tate.  It seemed the developmental pediatricians, all qualified to give the final and necessary diagnosis and recommended treatments, had waiting lists of six months or more.  How can a parent wait six months when all the books say “move quickly” and I knew time was wasting?  There was one developmental pediatrician in my area I found who had a waiting list of ONLY three months.  I made an appointment but I also insisted I must talk to his nurse immediately.  I would not take “no” for an answer from the receptionist.  The nurse had mercy on me and called me back.  I had lists of questions written down to ask, and as the nurse and I talked, I began to sob.  The compassionate nurse told me she would have the busy doctor call me and I specifically remember her telling me not to waste my precious phone call with him crying.  I would have a very few minutes of his time to ask for his advice and then I would have to wait three months for our appointment.  He called me between his appointments that same day.  He was in his car on his cell phone and he told me he was very pressed for time.  I will never forget that call.  He was kind but he did not candy-coat anything.  He asked me some really hard questions.  He asked me if Tate had ever pointed out an airplane in the sky to me.  I had to think for a few seconds and answer “no” but was immediately horrified that I had never noticed this on my own. He asked if Tate had ever pretended to talk on a phone. He asked me if Tate had any relatives (especially older brothers or cousins) without empathy for others.  He asked me if Tate’s siblings or cousins ever got caught up in repetitive behaviors or had poor social skills, anxieties or odd habits.  He asked me if Tate could follow my point; meaning: could his eyes follow my finger to see what I was pointing at?  I was not sure.  I remember thinking: “How could I not know?  What kind of mother was I?”  He asked me if Tate had ever said “watch me” or “look what I can do” and I had to say that he had not.  It was one of my first lessons in joint attention and what that means.  Tate had no joint attention.  Joint attention is “the shared focus of two or more individuals on an object.”  People draw attention to things through eye gaze, pointing, or commenting.  Joint attention is essential for the development of communication.  Joint attention is one of the earliest noticeable differences in the typically developing child and the child with autism.  If I had known these things, perhaps I could have helped Tate much sooner.  Know an infant?  Watch for the developing joint attention.  Early intervention is the key.

That phone call from that doctor opened my eyes to so many things. He had asked me if Tate had relatives with characteristics similar to his.  I had said that he did not but later that evening, when talking with my husband, I realized I had answered some questions incorrectly.  After giving it all more thought I remembered a lot of things that had not occurred to me while visiting with that doctor.  There was a little boy in my family who had entertained himself with repetitive behaviors for long periods of time, although he had outgrown it.  Tate did and does have relatives who suffer from anxieties.  There were little boys in my family who had not developed empathy skills appropriate for their age and there were little boys in my family who had very poor social skills.  Many of those things have been overcome with age, teaching and maturity.  I, myself, had been a very anxious child, shy to an extreme, with some of the characteristics of autism. The difference between Tate and those with a few quirks is joint attention.  None of us could ever be diagnosed with autism.  We had “enough” joint attention.  We have “enough” theory of mind.  Have an infant?  Watch for the development of joint attention.  Early intervention is the key.   No one can say it often enough or loud enough.  Early intervention is the key.

looking for Big Foot

In my last post I told you about the time Tate saw a ghost and had no trouble accepting the “fact” that ghosts roam freely in our world.  If he sees it, then it exists.  End of story.  Not being able to separate fantasy from reality, or understanding the motives of others and why they would pretend, has him believing in many costumed characters.  Tate doesn’t have any trouble believing Santa is real and his reindeer fly or that muppets are alive and well.  I have to explain to him what is real and what we are just pretending about “for fun.”  Sometimes I get through to him and sometimes I think it goes in one ear and right out the other. 

 

One of Tate’s favorite shows is iCarly.  He watches the reruns over and over.  In one episode, the iCarly show tries to find Big Foot.  At the end of the episode, Big Foot drives off with the RV.  Tate loves that part.  We have also seen Big Foot star in a few commercials for beef jerky.  Tate is convinced that Big Foot is alive and well and probably living in the trees around our house.  He isn’t frightened in any way.  He wants to catch sight of him.  Several times Tate has told me that we are going to go into the woods after dark and find Big Foot.  When Tate decides something is going to happen it is very hard to alter his plans.  It is not like redirecting a small child and distracting them with another activity.  He obsesses about the thing he wants to do and tries everything he can think of to make it happen.  His announcement usually begins “Hey Mom, on Friday night, we will go find Big Foot.”  I never know quite how to respond.  “No, we will not” won’t get me anywhere with Tate, and “Big Foot is not real” will not even be heard.  So, I usually just take advantage of the fact that he wants to converse with me.  Since conversation skills are few and the motivation to converse is rare, I go with the flow.  I might ask, “Where will we look?”  Tate will explain to me that Big Foot lives in the woods and we can look in the woods around our house or we could drive to some other wooded area if I like.  Then he will probably caution me that we will need to be careful if we drive anywhere because Big Foot has been known to steal people’s cars (the iCarly episode has taught him this).  I ask him what we will need to bring and he will tell me that we only need a flash light and some biscuits.  This summer, one of his siblings convinced him we would probably need some bait and Tate believes Big Foot would like biscuits.

 

I do a lot of things for Tate, but I am not about to go traipsing around in the woods at night looking for Big Foot.  I have tried several methods of convincing Tate that looking for Big Foot would not be a good idea.  Once I told Tate I wouldn’t be able to help him hunt for Big Foot because I’d be too afraid.  I asked “What would we do if we found him?”  Tate’s response?  “Shoot him.”  Yikes.  I guess we add a GUN to the list of things to bring now.  HELP!         

seeing ghosts

Tate, age 3 ½ 

Tate thinks very literally and this often causes him to misunderstand the world around him. People with autism also struggle with separating reality from fantasy. One of the first times I realized how handicapped this made Tate was when he was around three or four years old. Tate and I were walking in a building on Kansas University’s campus and we came face-to-face with a woman wearing a hijab with a veil covering everything except her eyes. As we walked by her, Tate nonchalantly said “oh, a ghost.” He didn’t ask any questions. There was no alarm in his voice, no double-take, or any kind of disbelief at all. He called it like he saw it. He saw a ghost walking down a hall. End of story. 

A few days ago, we were driving through our small town and Tate saw a black sports car trimmed in lime green parked in a drive way. Tate said, matter-of-factly, “The Green Lantern lives there.” No big deal. A super hero lives in our town. One plus one equals two, after all. Like that “ghost” and the Green Lantern, many other costumed characters have been accepted by Tate as true to life personalities. I think this, and a lot of the other difficulties Tate has interpreting his world, can be traced back to the theory of mind issue. Theory of mind is the ability to understand that other people have thoughts and feelings too and people are not always thinking and feeling the same way you are. It takes theory of mind to be able to empathize with others, read body language, pretend, and understand a lot of humor. Tate cannot see why anyone would have a motive to pretend to be anything they are not. This is the part that can get a person with autism in a lot of trouble when mom is not there to watch out for them anymore. Typically developing children gain some street smarts at a fairly young age. They learn to “read between the lines.” They learn that sometimes people tell lies, pretend to be things they are not, and manipulate others so they can get what they want. Typically developing kids also learn to see some gray between all the black and white rules we live by.  Kids with autism don’t often learn all the exceptions to rules and gain the street smarts. People with autism can be taken advantage of very easily. 

Seeing a ghost and believing a car in town belongs to a super hero are things I can chuckle about but it makes me wonder how far it could go. We see wildlife in the yard quite often. A whole flock of turkeys walked across our yard today.  If a tiger sauntered across the yard while Tate was outside swinging I wonder if he would come inside to tell me or just casually say “hmmm, a tiger” and keep on swinging.

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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.

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