Who's on First?

Tate's not sure if he likes
Snoopy or not.

Tate is very interested in Santa this year. He is insisting we all write letters to the man in red. He has asked his teachers to write letters, as well. They are so cooperative and have been playing right along. Tate can be VERY persuasive. I keep reminding Tate that Santa is just pretend and Tate doesn’t argue but I am not sure he “gets it.” So, this evening I had a long talk with Tate and Sydney about things that are real and things that are pretend. I had written a Bible lesson a couple of years ago called “God is Real” and tonight we went over the lesson together. First we talked about people we know. They are real. Then we talked, at length, about the real people of the Bible who did incredible things. We mentioned David and the giant Goliath, Noah and his huge boat, and Jonah in the belly of the whale. I made sure Tate and Sydney understood the Bible stories are true. Then we talked about some fictional characters like the three little pigs and the big bad wolf. We talked about dragons and unicorns and other pretend beings. I had created an activity so the kids could circle the “real” things and cross off the things that were not. Tate circled the word “God” and the image representing Jesus, as well as Noah and the ark. He crossed off the unicorn and the dragon but hesitated when he came to a fairy. He said “I’ve seen fairies on TV so they are real.” I said, “No, they are pretend just like other cartoon characters.”  Tate agreed. There was a picture of a super hero on the page and Tate looked up at me and asked “Are super heroes real?” I explained they were just pretend. (See my recent post called “Seeing Ghosts” where I explain how Tate became convinced the Green Lantern lives in our town.) The last picture was a genie on a flying carpet. Tate circled it. I said, “Tate, genies are just pretend.” He said, “Mom, you know Egypt is in the desert.” I agreed, wondering what that had to do with anything. He went on, “Genies live in Egypt.” I said, “Genies are just pretend.” He said, “Egypt is real and the desert is real and genies live there. They are real.” I can almost see the logic there. I said, "Tate. Cross off the genie" and he did comply but I don’t think he changed his belief. Haha When Tate is convinced he “knows” something then he cannot usually be persuaded to reject that belief. THAT is one of the hardest things we deal with. I've had a doctor call it "rigidity of thinking."    

It is very hard to communicate with Tate for several reasons. He doesn’t process very fast so he gets “lost” in all the language if you talk fast or long. He doesn’t understand figurative language so we have to be careful not to say anything he could misinterpret. If we really want to explain something we have to explain it slowly and systematically, using concrete thoughts. Also, he cannot be preoccupied or distracted by other things or other thoughts. He often goes around in circles and it gets comical to me. It sometimes reminds me of the old comedy routine “Who’s on first.” The following is a conversation we had yesterday: 

Me to Tate: "Do you want some milk?" Tate: "I had water." Me: "Do you want some milk with your waffle?" Tate: "I'll put this cup by the sink." Me: "Do you want me to put some milk in it?" Tate: "I drank water in this cup." Me: "But Tate, the water is all gone so now you can have milk in that cup if you want." Tate: "I need a different cup. This one had water in it." I took the cup from him and poured milk in it.  He surprised me and drank it without an argument.

Inserted below is part of a blog post from March. I believe it is from my very first post. I had documented a conversation that day and want to share it again here. If you’ve been reading my blog long, you might remember it. You can see the similarities in the two conversations and understand how hard it is to get Tate to focus on what you want him to when trying to explain something. It can be quite frustrating.

…this week, we began an organized effort to teach some figurative language. Example…Tate noticed a moth in the house and was obsessing about it. Shawn (Dad) got him a flyswatter and said “Here keep this handy.” Me: “Tate, do you know what it means to keep something handy?” Tate: “Kill that moth.” Me: “To keep something handy means to keep it close by so you can grab it. What if I said that I need to blow my nose and the Kleenex were handy?” Tate: “You can’t kill a moth with a Kleenex.” Me: “Tate, don’t think about the moth. We’re talking about the word HANDY. It means to keep something close by so you can use it.” (I inserted two more examples of ‘handy’ in a sentence.) Tate: “Will you kill that moth?”

Back to the present (2012):

This morning Tate was stuck on the subject of our trip to Tennessee next week to watch his oldest sister graduate from college. There is no changing the subject or trying to get his input on any other topic when he is stuck. Unless, of course, it would be a subject he would find even more appealing. He is often dwelling on his favorite shows or his favorite characters from his favorite shows and he cannot seem to think "around" those images in his mind. Because of this Tate learns very slowly. Can you imagine trying to learn something you were not interested in from someone you could barely hear if there was a loud video of your favorite movie playing on a headset that you had strapped to your head? I think that would be similar to what Tate deals with. How can he listen to a lecture on rocks in science class when he is replaying the "Toy Story" movie in his head and he cannot shut it off?    

I have a very dear friend who parents a child with severe autism. She inspires me to be a better parent and she is truly a hero in my book. Once she told me how brave she considered her son to be. She described HIM as a hero, dealing with things that are incredibly hard to make very small gains. I think of that often and I am so glad she gave me her perspective. It makes me think twice when I get a little frustrated that Tate will not (or cannot) focus and attend to what I would like him to. It makes me think twice when I get a little discouraged that Tate cannot remember which drawers to put his laundry away without supervision. (Yes, there ARE visual labels on his drawers.) Tate works harder to learn a little, than most of us would work to learn very complicated things. So, doing third grade math in the fifth grade is not something to be dissatisfied with, but something to celebrate. I hear often that we should not mourn the things our special kids cannot do, but take joy in the things they CAN do. Those words are truly words of wisdom. 

Find this blog and more on Facebook at Quirks and Chaos. Or, if you want to become a follower of the blog, just 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! 

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.