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.