How many signs do you need?

So far, I have filled most of the space in this blog talking about SB.  His place on the spectrum is more severe than his younger brother, and he has needed more intense intervention.  Also, we have had more years to deal with his diagnosis, which came in 2006.  AB was diagnosed just 4 months ago, in November of 2011.  Today I am going to talk about my little guy, AB.

I was pregnant with AB when SB was diagnosed.  So of course, I started worrying about whether or not he would have autism before he was even born.  I remember holding my newborn in my arms, trying to figure out if he was looking me in the eye.  My husband and other family and friends dismissed my worries and told me I was being paranoid.  (I was.)  A newborn is not developmentally capable of making consistent eye contact.  I knew this, but it didn’t stop me from worrying.  I worried and worried and worried throughout his toddler years.  It’s what Mommies do best.

We watched AB’s development very closely, and he seemed to be hitting all the milestones within a very normal range.  Most importantly, he started to talk BEFORE his first birthday.  Words!!!!  We were so incredibly excited to be hearing words!  SB didn’t speak at all until he was almost 2, and only after he had started working with a therapist, so we were extremely thrilled and relieved when AB began to talk on his own so early.  AB started to put words together a few months later, also within a very normal range.  Later, around the time of AB’s second birthday, we were working with SB on a morning greeting.  One of us would say, “Did you have a good night?” and SB was supposed to respond, “Yes.  Did you have a good night?”  We had not worked on this greeting with AB at all, but when I asked him one morning if he had had a good night, he replied, “Yes, Mommy.  I did have a good night.  Thank you for asking.  Did YOU have a good night?”  I gasped.  He was just 2, and he was speaking to me in SENTENCES.  Several complete sentences!  That was the moment that I took in a big breath, and exhaled with a huge feeling of relief.  Certainly my baby did not have autism with language this good at age 2.

I also remember watching AB play with toys as a toddler, and he seemed to naturally figure out what he was supposed to do with each toy without being shown.  “Yay!” I thought.  “This is how it’s supposed to be!”  I smiled as I watched him figure out the shape sorter all by himself at around 18-20 months.  This was the same shape sorter that I described in my last post that I had to teach SB how to use step by painful step at age 3 ½.  Surely my little guy did not have autism when he played with toys so naturally and appropriately.

From age 2 to age 4, I actually completely stopped worrying about AB and autism.  He learned everything faster than his brother had.  In a few areas, he actually passed his older brother.  He mastered the spoon and fork before his brother did.  And neither of them was easy to toilet train, but once AB finally got it, he got it.  (SB, on the other hand, is still having some issues even now at age 7.  Maybe I’ll write a post someday about toilet training issues, but not until I have some useful advice to pass on.  Right now my only advice is to try not to swear or hurt your children when you are so frustrated with them that you can’t see straight, and then drink a lot of wine after they go to sleep to try to forget how frustrated you are.) 

My husband is a teacher, and has the luxury of being a stay-at-home Daddy during the summer.  This means that both boys get a lot of quality time with Daddy for a few months, which is really great.  It also means that the boys get a lot of quality time with each other.  During the summer of 2011, SB was 6 and AB had just turned 4.  They played together fairly well, mostly playing the repetitive and weird games that SB would invent.  AB seemed to go along with whatever his older brother wanted to do.  I told myself that this was normal.  All younger siblings want to be just like their older siblings, right?

I could list dozens of examples of these repetitive and weird games and behaviors that we noticed that summer, but I’ll try to limit myself to just a few.  One example is hand flapping, which is a very common, stereotypical autism behavior.  SB has always done this when he’s happy or excited, and it’s usually accompanied by jumping up and down.  He’s a jolly, energetic guy, and gets excited very easily.  We started to notice AB flapping and jumping as well.  Was he just copying his big brother?

Another thing that SB has done for years is to lie on the floor on his side and push a car, truck, or other toy vehicle back and forth past his face.  I think he enjoys watching it go by his eyes.  At a glance to a casual observer, it doesn’t look all that strange.  It just looks like he’s on the floor and playing with a truck.  But if you keep watching, you will see that the game never changes, and the normal things boys do with cars are absent, such as making sound effects, pretending to go to a specific place, and, well, getting up off the floor.  I noticed AB doing this same game more and more during the summer of 2011.  Did he learn this from his brother?  Was he doing it because his older brother does? 

That summer, the car and truck game sometimes morphed into the Dead End game, which is still a favorite game even today.  SB became obsessed with road signs, specifically Dead End, No Outlet, and Do Not Enter.  It became important and hilarious to him to constantly talk about where his cars were NOT supposed to go.  He loved to draw pictures of roads that ended, draw a Dead End sign at the end, and then talk to me (or anyone else who would listen) about how the road had ended.  Although it was SB who created these activities, AB loved playing, too.  He also began to talk about Dead Ends a lot, and liked to push his vehicles alongside his big brother, pretending over and over that they were hitting a Dead End.  I knew it was a weird activity, but surely AB only enjoyed it because he was copying SB, right?

Another toy we have that can get extremely repetitive is a set of plastic gears that stick to the fridge, or any other metal object, with magnets.  You are supposed to put the gears together in different configurations and learn about the mechanics of gears, I guess.  But SB doesn’t really use this toy the way it is intended to be used.  He just sticks several gears on the fridge, not touching each other, and then spins them as fast as he can.  He watches them until they stop, and then spins them again and again and again.  It’s one of the (many) activities where I usually have to intervene at some point and make him play with something else, just because the repetitive nature of his behavior is driving me nuts.  And during the summer of 2011, we started to notice AB doing this with the gears as well.  Did AB really enjoy this activity, or was he doing it just because he has watched his brother enjoy it?

One of SB’s many obsessions is elevators.  We can’t get out of a shopping mall, parking garage, or medical building without riding the elevator at least once, even if we are already on the floor that we need.   SB loves to ride elevators, talk about elevators, pretend that his closets are elevators, pretend that two Lego blocks are elevator doors opening and closing, etc.  During the summer of 2011, we noticed that every time we went to the mall, AB seemed just as excited about elevators as his brother was.  They were both talking about elevators with the same level of enthusiasm, and I started to wonder if that was unusual.  Why does AB love elevators so much?  Surely, it must be because it’s a topic that’s important to his older brother.  Yes, that made sense.  If my big brother thinks this is important, than it must be important. 

During the 2010-2011 school year, SB was in kindergarten and AB attended preschool at a local Minnieland.  AB received a progress report in November of 2010, and the teacher wrote, “AB struggles to keep interest in a story, but even while not appearing to pay attention, he can later tell you what happened in the story.”  Both his teacher and I thought this was a bit odd, but nothing to be alarmed about.  Strangely, in the spring of that school year, SB’s kindergarten teacher reported to me a very similar phenomenon.  She said that SB was usually looking around the room, playing with his shoes, or doing some other distracting thing when a story was being read to the class, but that he could sometimes (but not always) talk about parts of the story later.  “What a coincidence!” I thought.  Surely these things weren’t related, were they?

On a Saturday evening that summer, after having a bath and putting on their pajamas, it was time for the boys to watch a movie.  The movie they chose was “Fantasia,” which they both loved and had seen many times before.  I left the room for a moment, and when I returned, SB was sitting on the couch, munching on his popcorn and enjoying the movie.  AB, however, had climbed down to the floor and was sitting with his nose only an inch away from the counter on the DVD player.  He was watching the digital counter and completely ignoring the movie.  I instantly got a weird flashback.  This is something I had seen SB do many times before.  About 2 years earlier, when SB was in preschool, his teacher told me that SB had become so focused on watching the counter on the CD player during circle time that he could not focus on the circle time activity.  She covered the counter with black tape, which seemed to solve the problem.  With an uncomfortable feeling in my gut, I told AB that he needed to return to the couch and watch the movie, not the numbers on the counter.  He refused to move.  So I grabbed the first toy that I saw and placed it in front of the counter, blocking his view.  He sighed and then returned to the couch.  Why did he want to watch the digital counter more than the movie?  It must be because he had learned from his older brother that watching numbers was cool.  Again, he was just trying to be like his brother, right?

All of these things were starting to make me feel uneasy, but I continued to tell myself that he was just copying his older brother, and that once school started and they weren’t spending all of their time together each day, AB would stop doing these things that were making me feel paranoid.  Then one day soon after school started, I needed to help SB with his homework, and my husband was not home.  As soon as we sat down at the dining room table to begin, AB decided that it was crucially important that I read him a Thomas the Train book at that very minute.   I told him that he needed to play by himself for 15 minutes while I helped his brother with homework, and then I would read him the story.  Disappointed, he wandered into the kitchen.  Earlier, I had put some chicken in the oven to cook for dinner and had set the digital timer on the oven.  AB began to watch the numbers count down on the timer.  “Hey, you should go play with your trains in the basement!” I suggested to him.  “No,” he replied.  “I just wanna watch this.”  I began to help SB with his homework, keeping one eye on AB in the kitchen.  He crossed his arms over the oven handle, rested his chin on his arms, and stared at the timer.  When the timer went off 10 minutes later, he turned around without saying a word, and left the kitchen.  I got up to turn off the now beeping timer.

As I stood in the kitchen, my hand still touching the timer after I had turned it off, I had one of those moments.  The kind where time seems to stand still and everything else in the world goes away.  Watching a timer count down for 10 whole minutes should not be interesting to a 4-year-old, and I knew it.  That should have been boring, not fascinating.  And he did it because it was interesting to HIM, not because his brother found it interesting.  What I had just witnessed was a strange, stimmy, and not typical thing.  It was an autism thing.  I decided right there that the first thing I was going to do the next morning was to call the Developmental Pediatrician.  I was still not convinced that AB was going to get a diagnosis of his own, but I knew that I was not going to be able to rest until he had seen an expert.

So a few weeks later, we took AB to see a Developmental Pediatrician.  I was still partly convinced that the doctor was going to tell us that everything was fine, that AB was right on track, and that we had nothing to worry about.  Because I am in the military, I don’t always get to choose which doctors that I see.   We had never met this doctor before, and that added to our nervousness.  We told the doctor all about our concerns, such as AB’s mostly solitary playing at daycare and his repetitive behaviors at home.  The doctor then spent a lot of time asking us questions about AB’s development.  When did he crawl?  When did he walk?  When did he say his first word?  When did he put words together?  I answered to the best of my memory.  Then he asked, “When did he start to tell you stories?”  My husband and I looked at each other, and then I asked with a lump in my throat, “Is he supposed to be telling us stories?”  Yes, the doctor admitted.  Then the doctor began to ask AB a lot of questions, which I was surprised to see were very hard for him.  “What runs?  What flies?  What swims?”  There were at least a dozen like this, and AB only answered a few.  The rest he ignored, but I knew that he had heard the questions.  His hearing is fine.  Then came even harder questions, such as, “What do you do when you are cold?” and “What is a book for?”  AB just looked at the doctor blankly with no answer.  Of course we read to our son.  Of course he knows what a book is.  But he didn’t understand how to answer the question when it was phrased that way.  Another surprising test was when the doctor put a toy chair in front of AB, and asked him to place a block in front of, behind, on top of, under, and beside the chair.  He only got one right.  How could I have missed that he didn’t know the difference between “behind” and “in front of?”  The doctor also did some other tests that involved building structures with blocks and drawing shapes with a crayon.   About 2 hours after we arrived, the doctor told us that he was most concerned about AB’s delay in language.

Language??!?  What?!?!?  But he talked so early!  And he spoke in sentences so young!  But the doctor told us that a typical 4-year-old should easily be able to answer questions like, “What is a book for?” and AB clearly did not have to language skills to do that.  The fact that he had so much trouble following directions about where to place the block in relation to the chair also showed a delay in receptive language.  And I had to admit to myself that recently I had noticed that AB’s conversation skills did seem less sophisticated than other 4-year-olds.  So to sum it all up, we had stereotypical, repetitive behaviors, a lack of normal social interaction, and now we also had a language delay.  I sadly realized that yes, indeed, this did smell an awful lot like autism.  None of his symptoms were on the same scale as SB’s symptoms, but they were there, and I couldn’t deny it any longer.

We walked out of the doctor’s office that day with our second autism diagnosis.  Unlike the day of SB’s diagnosis, neither of us cried.  We took AB to the Starbucks in the hospital and got ourselves a snack before we took him back to daycare, and then we both went back to work.  Although AB was on my mind throughout the rest of the day, I actually functioned pretty normally and even got some work done.  I realized that this seemed a little bit weird, since after SB’s diagnosis, I had trouble functioning for weeks.  No, it was more like months.  (That period is kind of fuzzy in my head now.)  Why was I handling this diagnosis so much better?  I think there are a lot of reasons.  For starters, AB’s place on the spectrum is milder, so he has fewer deficits and fewer issues that we need to tackle.  His prognosis is good, and his treatment seems less daunting.  Also, we have seen how much ABA therapy helps.  Five years ago, we didn’t have that kind of confidence that things would get any better.  And, we don’t have the fear of the unknown like we did then.  We know this road, because we’ve been on it before.  We know who to call and what to do.  Lastly, I was pregnant when SB was diagnosed.  I am certain that my raging hormones and extreme fatigue were not helping my mental well-being.  Thankfully, that was not an issue this time.

So now both of my children have an autism diagnosis.  And I’d like to try to help you, the reader, understand what my little family is like.  Imagine that all people with autism are on a scale from 1 to 100.  1 is a person with only the mildest of symptoms, and 100 is a non-verbal, severely cognitively impaired person.  I believe that SB is somewhere between 40-45, and AB is somewhere between 15-20.  I did not come up with these numbers by any scientific method or with any real data.  I am just guessing where I think my kids fit on the autism spectrum.  When I share with someone new that I have a child (or children) with autism, they often ask me, “Where on the spectrum are they?”  And the real answer is, “It doesn’t matter.”  Because once a child is diagnosed, the services that they receive are based on their particular needs.  A therapist is going to assess the child’s skills and deficits, and then create a tailor-made program for that child.  And then the child will make progress at their own rate, which is always behind the rate of their typical peers.  But slowly, progress does happen.  It really, really does.

One thought on “How many signs do you need?

  1. Mindy, thank you for this clear, detailed description of all that happened leading up to AB’s diagnosis. We were sure also in the beginning that he was not autistic but now see the things that you describe here. But mainly we see a darling, energetic, playful child whom we adore.

    Watson

Comments are closed.