Where We're At.

Before I go any further I want to make it clear that I don’t feel like my son has a disease. I would be hard pressed to say that he even has a disorder or a disability. I would tell you Normy is quirky. I would tell you he struggles with some things most kids don’t. I can’t deny that he has delays both verbal and cognitive… but a disease? Not a chance. I never feel like life with him is so hard, or that parenting him is is burdensome. In fact, he is a truly enjoyable person to be around. As far as autistic symptoms go, his are fairly minor. 

Here’s an idea of where he is developmentally: At six years old, Normy can’t tell you a story. Over the last few months we are finally starting to see the glimmers of some sequencing, but not enough that he could relay to you that first we met his friend at the park; then they played with the sand toys; then they rode their bikes; then we went home and had popsicles.  If on the day described above you asked him what his favorite thing about the day was he would be as likely to tell you about the dinosaur museum we visited six months ago as he would be to mention the sand toys or the popsicle.

Normy doesn’t understand the concept of time.  The idea of yesterday, today, and tomorrow is a complete blur for him. If I tell him we are going to Grandma’s house tomorrow he will be in a tizzy for the 24 hours until we leave for the trip, expecting to hop in the car at any second. When I continue packing and try to explain again that “No, we are going tomorrow… let’s look at the calendar.” he starts to get frustrated and begins demanding to go to Grandma’s NOW!” And he won’t just demand it once.

Normy get’s stuck in obsessive loops. If he wants to go someplace or do something he becomes single-mindedly fixated on it. For days on end he has been known to repeat things like: “Go to best friend’s house NOW!” or “I want to go ride Funny-Rides!” Nothing can break him out of the loop and over and over he’ll demand to go regardless of whatever reason or distraction is offered. Inevitably he dissolves in to tears and frustrated door slamming because tomorrow isn’t happening instantly. 

He does walk on his tiptoes and has trouble making eye contact with people, but other than that he doesn’t have any ticks or hand flapping. Most people would never guess that he is on the spectrum. Until you start asking him questions. If someone were to ask him, “Normy, how old are you?” He would most likely answer, “Six.” But, if you pressed on and asked “When is your birthday?” He might answer something like, “Three candles on my cake!” He is also very literal. If you tell him, “Boy, you are a sweet heart!” He’ll quickly correct you, “I’m not a sweet heart! I’m Normy Lastname!”

Until VERY recently Normy has had great difficulty dressing himself. It’s not that he can’t, it’s just awkward for him, and he doesn’t like to do it. On mornings when we have to be someplace I will bring him to his bedroom a half hour before we have to leave and lay-out his underwear, shorts, and shirt.  If left alone until time to leave I would likely return to find him still sitting on the edge of his bed staring out the window or playing with a truck with only his underwear on… backwards. He won’t brush his teeth. Mostly he just chews the brush. However, after YEARS of helping wash his hands I can finally trust him to go up to the bathroom and get them wet in the sink, even if soap is actually never applied. But, neurotypical six year old boys do that too, right! 

Other things seem to come to him naturally. He can do just about any jigsaw puzzle you throw at him, he plays video games about as well as my husband, and he rides his glider bike like it is an appendage.  He is awkward playing soccer and tee-ball but not much different than the other kids on his team. Of course he is as likely to kick the ball towards his opponents’ goal as his own…  

Actually, for YEARS now I would have told you Normy is my easy child. He is easy-going and listens and follows directions. He is eager to please, and likes to help. He plays beautifully by himself building train tracks and driving his trains around with a great deal of sound effects. He has always had wonderful concentration when something interests him. I found it so strange that his preschool teachers would claim that they could never get him to focus, when the kid I knew would gladly spend HOURS rolling out play-dough and lining up an army of trees or stars or whatever with a cookie cutter. If he were accidentally locked in his room with a marble run he wouldn’t realize he was stuck until he had to go to the bathroom or it was tome to eat! 

This spectrum business is really interesting. There are all of these kids (and adults) with differing variations of a “constellation of symptoms.” There is something I’ve heard repeated, “If you know one person with Autism, you know one person with Autism. My child is social and smiley, engaged in our family, and plays great with his sisters.  Of course, I have challenges dealing with him on the day-to-day. But, CERTAINLY no more than his four year old sister who is all sass and defiance, or my two-year old who wants to nurse as frequently as an infant and SCREAMS at me in the middle of the night when I tell her “bee-ilks” are only served between the hours of 6 AM and 8 PM (weaning failed, for those in the know). I never feel like, Normy is has a tragic condition or we’re lost in a mire with no path out.

I always imagined to have a disabled child or to get a diagnosis (any diagnosis) would feel like some crushing blow. Being told that Normy is on the spectrum never felt like that. Parents hold their new born babies and imagine the songs they will dance with them at their wedding; and imagine what it will be like to take pictures before they go to prom; and hope for grandchildren. Being told Normy has PDD-NOS didn’t sweep any of that away. But, what has been hard is the realization that Normy’s trajectory is never going to be just like everyone else’s and it is my responsibility to figure out how to help him soar in whatever direction he wants to go. But, really what’s so great about the bell curve? So, I have to engage more. I can’t parent on autopilot. If there was ever a reason to plug-in and living IN THE MOMENT this is it.