I was hoping that I was finished with this.

Every parent approaches the first parent-teacher conference with some trepidation.  After all, it’s a new experience.  You’ve been dumping your child off at this place five days a week, and arriving dutifully a few hours later to pick him up. You’ve noticed some changes.  He talks about certain new people. He’s doing new songs, saying new things.  But you have no idea what that means with respect to all the other kids.  You have dreams of course.  Dreams that your child is a genius who is on his way to an Ivy League school.  Dreams that your child is a prodigy at something like music or math and that he will be on his way to a lifetime of achievement. 

Me, I was not having dreams.  I would settle for putting the nightmares to rest.

My husband has another son, by his first wife.  This child (actually now a man, he is 22 years old) is severely autistic.  The kind of autistic that we used to think of when we thought of autism before we learned about autism being a “spectrum disorder” and you had celebrities like Jenny McCarthy (don’t get me started on her) out there telling you that autism could be “cured.”  The kind of autistic that means that he will never be out of diapers, never be able to dress and feed himself completely, never be able to live without the constant care and attention of someone else.  I respect my husband’s first wife tremendously for the things she has done to care for her son.  I know there’s supposed to be lingering resentments and fears and such surrounding such relationships between two women who have been married to the same man.  But truly, I begrudge her nothing, respect her utterly, and wish her nothing but love and good things, though I am not at all certain she feels any such fine feelings for me.

From the time that our son was in utero, the spectre of “the spectrum” has hung over my son. Although there are no certainties as to what causes autism, we do know one thing about it – there is a genetic component.  My son, having a half-brother who is autistic, had an 8 percent chance of having autism as well.  To give you some idea of where this stands in relationship to normal, most normal couples have a less than one percent chance of having a child with autism. 

To say that I have been watching my son carefully for markers of the disorder is analogous to saying that people with leprosy occasionally take a gander at their extremities to make sure they are still in one piece.  I knew that my son was shy, a little less social than his peers, less comfortable with verbal expression.  I was hoping it was just the function of a “slow to warm” temperment, something we had become familiar with during the past two years of therapy for his feeding disorder.  I prayed like hell it wasn’t something more.

On Friday, his teacher politely and gingerly informed us that while my son was making some progress in his skills, and was obviously very bright, particularly with respect to higher order things, she felt the need to bring in an “educational specialist” to evaluate John to see what could be done about the social and cognitive delays that kept him somewhat behind his peers. 

The word Asperger’s was mentioned.  Asperger’s is a mild form of autism, one that is more centered on social skill deficiencies and certain cognitive gaps as opposed to some of the more traditional forms of autism.  But it is autism nonetheless.  To be sure, we don’t have that diagnosis yet.  A diagnosis like that takes evaluation from trained specialists.  But what it is doesn’t really matter.  The fact is, there is something.  And we will have to invest the significant time and energy it takes to handle it.  And whatever name it chooses to go by is irrelevant.  Once again, I am facing down a developmental deficiency on behalf of my child.

Since then, I’ve felt a little like I’ve been punched in the gut.

To some extent, none of this is a surprise.  It is nothing more than what I had already feared.  To some extent, none of this is anything I haven’t dealt with before.  When we first figured out something was horribly wrong with John’s eating habits, I went through the incredibly rough emotional process of giving up on the notion that I would have a “normal” child.

Believe me, that one wasn’t easy.  Having been raised by overachieving parents who wanted an overachieving daughter (and by and large got one), I’ve got significant hard-wiring in place that wants to see my child do incredible things.  To some extent, every parent must surrender the notion that theirs is a perfect child.  But parents of kids with developmental issues have to do so to a whole other order of magnitude.  It’s not just a good idea – it’s a mental health imperative. Because the fact of the matter is that your universe of “normal” just got shattered.  And ain’t nuthin’ puttin’ those pieces back together the same way.  You either learn to live with it or walk around with a 20 ton millstone around your neck for the rest of your life, mourning the child that you never had, instead of loving the one that you do.

Over the past two years, my son has made some tremendous strides with his eating.  We’d actually gotten to the place where he wasn’t in therapy, where his nutritional needs were being met consistently, and he was on a routine that we all were able to live with, at least as it pertained to food.  He had by no means become “normal,” but our lives reached a reasonable facsimile to it.  School had even appeared to be helping.  The morning snacktime at school had given him significant exposure to how normal kids looked at food, and the modeling of his peers had expanded his food repertoire in a way no other therapy had been able to.  I was starting to get comfortable with the idea that maybe, just maybe, we were getting out of the woods with my son.  I had made the mistake of breathing  a sigh of relief.

I tried not to cry in the meeting.  I could feel tears loading up.  I knew I was having trouble looking his teacher in the eye.  I was blinking too much.  I knew what she was thinking, or at least I thought I did.  She thought I was one of those parents who never realized what was going on, the blind ones who wait until two or three people mention that there seems to be something wrong before finally acknowledging it.  It happens a lot more than you think, even in the age of helicopter parenting.  I tried to tell her that we’d had our suspicions, that I was no stranger to parenting a developmentally challenged child, and that I was fully prepared to do whatever it took to deal with whatever we find out.  The teacher tried to stay positive, and focus on all the progress my son had made.  I am not sure if what I was seeing was sympathy or pity.

I will have to be a lot more careful about sharing this information with the parents of my son’s peers. Despite all the education out there about developmental disorders, the fact still remains that when you admit your child has one, it’s tantamount to admitting he has some communicable disease.  The offers of playdates evaporate.  Suddenly you are “that poor woman” with the son who has “a problem.”  No one knows what to do with you so they stay away.  They don’t mean to be insensitive.  They just don’t know what else to do.  I think my son’s issues are minor, thank god.  I personally believe that a couple years of therapy and he should be relatively consistent with his peers again.  I don’t want to saddle him with a label that he doesn’t need to bear his entire life.

I thought I was finished.  I thought we had had our challenge, that we’d risen to meet it and had the end of the tunnel in sight.  No one told me that light was the headlamp of an oncoming train.

I am grateful for the small things – most folks with mild Asperger’s go on to lead relatively normal lives.  Many even end up being the kind of high-achieving individuals that my parents trained me to expect of myself and my kids.  And whatever it is my son has, it is not so great that it can’t be overcome, at least it doesn’t appear to be.  My suspicion is that like the feeding disorder, if we keep after it and apply the right therapy, we might get back to feeling “out of the woods” again.

But I can’t help but feel discouraged, maybe a little cheated.  The Sisyphean task of again pushing that boulder that is developmental therapy back up the hill I thought I had already climbed is every bit the kind of hell that was imagined for the son of King Aeolus.  I have to once again reach into the depths of myself and find the courage to continue, the strength to withstand and forbear, the will to not just curl up in a ball and cry.  Unlike Sisyphus, however, I love my boulder.  He is my son.  I would carry him to hell and back, because I am his mother and there is no beast in this world or any other that could stop me if what I do is for love of him. 

I thought it was over, is all.  I thought I could rest.  The gods, apparently, had other plans.