On Monday, I met with Little Man’s new doctor.  Little Man loves Dr. Small because he talks to him and plays games with him and his office is on the fourth floor of a building that has an elevator.  Little Man loves elevators.  My guess is that when Little Man is a little older, he will learn everything he can about elevators, developing an encyclopedic knowledge of elevators that would do Elisha Otis* proud.

I guess this because it would be very typical of a child with Asperger’s Syndrome, the disorder that Dr. Small diagnosed Little Man with on Monday morning.

It wasn’t a big surprise to find this out. I had suspected this when his teacher first flagged his problems for us in our parent-teacher conference.  In many ways, a diagnosis can be a relief.  Finally, a name to things.  Finally, a rubric in which to come up with a course of action.  Finally, a group of people who have walked the path you are walking and can tell you what you don’t know yet.

In retrospect, however, it was probably not the best thing for me to spend the following day trapped in the house with Little Man home from school, our childcare having the day off, and both he and I sporting wicked colds that made going outside and enjoying the falling snow together impossible.  The claustrophobia of being trapped indoors with difficult thoughts produces a strange kind of emotional torpor. It slowly fogs your brain, making it impossible to see much beyond your worst fears -- the dark, horned demons that fly up into your face, beat their scaly wings at you, and breathe into you their fetid visions of the worst that can be.

I spent most of that day crying as I tried to care for my son.  It grew so bad I had to summon my husband home from work early.  I wasn’t able to hold it together.

I am still not sure yet exactly why I was crying. Because there were so many reasons.  I was crying because I knew now that my son possessed a condition that could not be “cured.”  (I don’t care what that irresponsible cow Jenny McCarthy says.) Asperger’s is a neurological condition that essentially means that my son will always need a lot more help to understand the world he lives in, because he simply doesn’t see it through the same lens the rest of us do. 

Unlike some learning disorders, like dyslexia, where you can apply a set of therapies and essentially retrain the neural pathways, Asperger’s is a continual challenge.  And the challenge changes as a child grows.  At Little Man’s stage, the challenges are with the building blocks of learning, things like the ability to focus and to process language.  As he grows older, the lack of social skills that attends most Asperger’s kids will become more important, as he tries to grapple with all the insecurities and desire to fit in that come with being a teen, while carrying the millstone of being unable to understand the social cues that others naturally comprehend. 

Parenting a kid with Asperger’s is a lifelong proposition.  I will have to continually strap on my armor, pick up my sword and fight the world so that this child will have a chance. Indeed, it has already started.  I will have to fight the schools to come up with the best educational opportunities for my son.  His current preschool teacher has indicated that it might not be possible for him to stay in the Monetssori classroom he is in.  If I take him out of that classroom, the alternatives become bleak – fighting the public school system through the IDEA –based programs in a weak economy where administrators will be trying to spread too few resources across too many kids, or relegating him to a special needs private school that may or may not be geared towards his reaching his full potential.  The trend for kids with mild developmental disorders is to “mainstream” them, to keep them with their peers if at all possible, but that concept means different things in different settings.  And it does not protect a child from the stigma of being “different.”

I now have a new job – Therapy Coordinator.  It’s a full-time position that involves locating appropriate therapists in the area to address various aspects of the disorder, scheduling them around his school and his playdates, and making sure he gets to each and every one regularly.  There are speech therapists, occupational therapists, social skills development classes, nutritionists.  And this is just the beginning.  Any other job I thought I was going to have must be laid by the wayside, at least for the time being. Oh, and by the way, I will not get paid.  And the therapies I am coordinating?  Most will not be covered by insurance.

A friend reminded me yesterday that Little Man is the same today as he was before the diagnosis.  And she’s right.  My son is not a different little boy than he was last week.  He is still the sweet, smart, gentle-spirited little boy who loves to play and sleeps with a menagerie of animals and likes to read the “Knuffle Bunny” books.  He still needs me to hug him and tickle him and smile and give him the love and affection that he needs from his mother.  He is so many beautiful, wonderful things and he deserves to have those things highlighted in his life.  He can’t just be the “therapy kid.”  Part of my struggle is to know how to incorporate the things we do to cope with his disorder into his life, my life, our lives, without having them take over.

And somewhere in the midst of all these new responsibilities, these choices that have been made for my son’s life, my life, our family’s life without our volition, we have to find joy.  Because if we can’t do that this thing will eat us all alive.  And that may be the toughest task of all.  Because while joy can arise in the midst of great pain and struggle, it requires choosing, an act of will that has to be mustered every day until it can come effortless and unbidden.

I am fortunate that I have a good friend who has walked this path before.  My friend Sue has an 8 year old with Asperger’s.  Moreover, she lives in my area, so she has experience with the different doctors and therapists and resources.  And she can assure me that it will be okay.  Indeed, I have watched her son as the therapies have taken hold and transformed him from an out-of-control boy who was very overwhelmed by his world, into a composed child who can handle it. I pray to be able to look back one day and see similarly extensive changes in my son.

For now, it is a day by day affair.  We are lining up therapists.  We are talking with his teachers.  We are telling our families.  We are in the process of reshaping our lives into something new.  What I learned in addressing John’s feeding disorder last year is that the point of therapy is most often not to “cure,” but to cope.  You don’t become “normal.” My son will never be “normal.”  Thankfully, I have never been one to fetishize the idea of normalcy.  At best what we will get to is an equilibrium, a place where the pattern of our lives is less chaotic, where Little Man is more adapted to his world, able to operate in it with less difficulty, even if it is not with ease.  I call this getting to the “new normal.”

Today is better than yesterday, which was better than Tuesday when I cried all day.  Tomorrow may be better still. Or it may be worse.  It will be up and down from here.  Getting to the “new normal” is not easy, nor fast, nor even a sure thing.  It is a kind of Brigadoon, a vale that will appear out of the mist when I least expect it, and will disappear forever if I lose faith in its existence. But when you love someone deeply, anything is possible.  Or at least, that’s what they say in Brigadoon.

* Elisha Otis invented the modern elevator in 1853.