A Giant Leap For Ben

Ben hugged a classmate today!  I picked him up from his daycare this afternoon, and he ran to me with hugs and kisses and then said, "I want to tell Kaden good-bye."  This in itself is huge, but I was confused.  He has a cousin named Kaden and used to have a school (PPCD) classmate named Kaden, but I was not aware of a daycare Kaden.  Sometimes he gets stuck on the names of people, like former classmates and teachers, so I asked him if Kaden was in the room.  He ran to a little boy and said "Bye bye Kaden!" and waved.  Kaden turned around, smiled great big at Ben, and said, "Bye bye Ben!  I need a hug!"

And I froze.  Hugs are different from bye-byes and he is wary of people he doesn't know well touching him, and is even sometimes wary of family members hugging him.  He began to back up to Kaden like he does to more familar people, sometimes: a backwards hug, where you hug him but he doesn't have to get too close.  The other boy looked confused, so I gently turned Ben around, and they hugged!  And he smiled at Kaden and told him good-bye again!  And then Miss Brittney said they played together today! 

OMG, imagine my excitement!  I wanted to jump up and cheer! 

Ben has struggled with other kids since he was about 18-months-old and for the longest time would not even play near the other kids at daycare.  We blamed it on shyness.  His 2nd birthday party was a nightmare because of the crowd, which I blamed on his not having had a nap, but the fits and isolation at family gatherings continued for about a year.  He began to parallel play at 3 and has gotten progressively better with big groups of family and in classrooms, but he still kind of does his own thing most of the time.

So this is huge.  I know it is not a big deal at all for most 4 & 1/2-year-olds, but it is HUGE for Ben.  It gives me hope.  I know his journey will be full of social challenges, but this is definitely a good sign and has made me almost inappropriately excited.  The little steps are enormous with kids like Ben.  Enormous.

Aspies

The first time I heard the term "Aspie", it was in a news clip where a mother affectionately referred to her son as an "Aspie".  That first time, I didn't think much of it.  My son hadn't been diagnosed yet, and I was too engrossed in my thoughts about how Ben might be on the spectrum but probably didn't have Asperger's because he had nothing in common with her child.  I was wrong, of course, since every child with it acts differently and has different quirks, and while the term was in my mind it didn't make much of an impression on me.

Now, however, it upsets me, possibly to an unreasonable degree.  I am sure every parent of a child with special needs has different thoughts or feelings about this topic, just as there are as many opinions about any aspect of parenting as there are parents, but I really dislike that label.  Maybe it isn't meant to be a label, but I feel like it is--like it limits the child's identity and potential, and I am very sensitive about that.  I am sure the parents and other people who refer to kids as Aspies aren't trying to label or limit them, and probably don't feel like the kids are going to feel labeled and limited, but a positive sense of identity is crucial to children and that is one of my main worries for Ben.

When I was in college studying to become an educator, My Children With Special Needs professor (whose name escapes me but whose face is crystal clear in my memory) stressed the importance of saying that a child had a learning disability, rather than saying that the child was learning disabled.  It's the same thing really.  My son has Asperger's, but he is certainly not Asperger's.  And while it may create challenges and cause his quirks, I do truly believe he has as much potential as any other child.  And just like any other child, he deserves to be nurtured and supported, not limited and labeled.

And his identity should be true to who he really is: a sweet, mischievous, loving little boy who loves Curious George, Handy Manny, animals, books, music, musical instruments, and playing a toy bassoon while wearing his fireman's hat. It's not who he is.  It's part of who he is, certainly, but not any where near the most important part.   He can be anyone he wants to be when he grows up, just like any other child.  His journey will just be a little different than most.

Temple Grandin

Dr. Temple Grandin is a woman with Autism who is the subject of an HBO movie with her name as the title.  Claire Danes stars in it and it won several Emmys.  I have not seen the movie, but I plan to.  This is a lecture she gave explaining a little about how the brains of people who fall within the Autism spectrum are different, and why the world needs people with Austism and Asperger's.  She is very successful in her field of work, and she attributes her success to Autism.  She is an advocate for kids like Ben.  I don't always have much patience for lectures, but this is pretty fascinating and insightful.  Please check it out if you are interested.

Temple Grandin: The World Needs All Kinds of Minds

Two Words

Asperger's Syndrome.  In short, it is an Autism spectrum disorder, thought to be high-functioning because of its preservation of linguistic and cognitive development. 

If  you look it up, you will not see my son, Benjamin, in most of the descriptions or symptoms.  He does not flap.  He does not stare off into space endlessly.  He is not obsessed with pieces of toys.  He hugs, kisses, laughs, loves to be snuggled, loves to play interactive games, and loves to learn new things.  He does sometimes avoid eye contact.  He does mildly obsess over fans and musical instruments.  He has trouble with social skills and initiating play with other kids.  He does freak out in new situations and crowds.  He has a heck of a time with transitions and unexpected changes.  He can throw an impressive tantrum.  He also did not talk until he was 3&1/2, which led to some confusion when he was diagnosed, but he has struggled with some physical issues from our complicated pregnancy and his premature birth that probably delayed his speech. 

Those issues didn't cause it, I didn't cause it, and for everything I've read that claims to know what causes it, I find at least a dozen more published statements to contradict it.  It is mysterious, almost impossible to fully grasp, especially because every child who is diagnosed as somewhere in the spectrum is different in many ways from every other one.

I will tell you, hearing a doctor utter those words hits you like I imagine a Mack truck full of bricks would.  And you have to immediately decide how you are going to handle that diagnosis, as suddenly every single day becomes important in helping your child.  Are you going to try to find another specialist who might say something else?  Pull a Jenny McCarthy and look for a cure while declaring yourself a "warrior mom"?  Writhe around in denial and try to ignore it?  Buy buttons and T-shirts that say, "My child has Autism.  What's your excuse?"  Try to hide it?  Scream it from the roof tops and dare anyone to have a problem with it?

My response was, and still is, to hit the ground running to find and gather resources to help my son cope.  I have learned a great deal in the last few months but often still feel as if I know nothing.  Some days I am okay, and some days I struggle.  Every single day I am struck by the power of my love for my son, and I am constantly learning lessons and finding shifts in my attitude toward just about everything, including my students and the people in my life.  I have not, unfortunately, developed more patience, and I am constantly aware that all of the resources Ben needs are not in place yet.

I have shared his diagnosis with some people, but I am beginning to feel very strongly that it is not and should not be a secret.  There isn't anything "wrong" with him, or my parenting.  He is different, but not inferior.  He is unique and he is amazing, and he is the best gift I have ever received.

I briefly considered having a T-shirt made that says, "Didn't your mother teach you not to stare?" for those times when he freaks in public and that is all everyone seems to do, but that isn't really my way.  Having an outlet is, and that is my hope for this blog: to have a place to go to let it all out, whether the "it" be joys, frustrations, celebrations, set-backs, or anger at people too narrow to understand that all children are different, special, and valuable.

And most importantly, I hope this will be a place to celebrate Benjamin.