It Took Me Long Enough

I've been meaning to start a blog about raising a son with autism ever since he was diagnosed at about the age of 4.  He's now 7 and I'm just now getting around to it.  I've been busy.  I've been grieving.  I've been looking for doctors.  I've been talking to teachers and answering emails and fielding calls from the school principal.  To sum up, there's been no time for me to expound on the good things and bad things about parenting a child who lives in a (sometimes) misunderstanding world. 

Definitions:
autism spectrum disorders (ASD):  This term is not officially used on the Diagnostic and Statistical Manual but the expression is used sometimes because there is a continuum of deficits and issues that exist throughout all of the disorders such as classic autism, pervasive developmental disorder (Drew's diagnosis), and Asperger's.  The DSM-5 will most likely move to an umbrella diagnosis of "autism spectrum disorder" or ASD.  There are a wide variety of issues with people on the AS but the problems that are usually most noticeable to society are a lack of or difficulty with social skills and social interactions.

pervasive developmental disorder (PDD):  This is where things get confusing because some researchers consider PDD to be an "umbrella" disorder under which they would put Aspergers and autism.  It is characterized (as other autism disorders are) by social deficiencies and perseverating or repetitive behaviors and narrow interests.  To add to the confusion, there is also a diagnosis of PDD-NOS (not otherwise specified).  This is used when the criteria are not there to diagnose autism or Asperger's.  Drew was diagnosed with PDD-NOS.  There is a lot of gray area still in the diagnosis of ASD, which compared to some psychological problems, is relatively new.  Some specialists might say Drew has Asperger's whereas some other might say he has PDD.  It's very fuzzy which can be frustrating when you are me.  I am a science teacher by education.  I like concrete answers.  The prognosis for Drew is quite good and he will most assuredly have a great life as an adult.

neurotypical (NT):  I love this word.  It was coined by those in the autism community and is used to refer to those of us NOT on the spectrum or what society perceives as having "normal" abilities to read social cues and interact with people in expected ways.  I don't know the exact history of the word but I imagine that some autistic people got tired of hearing the word "normal" to describe non-autistic people.  For people who are autistic, the way they interact with people IS their "normal" but maybe it just isn't accepted as such.


Everyday Life With Drew:
The first thing most people notice about Drew once they start talking to him is his remarkable vocabulary.  At 7, he can read (but with weak comprehension) at a 4th grade level.  His comprehension at his first grade level is good.  He has always been good at picking up words, remembering them and using them correctly.  He seems to enjoy math quite a bit and often figures out the answer without the "show your work" aspect that most teachers insist on.  He is funny.  He is a good actor.  He uses a computer independently and can work all of the remotes that are required to watch TV, a movie or play games.  He has a remarkable memory.  He can be organized when he wants to be.  He likes school.  He is great with adults and older kids such as our babysitters.

Those are the good things about him.  When Drew is having a good day, he is a real joy.  He's fun and inquisitive.  However, he wants everything a certain way.  He can be inflexible when it comes to food.  He gets upset by loud noises so going to a regular movie is out of the question.  He is often angered when the schedule changes.  First days back at school after a break are usually not good days.  First days of vacation when school is out are usually not good days.  He asks a million questions about very simple things such as going to the doctor, going to the mall....he always has to know what to expect.  He gets anxious easily.

Parenting Drew does not allow for "letting your guard down" or having a relaxing outing to the park or whatever.  We have to anticipate many things....will he eat what's offered, will there be something loud there that will upset him, will he be okay with the other kids, etc., etc.  Bobby and I have often remarked to each other that parenting Drew requires more than we ever thought we'd have to give.  Staying one step ahead of Drew and Drew's brain is exhausting.  I never really notice this until he's with the grandparents for a visit or Bobby and I get a weekend away.  When this happens, I find myself actually relaxing...truly being calm...turning part of my brain off. 

Drew's diagnosis was not a surprise.  My background and Bobby's profession have afforded us a lot of knowledge on special needs children.  We knew there was "something" going on with Drew but we weren't sure of the exact diagnosis.  Upon getting that diagnosis, I had two feelings.  One was that of relief because for awhile we just chalked up Drew's difficulties to our parenting.  We KNEW we were good parents but when your child is having problems, who else can one blame?  My second feeling was that of genuine grief and sadness.  I had to grieve for the child I thought I was going to be raising.  I think I still am grieving a bit and I might always be on some level but I can't let that get in the way of getting Drew the best help we can find.  We have been so blessed by the caring professionals placed in our path.

Drew is a remarkable kid.  Terribly smart and funny.  He is by no means an "easy" child to raise but I think that because we have to work harder to help him, we are getting far more appreciation and joy out of the good times than if Drew were a neurotypical child.