Four Stages

*This is a post that I didn't want to write, but has been haunting me for days.  I hope that, when my son reads this years from now, that he knows how much I love him.


Stage One:  Celebration
October 18th was Noel's 5th Birthday.  It was momentous for many reasons.  It was a celebration of five long years of life.  It was his first birthday party with friends.  It was two hours of tears (his), frustration (ours), and epiphany (mine).  It was then that, maybe for the first time, I thought, "There's something wrong with him."  And it broke my heart.  But more about that later.

This is the first year that Noel's shown interest in having a birthday party with friends.  Thinking back, I'm pretty sure he was motivated solely by the possibility of gifts.  But whatever the reason, we were happy to oblige.

The party was dinosaur-themed.  The activities were a surprise.  Knowing what I know now, this was a HUGE mistake.  Monumentally bad, in fact.  He didn't want to drop the capsules in a jar of water to see the spongy dinosaurs at the end of the party.  He wanted to open presents.  And when we said that was fine, we'd open presents once everyone arrived, he stood at the front window and wailed and paced until the last person walked through the door.

We opened presents.  He tore through them as you would expect any five year old to do, and then, while we were setting up the next activity, retreated to his room.  Confused by our pleas to return to his friends, he came back down the stairs.  We painted rocks and decorated gift bags.

We did a Dinosar Walk.

We did an obstacle course, played Bingo, and hit the highly-anticipated pinata (which actually became "bash the pinata on the ground" when it fell off its rope after the first hit).

We ate dinosaur nuggets,

and, in a rare moment of elation, ate the birthday cake he'd been talking about for months.

We breathed a sigh of relief when the party was over.  We were grateful for four wonderful boys from the ward who were good sports, and didn't seem much bothered by the fact that their person of honor had his own agenda.  And what did he say when the door closed on the last retreating guest?  "Thanks, mom!  I had SO much fun!"

Stage Two:  Revelation

Here is my son as I sent him to his first day of preschool:

Yes, he's holding his blankie.

I was excited for him.  The preschool's reputation was excellent, and we'd been lucky to have secured a spot.  He'd had a few problems at the preschool last year, but not anything that a few added months of maturity and development wouldn't fix, right?  After two days, he was the subject of three "incident reports".    One for refusing to get off the bottom of the slide and kicking the teacher who tried to remove him,  another for flailing about at circle time and accidentally hitting one of the kids, and the last one for tugging on the rope the class was holding, and frightening one young child half to death.  Since then, we've heard about his difficulty with transitions, his fits over taking turns, whining when the activity didn't agree with him, yelling and interrupting the teacher, and refusing to go outside during playtime, but then later trying to bolt from class.  At this point, he's been to class six, maybe seven times?

I have an amazing pediatrician.  Very early on, he became concerned about Noel's sensory issues (freaking out when the dr. tried to check his ears, etc.), and had referred us to an occupational therapist for Sensory Processing Disorder.  But this didn't seem to fit anymore.  His sensory issues weren't the only problem here.  And so we returned to the pediatrician.

On October 28th, he told me that my son had Asperger's Syndrome.

Stage Three:  Desperation

I didn't know much about Asperger's Syndrome.  Only about as much as I'd learned on reality television.  So, the only thing I knew for certain was that he still had a real shot at becoming a top model.  "But my son can't be autistic!" I thought.  "He's affectionate and verbal and way more social than my 6 year-old." But as I did the research, the pieces of the puzzle slowly began to come together.  That damn puzzle, whose hundreds of pieces were laid out in plain view for five years!  It explained so much:  why vacations are a nightmare, and returning to our house brings him such a palpable sense of euphoria; why he is terrified of loud sounds, balloons, dogs, and the Backyardigans; why he watches the same TV clip or show time and time and time again; why he is still watching the same TV shows he was watching when he was two; why he has no emotional attachments to any friends and, when pressed to name his "best friend", says Keilana, a girl from his primary class who, undoubtedly, does not feel the same; why he has always described things so oddly, and why a two-way conversation with him is so tedious, bordering on impossible; why he has inexplicable meltdowns that seem to go on forever; why he seems to ignore you when spoken to, and avoids eye-contact, especially with people he doesn't know well; why he often retreats to the garage when stressed out by being watched by a babysitter; or why the train set and the car tracks and the legos never get any use after his older brother tires of them.  

The flip side is, he is a whiz at anything electronic, which is how he spends all of his free time.  He knew his shapes and the alphabet when he was learning to talk.  He had his brothers early-reader books memorized after hearing them read once or twice.  He is moved by music, once he gets over the initial shock of its sheer volume.  He is the most affectionate child I've ever met, and I am the lucky recipient of his many, many hugs, kisses and cuddles.  He is, 90% of the time, much easier to parent than his older brother, since a computer will keep him occupied for as long as you'll let it.

As the puzzle became whole, I cried.  I cried for the future, when being a quirky teenager is much less acceptable than being a quirky kid.  I cried when learning that, as a result, the possibility of depression and anxiety is a very real concern for him.  I cried when I thought of all of the people who wouldn't understand, and would already hold him to a higher standard because he is bigger and older than all of the kids in his grade.  I cried thinking about how he wants to be "good" so, so much, and how he doesn't even understand what that really means. 

Stage Four:  Determination

And then I stopped crying, and I started reading.  The stack on my nightstand currently contains four books about Aspergers, my scriptures, and four trashy chick lit novels (a girl has got to make it through the day -- I thank my "stories" and chocolate).  I will soon become, I believe, the "foremost expert on Aspergers that doesn't have a degree or any sort of credentials".  I've already learned a lot.  We've started posting a daily schedule and are soon starting on social stories.  He sits on a balance disc to eat and do homework, which I make him do every day to help him focus.

Because, ultimately, he's more than a diagnosis.  He's my Noel.  He has been, and always will be.  The only difference is that now I know I can help him.  And there's great comfort in that.  I also take comfort in knowing, with 100% surety, that I volunteered to be his mother in the preexistence, under these conditions.  It totally sounds like something I would do.  I overestimate my abilities on a regular basis. I also take comfort in knowing that I have a partner in all of this, a husband who is supportive and loving and is a shoulder to cry on when I've gotten another report from preschool.  I am not unaware of all of the blessings that have brought me to this place.  And I'm sure that, sometime soon, I'll see his autism as a blessing as well.  But until then, I'm going to go read my chick lit and eat a Milky Way.  Oh. . .Milky Way. . .