Eighty-Two

I have written before about how hard it is for me to go to evaluations with Mini.  It's also hard to sit and listen to evaluators tell me about him, or to read reports in summary of him.  Most of the time, it feels something like this:

"This is wrong,
       that is delayed,
                 this is atypical,
this is wrong,
            this isn't developmentally appropriate,
                 this is bad,
 this is delayed,
          this is below average,
                  this is atypical,
                            this is atypical...."

.........

.........

AND ON AND ON AND ON AND ON, ad nauseum.

Okay, maybe it isn't that bad, but when someone sits and gives you a litany of bad news about the little person you made, whom you love so passionately that the love you have for him cannot be separated from the love you have for yourself, it feels like a seven-thousand-page long litany.  In short, friends?  It crushes me.  It feels kind of like my heart is the printer in the printer scene in Office Space.  The difference is, the printer deserved it.  My heart doesn't.

This past week, however, things were different.  I had a meeting with Mini's teacher, the Assistant Principal, the School Social Worker, and a School Psychologist to discuss the results of his assessments in preparation for developing his kindergarten plan.  The meeting was SO encouraging.  I think the difference is that most of the people in that room really knew Mini.  They have a sense of his strengths because they SEE them, not because I tell them.  They have a sense of his growth because they are the ones that have made him grow!  The evaluations they perform include information across months of data collection periods, not just minutes.  I never dread reading evals from his therapists, because they KNOW HIM.  I realized that this was a similar group of women.  They talked about him like he was a little dude they know.  Like he has a personality and a smile and a laugh they've heard.  They talked about funny things he does, the sweet ways he's interacted with them.  They called him by name and didn't have to look at their notes to remind themselves first.

I showed them the picture I took of him this morning, after he chose his own clothes and put them on himself:

Last year when he was evaluated by the school district, he was 44 months old (they do it in months).  His cognitive scores placed him two years behind almost across the board, at 24 months, with scores ranging from 22-36 months.  This year, in many of the evaluated areas, he scored between 48-60 months!!  YOU GUYS, HE IS 58 MONTHS OLD!  So that is AVERAGE!  His scores ranged from 36-60 months, but the progress is marked and measured and true.

And here's the best part.  The Speech Therapist did not attend this meeting and they couldn't access her full report for some reason.  However, they were able to tell me that in his receptive language evaluation, he scored an 82.  EIGHTY-TWO.  His expressive language score was a 71.

GET THIS, you guys.  SEVENTY-SEVEN IS AVERAGE.

Let's just think about that for a second.   Last year he would hardly speak to the speech therapist that evaluated him.  He scored about a 60, which is more than a year behind in language- classified as a "Severe Delay."  He was almost four then, and had the language ability of a two year old- and that was being optimistic.  I had to fill in the blanks for the therapist when he consistently refused to participate with her.  That was one year ago.  12 months.

Twelve months of 23 hours a week of therapy.  12 months of me never letting him get away with anything at home.  ("Juice!"  What do you want, buddy?  "Juice."  How do you ask for juice?  "CAN I DRINK SOME JUICE PLEASE?"  Sure, buddy, let's go get some!)  12 months of planning, preparing, creating, teaching, driving, begging.  12 months that, in the end, have grown my little guy as much as THREE YEARS.

This doesn't mean he's suddenly a "neurotypical child."  This doesn't mean that we're done.  This doesn't mean that he is no longer Autistic, of course.  He still can't communicate like a typical child, he still has self-stimulatory behaviors and recites lines from movies and TV shows over and over again, and he still has very little sense of appropriate personal space or give and take conversation.  He can't play a game with his peers because he doesn't fully grasp turn taking and following rules in that way.  He still doesn't, and will probably never, learn the way that other kids learn.

But can you believe the progress?  I'm not sure it's possible for me to communicate what it feels like for me, but I'll try.  It feels like the moment you walk out of your last final exam of the school year.  It feels like the moment you cross the finish line of a race you trained for for months.  It feels like driving down the highway on a 70 degree day, with no responsibilities and plenty of cash, with the windows down and your favorite song playing way too loud.  It feels like your toes in the warm sand for the first time after a deathly winter.

It feels like gratitude.

It feels like true strength.

It feels like it actually IS all worth it.

I am still scared to death, and this undeniable, staggering growth doesn't change that.  But how about I write about that another day?  It's Mother's Day weekend, and I'm just going to celebrate.  How about that's what we all do this weekend?  Let's forget about our fears of what's to come.  Let's forget about the heartaches and failures of the past.  Let's just celebrate ourselves for the selfless, boundless love we share and a job well done.