This is a Test

In my past life, I ran Freshman Orientation at two Universities.  At these events, students had to take math and foreign language placement tests.  I had to talk parents and students off the ledge SO many times...

"It's just a diagnostic test, to see how to place them appropriately."

"Don't stress, there are no wrong answers."

"No, you don't need to study- in fact, it's better if you don't."

"You can't FAIL."

Oooooh so many parents freaked out about this.  And I never understood what the big deal was.  I wanted to remove the word "Test" from the process so people wouldn't freak out so much.

I understand now.

As Mini struggled along at all 5 of our evaluations, I sat looking on wondering how I could have prepared my toddler better for life.  Ah, let's just call a spade a spade.  I wondered how I could have prepared him better for evaluations.

"Well he's never done anything like this before," I said as the doctor asked him to build an elementary structure with four square blocks and he wouldn't copy her.

"He doesn't really know what an oven does," I said as she asked him to pick out "where we cook our food" from among six other photos.

"I've never asked him to color anything in a specific way," I said as she asked him to draw a circle.  A plus sign.  ANYTHING.

There were things that ALL CHILDREN should be doing and saying by Mini's age, and he wasn't doing and saying those things.  "All children?" I asked.  What about children in TRIBES IN NEW GUINEA!?!?!  I thought.  Can THEY build a train with blocks by age 2?

My friends and family, and even the nice doctor we saw, said we are only gathering information.  Information  is what we need so that we can figure out how best to help Mini and how best to educate him, interact with him.  This is "no big deal"...  This is just an evaluation, to see where he's at.  But when the evaluation kicks out a number, telling you your son is more than a year behind average in his language and cognitive development, that his social skills, too, are delayed....  When the evaluator tells you your son probably has Pervasive Developmental Disorder, it doesn't feel like it was no big deal.

It feels like someone kicked you in the chest.  It feels like the son you thought you gave birth to is suddenly one you never knew at all.  It feels like the mother you looked forward to being is dying.  It feels like the hopes, dreams, plans, WHOLE LIFE you had are being bulldozed and steamrolled by the phrase "AUTISM SPECTRUM."  What's worse, it doesn't just feel like that at the evaluation.  It feels like that for months and months- every time he repeats a phrase over and over again, every time he plays with a toy in an abnormal way, every time he gets too close to a friend or to his sister, every time he can't communicate his wants and needs....  It feels like a piece of my heart gets chiseled away.

It quickly became difficult to be around children who were "normal" and around moms with "normal" children. The conversations I used to have every day suddenly felt like every mom I talked to had an ice pick and was just poking it into my heart with her words.  Hearing about what little Jennie made for her mom for Mother's Day, and what little Tommy wanted for his birthday, what Joey got after his visit to the dentist, who their "best friends" were, how they helped at dinner or what they became during "dress up".  What they took to school for show and tell.  It was... still is... like dying a zillion tiny little deaths every day.  My mini doesn't play dress up, he doesn't really understand birthdays, he doesn't get the concept of "best friend".  I'm absolutely terrified of his first visit to the dentist, and if he knew what a dentist was, he would be too.  He would not have the verbal or cognitive ability to participate in show and tell.

Five months after hearing the diagnosis, I'm still in a phase where I wonder what I have done to "make him like this."  I wish it was my fault, because if it was, I could fix him.  Was his language delayed because I didn't talk to him enough, or in the right ways?  Was his cognitive delay due to my complete lack of knowledge of developmental games and activities?  Was his social delay because we chose to live in the country, without access to kids?  Why didn't I see this earlier?  Why am I so LATE!?  Will he go to college?  Will he have friends to sit with on the bus?  Will he ever have a girlfriend?  Get a job?  Move out?  Will I be 70, moving into a retirement community, wondering where my son will live when he can no longer live with me?  Why didn't I know?  Why didn't I know?  WHY DIDN'T I KNOW!?

I have heard and read that getting a diagnosis on the Autism Spectrum is like a death.  That parents have to go through the grieving process, because in essence, the child you fell in love with is not the child you have.  It's hard to separate the hopes and dreams and expectations we have of our babies from the basic, all consuming love we have for them.  Everything about parenthood is all tied together in our hearts.  They are literally married in your soul.  If you love your child (which you do), you want every single thing to be absolutely perfect for them forever.  And the Autism Spectrum is going to mean that it can't be perfect for Mini.  It's like I have to figure out a whole new method of riding a bike, when everyone I know, and everything I've learned my whole life, told me to ride it the normal way.  And my new way is ridiculously arduous and awkward and no one knows how to help me learn the new way.

I'll learn a new way to ride that bike.  In the meantime, I'll wake up in the morning, and I'll get out of bed and breathe in and out.  And I'll laugh and cook and run and make appointments and do laundry and see my friends when I can.  I'll wipe runny noses and clean up spills.  I'll be brave and I'll do and I'll love.  I'll try to do all these things while the tears fill my eyes and spill to my cheeks; while I wrestle with the existential dilemma of why on EARTH this is the life I'm made to live.  While I clamour, beg, claw and arm wrestle the Universe to grant my baby boy a life that he loves to live, where he feels and receives love and where he feels confident and safe and capable.  While I do and think and try with all my might, hoping that I, too, might feel normal again someday.