An Open Letter to the Mom in the Doctor’s Office Today

I overheard your friend (daughter? niece?) reading to you from that questionnaire today, and I took notice because of all of your “no” responses. I immediately remembered those soul-crushing, developmental, yes or no questions, the mix of defensiveness and hopelessness when you begin to understand just how far behind your little one is.

“Does your child point to an item s/he wants? Does your child turn pages of a book independently? Does your child say three words?…”

And on, and on, and on. I heard the tone of your voice change the more she asked. I heard you begin to whisper. I glanced at your face to see if you might cry, but you were holding it together. I guessed the tears may come later when you are alone, maybe before you fall asleep tonight.

And I watched your little one. I watched him smile, and observe the other children playing – he was watching close, but something was keeping him from playing along. He looked at me and made eye contact. I waved and smiled. He smiled bigger and looked to you for reassurance, but you didn’t notice.

I wanted to say, “This tall, gangly boy of mine sitting next to you didn’t do any of that stuff either. We had to use flash cards to teach him words. He didn’t point at anything.  They thought he was cognitively impaired because he played with the toys wrong.  But you know what? He is the best speller in his class and uses words like ‘misheard’ and ‘eclectic’ as an almost-seventh grader!”

I really wanted to say, “These questionnaires are a special kind of torture for us, and you are most definitely one of us. You are not alone.  Don’t discourage too quickly.  Be hopeful, because he needs you to be. I have been in exactly that spot where you are sitting and it is awful, but better days are ahead. Believe in that little boy.”

But I didn’t say anything because I’m not sure I would’ve wanted anyone to do that when I was in your place. Maybe I should have. Instead, I hope you get the support you need through this process, and that you realize quickly that he needs you to just do what you gotta do to get him as close as you can to where he needs to be.

And that there are lots of us rooting you on, even if silently from the chair next to you in the doctor’s office.

My little blond boy, once upon a time...

My little blond boy, once upon a time…

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A Poet in My Own Mind: “Autism”

I enjoy writing.  Always have.  I took a creative writing course in college and had a great deal of fun, especially with poetry.  Fun does not necessarily translate into good, so I apologize in advance.  I’m not the type to subject my poetry on others, but when I ran across this poem that I must have written in a desperate moment, I’m guessing about three years ago (based on the Wubbzy reference), I thought it might resonate with others going through similar desperate moments.

Autism

Short

definition:

A neurological disorder…

Long

definition:

Something not quite

right.  Speech delay

Speech therapy, Occupational

therapy (hypersensitive, hyposensitive,

Gross motor – Gross like large not like

yucky, fine motor) From flashcards

to reading two years ahead

Obsess, obsess, Obsession

for months (Pizza rolls every single

night for dinner) (Wubbzy AGAIN?)

laughing, joking, never gets

old.  Still no empathy.

Logical, linear, Spock-like, must

follow the rules, follow the law, follow the

schedule.  No deviation, no changes, no

surprises, no fire drills or we derail.

anticipate, anticipate, anticipate

lay the clothes out, take the meds, follow the

schedule.  Nothing dirty, no holes, no stains,

hide the clothes when they get too small.  Still

might come back to bite you,

kick you, pull your hair, scream, cry, lie

down in the middle of the aisle

suffer the stares, the whispers, the grandma shaking her head, “Mm, mm, mm.”

(must learn that Vulcan death grip – what happens

when he gets bigger?)

What happens next? One day

One day at a time, one day

one day

Breathe, exhale and relax.