An Open Letter to Our First Pediatric Neurologist

 

 

Dear Sir,

When we walked into your office, we were tired.  We had to go to three pediatricians in order to receive a referral just to see you.  The first two pediatricians didn’t think my monkey was struggling.   They assumed he was just a typical boy, a little slower than girls, just a little delayed.

But the third pediatrician knew something was different.  He didn’t think I was just another worried mom.  He didn’t dismiss me.  We brought in my two year old little boy to him.  This pediatrician saw something in my son.  He was concerned.  He referred me to you.

When my husband, my teen daughter, and myself walked into your office with our monkey, we were tired.

I had taken countless quizzes online to see if my son had autism.  Many said yes, many said no.  I was confused.  I was scared.  I was exhausted.

You walked in with your pristine white coat.  You introduced yourself as the pediatric neurologist.  Your presence demanded respect.  Your voice and demeanor kept reminding us of the reverence you required.

You were not friendly.  You were not approachable.  Your business manner way of talking to us made us feel like we were in a business meeting, applying for a loan.

You didn’t talk to us.  You talked at us. You asked questions.  Many questions.  You wanted simple yes and no answers.  We tried to give you more than just an answer.  We tried to tell you stories, show you the person that my monkey was.  You were not interested.  You just wanted to fill out your questionnaire.

Yes, No, Yes, No. Yes No.

You would occasionally glance over at my son.  You would see his odd ways of flapping and spinning around.   You pointed out how he did not acknowledge any of us.  You would immediately write those things down.

After about 20 minutes you finally looked at us. You looked at me.  Although I purposely force myself not to remember that dreaded day, to not hear your words.  I simply cannot forget.

I can still hear your cold, heartless tone.  You looked at me straight in the eyes and said,

“Your son has autism.”

It sounded like you were saying something so emotionless, something that didn’t have much importance.

“Your son has autism.”

Like it was no big deal. Just another day in the office.

Everything was so quiet.  I don’t remember there being noise in that room.

Yet my heart exploded.  I couldn’t contain the tears.  My eyes were overflowing.  Our fears were confirmed.  You made them true. You did.

Yet as I was struggling to process this information, you saw me crying, you directed your words to me.

“Why are you crying mom?   You knew this already.”

Before seeing you, I was trying so hard to convince myself that my son didn’t have autism.  I’d see little hints of him being typical kid, and I would make me doubt myself.  I would convince myself that my son was fine.   With a few words you took all of that away and made my fear real.  Yet you didn’t care. You did not see me. You did not see us.

You told me my son would be in special education at school.  He would not be in a regular school setting. You said some kids get out of special ed and are sent to mainstream but I shouldn’t hold my breath.  You told me kids like my son don’t have empathy.  They don’t socialize.  They struggle to talk, they don’t etc…..   I don’t remember much of anything else you said.

You kept reminding me of what my son isn’t.

But I want to tell you who he is.

He loves to kiss and hug.  I keep telling everyone that he is the most loving kid you will ever meet.  He kisses and hugs constantly.  If he sees you are crying or sad, he will run over and kiss you.  Then he looks at your face to see if it worked.  If you are still sad, he will keep kissing you until his kisses make you smile.

Yes, he has empathy.

At night, before bedtime, he loves for my husband to play “Monster” with him.  My husband will hide and jump in front of him, then tickle my monkey until his laughter is so much he can’t breathe. And if my husband is hiding and the monkey can’t see him, then my husband yells”Tickle Monster” from behind the sofa, you can hear my son scream in excitement.

Yes, he socializes.

He will grab me by my hand, walk me to the refrigerator, open the door, try to grab the apple juice.  But since he can’t reach, he will look up at me and clap his hands, sign language gesture for ‘more’.

Yes, he communicates.

My son is more than the list of don’ts that you gave us.  My son is more than his diagnosis.

I hope this letter finds you.  And if  it does, I hope you can see kids like mine as kids that can.  I question if they teach empathy in medical school.  But I hope that if you ever have to give a diagnoses to another parent, I hope you have empathy.  Your words have so much power, I hope you use them well.  I hope you can learn to show compassion to these vulnerable parents.

Because if someone like my toddler understands when I need his kisses to heal my broken heart, you sir, can learn to use words to heal broken parents.

Sincerely,

Mother of a beautiful loving boy, who happens to have autism.

P.S. Below is a picture of a note from my monkey’s summer school teacher. Her first day with him. First time they met. And he was already giving hugs away.

Point Blur_Jun142016_195256

 

 

 

 

 

 

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