Thursday, October 3, 2013

A Hard Lesson

Part of the reason I blog is to clear up misconceptions about autism.  Last night Philip taught me about my own misconceptions towards him.

It was after dinner and I was cleaning up in the kitchen.  I sometimes sing as I clean, and this evening I was singing a song I made up with from some of Philip’s common vocalizations which are not words.  I’ve sang this before and thought nothing of it.

Afterwards I called Philip to the dining room for our after dinner conversation.  I asked him if he wanted to ask me a question or say something.  He spelled, “YOU ARE TEASING ME WHEN YOU SING LIKE THAT.” My heart sank.  I had never realized I could hurt his feelings in this way.  “Oh Philip.  I’m so sorry.  It makes me feel happy when I sing your words.  How does it make you feel when I sing like that.”  “SAD,” he answered.  I began to see the carelessness of my actions.  I apologized again.  “Do you have anything else you want to say to me?” I implored.  “YOU ARE TEASING ME WHEN I EAT ALONE,” he replied.  It is true I sometimes serve Philip something before the rest of the family.  I know what he likes to eat and it is often not what the rest of the family eats.  For example tonight I made enchiladas for dinner.  Philip looked hungry so I put some of the enchilada filling in a bowl and let him eat before everything was ready.  When the rest of the family sat down to eat, I served everyone the enchiladas except Philip.  I assumed he didn’t want any (from experience he wouldn’t touch them in the past.)  Again I felt warm with shame from his response.  “I’m sorry.  Do I treat you too differently?” I asked.  “Y (for yes). A LOT OF TIMES YOU TREAT ME DIFFERENTLY.”  

It makes me sad to think of how my ignorance has hurt Philip.  I have mistaken a blank face, little eye contact, and few words for not caring, not feeling, and not understanding.  Oh how wrong I’ve been all these years!  

It is a hard lesson for a parent to admit they are wrong, but it is necessary in the process to make things right.  I told Philip it was good for him to tell me how he felt.  I told him I was sorry for not being considerate of his feelings and for treating him differently.  I told him I have a lot to learn and he must continue to teach me.  Then I asked if he would forgive me.  “Y,” he answered.  We hugged and Philip leaned his head on my shoulder for some time.

There will be changes in the way I treat Philip from here on out.  I will stop to consider if the way I treat him is the way I would want to be treated (The Golden Rule).  I will try to treat him more like I treat his siblings by giving him the opportunity to partake in the family meal even if I don’t think he will eat it and by giving him more household responsibilities like the other kids.  I will continue to give him opportunities to tell me how he feels and how we can better understand each other.  And when I make a mistake, as we all do from time to time, I will try to learn the most out of it, seek forgiveness, and try not to repeat it again.   

   Chautauqua Institution August 2013


  1. This is a lesson for all of us. Philly (and all who are "different") is like all of us in so many ways, especially emotionally. Hopefully, we can all do our best to treat him the same way we treat Ana, Carlos and Lia.

    1. Yes, one of the biggest lessons I have learned is that no matter how differently we appear on the outside, we are essentially the same on the inside.

  2. Sanjay has been telling us through his writing that he does not like us talking about him at all. Yesterday a friendly neighbor came over and she asked the usual questions, her first question was" what really is autism?" I was kinda stumped.... where should I start. I did not want to be rude and I told her that it is a disorder where kids are in their own world. Then she went on to ask if he talks... I tried to keep my volume down to the lowest so that Sanjay could not hear our conversation. Later, he was mad and tried to bite me which he rarely does.
    At night, he wrote" you were talking to the neighbor and telling her that I cannot talk"
    it broke my heart.
    I am going to be braver and be a better advocate for my child. I am still thinking about how to present his case in a more respectable way to strangers and to other family members who constantly are asking (out of concern/love/curiosity) about how Sanjay is doing .

    Any suggestions?

    1. I think this would be a great opportunity for you to ask Sanjay what he thinks autism is from his perspective. I think I will try that for a future blog post. For now I have been distributing Ido's perspective of autism from his speech, "Imagine Having Autism." Here's the link:
      It gives a better idea of what autism is from an autistic's point of view rather than what we are used to hearing from a medical/diagnostic background. It helps people understand them as people, not just outward symptoms.