Competitive Autism

My “typical” eight year-old son goes to this awesome private school. It’s so good that my husband jokes around with his Dad friends that they are stuck in Georgia. Even if they got better jobs somewhere else, they wouldn’t want to leave this amazing community. It’s such a good school, that when one of my son’s classmates, left for financial reasons to go to the public school across the street, her Mom started a blog talking about how much she misses the school.

One of the reasons the Mom left this amazing place, she writes, is “it’s no fun to feel like the only ones struggling among an affluent group” (sparkymom.blogspot.com).

In other words, she doesn’t want to be poor around rich people.

I started to think, “What have I given up that’s precious to me, because I don’t want to feel poor around rich people?”

We used to have these friends and neighbors who had a baby the same age as Cal. We hung out together. We would order pizza. We’d have playdates.There was a feeling of comfort and safety with these neighbors and friends that I haven’t experienced since.

I have chosen not to see or speak to these friends in almost ten years. Why?Because I am too afraid to feel poor around people who I believe are richer than me. This is how they are rich: their son was diagnosed with autism as a baby. My son was diagnosed with autism at three years-old. Now, their kid has barely any signs of autism and goes to a regular school without any helpers. Their kid is almost cured and my kid is not.

Because of the training I’ve received in helping Cal, I’ve learned how to talk to myself. Yesterday, I said to myself, “Why am I afraid to see my old friends who’s kid is doing “better” than Cal? What am I needing from them that I’m not giving myself?”

“I’m not feeling like I’m a good Mom.”  I said.   “I am giving myself the feeling that it’s my fault Cal is still autistic. I don’t want to give up things that are precious to me. So, I’m going to let go of believing that it’s my fault that Cal is still autistic.” I cried on and off for almost two hours and let go of my belief that’s it’s my fault that Cal is still autistic.  And, oooooh, it felt good!

Today, I was with Cal and he wouldn’t put his underwear on. I initially felt like somehow it was my fault. Then I said to myself, “Do you want to give up things that are precious to you as a result of you judging yourself?” I said, “No”. So I told myself what a good Mom I am. Without my self-judgment, I could see Cal so much more clearly. It may be hard for him to get up. Putting on underwear would require him to move. So I happily turned on a fan and put a snack on the table to motivate him to get up. He got up and then put on the underwear easily.

Then when Cal did something “autistic” and I judged myself, I would remember my commitment.  I would think what a great Mom I am. Our session went great today. We were really connected! Cal did not do anything out of the ordinary today. However, when Cal wouldn’t do what I wanted him to do, as opposed to blaming myself, I would remember how great I am. I was so much more creative and free than usual, and we had a beautiful afternoon together.

 

16 Responses to “Competitive Autism”

  1. kim says:

    rich? you are rich. in every right way. xoxo

  2. Sarah says:

    Thank you for sharing this… Your words are powerful.

    I feel guilt around the loss of Charlie, and then guilt about the time I lose with Liam as I mourn or just feel angry. But, on my good days (which have grown to many more has time passes), I hold my head high and know that I am a good mom. Such a different journey, but your thoughts feel familiar.

    You are an incredible mom!

  3. SiteAdmin says:

    hi sarah, thanks so much for commenting. it’s really nice to know how you are feeling. i just read a book called, “Giant Steps” by Barry Neil Kaufman. the book helped me a lot with days like you described. love, penya

  4. SiteAdmin says:

    hello kim — hope you are doing well. thanks so much for you sweet sweet comment!

  5. Eric says:

    It is hard to comment on this – I live it… I can make some off the cuff comment but I won’t. I don’t want to cry “on and off for almost two hours”. I would prefer to “let go of my belief that’s it’s my fault that Cal is still autistic”. Maybe tomorrow.

  6. SiteAdmin says:

    i’m excited for tomorrow!

  7. Julie says:

    thanks for reminding me that ‘rich’ and ‘poor’ have many meanings. i lose sight of that a lot in Los Angeles. I’m so proud of you for letting yourself learn all these amazing lessons. It teaches me so much. And next time you do cry, know that i’m comforting you from thousands of miles away.

  8. SiteAdmin says:

    thanks julie!

  9. ellen sandor says:

    I JUST read this, again, how honest and powerful are you. How blessed are we all to have you in this world of ours. You are, and always were, a great mom and daughter. I love you so.

  10. SiteAdmin says:

    Thank you.

  11. Jeffrey Simon says:

    What a beautiful and moving piece you wrote! Reading it made me feel “rich” today. Rich for having such a wonderful and incredible niece like you! Love you.

  12. SiteAdmin says:

    thanks jeff!

  13. richard says:

    I cried too. Words fail. I am so proud of the woman, wife and mother you have become. I love you. Dad

  14. SiteAdmin says:

    thanks so much. you are great!

  15. gretchen says:

    wow penya…so true we all need to look around we are all rich in so many ways but in our crazy world we have to remind ourselves of this. thanks for the reminder. keep it coming

  16. Jan says:

    When I read this, it made me cry. You obviously are a very patient, loving mom who has done so much to help Cal.

    Your old friends miss you! We remember those times together in Lincoln Park as some great fun and happy times with good friends.

    I sometimes feel what I would describe as survivor’s guilt. Our son got some of the same great therapy and suppport as other autistic kids, but not all have had the same outcome. I attribute it to the way they are wired but it definitely seems unfair.

    I have a friend whose son is the same age as Danny. We met in our OT office when our kids were 3. Her son is essentially nonverbal and is still very challenged in many ways. He and Danny had some of the same therapists. Why the different outcome? I wish I knew.

    The last thing I/we would want is for Danny’s progress to cause you pain!! If keeping a distance is easier for you, we understand and respect your choice.

    Cal is lucky to have you both as parents! Try to banish that guilt.

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