The Curtains.

In the classroom, the child was terrified.  Looking around there were only waists, skirts, pants, muffly voices of adults in a line that felt all too crowded.  Holding tightly to the mother’s hand, the child’s heart was beating fast.  Beating with fear of the unknown.  The crowd thinned.  Registration was over and all the children had to take their seats.  The grown -ups were leaving.

Mama left.

The child was scared, quiet.  Did not want to talk.  At the same time, the child was fascinated with aspects of the classroom.  Eventually, there were reading groups.  The child’s nose was highly sensitive.  Smells were strong and evoked strong reactions.  The books had a delightful musty, intoxicating smell.  The pages were worn but colorful.  The words came easily for the child.  The child knew how to read before ever being taught a word.  The pictures helped the words flow.  The two just went together.  The children in the books were all so happy and playful.  Sometimes, the child just wanted to step inside the soft, worn pages and become one with the people inside the books.

There was play time.  The child was fascinated by a puppet station to which the children could rotate in groups and play.  There was a stage and puppets.  How awesome to talk through a puppet while hidden from view behind the little stage!   More than that, touching the puppets in their colorful costumes and the velvet curtains around the stage upon which the puppets performed was beyond exciting!  The velvet curtains were so soft and purply-red.  They were magnificent with soft gold cords.

Old time chalkboard eraser…

There was chalk and chalkboards.  If you were really good, you could earn the right to go with the teacher to the basement (scary as it was, with no windows and closed doors, bare lightbulbs above a concrete, hollow and echoey passageway, casting shadows) and use the eraser cleaner to remove the chalkdust from the extra large rectangular, soft, white eraser.  The coveted chalkboard eraser that otherwise only the teacher could touch or use.

There was story time where all the children sat around in a semi-circle.  The teacher would read a chapter from some exciting book each day.  With each page she read, she’d turn the book around and slowly let everyone see the picture from the words on the page.  The child was fully absorbed in these stories and not really cognizant of the stomach ache that meant the need to be excused to the restroom.

The teacher had to take the child to the office one time.  The child had an accident.  Mom had to come take the child home.  The child was made to feel ashamed and bad for not raising a hand and asking to use the restroom.  But the child was afraid of the restroom and did not want to go alone.  The child never used the school restroom.

Holding it in so often led to much stomach pain for this child.  Eventually, during the school year, the doctor felt the unexplained stomach pain warranted a trip to the hospital.  The child was required to stay overnight in the children’s ward of the hospital, while tests were run.  The child was afraid.  Again, not speaking much or protesting because the child lacked understanding of what would happen there.  The child, who was never separated from the parents, was left alone in the children’s ward overnight, crying to get to sleep.  There was a discharge in the morning with a new toy from the parents who did not like being separated from the child either.

Despite the love, the child was belittled by the mother, after the release from the hospital.  The mother made fun of the child’s stomach ache, as though the child exaggerated it way out of proportion.  The mother scolded the child for scaring the poor mom.  Since the child was so “loved”, the child felt more shame because clearly, having the stomach aches was bad, and the child had disappointed the parents.

There were times when the voices from the television became garbled for the child.  The words came too fast.  The child just wanted the TV off.  The voices were rapid and harsh, like someone was talking a million miles per hour.  Overwhelmed, the child would go into a tail spin.  Holding ears and running to bed to cover a head with a pillow, the child would wait it out, sometimes in tears, sometimes just holding it all together.  Sometimes, the child would run for comfort to the nearest parent’s arms.  Eventually, the voices would return to normal.

When either parent asked what was the matter, the child could not articulate this strange course of events.  The child would say, “Everything was going too fast.  The voices were too fast.”  The parents did not understand.  The child was placated, patted gently and told, “You just need a nap.”  “Take a nap and you’ll feel better.”  The child could not fall asleep in the middle of the afternoon.

The one game that the child recalls at this age was hand writing out math and spelling sheets and passing them around to neighborhood children younger to “play school”.  The other mothers would often ask the child to “play” this game, although it seemed the other children did not like to play.  Often, the child played alone.

Eventually, a report card came home with excellent progress for that child but in a note, the teacher wrote she was concerned that the child did not have but one or two “friends” and really needed to socialize more.  The mother, highly agitated by the teacher’s words, said the teacher was wrong.  The mother quizzed the child to reassure the mom that the child had sufficient playmates.  The child always agreed with the mom.  After all, it was the mom.  And for years after, the mom would demand the child find more friends, go outside and play with strangers, and knock on doors to play.  The child did not.

Do you think that child was on the spectrum?

That child was me.  That was first grade.  I was six years old.  Tootles will be six in a few weeks.  I hope he will always have different memories.  And I hope he always knows who he is.  

I have never hidden his autism diagnosis from him.  I know for every parent it is different.  Some parents do not share and I’m not writing to change anyone’s mind. 

I’m only saying that in our world, autism is full of open windows.  I don’t ever want a dark curtain over my son’s world.  I’ve only recently begun to remove the curtain over mine.  

Thank you to Sam for helping me find the cord.


About solodialogue

I'm a lawyer and the mom of a 6 year old boy with autism. I work part time and spend the rest driving here and there and everywhere for my son's various therapies. Instead of trying cases, I now play Pac-man and watch SpongeBob. I wear old sweaters and jeans and always, always flat shoes to run after my son. Yeah, it's different but I wouldn't change it for anything. The love of my child is the most powerful, beautiful and rewarding aspect of my life.
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23 Responses to The Curtains.

  1. Rob Rubin says:

    Thanks for such a great and poignant post. We are lucky enough to homeschool our 5 year old Aspergers son who has many of the same issues you experienced as a kid.

    We talk openly about his condition and try to spin it as a positive not a negative.

    I feel like keeping him home has helped us focus on addressing his needs better than a public school can.

    • solodialogue says:

      Thanks Rob! Telling a child is a huge issue for some families but we have always been open and positive as well. Lucky for us, my son has thrived in his NT kindergarten so he is in the right setting for now. And despite the difficulties, I think public school was the right choice for me as well.

  2. Mom2MissK says:

    Wow. Your description of school really took me back… The books, the smells, the chalk board erasers, the machine in the basement… It was like we were in the same class!

    Unlike your experience, my mom was very sympathetic to my brother and me. She took our ailments and social struggles very seriously and constantly went to bat for us with doctors, teachers, other parents, even friends. She showed us how to cope and participated in our lives any way she could – fom volunteering at our schools to teaching bible school. I’m not saying our parents’ loved either of usany more or less – just differently. I think you’re more they type of mom like my own mother – maybe that’s why I like and respect you so much!

    • solodialogue says:

      Your mom sounds awesome! Well, not just cuz you compared her to me…;)

      My mom loves me in her own way. Being a foreigner and a pushy Asian mom, her desire for me to succeed did work itself out and I do love her for the good advice she gave me growing up. My parents were human. There were tons of good things and a few not so good. I want T to always think of me as you think of your mom!

  3. Flannery says:

    Wow, what a great memory and wonderful descriptive writing! Whether or not you are on the spectrum is inconsequential, you turned out to be a wonderful adult. And T couldn’t ask for a better, more understanding mommy.

  4. Patty says:

    This is such a moving post. I worry that my son has many of the same feelings in school as you did. he comes home complaining of headaches, because everyone talks too much. I am trying to get the school to make more accommodations and I have insisted that the teacher quit making Danny miss recess so he can finish up work. I take him seriously, but I know this year school has not been a pleasant place for him. Luckily, he’s switching to a new school next year where the special ed teacher seems to get autism and sensory problems. Your post really illuminates what it must be like for many on the spectrum. Your son is lucky to have a mom!

  5. Thank you. That brought tears to my eyes. I was that child too.

  6. Lisa says:

    Isn’t it amazing how much more enlightened we become of our own selves as we watch our children grow and experience life? The upside is that we know that we are doing well as adults, and that gives us hope, for them.

    You know, I could have been that girl…in first grade…very much so.

    • solodialogue says:

      Yes, it’s amazingly strange! Little pieces fell into place over the last couple of years for me but I would put them aside or discount them to focus on my son. And that will always be where my focus is. But since I’ve been reading Sam’s posts, things really clicked and resonated with me. I had to acknowledge what it was. It’s good to know that you too could have been that girl. (((Hugs)))

  7. utkallie says:

    Girl. I am sitting here bawling my eyes out. I wasn’t even through the first section when I started to get paranoid that you had tapped into my brain and were writing about me. I’m just in shock at every bit of that and how it was me. The stomach issue, the smell of the books, the feel of velvet and……the fast voices. My whole life I have NEVER gotten anyone to understand what I’m talking about when I talk about the sped up voices. I still have it happen with radio, TV, and people talking to me. When it happens to you, do you almost feel like the world is starting to spin out of control and get a giddy feeling until the point of being so overwhelmed and overstimulated that you want to puke? I probably sound like the craziest person ever writing all of this out to you but I’ve never had anyone admit to having the same sensitivities to that degree.
    So much of what happens with my kids, I understand because I’ve been there. I don’t know what diagnosis they would have given me as a child but I do wish now that I would have had help with my sensory issues.
    Thank you for sharing this. ❤

    • solodialogue says:

      Oh sweet Allie! You brought me to tears in telling me that you understand the voices thing! I too, have never been able to identify with someone who understood it. It does not happen for me anymore, but it is exactly as you described it. And no, it does not sound crazy to me at all! I was very nervous about posting this story but the response has been very positive and I am grateful! I have learned much about my friends that bonds us in new ways. ❤

      • TMBMT says:

        I don’t think about it much these days, but I think I had an issue very similar to this. I never called it voices, just “noise”. I could never link it to any particular thing, like TV or anything, but sometimes something I heard on the tv/radio/whatever would set it off. Every once in a while I would be sidelined by what seemed like the sound of a bunch of people talking at once, I would get completely overwhelmed and get the flight response, but there was no escaping from it. I always kind of assumed that I had some repressed memory of something that I got reminded of every once in a while, it was the only way I could make sense of it. It still happens once in a blue moon, but it’s more of a gestalt now, and usually only lasts for a second or two.

  8. This is an amazing and powerful post. And you are doing a great job with Toodles.

  9. Lizbeth says:

    I was the kid sitting next to you. Pulling my hair out till I had bald patches. No lie. I do believe we are kindred spirits.

  10. Broot says:

    This was wonderfully written, Karen!!

  11. Funny how many of us look at our own childhood differently whe we become parents of children on the spectrum. I too was hyperlexic and solitary, we would definitely have been school friends. 🙂

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