Participation

All week, my son looks forward to his gym class.  A time when he can run and jump with other kids his age.  A time, without consequences for throwing things in the air, for being free in open space.  “Wanna go to the Little Gym!” is the mantra I hear throughout the week.

The moment arrives.  We show up.  He runs into class forgetting all about his mom, grabs bells to shake and sits in a circle around the teacher.  The teacher explains what will happen in class and asks the kids some questions.

The gym has windows into the class.  As I watch, I’m holding my breath.  Is it just me that does this?  He has that far off look in his eyes.  He’s further back in the circle than the other kids. As the questions begin, he appears to tune out.

I know he has not gone too far.  It’s almost like he is a turtle in his shell.  With the number of children in class today, maybe he is feeing overwhelmed or shy.  I’m unsure.  He has begun the self-talk.  The turning of the head, the different facial expressions.  The clear differences from the others.  And it hurts me to know how this sets him apart, even though he cannot see it himself.  His tutor is prompting his attention to the teacher.

The teacher asks his name.  The tutor must prompt again.  Then, the teacher asks his favorite color.  He says “Viper.”  This is a toy car he has.  The teacher thinks he has asked “Color?” because really, who would say “viper” to that question?  He is prompted by his therapist.  He says “Blue.”  The teacher moves on to the next child.  The moment is past but I cannot help but have a sinking feeling when he cannot answer his favorite color in a group of kids. He further distinguishes himself by the mannerism (stim) of repeatedly wiping his hand over his mouth.  Admittedly, other children are completely distracted, and no one but me appears to pay much attention.

Who notices this stim but me?

They move on to an activity.  A time for throwing balloons in the air as they learn about following the movement of a ball with their eyes. The idea is to keep the balloons up in the air, against a wall or on the ground. The little guy loves to throw things in the air.  This is a dream come true.

He was having fun and the others in the class?  They were doing their own thing as well so that it was not a hugely noticeable difference.  He appeared to blend a bit easier here.  The NT kids kept leaving the gym and running to their moms for a drink of water or to go to the bathroom or just to whine.  Their mothers had to prompt them back into the class.

They are doing mere warm-up exercises.  The real fun began as they made a “train” and headed off in groups to their “stations.”  My son either was too busy doing something else to join, or too interested in looking at the face of the kid in front of him.  He did not easily do the train without some assistance.

The theme of the day was racquet sports.  The balloon warmup was for use in connection with the racquets.  The kids were to bounce the balloons on the strings of the racquets, repeatedly without the balloon falling to the floor.  He did pretty good!

This is really a great chance to improve hand-eye coordination without getting hurt by an actual tennis ball.  Plus, the balloons are much easier to hit with a racket!  The class was pretty much an hour of tossing blown up balloons and jumping off cushioned mats,  a great proprioceptive and fun workout for a smiling little boy.

So, the question is why am I so stressed?  Why am I so paranoid sitting with the other parents, when my son goes in to class?  I wish I could tell you that I just sat back and enjoyed the smiles I saw on his face.  But that just would not be true.

I was trying to think whether I’ve stuck a cherry in a pickle jar in the hopes it would blend with the pickles.  My little cherry can sit in pickle juice all day but if it is not a cucumber, he’s not going to finish the day as a pickle.  He will simply be a stinky cherry.  He won’t blend.  I can’t try to make him something he is not.  So, why then, can’t I simply learn to accept his disability without stuffing him into the pickle juice?

I worry about his ability to integrate.  In the scheme of life, is integration and blending really that important?  Asking myself that question, the answer will always be yes.

My son may be one of 35 million people worldwide who have a form of autism but he is still in a small minority.  Socialization is important and inherent to a healthy psyche in my mind. Socialization comes from participation.  Participation has to be meaningful.  It has to include give and take, understanding, experiencing on a similar level and communicating.  Otherwise it’s simply like co-existing with foreigners that you never quite understand.  With autism, this is a difficult goal.

Being different as an adult with autism can be beautiful.  It can give you a chance to innovate, create, break barriers and still be accepted with a meaningful and fulfilling life.  But when you are a child, struggling to understand the world, to make friends, to find self confidence and discover who you are, being different is more difficult and more stressful.  I want to do everything I can as a parent to erase those difficulties as my child grows.  Sometimes, I know I will be able to help.  Sometimes I will have to stand back, release control and just let it happen.

Once I’ve accepted that, maybe I can sit back and relax when my son says “viper” is his favorite color.  Maybe I can just let my perfect little cherry alone to experience the world as it comes.  But honestly, sitting back and letting life happen for him, is the hardest part.  How is it for you?

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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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19 Responses to Participation

  1. Fi (Wonderfully Wired Mum) says:

    Oh yes! Why do *I* keep sticking MY cherry in a pickle jar?
    You’ve given me some amazing food for thought here.

    I too have felt ALL of these emotions on this roller coaster that you just described *sigh* .
    I also find it had to sit back and just let things take their own course. I’m always in super vigilant mode trying to alter his surroundings.
    And for what it’s worth….I think “Viper” would be a really cool colour 🙂

    • solodialogue says:

      Haha Fiona! I did not know how else to describe it!

      It is difficult to sit back without that tense feeling isn’t it? Glad to know I’m not alone. And, thanks, I’m sure viper would be an interesting color too! 🙂

  2. Melody~ says:

    Honey, your vigialance is what got him the help and services he needs to be able to learn how to integrate. He may not ever “blend” but to be a part of thetrail mix can be even better. You are doing everything perfect! Tell yourself that 10X a day.

  3. I have to agree with you, Karen. When Little Miss is with a group of her peers, I am always on the edge… always waiting for her to do something that requires me to apologize for her, drag her away, put all the toys aside… what have you.

    When we were going to Gymboree, I studied her for her differences. Her classmates would follow the teacher’s prompts and she would follow her classmates, collecting and hoarding all the toys/props/etc. There was almost always a point where I would have to collect all the discarded props and put them back in the teacher’s cabinet — just so I could try to get Little Miss to join the class.

    I don’t know what we are supposed to do with them, Karen. I wish I did. I love her the way she is yet I want so desperately for her to fit in. I want to relax with the other moms at Gymboree and talk about who’s having a clothing sale or what I’m planning on planting in the garden. But I know that without me watching her, Little Miss is more likely to drift apart from the class and miss the wonderful opportunity for socialization.

    All I can say is that I feel for you. I know where you are right now. I hope things will get better with time for both of us.

    • solodialogue says:

      You have said it so well, Karla. It is because we love them that we so desperately want them to fit in. To sit back and relax. Time is always a bit of magic. I hope it will serve us well.

  4. Flannery says:

    Have you ever sat and watched those pickles? They are all pretty unusual in their own way. But I do understand how you feel, I also watch my child nervously and feel every oddity to my bone. But we can’t stop, because our cherries will be out there in the pickle world someday, so we have to expose them and get them ready.

    Now I’m hungry…

    • solodialogue says:

      I was really hesitant to use that analogy. Now I know why. 😛 Thanks, Flannery for empathizing – it actually really helps to know that other moms are feeling the same way.

  5. Teresa says:

    We all worry about how our children will be accepted in the public. My experience has taught me to keep trying. Each day, each opportunity is a chance for your children to practice appropriate behavior. I have a friend whose daughter has not been allowed to go shopping, to the library, etc. She is not well behaved. Unfortunately, she is now 16 and her misbehavior is no longer accepted by the public. People avert their eyes. What I find interesting is that in the school setting she generally behaves when they go to the store or other field trip. She understands that poor behavior is not allowed during school but is tolerated with the parents. So, yes, sometimes our children will do things that embarrass us but we need to keep trying and hope that through our consistency we will raise adults who can act appropriately.

    • solodialogue says:

      Beautifully said, Teresa. What great advice! They will work us if they know the buttons can be pushed effectively. So we keep on for love of our children. Thank you.

  6. I love my son to death, and think he’s the sweetest, funniest kid in the whole world. But I can’t stand being around other kids. It’s just too hard.

    That being said, this looks like a really fun class. Good mix of social time with NT peers and active games that he probably enjoys.

  7. Melissa says:

    Right there with you. For all the world, I wouldn’t change the who she is. I love who she is and how she sees the world. But when we’re out, I become hypervigilant, to the extent that it inhibits my enjoyment of HER enjoyment. It’s often a tightrope of “sit back and enjoy” or “object lesson”.

    • solodialogue says:

      Thanks Melissa for giving me your perspective as well! It is comforting to know we are all in the same “stress boat” when it comes to watching that interaction. I can feel like you are all there supporting me the next time we do it! And I hope you all get that same comfort hearing it here too! I definitely understand where you are coming from! 🙂

  8. Meg says:

    Karen – the descriptions and the pictures are so graphic, clear, and and colorful. What a fun class. I want to be a student in that class. You really have come full circle on how much you love your son, and how heartbreaking it can be to expect something, and not have it come through, even though you know it is not going to come through. It seems like “Why am I banging my head against this wall again?” and “I know why I am banging my head against this wall, and it is because I love himmm, and that is why I am going to be banging my head against this very wall again tomorrow.” Hmmmm. What can I offer here. Oh, the quote from my Yogakids group: “Worrying will not empty tomorrow of its trouble. It will drain and empty today of its strength. Breathe in. Breathe out. Remember who you truly are…a magnificent present.” Okay, that’ll do, eh?

  9. Oh I’m so glad this one wasn’t about poop 🙂 haha!

    My Wee One has severe anxiety that we’ve been coping with since she was a baby. No, she’s not autistic but in a lot of ways I see her being the Cherry in the pickle jar too (love that!) when other kids are going crazy and having fun, and she’s standing there with her hands over her ears and a panicked look on her face. It takes her forever to get into something that makes her nervous, and new adults are terrifying for her. It’s miles better than it was, but we still have a long row to hoe with her, and I suspect she’ll always be “the shy one”. She is certainly the clingy one of my two! She has fallen a bit behind in school, too, and we’ve just started her with a private tutor. I think it will help her immensely.

    And like you, I wouldn’t trade her for the world 🙂

    • solodialogue says:

      Thanks for popping by Jenn! When you say that she stands with her hands over her ears, the first thing that comes to my mind is that she might have a sensory processing disorder (SPD). I certainly don’t mean to butt in and what do I know? All I do know is a few mothers of little girls who do not have autism but do have SPD. If you wander around the SPD blogger website on my blogroll under “All About SPD”, you will know if it fits your daughter. You may want to slap me for saying this but I’d rather risk that for the merest possibility that any knowledge of SPD might help you and her. I understand your love for her. Here is an amusing little tale – can you relate? http://bit.ly/jShpFb Give it a read. It can’t hurt. Then come back and tell me to MYOB. 🙂

  10. eof737 says:

    You are human, and as a parent, you want your child to have the answers. He did say blue with some prompting…
    Another thing is that there are other equally anxious parents in the room and all of you want your children to shine…. He’s doing well Karen and so are you. 🙂
    Eliz

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