The Puzzle.

The symbol for autism is a puzzle piece.  The symbol’s meaning?  That’s subject to interpretation.  There are a lot of different views. Some are here and here.

For me?  I look at that symbol and say, “I get it.”  Yep, I really get it.  In my own way.  What am I talking about?  Well, to me, that puzzle piece symbolizes that I have to piece together what is on my son’s mind because he has a hard time telling me.  Unless you’ve lived with someone with ASD, or who knows very little English and offers very little clues to what they are thinking, you really don’t know what I mean.

He could laugh and the room is silent.  He’s not looking at anything in particular, so I have no idea what is so funny.  He doesn’t actually tell me. Every communication he initiates, knowingly or not, is like that puzzle piece. If I don’t match the colors and interlock the pieces just right, the whole thing falls apart or I end up putting a piece where it doesn’t belong.

Today was a puzzle.  We went to a birthday party.  It was very special because my son really only knows two other little boys and this was one of them.  He is a very good, smart boy with wonderful parents.  I love this little boy’s mom.  She gets it too.

We’d never been to their house before.  We’ve never been to anyone’s house for a birthday party.  We’ve been to Chuck-E-Cheese for other parties, but those always, without fail, result in meltdowns, for obvious reasons.  This was different.

As this was something new, I tried to prepare him.  He listened.  For a couple days, he kept saying, “We’re going…..?” as a question.  He wanted me to fill in the blank with the answer.  I repeatedly told him we were going to E’s house for his birthday party.

When the day finally came, he repeated the “We’re going…?” and I repeated the answer.  As he took his morning bath, he began to cry.  “Towel.  Clean!”  he said.  He always immediately wants a towel to dry his tears.  I asked him if he was scared to go to E’s party and he softly responded, “Yes.”

Puzzle Piece No. 1.  I’m not sure we were actually communicating.  If we were, that’s phenomenal, even if he was scared.  The trouble is that I don’t know.  Often, he will say “yes” to just about anything.

Examples:

“T, is your hair purple?”  “Yes.”

“Do you have a pet rabbit?” “Yes.”

“What is it’s name?”  “Pokeman.”

So, as I said, I wasn’t sure since the correct answers were “no” and who’s Pokeman?

Later, he asked to watch “Blue’s Big Birthday”.  Amusing because he was, in effect, preparing himself for the party.  He asked to watch it in the car, but I was not as prepared as he was and had no DVD to offer.

We arrived and everyone was friendly and wonderful.  There really could not have been a nicer bunch of people with whom to share T’s first home birthday party experience.  All the children at the party were good.  All were indifferent to my son. My son, though?  He put on his “autism shield”.  He walked around the house.  Then, he headed into the birthday boy’s room where he promptly found a toy ATM and played by himself.  He continued to play by himself throughout the party.

This kinda sums it up...

He interacted only with me and the birthday boy’s 3 year old brother, just briefly.  The birthday boy’s dad had made a fantastic giant Angry Birds’ pig piñata and hung it from a gazebo in the backyard.  All the kids got turns at knocking it down.  My son?  Never lined up.  Walked right in the middle of other kids blindfolded with a large stick and saw no danger.

Kinda like this, only worse.

When the piñata finally broke open, he had no interest in bending over with the other kids and picking up the loot.  He stood there and twirled around, despite my prompts to get in there and get something.  A very sweet mom (who I also learned later was a teacher) scooped up a small couple handfuls and gave them to me for the little guy’s bag.  At that point, I swear I almost cried.  I felt so bad seeing the complete disconnect of my son with these nice children.

Puzzle Piece No. 2. – Was he understanding that he was having the disconnect or oblivious?  I’ve talked before about how he appears not to be listening and then shows me hours or days later that he heard every word.  So, the question was whether he knew he could not get into that group of kids and grab for candy and toys because that was sensory overload?  Or was it that he was sealed off and thinking about something else?

Sensory overload?

I want to say that he knew but sensory overload stopped him from getting into the group of kids.  He could not and cannot tell me if that was the case.  He cannot communicate with language that way.  And so my heart was heavy for him.

Inside, they all sat down for cake.  My little guy sat but kept trying to put his feet up.  I continually had to prompt him to keep his feet on the floor.  I wanted to help the other moms, but it was all I could do to keep the little guy seated, his hands off the toys of the other kids next to him and out of meltdown stage because he wanted the cake so badly.

While the other kids ate, my son struggled to hold the fork.  He could not scoop up the ice cream like all the other kids, so I had to feed him.  He enjoyed the cake and ice cream and no one made any remarks about his mom feeding him.  They were all preoccupied or too polite.

After they were eating, the birthday boy’s mom had prizes for the kids who guessed numbers or answered questions.  My son was lost.  He had no idea what was going on and he zoned out, getting up from his chair, playing with doorknobs and locks nearby.  Judging from his fidgeting, I knew he’d reached maximum capacity and we said our thank you and goodbyes.  The birthday boy hugged my son, which was very sweet and we left.

Puzzle Piece No. 3:  When we got home?  He cried.  Spontaneously.  Without warning.  I was afraid it might be the party.  I asked, “Are you sad?” “Yes.”  “Why?”  “NO!  Clean, clean!”  “Are you sad that you did not talk to the other kids at the party?”  “Yes.”  “Clean! Clean!”  Then he says to me, “Does your tummy hurt?”  I ask if he wants to use the bathroom.  No.  Then, about an hour later, he runs to the bathroom and is a bit sick.

After all that, I asked, “Did you have fun at E’s birthday party?”  The answer?  “Yes.”

Puzzle, yes.  I get it.

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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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23 Responses to The Puzzle.

  1. Wow. That is an amazing story, Karen.

    Truth be told, I continue to read your blog because I feel such a connection with you and T — and after reading this, I REALLY feel that connection. Granted, Little Miss does not have as much difficulty in dealing/communicating with others as T does, but this experience you’ve written about? It surprises me how much it describes some of the exact. same. things I have seen with Little Miss.

    — Ignoring her peers? Totally.
    — The part about needing help with feeding? We’re getting better, but so totally yes.
    — Walking into the middle of a dangerous game? She just did it — YESTERDAY.
    — Having no idea whether she enjoyed an experience? Daily.

    I used to be a big Star Trek fan and I *WISH* there was a universal translator for our kids. But until someone figures that out, I guess we need to just keep plugging away at that puzzle. Hugs for you and T!

    • Karen V. says:

      Isn’t it strange how someone who can relate to how you feel makes you feel better? Cuz, that’s what you do, Karla! Thank you. It’s funny how you mention the “universal translator” – I’m a big nerdy fan of Hitchhiker’s Guide to the Galaxy (Douglas Adams) and in it, when they travel they stick a Babel fish in their ear which instantly translates any language – similar concept.

      I think our kids challenge us every day to hone our instincts.

  2. Aspie Mom says:

    I so admire your little guy. He is so tolerant of very hard things! And I love the way he tells you what he needs. He doesn’t “report” on what is happening with him, but he clearly expresses some things that HE feels he needs.
    I’ll tell you what the puzzle is for me. What are the things that drive me that NT’s don’t have, and think are so odd? One is ideas, especially how things work. I MUST know. Another is ever-present anxiety. Another is inability to interrupt my behavior. Another is to concentrate very deeply at least once a day, or if I can, for hours a day, thinking.
    I wonder now, at the age of 60, if the biggest is the need to connect to or please people.
    When I am at a party I see new furniture, a new house, new gadgets that I want to understand, new foods that I want to try, a yawning valley of time when I don’t know what to expect and have no control, my own friend and other people I may know there (usually 2-3). Then as a background I see a sea of anxiety-inducing faces. I can’t tell the difference between them, I won’t remember their names, I don’t know what to say to them, if I try to talk to them I talk too long and they get bored, if I see them again they will be insulted I don’t remember them. Certain kinds of people I can hardly talk to without insulting them, or getting laughed at.
    Do you feel a field of potential, the happy thought of lots of people you can “connect” with? Do you alter your behavior easily because you want to make all these people like you? Do you feel happy?
    It’s definitely a puzzle!

    • solodialogue says:

      You really make me think. How important is it to connect with people in the scheme of things? Well, I guess without the ability to connect we limit our field of prospective careers… maybe. What are the fields that require those connections? I guess really the only ones that strongly come to mind are people trying to sell something and people who work with children. In law and in medicine, I’ve seen plenty of successful people who have no connections to others. In the long run, will the lack of participation in a birthday party hamper his success in life? Probably not. Still, I have to consider the psychological aspect of the difficulty the anxiety imposes on his will and ability to push himself into a social situation as that will impact his options and his future.

      I often feel just like you at parties. I won’t remember names. I don’t know what to say but I will push myself to socialize. Then, I push myself not to review my ability to socialize… I hold my breath and get through – sometimes it’s good – sometimes not. Happy? Sometimes. You have great points. 🙂

      • Aspie Mom says:

        Sorry I was unclear. I think with your great parenting your son will connect with people just fine. Most of us do. And for me, children are much easier to connect with than adults. They are like me – WYSIWYG.
        As you say, there are plenty of people who can’t connect; there are others who just aren’t as motivated to do so as you are.
        So, since your son has you, you will teach him all those strategies and insist he attend, and you will put him in those situations, because you can make friends in the mom world. With Garcia-Winner type interventions, he will have those resources when he is ready to use them.
        While I consider myself extremely successful, he will be able to do much more than I can because he has such great teachers!

      • solodialogue says:

        Two terms I did not understand here were WYSIWYG (what you se is what you get!) and “Garcia Winner” interventions! You are truly a goldmine of knowledge to me! I learned something new today with reference to Michelle Garcia Winner’s ILAUGH model – I have to read it but it is good to learn about everything out there regardless of what I end up thinking of it…(I can’t say until I have read (and I am excited to do so!) Thank you for all your insights!

  3. The puzzle piece thing used to bug me too, but I’m getting over it. And after reading this, I have to say that it is an a appropriate symbol for autism.

    I’m sorry the party was so hard for your son and you too. I can totally relate after seeing A. scream his way through Sunday School yesterday- it’s incredibly hard to see how different our boys are from their peers. I guess as long as we keep trying these things it’s bound to get better eventually, right? Hugs to you!

    • solodialogue says:

      Thanks for the hugs! Yes, I think you are right about continuing to try these things until they desensitize and work their way through them. Yes, I know you know what I mean about that sinking feeling with the “peers”. I just hate the scars…

  4. ElizOF says:

    Oh sweetheart… I feel for both of you… But maybe he was oblivious to the goings on and the comment above might be a good way to build his comfort level at such events… virtual hugs to all of you …

  5. ElizOF says:

    Finally catching up again… where did the time go? Phew! 🙂

  6. Lizbeth says:

    And that is why we don’t go to birthday parties…Seriously, I bet $100 Tootles understood every word you were saying and everything going on. I’ve found Alex would shut off his mind, for a lack of a better way to describe it, when things were too stimulating. He’d still process but stop his communicating. He’d later catch up with things and meltdown later, if he hadn’t already blown a fuse. Hang in there. Sometimes seeing NT’s the same age is depressing. You really get to see how regular boys are–makes me love mine even more. But I’d be lying if a part of me didn’t wonder what it was like.

    • solodialogue says:

      I’m thinking that would be $100 lost on my part. Alex sounds so much like Tootles. I think he was having a delayed mini-melt of sorts or simply was sad that he could not do what the other children were doing. 😦 Your right that it can be depressing but in the end? I love my boy just the way he is – just like you do yours. And it’s that kind of understanding among us that binds us together too. I’m grateful for you! 🙂

  7. I, like Lizbeth, have been known to avoid birthday parties. I feel like we go because *I* want to fulfill some part of his childhood I think he is missing out on- but he doesn’t seem to really enjoy them…so who am I doing it for? Me or him?

    I love the way you write about your little man and I always feel like I’m right there. I always feel like I want him to be best friends with Brian too 🙂 Well you know…as close to best friends as two spectrummy kids can get 😉

  8. Aspie Mom says:

    blog about accommodations for GYN procedures. might give insight into how to make other procedures more palatable.

    http://nakedbrainink.com/2916/

  9. Amanda says:

    Been there done that. He doesn’t remember of course…but mama does. It gets much much better but never really goes away. Once in a while I see something that brings it all back. A few months ago I saw a 3 year old who had the same name as my son, doing and saying all those things I desperately hoped for my son to do at that age. I got over it quickly but still, it stings.

    Even though I definitely prefer him as he is and all that.

  10. Oh, parties. There are a few options that I can think of.
    1) If he doesn’t seem to be happy, and they are difficult for you- just don’t go. Avoid them. People will understand.
    2) Go anyway, and explain to the host that he needs to do his own thing. They’ll understand.
    3) Prepare for them. Host your own little parties, starting with just one guest and working your way up. Social stories are awesome (picture based for non-readers) and can give an anxious child some comfort in knowing what comes next. With practice, he’ll understand.
    4) Go. Leave present. Take goody bag, and run. They’ll understand.
    They all work at different times. And people *will* be understanding, I just said so!
    Sensory-wise there is a whole lot going on at a party, so even little seekers can get overloaded. Add to that a host of unfamiliar faces, and it is overwhelming. It is the hardest challenge for our kids to be social with such demands on them. Personally, I think he did a great job taking himself out of a hectic environment, and finding a game that calmed him. I’ve seen worse at parties! 🙂

    • solodialogue says:

      What a lovely comment and great advice!! So lucky you left it here for everyone. Thank you! My favorites are 3 and 4. He loves parties in his own home beause when the sensory stuff gets too much – he’s got lots of stuff to self-soothe right at his fingertips. 🙂

  11. Jen says:

    My 5 year old son is the same way at parties. We have to go outside or in the basement when the “happy birthday” song is sung…WAY too stimulating. But we must have some cake afterward. He’s not interested in presents or games or the pinata either. He rode his bike in the garage for most of his own 5th birthday party. I feel really bad because I miss seeing the kids blow out the candles, and my 3 year old is usually right next to the birthday kid singing! I really don’t look forward to kid’s parties but most of my friends already know we won’t be around for the birthday song. It’s the school parties that I’m worried about. I’ll probably be the only parent there or avoid them altogether. It’s tough seeing your child in that environment when it’s supposed to be FUN!

    • solodialogue says:

      It is a tough environment that is supposed to be fun! Riding a bike in the garage for your 5th birthday could be really fun… it all depends on your perspective. I hope he enjoyed himself no matter what he did. Ahh, tradition. You know, we don’t have to sing that birthday song… Why do we all fall into that trap? Maybe try for no song next year. (hey- or better yet? Very short parties- like speed dating…lol!) Sorry, it’s late, my friend! 🙂

  12. Pingback: Social Awkwardness or Awkward, Socially? | Solodialogue

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