1000 Pictures.

Recently, I revisted an old YouTube posting of a 20-20 story about Carly Fleischmann.

I was struck by these words:

Our brains are wired differently.  We take in many sounds and conversations at once.  I take over a 1000 pictures of a person’s face when I look at them.  That’s why we have a hard time looking at people.”    (It’s about 7:40 into the clip)

And then Saturday happened.

It all started out rather fluidly.  My son and his dad hang out together while I attend my weekly Weight Watchers meeting.  Then, together as a family, we shop, play and go home.  A routine Saturday.

Only it wasn’t.

It was St. Patrick’s Day.  And about the fifth day in a row of nonstop rain.  The mall was packed with people.  Just outside my usual coffee shop, there was a yo-yo tournament going on with, at least, 50 kids and adults.  The whole first floor of Nordstrom, where we normally enter the mall was under renovation.  Everything was out of place.  Out of place and crowded.  The perfect recipe.

Kinda like this but double the people!

The first signs of the storm came when my son asked his dad for a toy and his dad told him, “Maybe, for your birthday,”  This happened in the store holding the yo-yo tournament.  My son began yelling, “HAPPY BIRTHDAY!”  Over and over.

Yet, his dad took him to the Apple Store while I was waiting in a long line for tea.  On the weekend of the new iPad debut.  Yes.  I found them, past the throngs of people, deep inside the store, where my son was playing at a display computer for children.  He was in the process of being pried away, again, by his father, from a “Math Blaster” game upon my arrival.

I was feeling the way I used to, two years ago.  Before ABA, medications or help.  It’s hard to explain.  The best way to put it is like that sharp, sudden, panic-stricken, feeling in your gut when you have lost control, right before a crash.

Still, there was no meltdown.  But, like an animal before a storm, I knew it was brewing.  And then, my son asked for “Go Toys”, a local toy store, that had recently relocated within the mall.  Again, disruption to the normal routine.  We took him.  Inside, he saw a toy car.  One that used to be available in both black and blue.  There were only blue ones inside the store.

There was a black one in the window.  I took him outside to see it.  Lots of people walking by.  He saw it and wanted to go back in and touch it but it was in the display window, inaccessible to him.

And that was it.

Meltdown.

Crying.  Yelling.  Shouting colors.  Hundreds of people everywhere.

I had bought him a cookie.  I remembered being taught in ABA to do “compliance instructions” coupled with rewards for ‘compliance’.  The problem was that he knew it too. He began issuing his own compliance orders to himself, “Touch head,” “Touch nose,”  and then following through.  It was almost like self-punishment.  He would yell the instruction, through tears, and then harshly slap his head or his nose.

I stopped that.  Instead, I gave him bites of the cookie as we walked back toward the car.  I hugged him.  I told him I knew there were too many people and it would be okay.  I squeezed his hand.  I took him on a roundabout walk to the car to avoid people and crowds.

The tears and yelling came in waves. He screamed to wipe his tears, i.e., “clean it!”  The screaming, the crying gained strength and faded.  It was my job to remain calm although I was not.  Inside the car, he asked for a “bottle”.  He meant a baby bottle of baby formula.  You see, we used to give him bottles up until he was almost three years old to calm him down from a meltdown, pre-diagnosis.  Pre-knowing what we were doing or what was going on.  (Enfamil, people— please!)

Yes.  It was that bad.  Inside the car,  I put on his latest favorite show, Team Umizoomi.  They were trying to determine which part of a pattern (bird, dog, bird, dog, bird, bird) was wrong.  As the pattern was recited, through his sobbing and screaming, he yelled, “GREEN! YELLOW! GREEN! YELLOW! GREEN!  GREEN!”  For each pattern, he was replacing the object words with colors.

Is this what he sees?

We sat in the car until he calmed down.  We tried to go in to another store, just he and I.  When his dad walked in, again, meltdown.  Dad ended up carrying him out to the car from this one.

What was the antecedent?  Was it the crowd?  Was it processing hundreds of faces?  Was it his dad?  The weather?

I have no idea.  He cannot tell me.  I asked him if it was too many people. “Yes.”

I don’t know if that’s true, or he simply could not bear to (or have the words to) discuss whatever it was.  We went home, and 45 minutes later, he was bawling in my arms, on the floor, me stroking his head, wiping his tears, hugging, kissing, and comforting him.

He was pressing his hand into the carpet.  He said, “Band-aid”  I looked at his hand and he had a tiny scrape by his wrist.  We got it band-aided and went out again, just the two of us, and had a quiet time without incident.

The evening was filled with his ear piercing, screams of harsh laughter, mean-spirited, throwing of toys, and knocking down a marble racer it took me an hour to build.  Two time outs for screaming and I put him to bed.

I can hear the rain outside the window as a write it all down.  This is the child who got up in front of a crowd of 200+ people and recited his line for the Christmas play and was proud.  The child that plays in Dave & Busters with arcade games blasting as loud as a rock concert, without a care in the world, who Christmas shopped with no problems.  Why today?

Was it really the crowds?  Was it the combo of renovation, moved stores and crowds?  Is he taking 1000s of pictures in his mind as he sees new people and changed objects?  Was it sensory overload?  His dad?  The rain?  The tiny scrape to his wrist? How will I ever help him cope if I don’t know what we’re coping with?

I cannot make it better.  I can only try to comfort him.  And that burns a hole through me that I suspect will, simply, just turn into another scar, in our life with autism.

After a rough day...

The song “If”  stuck in my head in association with the 1000 pictures.  If you listen to the words, you may see a new meaning in relation to being a parent in an autistic world (forget Helen of Troy…)

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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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25 Responses to 1000 Pictures.

  1. kcunning says:

    That sounds like a horrible day, and like so many of the ones I had 😦 That’s part of the reason why I started doing all my shopping online with Jake. He was just too unpredictable. Even the evening nastiness sounds like him. After a melt down, I wouldn’t get Jake back for a good 24 hours.

    I had to finally institute a ‘done’ rule: once he threw a fit, we were done. We went home, and the evening plans were usually canned. He’d gotten himself into some sort of feedback loop, and needed time to get himself out of it.

    • solodialogue says:

      Thanks, Katie. Sometimes it just feels better to know I’m not alone. It is scary though the depth of this one. We have been on such a good streak that this long, drawn out day seemed like falling down a cliff. I hate canning the plans for the rest of the day! I did ask him whether he wanted to try again before we went out and he did, so that’s why we made a second run at it. He asked for the do-over. I’m on pins and needles for the next few days while we see if we get back to our version of “normal.”

  2. Mom2MissK says:

    I think all of us parents know that moment before the storm so well — but you put it into words so perfectly — you always do.

    I’m sorry for such a rough outing and I hate that this happened to you guys after things have been going so well. Hugs for all three of you (I’m sure dad needs one too at this point).

  3. Kelly Hafer says:

    Like Karla said, you nailed this. The feeling of the impending storm, the dread, the knowledge that it is coming and the current tranquility is on its way out. Oh, God. I dread these now like never before. Since the introduction of Depakote, we have not had a single meltdown – 6 weeks meltdown free! But, I know, it isn’t gone forever. Ted isn’t “cured” of these, it’s all chemically controlled, not Ted controlled.

    On that note, and I’m sure you know this, keep track now because you may need to redo bloodwork and see if you are out of the therapeutic range and up the dose. My psych warned that this *could* happen. Just a friendly reminder. I know you are on top of all this stuff.

    Sending you and Tootles BIG cyber hugs and hope for a calm to reign once more. (((HUGS)))

    • solodialogue says:

      Oh Kelly, that is truly valuable advice! As soon as I read what you wrote, I posted an email to our neurologist and tried to get some feedback. The Toots did just have his blood work done about a week ago and it showed him right in the mid-range for the meds, so I’m not sure what happened. This was a bad and a long one. It just certainly puts me in my place. No matter how much progress we make, the nasty parts of autism are still rearing their ugly heads to assure I know they are still there… 😦

  4. blogginglily says:

    Meltdowns are so rough. He must have really been having a tough time keeping it all under control in the face of all the chaos. Glad you were able to ride out the storm.

    • solodialogue says:

      You know, I try to let him express what he wants. He still isn’t able to communicate it fully. I should know that by now and react faster to those dark clouds when I see them coming.

  5. Lisa says:

    Sounds like a really rough outing. I applaud you for remaining outwardly calm for Tootles. That can be one of the biggest challenges for me when Tate begins a meltdown… I hope the next one is better…hugs for you all.

    • solodialogue says:

      Yeah, it’s fun, eh? Calm on the exterior when you aren’t on the inside. That just can’t be healthy for us but there we go, being all “parenty” and everything… Thanks for the hugs.

  6. It could be that there were too many people, it could be that what came next wasn’t predictable, it could be lots of things. I know that sometimes we keep heading forward when really we need to step back. I have been there with the meltdowns in the mall. You will figure it out, think about temperament and sensory issues as you debrief yourself. You may find your answer before the next trip to the mall and you won’t have another meltdown. Good luck, I am sorry you and your guy had such a rough time of it.

    • solodialogue says:

      Thank you Lori. I wish he could just tell me, but that’s just it, isn’t it? He can’t. The more the communication block exists, the harsher the reaction. I just want to tear down the wall and free him.

  7. Yeah, I have to echo everyone else and say well done for staying outwardly calm. I sometimes find that really difficult to do. If he’s getting too upset, I can get panicky. I’m sorry you guys had a rough time and hope it goes better next time. **hugs**

    • solodialogue says:

      Thank you. I’m hoping there will not be a “next” time like this one. I thought we had said our goodbyes to this. I just have to be there, and keep working to figure out what it is.

  8. Oh no. For what it’s worth, I think you did a great job of being calm and understanding. That alone can be so difficult when our babies are in the middle of a melt down.

  9. “I cannot make it better. I can only try to comfort him. And that burns a hole through me that I suspect will, simply, just turn into another scar, in our life with autism.” This line made me cry! So sorry. He is so blessed to have you. And his story will help many others. Hugs~ Love that song, too. ~ Sam

    • solodialogue says:

      Aww. You are so sweet. I’m glad you love the song! When I was finding it, Tootles actually came over and tried to sing with it. You know how you try to sing when you don’t know the words? So funny and adorable!

  10. Lana Rush says:

    “How will I ever help him cope if I don’t know what we’re coping with?” Truer words have never been spoken.
    My oldest daughter has Type 1 Diabetes (has had it since she was five so thirteen years now – and NO ONE in our family has it…) and someone once asked me to describe what it was like. I told them it was like studying as hard as you know how for a test, doing everything you can to learn the material and yet, you still fail.
    Autism is much the same way for me. I read, research, eliminate foods, try this, try that, test this, test that… and yet, so many times, even armed with all the knowledge I know have, I am still helpless in the face of a meltdown. I find myself doing what I would do with any child – comforting, hugging, holding, whispering in the ear, and the like, praying that the love I’m communicating is getting through.
    Sorry to be such a downer but this post just kind of breaks my heart…. Poor T – giving himself the commands is just killing me. 😦 I’m glad that day is OVER!

    • solodialogue says:

      Sadly, that is an extremely accurate analogy for me too. I study, research, “work in the lab” and still fail with the meltdown. The consistent advice I’m getting is to just chalk it up to one isolated, really bad day and let it go. But can we really ever let that kind of thing go? It’s quite frightening to see such a major backward step. I guess sometimes you need them, to go forward again, but it is hard to forget and hard not to worry about it for the future.

  11. jentroester says:

    Sometimes I think they just have rougher days. There are days when K seems like she can handle anything, then others where every.little.thing seems to grate at her and cause a meltdown. Like she is just uncomfortable in the world. We definitely abandon ship if we are out somewhere and she can’t take it anymore. I know there is really no coming back….

    • solodialogue says:

      I think you solved my puzzle with your post about Melatonin, without knowing it! I have only had my son on it for a week. It was a new med and I never even considered the possibility that it might cause any negative reaction of this magnitude on my son.

      This community of ASD parents is an amazing thing, Jen. I’m not giving him any tonight and seeing if he stops grinding his teeth again. If so, that would solve this mystery. Now, who’s on Conan tonight? Anyone? 😉

  12. eof737 says:

    There are good and bad days for all of us bu love prevails… All will be well K! 🙂

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