No. Please, You Keep the Change….

Change is not a happy word around our house.  It triggers bad reactions in my son.  And I don’t mean “tantrums”.  Tantrums are a normal part of childhood development and children grow out of them as they learn to speak and communicate.  My son does not speak and communicate like other children.  This is one part of his disability.  It results in events that are sometimes called “meltdowns”.

No one likes to see their child cry.  Like any kid, if my son is crying to get something (a toy or attention) or as manipulation (doesn’t want to do something), I recognize that and can deal with it.  If he cries from a skinned knee, it’s an easy fix.  In both those instances, I can see the cause.  I can put a band-aid on it.   And I know things will get better.

But, there is a different thing that happens with an autistic child that crying could never define.  It does not happen with other kids.  It’s not sobbing, pouting or a “tantrum.”  This event is a manifestation of frustration and fear.  He knows what he wants to say and cannot get the words out.   He has a non-verbal scream for help, and panic because of a lack of communication that very young children grow out of quickly. It is a heartbreaking event, wearing and draining.  In my son, these events are accompanied by desperate facial expressions manifesting his inability to tell me what is happening.  It’s very much like my son is trapped inside himself, scared, and can’t get out the words to tell me why.

During these times, I often do not understand why it’s happening and I can’t stop it.  I can’t see the boo-boo.  I have to let it run its course.  I try to hold him but sometimes, he pushes away.  It’s a nightmare.  You cannot look and see the bleeding. But his disability triggers the reaction. “Tantrum” carries with it a choice and the ability to use verbal communication in its place.  My son has no choices.   His meltdowns are a manifestation of a disability.  My son is not “being a bad boy”.

When they occur, these events can last anywhere from 5 minutes to 2 hours for us.  It happens anywhere and everywhere. When it is over, sometimes I can put the pieces together and figure out why.  Sometimes, I can’t.

What I have learned is that change is a huge trigger. The change does not have to be a big one.  Often, in fact, it’s something small.  Usually, it’s a sensory issue.  For us, it’s been an old toy he wants removed, the temperature of water, a sound, a light, a word, a phrase, an escalator, an elevator, the wrong pair of shoes, etc.  I could go on.

Recently, there was change to my son’s schedule. Preschool was added back in after a hiatus for therapy.  The therapy schedule itself changed but it was actually shortened.  I was wondering if these could be triggers for events that crept back into our lives after several months of absence.

We fight these events with information.  My son must know his schedule every day.  He follows rigid routines. He asks daily, “We’re going..?” and waits for me to fill in the blank. The more detailed I am, the less the stress, and, most times, a decrease in events.

So, when his emotional behavior spiked recently, I wasn’t sure the cause. All of a sudden, he was approaching me with the question, “What does the dinosaur say?”  From experience, I knew this was the “bait”.  If I answered, “Roar,” he would then repeat the word “Roar!”screaming it at me while looking directly at me, the desperate look, the tears,  tense body.

Knowing that I’m being notified we are on the precipice of a “meltdown”, I wonder why.  Is there something I can do to stop it? “No,” I answered, “I’m not saying it.” Didn’t matter.  Whatever triggered it had come on full force.  He answered his own question and he was on his way…

These events can be accompanied by him giving me a head “hug” like a wrestling hold.  He may wrap a leg around me or hold my face with his hands.  The decibel-level of his little voice is astoundingly high as I wait it out.

During this one, he was repeating “Roar!!” at max volume, tears and snot running down his face. He became his own self-contained, snot-producing, decibel-breaking powerhouse.  I held him.  I gave him tissues.  I gave him a tight hug.

When he was winding down, he said, “ Purple dinosaur”.  He has no purple dinosaur nor has he ever shown an interest in one.  He said, “I wanna build shapes.  What shape is it?” an activity that he had ignored for months. These were clues.  He made eye contact saying these things to me.  When I looked back at him, he seemed so desperate.  He was trying to tell me something but the words were his enemies.

I always fear there is something physically wrong during these times.  But we make it through each one, tired and drained.  I had no answers that night.  Sometimes, these things end and I do not know if I will ever have the answer.

The next morning, while my son was still sleeping and I was doing chores, I recognized a pattern.  Goading me into making a sound, “roar”, the color (purple), and the mention of shapes had all been brought up about a year ago when his nanny, who had watched him for a year and a half, abruptly left. Similarly, in the last week, one of his tutors had been removed from his case.  This was done because therapists sometimes switch out to assure the child’s compliance with new people. Even though I knew about the tutor switch, no one told my son.  He missed his last day with her because he was sick with a cold.  There were no goodbyes.

Recognizing this was the cause, I was able to work with the therapists to help my son deal with the trigger, the change.  It felt good to have that “Aha!” moment.  I found the right sized band-aid.  I was lucky this time.  I want to stay lucky.  I wish I could tell the world, “No, please, you keep the change.”  I can’t.  So, I told this story, instead.

Advertisements

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.
This entry was posted in Autism, Uncategorized and tagged . Bookmark the permalink.

5 Responses to No. Please, You Keep the Change….

  1. Beth says:

    As a mom to an 8yo girl with Asperger’s I can very much relate to this post. As I always say, during the meltdown or tantrum we are “riding out the storm”. Usually there isn’t much to be done. Lots of patience is required and attempts are redirecting our children.

    I also blog so let’s connect! Check out http://www.alittlebloomer.com

    Great post!
    Beth

    • solodialogue says:

      Beth – Redirecting has also been helpful but, you know how it is, when they are already “there”, redirecting is very tricky…and I love your blog!! Especially LB’s Daily Posts-so adorable!

      Karla – Thanks for the support! We both know how that lack of language becomes a barrier. I think everyone I’ve met through Twitter and this blog is a great parent but I LOVE that last sentence!!

  2. Oh, my. Big e-hugs for you both.

    Kaia has not been diagnosed with anything other than global delays (including a significant delay in language/communication), but I CAN sympathize with these moments. Yesterday morning, Kaia was really “off” and spent a lot of time having mini meltdowns and being VERY clingy. With her limited language, it is very difficult to tell what is going on with her and so frustrating as a parent to be unable to help.

    The important message in your story is that you WANT to help your son and that you love him and care about him deeply. And that you’re willing to take the time to figure out the riddle from the clues he gives you. That’s what makes the difference. That’s what makes you a great parent.

    Here’s hoping for a better day today!
    Karla (http://helloworlditskaia.blogspot.com/)

  3. Meg says:

    How wonderful for you to be so tuned in to his needs and finding the answers. A-ha moments are grand. I have two autistic students now. One was a handful of meltdowns up until fifth grade. He’s in eighth grade now and is a very gentle young man who is using his brilliance in math, and succeeding. The other is in seventh grade now, and we have gone through all the ups and downs of change, and, now that we are stable fixtures for him, we are seeing an all new side to him. I am wondering what gifts these autistic kids are here to bring us. Change is hard. We do need formal good-byes and hellos. Knowing a schedule is comforting…for everyone. Perhaps they are just calling us out on our own needs as well. One gift for sure is that no one knows when or for how long the meltdown will be, so he is definitely calling those surrounding him to BE in the moment. That may be the gift. I bet since your son has been in your life your wake up every morning thinking, what will today bring us…surely a surprise!! I hope you had a good day today.

    • solodialogue says:

      Meg, I love to read your comments because of your unique perspective as a teacher of children in Japan! Your wisdom and experience here is a gift to all who read here. I love the story of the 8th grader because you show me that, despite all these meltdowns, he is succeeding! My son’s gift seems to be in reading. He reads beyond his years. What I have learned when I sit down and talk to him about it is that he understands what he is reading. I think he is using these reading skills to achieve goals in playing video games. He reads the instructions, resets volume, saves changes backdrops and passes levels with ease. It’s an amazing thing to watch. And yes, I do wonder what the day will bring…Thanks, Meg.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s