Weekend Archives: We Can’t Always Make it Better.

[This post was first published on March 8, 2011.  It still gets to me just the same.  We don’t have these scenarios much anymore.  A sign of how far we’ve come.  Yet, I still don’t know what happens to bring them on.  I may never know. ]

As parents, we all understand the cry of a child who suffers pain.  Sometimes, the child has fallen down with a bump or bruise.  We kiss it and make it better. Sometimes, it’s a bloody nose or a skinned knee, a cold or a fever.  We use Band-Aids and cough syrup, Tylenol and chicken soup.  We make it better.  If we can’t make it better, we go to the doctor and the doctor makes it better.  The child stops crying, begins to play and all is well again.

Last night, my son cried.  He began to cry sitting in the back seat of the car while I was driving on the freeway ride home.  It was a soft crying at first, tears welling up, and then streaming down his face.  Then, the wailing began. The “ah hhuh-huhh”.  The sniffling and running of the nose.  Of course, I had no tissue to hand to him.  I found a napkin on the seat beside me and passed it back.

He took it and gently wiped his eyes and nose but the crying continued.  This is not the cry of a bump, bruise or skinned knee.  This is different.  It is the cry of a child confused and overwhelmed by autism.  A child who cannot tell you why.  A small person who tries to get words out and the words make no sense.  He knows it.  And it breaks my heart every single time it happens.

I let him cry for the rest of the ride home, checking the rear view mirror the whole way. I know he cannot tell me and yet I always ask.  “What’s wrong?” “Why are you sad?”

He tries to answer.  The first two words come out. I know he is trying.  The words are disjointed.  Scary.  It is almost like a person who has suferred a stroke and who cannot say it, but knows what he means to say.  After first words and half of a third, my son is lost.  He struggles, cannot do it and cries louder.

I tell him, it’s okay.  I know he’s sad.  I know he’s trying to find the words to express himself and he cannot.

Then the orders began.  Normally, I try to ignore them but because I could not jump out of the car while driving, I relented, probably not the best choice but the truth.  I think he may do this to help him regain control of himself in times he feels so out of control.  “Mommy, draw the letter ‘O’!” he pleads softly between cries.  I draw the letter ‘O‘ in the air with my finger.  “Draw the letter V!” he cries, trying to catch his breath.  I comply.  His crying subsides and then begins in full again.

“Mommy, call the octopus!”  he yells.  I think about this one.  Then, I grab his Winnie the Pooh phone sitting next to me.  He had abandoned the purple phone earlier in the ride in favor of the iPad.

“Hello, Oswald?”  I asked holding the tiny purple phone handle.  (Oswald is a cartoon octopus).

“Hello Mommy and Tootles,” I said, in my best Oswald voice.

“Oswald, are you eating ice cream?”  I asked playing myself.

“Why, yes, Mommy, Swizzleberry Swirl, as a matter of fact.”  Oswald answers.

Glancing in the rear view mirror, I checked to see if this was soothing or not.  He was sobbing instead of crying now.  Catching his breath.

“Tell Tootles I love him,”  I said in my Oswald voice.

“Oswald loves you baby,” I told him and hung up the purple phone.  It did not help.  The crying began, again in a huge wave.  In between the wails and the sniffing, I heard him ask for a blue car.

We pulled up to the house.  I got out and unlocked the front door.  He continued crying from the back seat.  I walked back to the car, got in the back seat, unbuckled his seat belt and gave him some deep hugs and kisses, patting his back while he sobbed into my shoulder, holding me.  He does not want to budge from my arms.  After a while, I carry all 52 pounds of him inside.  He continues to cry.

He runs to a closet and grabs his blue car.  He stares at the wheels.  He spins them.  He cries.  He looks at the headlights.  He sobs.  He walks out of the closet and slowly makes his way to the bedroom.  He lays down on the bed.  I wipe his face.

I get out the OT brush.  While I brush him, he points to the headlights and asks me what they are, through his tears.  He knows the answer.   I know he knows.  “What are they?”  I ask back.  “Headlights,” he answers.  “What color are they?”  he asks again.  I ask it back.  “White,” he answers.  He looked at the wheels again.  He alternates between the headlights and the wheels.  Slowly, as I complete the joint compressions taught in OT, his crying stops.  The whole thing lasts about 45 minutes.  We spend some time rocking in a chair, the gentle motion and hugs soothing him, he stares into space for quite some time.  I kiss his forehead and run my fingers through his soft hair.  The self talk begins softly.  Back to “normal.”

The difference from any other parent?  This is not just a sad child.  I get the tummy aches, the flu, the bruises and the skinned knees too.   Just because my son has autism does not mean he does not get all these other things. I recognize the difference between those cries and this one.

This is a child who cannot express what is happening inside himself.  He is trapped in there.  He wants to tell me.  The words fail and he is left alone, inside himself.  I am right there and, in many ways, I might as well be a hundred miles away, because he cannot tell me what he feels and what he needs.

The desperation in his voice and his tiny face show me how hurt he is.  And all I want to do is make it better, but I can’t.  I can hold him and wipe away his tears but I cannot fix what is inside.  These are times when autism hurts.

This is the story you don’t hear about at the school district meetings, at therapies, at the pediatrician’s office.  This is a short story from the battlefield where autism takes place.  I don’t know when or where the enemy will strike or when my son will go down.  Sometimes, it feels like we walk through a minefield just to get through the day.  Nothing should hurt the innocence of childhood like that.

And, just like that, the enemy retreats.  All is quiet on our western front.  Songs are sung.  Laughs are heard.  Hugs are given.  But we have not won.  We only try to ease the fear of the unknown.  As parents, we do our best to soothe and shield and protect.  And that is a small part of why, as ASD parents, each and every one of us is a warrior of sorts, with a little scar that serves as our silent unity.

After the storm...

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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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26 Responses to Weekend Archives: We Can’t Always Make it Better.

  1. Julie says:

    Oh my, your sweet boy! Dylan gets that but it’s his speech delay. He just gets so frustrated. You son is lucky to have such an intuiative Mom. You did a great job!

    • solodialogue says:

      Thanks Julie! I hesitated on whether to post this but felt that it was so intense and meaningful in the moment that it deserved saying. I know I have it a lot easier than many families and I am grateful but I just wanted to give a glimpse inside something else today.

  2. bbsmum says:

    I know. I know. We go to those awful, dark places too. And then we come out. And I have no idea what caused the going in, or the coming out. And BB can’t begin to find the words to tell me. ((hugs))

  3. Lizbeth says:

    It’s so hard to see them go into themselves and you have no idea why…you did great! Never under-estimate your intuition.
    A week or so ago Alex was sick and he didn’t have the words to tell me what hurt, so I had to guess. I’ve done it before so everything went as well as could be….Fast forward to yesterday and I was at preschool with my daughter and one of the little girls comes up and tells Lizzy how she was sick, “yeah, my face hurt under my eyes, I was hot and…blah, blah.” She gave a perfect description of what Alex had…it was so weird to hear it being articulated.

    Anyway, you did great and I’m glad he’s on the mend.

    • solodialogue says:

      Thanks Lizbeth. It is really weird to hear other little kids articulate so clearly what’s wrong when our kids cannot. We all have ups and downs as moms and it’s good to be able to talk about both sometimes.

  4. Laura says:

    Stopping by from SITS. Thank you for this beautiful post. It actually made me cry, and I don’t cry easily. You sound like an amazing mother, and I was so inspired by how loving and patient you are with your son. I can’t imagine how frustrated your sweet little boy feels. It’s hard enough being a kid. Thanks for sharing.

    • solodialogue says:

      What a lovely comment. Thank you for stopping by. Things here are not always sad. But here I want to be able to talk about all of it and a little bit of the hard part was what you saw today.

  5. Four is hard, so hard. Before they can articulate is hard. But it will get easier, hon. ((hugs)). And I hope it’s not so scary for you then.

  6. spectrumdeb says:

    Crying with you. I applaud you for dragging out the helplessness and frustration you feel and shining a light in a dark corner of our travels on Planet Spectrum. We sure spend a lot of time trying to think positively, put a good spin on it, stay therapeutic. But it sometimes just plain sucks. Pass the kleenex.

  7. Nidia says:

    HUgs! Our poor babies and their frustrations! My daughter starts crying out of the blue too.. all I can do is hug and love her!

  8. Jen says:

    I have no words. Your story makes my heart ache because of the struggle, but I find such hope in your love, in your child’s desires to communicate, in the beginning, middle, and the end of this post.

    • solodialogue says:

      Thank you for coming her Jen. Now you must understand how I really feel it was a little to coincidental how I ended up at your blog on the rocking chair post. Interesting how that worked isn’t it?

  9. Penelope says:

    What a sweet boy, poor thing. You can’t always make it better, but you can make it as easy as you can for them (and help them help themselves)

    ~Penelope (I love to write about beauty tips!)

  10. eof737 says:

    It is a mighty battle and I applaud your effort through it all. You are right, we can’t always make it better and sometimes there are no answers, no explanations. I feel the pain and all I can say Karen is hold on … with both hands. Sending you and your son soothing hugs.
    Finally catching up… Trying to shake a cold and get some rest.
    Elizabeth

  11. Uncle Marty's Cohort says:

    You did make it better, with your patience, empathy and understanding.

  12. Nancy says:

    The turn around is so swift and it takes a tole on our emotions and on our hearts. Here’s to the beautiful moments. May they always outweigh these moments of pain. ❤

  13. Kelly says:

    Honestly, Karen, I am in awe of you. The way you handled that situation brings tears to my eyes. You distracted, gave proprioceptive feedback, patience and love. All things that, logically, have been taught to us. Your execution, though, was probably the best thing about the situation. This was probably textbook behavior from you. I want to print this out and tape it to my fridge to remind myself of this beautiful interraction.

    This is inspiring stuff here, Lady.

  14. eof737 says:

    Yes, I remember this one well… Hang on! 🙂

  15. Your words took me right back to one of those days at our house. Sometimes it’s hours before we can calm our youngest son, and he doesn’t always want us to do the brushing and joint compressions. He prefers to be swaddled. It was hard enough to swaddle the boys as babies, but to swaddle a 5yo is even harder. Even thought these kind of days are fewer for us, it’s a good reminder that they still occur, and we never know when as we go through the school transition process.

  16. Hi, I just posted a cartoon on crying and autism. My daughter is 4 and diagnosed and we go through this all the time 🙂 Sometimes we know why, many times its hard to figure out. I make these toons… its kind of cathartic. Must smile when we aren’t crying 🙂 Here they are – http://growingupwithautism.com/

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