What's Wrong With Him - Answering the Tough Questions about my Autistic Son - Emily's Puzzle - emilyspuzzle.com
Autism

What’s Wrong With Him?

Answering the tough questions about my autistic son.

Sometimes I forget that my sons have autism, until other children their age come over to play.  Then I’m quickly and sometimes harshly reminded of their differences.

What's Wrong With Him - Answering the Tough Questions about my Autistic Son - Emily's Puzzle - emilyspuzzle.comLittle by little over the years our fenced in backyard has become somewhat of a sensory playground. It wasn’t intentional, it just sort of evolved that way. We have a tire swing just like the one Owen used in occupational therapy, a large trampoline, a wooden play-set with swings, a “tree house,” sandbox and water table. In the summer we set up the sprinkler near the trampoline so that it becomes like a slip-n-slide as well. A death trap for sure but hours of fun. My parents have been very generous in helping us create such a wonderful outdoor space for our boys. I often joke that our outdoor space costs more than our little home.

So it didn’t surprise me when the neighborhood kids took notice and eventually asked if they could come play.  When I was pregnant with Owen I would daydream about his friends coming over to our house to play and Owen going over to their houses. I have so many great memories of playing at friends houses when I was little that I looked forward to my children having the same experience. Later, when he was diagnosed with autism, that was one of many dreams that I thought would never come to fruition. Yet here I am, sitting in the backyard watching my boys and their new friends laughing and jumping on the trampoline.

What's Wrong With Him - Answering the Tough Questions about my Autistic Son - Emily's Puzzle - Owen's small smile.I really should be careful what I wish for because now every time we set foot outside, I hear the pitter-patter of flip flops coming down the road and two little girls yelling, “Can we come over and play?”  They are sweet girls but when I imagined having kids over I envisioned my kids playing happily with them.  I didn’t realize how much work goes into refereeing, answering endless questions about EVERYTHING and turn taking. Sweet cheese, doesn’t anybody know how to take turns anymore?!

However, as soon as Eli hears those flip flops he runs to the fence and starts yelling, “Hey friends, do you want to come play with me?”  Owen stands in the background with a small smile on his face.  When I ask him if he wants to play with his friends he says, “yeah” quietly with that same small smile. So I open the fence and let ‘em in.

Sometimes it’s just the two little girls and other times it’s the two little girls, their older brother, his friend and the little girl from further down the road. They multiply like rabbits.  Soon our backyard is filled with kids laughing and yelling “hey, that’s not fair” and “watch me!”

The differences between both of my boys is really apparent during these times.  Eli jumps right in, comfortable with the noise and the chaos.  He outwardly adores having people over and seems to get caught up in the chaos. Owen, on the other hand, stays more in the background. He appears happy to have them over as he watches them play.  Sometimes he’ll laugh happily at their antics and even join in on the trampoline or in the sandbox for a little while.  They both are playing so well with the other kids that I feel myself begin to relax.

I go inside for 10 minutes at a time, giving them their space but still watching from the window.  Once removed from the noise it’s much easier to take in the entire scene. I watch as Owen tries repeatedly to get the other kids’ attention but he doesn’t understand that he needs to speak up.  Instead he whispers and they don’t hear him. I watch his face fall after several failed attempts.  I watch him become moody and begin throwing sand until the girls are shouting for me to make him stop. His face crumples and he begins to cry. I run to him and ask him what’s wrong, knowing that he’s feeling frustrated and doesn’t have the words to answer. I’m flustered and don’t even know why I asked him.  My second rookie mistake is following that question up with another.  His system is already overloaded and here I am adding to his confusion. He starts repeating, “I don’t know” and “no fun” over and over again. Feeling frazzled, I grab his hand to pull him inside. He reacts angrily by running further into the yard and tearing his pants and underwear off. The other kids start asking, “What’s he doing?” “Why’s he doing that?”

Now I’m on sensory overload.  I want all of the kids out of my house and away from my son NOW.  I hate them. It’s not their fault. The kids are lined up, surprised looks on their faces as they watch the scene unfold. Except for Eli who is still bouncing on the trampoline completely unaware of everything that is going on around him. “That’s odd” I think to myself before turning back to Owen. I try to pick him up but he flails and starts screaming more. My heart hurts for him because I know he feels out of control and is aware of the looks from the other kids.

I tell the kids that they have to go home now. They begin to groan and complain before I yell, “YOU HAVE TO GO HOME! GET OUT NOW!” They look hurt as they scramble to the gate, staring at Owen as they walk by.  As the last kid leaves, I pick up Owen and carry him into the house, kicking and screaming at the top of his lungs. I feel a cry bubbling up out of me and I pray for strength to not lose it while my child needs me to be strong.

Once inside I try holding him as he fights against me. I’m out of practice.  He hasn’t had a meltdown like this in a long time. I’m fumbling around, unsure of myself, feeling inept and useless. I grab the remote as he knocks it out of my hand and screams “No!”  I pick it back up and turn the TV on anyway. It comes on and begins to work its magic by slowly pulling him out of his meltdown and drawing him in. His crying dulls and he allows me to hold him.  His breathing is hitched from crying so hard.  I hold him and rock him and take deep breaths myself.  I thank God that it’s over.  He feels heavy and limp in my arms.  He’s exhausted.  I’m exhausted.  Eli’s still jumping.  I feel numb.  I ask Owen if he wants some juice.  He doesn’t answer.  I get him juice anyway.  He takes it and drinks it without looking up, completely absorbed in his cartoon cocoon.

What's Wrong With Him - Answering the Tough Questions about my Autistic Son - Emily's Puzzle - emilyspuzzle.comThe irrational side of me wants to never let those kids come over again. THEY were being too noisy and caused his meltdown. THEY didn’t leave the moment I asked them too. THEY are too much work and mess. It’s so much nicer when it’s just me and the boys anyway.  Every fiber in my being wants to shelter Owen from the judging eyes of others, from the noise, chaos, and confusion of the world.  I want the world to conform to him instead of the other way around.  Deep down I know that the world doesn’t work that way and that by protecting him from life now will only make the lessons harder for him later. Lord give me the strength to walk through this with him.

A few days later we are outside and I hear the pitter-patter of flip flops coming closer.  My first reaction is to run back into the house but Eli hears it too and runs to the fence asking his friends if they want to come play.  I grudgingly agree but this time I set some rules. No screaming or fighting and when I say it’s time to go, there is to be no arguing with me. If the rules are broken then they will be asked to leave immediately.  Eyes wide, the girls nod their heads in consent.

What's Wrong With Him - Answering the Tough Questions about my Autistic Son - Emily's Puzzle - emilyspuzzle.comOwen seems happy to see them.  He has that far away look in his eyes and that small smile on his face.  The girls are holding up their end of the bargain beautifully.  I begin to relax as I watch them playing together.  One of the girls decides she wants to play house and asks Owen if he wants to be her baby.  Owen smiles and runs away.  She chases him and asks him over and over if he wants to play with her.  He laughs, mutters something unintelligible and runs away again.  This keeps up a little while longer before I interject, “Owen, your friend is asking you a question.  Do you want to play with her, yes or no?”  He says, “Yes” then brushes past her while laughing and looking over his shoulder.  I tell her that he wants her to chase him.  She yells, “No Owen, let’s play house.  Do you want to play house with me?”  By now, he’s on the tire swing and spinning happily.

I see the confusion on her face as she turns to me to ask how old he is. My stomach sinks because I’m pretty sure I know what’s coming next, I tell her that he’s five.  She then asks, “What’s wrong with him?”

There it is. The question I knew would come eventually but I had hoped and prayed not yet.  I felt protective of Owen but when I looked at her face I could see that her question was based completely out of curiosity.  She noticed that he was acting differently than other five year old’s she knows and she was curious.  I wasn’t prepared to answer such a direct question about his autism but it’s been important to me from the beginning to be open and honest about it with everyone, including curious little girls.

I say a quick prayer, take a deep breath and say, “He has autism. Do you know what that is?”  She shakes her head no.  Her sister, seeing the seriousness of our conversation stops playing and joins us. I tell them both, “Owen has autism. It means he is very smart. So smart that he’s constantly thinking about things all around him, so much so that he doesn’t always notice other people or hear what they are saying right away.”

“His type of autism also makes him really sensitive to sounds.  Noises that are tolerable to you and I are painfully loud to him. When there are a lot of kids over and everyone is screaming and yelling all that noise overwhelms him and makes him feel kind of sick inside and that’s why he cries sometimes.  He understands everything you say but he has a really hard time putting everything he wants to say into words so he gets frustrated. Imagine having your mouth taped shut and every time someone asks you a question, even though you know the answer you can’t talk because your mouth is taped shut.  That’s kind of what it’s like for Owen.”

The girls nod their heads knowingly.  One little girl says, “I know exactly what it’s like to have autism. I’m allergic to strawberries so I’m not allowed to eat anything with strawberries in it.”  I replied, “Okay, it’s kind of like that. The thing is most kids can eat strawberries without having an allergic reaction but when you eat strawberries you get really sick. That’s something different about you than other kids but it doesn’t mean that anything is wrong with you.  Well, Owen’s autism makes him think differently then a lot of other kids.  It doesn’t mean that there is anything wrong with him.  He’s a lot like you too.  He loves playing games on his Kindle, watching TV, and playing with his friends, just like you.”

Seeming satisfied with that explanation the girls start losing focus and go back to playing.  Facing my fears by having an honest conversation about my son’s autism with two eight year old girls somehow lessened them. Watching their reactions, seeing their understanding and complete acceptance of the situation gives me hope for Owen’s future.

Owen eventually made his way back over to the play-set. This time the girls spoke more quietly to him and when he didn’t answer they’d stand right in front of him and ask again which seemed to work better. Other than that they treated him the same as they always had. Apparently, they were okay with this kid with autism. My prayers are that the rest of the world will be just as accepting.What's Wrong With Him - Answering the Tough Questions about my Autistic Son - Emily's Puzzle - emilyspuzzle.com

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This article has 20 comments

  1. Nikki Crump

    I love your writing, it’s like I’m right there with you experiencing it. I can only imagine how you felt in those moments. It is so hard watching our children in social situations and all they want is to be accepted, and other’s don’t understand them. As a mother we feel the hurt for them. However, you handled the situation very well. It was great that you explained to the little girl so now hopefully when she goes out into the world she will be an understanding person.

    • Emily Eggleston

      Thanks Nikki! I hope and pray that’s how it’ll work. That each person’s lives my boys touch will learn from them and go on to teach others. Thanks so much for commenting.

    • stef

      I think it hard becuse some litte kids notice diff an other may not .
      I have autism severe sencorey Iusse an severe Ld when I was litte I was pretty much whatever hen it comes to playing with kids my mom say it was paral play an they were nice to me .but I had trouble with language .had the more typplical autism not the kind you hear much about now with litte kids being social an takle I had to learn all of thst an even now it still hard for me at times though I can do ok at times .but I think there do much more out there to kids get help early .my parents were my EI I had infantile autism it showing up early ..do you are doing good haveing nt kids come over that what I had to .i think it helps us

      • Emily Eggleston

        Thank you so much for your comment. Your encouraging words really mean a lot. I’m constantly wondering if I’m doing the right thing with my boys but just have to do my best and hope it/they turn out okay. My oldest son has classic autism and he struggles a lot socially and in many areas but he’s also extremely smart. My youngest son is more Asperger’s and at this point doesn’t have as many problems as his older brother. I’m so glad to hear that the kids were nice to you when you were young. You sound like you are doing really well now and that makes me so happy. Thanks again for your comment.

  2. Jennifer DeFrates/Heaven Not Harvard

    What brave, brutal, beautiful honesty! Sounds like you handled it well in the long run. A meltdown is so hard to process – even when it’s my neuro-typical child who just has an extra dose of drama! I feel all those same emotions just keeping her tantrum from ruining a playdate or excursion.

    In our home, our special needs kiddo is the oldest, so for us, it has been something the others grew up with, but there always came a day that we had to explain him to them. “What’s wrong with him?” is a hard question even from his own brother and sister when they realized that they are growing up past him, that his mind doesn’t process as quickly, that he will never have a typical adulthood. And you’re right, being honest and as clear as possible makes all the difference.

    • Emily Eggleston

      Thank you so much. I also know that feeling of watching your younger children pass your older child developmentally and its bittersweet. One one hand you’re happy for your younger child who is blossoming but your heart hurts watching your older child struggle. Life is hard and beautiful all at the same time. Thanks for commenting. 🙂

  3. SallyM

    I’m hoping I’ll get better at dealing with questions like this. Some days I can do ok and explain that he’s missing an enzyme so it means that his body is building up lots of gunk inside and that stops it working so well. Other times kids can be so brutally forthright that I react in child-mode myself…

    • Emily Eggleston

      Thank you for your comment. I think that’s an excellent explanation of Hunter’s Syndrome. Since I’ve become so active in various special needs groups I’ve heard about Hunter Syndrome now a couple of times. It’s difficult to understand and I can only imagine how difficult it would be to explain to others. I think your explanation is perfect! As for reacting in child-mode, I’ve been there. I noticed a kid purposefully pushing Owen down on a trampoline at a birthday party. He was being fine with everyone else except for Owen. Owen thought the kid was playing with him but he was being mean. He’d slam into Owen and knock him down and then look at the other kids and laugh. It took everything in my power not to throw him off the trampoline. Instead, I told him he was acting like a brat and that we don’t play with brats. As I pulled Owen off the trampoline. Ugh, the kid was only six years old. Thanks goodness its progress and not perfection!

  4. Vickie

    I get this! I get this. All of it!

    • Emily Eggleston

      I’m glad you can relate. Not that you experienced the same heartache but its nice to know I’m not alone. Thanks for your comment. 🙂

  5. Rachel O.

    Aw, this is so good! I read every word! You explained autism so well to those little girls. I’m so happy to hear that they immediately tried to be more conscious and thoughtful when they spoke to him. Sounds like it was a good talk!

    • Emily Eggleston

      Thanks Rachel! I’m so glad you liked it and read every word…that was a lot of words. I’m still struggling with keeping things short. The girls were more thoughtful and they have been since. Owen has also has been handling himself better when they are over. Only now when he runs back in the house and goes up in his room I no longer try to get him to come back outside to play. I realize now that he’s had enough and needs some downtime to himself. We all are just learning as we go.

  6. Alli

    You did such a good job! I remember being about 8 when I made a new friend in the neighborhood. She was incredibly nice and I loved playing with her, but her siblings (who I now know are both autistic) behaved differently than other kids. I never EVER asked “what is wrong with them” (my mother would have killed me) but I always wondered. It was hard to play with them, they would hit and punch and scream at me often when I was over. I was confused and didn’t know how to fix it. Eventually I stopped going there to play. Perhaps if someone would have told me what I was doing to elicit this behavior I could have stopped and we could have all learned to play together.

    PS. I am now in my twenties and that girl is one of my closest friends. We reconnected in high school and now I adore her and both of her siblings.

    • Emily Eggleston

      What a wonderful story! Thanks so much for sharing. I’ve learned throughout my life that the more comfortable I am with a situation the more comfortable other people are with it too. I want that for my sons. They have quirks and odd behaviors that are different from others. I don’t need to tell them that. They notice that no one else is flapping their hands and jumping up and down. That others can run and play without falling down or becoming overwhelmed. I hope that through my comfort level in talking about it openly in front of them and not keeping it a secret that they will later (once able to communicate better) be able to talk about it casually too. Being different takes courage but its such a more interesting way to live. 🙂

      I think its wonderful you reconnected with your childhood friend later on and have become close to her brothers as well. Thanks so much for your heartwarming comment.

  7. Crystal

    Emily I think you did a great job explaining to the girls about your son. I’m glad they understood and went on treating your son as they normally did. You wrote the story out so well.

    • Emily Eggleston

      Me too, they rolled with it quite well. Thanks so much for your comment! 🙂

  8. Marisa

    My heart ached for you in that moment of trying to calm Owen down and feeling so many different emotions. You could have so easily avoided another play date with these girls to protect your sons, but you didn’t. I loved the answer you gave even though I’m sure the question made your heart sink. Our first instinct as moms is to prevent our kids from getting hurt or feeling frustrated, but sometimes that’s not the best thing for them. Sometimes they need to grow from and through it, and sometimes it’s just unavoidable. I loved reading the whole story from your perspective and really appreciated your honesty!

    • Emily Eggleston

      Thank you so much for your comment, Marisa! As to avoiding another playdate, although so tempting, rarely have I found the easier path is the right path. Knowing that helps but some days are harder to walk through than others. Thank you for your kind words and support. I really appreciate it! 🙂

  9. Daisy Suman

    I love your writing style, Emily! It’s as if I am standing right next to you watching this whole episode unfold. I am so happy this ended on such a positive and hopeful note for you and your little one. A must read for all moms with children who are “different”.
    On a less serious note, I am a little jealous of your awesome backyard playground!

    • Emily Eggleston

      Thanks so much Daisy! I really appreciate your comment. I wish you lived closer because I’d totally set up a playdate and have you guys over! 😉

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