“One Thing I Don’t Like About Autism.”

cuddle time

We’ve been pretty open with both our children about Autism since our daughter was first diagnosed, about 2 1/2 years ago.  At first, we talked about it in terms of similarities and differences.  We are all “different” and have different things we’re good at, and struggle with.  Noah is only 15 months older than his sister, so that was all that made sense then.  Noah took it in relative stride.  He struggled with reading, which is hard to remember now since he loves it, but he was afraid he would never be able to read.  Sage could.  It was just one more way they were different.  “You can make and keep friends easily, right? Sage struggles with that.  We all have things that come easy, and that are really hard.”

About a year ago, we started using the word “Autism.”  Not much else changed but the word.  “You know how we talk about how everyone is different, and that Sage’s brain works a little differently.  There is a name for it.”  He asked many of the normal questions.  “Can I get it?” “Will she be okay?”  No.  Yes.  Since he asks more questions than many lawyers I know, it is fair to say he had an ample education that day.

His next stage was to see what it looked like in other kids, “Does Jacki have Autism?  How about Keith?  Amber?  What about that little boy we met last week who wanted to take the same walk over and over with me? “Yes, he does have Autism.  It’s hard to guess, though, huh, and you made friends with all the kids, and enjoyed them all?”  Noah is amazingly accepting.  Whether it’s who he is, what his sister has taught him, or both, we will never know, but it is wonderful to witness.

Yesterday, on a family hike, his sister lagged behind, again.  “There’s ONE thing I don’t like about Autism,” he declares.  [Pause and gulp] “What’s that honey?”  “I don’t like that she doesn’t stay with us, and she needs to catch up, and when we wait for her and call to her, sometimes she doesn’t answer.”  Big brother worries about his sister.  “Yes, I do.”  Over the past month alone I’ve heard him make plans to sit with his sister on the bus to summer camp to make sure she’s okay.  He will slow down on a walk to make sure we don’t “forget” her.  He’ll take up the rear walking the dog to help her know when cars are coming.  He helps her look both ways before crossing the street.  Even at a mere 6 years old, he knows some of the biggest characteristics of Autism, at least in his sister.  She is impulsive at times and doesn’t exercise caution with safety issues.  Luckily, she has a budding police officer/firefighter for a brother who follows every directive ever given.  She cannot easily, or on demand, participate fully in a conversation.  One word answers, multiple choices and one-liners from movies are her primary ways to communicate.  Her big brother is sure to pay attention to all her favorite movies so he knows what she means when she says something about “a tarantula, a penguin and a spider.”

Like so many of life’s challenges, this one is best faced directly, and with simple, honest answers.  There are frustrations and tears; yet, when a mountain is moved, there is more joy and gratitude emanating from these 5 and 6-year-old spirits than I see from most adults.  “Sage, do you want to come take turns on the swing with me?”  “Yes Noah, I’m coming!”  That’s all our household needs to end a day knowing “all shall be well.”

noah sage mountain

For help for siblings, start here, at AutismSpeaks.  All shall be well.

8 thoughts on ““One Thing I Don’t Like About Autism.”

  1. This was beautiful. I love the amount of caring that your son has for his sister. He is a wonderful big brother and your daughter is so lucky to have him (and you and Natacha) in her life!

  2. This was really beautiful to read. I have long been interested on the effects of having a special needs sibling on the “normal” child. I have close friends who really suffered as all the attention was on the SNS, whether because s/he required it or because the parents felt guilty or overprotective. I have another friend whose experience with her SNS forged her life’s work, to help people with his particular condition. I don’t know what makes kids react as lovingly as your Noah, versus withdrawing and feeling hurt and left out. Is it the kid? Is it the parents? Surprisingly, there are very few books on this subject. Maybe you and Natascha can write one.

  3. Sharlene– What a treasure, your sharing of Noah’s and Sage’s sibling interactions, their love and Noah’s caregiving and Sage’s receiving and giving of love. Yes, all will be well as you and Natacha parent and witness these two every day. You and your whole family are so loving and lovable–

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