A talk with Ane

Last week, the Webmaster took Ane out for some special one-on-one time.  On Saturday, it was my turn.

I had a haircut scheduled, so I took Ane with me (where she totally cracked up my stylist by sitting in the waiting area, reading the newspaper and looking so serious about it) and then we ran some errands together at the mall.  We wound down our time out together with lunch at the Old Spaghetti Factory (known colloquially in our family as “the Food Factory,” thanks to Veggie Tales).  Ane loves to eat there, and I decided it was time that I had an important conversation with her.

I recently picked up a book called Siblings of Children with Autism: A Guide for Families at the library, because I am always looking for new and different books on autism to read, and this particular topic is near and dear to my heart.  The book contained a chapter on how to tell your neurotypical child about their sibling’s diagnosis and disorder, depending on the child’s age and comprehension level.  After reading that part of the book, I knew it was time to talk to Ane and give her some age-appropriate information.

As we sat down to lunch, I casually asked, “Ane, can I talk to you about Tad?”

She shrugged her shoulders.  “Okay.”

“Why does he behave the way that he does?”  I asked her.

“I don’t know.”

“Do you have any ideas why?”  I pressed, genuinely curious to see if she did have an explanation.  If she had brushed me off again, I would’ve probably stopped the conversation.  But she gave me a thoughtful answer.

“It’s because his body, um, it doesn’t work right, so, he can’t really control himself,” she told me.

Impressed, I considered my own reply.  “It’s not really his body, Ane, it’s more his brain.  His brain is wired differently that most other people’s.”  I took a deep breath.  “Have you heard Mom or Dad use the word ‘autism’ before?”

She shook her head.

“It’s the name of a medical disability.  It means Tad’s brain doesn’t work the same way as other kids his age.”

“What’s a disability?”

“A disability is when something in your body doesn’t work the right way.  You know Heather?”  She nodded.  Heather is a little girl who is in kindergarten at Ane’s school, and who also attends our church occasionally.  She attended Tad’s preschool as well.  I forget what her specific medical condition is, but it is muscular and she can’t walk, and is wheelchair-bound (she has no learning disabilities).  Ane knows this about Heather, and befriended her when she came to Sunday school and felt shy.  “Heather has a disability.  She can’t walk.  Tad has a disability.  It’s called autism, and it means that he has a hard time behaving like a kindergartener should.”

Ane considered this for a while, and after we’d placed our orders for lunch, I asked her if she had anything she wanted to say.  She looked down at her placemat and said, “Sometimes I feel left out.”

I instantly understood what she meant, but I wanted her to say it.  “What do you feel left out of, sweetie?”

“Whenever you bring out the video camera to film, you don’t want me in it.  You only want Tad or Rerun.”

“We’re filming Tad and Rerun because they are doing certain things for the first time, and we want to get it on video.  When you did things for the first time, we taped you, too.”  I paused.  “And when it’s your birthday, are we going to spend time taping Tad or Rerun?”

She shook her head and smiled.  “No, because it’s my birthday.”

“That’s right.”  I smiled back at her.  “Honey, I know that things don’t always seem fair and that you get left out sometimes.  I know that Mom and Dad are busy and give a lot of time and attention to Tad and Rerun.  Tad needs lots of extra help and therapy, and Rerun is a baby and can’t do things for himself.  We can’t make everything fair, but if you are feeling left out, you need to tell us that.”

She nodded.

“But because you are a big girl who can behave, you get to do fun things with Mom and Dad like go out to lunch,” I pointed out.

Ane liked that, but then asked, “Does Tad do therapy at school?”

“Yes, he does speech therapy at school.  And then he does extra speech therapy and ABA on Fridays.”

“How long will he have to do therapy?”

“I don’t know.  Probably at least as long as he needs to be in school.  But that’s why he’s in a special class.”

“When will he learn how to read?  And do math?”

“It might take him longer, but he will learn to read.  He already knows all of his letters.  And he will learn math eventually.”  I leaned in.  “But just because Tad is autistic doesn’t mean he’s dumb.  Or stupid.  No one dumb or stupid could possibly know all that he does about sharks,” I told her.

She nodded slowly, then asked the big question.  “Will he ever get better from… what is it called again?”

“Autism.  And… I don’t know.  It will take a lot of time and therapy, but we are hoping that someday he can be just as grown-up as you will be someday.”  I looked carefully at her.  “Did you ever wonder why he does the things he does, or did you just figure that this was the way he is?”

She shrugged.  “I just thought this was the way he is.”

Our lunch arrived, and I was glad to hear her answer to that.  Apparently, many siblings, when presented with their sibling’s diagnosis, become concerned that they might “catch” autism.  Clearly, that was not at all on Ane’s mind.

As I was tucking her into bed that night and we prayed, she asked God to heal her brother of his autism (she forgot the word again and asked me what it was).  I choked back a lump in my throat, and added my own prayers to hers.  I don’t expect healing in the same way that she does, but that doesn’t mean I can’t pray for it along with her.

3 Responses to “A talk with Ane”

  1. Ressis
    November 22nd, 2010 09:19

    She’s such a sweet girl, I miss her so much, so does Little Cousin.

  2. Denise
    November 22nd, 2010 22:14

    Well done. Very, very well done.

  3. Nana
    November 23rd, 2010 21:09

    I’m adding prayers too, ’cause we love him so much.