She Doesn’t Hear Us

“The amazing thing about Dov is that he didn’t begin to communicate until he was nine years old, and it was only then that we discovered a boy we had not known before. A smart, caring, wonderful boy who, when we asked him what he had been doing all those years, simply spelled out: “listening”.”                         
-Portia Iverson, Strange Son
 

 

Hope is always talking.

Even though Rhema may be sitting on the other side of the room, Hope pretends they’re at a tea party and runs over and holds out a cup to her sister.

“Rhema, here’s your tea. Here you go.”

But Rhema doesn’t look at her. She does not take the cup.

 

When Rhema comes home from school, Hope cries out,

“Hi Rhema! Hi Rhema!!!”

But Rhema does not respond, does not even look in her direction.

 

When we go outside, Rhema rushes out in front of us.

“Rhema, wait for me!” Hope calls cheerfully.

But Rhema never turns around. She does not wait.

 

When Hope is out in front, she stops and turns. She holds out her hand.

“C’mon, Rhema. C’mon.”

But Rhema does not come.

 

We had just finished bath time.

“Let’s go, girls,” I said. “It’s time for dinner.”

Hope was at my side, ready to go downstairs.

“Rhema. Come. It’s time for dinner,” I repeated.

But she was busy humming to herself and playing with the frayed edge of a towel.

Hope looked up at me.

 

“She doesn’t hear us, Mommy. She doesn’t hear us.”

 

The tone in her 2 year-old voice startled me. Resignation, a hint of exasperation, and… sadness. How long had she been thinking about this?

 

I remember. I remember thinking that too, once. Years ago, before Rhema was diagnosed. Is this a hearing loss we’re dealing with? I had wondered as we drove to an audiologist’s office for a hearing test. At least… at least, that would make sense…

 

But thankfully, Rhema’s hearing is fine. (For one thing, I know. She hears ‘I love you’ loud and clear!)

 
I stooped down and looked into Hope’s eyes. I held her face in my hands.

“She hears us, baby. So don’t you ever stop talking to her, o.k.??? Because she hears you. And one day, she’ll show you that she’s been listening all along.”

 

I’d love your suggestions on how and when to talk to a younger sibling about autism.

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18 thoughts on “She Doesn’t Hear Us

  1. My heart just ached for Hope thinking that Rhema could not hear her. I pray that Rhema will be able to show some kind of encouraging response to Hope soon. You are doing such an amazing job mothering and loving those little hearts!!

    HUGS and prayers!

  2. While not there in the same way, we have visited the path. The younger wanting to be friends and play with the older in a way the older just…well he just didn’t have a need for. Our diagnosis came later so our explaining of this thing called autism was shared with an older child but we treated it simply and matter of factly, introducing new tangents as they came up but never giving him more than he seemed ready for or asked for. With your love and care, Hope will be just as protective and loving of Rhema as you are….

  3. my heart is in my mouth… at 2 dear Hope has so much strength and love .. she could not have been more aptly named

    she will guide us all

  4. Tears….You are so “right on” in the way you implored Hope (and defended Rhema in the process, modeling advocacy!)to hold on to hope and “assume competence” as they say. I recall Allie asking me with a tinge of desperation, “when will he play with me?” My husband has a business colleague whose sister is severely impacted, grew up a generation ago, and only recently communicates with FC. He said to Jim years ago, the thing you’ve gotta know is they are always listening. “My sister heard everything.” Just like the quotation from Strange Son. As far as sharing with an older sibling: I used books like Ian’s Walk, My Brother Matthew, Andy and His Yellow Frisbee, Why Am I Different and Leo the Late Bloomer at Hope’s age. It gets slightly more complicated when she has to field questions from friends like “what is autism” but for now, anything you’d explain (her brain works differently or some things are harder for Rhema) she already knows full well. I think it’s mostly a matter of letting her know autism has a name and is a topic that’s ok to talk about with you. Don Meyer has excellent resources for later. Love you.

  5. I think of it as not one “big” conversation, but a life conversation as necessary. What you said to Hope was **perfect.** It will come up again, and I am sure you will know what to say when it does.

    love.

  6. Hi! such a wonderful post. You have a way with words. . . yes, as pixiemama said, it’s a continual conversation. What you said was perfect. Mostly kids want to know why they appear not to hear you (autism) can they get it? (obviously not) and mine wanted to know if he might get it later (no) and why his brother has it and he doesn’t. To which I answer the same reason Daniel has green eyes and you have brown. That’s the way God chose it, and it’s for a reason, genetics and we love him. And a lot of explanations as time goes on. My younger son (not autistic) doesn’t like to talk to me about it much. But he’ll stand in front of a cubscout troop and talk about it. And he likes to talk to the social worker at school. . . I don’t push it. That’s how we do it anyway

  7. I remember when Grayson was little my dad would say, “She doesn’t give a darn!”. At one year old, we’d sort of chuckle at her independence and focus (on whatever she was doing). Later, we understood.

    But still now on the outside, it does sometimes appear that she doesn’t give a darn. I know without doubt how untrue this is. But thanks for the reminder that younger siblings may not.

    We really look for opportunities to show them that she does care, she is listening, she wants relationship with them. They are there. In unexpected ways sometimes, but when we see them we are quick to point them out to our boys and celebrate – “Hey look, Grayson wants to play with you!”, “She’s sharing her strawberries with you!”. And the boys have caught on. Almost every day they find moments to cheer… “She smiled at me!”, “She’s looking at me!” And we follow with big smiles and the assurance on her behalf, “She really loves you”.

  8. Your response to Hope was just perfect… I had a similar conversation with Cuddlebug a while back when he was frustrated (and a little sad too) about Little Bitty’s lack of response when he tried to talk to him (although he’s an older sibling and was 6 at the time). As time has gone on, sometimes he responds and sometimes he doesn’t, but they know not to take it personally if he doesn’t and they just keep right on talking to him even if they have to follow him around :).

    Even though Rhema may not respond, you’re so right that she does hear and she is listening, and Hope will learn from your example. I remember as Cuddlebug and Bearhug first started talking more, how surprised I was at just how much they had been paying attention to all that time when it didn’t appear that they were paying attention at all…

  9. Precious Hope. She has such … hope. And, I discern a resolve within her–a determination to love and encourage, no matter what. I pray that the Lord blesses her heart with a response from her sister, one that Hope recognizes is just for her.

  10. Just a few months ago, Nigel and I had a little conversation about his autism and how difficult it was for him to learn to talk. He simply said, “Maybe I was just taking my time,” again bringing tears to my eyes. I believe they really are listening.

    I love what you said to Hope. And as for talking to younger siblings about autism, you’ll know when the right time is. It will just sort of present itself. Aidan was almost five when I told him about Nigel’s autism, but I waited because Aidan also had a language developmental delay, so he wouldn’t have been able to understand before then. One night when Nigel had a meltdown over a transition, Aidan asked, “Why does my brother act that way?” and I figured that was the perfect opportunity to explain it to him. When I told him, he took it in his stride, almost as if he had somehow known.

  11. Oh yes! It’s such a good reminder that our little ones do hear us, and to keep including them, talking with them, loving on them, even when it doesn’t seem they “get it.” I remember when we first started down this road with Josiah that I went to get his ears tested because he suddenly wasn’t responding to his name or commands. We were at the ear doc, and in a little listening booth. Very faint sounds like “sshhh hhhaaaa” were pumped in, and he started turning and looking for where those sounds were coming from. Yep, no hearing issue… check that off the list.

    Squeezes to your Hope and Rhema!

  12. This post just brought on the tears because it is so much like my situation with my two beautiful children: Daniel, who is 5, and Olivia, who is 3.

    I have never commented on your site before, but I am a regular reader. I have admired you from a distance! Daniel and Rhema probably have a fair amount in common. Daniel, at 5 1/2, has JUST recently started giving us contingent vocals. He has some word approximations but has a terribly difficult time with oral motor planning. His sis — like, Hope, ALWAYS talking — does her very best to find whatever way possible to bond with her brother. She has made comments similar to what you detailed from Hope. She is more likely to say that “Daniel is not listening to me.”

    Olivia will jump at every chance to do something “with” her brother. Because she knows how much he loves to jump on the bed, she asks me every night to turn on some music in my room so that she and Daniel can play on the bed.

    Just wanted to let you know there is a mom here in Texas who identifies with your beautiful stories about your children.

  13. you are such a wonderful mother!

    i wish i had good suggestions for how to talk to siblings but fluffy has none so… all i can say is that i LOVE the quote at the start of this post and i love what you said to Hope. YES YES YES! she CAN hear you!

  14. Hi! This is a beautiful blog and a beautiful post. I’ve written a lot about siblings and seizure disorders, about my boys and their older sister who can’t talk. What you said is absolutely right! I think being as open and honest about the disability, giving them age-appropriate information and then the o.k. to hope. Because without hope, you have nothing. Children are wise and accepting in ways that are beyond us, and I think siblings of children with disabilities might be more so. I also think it’s important to let the typical child know that they are not responsible for their sibling and that your good/bad moods are not dependent on their behaving. Enough sad — I’m off to read more of your posts!

  15. Amazing to watch my own two and to read your take on siblings falling in love with each other.

    I’ve got this blog on my blogroll these days, so now my mom is also a faithful and blown-away reader.

    thanks, Jeneil.

  16. Oh that sweet girl–she is so insightful! I agree with everyone–you handled it perfectly. It is so hard to explain this to children in a way they can understand. We wrestle with it daily…I just know you will know exactly what to say. God will give you those words.

  17. will you please stop making me cry!! 🙂 I love reading your posts … poignant, powerful, full of hope and love that connect with those who are experiencing similar situations. Your children are beautiful. And yes, she HEARS it all. She hears it. More than the ears… the HEART hears it all – always. 🙂

  18. I found two books for siblings of kids with autism that Hope might like:

    My Friend with Autism: A Coloring Book for Peers and Siblings by Beverly Bishop and Craig Bishop and Everybody is Different – A Book for Young People Who Have Brothers or Sisters with Autism
    by Fiona Bleach.

    Both are available through the Autism Asperger Publishing Company if they’re not at your local library or bookstore.

    Kisses to your girls! And to you, of course.

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