Language lessons with Rachel

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I’m watching Rachel do therapy. Watching her answer questions, amazed that she is able to answer yes/no queries, say the first sound of some words, and use colors for describing. She has come so far since the days of her dragging me to what she wanted and/or screaming while we try to hand her anything and everything just to have peace.

It is amazing to watch her progress, but also like swallowing a mug of rusty nails. Her therapist asks her if she wants the blue block. She signs yes and takes the green one. They drill it over and over until I am squirming in my seat, biting my lips, clenching my hands because I see the frustration mounting in Rachel’s face, fear the tantrum that might come, and, worse, I am sitting back in that developmental pediatrician’s office seven years ago, when Rachel was only two-years-old, bawling my eyes out, watching her fail test after test, realization dawning that life will never be easy for my precious child.

It is a strange feeling, to have this elation and soul-crushing grief share the same space in my heart. It is as if I will tear in half. Part of me rages and cries out to God, “Why?” The other half cries with relief, thanks God for the progress, because, at age nine, she is finally starting to communicate with some accuracy that the outside world can understand.

Sometimes I wonder if I will keep the pieces of myself together, how a soul can hold that many powerful emotions at once. But I cannot let go. I must clasp my burning heart together for Rachel. I must sit and watch therapy sessions even though I want to jump in and prompt her to answer, I want to run away when I see how hard it is for her, and I want to yell it to the world when she gets it right.

But I must settle for quiet, for high fives, for hugs, and accept her progress as she moves through life at her own pace. I must watch her fail, but not give in to my vortex of grief that pushes against me so that I can be there for her. I must accept the failures with the achievements. And I must accept the pace of her progress.

Rachel is beautiful, she is mine, and I love her for who she is.

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Resist the cuteness!

by Jennifer Dyer

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My daughter Rachel is cute! I think she has figured that out and uses it to her advantage. Because of her apraxia speech issues and autism, I fear I often underestimate her or feel sorry for her and give into her desires.

The other day I was trying to brush her hair, and we wound up in the usual triathelon of craziness: over and around furniture, Up and down the stairs, over the dog, and hand-to-hand combat. While it keeps me in shape, it does get tiring. Rachel’s ABA therapist was here, and she put down her therapist foot. “You have to resist her cuteness and stop giving into her. You allow this to be a game. When you tell her something mean it.”

I wanted to play innocent. “Who, me?”

Therapist wasn’t falling for my innocent wide eyes. “You have to stop thinking of her like a little girl. She’s a big girl. Stop doing everything for her and make her be responsible. Just because she has a difficult time talking and communicating doesn’t mean she isn’t aware of everything going on around her. I cannot stress to you enough how smart Rachel is. She knows she is cute and uses it.”

But…Cuteness “Wrong Wrong”

Gulp. I felt as though caught doing something naughty, but it’s nice to have someone advocate for Rachel and believe in her intelligence and potential.

She also told me to beware using that sweet little voice I often adopt when I talk to Rachel. She said to talk to Rach like I would any other eight-year-old. Otherwise people might not treat her with as much dignity.

She had a point. “Okay.” I wondered how I got stuck in thinking of Rachel as a little one. With eldest I made a natural procession from little kid to big kid. Perhaps she demanded it. Perhaps her verbal skills required more adult conversation. All I know is that I must be more mindful… It’s good to have people like Rachel’s therapist to help nudge me along.

So, I must resist when Rachel resists me with that adorable little smile on her face.

Dot’s I’m Cute song

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Motivation and autism

by Jennifer Dyer

We have issues. Who doesn’t? I struggle with motivating our autistic daughter, especially when it comes to getting out of bed and into the car. I’ve tried begging, pleading, crying, dragging, whining, sneaking up on her, carrying her to the car in her sleep, wrestling, and enticing with food. None of it worked. “Your sister will be tardy,” doesn’t work either. So, I resigned myself to dismal mornings filled with stress.

A few weeks ago I attended a conference by taught by Tamara Kasper who spoke on using ABA (Applied Behavior Analysis) techniques to motivate a child with autism to speak. (As we live in the RDI (Relationship Development Intervention) world, ABA is a bit foreign to our family.)

Before it started, I wondered if Tamara Kasper would focus on little drills to help children learn to speak in small steps, which is what I had understood about ABA. Yes, there was some of that, but the main point is finding ways to motivate children with autism and the proper way to use those motivating factors.

First, what does the child like to do? This question stumped me at first. I thought there was no way to motivate Rachel. We have bought almost every toy you could imagine and still were no closer to helping her engage with us. But when Ms. Kasper mentioned that one of the kids she had worked with liked to hug an empty gas can, I thought, “Oh, that kind of thing.”

In that case, Rachel likes vacuum cords, the vacuum hose, one Laurie Berkner video, and toys that squish. Usually. She also likes to swing, but only when she is in the mood. She takes my iPhone earbuds and flips them around, and found a rainbow-colored jump-rope at gymnastics that she loved. She often rotates what she likes, but I had a starting point.

So, now what?

What I gathered from Ms. Kasper was to start small. Work those motivating toys into activities, such as getting a child to name a picture on a card, but make certain you only use the motivators when you are working on the desired behavior. Put them away otherwise.

So, I thought about our car-in-the-morning issue. I bought the same rainbow jump-rope Rachel had seen at gymnastics and hid it. The next morning, I pulled the jumprope from my hiding spot and took it into Rachel. I held it out and told her she could have it in the car. She reached for it, but I pulled it back just out of her reach. She followed it down the stairs; once she got into the car I handed it to her. I let her have it until she got to school, then I hid it once she was in her classroom. The next morning I did the same, and it worked!

My plan this week is to expand upon the getting-up routine. Before she can have the jump-rope, I will have her brush her hair and get into the car. Once she is successful at that, I will add tooth brushing. Her speech therapist at school showed me a motivating board to use with this, so once I make it I will take a picture and post it. I also plan to incorporate more motivating toys.

We’ll see…

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