Notes so far


Rhema at age 2, listening to trees

Rhema at age 2, listening to trees

1) She hears music in the trees.

Yet when presented with verbal stimuli and asked to identify a tree in an array of four images (for e.g., a cup, banana, duck and tree) during a standardized assessment, she may or not be able to select the tree. Even though she loves markers and uses them every day she may only be able to demonstrate that she knows the function of markers with assistance and prompting by her teacher. In fact, she may engage in behaviors or seem to exhibit decreased attention when tasks become more challenging. Thus, she presents with “extremely low” receptive language skills. Year after year the evaluation scores are the same. The Peabody Picture Vocabulary Test – Fourth Edition may say she cannot label a tree… but now I know, I know, she has a poem about trees dancing in her head.

I’m so glad I know.

It scares me to think of how much I once believed and accepted assumptions about autistic people like my daughter – that she lacked understanding of emotions, that she needed to be spoken to in simple language and have things repeated over and over in hopes she might get it, that if she could not demonstrate that a hat is an item you put on your head then she must not know the function of a hat.

I’m so glad I know that tests, evaluations and experts have their place. But as Emma on Emma’s Hope Book wrote, “There is no test that allows me to show the creative ways in which I learn.” And that, “Believing in the potential of all students is not on any test.”

2) When I began working at home with Rhema, one of our biggest struggles, I thought, was in the area of attention. I wanted to write words on paper and show her how to use a pencil to point to choices on paper. She wanted to scribble intensely or shuffle the papers or erase whatever I wrote or break the pencil tips or bite the pencils, etc. Our learning time started as a tug-of-war over a writing utensil and usually ended with a pencil stab and a paper cut. One day I decided to remove all the pencils and markers from the room. I thought I would command her full attention once the distractions were gone. That of course backfired, too. I soon learned – with Soma’s help – that Rhema was attending all the while she feverishly scribbled on paper. So I let her color and scribble while I taught a lesson. When I asked questions, she learned to spell her answers very well.

In the beginning I was tempted to simplify the lessons. But I found that when we studied age appropriate material she became more engaged and so interested that she paused in her coloring to peer at what I was writing. This, from the child who is visually selective and has always struggled with joint attention.

IMG_0908 (1024x625) IMG_0909 (1024x652)

3) It seems miraculous. Rhema’s ability to spell and share her thoughts after so many years of silence. In fact, I asked her how she learned how to spell (because several people asked me and I didn’t really know.) She said, “I learned how to spell by noticing how letters worked.” She hums and rocks and needs continuous support throughout her day, she rarely makes eye contact and shows almost no emotion on her face. And yet in her words she communicates a depth, maturity, understanding and love that leave me speechless. Nearly every day tears of joy and amazement fill my eyes as she shares more and more with us. It’s unbelievable. And yet totally believable. It’s more than a miracle. She has worked so hard – almost every day for the past year – to be able to spell on stencils (and now type). And now we are blessed to see the fruit of that work.

Many years ago I read a beautiful piece by a father of a special needs child. He described his idea of erring on the side of “overbelieving” in his daughter. As Rhema’s parents, Brandon and I have tried to do that. The past couple months we’ve been able to get to know our girl in a way we could only dream of before… and we’ve discovered that our “overbelieving” was sorely lacking, that we’d been underestimating her all along.

And yet… and still she says to us, “Thank you for believing in me.”

So. All of our expectations have changed. The way we speak to her has changed. The way we envision her future has changed (-Rhema doing college level work someday is no longer outside the realm of possibility). The way we view her learning has changed. Now we know that speech – or the lack of – is not an accurate reflection of her intelligence.

As the father I read once said, ‘She has taught us that everyone needs people who love them enough to overbelieve in them.’

So far she has shown her own funny, amazing, Rhema-way of ultimately exceeding every expectation.

13 thoughts on “Notes so far

  1. what is there to say? I’m speechless really; in a good way. But I want you to know that I read and that I love this piece. Rhema has me on the edge of my seat waiting to see what else she offers to us.

  2. She is so smart and showing you every day! I have to say that the so called traditional “experts” do not really have their place when it comes to understanding how to reach our kids and most of all how to teach communication or academics. It took me a long time to see that but people like Emma really educated me and others so much. In the end the rote, repetitive style is how the standard ABA people are trained and will never fit in with how our kids learn. IMO it’s totally counter productive. Also, all the current “accepted” means of testing will never adequately show what the kids know or how they learn. Years of wasted time is something I wish we could get back.

  3. I think the response to this article from a few years back is an excellent example of how teaching communication gets missed by the so called “experts.” People need to understand that it’s all about teaching communication, not simply “compliance”.

    From the Boston Globe:

    School expands on mission to aid autistic children

    When a particular student acts up, Amy Giles sometimes places the girl in a tiny, windowless room and closes the door. Then Giles stands outside the closet-like chamber, waiting patiently until the child settles down.

    If it were another child, it might seem cruel. But Giles, a Westborough resident, is probably that student’s best chance for a quality education. Giles teaches at the New England Center for Children on Route 9 in Southborough, a school that is at the forefront of educating children with autism, a neurological disorder that dramatically inhibits the way a child learns.

    “We don’t want to be the biggest program for autism,” said Judy Cunniff Serio, director of administration. “We want to be the best.”

    So when Giles sends her student into that tiny room, it isn’t punishment. It’s a treatment called “removal for reinforcement” for a girl with autism who exploded because it was time to move from one lesson to the next. Without the serenity of the room, Giles’s student might never regain the focus she needs to continue a day of learning.

    “She has a little difficulty with transitions,” Giles said, not without compassion.

    “There are a few upsetting things about this article. First is that this school seems to think it’s ok to place children with autism in isolation rooms, because after all, they’re autistic. They can’t be expected to be treated with the same dignity and understanding as “neurotypical” or even other nondisabled children, because they’re “autistic” (sarcasm fully intended).

    For the record, “autistics” aren’t the problem; it’s individuals who don’t know how to communicate with them that’s a problem – either unintentionally or deliberately – and that’s understanding that a child with autism may react with aggression when met with aggression. It’s because the people who worked with this little girl refuse to learn how to speak “her language” [credit to Amanda Baggs, a “nonverbal” adult with autism] that this little girl is punished for behaviors directly related to her disorder, which, by the way, is illegal.

    Next, how is “isolation” therapeutic in this incidence? The little girl in question has been identified as having difficulty with transitions, as do many idividuals with autism. As a person with autism, she also has difficulty communicating in a way that “neurotypicals” understand, and so uses “behaviors” to communicate. If they know she has “a little trouble with transitions” and communicates the feeling of discomfort, unreadiness, or unpreparedness by “acting out,” why aren’t they using that knowledge to develop a “functional behavior assessment” to determine what “positive behavioral interventions” and techniques could be used to ease her into transitions, such as the use of a timer or countdowns, frequent verbal reminders, a pictorial schedule which she personally can use (PECS, etc.) or other techniques that are proven to be effective in addressing transition issues, and provide her with alternatives to communicating her needs, such as how to say she isn’t ready to “transition,” or maybe she just needs more time to process what was asked of her, rather than adult, teacher-enforced isolation, which research does not prove to be as effective as positive behavioral interventions, interventions which are to be used in accordance with IDEA law?

    Using isolation is not going to address two of her core deficits: a problem with changes in routine and communication. How is she ever going to be a productive member of society if she’s not given the “tools” or “skills” to become better adapted to change? No, let’s just treat her like a common criminal and lock her up in this tiny room until SHE calms down.

    Putting her in this room may only be reinforcing the very behaviors they wish to “extinguish.” Maybe she’s come to associate transitions with isolation, and so communicates her fears the only way she knows how, by exhibiting “behaviors” relating to the natural “fight or flight” instinct, or maybe she’s communicating by exhibiting “behaviors” to “explain” that she’s not appropriately prepared for a change in routine at that time, but maybe would be with appropriate preparation; instead, they “treat” her “behaviors,” her attempts at “communication,” with isolation. They’ve said it themselves, “removal for reinforcement.” They are using isolation to “reinforce” negative behaviors instead of “reinforcing” and “rewarding” positive behaviors. This child is destined for failure under this plan.

    I’m tired of children and adults with autism being blamed for their “behaviors.” Those “behaviors” are their way of communicating with us. Are they always appropriate? NO. Can we always figure out what they’re trying to communicate? NO. Can we give them tools and skills and other methods to communicate more effectively? YES!!! But we “neurotypicals” who work with children with autism also need to take ownership of OUR OWN ACTIONS and yes, even OUR INABILITY to understand what they’re trying to say, THEN we will see change for the better. It’s time to stop “passing the buck” for OUR inadequacies and blaming individuals with autism.

    Sorry, but if this school wants to be the “best,” they need to try harder and stop punishing kids with autism by putting them into seclusion. Sounds like they’re doing a lot of things right, but they also have a ways to go.
    Posted by FamiliesAgainstRestraintandSeclusion at 10:57 PM
    Labels: Commentaries and Opinions”

  4. Rhema’s story is absolutely amazing. It leaves my jaw dropped to the floor, gives me hope and brings a constant smile to my face…and a reminder to NEVER underestimate someone who has special needs.

  5. Once again….tears of joy…tears of hope….tears of happiness!!! Go Rhema!!! Go Team Rhema!!! Love and hugs to all of you!!!!!

  6. Leaps and bounds. I have a feeling that, the next time Rhema has an eeg, she is going to be on the way to full healing. Just felt I had to state this.

  7. Rhema, you are teaching me that God is bigger than our spoken words.You hear his voice so well, and you see his beauty – thank you for sharing what you know about God and how he is more than what we can understand, I am so glad you are learning to share what you know with us so that we can hear God more clearly like you do. I will listen for the music in the trees today – where else do you hear music?

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