AUT-2B-HOME IN CAROLINA ~ Teaching our twenty-five-year-old daughter with autism and aphasia, who is still learning about God, the world, and its people with a little help from Charlotte Mason
Some of our special needs children face many illnesses, and a book like Hildegard's Gift by Megan Hoyt offers encouragement. In full disclosure, this review is biased because Megan is my friend. I did buy a copy for her to sign with my own money. And, if you don't believe my praise, read the wonderful review at Publishers Weekly. And, it happens to be on sale right now!
Hildegard was a composer, nun, herbalist, writer, and many other things who lived nine hundred years ago. From the time she was a young child, she suffered from terrible headaches that left her worn out and bedridden at times. Megan's book weaves many big ideas into this children's biography of Hildegard: not all gifts come in packages, with some gifts comes pain, sometimes our frail bodies need rest, sometimes we must persevere even when our body is not cooperating, sometimes our talents are as plain as day, and sometimes they appear in God's good timing. Megan sprinkled Hildegard's words throughout the text. The illustrations by David Hill strike me as Narnian, and that is the highest praise I can give to a piece of art. The tone of the book is sweet and gentle, but also gives children a glimpse of the dark times in Hildegard's life.
We were blessed on July 28 when Megan did a book signing event for us during Clockwise. My friends from prov.en.der came to Harvest and shared what they know about "unhurried time" with our teachers, parents, teachers from one of our sister schools, and homeschoolers.
Humility, being childlike, going through a day done Mason's way, helped us understand "unhurried time." We did copywork, studied dictation, recitation, picture study, history, poetry, prayer, hymns, literature, math, handicraft, nature walk, etc. Our special guest Megan introduced us to Hildegard, not just through her book, but in many ways. She gave us more details about her world and what life was like. She showed us paintings of how people portrayed this visionary woman.
Megan shared many delightful things about Hildegard in ways that tapped into our senses. Throughout the day, we listened to her music while we did work that required quiet thought. We tried singing "O Ignis Spiritus" in the best melisma style that we could. She invited one of our teachers, who grows all sorts of herbs in her garden, to share those that Hildegard might have enjoyed. I don't want to give it all away, but we enjoyed it so much I plan to invite her back so our kids can get to see a bona fide author who is published! If you live within a reasonable distance from the Charlotte area, I encourage you to contact her for a book signing.
Last fall, Pamela and I made a new friend who loves turtles. The other day, Pat found an eastern box turtle (Terrapene carolina carolina) stranded in the road, closed up tight in her shell, too frightened to head out of traffic. She took the turtle home to make sure all was well. We paid our first visit on the day our friend found it (September 7). We only observed the shell for the turtle was not hungry enough to risk peeking out of her refuge. We took pictures, answered some of the questions from the Comstock book (our stock in trade for nature study), and later made an entry in our nature notebooks at home.
Seeing the turtle shut up tight in its shell reminded me of what happens to children with autism. Something in the environment (a sound, a small change, too much information, a fast pace) makes them feeling like a turtle trying to cross the road with cars racing by. If they cannot retreat into a shell (quiet place, repeated words, rocking), they meltdown and tantrum or they completely zone out. If we try to make the world too predictable and safe, as my friend Di described in her recent blogpost, then the whole family ends up boxed up into a very small world.
Many people wonder how to help children in the spectrum find the world less frightening. Our second visit (September 14) to the turtle illustrates how to make this happen. After a week of living in an alien world, she—her brown eyes, flat bottom shell, and high upper shell are clues to her gender—learned to come out of her shell. Because she could see us through the clear, blue bin, Pamela and I created a little bit of anxiety. She slowly crawled into one corner of the bin and turned her tail to us. She tolerated us as long as we sat very still. If we moved too much, the turtle would move away and, at one point, she retreated into her shell.
Di posted a graphic with guidelines for encouraging meaningful interaction. We applied these ideas in our observation of the turtle: stay calm, be aware of sensory issues, stop the action, and speak less. When Pamela feels anxious, I force myself to remain calm and quiet, even if a storm is blowing and the power has been out for awhile. When she seems inexplicably upset, I pay attention to the environment to search for a cause, so we can deal with it. When she blusters because I am not giving into an unrealistic demand of hers, I stop the action. Any action I take causes her to increase her intensity. Doing nothing helps her realize the ineffectiveness of storming. When she is ready to process so we can figure out a realistic option, I match my verbal communication to hers so that she feels like an equal partner. I communicate with my face, hands, and body because she can understand and express herself in like manner (Relationship Development Intervention helped us achieve that miracle). I speak with declarative language (rather than issuing commands) because she needs to think for herself.
Slowly, the turtle emerged. She was hungry for she hadn't eaten the day before (typical, for turtles). Pat dug up four juicy earthworms and plopped dinner into the bin. The first worm wiggled fiercely but the turtle ignored it. We sat quietly and waited and waited and waited and waited. Ants crawled across the pavement. And we waited. Hummingbirds buzzed overhead. And we waited. Pat dropped a juicy worm right in front of the turtle, who sat on the wiggly thing. Mosquitos sucked our blood. And we waited. During this downtime, we reminded Pamela to sit still and avoid swatting the bugs. We reminded ourselves to sit still. The turtle took forever to find her courage.
Finally, we noticed her eyes tracking a worm. She slowly shifted her body in the right direction. A spider walked near Pamela's hand. And we waited. The turtle's head stretched out slowly. Then, very suddenly, very snakelike, she struck! She snapped open her jaws, picked up the worm, and gummed it to death for turtles lack teeth. She was a messy eater, leaving pieces behind. One bit of worm hung out of her mouth like a cigar. She was full after two worms.
People with autism process at slower speeds. While many can react to prompts quickly, you have to give them plenty of time to observe, process, decide, and respond. My friend Di had to wait 45 seconds for her son to respond when she first changed her communication style to foster interactions. His processing speed has increased dramatically now that they have been working on this for awhile! Pamela needs about 10 seconds to think through simple tasks. If language is involved, it takes much longer. When you give our kids the time they need to process and think, they develop the habit of processing and thinking and learn to do it more efficiently.
Pat decided to release her turtle into the woods near her home. Pamela watches and wishes her well.
A Facebook friend posted a link to an article about Representative Gabby Giffords' road to recovery since being shot in the head last January. The first minute-and-a-half of the radio program compares an interview with Gabby four years ago to her reading from her husband's new book. Her halted delivery reminded me of how Pamela reads. The description of Gabby's expressive language reminds me Pamela's road to language:
"It's very difficult to carry on a conversation. It becomes very one-sided."
"Her language is still halting — mostly one- or two-word thoughts."
"We can have a conversation — it's difficult for her. She struggles; she gets frustrated."
"Now, Giffords speaks in full sentences, according to Kelly. The challenge for her, he says, is stringing those sentences together."
"Language recovery has come slowly."
"I've come to learn that your brain can rewire itself to some extent. And she can find where those words are now located."
Isn't it amazing that a gun shot to the head causes the same kind of challenges Pamela faces with autism and aphasia?
While Giffords goes through hours of rigorous speech therapy every day, Pamela and I both burned out on it. Unlike Giffords who has already mastered the language once, Pamela is still building language from scratch. Giffords has been at it for less than a year; Pamela has been at it for twenty!
Last week, we were doing "exams" as I posted earlier. Our exams look very differently from what is usually done in this No Child Left Untested world because exams are basically narrations. I ask her to tell me about a topic, and Pamela shares what she knows. This exam is on mythology. Because she is not ready for the book listed for the year we are doing for CLUSA, I substituted an Ambleside Online book we have never read: Nathaniel Hawthorne's The Wonder Book.
I asked Pamela to tell me about her favorite story of the two we read last term, but she wanted to narrate both. The text of the two narrations are quite different and I have been pondering why. The story of King Midas was less complicated than the story of Perseus and Medusa: it involved fewer characters, fewer changes of scenes, and fewer plot developments. It had more of a repeated narrative (much like fairy tales). She could personally relate to the realistic elements of "The Golden Touch" while the story about Medusa contained far more fantasy. Pamela has an interest in children and the character of Marygold captured her imagination from the very beginning.
Pamela's knack for calendars and anachronisms came to light here. Hawthorne stated that Midas had turned a book into gold, but Pamela knew that the story was set in "B.C. times" and, therefore, he must have turned a scroll into gold. She may have trouble fully expressing her thoughts, but her chronology is superior to one of America's great authors.
Many years ago, before I learned other ways to approach language deficiencies, I drilled speech anomalies to the point of killing any joy Pamela felt in sharing her thoughts. Now, rather than stop her in the middle of a narration, I patiently listen because I know that recitation, copywork, studied dictation, and living books are more respectful ways to address grammar and speech glitches. All I do in the context of a narration is rephrase what she said to matching closely what she said in more correct English.
In the video, I edited out the long pauses between Pamela's initial sentences. I am not the most patient person, so, during this exam, I am knitting socks to prevent myself from jumping in too soon. When Pamela finally ran out of things to say, I probed a little further through declarative language. Asking questions that are too specific with clear right or wrong answers box her into a corner. Making declarative comments gives her aphasia a little wiggle room. I was fairly certain Pamela remembered Medusa's snake hair, so I guided her to it through declarative language. I reworded myself to give her a couple of opportunities, and Pamela didn't catch my drift until I asked about what animal her hair was like. You can see by her body language that she is quite confident in this process and she does not feel pressured or frustrated.
I will close an excerpt from the final page of Giffords' book, written and read in her own words and voice: "It's frustrating, mentally hard, hard work." Fortunately, we have learned to find joy, hope, and faith in this journey toward language.
Gorgon's Head. They had. He had a pierce. They had sword. They had cut your head. They had a fighting with kill Medusa's head Medusa's head was wicked. They had a shoe. They fly away. They had a horse, had a wing. Was cut. Medusa's hair was cut. Alive. Snake. Die. Medusa's head turn to stone.
Do Golden Touch: King Midas had a little girl named Marygold. They turned into gold. They had a strangers. They had rose turn into a gold. Scroll turn into gold. They cannot read. The stuff breakfast turn into gold. They cannot eat. They feel sad. They count the money. Marygold turn into statues. Feel sad. They had the water. They get rid of the gold. Marygold turned back to normal.
Steve does everything fast . . . he runs five miles most days . . . he zips through his check-list every weekend . . . he does mental arithmetic rather than use Excel. I can never decide if he is Ricochette Rabbit or Speedy Gonzales! One of the most difficult things about RDI for him is the S word: SLOW! Our consultant came up with a perfect analogy: our consultant is NOT a runner and, if Steve wanted to take her running, he would have to match her pace because she could not match his. Actually, the same is true for me! Steve would definitely have to slow down for me if I ever lost all my marbles and joined him for a jog.
Not only does he need to slow down, Steve needs to try to avoid QPCs: questions, prompts, and commands. Now, imagine asking a former Naval officer and current manager to avoid QPCs! To help him visualize this, we reviewed the Baby Alive video and talked about how he could have avoided QPCs. We realized the key is to fall back on nonverbals and speak declaratively. What worked for Steve was thinking out loud with Pamela. We talked about qualities of being a good guide, such as not being afraid to pause and wait for Pamela to realize she has an opportunity to react, but to avoid demanding a reaction from her.
This may seem obvious and easy, but I remember how HARD it was for me in this stage. I was trying to remember so many things at one time. It looks easy, but it is not! I think he did a fine job of coming out of ludicrous speed and working at Pamela's pace.
Last month, Pamela and Steve washed the car so Steve could try his hand at guided participation. They did this before Steve's week-long trip to Santiago and other busy-ness. The point of making videos is to watch them so that you can learn more about your relationship dynamics. This week, I pinned him down long enough to watch the two clips and make observations! We first read over the Powerpoint presentation about making videos that our consultant emailed last week. It is important to focus on the objective and make sure you edit it down to less than five minutes of all of the key points in the interaction. I tend to go over five minutes being the long-winded person I am!
Steve is your typical, type A, complete-everything-on-my-to-do-list guy. He runs circles around everyone and my dad calls him Whirlwind. He loves running so much that he even finishes marathons! So, when our consultant tells him to slow down to Pamela's pace, it requires a monumental effort.
Steve's Phrase: "Give her time!"
His Objective: I need to slow down in an activity that she could follow me successfully.
Overall Impression: Pamela is a great follower! She did really well.
Mastery: I did slow down more than usual. I could have been more nonverbal. I spent too much time describing. I need to say what the problem is and not tell her what to do. Rather than say, "Get more soap," I could say, "Your rag isn't very soapy anymore."
What Worked: I found ways to help her be more successful in the moment (switching hoses, giving her rags to carry instead of the bucket, etc.). The water fight was great!
What did not work: I am better about avoiding questions and prompts. But, I need to work on the commands.
Comments: I can see how watching the video reveals more detail than I recall from the interaction.
When people converse with one another, they engage in a form of dialogue called narrative--a storylike mode of communicating, composed of a sequence of events with people as main characters. In the narrative, which may be real or imaginary, characters' roles and mental states--feelings, intentions, beliefs, opinions, and knowledge--are revealed (page 52).
Charlotte Mason believed that the narrative style came easily to younger children once they had words:
Bobbie will come home with a heroic narrative of a fight he has seen between 'Duke' and a dog in the street. It is wonderful! He has seen everything, and he tells everything with splendid vigour in the true epic vein; but so ingrained is our contempt for children that we see nothing in this but Bobbie's foolish childish way! Whereas here, if we have eyes to see and grace to build, is the ground-plan of his education. Until he is six, let Bobbie narrate only when and what he has a mind to. He must not be called upon to tell anything (page 231).
For narrative to extend the zone of proximal development, it helps to establish a shared understanding with the help of scaffolding. The other day, we had some great interactions that illustrate this. Pamela and I made an elfball. (A quick aside for those of you looking for non-toxic toys for Christmas gifts, the toymaker sells her own book.) Pamela cut the entire thing all by herself, and I cleaned up three corners for her. Before taking the next step, I wanted to establish an understanding about how the flap folds need to be made along the lines. She tends to fold without looking!
Pamela could see the need to fold the flaps but did not see the inner lines that form the ball. I talked about what needed to happen next, and I thought she understood. When Pamela said, "I did it," I realized we had a disconnect. She needed more scaffolding to get to my level of understanding, so I demonstrated the next step and she caught on immediately.
I hoped Pamela might figure out what to do next. We needed to tape the flaps to the ball, so I tried to make the point non-verbally. An interesting thing happened. When I was going to turn my gaze to the drawer with the tape, Pamela spaced out (it started when she tapped her face). The brisk, "get on with it" Tammy would have snapped her fingers impatiently and said, "Get the tape." I am working on my personal goal to slow down. This time, I waited and moved my head in odd angles. I realized she was not paying attention, so I waited about fifteen seconds until she referenced me to tell me I could continue. One crucial element of scaffolding for most autistic children is to SLOW DOWN and give them the chance to process and think.
Another element of scaffolding for an autistic child is to communicate non-verbally.Because I have emphasized language and speech for so long, I have neglected body language. Part of the problem was I had read so much research stating that reading facial expressions was too difficult for people with autism. I did not even bother to try. However, since 70% of all communication is non-verbal, I now think it is important to make the attempt. Pamela and I are both way past the neural plasticity limit (that magical age of six) and, yet, we are both learning new ways to communicate! In this case, Pamela got stuck ripping the tape. In the past, she would persist in pulling up, instead of down along the jagged edge. So, I took the tape and demonstrated what to do. She grabbed the scissors, and I shook my head. She reached up to hold the tape, so I guided it into the position. Then, she had no problems with ripping the tape. This entire twenty-five second interaction is completely non-verbal.
I strung together a few examples of declarative language, the last element of scaffolding I will show today. I needed to cut off excess tape, and the imperative Tammy would have said, "Get me the scissors." The declarative Tammy asked, "What do we do about this?" Later, a piece Pamela cut needed to be cut in half. In the old days, I would have said, "Cut this." Instead, I observed, "I think this is too long." By making comments like that, I get to see how Pamela solves problems.
The main difference between being imperative and declarative is not necessarily words, but intent. If grabbing the scissors is the only "correct" response, then I am being imperative. Waiting to see how this interaction will unfold is more declarative. She might have disagreed and come back with, "It's okay." Or, she might have gotten a knife instead of scissors. On the other hand, she might have given me a blank stare. I learn more about how she thinks when I allow her to be an active participant.
At the end of the clip, the phone rang and I told her, "I'm ignoring the phone. The last time they hung up." Pamela stood up to get it, so I told her, "That's okay. Last time, nobody was on the phone. I'm not going to answer it." I had hoped she would ignore the ringing phone because I knew David would get it. I told her what I was thinking, and she decided to sit down and ignore it, too! However, if she had opted to pick it up and hand it to me, I would have answered it. The old imperative Tammy would have said, "Sit down. I'm ignoring the phone." Period. End of story.
These three elements of scaffolding are what I was missing before I started reading about RDI. I already knew about elements of teaching problem solving like breaking things down into manageable steps, including visual cues, demonstrating what to do, give feedback, only helping when stuck, being warm and encouraging, etc. What is new for me are thinks like slowing down, relying on body language rather than my mouth, and sharing rather than demanding. My focal points when interacting with Pamela are Slow . . . Quiet . . . Sharing.
Some of our special needs children face many illnesses, and a book like Hildegard's Gift by Megan Hoyt offers encouragement. In full disclosure, this review is biased because Megan is my friend. I did buy a copy for her to sign with my own money. And, if you don't believe my praise, read the wonderful review at Publishers Weekly. And, it happens to be on sale right now!
We were blessed on July 28 when Megan did a book signing event for us during Clockwise. My friends from prov.en.der came to Harvest and shared what they know about "unhurried time" with our teachers, parents, teachers from one of our sister schools, and homeschoolers.
Megan shared many delightful things about Hildegard in ways that tapped into our senses. Throughout the day, we listened to her music while we did work that required quiet thought. We tried singing "O Ignis Spiritus" in the best melisma style that we could. She invited one of our teachers, who grows all sorts of herbs in her garden, to share those that Hildegard might have enjoyed. I don't want to give it all away, but we enjoyed it so much I plan to invite her back so our kids can get to see a bona fide author who is published! If you live within a reasonable distance from the Charlotte area, I encourage you to contact her for a book signing.
