Intentional Parents

Just wanted to share some potentially positive observations we’ve seen lately with Hannah.

First, her auditory processing seems to be improving. As part of her schoolwork each day, I read aloud a chapter from a children’s classic book. Right now we’re working our way through On the Banks of Plum Creek. There aren’t many pictures and I wasn’t sure how much of the story line she was comprehending. I would often skip sentences that I thought were not crucial to the plot in order to keep things moving along.

Well, a couple of days ago we ended up reading our chapter with Hannah sitting across the room from me so she could be in a makeshift tent that was in the room. I thought, “Oh, great. This will be a waste of time. She’s going to get really distracted.” But then I came to the part where Laura and Mary go wading in the creek and find a crab — except the paragraph doesn’t say that it’s a crab; it simply describes the animal. I read the description and took a breath to start the next paragraph, when Hannah caught my eye and said, "I think that’s a crab."

Then today when we were reading about Laura and Mary’s first day at school, I read the paragraph about their feeling awkward because their dresses were too short. The paragraph explained that the dresses were short because Mary and Laura had outgrown them, but I didn’t read that part. After we finished the chapter, Hannah looked at me and asked, “Why was Laura’s dress short?” I said, “She had grown too big for it.” Hannah smiled.

Which brings us to our second observation: Hannah has progressed in her social development to the point that she is often asking “Why?” I remember a few months ago determining that she was probably around the 18-month stage in social development. So, as annoying as the Why’s can get sometimes, we’re thankful that they mean progress. Seems like the Why stage is closer to two-year-olds or maybe even two-and-a-half.

Third, her verbal social interaction is improving. It’s quite common to hear her little voice asking a sister, "Will you play with me?" And if the sister is busy doing schoolwork, Hannah quietly goes to find something else to do. Her play skills are getting better too. Just today, when her sister helped her hunt for a certain toy, Hannah responded with, “Thank you for finding it for me” unprompted.

We’re thankful for these little glimpses of progress as we go through the days. She still is struggling with fine motor skills and reading skills, which can make our schoolwork sessions seem a bit repetitive (at least to me). But she cooperates happily when it is time to do schoolwork, and the Lord continues to bring us just the resources we need at the right times. Thanks for your continuing encouragement and prayers. Please pray especially that God would prepare her heart to understand salvation . . . in His time.

The past few months have had their ups and downs. Here is a sampling of what I mean, taken from the last couple of weeks.

A couple of weeks ago we were getting ready to go to the park. I called Hannah to me and told her that she needed to go use the bathroom and put on her sandals. She obeyed and did both requests. That’s when it dawned on me: last year – even six months ago – she wouldn’t have been able to do that two-step command independently!

Then yesterday she sat in a chair in the living room with a book open to one page for two hours. The girls and I made several attempts to invite her to interact with us, but she would quietly answer, “No, thank you” and continue staring into space. (We suspect that she didn’t take her enzymes at lunch.)

April 4, 2005: Excited about her birthday cake.

Today I decided to change her routine at the grocery store. She usually sits on a little bench that is attached to the cart, or “buggy” for all you southerners. Today I told her that I wanted her to walk beside the cart like the other girls did and to help me get the items off the shelf and put them into the cart. Then I braced myself for the meltdown. None came. She smiled the whole way through the store! I tried to use minimal voice instructions and mostly eye contact and facial expressions to direct her to the right items. The first item took a while; she smiled and nodded her head back at me but didn’t understand until I pointed and said, “Put it in the cart.” After that she understood the “game” and played it to the end. She actually enjoyed the change, helped to unload the cart onto the checkout counter, and stayed with us in the parking lot!

Those RDI-type activities of directing her with my eyes and expression remind me of Psalm 32:8, “I will instruct thee and teach thee in the way which thou shalt go: I will guide thee with mine eye.” Just as I want Hannah to be continually checking my face for direction, so the Lord wants our eyes to be ever on Him. He wants us to be sensitive to His slightest direction, not so self-absorbed or distracted that He has to take stronger measures to get our attention.

It’s hard to believe Hannah is seven years old this spring. This Sunday will mark three years since this journey began. (Yes, Mother’s Day was the starting point. Quite the significant holiday.) Thanks for sharing the ups and downs with us.

I just had to share an encouragement that God brought our way this morning. One area that I really struggle with is Hannah’s spiritual understanding and growth. I cling to the truth that God will not hold her accountable for what she cannot comprehend, but the enemy likes to plague me with guilt and doubts about assuming she comprehends less than she actually can and that I’m not teaching her enough about the plan of salvation. Right now I’m focusing on getting her familiar with Who Jesus is and that He loves her. We haven’t even started talking about sin and Jesus’ dying to pay for her sin. My goal right now is that she loves and trusts Jesus with childlike innocence.

Well, yesterday was a rough day for me and it carried over into this morning. We’re working hard on getting year-end bookkeeping tasks done and tax items ready for our business, and of course, a new piece of software was not cooperating. My second oldest daughter was with me this morning when I discovered another task that hadn’t worked properly. I asked her to go upstairs to tell Hannah that I wouldn’t be able to do Hannah’s school work until I had gotten this task fixed.

Soon she and Hannah were back downstairs in the bookkeeping office, and she said that Hannah had something to tell me. Usually when a sister says that, it means that a conflict has occurred and Hannah needs to confess something. Hannah came to me and gave me a hug and started making her little stuffed dogs lick my face. Usually those actions mean that she doesn’t want me to be upset with her and what she did. Mentally, I steeled myself for yet another “something that needed to be fixed.”

Hannah wouldn’t talk; she just kept smiling a little comforting smile and having her dogs lick me, so her sister explained. She had informed Hannah that I was sad because my computer was not acting right, and Hannah had said that she wanted to tell me that Jesus loves me. That’s why her sister had brought her downstairs to me!

Praise God for these little glimpses He gives us into Hannah’s heart.

At the end of this our first year using RDI therapy (Relationship Development Intervention), I wanted to give you an update on Hannah’s progress. We thank God for bringing RDI into Hannah’s life, though it is stretching me. She has just graduated from Level 1 to Level 2. Actually, we’re doing a few activities at the end of Level 1 mixed with a few at the beginning of Level 2. (In case you wonder, RDI has six levels with four stages within each level.) Here is a brief synopsis of our year.

January: We began at the beginning, trying to establish an emotional connection and give Hannah a reason to read our faces. She progressed through Level 1, Stages 1 (Attending, or paying attention to our faces) and 2 (Reference, or interpreting what our faces communicated). We were encouraged by her rapid progress; but we knew much of it was because we were working below her potential, trying to find out where she was on this spectrum.

February: We began on Stage 3 (Regulate), trying to teach her to adjust her actions based on what she read in our faces. Midway through the month she moved on to Stage 4 (Coordinate). It was at this stage that the progress slowed, and we had to spend a lot more time on each activity. We had found her baseline on the spectrum.

March through December: We have continued to work on Level 1, Stage 4, seeking to motivate her and encourage her to coordinate her actions with her play partner’s actions. We’ve worked on walking side by side, stopping when Mommy stops and going when Mommy starts to walk again. I’m sure we look a sight in the grocery store and library parking lots as all of us (Hannah, her sisters, and I) jerkily make our way across the pavement! We’ve worked on going fast and going slowly; talking loudly and talking softly; banging on a drum quickly and loudly, then quietly and slowly. At first, we announced what we were going to do, so as to prepare Hannah to coordinate her efforts. Then we moved to giving visual clues of anticipation without the verbal clues. We’re still working on that transition. The next step will be to help her notice and coordinate her efforts with gradual changes in pace and volume. We’ll start walking slowly, then gradually get faster and faster and see if she adjusts her pace to stay in coordination.

All of these activities are designed to help Hannah learn to live in (and possibly even enjoy) the ever-changing variations in the world we navigate every day. To give you a perspective, most babies progress socially and emotionally from Level 1 (focusing on faces and learning to read and respond to the varying expressions seen) to Level 2 (carefully observing and regulating actions to remain coordinated with a partner) at about six months of age. We praise God that Hannah has progressed this far at six years of age!

Christmas 2004 — Hannah examines one of her presents.

We continue to use ABA therapy for academic work and other concrete concepts. She can count up to ten objects with over 75% accuracy. My goal is 100% accuracy before we move on. We’re still working on the sounds that the alphabet letters make, recognizing and completing patterns, and writing upper and lower case. She’s progressed to copying short sentences one word at a time.

It was a joy to watch her happily anticipate opening her Christmas presents this year. In the past she has been pretty apathetic toward the whole concept of gifts, but this year she smilingly opened her presents in her turn and even held up one or two (when prompted) for Daddy to take a photo.

We look forward to what God has in store for 2005 as we continue on this journey together. Thank you for all your prayers, e-mails, and encouraging words. You are a blessing to us!

First, I want to thank you for praying about the upcoming school year schedule. The pieces seem to be falling into place, and the stress level is decreasing. We’ll “give it a go” on Monday.

Second, we want to share some very encouraging news that we received today!

A year-and-a-half ago (March, 2003) we used a test to evaluate how severe Hannah’s autism was. The test is called ATEC and is available on-line. Eighteen months ago we answered the detailed questionnaire and received the news that on a scale of 0-99 (0=mild, 99=severe) Hannah ranked in the 50-59 section: on the severe side of moderate.

Today we did the test questionnaire again. Hannah now ranks in the 20-29 section: halfway between mild and moderate! That’s a decrease in severity by half! Please join us in thanking the Father for His grace toward us. We’re very encouraged by the news and motivated afresh to keep chipping away at that remaining 20-29 score!

You have all played such an important role in Hannah’s progress, and we’re thankful for your faithful love, prayers, and encouraging words through the years.

It’s been quite a summer of learning and growing.

Our big prayer request right now is for the upcoming school year (which for us is September through August – all year round). Since Hannah is now six, we must include her in our homeschooling schedule, starting this September. By law she is required to have 4.5 hours of “school” each day. Please pray that I’ll be able to figure out how to work that into our schedule. With the older girls, I don’t worry about how much time we spend on book work because they are tuned in to their surroundings and learn from the educational environment of our home automatically. Their natural curiosity and nurtured love for learning drive them to learn all day long. With Hannah, however, I think we’ll have to be actively interacting with her for learning to take place.

Now, that being said, I want to praise God for showing me something over this summer. Because of a crazy schedule and other circumstances, I haven’t been daily spending time with Hannah doing ABA or RDI therapy. We’ve been doing sporadic RDI, but nothing consistent. But over the past month I’ve noticed a significant increase in Hannah’s playing with Sarah. I’ve also noticed improvement in her awareness and commenting on her surroundings. For example, this week we went to some friends’ house for dinner. One of their children was in a high chair off the corner of the table. The four of us parents were in the middle of an animated conversation when Hannah said, “Oh, he wants more cheese.” She was looking right at the child in the high chair. He was quietly asking for more cheese. She had noticed a person’s need and effectively communicated it (she spoke loudly enough for me to hear her) in the middle of a high level of noise from our conversation.

The Lord is pointing out to me events like that to reassure me that I don’t have to panic about the upcoming school schedule. He also reminded me of what’s most important by having a visiting missionary at church mention 2 Corinthians 4:16-18. He didn’t expound on the passage, but it pricked my heart and called me once again to focus not so much on Hannah’s physical capabilities (“what is seen”) but on her spirit and soul (“what is unseen”). By the way, she’s starting to interject her own short sentences when we pray aloud as a family or at bedtime!

So, bottom line, please pray that I’ll have the clarity of mind to focus on what is most important and create a daily schedule that will reflect those priorities.

This past weekend I attended an RDI (Relationship Development Intervention) workshop. The information I received was well worth the time and money invested.

Highlights of Information:

As we had thought, ABA and RDI therapies address different aspects of autistic children. I’ll try to put the information in short form here, then elaborate on some of the unfamiliar terms. When you read the short form, I think you’ll understand why I had “brain drain” when I got home. But hang in there, and I hope it will make sense as you keep reading.

Development Areas: ABA vs. RDI

• Emotional: identifying and labeling vs. referencing
• Social: procedures and scripts vs. regulating
• Communication: imperative and instrumental vs. declarative
• Memory: rote vs. personal, episodic
• Cognitive: rules vs. contextual, relative

Emotional: Hannah can identify emotions on people’s faces because we’ve drilled the obvious ones over and over. She can even label the emotions. But she doesn’t reference, or read, people’s faces around her in order to get feedback on what’s happening and how it might affect her. RDI emphasizes referencing. The speaker used the illustration of teaching a child to look at a book (remember our first ABA drill was “look at Mommy”) vs. teaching a child to read a book. Hannah complied with our prompts to look at people, but she had no reason to do it on her own (without prompts) and didn’t know why she was doing it.

Social: Autistic children excel at learning procedures and memorizing scripts to use in certain social settings. For example, when a person comes in the door, we say, “Hello.” But we can’t teach a script or procedure for every situation Hannah may encounter in her interactions with other people. She must learn to regulate her actions based on her referencing of them. We regulate all the time without realizing it (change volume of voice, change distance from person you’re speaking with, walk faster or slower, etc.). She needs help to learn how and why.

Communication: Imperative, instrumental language can be more easily understood as “demand” language. We use that kind of language all the time in ABA therapy: ask the question and expect the one right response. Declarative language is simply stating a fact or opinion without demanding a certain response from the listener. Neurologically typical people use about 80% declarative language in conversations. Hannah needs to learn to hear and use declarative language in order to keep a “normal” conversation going with another person.

Memory: Most autistic kids are great at rote memory, remembering the facts. The part of memory that is missing for them is personal episodes and how the events affected them emotionally. The speaker gave this example: When you hear 9/11, you recall how the events of that day affected you personally and emotionally. You don’t file that memory in your brain under “the color of the couch” you were sitting on when you heard about it. Autistic kids’ neurologically-damaged brains don’t make that emotional connection automatically. They basically have no personal, episodic (episodes) memory. We have to help them create those memories and review them often to enable them to develop a sense of “self” and some common sense. For example, if you don’t remember how running out of gas affected you personally, you won’t have the motivation to avoid running out of gas in the future.

Cognitive: Autistic children operate under a right-or-wrong mentality. They usually think in absolutes. We need to help them learn to think contextually. For example, how long is long enough to study for a test? An autistic child would want a set length; he would struggle to understand the concept of “until you know the material.” He might reply, “How do I know when I know the material?” Hannah needs practice thinking about what is good enough in settings when no absolutes are applicable.

Bottom line: ABA therapy is great for teaching facts and rules; however, it doesn’t address the need for learning how to live in an ever-changing, uncertain world with other people.

Changes we’re trying to implement:

• We are trying to use declarative statements more and “demand-language” questions less. It’s a challenge, because with most young children we use questions a lot in order to help them learn. (“What did you do today?” “Was it fun?” “Do you know who’s coming tomorrow?” “What are you doing?”) We have to re-train ourselves.
• We are trying to incorporate the principles of RDI into everyday life situations and not just our “lab” time when we do the activities in the book. In regard to referencing, we are looking for ways to create a sense of uncertainty or anticipation so Hannah will have the motivation to reference our faces. If things are predictable, she has no reason to reference.
• We are trying to look for everyday situations in which we can encourage Hannah to regulate her actions to fit in with ours. This objective is a step-by-step process. Currently, we’re working on getting her to start and stop a simultaneous activity with one of us. I think we made a little progress today with banging wooden blocks together. They make a nice ringing sound in your ears, so Hannah loves them.
• We purchased a dependable digital camera so we could try to capture personal, episodic memories for her and archive them for frequent review. This is a bit tricky, in that the event must not be the focal point; the picture needs to catch a moment of emotional connection with another person with the event simply as the backdrop. I think we’ll be taking a bunch of pictures, trying to find the gems amid the rocks

I realize this letter is long and probably a bit mind-boggling. Thanks to all of you who try so hard to understand autism in general, and Hannah in particular. Thanks also to all of you who pray even though you don’t understand autism much. God knows exactly how Hannah’s brain works, so it’s more important that we talk to Him about her than that we try to figure it all out ourselves.

In closing, I want to assure all of you that we don’t in the least think ABA was/is a waste of time. It is an effective tool to have in our chest of resources, and we plan to use it. We thank God for bringing another tool called RDI into our lives at this point, and we plan to use it too.

Best go change the batteries in that digital camera. We took an awful lot of pictures today!

I wanted to share with you a little scenario that encouraged us quite a bit today. As you know, this new therapy we’ve been introducing (RDI) emphasizes social interaction through play activities. We’ve seen Hannah’s eye contact and social referencing increase significantly in the last few weeks.

Today we went to a nearby park to play for a little while. The older girls were on the swings, and Hannah and another girl were the only two on the playground equipment. I was standing near Hannah to keep an eye on her and discourage any getting-stuck-in-a-routine actions. The other little girl approached Hannah and asked, “Do you want to play?” I held my breath. Two years ago Hannah wouldn’t even have acknowledged the girl’s presence; one year ago Hannah would have glanced at the girl and walked away. Today Hannah replied, “Mmm, hmmm” (which means yes but is so hard to type!). The older girls came over to stand in the shade with me and we watched the scenario unfold (and evaluated Hannah’s actions to identify what we still needed to work on Here is what we observed.

• At least half the time Hannah interacted appropriately with the girl, following her lead. Whenever there was a break in the interaction, caused by Hannah’s not responding to subtle social cues, the other girl would take reparative action and re-initiate the interaction. Hannah would then respond.
• Hannah picked up on a quick abstract suggestion from her play partner. On the playground equipment there were four short plastic tunnels that formed a square. The girl said, “Let’s go through the square. You go that way; I’ll go this way.” Hannah turned and started through her tunnel while the other girl turned the opposite direction and started through hers. When they met in the middle, going opposite directions, Hannah was a bit taken aback. But the other girl told her to wait, crawled through the tunnel, then told Hannah to go through in her direction — which she did.
• Hannah did not pick up on an implied play request. The girl walked under the playground equipment and between the four plastic tunnels and called, “I’m in a trap!” Well, the implied request was, “Come help me get out.” Hannah didn’t catch that and broke off the interaction by wandering away to a different piece of equipment. The girl noticed and followed, reinstating the play by calling out, “Wait for me!”
• Hannah does not comprehend how to play tag. The older girls have tried to teach her, but she doesn’t get it yet. The little girl tried several times to entice Hannah to chase her, but Hannah would turn and do other things instead.
• When it was time to go, the little girl came over to say good-bye. Hannah listened, then turned away. So I turned her around to face the girl and said, “What do you say?” She said, “Thank you.” (We’ve been using the cue “What do you say?” a lot to teach when to say “thank you :-/ I told her, “No, you say good-bye.” Then she said good-bye. Mental note: need to mix up those scripted cues instead of always using the same one

We’re excited to see this much progress! I remember last fall when we were at a different park and a little boy came up to Hannah and asked, “What’s your name?” She didn’t answer that day. Today she interacted with a little girl her size for a good 15-20 minutes, with little to no guidance or coaching from us. Please thank the Father with us.

Spring 2004 — Hannah is starting to connect.

It’s been one month since the Lord led us to research and implement a new therapy for Hannah, and we’re seeing exciting results. Thought you might like an update.

The new therapy is called “Relationship Development Intervention” (RDI). The creators studied the social and emotional development that a typical baby goes through as she grows during the first few years; i.e., how she forms emotional and social connections with those around her (connections that most autistic children lack). They then categorized that development into six levels, with four stages within each level. Finally, they came up with activities to encourage and help an autistic child make progress in each level and stage. We’ve started using some of the activities, and Hannah is making a lot more eye contact (and not just eye contact; she’s actually referencing our faces for information and shared emotions!) and interacting more with all of us.

RDI is almost the complementary antithesis of ABA (the therapy we started with a year and a half ago). It’s almost a right-brain vs. left-brain comparison. ABA is structured with concrete answers; responses are either right or wrong. RDI is fluid with variations and surprises that come in typical personal interactions. We’re excited how God brought RDI into our lives at just the right time: when Hannah and I were both beginning to tire of the rigid routine in our ABA sessions and she was having trouble grasping the next skills on the list. We needed a change, and RDI brought a huge change along with helpful developmental progress. We have no plans to abandon ABA; we think RDI will be a great complement to it and help us keep Hannah’s therapy well-balanced.

We also praise God for how He put our family together. As you know, we have four daughters. The second oldest is a lot like me in temperament: definitely left-brained, systematic, organized, concrete thinking. She (at age 11) is a natural in the ABA therapy. Our oldest daughter is a lot like my husband in temperament: definitely right-brained, global thinking, problem-solving, sees all the options, fluid thinking. She (at age 13) is a natural at the RDI therapy, and she’s been helping me do the activities everyday. I had to laugh when I read the first few activities in the book, because I kept having flash-backs to times when my husband or our oldest daughter had implemented those concepts during their interactions with Hannah throughout the last year, just from their own imaginations. Our third daughter, who shares a room with Hannah, is almost a mix of the two. She’s great at involving Hannah in play and then weaving a little learning into the play.

Thanks again for all your prayers for Hannah and us. The Lord is faithful as we continue on this journey.

If any of you would like more information on RDI, you can visit the Web site www.rdiconnect.com.

Fall 2003 — “You’re a green turtle!”

Two of the girls were in my office doing their spelling lessons today when Hannah started playing with a box. I told Hannah that she wasn’t to play with that particular box but she could go get a laundry basket to play with instead if she wanted to. She came back into the office with the big green laundry basket. Next thing we knew, she lifted the basket over her head, lugged it over to her oldest sister, and “captured” her inside. Hannah climbed on top of the basket and triumphantly proclaimed, “You’re a green turtle!” That oldest sister, who is taller than I am now, was a bit squished! Her other sister and I thought it was hilarious.

Hannah continues to make progress steadily, though some days it seems like we are going at a turtle’s pace.