Intentional Parents

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.

Just had to share that this morning Hannah made her bed all by herself while I was in the other room, and tonight she got her toothbrush ready all by herself while I was in another room. Whoopee!

This morning I told her to make her bed, then I left just to see how far she would get on her own. (We’d been making it together for several weeks with me talking her through the task step by step.) She did it just fine — all by herself.

Tonight I told her to get the toothpaste out and I’d be back in just a minute to get her toothbrush ready. When I returned, she had gotten her toothbrush out of the holder, gotten the toothpaste out of the cupboard, unscrewed the toothpaste cap, and put just the right amount on her toothbrush. She was in the process of screwing the cap back on the toothpaste when I came in the bathroom. My first thought was that her sister had helped her, but she was as surprised as I!

What an encouragement! (Now I’m wondering what else she knows how to do but I don’t know that she knows, you know?

Thanks for praying with us as we tried the changes to Hannah’s diet and the enzyme approach. Here is what we noticed.

We started phasing in two different enzymes (I’ll refer to them as ZP and Pep) on May 9, beginning with the ZP. We were up to full dosage of both enzymes by May 26. On June 12 we ran out of ZP but continued with the Pep. We ran out of Pep enzymes on June 25.

• First, her ABA scores. (You’ll remember ABA is the technique we use in our sessions to teach her skills. We keep meticulous records on each day’s sessions.) In all of February, March, and April she mastered a total of two skills. In the month of June she mastered six skills. Four of which were after we ran out of ZP and she was taking only Pep. She also seemed more focused during our ABA sessions during that final week on Pep than she does now.
• Second, Sunday, June 23rd, Hannah spontaneously started using people’s names appropriately when addressing them within the family (“Yes, mama”; “Yes, (sister’s name)”; etc. for all our family members). We ran out of Peptizyde on Wednesday the 25th. Friday and Saturday she started reverting to a “default” of using “Yes, mama” for everyone.
• Third, Sunday morning (June 29th) in church she had a meltdown.

So based on those observations, I ordered more Pep. I’m opting not to use the ZP right now because I didn’t notice a difference with that one. The big progress seemed to come after the ZP ran out and she was only on Pep.

If any of you see a flaw with my reasoning, please feel free to point it out. I didn’t really notice the difference until we stopped the experiment and did the “hindsight” thing. If y’all agree with my reasoning, then please pray that the new bottle of Pep arrives quickly!

Today we were at the rubber stamp store. I was holding Hannah’s hand to keep her near me. She let go for a minute to readjust the stuffed animal that she was holding in her other hand. Then the BEST thing happened: she looked up at me, smiled, and reached for my hand again! I can’t remember her ever reaching to hold my hand; I’ve always reached for hers. Of course I teared up right there in the store!

A little thing to most moms; a big thing to me. Thank You, Lord, for little big things!

One year ago today I took Hannah’s hand and led her, crying and with her arm flung over her face, to the guest room downstairs for our first therapy session. We sat in facing chairs with her little legs couched between mine, so she couldn’t run away. Her first lesson was “Look at Mommy.” She would cry and curl up in her little chair whenever I gave the prompt. On the ninth try, she glanced at my face . . . and that was the beginning of her progress.

That day we also started to teach her to imitate, something she didn’t do naturally. I would clap my hands and say “Do this,” wait two seconds for a response, then gently take her hands and clap them. Again, she didn’t figure out what to do until the ninth try.

Our third skill was trying to get her to point to what she wanted, since she couldn’t ask for it verbally. (She was four years old.) She had never pointed at anything previously. I would say, “Hannah, what do you want?” while holding up a piece of cookie. Then I would form her little hand into a “pointer” and guide her to touch it. She got two out of the ten tries for that skill also.

You’ve traveled the journey with us, and it is time to celebrate what God has done for Hannah over this past year.

She makes eye contact when we remind her. We’ve also “caught” her looking at people in a crowd. She’ll watch a person in the row in front of us at church, or watch a person in our living room during small group. Yes, she still has rough days when she doesn’t want to “look at Mommy,” but she’s taking longer looks into our world and venturing in more often.

Summer 2003 — Hannah rides her sister’s plush seal.

Having three sisters has helped so much with Hannah’s imitation skills. She is learning how to play by watching her sisters. (You’ll remember that a year ago she didn’t know how to play. She would simply line everything up over and over.) She has recently started writing letters and numbers and drawing pictures by imitating and copying. In fact, we’re just finishing up a study of ancient Egypt in which she has been present but not expected to participate. She drew something on the whiteboard yesterday in the craft room and told the girls that it was “Egypt.” We slowly realized that she had copied the pharaoh’s mask that the girls were making out of paper mache. She had the circle for the head, the stripes going out of the head, and the false beard, complete with circle at the bottom (because the girls used a toilet paper tube to make the shape of the false beard in the paper mache mask).

I remember one year ago looking at the list of skills that was to form our curriculum with Hannah and thinking, “There’s no way she’ll do that.” Especially with the Expressive Language goals, I told myself countless times, “We can’t force her to talk. There’s no way.” One year later Hannah can now point, and does often, but she can also tell us with her own voice what she wants. I remember distinctly the “meltdown” day followed by the “break through” day. Meltdown day was the day we sat at the table with a bowl of ice cream, determined that she would say “ice cream” before I would give her a bite. I’d heard her say it before in other situations, so I knew she could. But every time I prompted her, “What do you want?” she wouldn’t say it. We were both in tears at the end of our ten tries; in fact, I think we only make it to seven or eight tries before we just sat and sobbed. But then the Breakthrough day came. As we sat for the umpteenth time pointing to a picture in a book and asking, “What is that?” the Holy Spirit gave me an idea out of the blue. I know it had to come from God because I certainly wasn’t trained in this therapy and had never before encountered anything like what we were facing now. The idea was this: Give her the beginning of the word. So I pointed to a picture of a horse and said, “What is this? . . . Hor” and she said “s.” And that technique opened the door. She still needs lots of shaping and practicing with her expressive language, but one year later we are working on correct usage of pronouns. I never thought we’d get to that skill on the list!

In fact, we have accomplished all 59 of the Beginning Curriculum skills and all but 12 of the Intermediate list of 87 skills. She’s gone from “Points to desired items in response to ‘What do you want?’” to “Describes objects in view using attributes.” All praise to God!

Please be sure to thank the Heavenly Father for His goodness to us this past year. And please join us in prayer about two specific things.

1. Perseverance. It’s hard to believe that we’ve done this therapy for a full year. It has truly been a day-by-day process. Many days I thought, “I don’t want to go down to that room and do this again.” (Isn’t that awful to admit? But it’s true.) But God has given us grace and strength to persevere thus far. We know that His grace and strength will not run out; that’s not the problem. Pray that we will be faithful to rely on His provision and not ourselves. That we will persevere in this journey with His loving hand upholding us.
2. We’ve started making some changes to Hannah’s diet to see if that will help her. We’ve done lots of research and are finally ready to implement the results. In a nutshell, many autistic children are affected by gluten (found in wheat, barley, and some other grains) and casein (found in dairy). The theory is that their bodies cannot properly digest those proteins, so the proteins form peptides that make their way to the brain and create havoc. There’s really no reliable test that can determine whether the dietary change will help; you just have to give it a try. You can take two approaches: eliminate all gluten and casein from the diet or give extra enzymes to help break down the gluten and casein in the diet. We’ve chosen the enzyme approach right now. Please pray that we will have wisdom and keen observation skills this month especially. We should be able to tell by the end of a few weeks whether this treatment will make a difference to her.

I realize this has been a long letter, but I didn’t want to rob God of any of the glory due Him so far on this journey. Thank you for coming alongside us, for holding up our hands when we grew weary, for weeping with us over disappointments, for rejoicing with us over victories, and mostly for lifting us before the throne of God that we might “obtain mercy and find grace to help in time of need.”

Dear Friends,

We could not have come this far without your faithful prayers and encouragement.

During this past month Hannah passed two significant milestones:

1. Hannah can copy (write) her name!
2. Hannah is reciting long verses and imitating prayers.

I thought it was significant in the past that she could memorize and recite anything and everything except Scripture. Then, one morning when the girls and I were doing our Scripture memory, a little gleam of light peered through the crack as she recited a short phrase aloud. Since then the crack has opened wider as she has begun to recite such things as, “Meekness — patience without anger. Titus 3:2: ‘To speak evil of no man, to be no brawlers, but gentle, showing all meekness unto all men.’ Titus 3:2.” Needless to say, we are thrilled!

As far as the praying goes, she had started to remind us before meals that it was time to pray. Since she hasn’t yet mastered her pronoun usage, she would say something like, “Hannah wants to pray?” meaning, “I’m ready to pray now.” So one day I looked at her and said, “OK, go ahead. You pray.” and she did! She recites phrases that she has heard us say in prayer, but she picks and chooses the ones she wants and strings them together with a definite “Amen” at the end

Please continue to pray that the Scripture and prayer will make the journey from her head into her heart. I’m continuing to read Bible stories to her, though she is at the stage where she used to be with the Scripture memory — “anything but that.” She’ll sit quietly, but shows no interest. I figure as long as she’ll sit quietly, I’ll keep pumping God’s Word into her mind

We’ve come a long way in the past ten months. Thanks for coming along with us.