Intentional Parents

I opened the door to Hannah’s bedroom this morning to see her sitting on the floor with several books lined up beside her. And my heart skipped a beat. An image from four years ago instantly flashed across my mind — the image of Hannah lining up all her books and toys instead of playing with them or looking at them like neurologically-typical children do. I immediately began to fish around for possible causes of her regression. Had our recent trip to Florida been too much for her? We returned on Thursday and on Saturday an aunt had arrived for a stay. Had the combination been too much for her and pushed her back into her old “secure” ways?

All of these thoughts flitted across my brain in just a second or two as I stood in the doorway. Then Hannah looked up at me and, with a little smile, started to explain how this was a library, and how one of the toy dogs sitting beside her had picked out this book and the other dog had picked out that book, pointing to the appropriate books in the line-up on the floor, and how she was “reading” the books to the dogs.

She wasn’t regressing; she was pretending! And more than that, she was pretending after a huge change in her surroundings and schedule! Vacations have always been a challenge, especially the first few days back after her secure routine has been in a continual state of upheaval in a different location. But this year she did better than ever on our trip, and I was so thankful to see those books lined up on the floor this morning!

Just thought you’d like to share in the moment!

On this Mother’s Day, 2006, I wanted to take a look backward at how far we’ve come and a look forward at the road ahead, for it was Mother’s Day, 2002, when we started on this journey with Hannah.

May 2006: Playing with a prop for her sisters’ movie: iSundae.

First, how far we’ve come. Here is a description of Hannah’s behavior just after her fourth birthday when we started this journey, contrasted with her behavior now, four years later.

Then: Lack of eye contact; she wouldn’t look anyone in the eyes.

Now: Good eye contact when she wants to; still sometimes hesitant with those outside the family circle.

Then: Played in her own little world; not “connected” with what was going on around her.

Now: Comments on conversations and activities going on around her. For example, when driving in the van recently, I told the girls about a woman who had fallen off a ladder and broken her hip. Hannah immediately piped up and asked, “Is she all right?”

Then: Lay on her bed for hours looking at a toy; not playing with it in the usual sense, just turning it over and over and looking at it.

Now: Plays appropriately with a wide variety of toys.

Then: No pretend play; didn’t know how to pretend.

Now: Likes to pretend play with her sister. Likes to pretend that she is an animal of some kind (to the point that sometimes she gets upset if we call her Hannah instead of the animal’s name that she is pretending to be).

Then: Didn’t acknowledge people coming or going around her.

Now: Announces when Daddy’s or some friends’ vehicle pulls into the driveway, which she can see from the window in her room.

Then: Quit using and saying words that she had previously known and used.

Now: Vocabulary increasing again.

Then: Didn’t carry on a conversation or put together her own words to communicate. Instead she would recite lines from computer programs and music cassette tapes, sometimes at applicable moments, most often just “out of the blue” and not on topic. (The technical term is “delayed echolalia.”)

Now: Sometimes gets stuck asking questions to get answers that she already knows, but uses her own words to put together her own sentences that are usually on topic. Still struggles sometimes to get the word from her brain to her mouth, but will repeat the introductory phrase until she breaks through that wall and the word comes out, then she finishes her sentence.

Then: Lined up blocks, books, puzzles, and toys instead of playing with them.

Now: Builds elaborate houses with blocks; looks at books; puts together puzzles; acts out little people and stuffed animals.

Then: Would not look at a book being read to her; played with her own book or toy instead.

Now: Pays close attention to books being read to her and asks questions about what’s going on; follows the story line in chapter books read aloud to her. We’re reading through the Little House books and are currently on “The Long Winter.” Sometimes she’ll focus on one insignificant detail, but at least she is processing auditorially.

Then: Would not point to anything.

Now: Taps us on the shoulder and points to what she wants us to see; then looks back at our faces to make sure we’re looking at it.

Then: Would not look at something we pointed to; looked at our finger instead.

Now: Follows our finger to focus on the object in the distance that we’re pointing at.

Then: Would have sporadic outbursts of yelling “no, no, no” for unknown reasons, not just when challenged but in the middle of playing by herself.

Now: No outbursts. She is learning self-control. Sometimes we have tears when challenged, but she is becoming better at moving forward past the tears and on to the next thing.

Then: Would stand still for hugs, but not open her arms to return them.

Now: Still needs to be reminded to use her arms for hugs.

Then: Looked at her plate during meal times or sat with her arm over her face.

Now: Eats at her place. Passes objects within her reach when they are requested. Sometimes participates in the conversation.

Then: Would grab our hand and pull us to what she wanted, instead of verbally requesting it.

Now: Verbally requests what she wants throughout the day. However, sometimes at the table she will sit with the garlic salt beside her plate, waiting for someone to notice and help her sprinkle it.

Then: Would repeat a sequence continually in playing. For example, jump off the step, touch the table, put the stuffed animal under the chair, take the stuffed animal out from under the chair, return to the step; jump off the step, touch the table, etc.

Now: Routines are decreasing and we’ve had some interesting conversations about what constitutes a routine that needs to be changed versus a good routine.

Then: Was fascinated with lights and ceiling fans; she would stare at them for several minutes at a time.

Now: Hasn’t demonstrated this obsession in a long time. Does, however, laugh with joy over sudden loud noises. We’re curious . . .

Then: Entranced with fire. (She was singing for several days “Happy Birthday to you, now blow out the candles.” At her fourth birthday, she sat staring at the flames and wouldn’t respond to our encouragement to blow out the candles. After the flames were extinguished, she returned to singing and reciting the phrases.)

Now: Eagerly participates in birthdays and holidays. Hasn’t yet mastered the art of blowing but enjoys the whole tradition.

Then: Used a high-pitched voice to resist when challenged.

Now: Uses the high-pitched voice only when acting out little characters in play. Still needs to work on inflection and volume.

We are so thankful to God for every inch of progress He has graciously granted Hannah. Now, a look at the road ahead: the work still to be done prayerfully and persistently. Here are the goals we are currently working on.

• Aware of effect on communication when out of sight or too far away (She can squeal quite loudly when excited, but won’t raise her voice in a crowded room so we can hear what she’s saying.)
• Accurately expresses and shares expressions of happiness, anger, sadness, and fear (She can recognize all four in photos, but not in herself or other real people in real situations that prompt those feelings.)
• Recognizes and responds in a sensitive manner when social partners express feelings (Laughter still tends to be her first response when a person gets hurt.)
• Appreciates humor used in a non-scripted manner (Thanks to John, she is progressing in this goal!)
• Synchronizes with partner (She synchronizes to a degree when playing with Sarah, but we still need to work on this one.)

Please pray that we will not grow weary in well-doing and that we will have the wisdom to know when to push and when to back off.

Tomorrow is Hannah’s birthday. She will turn eight years old! Somehow it’s harder for me to wrap my mind around “eight” than it was “seven” last year. “Eight” seems so “big girl”-ish. We’re thinking she’s progressed to about three years old socially. The “why”s are continuing, but she’s getting more sophisticated in her interaction with her sisters:

Hannah - “Can you play with me?”

Sister - “I can’t right now.”

Hannah - “Why?”

Sister - “I have to finish my school work.”

Hannah - “Then can you play with me?”

OR

Hannah - “I thought we could play together.”

Sister - “Not right now.”

Hannah - “Why?”

Sister - “I’m reading a book.”

Hannah - “Will you play with me at 2:00?”

Sister - “We’ll see then.”

Hannah - “I thought we could play together.”

Her latest fascination is with stains. She spots them (no pun intended) and points them out everywhere and on everything. She seems to be able to handle the fact that some stains won’t come out, however, which is a big step in the right direction.

I would appreciate your prayers as I try a new idea this week. We’ve read the story of Jesus’ life, death, and resurrection many times, but she doesn’t seem to grasp the salvation message yet. A couple of weeks ago the idea came to me that she might “connect” with a Wordless Book. Hannah is always quite focused on colors and remembers them vividly. Words are more confusing. So last night I put together a Wordless Book out of construction paper, and I’m planning to show her one colored page each day and tell her briefly what it reminds us of.

This morning I showed her the first page: a piece of brown construction paper with a big black stain spot on it. I told her that the black stain (remember, she’s into stains right now) reminds us of the wrong things we do. I gave her a couple of examples of wrong things she had done, and her head started to bow. Then I told her that we all do wrong things; they’re called “sin.” And I assured her that tomorrow we would talk about a way to get rid of the sin. Hmmm, maybe we’ll need to do both the red and white pages tomorrow. We’ll see.

Some of you are aware that I ended up making an unexpected trip to the hospital in the middle of the night a couple of weeks ago. It was tough for Hannah to wake up and find Mommy gone for a few days, but she has settled back in now that I’m home. The girls have been such a help during this recovery from my surgery, and this week I’m feeling strong enough to take over Hannah’s school work again.

Thanks for your prayers for my recovery and Hannah’s salvation!

I’m so excited, I just had to drop y’all a quick note to tell you that Hannah has started spontaneously rhyming! Every once in a while over the past few weeks she’ll latch onto a word we use (or she uses) in a conversation and say it along with a word that rhymes with it. For example, just now when we were changing sheets, she told me she wanted to put Pooh sheets on her bed. Then she said, “Pooh, Roo; that rhymes.”

Hurrah! Another baby step toward reading!

Check back here regularly to read more reports as we continue on this journey with Hannah.

Each dog sporting its beginning-sound letter.

Number Two daughter just came up from Hannah’s school room to tell me that Hannah lined up her collection of toy dogs and put a magnetic letter by each one. The letters corresponded to the dogs’ names: P for Pepper, S for Salt, F for Fifi, M for Mimi, and J for Jake.

The best part is that daughter Number Two just walked in, discovered the scene, and ran for the camera. Hannah decided to play with the letters and figured out the dogs’ beginning sounds all on her own!

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.