Intentional Parents

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.

Thank you for your prayers for Hannah over these last eight months. God has allowed you to be part of His great work in her life. She continues to take little steps toward re-entering “our world.”

• She calls me or one of her sisters from across the room.
• She happily runs to deliver a message to her daddy or sisters that dinner is ready (or snack time).
• She asks politely for what she wants (“May I please have . . .”).
• She picked up on saying “no, thank you” just by listening to those around her and some gentle reminders over a few weeks. We never drilled it in any of her sessions. She is integrating from her surroundings!!
• She has even picked up “umm” for some reason. She likes to say “Umm, yes, please.” (It’s so cute.)
• She can write several letters from memory and is improving on copying shapes and letters that I draw for her.

Just a couple of other anecdotes that encouraged us:

1. A couple of days ago one daughter hurt her finger. As she was (somewhat teary-eyed) showing it to an adult, Hannah turned to another sister and asked, “What did she do to her finger?” I was so thrilled that she (first) was aware of what was happening around her, and (second) used the pronouns “she” and “her” correctly! We haven’t drilled those yet (we’re still stuck on “your” and “my”).
2. Today we were driving in the van when I saw some men carrying balloons across a parking lot to afix to a sign. They were on Hannah’s side of the van, but across the street and up farther than where we were sitting at a red light. I asked, “Hannah, do you see the balloons?” and I pointed out the front window. She looked and said, “Balloons.” I thought, “She’s just repeating. Let’s check this.” So I asked her what color they were. She said, “Green”; I thought, “Lucky guess” and said, “And . . .”; she said, “Red”; I said, “And . . .”; she said, “White.” I cheered

My sister-in-law sent me an article on autism that fanned the flame to begin reading to Hannah again. I had pretty much quit reading to her over the summer because she would fight it. So now I’ve challenged the other girls to each read one book to her each day and I’ve started reading a “classic” chapter book to her at the end of our sessions. We sit in a big chair in our session room and I read a chapter aloud. The first couple of days she tried to close the book at the end of each page and said, “All done?” But I gently told her, “No, we’re not done yet” and kept going. Now she sits quietly on my lap for four or five pages of Old Mother West Wind. I’m not sure how much of it is getting through, but I figure as long as she’ll sit quietly, I’ll keep going. Last time we read a chapter about Jimmy Skunk looking for beetles for his breakfast. As we were climbing the stairs afterward, she said, “Beetles.” I said, “Yes, Jimmy Skunk was looking for beetles.” She said, “Rabbit.” I said, “Yes, he met Peter Rabbit.” She said, “Snake.” I said, “Yes, he pulled Black Snake’s tail.” So I’m encouraged that she is taking wee baby steps toward retelling a story on her own.

Please continue to pray about her counting. We’re on the 221^st time and she still doesn’t get it.

This Christmas finds us with hope in our hearts. Over the last few months we have witnessed wonderful progress in Hannah.

May 13

• No eye contact
• No pretend play
• Lined up toys instead of playing with them
• Wasn’t toilet trained, though we’d tried on several different occasions
• Screeched “no, no, no” sporadically for no apparent reason
• Took our hand and led us to what she wanted
• Laid on her bed for hours looking at one toy
• Oblivious to anyone coming or going around her
• Sat at the table with her arm over her face; ate with her fingers
• Didn’t respond when we called her name
• Only speech was echoing phrases from computer games and cassette tapes
• Was terrified of stores; wanted to be carried everywhere

December 13

• 45% to 50% eye contact with family members
• Loves to have a pretend tea party
• Plays appropriately with her toys, including singing while playing the xylophone, moving and conversing with little figures like Pooh, putting together puzzles, drawing around her fingers on a piece of paper, and more
• Daytime toilet trained
• Doesn’t screech; states what is bothering her
• Asks for what she wants (“May I please . . . – we’re working on
• Plays with various toys and interacts with her sisters
• Says “hello” and “goodbye” to those coming and going around her (with help)
• Looks at people while sitting at the table; eats with fork and spoon
• Makes eye contact when we call her name
• Is using new words every week that she picks up from her environment
• Enjoys looking around in stores; walks beside us, holding our hands

Of course, we still have a long way to go and we continue to work hard. You can pray specifically for the following skills that we’re working on.

• Counting: We’re about to start our 200th time of practicing counting, and she still can count only 3 objects by herself.
• Same/different: For some reason she’s stuck on this one. She can pretty much nail down “same” (2 identical items) but has trouble differentiating what “different” means (the 1 non-identical item).
• Pronouns: This one is tricky when we switch from receptive to expressive. Hearing the command “Touch my nose” is opposite when you ask “Whose nose is this?” (She’s to respond “your”), but it’s the same nose! (See, it’s even hard to describe in print!)
• Who, Where, When?: She’s making progress on “Who?” and we’ll be starting on Where? and When? soon.

Thank you all so much for your prayers and encouragement over these months. It means more than we can say.

Winter 2002 — Hannah is learning how to play.

Yesterday I was reading a chapter of Prince Caspian, one of the Narnia books, to one daughter. Hannah came into the room and wanted us to help her with the computer. I told her we would help after we finished reading. She decided to climb up on the bed with us and wait. She sat there for a good two or three pages. We were reading the part where Lucy wakes up, sees Aslan, and he tells her to wake the others and follow him. Lucy encounters all kinds of skepticism and sulky attitudes as she tries to wake the others and convince them that Aslan is waiting to lead them to safety. Aslan had warned her that the others would not be able to see him at first, so most of their arguments are to that point.

So, you have the picture, I’m reading aloud several pages from a story with no pictures written in C.S. Lewis’s classic style. Two sentences from the end, Hannah looked up and said, “Oh, they want to see the lion.”

Even more than an academic significance, this represents to me a spiritual reassurance that Jesus is “in there” with Hannah. I think He prompted her to say that to confirm to me that He is working in her heart and she is not alone. I have no explanation from a physical development standpoint: we’ve been working for days on giving one-sentence stories with pictures and she hasn’t even been able to answer the obvious “Who?” questions. The only explanation I can give is a spiritual miracle given from the loving hands of the Lion of Judah, the Lord Jesus Christ.

The six-month mark finds us with a nasty cold. Poor Hannah has a red moustache from wiping her nose out across her cheeks. That fact, coupled with the terrible congested cough she always gets with a cold, has suspended formal sessions for several days now.

However, it has been a time of encouragement and not regression. During these days “off,” Hannah has been using many new words and all in appropriate settings! Here is a sampling:

• I want you to fix the sheet. (She used to say “bed.”)
• Daddy is making coffee. (I’d never heard her say “coffee” before.)
• I want to go down the curly slide. (She used to say just “slide.” This time she added the description “curly.”)
• I want to play the ball game. (The other children were out in the baseball field, running the bases. She wanted to do that too. I’d never heard her say “ball game” before.)
• Time to eat breakfast. (She used to say just “time to eat.”)
• That is Mom’s Coke. (She’s always said “Mom’s juice.”)

These are words she has just picked up from her surroundings. That’s a major cause for rejoicing! That’s how most children learn to communicate. Of course, we still have far to go, but this week has shown us that we’re headed in the right direction.

As you can see, she has achieved the skill of communicating what she wants. I remember back when the consultant came out (was that six weeks ago?) that we were working very hard at getting Hannah to verbalize “I want” loud enough for us to hear. Her mumbling is decreasing, and her requests are increasing! Now we move on to shaping her requests into something a little more polite, as in “May I please . . . ?”

One area in which we would especially desire your prayers is dealing with Hannah’s increased whining and pitching fits. We were remiss in disciplining her as completely as the other three during the toddler years because we were never quite certain how much she could comprehend, and we certainly didn’t want to punish her for something she couldn’t do (as opposed to wouldn’t do). Now we are having to deal with those issues. In a way, she is going through the developmental stage that a two- or three-year-old would. She pitched her first royal fit last weekend (at a new neighbor’s house :-/  In a way, it was a step forward because she was actually verbalizing what she wanted, “I want to slide,” albeit screaming at the top of her lungs. Anyway, please pray that we will consistently and lovingly establish these missing boundaries that will make all our lives more pleasant.

One last note of encouragement: I recently found a group of Christian families who are home educating their autistic children. I’ve been on their e-mail loop only a few days now, but have already been encouraged by their Biblical counsel and prayer support. If you’re interested, you can go to www.bondingplace.com and enter the PREACCH section.

Thanks for walking with us on this journey. We have a lot to be thankful for!

Fall 2002 — Hannah tries on her sister’s hand-knitted hat and muff.

God has been working these past few weeks. We received a call from the school system (to which we had applied last spring) to set up an evaluation for Hannah. I did not have peace about pursuing that option right now. We had initially applied for help with her speech back when she wouldn’t answer any questions and we had no idea what would happen with her talking. During the three months that we were waiting on their waiting list, she progressed from complete resistance when asked direct questions to describing objects with three attributes! Based on that progress and some other factors we decided to put her file in the inactive drawer.

It seems that God confirmed that decision in two ways during this week.

1. A book that I had ordered finally arrived. It had been on back order for 6 weeks. It’s written by a home school mom who was a speech pathologist. In it she gives the basic fundamentals of doing speech therapy at home, as well as outlines when you should expect what by way of articulation accuracy.
2. We found a local ABA (the kind of therapy we’ve been doing with Hannah) consultant in the area who was willing to come observe one of our sessions and give us feedback. She turned out to be a believer and gave us some valuable insights. Over all she was encouraging and it was helpful to have her spot some places where Hannah had learned to “beat the system” in my drills while still not really learning the concept I was “teaching.” For example, we’ve been working on same and different. I didn’t realize that I was pulling all the “same” items from one bag and all the “different” items from another; plus, all the “same” items were flat, all the “different” items were bulky. She suggested I use all the flat items, so I tried that this afternoon and Hannah got 100%; then I got the idea to use all bulky items and she was totally lost. Evidently, I inadvertently taught her that “same” means “flat.” <sigh> But now that we know, we can take steps to correct it.

We had a good two-hour consultation that stretched into dinner and four hours. My mind was reeling after she left! Now we’re praying for wisdom to know which strategies to implement and how far to carry them. For instance, she recommended putting up almost all of Hannah’s toys in sight but out of reach so she has to ask for them. The goal is 1000 requests a day. We can also get her to request by giving juice only in one- or two-swallow amounts at a time or just a spoonful of pasta on her plate. You get the idea. Plus we’re supposed to not give the requested item to her unless she talks clearly and with enough volume; she has been mumbling. Sounds logical, but I’m not sure how we can carry it through consistently as well as practically. We’re taking one or two baby steps in that direction while we pray for wisdom.

So, I’m thankful God led us to her but I have to retrain my thinking again to focus on Does Hannah know this concept inside out? rather than checking the drills off my list. That seems to be a no-brainer, but I was falling into the trap of “just check it off,” just another task to accomplish on my checklist.

Once again God has brought across our path the resource person we need at just the right time. He is faithful and continues to encourage us through His Word and our pastor’s teaching. A couple of Sundays ago our pastor challenged us to think about where we were investing our lives. He asked, “What are you working for that money cannot buy and death cannot take away?” Hannah’s development cannot be bought with money, and going to the arms of the Savior through the doorway of death would only fulfill our quest by giving her a whole, complete mind. Her progress is a worthy investment of our lives. Thanks for your part in it.