Intentional Parents

Last week I noticed more focused attention and resulting progress from Hannah in both her school work and her interactions with family members. My first thought was, “Oh, great, she’s getting sick.”

You see, we have noticed a pattern over the years of increased attention and interaction for two or three days, then we’ll see the runny nose. (We’ve often wondered if there is some kind of physical connection that we could discover and capitalize on, but so far haven’t been able to figure out the mystery.)

But this increase in focus has continued for a couple of weeks now, with no cold symptoms.

Another possibility has popped into my mind. We are being more careful to eliminate casein (dairy) from Hannah’s diet. In the past, we have depended more on her enzymes to counteract the effect of the casein. But then I noticed that, when given the choice, she would prefer pizza with no cheese and macaroni without the cheese sauce. So I’ve started making no-dairy versions of any meals we’ve had with cheese, and Hannah has been voluntarily eating those instead.

I wonder if the casein was affecting her more than we thought, so much so that the enzymes were not powerful enough to deal with it.

Now, it would be really easy at this point to start berating myself and send away for another Bad Mommy trophy. However, I’m trying to think of this as another step on the right track of discovering how Hannah’s body works (which is a trick when she won’t tell you how she’s feeling). And if this more complete elimination of casein helps her process her surroundings better, let’s keep going!

Hannah just read the first story in First Steps all by herself. I’m so proud of her and so thankful to our Heavenly Father for graciously allowing her to keep learning. It’s been a long journey to get to this point, and I know we’re not anywhere near the finish line. But I’m celebrating this milestone because I distinctly remember about a year ago thinking, “She’s never going to be able to read that story. We’re too far from that level.” Now, just a few months before her twelfth birthday, she did it!

It’s been a long time since I’ve read a book as Biblical, helpful, and encouraging as Laura Hendrickson’s Finding Your Child’s Way on the Autism Spectrum. Laura speaks out of an experience with her autistic son from preschool diagnosis through high school valedictorian.

Laura does an excellent job of weaving her personal experiences, Biblical principles, and practical suggestions together into short, readable chapters. She does not back away from the tougher subjects, such as “How do I discipline my autistic child?” and “What about stims?” or “How should I handle a meltdown?” In fact, the Biblical principles she presents for those subjects–always seasoned with grace–have helped to clarify my thoughts and encourage me to persevere with our autistic daughter.

I am especially thankful for her examples of discipling our special needs children, nudging them closer to Christ even when we don’t know whether they are comprehending spiritual truths.

I was convicted by chapter 8, in which Laura graciously shared what the Lord taught her through watching her son be rejected and ridiculed by others.

Recent statistics cite that 1 out of every 100 children are on the autism spectrum. To those of you who are seeking to be an intentional parent for your autistic child, or for those of you who know a parent of an autistic child, I highly recommend Finding Your Child’s Way on the Autism Spectrum by Dr. Laura Hendrickson, published by Moody Publishers.

I’m so excited! I just tried something new with Hannah, and it seems to have worked well.

First, some background information. Last year I started requiring narrations from Hannah at times. (Narrating is listening carefully then telling back in your own words.) Hannah would usually give me a one-sentence narration, worded as a question. I was quite happy with that attempt since she was just starting out.

Today I decided to encourage her to take a step further in her narrating. We got out Aesop’s Fables. She had heard a few last year, but this time we were going to use them more fully. I wanted her to narrate the fable and I would write down her narration. Then we could use that narration for copywork. I figured that we could also work on wording her sentences as statements rather than questions too.

So before we read I wrote down two key words: fox, grapes. I told her that this story was about a fox and some grapes, and I wanted her to listen closely then tell me what happened to the fox and the grapes and I would write it down.

I read the story aloud, then asked, “What happened to the fox and the grapes?” She gave me the first part of the story, worded as a question, but still the first part of the story: “Did the fox try to reach the grapes?” I tried to prompt a statement by writing “The fox tried . . . ” and she finished the sentence for me “to reach the grapes.”

That in and of itself was pretty much expected. What I didn’t expect was the rest of her narration. It seems that while I was taking time to write down each of her statements, she was taking time to formulate each of her statements. So using this method of my writing her words, she was able to put together this narration:

Did the fox try to reach the grapes?
Were they out of reach?
Did the fox walk away?
Were the grapes sour?

We reworded each sentence as a statement, but I was thrilled with the comprehensive nature of her narration. I’m thinking this idea of key words given first and time to process between each narration sentence is going to produce some great results!

On Mother’s Day, 2002, we began an unknown journey with our youngest daughter, Hannah. She was four years old and we had finally determined that she has autism. Not the grandest way to spend Mother’s Day, believe me.

I wrestled with many things over the next few years. And if you were to ask me, What are the top three words of advice you would share out of those struggles?”, here is what I would tell you: Be intentional; Do your research; Rest in God’s plan.

In the paragraphs below, I talk about living with a special needs child. You may be dealing with a parent or a spouse with special needs during this season in your life. No matter what special needs you may face, these principles would be my counsel to you.

Be Intentional

When your child is diagnosed with a special need, it’s easy to adopt a victim mentality. You feel like something that isn’t supposed to happen has happened to you, and you can’t do anything about it.

But a victim mentality is not what is best for your family or your children. So in this, as well as in other circumstances, think things through and do what will be best. Just as in other areas of parenting, we must make sure we are not operating out of a default mentality (following the crowd and mindlessly doing what everyone else is doing) or a survival mentality (recklessly doing whatever it takes to survive until the hard times suddenly go away).

You can still be an intentional parent to a special needs child. In fact, our special children need intentional parents all the more.

Do Your Research

The second piece of advice I would share is to do your research. If you don’t know about something, go read, think, and learn. Educate yourself. Dedicate yourself to learning about all the facets of your child’s situation and exploring the pros and cons to all the options you discover.

Listen to others, yes, but don’t assume they know best. Think about what they say, learn all you can, seek God’s guidance, and then do what will be most beneficial for your child.

Not everyone will understand. Not everyone will agree. But if you have done your research and prayed for wisdom, you can move forward with confidence.

Rest in God’s Plan

The third piece of advice I would share is to encourage you to rest in God’s plan for your family. During that first year after Hannah’s diagnosis, we had to severely limit our activities. We couldn’t go on field trips anymore, because Hannah couldn’t handle it. We couldn’t have company over anymore, because we were focused on Hannah’s daily therapy. There are still limits that we deal with today because of those special needs.

As moms tend to do, I began to be concerned about my other children. I began to view the special needs as a problem that was hindering them and could possibly ruin their lives. But God graciously showed me that our situation was not a mistake for any person in our family. He was still very much in control, and He had plans for the other children just as much as He had plans for me on this journey.

Over the years I’ve seen the other children grow in many beautiful ways and develop specific character traits that are a direct result of living with a special-needs sister.

So don’t fret about what the special needs or limitations are doing to the other children. God is big enough to include them in His plan. He has it all worked out. Trust Him and watch what He will do.

Encouragement for Parents

One of the hardest parts about that first year after Hannah’s diagnosis was dealing with the spiritual struggles. I could find books that recommended different therapies, and I saw several books that told other families’ stories, but I couldn’t find the encouragement that I needed to address the spiritual abyss I felt like I was in.

During that year God had orchestrated circumstances so that I was already reading through the Bible. And as I continued that schedule, He was faithful to speak to my various needs and questions through His Word. I recorded that spiritual encouragement in a journal and have made it available for other parents who may be on a similar journey: This Anguishing Blessed Journey.

Also, I’ve pulled several key points from that book and combined them into an article called “Lessons from the Valley.” You can read it free on our Web site.

Dealing with special needs is never an easy path. Yet we can rest on God’s promise that this, too, is for our good. As we walk down that path, holding tightly to His hand, we will also begin to see how it is for His glory.

We celebrated Hannah’s eleventh birthday by going to the zoo yesterday. She rarely asks for things. I don’t know whether that’s because she doesn’t think about wanting anything or just doesn’t think about expressing that wish. But when she told me a month or so ago that she would like to go to the zoo sometime, I made a mental note to try to make that wish come true. Her birthday seemed like a good time to make it happen.

Since we were going the day before her actual birthday, things were not going to follow their usual birthday routine this year. In the first place, we were going on a birthday trip and choosing one birthday present at the zoo gift shop on Friday. Then Saturday we were going to a bookstore to select more presents before the usual family supper and cake. She handled the changes quite well. She even asked whether she could decorate this afternoon for the family supper, so of course I went to the store to get streamers! And when she got a phone call that some of our family were going to have to come over on Sunday instead of Saturday night, she said, “Okay” and that was that.

We’ve been reintroducing some Brain Gym exercises this past year, trying to help her organize her thoughts. At the beginning of the year, last April, she had a very hard time with the cross-hand-marching exercise. (Imagine marching in place, touching the opposite hand to the opposite knee as it comes up — right hand to left knee, left hand to right knee, etc.) That was a very hard exercise for Hannah and required a lot of concentration. Even then, she would usually lapse into same-hand-to-same-knee motion. Last week it suddenly dawned on me that she was talking to me about something at the same time she was doing the exercise and doing it correctly.

We’ve also been working on teaching her more life skills around the house so she can contribute to the family and enjoy a sense of worthwhile accomplishment. She’s learning to load the dishwasher, wipe the counters, and sweep the floor after a meal. She’s also starting to mop. We’re still working on the details, but it’s good to see her pitching in.

One area of pitching in, in which I had a blind spot, was lunch time. Hannah has always gone to sit at her place at the table and passively wait for a plate of food to be set in front of her. Well, one of her sisters raised the expectations one day when I was gone and walked her through deciding what she wanted to eat, getting it out of the refrigerator and onto the plate, and cleaning up after herself. Later this sister kindly mentioned to me that Hannah could do those things. Of course! How silly of me!

On the academics front, Hannah is progressing from short-A three-letter words to short-I three-letter words. She is starting to understand the concept of rhyming. She can add equations with sums up to five and loves to tell time with analog clocks. She’s improving with her ability to narrate and lately has narrated to me Boy of the Pyramids, A Cricket in Times Square, and God’s World and Johnny. We’re still working on her writing skills, but the birthday messages that she copied recently were legible!

This year I plan to continue working on

• referencing faces and regulating behavior based on that referencing;
• reinforcing the idea that people may have different perspectives — both visually and mentally;
• progress in life skills and academics.

But my main desire this year is that Hannah would grow spiritually. I want to be very careful not to push or coerce her in any way, but I feel the need to increase my prayers for her in this area. Lately I have been praying Ephesians 3:14-21, and I invite you to join me in kneeling before the Father, Who is a good Father and the perfect Parent, and asking that

• He would strengthen Hannah’s inner man by His Spirit;
• Christ would dwell in her heart by faith;
• Hannah would be rooted and grounded in love;
• Hannah would be able to comprehend the love of Christ.

We look to “him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.”

We discovered a delightful little book while on a recent trip to see friends. It looked ideal for encouraging experience sharing and productive uncertainty with Hannah, so we grabbed (read that, “bought”) our own copy and brought it home.

Experience sharing is a weakness among those on the autism spectrum. Usually the only interaction autistic people participate in is in order to get something they need. One of the goals of RDI is to help them learn to enjoy simply sharing an experience with someone else, with no objective in mind other than enjoying the experience together.

Productive uncertainty is a method that we use in RDI. Most neurologically typical babies will look at the mother’s face to figure out what to do in an uncertain situation. Autistic children do not. So we try to create situations of uncertainty and spotlight those situations to encourage the child to reference someone’s face and regulate their behavior according to what they see there. It’s called “productive” uncertainty because we try not to throw things off balance so much that the child has a meltdown, just enough for the child to look for help and learn something productive from the experience.

So what was the book?

Blue Hat, Green Hat by Sandra Boynton brought lots of face referencing and giggles. Each page features some animals in various colored hats or shirts or pants. But the last animal on the page is a turkey who gets his clothing on the wrong way.

To create the uncertainty, I covered the turkey with my hand on each new page so Hannah couldn’t see his “oops” until the appropriate moment. We would read together the first few phrases, then I would stop and look at her before moving my hand.

After the first couple of pages, she started to anticipate what that little turkey would do. She would look at me with a grin; I would grin back, then uncover the turkey in his “oops” situation, and we would laugh together.

Book, $5.99. Experience sharing, priceless.

Get ready for a long post today. Hannah turned ten today, and I want to do a “then and now” comparison of how far she’s come these past six years. So here is one day in her life this week with comparisons and comments inserted.

As I write it, I am filled with gratitude to God for all He has done and a sense of hope for what else He might be pleased to do in Hannah’s life. Enjoy!

Hannah got herself up, got dressed, and played quietly while I took a shower. When I came out of the bathroom, she was sitting in my rocking chair petting our dog, Penny. She turned to me and stated, “Penny has whiskers. Whiskers starts with “w.” W-w-w-whiskers.”

As we got breakfast ready, she put Penny’s food in the dog dish and gave her the commands to sit, shake, lay down, roll over, and stay. Then released her with “OK” to eat her food.
Six years ago: Hannah had quit using and saying words that she had previously known and used. Now she talks quite a lot.

She got her cereal and helped herself to seconds at the table while we all sat chatting.
Six years ago: Hannah looked at her plate during meal times or sat with her arm over her face. Now she participates in meals.

After we finished eating, we did our Scripture Memory time as usual. Hannah does not recite with us, but she listens every morning to the verses we quote. This morning we defined the character trait Generosity: “sharing what I have with a happy spirit” and recited 2 Corinthians 9:7. When the verse ended, she asked, “Is generosity like when I share my toys?”
At the end of our breakfast time, we began to discuss where we might keep Penny when we take a two-week trip later this spring. Hannah sat for a while and then told me, “I want to bring Penny with us.”
Six years ago: Hannah was not “connected” with what was going on around her. Now she listens to conversations around her and contributes to them.

After breakfast she brushed her teeth, combed her hair (something we still need to work on!), and made her bed. Then we did her morning schoolwork.

• Reviewed the value of nickels and pennies and played “store” with some toy kittens to practice counting and combining the coins correctly (still need to work on nickels and the concept of 5s).
• Did an eye-tracking exercise to help her cross the center line visually and mentally, stimulating the sides of her brain to work together.
• Reviewed how to make a lower-case “a” and wrote several words that have “a” in them (still having trouble with “s” facing the right direction). We’re using Handwriting Without Tears.
• Read to her an A. A. Milne poem, “The King’s Breakfast,” with lovely illustrations throughout. Hannah laughed at the end.
  Six years ago: Hannah would not look at a book being read to her; played with her own book or toy instead. Now she loves our read-aloud times and often narrates to me what we read about.

While I helped her sister do schoolwork, Hannah played a computer game (Edmark’s Jungle Chess). She came to tell me that she couldn’t get the sound to work and asked me to help. We discovered that her sister had turned down the sound when she had been playing previously. So we turned the sound back up and Hannah continued playing.

A few minutes later she came back to ask when we were going to eat lunch. I told her that we would eat in a little while. So she got her toy kittens and played with them.
Six years ago: Hannah lined up blocks, books, puzzles, and toys instead of playing with them. Now she plays with toys appropriately.

As she was playing, she noticed that the fax machine was receiving some documents. She got them and handed me the faxes. I told her to give them to Daddy instead. Off she ran to deliver the papers.

When she returned, it was time for lunch. We were having leftovers, so she told me, “I want rice for lunch.”
Six years ago: Hannah would grab our hand and pull us to what she wanted, instead of verbally requesting it. Now she uses her words.

While everyone was getting their leftovers and waiting for the microwave, one sister sang a part of a Jungle Jam song. Hannah immediately chimed in with, “I like the part about . . .” and she described another part of a Jungle Jam tape.
Six years ago: Hannah said nothing just to share experiences; all communication was a request of some kind.

When she finished eating her lunch, Hannah brought a bag of cookies to the table and looked at me as she set them down to see if it was all right to have them for dessert.
Six years ago: Hannah wouldn’t look anyone in the eyes. Now she checks our eyes and faces for approval.

She asked, “Two of them?” meaning that she should take two enzymes along with her cookies. I nodded to confirm her thoughts. Then she picked up one of the inner bags, but it was still sealed shut. Her sister said, “That’s the wrong bag. Use the other one.” So she did — no problem. She had a little trouble getting the cookies out of the bag, so I helped her shake them out. Then I twisted the bag shut. She noticed what I was doing, picked up the plastic clip, looked at me, and said, “Here’s the clip.” She clipped it on while I held the bag, then she took it and put it away.
Six years ago: Hannah didn’t reference anyone’s face to gain information and she didn’t regulate her actions to work together in a coordinated fashion. Now she is learning to do both more and more.

While she was eating her cookies, I heard a “Mom, . . . Mom.” Once she had my attention she began telling me about the animal footprints on her Alaska placemat. She made up a scenario about the animals and the footprints and how the dog in the background was being chased by a cat.
Six years ago: Hannah didn’t carry on a conversation or put together her own words to communicate. Now she is making up her own stories to tell us.

We had planned to go to the store after lunch to get a few things. Hannah initially wanted to stay home from the store, but she decided to go when we mentioned that she could pick out a gift for a friend’s birthday party tonight. (Now that she is understanding the concept of receiving gifts, we’re trying to encourage the flip-side and get her excited about giving gifts too.)

She kept up with us in the parking lot and store aisles, and picked out some caramel-filled chocolates for a gift. When we got home, she helped carry in the bags from the store. By then, it was 3:00, so she asked if she could have her snack. With my permission, she got herself some raisins and peanuts — and put them away when she was done.

I then told her that it was time to do her afternoon schoolwork. Usually we do it right after lunch, but she was fine with doing it after snacks today instead. Here’s what she did:

• Worked on vowel sounds, using “hit, hat, hot” (We did them yesterday with magnetic letters; so we did them again today with the whiteboard and magnetic letters. She seems to do better with the magnetic letters than with them written on the whiteboard for some reason.)
• Wrote more words with “a” in them.
• Reviewed various ways to divide ten. She counted out ten colored tiles from a big bag full of them, then divided them into two piles and told me how many was in each pile. I wrote the numbers, and we repeated with about four different equations.
• Drew a picture of Penny’s dog pillow and kennel, complete with Penny laying on the pillow.

After schoolwork, she played a couple of computer games (Jungle Chess and Sky Island Mysteries). In the middle of Jungle Chess she came to find me and explained that her sister had turned down the sound again and would I please help her turn it back up. I did, and she was sure to say, “Thank you.”
Six years ago: Hannah would 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 she uses her time to explore, play, and interact.

One of her sisters joined her during the computer game. At one point Hannah asked this sister to move her foot since it was on the stool where Hannah had taped the background scenery for her Balto play a couple of days ago. Sister moved her foot and asked, “Is that better?” “Yes,” Hannah replied.
Six years ago: Hannah had no pretend play; she didn’t know how to pretend. Now she’s putting on whole plays from her imagination.

Our friends were due to arrive after supper for the birthday party. Hannah had time to watch Mister Rogers’ Neighborhood. When she saw which episode it was, she told her sister about one of the upcoming scenes and proceeded to imitate a character’s voice.
Six years ago: Hannah had one volume and one pitch of voice. We have worked a lot on soft/loud and high/low. Now we’re starting to see some results.

When Mr. Rogers was over, Hannah waited patiently for the birthday friends to arrive.
Six years ago: She didn’t acknowledge people coming or going around her. Now she anticipates the arrival of friends.

The rest of the evening was an opportunity to see just how much Hannah has grown to flex with real life and the changes we all encounter every day. We usually open birthday presents in the living room, but since our guests were having coffee in the dining room, I suggested that Hannah bring the presents to the table. She did so and ended up sitting in her dad’s chair in order to be near the birthday guest. Since she was sitting in Dad’s chair, Dad sat in her chair. He drew her attention to that fact in a good-natured way, and she giggled and said it was all right if he sat in her chair.

When it was time for her bedtime story, Dad volunteered to do the reading while I spent more time with our guests. Hannah agreed and enjoyed her story; then I brushed her teeth and tucked her in with prayer and some praise music playing on a CD.

Whew! That’s a lot of typing, but I wanted to give you a glimpse into our lives at this stage in the journey. We’ve come a long way. To God alone be the glory!

Of course, we still have rough days. I would consider this one to be one of Hannah’s “good” days. But God is faithful. He has provided the perseverance and strength and wisdom that you have prayed over us for these six years, and He will continue to do so for the next six years and more. We are committed to keep on keeping on, holding tightly to His hand.

Happy 10th Birthday, Hannah!