Desi's Story
Always when I think of God moving I am reminded of Desi’s program. Every day He did something to show His presence and His power. So though I have many other memorial stones, I am going to write for a while about what God did for Desi.
A Promise
When my granddaughter was two years old, she was diagnosed with an autistic spectrum disorder (ASD). We had watched for months while her behavior and abilities and personality just fell apart. The child deteriorated before our eyes. She lost her language. She lost all desire to interact with us. She had horrible meltdowns where she would scream and cry whenever we touched her. She quit playing with her toys, only using them as props in front of the mirror. She became deeply unhappy and there seemed to be nothing we could do to help her.
Then came the day when our doctor suggested she might have autism. I went to the library and got on the internet. “What is autism?” I asked, “and is there anything we can do about it?” As I searched my heart grew heavier and heavier. I found that autism is a horrible condition, and one holding little to no hope. But then one site stood out to me. As I read, God spoke to my heart. I had never before and have never since heard Him so clearly. He said, “Desi will be healed.”
The Provision
Sitting in the library, on the internet, I heard Him say, “Desi will be healed.” I jerked back in shock. For long minutes I sat frozen, trying to take it in. Then I looked again to the current web page. Sonrise. I read and I understood that this was the approach God meant us to use to help Desi. I printed out some material and took it home to show Sabe.
Over the following weeks we read everything we could get about Sonrise while we waited for an actual diagnosis. Shortly after Desi’s second birthday it came: “Pervasive developmental disorder with further observation for autism.” Immediately on arriving home I called Sonrise. The cost of the training was way beyond our reach--$2000. Plus we’d need money for transportation and the building of a therapy room. But God had said to do this so we planned on doing it.
I wrote letters explaining what was happening with Desi and what we hoped to do. They hit the post office on a Saturday. “If everyone contributes five dollars,” I told Sabe, “we’ll be $500 closer to our goal.” Oh ye of little faith. On Monday we received a check for $100. Tuesday’s mail held two of them, plus one of Sabe’s coworkers gave her $20. The money continued to pour in—some through the mail, some with friends who dropped by to offer support, some through local churches, and some from a group of high school students who adopted Desi as their special concern. Within three weeks God moved people to help Desi with almost $4000.
F o u r t h o u s a n d d o l l a r s.
T h r e e w e e k s — f o u r t h o u s a n d d o l l a r s!
Able Workmen
Four thousand dollars. There was a lot to do. I researched autism, causes or triggers, and treatments. It didn’t take me long to see that had God not told me to go with Sonrise I would have used an Applied Behavioral Analysis (ABA) program. A couple of years later I wrote up Desi’s story as a case study and examined exactly why ABA would not have helped Desi and most probably would have made things worse. (ABA has changed a lot over the years and may be a more helpful approach now than it was then. I’d advise caution though.) In addition, we added a program to treat Desi’s sensory integration dysfunction—a huge part of autistic disorders. As I continued to research I also found other programs that we borrowed from to create a treatment program specifically for Desi.
Meanwhile, Desi needed a treatment room. Miracle of miracles: the house we had just purchased had an unfinished back porch that would work perfectly. My son, brother-in-law, and a friend tore off the leaking roof and replaced it with a new one. Another local church offered to send a team of men to install structures to support necessary equipment and to drywall. They were working hard when I left to attend the Sonrise training. I returned shortly before Christmas and set New Year’s Day as the day Desi and I would begin working. Seth, a good friend, helped me paint Christmas night. The carpet was installed the day after Christmas and on New Year’s Eve, Jack—another good friend—and I installed cabinets. New Year’s Day Desi and I entered her “playroom” for the first time. We met our goal of having a good time together—in fact, Desi cried when we left the room.
Later that day I stuffed envelopes. We wanted to thank people for their help and update them on what had been accomplished so far. We also wanted to ask for volunteers to work with Desi. Our goal was for her to be in her therapy room all day, every day. As I put the letters in the envelopes I prayed. I asked God to give us the help we needed for Desi and I also asked Him if maybe someone could help me with all the things I needed to do that weren’t part of the program. I spent up to sixteen hours a day working on Desi’s program which left time for little else. Since Sabe was working two jobs and going to school she had very little time to shop, fix meals, or do housework. The house was suffering and so were we. But even as I prayed the phone rang. It was our dear friend Phyllis. “I want to do something to help. But I wouldn’t feel comfortable working with Desi. Would you like me to help with your housework? I could do the laundry, clean the house, maybe fix a meal here and there. Would you be interested in that at all?”
♪ Praise God from whom all blessings flow. Praise Him all creatures here below. Praise above ye heavenly host. Praise Father, Son and Holy Ghost. Amen. ♫
An Overflowing Cup
Each day Sabe and I took Desi into the playroom for an hour or two. We didn’t get much more time as Sabe was still doing the whole work-school-work thing and I was working on recruiting volunteers, writing a training manual, and finishing equipment for the playroom. In addition, working with Desi required a great deal of energy—it was draining. In the playroom the adult was completely focused on Desi for three reasons. First we were trying to understand why she did what she did so that we could offer the correct treatment. Second, we were listening to what passed as words for her. We wanted to encourage her attempts to communicate by understanding what she said and responding appropriately. Finally, we were completely focused on Desi because with the support of our minds, she was able to stay with us and learn. (I know this sounds a little off the wall but there is solid reasoning behind it.)
On top of staying focused on Desi we were working hard to provide other aspects of therapy. We treated her sensory integrative dysfunction, which required us to entice Desi into using the equipment since treatment is only effective if the child wants to perform the activities. We worked very hard to engage her. This required joining her in whatever she was doing and gently inserting ourselves into her activities. Oh there were myriads of things to understand and to do with Desi while all the while keeping your mind completely on her. It was hard work.
But this work paid off. Every time she left the playroom, Desi tantrummed. She really liked being in there—hooray! Plus, we immediately saw improvements in many areas. Twice in the first three days Desi hugged me. Maybe you need to understand just how dysfunctional she was—her hugs meant that not only was she aware I was there, but she was happy and wanted to share that with me, and had the necessary motor planning to carry it out. Amazing stuff!
We also saw amazing progress in language. When she was about a year old Desi used twelve words. By the time she was eighteen months those words were gone. She had quit talking. Shortly before Desi was diagnosed, Sabe decided to try sign language with her. Soon Desi had a vocabulary of five words. But five was the limit—if she gained a new word she lost an old one. For example, when she started saying “down” she quit saying “up.” This was the situation when we entered the playroom. But as we worked with her, she started repeating words we used. Soon she was using these words without prompting. After twelve days of therapy, Desi’s vocabulary was ninety words.
From five words to ninety in twelve days.
Every day God handed us a cup overflowing with joy. Every day I cried as I drank it.
The Heartsongs
I worked hard recruiting volunteers and our first introductory meeting was January 20th. All the women who would volunteer with Desi were just great. (She also had one male volunteer—her Uncle Niel—and he was great too.) We gave them a lot of information at the first meeting then a short training item each time they came. As the volunteers worked with Desi, I worked on the training manual and other program-related projects. I would simultaneously watch the sessions via a security camera we set up in the therapy room. I tried to keep notes of what was happening so I have nice documentation of Desi’s program. Here’s how one Monday in January went:
I spent two hours in the playroom. Desi said part of a poem from Goodnight Moon. She also put an adjective with a noun for the first time when she said “purple ball.” Vicki came for an hour. Desi recognized and named most of the numbers in her number puzzle. Cheryl also spent an hour with her. Desi jabbered something about the kite and the butterfly “fly up in the sky.”
The entire day was a high for me. The volunteers were wonderful. Desi said so many new words, and was trying to speak in sentences. I was giddy with joy.
Late that afternoon we went to the grocery store. As soon as we walked through the automatic doors, Desi threw herself on the floor crying. I stood calmly beside her, refusing to be embarrassed, knowing she needed me to be calm more than anything. After a few minutes she calmed down and we did our shopping without another incident.
When we arrived home I got the bags in the kitchen door, then headed for the stove to start supper. As I worked Desi explored the bags of groceries.
“Tomatoes,” she announced. I swung around to find her holding a can.
“Yes, that’s a can of tomatoes.” My calm reply belied the joy surging through me. 'She recognizes tomatoes! Oh thank you God, thank you!' As the tears started falling the back door opened and Niel and Kelly walked in.
“You’ll never believe what Desi just did!” I blurted in a tight, shaky voice. My simultaneous tears and laughter made me nearly incoherent. “She said tomatoes! She was holding a can of tomatoes. How did she do that? We haven’t taught her tomatoes.”
“She can read!” Kelly exclaimed.
Her joke brought me down enough to talk sensibly. “Seriously, how did she know they were tomatoes? Was she learning even when she was tuned out? Or does she remember stuff from when she was a baby?”
“Are you sure no one said it to her?” Kelly asked.
“No. I’m watching all the time. No one has said tomatoes.”
It’s a mystery, Mom,” Niel said dryly.
“It’s another miracle,” I replied.
Soon Sabe and Katie arrived home with friends following close behind. After supper I retreated to my room to work on the training manual while the other adults settled in to play Phase Ten.
I was deeply engrossed in my writing when something niggled at my attention. I tried to push it away but could no longer concentrate. As I straightened up to listen I recognized Desi’s voice. She was naming colors. She was not in the playroom but in the dining room. Puzzled, I came out to investigate. I found the adults gathered around the table intent on their card game. Desi was going from person to person naming the colors of their cards. For the umpteenth time that day my heart did a staccato beat.
“Saaabe,” I question, “do you hear what Desi’s doing?”
“No, what?”
“She’s naming colors and she’s not in the playroom. She’s generalized the color names. Kids with autism aren’t supposed to be able to do that.”
“What do you mean?”
“Supposedly you have to teach them things in different places in order for them to know it in that place. Desi has generalized color names from her playroom to your cards.”
“Wow. That’s pretty awesome.”
“Yeah.” I caught Desi as she moved past me and gave her a big hug. Again my face was wet with tears. “I love you sweetheart. You are so smart.” I covered her face with kisses before she wiggled away to continue her observation of colors.
♪ There’s within my heart a melody. . . ♫
Miracle After Miracle
Day after day. Miracle after miracle. Soon she looked at us when we called her name, followed a pointing finger, and could “give this to Mama” (or Katie or Grandma). Her hands were no longer as sensitive—she pulled out her chair and used silverware to eat. She was into everything. For so long she’d had no interest in her surroundings but suddenly no drawer or cupboard was exempt from her curiosity.
The volunteers were wonderful. In the playroom Cheryl was excited and happy. Using the puppets she asked Desi, “What is your name?” Desi replied “I Dedi.” Niel brought out her confidence in her body. She flew across the balance beam with him. The second time Vicki came, Desi grabbed her as she walked through the door and pulled her into the playroom. Kelly was sweet and loving with her. I was thrilled with all of them. And they all loved Desi. Everyone was amazed at her progress, even those who had only known her a few days.
When in the playroom Desi was a hard-working, fast-learning, funny, sweet little angel. I had so much respect for her. She worked hard and was so persistent. I was amazed at the lengths she would go to learn or accomplish something.
I used the word “miracle” because it was. God was so good and we were so thankful. Sometimes I had a hard time believing it was really happening. God had given me the belief that Desi would overcome her autism, but I’d never in my wildest dreams imagined it would happen so quickly.
By February she could identify number. She learned to sing Happy Birthday for her mom’s birthday. She used pronouns, referred to herself by name, and spoke in short sentences including “help you me please.” She played with toys—actually used them to play. She greeted people at the door with “hi” or “hello.” One evening she was in another room when I heard her singing the Barney “I Love You” song to herself. She sang all the words and many of them I could understand. My eyes teared up because she was singing from happiness!
Her eye contact got better and better. She began to pretend. Her vocabulary hit 130 words. At breakfast one morning she said, “Mama, where are you?” When Sabe entered the room Desi said, “Boo!” Another morning she went in the kitchen for breakfast and Sabe heard her thinking aloud: “Playroom? No. Cookies house.” She was thinking about whether she wanted to get something to eat from the playroom, but decided she’d rather have cookies which were in the house. (She had to eat cereal.)
Finally, probably the biggest indicator of her progress came the evening Sabe, Kelly, and I went to Motor Inn to have time to make some decisions. Mya, one of Desi’s volunteers, watched the girls. When we got home we learned Desi had cried for us for a half hour straight. It had never entered our minds that she might get upset as she never had before. She didn’t care who was with her, or even if anyone was. But we hadn’t left her since her program started. She was so much more aware and she wanted her mama or grandma. She looked for us and missed us. Wow.
Day after day. Miracle after miracle. More words. Complete sentences. Heightened awareness. Learning. Play. By May we didn’t know what to do for her anymore. We thanked her volunteers and no longer worked with her. She attended daycare at Kelly’s and played with the other children. That fall we enrolled her in a small preschool class where she got along fine. The next spring her neurologist removed her diagnosis, saying, "You couldn't ask for a more normal little girl."
As Desi grew we explained to her about autism and her program and all the people who worked with her and about God healing her. She’s long been a very appreciative person and she occasionally shares how thankful she is about all of it. So now another voice raises with ours in thanking God for all His blessings—day after day—miracle after miracle.
