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Fighting for Her Son

by Robin McDonald

Recipe for success: take one very frustrated mom and one child with a hopeless situation. Add a smidgen of determination, along with a shake of prayer. What do you get? A success story encouraging to every mother of a learning disabled child, particularly those diagnosed to be unteachable in one fashion or another.

Jana New is the creator of Phonics Boxes, a creative learning curriculum that helps children learn to read and create stories. The boxes are in demand by reading specialists and speech therapists across the country. Her business success is secondary compared to the success story of her child, Christian, who was diagnosed with apraxia six years ago. He is a walking, talking miracle and the inspiration for her curriculum.

Jana developed Phonics Boxes, along with her aunt Ilea (Ila), a retired reading specialist in Iowa. Jana doesn't just consider it a business, although the income does help finance her further homeschooling efforts. She considers it a ministry. A ministry born out of need.

It was in the midst of dealing with the tragedy of a stillbirth that Jana found herself focusing on Christian for comfort.

“Christian was only 18 months old. But he was always such a sweet baby. He would just get in bed with me and lie there with me,” she said.

“It was at that time that I really realized that Christian wasn't talking at all. He never really talked before that - a few words, mama, dada, moo for cow,” she explained. “But now I couldn't get him to say anything,” Jana continued. “I took him to the doctor for his 18 month check up and the doctor told me that Christian needed to be speaking by now. He told me I needed to get Christian into speech therapy.”

That's where God entered in and sent her help.

“A few days later Christian and I were sitting in McDonalds and a woman started talking to me,” Jana said. “She had a daughter who was three. Her daughter kept trying to talk to Christian. Finally, I told the woman that Christian wasn't speaking at all, and I didn't quite understand why.

“She told me that our county had a free speech therapy program under Mental Health Services (MHS) in the government section of the phone book.

“Money was definitely an issue,” she continued. “I had quit working and that had cut our two income salary in more than half.

“I went home that day and called MHS and they sent someone out pretty quickly for an evaluation. Christian was testing at a Kindergarten level in everything but speech,” she said.

“They took the case and started immediately. Every week a therapist would come to our home and work with Christian and me. Christian would sometimes play with her and sometimes not play with her. It really depended. But he did like it when he could play with her toys, even if he didn't want to work with her that day.

“So the therapist would let him play. Christian was very object-oriented and he liked to organize everything. He would put things from small to big in a line up. I remember with Matchbox cars that he would line them up by color. Even when the color had different shades, he would organize it by shades within the color.

“He always had to have a small toy in his hand. While playing, it would either be in his hand or right next to him so he could grab it at any time. And it wasn't always the same toy. He didn't have a favorite blanket. He didn't have a pacifier. He didn't drink a bottle. His little toy, whatever he chose for the day, was his comfort. It wasn't usually a soft little toy. It usually had texture or angles or was brightly colored. It just depended on what he needed that day.

“I knew that Christian was highly intelligent,” she said. “He was very intuitive and he was able to communicate with me in such a way that I understood just about everything that he needed. “

Jana said during this time, the speech therapist noted that Christian wasn't making much progress. Then came the disappointing diagnosis, apraxia. “She also told me he was autistic as well and that Christian would never be able to function normally,” Jana stated. “She said even in high school and as an adult I would most likely be the only one that could interpret what he spoke ... if he ever did.” Jana expressed. “She said it was probably some neurological damage that happened at birth or around that time. I asked her if she was sure. She said “yes.”

The therapist asked Jana if there was anything unusual about his birth. Jana remembered that he had stopped breathing at 10 weeks old and was hospitalized for 3-4 days. However, the hospital was befuddled over Christian's condition. (Jana related that since that time Christian has developed bad asthma and was once rushed by ambulance to the hospital, where he almost died, and then developed a history of pneumonia. “Most of the illness was while he was in daycare during his first 18 months,” she said. “I don't know if this was related but I somehow think so.”)

After the therapist left, Jana lay on her bed with Christian wrapped in her arms and cried and cried.

“What did I do wrong to create this horrible life that my son was going to have to lead?” she asked. “I thought back to all the tears shed for the baby and how that must have affected Christian more than I even realized.

“While I lay there,” Jana expressed, “I remembered a movie that I had seen once in my early teens that had rocked me to the core, even at my young age of 13 or so. It was a made for TV movie about a true story of a child with autism. The little boy would rock back and forth repeatedly for hours all day long. He would spin a plate like a top and watch it while he rocked back and forth. He would do this repeatedly.

“What I remember the most about the movie was how the parents dealt with it. They decided that they weren't going to let it be his life sentence. They decided they were going to help him by themselves. They were so patient, and they beat the odds.

“I say all this because as I lay there with Christian in my arms, I was thinking about this movie that I hadn't seen in 20 years. In some ways, I can see why Christian and I had done so well. From the time my grandparents left, I had put Christian in the swing on our swing set and pushed him back and forth for long periods. Sometimes an hour, sometimes two. I never kept track.

“But all the time I would sing him the alphabet or count to 100 or 1000. Sometimes by ones, fives, tens and hundreds. I would get a chair and just sit to the side of the swing and push back and forth. It helped me not cry so much if I was singing or reciting numbers.

“I would do this day in and day out for a long time even when I had become less traumatized by the baby's death and more aggressively active in working with Christian,” she said.

They would also read together. “We would go to the library every week and get around ten new books each time. I would read them to him over and over.”

During this time, Jana noted that the speech therapist was still coming to visit each week. She gave Christian bubbles to blow during his therapy and gave Jana a notebook with pictures and very easy short words to use with Christian. “One of the pictures was of a balloon popping,” she remembered. “The picture was of a boy and his popping balloon. So day in and day out I would go through this notebook and one day when I said “pop” he said pop.

“I remember being thrilled but not necessarily thinking that everything was all better. I was thrilled at the progress but it was going to be tough. Especially when I couldn't get him to say it again.”

Jana related that Christian was a very easy-going and loving child, but he also had his own schedule. “When he was done...he was done!” she laughed.

Jana said after that time, things started happening so quickly she couldn't keep track—it was like a switch turned on inside his head. “You couldn't understand what he was really saying unless you were the one working with him,” she added. “The therapist really emphasized that this is how he would pretty much always be and to be prepared for these speech issues.

“But thank God he was coming out of his shell, right?” she asked.

Jana never gave up, and started playing music for Christian. “Pretty soon he was singing along at his own pace,” she noted, “and I knew that he was saying the right words in his particular speech.”

After that, Christian started reading books from the library. “Again, it sounded like jumbled up speech to everyone else, but I knew that he was memorizing the story and repeating it to me. I could understand him perfectly.”

After that point, phonics started coming to the forefront. “Christian was really struggling with pronunciation. I decided that if I could work with him letter by letter, eventually he would be able to say the sound of that letter.”

This was the time that Phonics Boxes was born. “I had been to my Aunt Ila's house for a family reunion in August of 1999, so Christian had come this far in a short 6 months. He had just turned two years old.”

Jana's Aunt Ila had been a teacher. “That is about all I knew. I didn't know what grade she had taught. All I knew was that she had been retired from teaching for quite a few years by this time.

“But I also knew that Ila's house was a child's haven. She was always working with her grandkids teaching them to read and write and working with them on their spelling.”

During the reunion, Jana went downstairs to Aunt Ila's basement for some peace and quiet for Christian. “ He could only take so much of so many people,” she noted. Tucked away on one of her bookshelves “were these 60's or 70's wallpapered boxes,” she reminisced.

“The boxes were pretty crude. They had a consonant letter written on the outside of the box. Because I had been working with Christian on his consonants, I decided to look inside the box. Inside were a few little toys. Each toy started with that particular letter. I brought one of the boxes up to Ila and asked her about it.

“She told me that it helped the kids learn the letter and its sound if it had a corresponding toy. I told her it was an amazing idea and that she should market those boxes because they would be wonderful for people to have for their kids. She totally agreed, but said that she didn't have the time or the marketing knowledge to take the idea and run with it.

New, a marketing major in college, began thinking of how she could market the boxes. Aunt Ila “told me that if I wanted to do something with it I could, and we talked about doing a 50/50 split with our millions. We were just kidding of course!” Jana joked.

“Well, I went home. I took her initial idea with me with the intent of finding some little items to work with Christian. If I would find a little dog for D, I would buy it—anything little that could fit in his hand and had a solid consonant sound.

Jana played with her son for several months in this way using her Aunt Ila's idea to teach him consonants. “Christian's pronunciation was getting better and better,” Jana noted. “The speech therapist was thrilled and amazed at his progress.”

Jana had been discouraged about the speech therapist's diagnosis. “I was mad at her for a long time because I kept thinking that if I had taken to heart everything she told me about Christian, I could have just given up. Many parents probably would have.

Jana realized “that the diagnosis was a wake up call for me to take action. I don't think the therapist realized that her comments made me so angry that it just made me fight harder.” she noted.

Had Jana not taken that diagnosis to heart, “I would have kept going on with the speech therapy and probably not taken it as seriously as I needed to take it. And Christian would not be the wonderful little boy that reads on a sixth grade level and has about half of the Bible memorized—not only scripture but where that scripture is located,” she explained. Christian now speaks with absolutely no hint of a speech therapy issue at all.

His autism continued, although it was much milder than the boy in the movie Jana had remembered was. “Christian's eyes would still glaze over if I talked to him in a way that he thought was angry.” Although they had a flexible schedule, Jana noted that “every day there were certain things that were a routine. Eating, sleeping, and bathing were predictable for him. When he played with toys, before we could go on to anything else, he had to help me clean them up.”

“It really wasn't so much that I cared whether the toys were picked up,” Jana related, “It was the discipline that I wanted to get across. It was the only kind of discipline I could give him because if I raised my voice, I would lose him. This still occasionally happens. Kids do need limits—this was the best I could do without traumatizing him.”

The next summer, Jana and her family took their annual trip to Iowa. She saw her Aunt Ila and told her they needed to do something with the boxes. “She agreed and encouraged me to do something with them. Ila and I spent the next four years developing the product. We didn't work on it very often. When we ran across a toy that we saw that would be great for the boxes, we would write it down.”

In time, Aunt Ila and Jana found the gift boxes in which to place the toys, made lists of phonetically correct words for each consonant and vowel, and continued to make progress. Until finally, “last summer we came together on the floor of my grandma's house and we put together our first 11 sets,” she said. Phonics Boxes was born.

With these boxes, filled with tiny toys and treasures, Jana was encouraged to continue working with her learning challenged son. She had started a ministry and small business to help other parents teach their children in small ways, like the toys in her boxes. Jesus reminded us that if we are faithful in the little things, He knows that we will be faithful with the larger things. Jana New has seen that her undying effort to teach her son, with every small step, has reaped a large reward. Now she is using the boxes with her four-year-old daughter, Alaina.

Jana encourages parents to continue their search to help their children who have developmental issues. “If you have a child with speech therapy issues, autistic issues, reading problems, dyslexia, or PDD, do not give up ... EVER,” she said.

“And don't beat yourself up thinking that it is something that you did,” she added, “Don't assume that a totally structured environment is right for your child. All children work differently. Get into their skin—to know them is to understand them. Don't get frustrated with yourself or with your child. Don't pressure them although you shouldn’t go to the other extreme and let them do their own thing.

“Be sensible about the amount of time they can handle learning,” she concluded. For Christian, there would be days that he would let her work with him for hours, other days that he would let her work with him for only a few minutes, and other days where he wouldn't let her work with him at all.

“Working with your child does not always mean sitting on the floor with them and playing with toys. Read to your child. Swing your child on the swing. Let your child play in sand and water and dirt. Take walks with them. Laugh with them, talk with them (please - no baby talk). Talk to them about silly things or fun things or boring things.

“Just talk to them, she concluded. “ Even if it doesn't seem like they are listening.

“They are.”

To learn more about Jana New’s Phonic Boxes, visit her website at www.phonicsboxes.com.

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