Monday, November 20, 2006

A Heart like Mine

“David, No! Put that down!” What seemed like the hundredth time that day, the tired and exasperated mother raised her voice at her little boy, trying very hard not to lose her temper.

Jeanine sighed as she remembered all the other times when she had been too harsh and would reduce herself and David to tears. She was thankful that today was not one of those times. She loved this little boy so much, but many times felt that nothing would get through to him. She prayed throughout each day and pleaded with God each night to show her how to be a good mommy to her son. She would beg God to help him communicate better. Most nights, she wept while she tried to pray with him and would hold him for as long as she could. This seemed to help after a long day of feeling like a failure.

When Jeanine discovered that she was pregnant, she felt so happy about this new life she was carrying, but was worried because this baby was coming a lot sooner than she or her husband had planned. Their first child, Elizabeth, was still a baby herself. When their family and friends found out, they received a variety of responses. Anywhere from “Wow, that’s great! Congratulations!” to “What? Already? Don’t you know what causes that?” Some reactions were even harder to accept like, “Oh No! How are you going to do it?” One reaction was complete silence and then the subject was quickly changed. This was especially hurtful even though it wasn’t meant to be. All she wanted was a little encouragement, but Jeanine made up her mind to ignore the thoughtless comments and thanked God that she was allowed the privilege of raising another child.

Throughout the pregnancy, Jeanine took care of herself and the baby like she had done with her first child, being careful what she ate and choosing natural remedies when she was sick. She wondered what this child would be like and prayed for the baby every day. And, then, her time came.

She was putting Elizabeth to bed when things started happening. Since her first labour was extremely long, she figured she had plenty of time to relax at home and get things together. She and her husband had arranged for a friend to stay with their daughter until his family arrived. Her contractions started getting much stronger, but seeing her daughter’s toys everywhere, she decided to crawl on the living room floor and put things away. The last thing she wanted was to have anyone trip in the middle of the night! Finally, Jeanine was satisfied with the room, even though it took her longer than usual to put away a few toys and she walked between contractions to the front door.

The car ride was not easy as she was entering transition, but she managed to arrive at the hospital, check in and get settled in her room before the real fun began. The baby was born 2 hours later and was a beautiful healthy little boy. Everyone had tears of joy and the new mommy held and nursed her precious child. Sometime after the birth, Jeanine hemorrhaged. The doctors and nurses acted swiftly and the situation was soon resolved, but she was shaken and completely worn out.

The next night as Jeanine was getting ready to put little David in the hospital bassinet beside her, she felt him jerk and the next thing she knew, her baby had fallen to the floor. Her husband had been sleeping in the room, but awoke with a start to help her. She was too fragile to hold her baby any tighter, too tired to prevent his fall, and too weak to jump out of bed to pick up her son. What kind of mother would let her baby fall from her arms? “Oh, God, I’m so sorry! Please take care of my baby,” she prayed. The baby was taken to the intensive care as a precaution and the doctors found that he was just fine. Naturally, he was not happy about his first adventure with gravity, but he seemed okay. The parents were both relieved, but not so many years later, this occurrence would come back to torment her.

David grew and grew. The parents enjoyed their little boy with the unending rolls of baby fat. He cooed and grinned and was a very happy and strong little boy. He reached his physical milestones like crawling and walking with baby like determination. Elizabeth loved him and the two became sweet friends. Jeanine loved having her little girl and boy so close together, even if it meant that she got nothing else done during the day. There were many days that all she did was nurse, diaper, bathe and hold her little children. She would wash the dishes and clothes that the family needed as she could and they managed to eat and sleep some of the time.

David suffered from eczema some time after his first year and it became serious enough that the parents took him to see a dermatologist to try to get some answers. They experimented by taking certain things out of the mother’s and the baby’s diets and just tried to soothe his itching as they could. His foot bothered him the most and they had to keep it wrapped in gauze and medical tape to keep him from scratching. Jeanine would catch him rubbing his foot against the carpet so much that he looked like he was starting a motorcycle. He was a determined little boy and was able to rub off the bandages in no time, even in the middle of the night. Then, Jeanine and her husband took turns washing, medicating and wrapping that little foot all over again.

As the days went by, Jeanine noticed that David did not babble as much as his older sister did at his age. He didn’t really point to the things he wanted. He didn’t sit for stories like his older sister. But, she tried not to be worried. This was a different child. He was a boy, for one thing. He was much more interested in seeing how things moved and how they were put together that he didn’t have a need to talk about it. Certain sounds upset him, like the vacuum cleaner and the coffee grinder, but he later outgrew his fears and got used to the sounds. He was sensitive to other things, as well. Backing up in the car or sitting at a red light really bothered him. He also was not comfortable with change. He liked routine.

One day, the parents and children were visiting relatives and their family asked if they could talk with them. They had listened to a Christian radio show that week about autism spectrum disorder and wondered if they had heard about it. Then they explained why David probably had the disorder. A flood of thoughts came to Jeanine’s mind. Thoughts like, “How dare you diagnose my son!” And, “Of course, I know what autism is!” Her sister, Kristyne was a music therapist who worked with autistic children and even Jeanine had worked with these children from time to time as a substitute teacher. Jeanine and her husband tried to refute what the relatives were saying without being unkind, but they were understandably hurt. And, for a long time after this incident, they could not speak about the subject with them. Over time, their relatives decided to hold their tongues and began to show more understanding and compassion. They soon became some of David's most supportive advocates.

If it wasn’t family offering their advice or diagnoses, it was friends. Everyone sincerely wanted to help, but it was hard to take at times. Some suggested having David’s hearing checked. Jeanine and her husband had thought of this, too, but knew he didn’t have a problem with his hearing. But, eventually, they took him to an audiologist and were not surprised to find that his hearing was normal.

The parents did research the topic of autism further and still believed that David was not autistic. If he indeed was, they would still love him, but they felt that there had to be another explanation for his delays and sensitivities. Since they made the decision to home school long before their children were born, they wanted to be very careful who became involved in their son’s life. This made it more challenging to know where to turn if they needed extra help with him. They had no desire to search for special schools to enroll him. They prayed even more fervently than ever that God would show them what they needed to do.

Jeanine prayed for a special love for this child because as hard as it was to admit, there were days she felt she couldn’t love him the way she should. Every day was stressful, as Jeanine tried to communicate with her son. She was physically and emotionally drained by the end of each day. It was exhausting just trying to understand what David wanted or needed. With the lack of communication, came behavioral problems. Like any child, he could be naughty and would want his own way, but he was extremely irritated when no one could understand him. More times than Jeanine wanted to remember were the days that she and her son would stand at the closet where the games were kept as he tried to tell her what he wanted to play or what he wanted to eat when it was mealtime, David’s words were unintelligible or non-existent. A broken toy or a puzzle that didn’t fit the way he wanted it to would send David into a panic. Crying and screaming would soon follow.

How much could David understand? No one really knew. Sometimes, it seemed like he totally understood and other times not at all. David did not answer yes or no questions. He didn’t tell people his name or age or how he felt about anything. Jeanine longed to talk about God with him. She talked and sang about the Lord everyday, but could not tell what was going on in his little mind.

Going places without her husband’s help were particularly difficult occasions. No one knew what she was going through. Jeanine would tire easily of people giving her looks of frustration when her son would not respond the way they expected. David’s big sister would say, “That’s my brother, David. He doesn’t understand”. This was her way of protecting him from kids that would give him a hard time. Jeanine began to avoid field trips with her home school support group because David would act out and did not have much of an attention span for the different places they would go. She compared the other children to her son and felt that all eyes were on her…the mother who couldn’t control her child!

Even when David was a little older, Jeanine was still putting up with the opinions of others. On a recent vacation to Florida, Jeanine took the children to the beach and for some reason, David was terrified. Jeanine didn’t know if he was scared of the waves or the sand or something else. It was his first time to the ocean, so it was probably a little overwhelming. Whatever the reason, he could not be consoled. A very nosy stranger approached and assuming that Jeanine was his babysitter asked if he was retarded! Jeanine tried so hard not to let this bother her, but she blurted out, “I’m his mother! My son has some delays, but he’s not retarded!” When David did fine the next day at the beach, she wanted so much to find that insensitive busybody and show her how normal and sweet her son really was.

The stress from raising a child like David took its toll on his parents’ marriage. Her husband’s being out of work and having financial problems did not help the situation. They didn’t realize just how much tension had built up between them. They argued. They kept their feelings to themselves. Jeanine felt that her husband did not want to be involved or didn’t see a need for outside help. She felt alone and confused. There was even a time that Jeanine wanted to leave and find comfort elsewhere.

Jeanine had begun to have feelings of guilt. “Maybe if I hadn’t dropped him as an infant! I’m not consistent with him. I’m not spending quality time with him that he needs! I feel like I’m just surviving every day. It’s probably my fault that David struggles so much”. On especially difficult days, she became overwhelmed by self-pity. “Why couldn’t I just have a normal little boy, God? I don’t know how to be a good mommy to him. When is he ever going to change?” Then, all she had to do was look across the street and remember her neighbors who lost their little boy or the other family on her street whose two children had a terminal skin disease. They had to change their bandages morning and night and did not know how long their kids would live. Jeanine definitely could not forget the boy her son was named for. He suffered from brain tumors and eventually died at the age of 16. More guilty feelings would result. She shared these feelings with her friend Kim and was encouraged when she told her not to be so hard on herself. “No one goes through exactly what you go through.” It was not profitable to compare her situation with anyone else. It was at these times, God would gently remind her that He was faithful, that He loved her. He loved David, too and He would walk them through the rough times.

Her husband felt guilty for the times he was too harsh with his son. He did not know how to relate with David. He felt guilty for not knowing how to help more. They both felt guilty for the times that David was ignored by them or others who couldn’t understand him. They felt guilty for forgetting that he had feelings. They had a hard time forgiving themselves for failing him. They also had difficulty accepting God’s plan in giving them a son like David.

And, how was their first child dealing with all of this? Elizabeth was expected to behave all of the time. She got yelled at for things that weren’t her fault or would act out in unexpected ways to get attention. And, perhaps, she too was sad that she couldn’t communicate with her little brother.

By the time David was three; he was pointing to objects and people and began to speak. He seemed more interested in the world around him and began to repeat the words that mommy taught him. On one particular day, Jeanine was able to take a walk alone with David and he pointed to everything he saw. “That’s a tree. That’s a flower. Look at the ladybug”. Then, David would repeat the words the best he could. “Twee, fwoer, wadybug”. Jeanine was thrilled that he finally was learning words. David started repeating everything that was said after awhile. This could get tiring, but Jeanine tried to use every repeated word as a teaching moment. Soon, David repeated lines and phrases from videos he liked to watch. He used them in appropriate situations some of the time and actually enjoyed saying the funny lines from his favorite shows, but more frequently he would just say them for no apparent reason. Maybe this was a way to cope with his loneliness.

Jeanine worked on David’s pronunciation as she could. “David, show me your tongue. Now say, la la la la”, emphasizing the l’s. “Okay, say la…eet. Laeet. Light!” David made progress, but Jeanine knew she shouldn’t push him too hard. The words Jeanine wanted to hear more than anything in the world, she wouldn’t hear for a little while yet. She thought that maybe she was being selfish, but all she wanted to hear was, “I love you Mommy!” It would come. He just needed time. And, then, one night, Jeanine turned out David’s light and told him that she loved him. The next sounds she heard were spoken by that dear little voice, “I wuv you, too Mommy!” She cried happy tears and ran to give him one last hug before he went to sleep.

Eye contact with her son was sporadic. When he wanted to, David would look at his mother, but then there were those instances that he refused to look into her eyes. He was easily distracted and sometimes just plain stubborn. “David, where are Mommy’s eyes? Look into Mommy’s eyes!” She tried everything to make him look at her. Jeanine pointed to her eyes and placed her hands on his face and finally, he would look.

Another baby had arrived by this time, a little sister. Jeanine was relieved that it was a girl. She didn’t want another boy yet. She was so afraid that a little brother would pass him up. David loved his little sister, too and his vocabulary expanded. He started to play with his sisters more than before. He liked books now and even learned how to play games on the computer!

Jeanine recognized some wonderful things about her little boy. David had an enormous capacity to love others. He accepted people for who they were. He had a very tender heart. He was full of joy and he loved life.

Jeanine continued to pray for patience and understanding. She prayed for direction and one day, she talked to a friend who knew of another home school mom that happened to be a speech therapist. Jeanine contacted her, but the therapist did not have any openings. She did refer Jeanine to another therapist who agreed to meet with her and her husband. She visited David a few times and wrote an evaluation about him, stating that he had speech and language delay. She did not feel equipped to continue sessions, so she directed them to the local MR/DD in their county. Jeanine was a bit nervous about pursuing this avenue, but they finally had a peace that it was the direction they should take. They met with a case manager and began the slow process of searching for another speech therapist.

In the meantime, Jeanine learned that there was a center that offered testing and diagnoses for children, so she spoke with a professional there. After learning about all that was involved with the test, she and her husband decided against it. Jeanine and her husband did not want David to be examined like a bug under a microscope. There was a very long waiting period just to be seen. It was very expensive and would last a whole day. David would be evaluated by a pediatrician, an audiologist, a speech therapist, a physical therapist, a child psychologist and a psychiatrist. Jeanine would spend most of the time with the psychiatrist which amused her. She thought, “Well, of course, I’d spend most of the time with him! Anyone would go loony after all of that!”

Within six months, God directed them to a wonderful Christian speech therapist. She began working with David once a week and shared ideas with Jeanine in how to talk with him. The therapist said that David had auditory processing difficulties. This explained the speech delays, the behavioral problems, and the failure to understand oral directions. He had to be shown what to do.

David improved immensely during the next several weeks and months. He was able to follow directions and talk about his feelings. He could engage in conversation and pretend play with his sisters and his parents. Since he had auditory difficulties, Jeanine and her husband recognized his incredible visual strengths. He could put things together, coordinate colors and work mazes with ease. His determination to persevere was another strong point.

His attention span lengthened and he listened to good books. “Hermie, a Common Caterpillar” by Max Lucado was one of David’s favorite books. It tells of a little caterpillar who did not feel special. He didn’t have stripes or spots. He couldn’t fly like the butterfly. He wasn’t strong like the ant. He didn’t have a cool house like the snail. He wasn’t beautiful like the ladybug. He was just plain old Hermie. Every night, Hermie talked to God and asked Him why he was so common and every night God said, “Don’t worry. I love you just the way you are, but I’m not finished with you yet. I’m giving you a heart like Mine.” At the end of the book, Hermie discovers that God did make him special and wasn’t finished with him after all. He had turned into a beautiful butterfly.

David always loved music, but now he had a passion for it. He did not have any auditory difficulties when it came to music. He was inspired by all the great composers: Bach, Beethoven and others. He sat at the piano and imitated what his sister and mother played. He experimented with their set of rhythm instruments. He poured over hymnals and studied different rhythm patterns and tapped them out with his hand. He loved to sing hymns and choruses. He even wrote his own songs and played them on the piano. Jeanine believed in the healing power of music. After all, David, the psalmist played his harp to soothe King Saul’s troubled soul. Music was a significant part of their lives anyway and to see David’s response to it was encouraging.

Jeanine and her husband began to communicate their feelings with each other. They felt better equipped to teach and to love their precious son. They prayed together and God was answering their prayers!

Jeanine was able to talk about her worries, fears, and her hopes for the future. She knew there was hope for David. She began to depend on the Lord more and more. She knew that she was not alone. She knew God would give her a supernatural love for David and the wisdom to teach him about life and about the love of Jesus. She leaned on the Scriptures and on the old hymns.

“O for a thousand tongues to sing my great Redeemer’s praise,
the glories of my God and King, the triumphs of His grace!”
“Hear Him, ye deaf; His praise, ye dumb, your loosened tongues employ; ye blind, behold your Savior come; and leap, ye lame for joy!

“Yes, God! Loose his tongue! Let David sing Your praise! Increase his understanding! Draw him to You. He’s Yours, Lord. Help me to love him with Your love and give him Your peace…the peace that passes all understanding!”

This story is about love. The love between a mother and her special son. The love between a husband and wife. The love between sisters and brothers and a love that only God can give. This is also a story of hope. This story is not over yet. God is still working in the lives of this family. You see, this is a story about my son, Jonathan. I used our middle names as I related the experiences of our last six years. Jonathan means, “Jehovah gave” and David means, “Beloved”. God gave us our beloved Jonathan. He chose us to be his parents and Rachel, Hannah, and now Stephen to be his sisters and brother. We know that God has made Jonathan special and that He has special plans for him. We love him just the way he is.

“So, Jonathan, don’t worry. One day you will have wings like Hermie. You will soar and you will fly. Whatever you do in this life, my dear, son, remember that we love you. Most of all, remember that God says, “I love you just the way you are, but I’m not finished with you yet. I’m giving you a heart like Mine”.