Welcome to My World
By Pat Hays
There are some things I don't say to my son anymore, such as "when you grow up, I hope you have a son just like you!" I used to say it with some laughter in my voice, gleefully imaging his future as a parent with a son who behaved just like him. It would be only fair, I often thought. After what he put me through, he deserved to have to raise a child who acted just like him. I used to say it, but not anymore. My son has Asperger's Syndrome, an Autism spectrum disorder.
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| "I will give thanks to you, for I am fearfully and wonderfully made." |
| Psalm 139:14 |
From the moment Nicholas became ours through the miracle of adoption, this whirring, inquisitive, whopping 5 pound 10 ounce bundle of energy, has always been a unique, some might even say an eccentric child. He has always loved motion, whether it is spinning, jumping, flapping his arms, or tiptoe-walking. He makes strange little sounds and shrieks a high-pitched scream that will blast your eardrums when he is excited. He constantly licks new objects, such as a slide or a swing, before deciding whether to use them.
When he brushes his teeth, he hops on one foot. Loud noises frighten him, except for the ones he makes. He can't read social cues, so he does not know if people like or dislike his actions and he has no idea what people are thinking simply by looking at their face. He does not understand sarcasm or teasing and he ascribes a literal meaning to anything that is said to him. For instance, if I say, "Nicholas, you are full of baloney," he will earnestly respond, "I don't eat baloney, only hotdogs."
He collects rocks and bottle caps and stashes them in his pockets for comfort objects. This habit used to drive me crazy before I understood it. No matter where we went, he had to dig around for some rocks to stick into his pocket before going inside. I was always saying, "No rocks, Nicholas. Put down the rocks and just come on." It was so frustrating, plus he had rocks everywhere—in the car, in his pockets, and all over his bedroom. If he wasn't picking up a rock, he was searching for bottle caps from water bottles which he also either collected or stuffed into his pockets along with the rocks.
He wears his clothes sideways and backwards and doesn't even notice. At age 9, he still cannot put on his socks correctly or tie his shoes. He tells me that he will make sure that the "Mom" he marries knows how to do it. He is the most uninhibited child I have ever seen. He hugs everyone he meets and thinks that if he knows someone's name, he or she is no longer a stranger. To him, a "bad" stranger is just someone whose name he doesn't know yet. I used to worry that a stranger would run off with him, but now I comfort myself by saying that if a stranger took Nicholas, he would return him within thirty minutes.
Nicholas has great difficulty with transitioning from one thing to another and his brain lacks the ability to sequence or logically process information. He possesses an incredible vocabulary, but struggles with reading. He virtually "melts down" when he becomes too overwhelmed by his world. Melt downs range from crying and screaming to physical acts of aggression.
In 2004, Nicholas started kindergarten. We had just received a bipolar disorder diagnosis on him a week before kindergarten started. The bipolar diagnosis later turned out to be incorrect. Instead, he had Asperger's Syndrome. However, during the first nine weeks of the year, he was in three different schools—not exactly an ideal situation for a child that has problems with transitioning. Our dream for him to be in a Christian school ended abruptly after just a few weeks when his behavior became too uncontrollable for the school to handle. I was devastated when we had to remove him from that school. His principal went into his classroom every morning and sat down in Nicholas's little chair and prayed for him. All I could think was "if he can't survive in a school where someone prays for him every day, how will he ever make it anywhere?" I was soon to learn just how prophetic that thought was.
Next, we enrolled Nicholas in the public school near our home. It had an open classroom environment that was over-stimulating, plus it allowed Nicholas to escape and actually run through and disrupt the entire school when he was having a melt down. That experience lasted about five weeks. He spent eight days suspended from school for hitting and kicking children, teachers, and administrators.
The school experience seemingly changed my life overnight. One day I was a Mom with a child about to start kindergarten and the next, I was crying all of the time. My sweet little boy had become someone else—angry and sullen—physically expressing his anger and actually trying to hurt me. One afternoon while in a rage, he chased me around the house with a baseball bat trying to hit me in the head until I ran and hid from him in a closet. My husband and I constantly had to leave work and retrieve him from school. He took out his anger on both of us. Afterwards, he was always sorry. Then, there were the times when he refused to take his medicine. He would lay on his bed and cry, "Mommy, just let me die." It broke my heart. My faith was stretched to the limit and beyond.
We had to keep Nicholas in public school because no other schools were equipped to deal with a child like him. The school district recommended another school where Nicholas would be placed in a special education class. My only knowledge of special education came from what I knew as a child, growing up in a small town--it was a place for the mentally retarded children. I could not accept that my son was going to be in special education. When people asked me where he went to school, I would just murmur "public school." I couldn't even bring myself to say the words "special education."
When we first took him to visit the special education class, Nicholas became engaged in an activity that the other children were doing. He sized up the class and when we got ready to leave, he said to the teacher, "is this a class for kids with problems like me?" It was hard for me to hear Nicholas acknowledge that he knows he is different, but I have learned that it bothers him far less than it bothers me. Every night I smile as he begins his prayer, "God, thank you for me." I also thank God for Nicholas, but I have to ask God to teach me to be thankful for the child he is and not the child I often long for him to be.
Although I fervently resisted it at the time, the special education class turned out to be wonderful for Nicholas. The teacher focused on his anxiety and behavior. He was very bright, so academics were put aside to try to get him accustomed to being in a classroom without hurting other children or bolting from the room when he became anxious about a task like writing a list of words. He went from having 30 to 40 behavior episodes a day to just 3 a day within a matter of weeks.
Nicholas showed improvement, but it was not consistent. For no apparent reason, he would experience a huge setback that caused me to think that what I was trying to do for my child was causing more harm than good. I prayed more than I had ever prayed in my life, but it seemingly did no good. Our Community Group and family and friends everywhere were praying, but Nicholas only became worse. Each day was more horrible than the day before. I despaired. I could not talk to God without yelling, "Why aren't You doing something? Why don't You help him?" Friends would tell me to trust God and that He was doing something, even if I couldn't see it. I reached a point where I no longer believed that. I wanted to see God doing something and I wanted to see it immediately.
I couldn't imagine what kind of plan God had in mind. First, I could not understand why God would create a child with this disability. Next, I wondered why God picked us to be his parents. We felt so ill-equipped to help him. We had both spent our entire lives as super over-achievers. We had no idea how to deal with a child that couldn't even write his name. Why did God give us this particular child to parent? I constantly asked God if He was sure He had picked the right mother for this child that I loved so much. I often doubted myself completely and told God, "he needs someone so much stronger than me, so if it's really me that Nicholas needs, please give me the strength and the wisdom I need.
One of the hardest lessons God taught me from this experience was that my plans for Nicholas were not the same as God's plans for Nicholas. This didn't mean that my plans were bad. They just weren't God's plans. Like all parents, I had to learn to let go of my hopes and dreams for this child and instead to trust God with His plan for Nicholas.
Despite the problems with school, life continued and I learned to cope, but it was not easy. I often described myself as living life one wave short of a shipwreck. I gained strength from our friends at church and our pastors. The first time I met with one of our pastors, he told me that God may be giving me this experience so that later I would be able to bring comfort to others who were going through the same thing. That thought absolutely floored me and I refused to believe it. Every time I talked to or e-mailed our pastor, he would remind me of this fact. A year later, I started a new job and within the first month, I talked to three people at work who had children with problems similar to Nicholas. I don't know that I brought comfort to any of them, but I was able to share how God had taught me patience in dealing with my situation and I had become able to share my story with others. I could even say that Nicholas was in special education without choking on the words.
I still long for my child to have a "normal" childhood, but I can now accept that it is not going to happen. The thing I cannot accept is the anguish he experiences at the longing for friendship. One night he prayed, "God, could you please send me just one friend?" I thought my heart would break. A few nights later, we were eating dinner and the doorbell rang. A boy who lived down the street was standing on the front porch and asked if Nicholas could come out and play. His eyes got so big when I told him and he said, "Mom, I have a friend!" A few days later, a friend from church called and asked if Nicholas could go home with her family after church and play with her children. God is so good to answer the prayers of a child.
During the past few years, I have learned to rely on God more and more. One verse that I read often is Ecclesiastes 7:13—"Consider the work of God, for who is able to straighten what He has bent?" I think about this verse and the beautiful work of God that has been placed in my care. I am not able to straighten what He has bent, or even to understand why, but God is able.
I start each day with these thoughts: God specifically sent this child to our home. He chose us to be Nicholas's parents. God made Nicholas the way he is. God does not make mistakes. Nicholas did not ask to be like this. It is my job to be the best mother I can be to the treasure God has placed in my care.
I am just starting down a pathway that others have walked for years. It is not easy. I have learned that I cannot rely on myself because it takes more strength and perseverance that I can summon from within. I never know what each day will bring and it is probably better that way. Some days are so good that I am convinced Nicholas is getting well. Other days return me to reality as their events are unspeakable and would be totally unimaginable for most parents. Yet I understand that both kinds of days are a necessary part of God's plan for Nicholas and for me.
In the quiet of the night, I often sit on Nicholas's bed and watch him sleep. It's the only time of day when his body is not in constant motion. In the peace and stillness, I ask God to use my son for some great purpose and to not let his suffering be in vain. And as I pray, God brings the words of a song ever so gently to my mind: "Where others see a shepherd boy, God may see a King."