My Precious Brother Toby--In Honor of Autism Awareness

 This is Toby, and he is a blessing to our family. Toby likes phone jacks, wires, and bananas. He likes to ask, "What are you having for dinner tonight?" He has the biggest grin and goofiest laugh when he's excited, the handsomest auburn hair and blue eyes, and is a precious young man made in the image of God. He also has special needs--agenesis of the corpus callosum, autism, and ADHD--although there is so much more to him than that. By this post, I hope to let you all get to know my brother as well as some struggles, at least from the perspective and memory of one older sister, that may be present in families and individuals with autism.

I was 11 1/2 when he was born. At first we didn't know that Toby had special needs. He seemed to us like any other baby but met his milestones a little later. I do remember he screamed if we held him facing outwards and that he sometimes hit his head on the table when he was old enough to sit with us. About that time, I actually wrote a paper on autism for school and asked my mom if Toby might have autism, but we put it out of our mind. Then, it took him a while to start talking. He started going to a speech class when he was three, and at the end of that year, his teacher suggested that there was more going on than just speech problems. When he was five (or six?) my parents took Toby to have an MRI done. That's when he received his official diagnoses.

Toby loved to pick dandelions as a preschooler. He also had little concept of danger at that time. When he was four, he wandered away from school while his class was at the playground. When my mom went to school to pick him up, Toby was gone, and his teacher told her that they had called the police. Helicopters were searching for him, and there was a busy road not far from that school. My mom ran frantically through the neighborhoods for forty-five minutes and found him herself. Praise the Lord! He had wandered into someone's front yard and was picking dandelions. The people who lived at that house were waiting with him so that he wouldn't wander anywhere else. I was at home waiting for my mom to return and was wondering why she was taking so long. She came home, all flushed, and told us what happened. That was scary for all of us. We always kept the doors locked--up high where he couldn't reach and unlock them.

Toby had a hard time with everyday sounds. Of course, our house was always noisy with seven people in it! He didn't like the sounds of people chewing, even quietly, or sniffing, or drinking out of a cup. He had a hard time at parties and at other people's houses. My parents would drive in two cars so that, when it became overwhelming for him, my siblings and I could stay. I thought maybe he would be interested in music because people with autism are "supposed" to enjoy it, right? No, everyone's different.

Toby was a picky eater (favorite food--Poptarts) and had trouble with foods for a while. Sometimes he would gag and choke after eating chewy, sticky things. Later my parents found out that the food would wad up in the roof of his mouth and that he somehow couldn't clear it with his tongue. He also ate really fast. Now he likes a wide variety of food but still has trouble sometimes with clearing his food from his palate.

Toby also didn't like people looking right at him, which I'm sure no one really likes. I probably really annoyed him the year that I took a drawing class and decided to draw a portrait of him. Whoops!

Toby enjoyed watching movement--the wheels on cars, the leaves swirling in a kiddie pool. As a small boy, he would spend hours outside watching those leaves, and my mom would sit there with him. She would read or clip coupons or work in the yard.

Later he enjoyed playing with the screws in electrical outlets. My parents would buy him his own electrical "toys" and parts. (He brought them here to our house once, and Naomi loved being able to play with outlets! Only the coolest uncles bring those kinds of toys.) Toby loved, and still loves, his trips to Home Depot.

Toby had a hard time with haircuts. He was afraid of them. When he was little, I had to help my mom hold him down while she quickly buzzed his head. I felt terrible for him and am sure my mom did too, but it had to be done. As he grew older, the haircuts bothered him less, and now he gets his hair cut at the same place my mom does.

Toby was like a toddler for longer. He would sometimes flush things down the toilet, so we kept the bathrooms locked all the time, and had a key on top of the door frame or pennies on a shelf to unlock the door. We kids also kept our bedrooms locked.

One summer my dad was doing construction in the upstairs bathroom. Toby went up there without our knowledge and opened the valve on a pipe. We were all getting ready to go swimming, and Dad was at work. When we came home a couple hours later, Toby went inside the front door, came right back out, and said with surprise, "It's raining!" Yes, it was. Water was coming down from the living room ceiling, and the circling ceiling fan sprayed it all over the room, the furniture, the carpet, and the piano. I looked at my mom worriedly. She laughed. Shortly after the carpet was replaced, it happened again, but we caught it sooner. My mom sewed new sofa cushion covers to save money. You know what? People are more important than things.

Toby has also struggled with challenging behaviors. He was very active and tended to tantrum or become physical when upset. He has enough speech to express his needs and wants and dislikes most of the time, and having some quiet alone space helps too. He has issues with sleep and takes melatonin to help him sleep most of the night. When he was little, my mom and dad received criticism and suggestions about their parenting. He didn't look any different from a "typical" child. My parents did what they could to figure out what would help him. Eventually, they decided to put Toby on some medicine. That, and his own increasing maturity and growth, has helped him calm down although the medications will need constant adjustment and revision throughout his life.

Toby has a close relationship with our sisters that are closer in age to him. He loves them and gets so excited to see them. There's a picture of him at Justin's and my wedding giving Anna a big kiss on the cheek. (Yes, he can be very affectionate too! I would say that is more the norm than the other "behaviors.").

We learned together as a family how to help Toby. We learned to use the phrase, "First...then..." to tell Toby what to expect. For example, first you must do this, and then you may do that. We also learned to tell Toby what we planned to do before we did it so that there weren't too many surprises. (Unless, of course, it was something he liked to do. Then we waited until last-minute so that he wouldn't be expecting it immediately.) For example, if one of us wanted to hold his hand to cross the street, we would say, "Toby, I'm going to hold your hand while we cross the street." Then he was prepared instead of just grabbing his hand. That principle of narrating our daily life transferred to mostly everything, and it has still stuck with me now as a mom of two young children.

Our church helped Toby too. They began to recognize that he had special needs as he reached preschool age. During one of the services at our church, toddlers and older sat with the parents. My parents tried to teach Toby to sit, but it was too hard for him. He was so active and didn't understand being quiet. Our church started a Special Friends ministry, originally just for Toby and then for other families, so that my parents and other children's parents could worship together in the service. The Special Friends ministry continues to this day even though most of my family is no longer there. Isn't God good?

When Toby was nine, I left to go to Bible college. My parents moved to be closer to my mom's family. After that I was working a job in Puerto Rico for almost two years. By the time I came back to the States, he was fourteen. We were both different. Toby didn't wander off anymore, but at my parents' new house, they had a fence built just for him. He could play outside by himself, and his new hobby was taking small handheld clippers and trimming the bushes. We didn't need to lock all the doors in the house anymore although my dad did build some large gates in the hallway to keep him in the bedroom/bathroom area at night. He was in a new school, and one year they had a special ice skating program. We all cheered and yelled with excitement as Toby and his class skated to the Pirates of the Caribbean theme song. I was sad when they didn't offer the program the next year.

 My parents were also able to get into a respite program for Toby and have a weekend off once in a while. (We had no respite where we lived before.) God knew what He was doing in moving us there.

While I was in college, Toby got interested in coloring. He would color and color sheets and sheets of paper and hang them all over the house. My mom sent me one of his papers when I was in Puerto Rico, and I saved it for a long time intending to frame it. I wonder where it is now...

Toby loved his dad. They would take long walks together and stop at McDonald's for a double cheeseburger. Sometimes they would walk to church, and that would take hours. When our dad was diagnosed with terminal brain cancer in March 2012, Toby had to go into emergency respite care. I'm sure that was hard for him (and for my parents) and I wondered what he thought. Dad went to be with the Lord in October 2012, but Toby still remembers him. My mom said that this past year she and Toby were driving together and he stared intently at a pickup truck on the highway. "I miss Dad," he said. We pray that somehow Toby will understand where his dad is. I wonder how much he understands who Jesus is too.

I don’t know why Toby has autism, but I do know now that God is good and does good (Psalm 119:68). Toby’s full name Tobias means “the goodness of God.” On a personal level, I struggled greatly as a teenager and young adult with trusting God and believing that He loved me when life seemed so hard. There was also likely grief or a sense of loss about the way things used to be. I was angry and anxious about a lot of the changes and difficulties in our home and selfishly more focused on myself than on the Lord and others, including my brother who will struggle with autism as long as he lives on this earth.

One day in the church library, I was reading Lies Women Believe and the Truth that Sets Them Free by Nancy Leigh DeMoss. One of the verses quoted was John 3:16, and I read it through tears and with a deeper understanding: “For God so loved the world that He gave His only Son, that whoever believes in Him should not perish but have eternal life.” By far the greatest display of God’s love for me and justice for my sin was in sending His own Son Jesus Christ to die as my Substitute for MY sin (my bitterness, my selfishness, my prideful distrust of God, and many other sins). Although I didn’t understand all this at the time, I knew I could trust that God loved me and that God was good no matter what because He DIED for me. He loved me that much, and He took care of my greatest need--forgiveness--at the cross. God extends this offer of forgiveness to all who will repent of their sin and put their trust in Christ alone as their Lord and Savior. The Bible also declares that Jesus rose from dead in proof of who He was, the Living God, and that one day He will return for His own and to judge the world in righteousness.

Toby is twenty-one now. In many ways, he is like a small child, but he is also more mature and calm like a man. He lives in a group home but still comes home often to spend weekends and holidays with my mom. He has come here to visit us too! Sometimes he has trouble at the group home. Things are busy and noisy there, and the staff doesn't always understand his needs. I love him and pray that God will always provide someone to care for him that loves him too.