New Journeys

I wrote the following post a few years ago while reflecting on a journey with my son Ben who has autism. Recently my path has taken me down a new and exciting road. After talking with several friends who all have children with autism I realized we all had the same problem, church. Children's ministry was difficult but youth ministry was next to impossible. Time after time friends have confessed to me that by the time their "special" kids reach their teenage years they resent church and beg their parents to leave them home.

I thought that might be the fate of Ben as every Wednesday night became a battle. It was so much easier to give in and let him stay home. And that is almost what I let him do. One night in the church  hallway I carefully mentioned our struggle to Bekah (Ben's youth pastor) and to my utter delight she asked if we could meet for coffee. That coffee date was the beginning of something beautiful for Ben. Bekah would not let Ben settle for Wednesday nights at home. She wouldn't let the church fail Ben. For that I will be forever grateful.

Bekah and I searched for resources to guide us on this journey. We were saddened to find that there was very little direction out there for assisting autistic teens on their spiritual journey. We both believed that God's love and hope is meant for all people regardless of ability. As a result we have shared many triumphs and a few failures while helping Ben experience Christ through youth group adventures. Although its a path neither of us expected it is a place we both have come to love.

Considering our deep love of "special" teens and commitment to helping them experience Jesus it should come as no surprise that when asked if Bekah and I could share what we have learned we both jumped at the opportunity! We have developed a ministry plan to aid teens, their families and youth workers to a successful youth ministry  experience.  We will be leading another seminar April 8th. See the following link for more information.
http://www.youthleadership.org/3HOUR-Training.aspx

While we don't claim to have all the answers. I can tell you that Ben is thriving in church, experiencing God's grace and love. My prayer is to help all people regardless of ability experience Christ as Ben has.  Together I believe we can show these teens that God loves them and has created them in His own image. We can show them they have a place in out hearts, our life and our ministry.

Read on for a little more about me and Ben......

 Gifts

"I am not exactly sure what I am looking at. I am not an ultrasound technician but it looks like there might be two heads!" my obstetrician informed me. "I have a two headed baby?" I gasped. It never occurred to me that at 30 weeks pregnant, I might be carrying twins! She showed me "it looks like a head up here and then" with a dramatic wave of her arm to the other side of my protruding abdomen she finishes "another head all the way down here." Did she have to say "all the way" as if the other end of my stomach was somewhere near Florida? I was pretty sure I was still sleeping and pretty soon I would wake up. It was after all, 2:30 in the morning.

The next morning I discovered I indeed had been awake. I was definitely pregnant with twins, a boy and a girl. 7 short weeks later on September 13th, Benjamin and Mikaela were born. Despite worries of potential complications and concerns, both babies were born perfect and healthy. Benjamin and Mikaela were good babies, they slept and ate well. They were the most beautiful babies I had ever seen. They were also as different as night and day. He was round and chubby, she was petite and tiny. He was mostly bald except for a small patch of blond hair, she had the most beautiful, brunette ringlets. As they turned 1 their differences only became more pronounced. She was incredibly articulate, already speaking in full sentences. He was slower to speak, passing grunting sounds off as words as she babbled away. People would tell me, “he is a boy and boys develop more slowly, no worries”. I tried to put those worries away.

As they turned two, I noticed my son was becoming harder to handle, he would run as fast as he could without ever looking back. He would have angry outbursts and melt down at what seemed to be such minor things. I would express my concerns, only to hear, “he is a boy, they are more physical, you worry too much, just let him mature”. Still in the back of my mind I couldn’t completely turn off my worries. At 3 my daughter sat in Sunday School class, next to the teacher offering to help hand out papers, while my son would cry from under the table.
I started to question my abilities. I began to worry “was I enough of a mother to handle these two babies?” I was afraid I couldn’t do it. I realized I needed some help.

Just as September 13th my life had been turned upside down, again my world was rocked on October 24th when I attended a speech evaluation meeting for Ben. I couldn’t believe it. I walked into a room of about 7 people around a table. I sat down and all the faces grew serious. I felt the pit in my stomach sink a little lower. They looked at each other trying to decide who should speak first.  Finally after what seemed like an eternity someone spoke, she said “I am very sorry to tell you this, but your son, he has Autism.” “What ?” I was about to explode, “you must have the wrong results; see I am here for Ben the one with the speech issue.” They only shook their heads and said, “speech is one way Autism shows itself, we have thoroughly tested Ben and we are sure, he is autistic.” The rest of the meeting was a blur; they showed me bar graphs and tests. They showed me where a “normal” child would be and then where Ben was.

The next several weeks I began making 2nd, 3rd and 4th opinion appointments. I saw our pediatrician, a pediatric neurologist, a speech pathologist, a psychiatrist, a psychologist and Child Development Specialist. Every appointment ended the same way, “yes Ben is Autistic” then they would give me ideas to cope and support services I could use. I didn’t want to cope. I didn’t want to be supported. I wanted this diagnosis to go away.

“Why would God allow Ben to be Autistic? What is Ben’s future? What will become of him?” I cried. My dreams and hopes were crashing in on me. It wasn’t that I wanted a perfect child, or even that I thought it somehow reflected me. It was that I loved this little boy with my life and when he watched other kids do things he couldn’t or when other little boys played together on the playground and Ben was left all alone, my heart broke for him. It broke into millions of tiny little pieces. I knew for the rest of his life, he was going to be different. But, it wasn’t even so much what I did know that scared me, but what I didn’t know that terrified me, kept me awake at night. No one could tell me what the future was for Ben. Would he be able to go to a normal school? Would he be able to make friends? Would he be able to drive? Would he be able to have a girlfriend? What about live alone? What if I were to die? What would become of Ben? I was left with many questions and so few answers.

To answer some of these questions I drug Ben to yet another specialist. Each appointment I hoped for a new diagnosis, a confirmation of a mistake. This day was different. It would be a beginning of a new life, for both me and Ben. I walked in, unaware of what God had planned for me. I marched up to the counter to check Ben in. Once checked in I plopped myself down on the uncomfortable hard backed chair, and settled in for what would likely be an incredibly long wait. As I sat I pulled out my list of questions to be sure it was complete and that I hadn’t thought of anymore. I caught something out of the corner of my eye. It was a mother, holding a small child. I noticed behind her was a wheelchair. It looked to me that this child likely could not move un-assisted. The girl’s eyes were glossy I am guessing she must have been blind. She was not talking, yet her mother was still talking to her. The mother had the little girl cradled like a newborn, although it was obvious that she was not a newborn at all. It didn’t seem to matter to her. It was easy to see that when this mother looked at her daughter she did not see her disabilities but her abilities. She didn’t see what her child would never do but saw the potential of what she might do. This mother didn’t miss a moment, she didn’t miss a grin or a giggle. She looked at her daughter as a gift and her daughter was flourishing because of it.

In that moment I heard a soft whisper from God. "Lisa until you see the gift I have given to you in Ben you will never be the mom he so desperately needs you be."

Then it hit me, what was I missing? God had given me a gift, but could I see it? Had I missed the sparkle in his eyes, the hugs from his arms, the tears on his cheeks? Just then, I grabbed a hold of my son, I took him in my arms, just like he were a newborn and right there in that clinic I held him and wept, I wept over what I had lost and then over what I had gained. A gift.

The questions that whirled in my mind just seconds before had vanished. The tests, the procedures, the questionnaires, the results, none of it mattered now. What mattered was this little boy named Ben. Not the boy with autism, or the disabled boy, no just simply Ben.

Ben has taught me about life. Ben has taught me how to enjoy the moment. He has taught me how to love instead of judge. Ben has taught me not to be embarrassed of my weaknesses. He has shown me I am capable of more than I ever thought possible. Ben has been a reminder of the gift of life.