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.
