What Will Ben Need to Know?

Here we go again!

“What does Ben need to know to survive this world when he is 18 and what are we doing right now to get him there?” Not too long ago in Ben’s IEP meeting this question was posed to me.

It’s this type of question that causes me to stare at my ceiling at night. All. Night. Long.

When Ben was little and first diagnosed, I experienced grief, anxiety, loss, fear and shock. Shock is an appropriate word, it reminds me of a college day experience. My roommate played rugby and she needed more players for her team, knowing I played soccer she told me, “Lisa you will love rugby, it is just like soccer.” 2.5 seconds into the game as my head is buried 6 inches under the dirt I remember thinking “This is nothing like soccer. This is NOT what I signed up for.” Let’s be honest don’t most of parents have this thought at some time in the parent journey? Usually in the delivery room?

Being a parent of a special needs child adds yet another dimension to this thought. Don’t get me wrong I love Ben with all my heart and being his mom is the best thing that has ever happened to me. But there is a degree of surprise, of unexpected loss (AND gain) and fear that you might not be able to be all that your child needs you to be. Let me re-phrase that you WON’T be all that your child needs you to be. 

Yes parenting a special child brings the surprise, the shock and then you settle in. You find your new normal and begin to adjust, recognize the gifts around you especially the ones that those parents with “typical” (who’s typical?) children might not notice. This is the place I have lived in for several years now. I have gotten comfortable, not that life hasn’t come with its trials, but I have found peace and joy in the situation I am in. 

Now however I begin to embark on this new crazy adventure of anticipating adulthood. And those feelings of fear, surprise, anxiety fill my heart and my mind once again. What DOES Ben need to know when he is 18? The statistics say that 50% of those with autism graduating from high school are not able to find employment, what if Ben can’t find work? What if he can’t drive or navigate a bus? What if something happens to me? What if? What if? What if? 

Honestly I wish I had some great wisdom but maybe this post isn’t about wisdom, instead it is about honesty. I am scared. I love my son more than I could ever express in a silly little blog, I would easily give my life for him 100 times over. And I am scared. 

I am, but I will not allow fear to overtake me. I will not allow fear to paralyze me. I will not allow fear to steal the gifts that God has set out for me. I won’t because I have all of you. 

You support me. You encourage me. You love me. You have prayed for me. You have prayed for Ben. You love Ben. You support Ben. You encourage Ben. So I say thank you, I am deeply grateful.

It takes a village to raise a child, this is most certainly true.

My Big Brother

It seems appropriate to tell one of my favorite stories (and trust me there are many, many to tell) about my brother today on his birthday. To understand the depth of what happened you need to know a bit about my brother’s past. My brother was always has always marched to the tune of his own drum. It makes him unique , beautiful and honestly a little frustrating. This different spin on life made him a target for bullying when he was younger. It was a time when there wasn’t diversity training or bullying prevention. This made school a very difficult place despite the amount of energy and time my mom put in to advocate for him.  My brother had a hard time learning which negatively impacted his self-esteem. As a result of this intense bullying and struggles of life my brother desperately searched for a place he fit. He thought he found that place with some kids who were drug users. He was welcomed into the drug world at a young age and unfortunately this decision would bring heartache for him and for those around him who loved him deeply. My brother dropped out of school and journeyed down an incredibly long and difficult road. It was agonizing for all of our family to watch.

I knew my brother’s past and all that was stacked against him but still I was angry. I was angry that he didn’t say no. He didn’t choose a better life for himself. You see I am a rule follower. I like rules (well my rules anyway). I simplify things by making two classes of people, rule followers (good) and rule breakers (bad). My brother was a rule breaker. He didn’t conform to my standard of living and it annoyed me. I have this religion that is all about grace and love yet I was extending on him judgment and shame. 

Fast forward just a bit. My brother was in a severe ATV accident where his leg was pretty much severed off my a telephone cable. He would have bled to death except that there happened to be a person driving by on this old abandoned road that rarely saw one vehicle a day. This accident  was followed by incredible long, painful recovery. My brother had several surgeries, skin graphing, was placed on a ventilator for several days and many times he was near death.

During his recovery he was staying in an old nursing home at least 9 hours away from us. He had an external fixator on his leg which is what I am told one of the most painful things you can ever experience. (It is a device that stretches out the bone) He would call me and tell me stories about the nursing home and since life was kind of boring for him he liked to talk. A LOT. However my life was not boring in fact my life was over the top busy and I didn’t have time to talk with him to hear about life in his nursing home. I know how selfish that sounds but I do try to be honest in these posts and honestly I was selfish. 

One day he called me really excited to tell me his newest story. The conversation went a little like this…..

Ron-“Remember the old lady who yells out for blankets that I told you about?”

Lisa- “Uh huh.” (Did I? maybe…not really…)

Ron-“Well last night she yelled out again so I went in. The nurses were busy…”

Lisa-(I hope he doesn’t talk too long, I have so many things to do. I have no groceries, what was that Mikaela told me she needed for school, marshmallows? Why does she need marshmallows at school anyway?)

Ron-“Lisa? Are you there?

Lisa- “Yea, I am here, you went in to see the old lady.”

Ron- “Yea and you are never going to guess what happened?”

Lisa- “Okay…” (I hope he makes this short)

And then he told me the following story.

“Lisa the lady told me she tired and sick and tonight she was going to see her husband and have that dance he promised her. I quickly figured out that she was hallucinating since her husband was dead. But I humored her and sat with her and held her hand. We recited the Lord’s prayer together. (thankfully I resisted the urge to express my surprise that he still remembered the prayer) I held her hand and read to her and finally she told me she was tired and ready to go to sleep now. I left her room and in the morning when I woke up her door was closed. The nurse told me she has passed away in her sleep.”

(Huh cool story I thought. But I wasn’t nearly prepared for what he said next)

“You know Lisa if my whole life, my mistakes, my failures, my accidents, the pain, the surgeries, everything, everything I have experience lead me to be in that room with that woman to hold her hand so she wouldn’t be alone on her last night. It was worth it. I wouldn’t change a thing.”

Wow Ron, that is a cool story. (I probably mumbled something about needing to tend to the kids and hung up the phone)

I just sat there. Taking in what he just said to me. I started to weep over my own selfishness, over what I had been missing in my brother. I guess if I am honest with myself I want to believe sometimes that I was made for some kind of noble purpose, noble by the world’s perspective anyway. In my private moments where I don’t want people to see or know about, I know that I am selfish and full of pride. Would it be okay with me if my purpose was to hold the hand of a random dying woman in some small town no one has ever heard of? What if God called me to wash the feet of people no one knew or cared about. Would I or could I say “Sure God, I will suffer through this thing called life all just to wash the feet of a bunch of no bodies.”  With no recognition, no glory? Just say “yes Lord sure thing, wherever you call me I am there.” I really wish I could tell you today that would be my answer. I desperately want to be that person. Thankfully God’s not done with me yet, He is working on me and molding me a day at a time; helping me to see people with His eyes and not my own.

My brother has become someone who has inspired and taught me. He has reminded my how to be humble, how to see and love people the way that God does. He has shown me my own brokenness and how he loves me anyway. My prayer today on Ron’s birthday is that God would continue to give me a heart like my brother’s that sees brokenness and hurting and does something about it, even if no one is watching.

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.

Christmas Angels... don't you love em?

What was your favorite Christmas memory? The question has been posed to me. There was the year of the Barbie dream house.  It even had an elevator. Then there was the year of the guinea pig, yup you guessed it somehow little Squeakers survived the flight on the sleigh and found a place under my tree. Memories of the kids first Christmas’ and watching them open gifts they have hoped would be in the pretty packaging. However, ironically my favorite Christmas happened during my worst year. 2001. I was recently divorced and even more recently informed my son was autistic. 

Only a month before Christmas I was at the edge of homelessness and God showed up. (Insert Thanksgiving story, if you haven’t heard it you will have to wait for Thanksgiving) Since He had performed a Thanksgiving miracle I knew that God would take care of us but just wasn’t sure what that would look like and how it would happen.  

The month of December began with my friends (church and work) asking if they could help my family out with some Christmas gifts. A week later a parent of my long time best friend asked if she could take me shopping to pick out clothes for the kids and some gifts. I came home with bags of gifts and a Cub gift care that would provide food for at least the month of December!  A couple of days before Christmas gifts were delivered by some angels (disguised as my friends) and when they said “some” they were LYING! Truckloads of gifts were delivered. Some other friends invited me to a traditional Christmas family celebration at their parent’s home, there my children were guests of honor, loved on, given gifts and I was even forced to try Lutefisk. YUCK! :)  In their home I was family. Christmas morning we opened gifts for what seemed like hours. The kids had more gifts that year than every birthday and Christmas they have ever had combined. They still reference it as the Christmaspalooza. 

In the worst of times yet it was the best of times. After Thanksgiving God promised me that if I gave Him the reins He would not let me down. Through these most amazing people God was able to tell me this.

Lisa I love you. I love Mikaela, I love Ben, I love Faith. I love you so much. I know sometimes you feel so lonely. I also know that you trust me but sometimes you need a little reinforcement. I know all your needs so I have sent you all these amazing people, people who love me and love you. Stop for a minute, take it in, look around and see what I have done. I love you. 

Christmas happened so that we would have Jesus, (God with us) thanks to that Christmas 2001 I am reminded that God is always with me, wherever I am and wherever I go. No guinea pig could ever beat that! I pray God is able to remind you of the same this Christmas! 

Merry Christmas from my family to yours!

Pleasing People

“He is really such a people pleaser.” It was about the 12^th time my son’s teacher said this in the morning IEP meeting. The first 6 times she said it I was thinking it was a good thing, it was followed up with “He is so cooperative” and “Ben is so flexible” but the tone began to change and it appeared that the group didn’t think Ben’s people pleasing was such a gift after all. You know that moment in time when you suddenly see something in your child that you don’t like about yourself?

My name is Lisa and I am an admitted People Pleaser. I have read self-help books on the subject, I met with therapists regarding the issue, requested wise counsel on the matter but honestly 36 years later I haven’t changed much. I like people to be happy and I like it even more when they are happy with me.

All day long it bothered me. How did I unleash this terrible habit on my son? Will he ever learn to stand up for himself? Will he be beaten down and never find satisfaction? After all who can ever please everybody? I worried, I prayed that my deficient mother skills hadn’t brought too much harm to him or at the very least it might be reversible.

When Ben finally returned home I sat him down. I explained to him how important it was that he realized it wasn’t his job to make everyone happy not only that but his self-esteem shouldn’t depend on what others think of him, only what God thought of him. At that point I think he might have thought I lost my mind because he gave me an exasperated “MOM what in the world are you talking about?” I told him about the meeting and my fears for him. Then he said “Well mom, I don’t care. I truly don’t care. I mean I am just happy to be there. So I figure hey, if they care about something more than I do, why not let them have their way? (long pause/sigh) Mom is that wrong?” 

I had to think for a while, honestly too long because by the time I had an answer it was too late, he was gone. I am pretty sure he wasn’t really asking me a question. And that is how it is with Ben, more often than not he is the one teaching me the life lesson rather than the other way around.

People pleasing is not always bad.  In fact it can be quite good. If you care deeply for someone, you are sincerely grateful (as Ben is to be at a truly amazing school) or you believe in the golden rule, why not go out of your way to please someone else? Lesson learned. I probably should have consulted Ben before therapy, think of the money I could have saved!