Posts Tagged ‘inclusion’

Ok, who is this kid? Music makes a difference.

As I posted previously, my son plays in the bell choir at our church.  It’s a good way for him to be part of a group, learn to take direction, and make music– one of his passions.  (I give great kudos to his hand bell choir director, who has learned how to work with my boy and been very patient. I bet he was a great band teacher and school administrator prior to retiring!)

The bell choir plays about 4 times per school year.  Usually, I am my busy self and it dawns on me the Saturday afternoon before the Sunday morning performance that my son needs to have his clothes, shoes, etc. ready.  More than once we’ve had to run out at the last minute to get him dress pants or shoes that fit.

This time, however, was different.

I reminded my son, “Hey, remember what tomorrow is?”

“What?” he replied.

“Bells!”

“Oh yes!  Mr. F. wants us to wear green.”

“Green?”
“Yes, we are supposed to dress like it’s spring.”

“Oh.  Well, I don’t think you have anything green.”

“Yes, I do.  I am going to wear my Hawaiian shirt because it has green in it, my light brown pants, my brown dress socks, and my dress shoes.”

Waaaat???  Planning ahead?  My son?

After I recovered from the shock, I asked him, “Do you have those things ready?”

“I’ll go up right now and get it ready, Mom. OK?”  He ran upstairs to his room.

“Ok,” I replied. I had to sit down.  This was amazing.  I had this feeling of relief that I didn’t have to do it, but at the same time I felt a sadness that I wasn’t as needed. But mostly I was relieved.

A few minutes later, my son called from upstairs,

“Mom, I need to go out to get a new belt.”

“Why?” I called.

“Well, does my blue belt match my Hawaiian shirt?”

Okay, by this time I was about to faint because never has my boy cared about matching.  But I recovered quickly, and said, “Yes, the belt matches.  There is blue in your Hawaiian shirt, too.”

“But Mr. F says green.”

“I don’t think Mr. F. cares about your blue belt.  He said ‘spring,’ right?  Not just green.”

“Yes!  Okay, thanks, Mom.”

Huh.

My boy proceeded to lay out all of his clothes, including his socks, shoes, and belt.  The next morning we were actually early for the dress rehearsal because he was ready in record time.  He even complimented someone at church on their shirt.

Double huh.

Music makes him want to prepare and get up in the morning. Music is helping him be independent.  I have hope that my husband and I may indeed be empty-nesters.  And that’s a good thing!

Field trip! Field trip!

I had the privilege of chaperoning the 5th grade field trip to Philadelphia. I admit that I was dreading it at first… a bus ride with 40 5th graders?  No way!

But it was a good trip.  It helped that we raised money to charter a luxury tour bus!

The best part of all was that I got to make some memories with my boy.

I witnessed first-hand the compassion and acceptance of his classmates.  When we arrived at our destination, Philip began to stim– flap his hands and vocalize “EEEEE!”.  This is unusual for him to do at school or at school functions, so I knew he was overwhelmed.

His classmates weren’t phased one bit!  No judgment. I did mention that he was overwhelmed, and one boy tried to help him find a quiet space. Wow.

Once my son climbed up the base of a statue to pose for a group picture.  He didn’t know how to get down.  Two 5th-graders offered their hands for him to hold so he could jump.  Then they went about business as usual.  Again, wow.

Yet another classmate sat with my son at lunch and tried to strike up a conversation. He reminded Philip to make eye contact and stuck with him for the whole lunch break. 🙂 Wow!

I will miss these kids next year, as my boy will go to a different middle school.  (YIKES.)  Two of the kids let me know that he will be missed– and one told me that Philip could definitly handle their “regular” middle school if I changed my mind.  Awwww. I wish that our “regular” middle school had the support he needs.

I was very impressed by my son’s emerging ability to self-regulate.  He has always sought pressure on his jaw and chin.  At a gift shop, he saw hacky sacks.  He ran to the bin, picked one, asked me for money, and then went to the register and paid for it all by himself.  Then he used it to give pressure to his chin and jaw.

Wow, wow, wow.  And he didn’t even lose the hacky sack!

My favorite moment, just between the two of us, was walking in a park together.  I told him that I was proud of him and that I loved him very much.

“I love you too, mom.”

Then we both said, “Awwwww!” and put our arms around each other.

What a great day.  My boy is growing up.  Although I am nervous about next year, I am happy that he is maturing and beginning to take care of himself.  I am grateful that he has had classmates who accept and welcome him.

It was a great day indeed.

It takes a village

Not so “light” memories flood my over-analytical mind.

As I have shared, I am an ordained pastor, currently on family leave.  Right now I find it impossible to take good care of my family and be a minister of a congregation.

Sometimes I wonder if I could do both, if the church truly behaved like…well… the Church.

I accepted an invitation to speak at my church about the responsibility of the congregation to care for all of it’s children.  In my tradition, the church is a family.  As members, we vow to nurture one another, provide a community of love and forgiveness, and to pray for one another. We claim our identity as part of the “family of God,” the “Body of Christ, where no part is more important than another.”  We promise to support and  care for one another.

Sadly, in my experience, many times these promises have been empty. Many times, I’ve found more support outside of the church than inside.

Once, I pastored two small churches full time, while parenting a very active toddler.  Like many parents of children on the autism spectrum before the diagnosis, I knew something was “off.”  I didn’t know what it was, so I did the best I could.

Some well-meaning (?) church members  told me that if I was only a better mother, he would behave better. Others said that I should quit my job and be a stay-at-home mom he’d be more well-adjusted.  Someone advised me to spank him.  Another told me that I  wasn’t a good example for the other moms in the congregation. Being a first-time mom, I thought these people might be right.

So much for a community of nurturing, love, and forgiveness.

I was perplexed. I was trying my best, but was very frustrated. I inquired about taking a parenting class offered by the county government. But when I spoke to them, they asked me if I would like to teach the parenting class.

I began to realize that was doing the very best I could, and that there might be something else going on. I called early intervention, and eventually my son was diagnosed with autism.

How did my church respond?  It was mixed. There were some people who supported me wholeheartedly and said they’d be there for me and my family no matter what it took.  Others seemed to have an “I told you so” attitude, and I heard one person say, “Well, no wonder!”  Overall, I felt alone and scrutinized.

The emotional toll of the nay-sayers, the attackers, and accepting a diagnosis was too much.  I left.  My journey to healing and acceptance began.

We found a faith community where we are accepted and included.  When my stepson moved in, I was even more grateful for this community. My church is not perfect, but they really care and want to include all of us. They have done many things “right.” They are open to education and learning. They have helped me to lighten up a bit.

I now train faith-based and non-profit organizations to welcome and include people with special needs and their families. I hope they will learn from my story, good and bad, and be open to others who are different and actually celebrate those differences.  I hope that others will see the lighter side of autism and other differences, and the joy that comes from acceptance and welcome.

As one of my colleagues says, “Thanks for listening with your eyes.”

Autism and Alleluias

Struggling with my Christian faith has been a constant in my life.  You may have noticed that I am an ordained pastor, and for now I am taking a break.  I am wondering what my future holds.

So now there is a book that I just am “chomping at the bit,” as they would say in my native Oklahoma, to read.  It’s called Autism & Alleluias by Kathleen Deyer Bolduc.

I was so happy to meet Kathleen at my church in 2007.  She spoke at a “Mother to Mother Luncheon” for moms and caregivers of people with autism.  I had read her book His Name Is Joel: Searching for God in a Son’s Disability, in which she wrote about her search for a Christian community for her family, including her son who has autism.  I cried, I laughed, I sobbed, and I prayed my way though this book.  I couldn’t believe it when I heard that she was going to come to my town, to my church, to speak to me and my friends and other moms.

I was privileged to take Kathleen and her sister to dinner that night.  The flames of my dream of being a writer and public speaker were fanned!

At the time, I was actually on staff at my church, teaching about spiritual gifts, helping people find places to serve, and advocating for people with disabilities– after all, they have gifts and skills, too.  At the same time, I was becoming frustrated with my job and what I perceived as lack of forward movement.  I was lonely in my spiritual journey. Talking with Kathleen helped me to see that I wasn’t alone in my “loneliness” in my faith community.  I have talked with other people, Muslim, Jewish, Christian, who feel the same thing in their communities.

I ended up quitting my job not long after the luncheon.  I had several reasons, but the greatest was my frustration and loneliness.  I began to really evaluate my faith and what I perceived God telling me to do next.  I pulled back from my involvement at church, and took time to rest.

Last fall, I scheduled a session with a spiritual director, who helped me discern my passion and my longing.  I began blogging not long afterward.

I know now that my passion is for inclusion of people of all different abilities, not only in faith communities, but in life.  No more shunning or pigeon holing or discounting the gifts and talents of all people.  People with autism and all differences deserve to live out their purposes and passions in supportive communities, and to know, without a doubt, that they are valuable and precious.

I have been told that I am a “prophet,” that I am a pioneer and ground breaker in the Christian community.  Sometimes I want to throw in the towel. I struggle to let go of anger, fear, and to keep from isolating myself and my family in order to “protect” us from the stereotypes and the “well meaning” comments of others.

That’s why I choose to write about the “lighter” side– to keep my eyes on the prize, to not give up hope.  It’s like therapy for me.  I hope that my readers will not find me too much like “Pollyanna” or think that I have an easy life.  I am simply writing about the “alleluias” in my life, to keep me and my family going and to hopefully give hope to other families, not matter what their faith may be.

Thanks for reading. Now, I’m off to find Kathleen’s newest book.

Time out

This is one of those times I’m going to take a break from talking about autism.  This time it’s about my dear daughter.

My daughter was in a grumpy mood this morning.  There was a 2-hour delay for teacher in-service, and she really wanted to stay home all day, I think.  Plus, she wanted me to make her breakfast (a peanut butter and jelly on toast), she wanted to eat her sandwich in front of the tv, and she wanted me to pamper her, all while she laid on the couch under her soft blankie.

I informed her otherwise. She had to make her own sandwich (working on stepping up the self sufficiency), no eating messy sandwiches in front of the tv, and no pampering… not this morning, anyway.

She proceeded to be very angry with me and yell, stomp, tell me that she’s tired of dealing with me, I never do what she wants me to do. (She sounded like a mini version of her 15 year old brother.)  I managed to keep my frustration under control and calmly sent her up to her room for a  time out.

As her time out was coming to an end, I started to go upstairs to her room, where she was hopefully simmering down.  I heard her bedroom door slam shut.  As I approached her door, I had to stifle a laugh. On her door, which we had previously painted with dry erase paint, she had drawn a picture:

Photo by Elizabeth Givler

It’s an angry stick figure with the words “I am not happy” written above.  I refrained from laughing loud and went to my room to laugh quietly by myself.  Then went back to take a picture :-).  Here’s a close up view:

Photo by Elizabeth Givler

I knocked on the door, she let me in, and we talked.   I explained that since she’s 7, she can make her own sandwich.  Sometimes responsibilities mean that we have to give up something we want to do for a little while in order to do what really needs to be done.  She thought about that, and then we hugged.  She changed the picture:

Photo by Elizabeth Givler

She erased the word “not”, and added a pink smiley face.  After all, pink is her favorite color!

I realize this post isn’t about celebrating the differences.  It is about family life.  I do want to point out that I think she got this idea from our feeling chart on the fridge.  We used to use something similar to help the boys understand feelings.  Meg now likes to gauge her own feelings on the feeling chart.  And she let me know in no uncertain terms how she felt by drawing a demo.

I wonder if this could go along with “inclusion.”  Sometimes, or dare I say most of the time, the things we use to help those who have “disabilities” are beneficial for all people.

How are you feeling?