Posts Tagged ‘overcoming challenges’

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!

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Words

I originally posted this in December 2010 when I started this blog.  I wanted to share it again for Thanksgiving.  Have a Happy Thanksgiving!

“I am thankful for making words.”

I read this and froze in my tracks. My son wrote this on his construction paper “leaf” at school for Thanksgiving 2010.

I began to remember all the times we wondered if he’d ever speak to us.  I remembered when he was three years old and, putting him to bed one night, he said, “I love you” to me for the first time.  I cried, and told my husband and called my friends and family, even though it was late.

I recalled how we used to not give him anything he wanted, putting everything out of his reach, until he would say the word for the item.

I remembered how his only words were echolalic terms.  He would only repeat or “script” words from movies, books, and songs.  I remembered how happy I was when he told me the first time, “I want…. Daddy?”, as if he were unsure he could want Daddy.  I remember (as does my husband) how I unlocked the bathroom door where Daddy was… um… busy… because Philip used a complete sentence and expressed that he wanted someone he couldn’t see for the first time!  Philip stayed in the bathroom with Daddy until Daddy was done.

I remembered how we slowly and painstakingly helped him ask questions and request what he wanted, how we used and are using sentence starters to help him have conversations with friends, how we role played before social situations what he could say when someone asked him such things as “How are you?  Do you like school? What grade are you in? How old are you now?”

And, more recently, I remembered with tears in my eyes how happy I was when I asked my husband if he would put Philip to bed and Philip said, “Daddy, tell Mommy no.”  How he answered me now when I asked him how his day was or what he wanted for dinner.

Philip wrote, I am thankful for making words.

I am thankful, too.

Sibling woes

We insisted that my daughter go to my son’s 5th grad graduation. After all, her brother went to her Girl Scout ceremony.  That’s what we do.  We support each other by going to each other’s events and celebrating milestones.

She was not happy to be at the school after being there all day and all week.  She was done with a capital D.  She sat on the floor and sucked her thumb.  (Wish she’d give that up!)  She said loudly that the singers were stupid and that the music was lousy.  She didn’t care that her brother got an award, and even ripped his name out of our program.  She asked for a piece of paper and a pen to draw.  She wrote me a note that said, “I hate you.”

I don’t know if she was hot and tired (the school has no ac in the record heat!), or jealous of her brother’s attention, or dealing with the busy-ness that the end of the school year was bringing, or all of the above.  In any case, she was miserable and we were, too.

Finally we let her go hang out in the lobby but she got a consequence of missing her favorite Saturday morning cartoons for not being respectful and polite.

The next day she had to clean up her room and skip tv.  I had a job interview, so Dad was in charge.  When I got home after lunch, she was still in her room.

At least she listened.

She asked if she could come out of her room, and I told her that Dad and I would have to discuss it and decide.  In order for her  punishment to end, she had to apologize to us and to her brother.

To us: “I was wrong to be mean to you and say I hate you and not listen.  Next time I will listen.  I’m sorry.”

To her brother: “I was wrong to disrupt your graduation and I’m sorry.”

We forgave her.

But on the lighter side, she did draw some awesome pictures saying that the loved her family and on good days she claims that her brother is her best friend. I guess we must be doing something right.I wonder sometimes if we do the right thing in making our kids attend each others’ stuff, or if we do pay too much attention to the boys and our girl gets left out. Balancing is difficult!

How do you know when you are doing the right thing?

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.

Hair cuts

Recently I told Philip that I was going to get Daddy to cut his hair.

He thought about this for a moment.

“But Daddy’s not my hair cutter.”

“Who is your hair cutter?”

“My hair cutter is Miss Andi.”  Pause. “When Daddy cuts my hair, he cuts all of them.  Miss Andi cuts only some of them and then it’s not so itchy.”

Well said.  Have I mentioned before that I love it when he uses his words? 🙂

Philip definitely prefers Miss Andi, and for good reason.  Daddy does an all over buzz cut.  Miss Andi buzzes only the sides and back.  She cuts the top with scissors.  Miss Andi’s cape also stays closed all by itself.  Daddy has to keep his cape closed with a clothes pin.

There are other perks to going to Miss Andi’s, too:

  • Gracie, her cute little dog, sits on his lap when he gets his hair washed.
  • Miss Andi has a spinning chair that moves up and down, and a mirror for making funny faces.  Daddy has Philip sit on a step stool in the garage.  Enough said.
  • Miss Andi has a special sink with a sprayer for washing hair,  a “tickle-y” brush for getting the hair off his neck, yummy snacks and drinks, and a special timer.  Daddy has Philip go wash his own hair and Philip only gets special snacks and drinks if he sits still.
  • Miss Andi has a timer.
  • Miss Andi’s timer rocks!

Cell phone photo by Elizabeth Givler 🙂

Cutting Philip’s hair has not always been easy.  (Same for Josh, who used to run out of the house at the sight of the clippers.) A hair cut was endured, usually with one parent holding the crying boy’s  head still while murmuring comforting things, and the “hair cutter” working as quickly as humanly possible.

Miss Andi has found what works for Philip.  She lets him play with her timer while she cuts his hair.  It is actually three different timers on one device. Philip obsesses perseverates focuses intently on the numbers, and before he can say “Hey, what are you doing?!?”  his hair is cut and he looks so darn cute.  Hooray, Miss Andi!

Holding ear down for Miss Andi while looking at the timer. Photo by E. Givler

Going to Miss Andi’s is a family affair. I love it when she highlights my hair– my hubby says I look hot :-).  Meg likes being pampered (since she was two years old… wash, condition, cut, style, blow dry… the whole shebang).   Philip and Meg like playing with her adorable children.  Since it’s a home based salon, chances of seeing her kids are pretty good.

Meg getting pampered by Miss Andi. Photo by E. Givler

Miss Andi is one of the few “hair cutters” who “gets it.”  I am thankful for people like her who are patient and understand that Philip is not misbehaving when he has sensory issues.

People like Miss Andi make my family life easier and, more importantly, give me hope.  She’s not only our “hair cutter.” She’s also our friend.

No more “T” word–Changing my tag line

A photo I saw on Facebook

Today I was reflecting on my blog, and it’s title.  I decided to change the tag line.

I admit that when I wrote the first tag line, “It’s not all tragedy, there’s humor and hope,” I was being somewhat sarcastic.  I roll my eyes now when I hear autism described in such dark terms.  When my son was first diagnosed, I was pretty much told that my life was over.  How wrong they were!

I decided that since I’ve started to see autism as a difference, and sometimes as a different culture / way of being,  why mention the “t” word? Granted, it took me a while to get to this place, as I mentioned in my first post.  I still do research in to causes, theories, treatments, but no longer at the expense of forgetting that my children are people, not problems. Yes, I did that once.  But no more!

My sons show me such courage when I see them embrace their individuality.  I have learned so much from them, not only about uniqueness and acceptance, but about myself as well.

A friend posted this on her blog, Another Piece of the Puzzle. I think it is a good thought for all of us as we begin the new year and continue our journeys:

Dare to be who you are, and learn to resign with good grace all that you are not and to believe in your own individuality.

I am  reminded to appreciate others for who they are, as unique individuals with a unique combo of gifts, talents, points of view, and abilities.

I pray for others to see all of my children as people who don’t need to be “fixed,” but as children, who have a bright future ahead of them.

I pray that my oldest son accepts himself as he is, and know that he is loved.

I pray that my middle guy will continue to be who he is, to be persistent and true to himself.

I pray that my little daughter knows that she is loved and important.

I pray that I would dare to be who I am, accept my limitations, and believe that I am the person God made me to be,  celebrating my uniqueness.

I think I’ll post this quote on my fridge.