Posts Tagged ‘community’

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!

Update: If that Makes me a Liberal Addict…

Just wanted to make my readers aware that the house resolution did pass… the copays have been postponed until the matter is studied further. Hooray! Click here to read the article.

Instantaneous McDonald’s support group

One day during my kids’ spring break, my daughter and I went to Meadowbrooke Gourds.  (I’m letting you know this because it is an awesome place and I want all of you to know about it.)On our way home, we stopped at McDonald’s for lunch.

As we were eating I noticed that people were watching this man who was not “normal” and acting a little wierd.

I looked over.  It was a young man who was obviously on the autism spectrum.  He was verbalizing, flapping, pacing… funny, I hadn’t even noticed until I realized that other people were staring.

Funny what I get used to, I guess.

I said something to my daughter, and she looked over.  We agreed that the man had autism.  I started watching him, not out of “rudeness” but out of concern.  I suppose my mom instincts kicked in.

A woman in line called to the man and instructed him not to beat on his chest.  He stopped.  I knew he was not alone, so my daughter and I went back to our lunch.

As we were leaving the restaurant, I stopped by the man’s table.  Turned out he was  22 and was out with his grandmother.  I explained to his grandmother that I had been watching him out of concern due to my being a mom of two boys on the spectrum.

She gave me a big hug.  She said, “We all have to stick together!”  We talked for a few minutes until the man decided to walk out of the McDonald’s on his own (typical… for us, at least!).   She ran after him and my daughter and I went out to our van.

We were buckling our seatbelts and I heard a honk.  As the grandmother was driving away, she had looked for me and honked in support when she saw my autism awareness sticker.  I waved and noticed that she had a sticker, too.

I really hope I see her again.  Our walk for autism is coming up on April 14th.  Since she’s in the area, maybe she’ll be there.

I was grateful for our encounter.  I have hope, because the young man reminded me of my own son.  May we all experience love and support in the unlikeliest places.

Challenger day

My sons play Challenger baseball.  Challenger is part of the Little League International, and is all about giving kids with special needs a chance to play baseball.

Our games are a little different:

  • The kids get to swing the bat until they hit the ball… it can take 12 times or more! They don’t give up, and keep trying until they hit the ball (with our without help).  It’s a great life lesson.
  • The teams don’t keep score, they just play.
  • Everyone cheers for both teams.

We had “Challenger Day” recently.  That’s the day when the Little League players come to cheer for the Challengers, and get autographs afterward.  And cheer they did… loudly and proudly!  I was impressed that they even found out each Challenger’s name so that they could cheer them on individually when they are at bat.

I enjoyed seeing so many kids asking my son and his teammates, “May I please have your autograph?”  Of course they were happy to sign! One girl was shy and didn’t ask.  She simply gave her paper and pen to Philip.  He said, “Do you mean to say, “May you have my autograph?'”  She smiled and nodded.  Philip smiled and signed.  Hooray for politeness and using words!

This year there were cheerleaders from a local high school who volunteered to cheer on the kids. They too asked for autographs.  Philip was really happy about that! Sadly, my oldest son missed the day due to work.  He’ll be bummed when he sees pictures of his brother with cheerleaders.

As we left the field, Little League parents were making sure that all the kids knew they played well.  “Good job!”

It was a great self-esteem booster for the Challengers, and a wonderful way for the Little League players to  practice acceptance.  Kids showing compassion and feeling valued gives me hope!

Summer plans

I am thinking about the summer.

Whatever happened to, “Summer time… and the livings easy…”?

Summer is always a mixed bag for me.  I like the lighter schedule. I like to be spontaneous!

I also hate the lighter schedule.  The lack of structure is hard for the boys.  They become video zombies.  If I’m not careful they can end up playing video / computer games for hours on end, and melting down later.

I’m caught in this tug of war between my rebellion against structure and schedules and my kids’ need for it.

Summer and me:   a love / hate relationship.

There are differences this year, though.  My oldest has a job, so he’ll be out of the house more.  Whew!

Pardon me, but I really need to vent. When my oldest has unstructured time he is very annoying.  Seriously.  It is “entertain me all the time,” and has been since he moved in when he was 9 years old.  (Once he asked a babysitter: “What are you going to do to entertain me now?”)  It is really hard for him to be on his own and do things independently.  One of my nicknames for him is “hover-round,” like the mobility device.  He hovers until he gets my attention. For example, I used to take a step backward and run into him, he was that close behind me! He’s gotten better, but he still stands around and stares at me until he gets my attention, no matter what else I may be doing. And if I don’t drop everything and make him the priority, he will do things like use his dad’s power tools without permission, cut his sister’s hair, start fights, or renovate his bedroom.  (That’s another post.)  I’m hoping that this job has a positive impact on his ability to be independent and work with others! So at least that’s hopefully going to be better this summer.  Okay, end of vent.

My younger son is much more verbal now and willing to try new things. His increased communication makes our days easier. For example, I am the video game tyrant, and he seems to understand this.  He has to play a game with me, do a chore, practice his piano, etc. before he can have anything electronic.

My youngest is much more independent now, and likes to do more “grown up” things with me now– crafty stuff, gardening, etc.  So I think we’ll be good there.

Could this be the summer of fun?

I remind myself that it won’t be all unstructured time. My younger son is going to extended school year (ESY) this summer, which will meet three mornings per week for 4 weeks.  I wondered whether or not to send him, but then remembered that he had a really good time at ESY last year.  The teacher ran it like a camp, and her staff even made a dvd of their adventures together.  He really liked it.  I also enrolled him in a reading camp, which I’ve heard is fun for the kids, to help strengthen his skill as he enters middle school. He loves stories and reading.

But there will be a lot of unstructured time.  I’m dreading it. So, readers, how do you handle summer down time?  I’d love to hear about it!  (In other words, “HELP!”)

What would you do?

I was at a kiosk getting photos developed at a Walmart when the store manager informed me that if my son kept “doing that” we’d have to leave the store.

My question: “Doing what?”

I thought that my son was around the corner looking at movies. Instead, he was climbing up on the shelves and riding exercise bikes. He was being unsafe.

Apparently, a Walmart  “associate” witnessed this, and instead of approaching me, went and got the manager.  The associate pointed me (and my husband, who was nearby) out to the manager, who gave me this ultimatum.

The manager informed me that my son had been on the bikes for several minutes, and seemed to think that I knew about this.  I did not.

Immediately, I went to get my son.  I agreed that he was being unsafe, and assured the manager that if he kept climbing the shelves we would of course leave the store.

Then I asked if the associate or manager had personally approached my son and asked him to get down.

Of course not.

I asked the manager if the associate had approached my husband, since he hadn’t approached me and he obviously knew we were the parents.

Nope.

Then I asked why the associate didn’t approach us rather than going for the manager to get us kicked out of the store.

Silence.

Thank you for shopping at Walmart.

I asked my aunt, who works at a different Walmart, what she thought.  She told me a story of how an associate told this boy to get off of the bikes, because he could fall and get hurt.

The mother, who was at the other end of the bike aisle,  yelled at the associate– “Don’t tell my son what to do!  He is my child… you have no right…” and demanded to talk to a manager.  The manager came out, heard the story, and reprimanded the associate.

My aunt thought that the associate in my case was probably afraid that if he approached my son or myself, he could lose his job.

Sad.

What happened to the village?  What happened to watching out for kids and each other?

I don’t know.

But I am grateful when others mention something to my kids, or at least to me, when they are being unsafe.

Once at a school event I looked up and  saw my son climbing the stacks of cafeteria tables and chairs.  I couldn’t get to  him through the crowd.  A fellow PTO mom saw him and got him down. Then she saw me in the back of the room, caught my eye, and apologized.

No apology necessary… thank you!

Once a stranger at a store saw my son run away from me and blocked the door.

Thank you again!

Having a child with special needs has taught me to appreciate so much more the value of the village.   Especially when I have more children than I do hands.

How do you feel about the “village”?

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.”