Boy + Clary = Love

I just love teaching clarinet lessons.

My student B has been working very hard.  I am so proud.  His tone quality is vastly improving (his playing is sounding more like an instrument than an angry duck).  He plays  for at least 20 out of 30 minutes now, which is awesome– his stamina is increasing.

While he was putting his clarinet, or “Clary,” together, I did a 10-second “check in.”

“How was your week?”

“Good.”

“Have your been practicing?”

“Not really.”  Hmmmm.

“Do you still like playing the clarinet?”

“Yes!  I love Clary.”

“I’m glad.”

“Yep. Clary never disappoints.”

Awww.  A boy and his clarinet.

Isn’t it wonderful when we have something in our lives that we can count on that “never disappoints”?

For me, that which never disappoints is God.  I freely admit that I have my down times. I’ve yelled at God and wondered what the heck God is thinking.I believe that God has gotten me through a lot of “ick”. I’ve survived and become stronger.

That being said, I have to say that I am so thankful for music.  I can’t imagine life without it.  When I discovered the clarinet, I was hooked.  Being a musician and a clarinet player formed a huge part of my identity throughout junior high and high school.  In college, I majored in music and clarinet was my instrument.

Music has brought me joy.  I have mourned and celebrated through playing. However, I over did it. I played so much and was in (what I considered at the time) a competitive music school in college, that I got burned out.  My senior year of college I  dropped band and orchestra.  I joined choir where I could relax and have fun.  I still took clarinet lessons, as my degree required it.  At the end of my senior year, I played my senior clarinet recital, put “Clarissa” (my clarinet) on the shelf, and didn’t get her back out until much much later.

Now I am teaching music to others, and Clarissa is right by my side. Sometimes I need to take a break so I can once again fully enjoy playing.

At the end of our lesson, B said, “Let’s give Clary a round of applause!”  We clapped and cheered.

Clary never disappoints.  I’m  glad that B has found something that can potentially be an haven for him when the rest of life disappoints.  I hope that someday he will realize that he can count on himself, too– just by being true to himself, B will never disappoint, either.

Chores, to-do’s, and more phone calls

I was out with my daughter at Daisies, and I received a phone call from my son.

“Hello?”

“Uh, Mom?”

“Yes, Philip?”

“I did my homework!”

“Great!  What’s next?”

“Uh, let’s see here…. hmmmm….. oh, chore!”

“Okay, I’ll tell you your chore when I get home.”

“What’s my chore?”

“I can’t tell you right now, I’m driving!  But I’ll be home.”

“But what’s my chore?”

Sigh.  “Ask Dad.”

“Okay.”

I hung up the phone.  5 minutes later…

“Hello?”

“I did my chore!”

“Ok, what’s next?”

“Um…. practice drum for 10 minutes.”

“Okay, practice your drum.  You don’t have to call back… I’ll see you at home.”

Click. 10 minutes pass.

Ring.  I ignore, because I’m driving!

One minute passes.  Ring.

Sigh. “Hi there.”

“I practiced my drum for 10 minutes!”

“Okay, what’s next?”

“Practice piano for 15 minutes!”

“Okay!  Go do it, then!”

Click.

And so on and so forth.

He was really self-motivated, I guess, because before he could play his X Box, he had to do all of his to do list, including homework, practicing, chores, packing up his backpack for the next day, etc.  A parent has to check off the to do list.  My husband was busy doing his mom’s taxes, so Philip called me.

As I said in a  previous post, I love hearing my kids’ voices on the phone.  I wonder if my mom still loves hearing mine.  I don’t think I’ll ever tire of it.  And I’m proud that he is motivated to do his chores from his new to do list, and I’m happy that he is proud of himself, too.

I listened to my phone messages later.  Of course, one was from Philip.

“Mom? Mom? Humph.”

I saved it.

Phone messages

My kids regularly call my cell phone and leave me messages when I’m away.

Actually, sometimes I’m home.

Anyway, since I love it when they use words, whether or not they have autism, I cherish these messages and save them.  Right now I have about 9 messages saved that I listen to when I need a laugh or a smile.

Most of the messages are from my daughter:

“Oh, helloooooo, Mommy.  Would you please come home soon?  I would like to watch tv with you, or maybe a mooooooovie.  We could snuggle on the couch together.  Come home soon. Bye.”

“Mommy, I need to let you know that you should really keep your phone with you so that when we call you will answer. Remember your phone next time and answer! Bye.”

“Hi, Mom. I miss you.  I really do miss you.  Can you come home soon? I love you.  I really love you.  I miss you.  Bye.”

A couple are from my son:

“Hi Mom.  I need a snack.  Bye.”

“Hi mom, okay, mom… you need to come home.  Bye.”

I know that someday my kids will be grown and gone.  Sometimes, actually, I am excited for that day to come.  Other times, my heart aches at the very thought. I am hopeful, though, that these calls will continue as they get older.  I must be doing something right, because my kids love me and miss me. Even when I’m gone for only 5 minutes.

Hangin’ at the Hibachi

My son loves the hibachi. You know, where you and others sit around a grill, watch a Japanese chef cook and entertain, and then eat yummy food.  He was thrilled when we went to a Japanese steak house in Annapolis.

Since we usually go to the hibachi restaurants for lunch, not dinner, we were not used to waiting more than about 5 minutes for our chef to arrive. Philip was a real trooper, though. He waited patiently, gave me his soup, ate my salad… it was all good.

I admit that I was a little nervous when some strangers were seated at our hibachi, and Philip said something to me about it. But I explained to him that sometimes people we don’t know sit with us at hibachis, and he accepted this just fine.  Hooray!

When our chef finally arrived and began to twirl his cooking utensils like batons, my boy decided to be a little announcer.

“Ladies and Gentlemen!” he cried. “Give it up for… um… the guy who… plays with these things! Let the show begin!”
To my relief, the strangers at our hibachi laughed with me. We had a great time.

I’m not sure why I feel the need to “explain” my son to others, but when Philip got up to get an after dinner mint, I explained that he had autism. No worries, they said. Their friend had a son with autism, too, and they were hoping that he would speak soon. They said they were impressed with Philip’s speech.
Understanding, acceptance and fun while hanging at the hibachi. That gives me hope!

Update on going off the diet

Today was our annual visit to Annapolis, MD to meet with the folks from Pfeiffer Treatment Center.

I told the doctor that we were off of the gfcf diet now.  It seems like my son actually weaned himself off of it– occasional “cheats” and finally just quitting altogether.  This is what I found out:

The diet is apparently not meant to be life long.  It is to be done until the symptoms of leaky gut are gone, and the intestines have healed.  Signs that the diet needs to continue: return of bowel issues and return of the symptoms the were present before the diet was begun.

That’s pretty much it.

Not feeling so “light” today. We are really tired.  We both had trouble sleeping last night.  We probably both got around 3 hours, versus my 7-9 and his 9-10.  He’s also been off of his supplements / regimen for over 24 hours, and is off the wall– stimming like crazy!  So the supplements do indeed work.  They are too many to mention, and we are going back to compounding this next time so he has fewer pills to swallow.  To top it all off, the reason he’s off of his supplements is due to the lab work he was to have done today… which didn’t happen, so I’m extra frustrated.  Also, we think that his yeast issues have returned (which explains his carb feeding frenzy), so a really fun stool test will happen in the next couple of weeks.  Yay.

Ah, well.  At least we know that the sky is not going to fall because we stopped the diet, and that the supplements are working.  And if he does have yeast issues we can deal with that. There’s the lighter side. (Glad I found it!)

Dolly Partner and a dream come true

A couple of years ago, we had a year of Dolly “Partner.” (That’s what Josh called her when he moved in with us.)

Dolly Partner Parton is one of Josh’s favorite artists.  He thinks she’s young.  He can’t believe she’s old enough to be his grandmother.

When he first moved in, we would hear him singing in the shower, “Jolene, Jolene, Jolene, JOLEEEEEEEEEEENNNNNN…”

He would listen to Dolly “Partner” every chance he got.  He especially liked her song called “Joshua.”  “Coat of Many C0lors” was another favorite.  He looked for CD’s at used CD places and yard sales.  He hung CD covers on the wall so he could gaze at Ms. Partner.

He dreamed of going on vacation to… you guessed it… Dollywood!

So,  a couple of years ago, we had the year of Dolly Partner Parton.  Not only did we go to Dollywood (which was somewhat disappointing to my kid because she wasn’t actually living there), but we made sure he got to go to see Dolly live in concert! I saw the ad in the paper, plotted with my hubby, got up early on the day they went on sale to get great tickets online. Since we could only afford two tickets, only one parent could go.  But what mattered most was that Josh would get to see his Dolly Partner.

We were all excited when we told him about the live concert.  He called his bio mom, and told her, “Yes, I’m going to go get to see her– ALIVE! On the stage!”

Since I’ve never been a huge fan, my husband took Josh to the concert.  I regretted it later. I had no idea that she was an accomplished, well-rounded musician. My husband said I would have loved it (and he, being an introvert, would have loved to have quiet time at home).

Anyway, the guys dressed up and left early for dinner. My heart melted seeing them go out for a nice, dream-come-true-evening together. I waited up late that night. I wanted to hear about Josh’s time at the concert, especially since I was the mastermind behind it all (ahem).

Here is how our conversation went:

Me:  “How was it?”

Josh: “Fine.”

“What all did she play?  Did she sing your favorites?”

“Some of them.”

“Which ones?”

“I don’t remember.”

Silence.

“Well, what was your favorite part about the concert?”

“It was kind of boring.  All I did was sit there.  But it was okay.  Thanks.”

And then he went to bed.

I sat there speechless.  His reaction was definitely either unexpectedly disappointing or unexpectedly funny.

I decided on the latter.

My husband told me that Josh really liked the concert, that Dolly could play a million different instruments, and that Josh really was tired.  He wasn’t used to being up that late.

The next day Josh told everyone who would listen about the concert.  He even said that his stepmom got the tickets and let him go with his dad, and that was really cool.

I learned that living joyfully and peacefully with others, especially those who have autism, usually means letting go of my expectations and accepting what is.  And I appreciate when others do the same for me.

Taking advantage of opportunities that come our way and accepting others for who they are– these things definitely lighten my life!

Write it down

I was going absolutely crazy with keeping the evening and morning routines going.  Getting the younger two kiddos to school on time was almost impossible and I was so stressed out when they walked in the building.

Not the way I want my morning to go.

I had asked my hubby to please please please help me get stuff ready the night before.  It seemed that when I went out for the evening (meetings, Zumba, etc.), the next morning was chaos.  Nothing changed.  I think dear hubby was very overwhelmed, too.

I finally took my own advice and made yet another schedule.  My husband and I brainstormed then decided where to hang a new schedule, what should be on it, how to make it not so overwhelming, etc.

We now have a simple schedule, hanging on the kitchen shelving unit, that is easy to follow.  It is really a to do list, since evenings are going crazy with new activities.Here’s what it looks like.  It’s amazing to me how much of a difference typing this and posting has made.  Making it a to do list allows our kiddos to adjust for evening activities, school delays, and unexpected things that come up.

daily routines by E. Givlerg activities, school delays, etc.

Recently, I started attending a Bible study based on the book Made to Crave: Satisfying Your Deepest Desire with God, Not Food.  The idea is that we are all made to crave God,  but we fill that craving with food or other things that unhealthy for us.  (I can identify… stress and emotional eating is my downfall.)  We were challenged to write down our plans for eating– not simply keep a food diary, but plan the menu of meals and snacks, write it down, and shop accordingly.    I remembered that, last year when I lost 50+ pounds, menu planning and keeping a food diary were vital to my success.  Writing it down was very powerful.

I wonder what else I could accomplish just by writing it down.  Hmmm.  How about “breathe”? Or, “don’t wring any kid’s neck today.”  Or, “You are a sexy hot babe.” 🙂

Having a flexible plan and writing it down definitely lightens my load.  It also lightens, I remind myself, the loads of my kids and my family as a whole.

Going off the diet

In 2005, my son Philip went on the gfcf diet.  As I wrote in a previous post, I cried!  But we did it.  Somehow, when the going gets tough, I cry and move on, step by step.

According to the folks at Pfeiffer Treatment Center, if casein (dairy protein) was a problem for Philip, we would see fogginess and an inability to focus. If gluten (protein in wheat, barley,  and rye) was a problem, we would see hyperactivity, severe impulsivity, and perhaps even dangerous behavior. We were to try the diet for at least three months to see if there were any changes.

We saw a lot of change in a short amount of time.  Here’s a short list of some benefits:

• We no longer worried about his “escaping” the house. (Before the diet, we had actually called the police a couple of times because he’d simply disappeared. Thankfully, nothing bad had happened and he was safe.) About a month after we began the diet, the escaping stopped and we could take the alarms off our doors.
• We didn’t have to worry about his staying with us when we went out somewhere.
• His speech increased.
• He listened much better.

So the diet, although it was a challenge, was a success.

However, over the past year, Philip has been “cheating” on his diet.  The following event convinced me to start weaning him off of the diet altogether.

A few days ago, I came downstairs to find Philip sitting on the couch, a blanket over his head, and heard munching sounds.  I yanked the blanket off of his head, and said, “A HA!”  I discovered that Philip had gone to the garage, opened the deep freezer, pulled out a frozen pizza, unwrapped it, microwaved it, neatly removed the pizza from the microwave, and cut it into slices with a pizza cutter.  He then took a piece, proceeded to the couch, covered up his head, and at his breakfast in secret.

I didn’t know whether to scold him or laugh and  be proud at his self-sufficiency! I ended up having him clean up after himself, throw out the rest of the pizza (because he didn’t ask first), and get on with his morning schedule.

We watched him throughout the day, kept tabs on him at school, and saw no behavior differences.  In the past, we would have seen “off the wall” behavior right away and perhaps received phone calls from school.

Nothing bad reported.  Nada.  Zilch.

Philip is now eating regular school lunch, and is as happy as a clam.  We continue to monitor.  I am keeping my fingers crossed that, by the time we go on vacation this summer, the diet will be history.

Funny thing is, Philip has been having “green” days at school since he went off the diet.  That means he didn’t get in trouble at all.  Wow.

I became a Wildtree rep (see my link to the right) mainly because of this special diet.  However, we are eating so much healthier because of Wildtree that I’m glad I signed up.

Going on the diet 6 years ago lighted our load by increasing our peace of mind.  Going off of it now lightens our load by lessening our grocery bill and giving us more freedom and flexibility.  Just goes to show that change is inevitable, and that for everything, there is a season!

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.

Shreds

My shredder, how I love you.

We are in the midst of “The Great Clean Out” or TGCO, of 2011.  Phase 1: Files.  You know, paper out the wazoo that goes forth and multiplies.  We got a cardboard box, filled it with with papers to shred, and shredding became a family affair.

As we had our shred fest, I had an epiphany.  There were more uses for ye ole shredder than just shredding old tax documents and the like.

Example: newspaper ads. My oldest loves the newspaper newspaper flyers and junkmail. We find this stuff everywhere. His backpack, dresser, closet, and who knows what else are packed with old newspaper ads– grocery stores, pharmacies, pet stores, department stores, hearing aids, expired coupons, and flyers from used car dealerships.

If he just kept a few, it would be okay.  But we’re talking weeks worth of ads and junk mail, which leads to his increasing frustration that he can’t afford what he’s wanting or he can’t get rich quick by going into the lawn care business.

Then there are previously recycled papers that “mysteriously” reappear on the dining room table. Some of these reappearing papers are “important” reminders back from weeks past (Remember, candy orders due Thursday!). The announcement ends back on the dining room table just so it can give me a panic attack because I mistakenly think I’ve missed something important. (Note: when writing those alarmist announcements, please date them.)

The paper takes on a life of its own as it spawns more and more paper. Then walks out of the backpack and bedroom to taunt me in the dining room.

Arrr, foiled again!  So much for TGCO!

So I got an idea.  I had a secret weapon in the paper war.

I started shredding our recycling.

It does add “one more step” to our routine.  However, I found this lovely lady who has a ceramics business and ships her fragile wares all over the country.  She is glad to take the shreds for packaging.  I figure it helps her out, it’s good for the environment, and I win one more battle in the war against multiplying paper.

When I shred the ads immediately, no one notices that they are gone.  It’s out of sight, out of mind. It’s win/win.  Take that!

Alas, my shredder now seems to be dying of old age or over exertion.  So I’m looking for a new and improved model that will also shred old credit cards, drivers licenses, and gift cards with nothing on them that we seem to hold onto “just in case.”

TGCO continues.