Archive for September, 2011

Converse. Repeat. Converse. Repeat.

Last night I told my middle guy to go up and take a shower.

Before he could answer, I had my own conversation with him alone and outloud. The following is my little monolog:

“Philip, go take a shower.

What?! Why?

“Because I said so.




Philip stood there, looking at me a little dumbfounded.  Then he just said one thing.

“Let’s start over.”


Super Suction Ears at Bell Rehearsal

My boy joined the church bell choir.

Actually, I signed him up.  But we won’t go there.

Anyhow, his first few practices have been interesting. His perfectionism is showing. I’ve noticed that he has to check all the bells, to make sure that they are indeed in the correct order up the scale.  He also is having trouble not being able to stop and correct his mistakes as the choir rehearses.

I can see him begin to twitch.

His answer to his perfectionistic anxiety: Be a clown.

One time he held his bell handles up to his ears, so that the bells were sticking out.  He said to the choir, “Look!  My super suction ears!”  Larry Boy, A.K.A. Larry the Cucumber, would be proud.

Another time he made a joke, but I was the only one who got it.  Wish I could remember it so I could share it.  Ah, well.

Bell choir will be a growing experience. The music, for the first time, is hard for him. He’s having trouble finding his individual notes amongst all the other notes.  Bell music looks totally different than piano music!  I didn’t want him to give up, so I wrote out his individual bell part on blank staff paper.  It had been forever– since my music major days at college– since I’d done that!

I had him practice that individual part on the piano, using his left pointer finger to play the A and his right pointer finger to play the B, while I conducted.

He was so happy, he giggled.

Then he said, “Look!  When I get to measure 72, I don’t play, I just stand here and cry. Boo hoo hoo hoo…”

He was taking the director’s cue– during the last three measures, he has no notes.  The director joked that all my son and another bell ringer had to do was stand there and be sad that they didn’t have anything to play.

I told my son that the director was joking, and that he shouldn’t really cry.

“But it’s fake.  I’m just pretending,” he replied.

“Yes, I know, but I don’t think Mr. F will be amused.”

“But it will make the other kids laugh!”

Yes, it will be an interesting time at bells. 

Oooh, I’m published!

I am proud to announce that it’s finally here!  I am so excited about this book.  I hope you buy it.  I, along with other parents of special needs kiddos, have a story in here.  Buy one for you, then one for your friend, and your friend’s friend, and your friend’s friend’s friend…

Hope you enjoy it!

Middle School Madness part 2

Well, it’s not so much “madness” anymore, but how else to name this post?  😉

We had an IEP team meeting regarding my boy.  I have to tell you that I have so much more hope now than I did.  (How many times have I said this after one of those meetings?  Maybe three times twice once.)

I discovered at the team meeting that the principal and special ed supervisor insisted that my son have one on one support.  (Gasp! Yes, really!)  That’s why he has a paraprofessional now.  Hooray!  I didn’t have to fight!

We moved him out of the large classes and back into small ones.  Yes!  I let them think it was their idea!

We also decided to honor his request not to be in chorus.  In fact, my little prodigy staged his own “walk out” in protest of his being there.  I was surprised, since he loves music so much and has a nice voice.  However, after finding out that there were 60 middle schoolers in chorus, I totally understood. He has perfect pitch.  Can you imagine being in chorus with 59 other kids?

Seems that he wants to “skip down the yellow line” that divides the hallway like a highway, rather than “stay to the right.”  Kind of funny… “follow, follow, follow, follow, follow the yellow brick road line! However, not so funny when you are running into kids who may just decide to deck you.

So, we decided to let my boy have a later class dismissal, so that the crowds had cleared the hall by the time he was ready to go. That one backfired.  He can’t stand being late, especially to lunch.  So we’re ditching that idea.  We aren’t moving it to an early class dismissal, either, since he’d probably obsess about leaving exactly 2 minutes early.

So that I get the daily communication as specified in the IEP, we are devising a checklist for him to take to each teacher so that I know how his days are going.  This way he gets to know his teachers and they get to know him.

Yes, it went well.  And to my surprise, the special ed supervisor asked if we could have a follow-up meeting within a week so we could see how our solutions are going!  (What? Not having to write another letter requesting a meeting? Wow.)

It went well.  Now we have to see how my boy does with the changes.  It seems to be going well, as I asked him how he liked his new schedule, and he said, “It’s better.” 🙂

All or nothing

I was reminded a few days ago that, yes, my son is still an “all or nothing boy.”

He has to be completely barefoot or have both his socks and shoes on.

He doesn’t do anything half way.  He doesn’t make small messes, they are big ones!

In his piano lessons, he won’t just play the right or left hand.  It has to be both.  If instructed to play just the treble, someone else has to play the bass.

In church he boycotted the music portion and went to sit in the coat area, because the violin and viola weren’t there that week.  The band was incomplete.

He can’t just wear his swim trunks, he also has to have a swim shirt.

At camp, he was supposed to take at least two pairs of shoes, in case it rained.  He only wears his sneakers, so I threw in his “swim shoes” that he wears to the beach. I figured that he could wear these to go puddle jumping, and he could also wear them in the shower.

No deal.

He said, “Oh….. so I’m just supposed to get naked and wear only my swim shoes?!?”

“IN THE SHOWER!” I exclaimed, because I really didn’t want that to happen.

“Oh.  Well, um, I don’t like it.”

“Fine. You don’t have to.”

Had to be completely naked in the shower, or have his complete swim outfit on.

All or nothing, that’s my boy.

9/11 thoughts

9-11-2001.  I dropped off my son at daycare and drove to Harrisburg, the PA state capitol city, to get office and church supplies, then meet my husband for lunch.

On the radio I heard that a plane had crashed into one of the World Trade Center towers.  I assumed it was a really stupid mistake of some small aircraft.  Then I heard on the radio that this was no small prop plane– it was a commercial jet.

Then I heard the news that the other tower was hit by another commercial jet, then the Pentagon and Shenksville.

I didn’t know what else to do, so I went ahead with my plans for the day.   However, it wasn’t “business as usual” and “shopping to boost the ec0nomy” for me that day.  I, along with many other US citizens, were thrust into the world of the fight against terror.  I left lunch early that day to pick up my little boy and hold him tight.

6 years earlier in 1995 I lived a couple miles away from the Murrah Building in Oklahoma City when it was bombed.   On April 19, every year, I still have get some anxiety symptoms.  I can’t imagine what people in New York, Washington DC, and Shenksville went– and are still going– through.

My stepson, who was 6 years old, was deeply affected by all the news coverage.   He didn’t live with us then.  If I remember correctly, this is when he became afraid of the sky and began to only play at playgrounds that were indoor or either had lots of trees that blocked the clouds from his view.  He also started wearing hats to shield his view from planes overhead.  ( By the way, the hope in this: he found a way to deal with his fear that was socially acceptable.)

Today in our church service our topic was how to do justice and love our enemies.  How do we do justice in the world without resorting to revenge?  How do we teach our children to do this, too?

I think we parents of special needs kids could be a step ahead of others in this challenge.  I believe it starts with not lumping everyone together in one group, and seeing people as individuals:

  • Not all airplanes are weapons, we explained to our oldest kid.
  • Not all people with autism are non verbal or savants, we explain to others.
  • Not all Christians are right wing extremists, as we can personally attest.
  • Not all Muslims are terrorists.

Our church recently did a series about other religions– our commonalities, our differences, and how to live in community with those of different faiths.  We went into different houses of worship and found that people were very open to talking with us.  Some even let us bring video cameras in so our congregations could see a different faith’s worship space. In the most recent Interpeter, a United Methodist publication, there was a story about United Methodist churches sharing their facilities with local mosques, working with the Muslim neighbors to benefit their communities, and even celebrating Thanksgiving together last year.

One of the pastors blogs about his experience working with the local mosque in his blog.  It’s very interesting reading– I highly recommend it.

I want to be the type of person who can look past my fears and do what needs to be done.  I want to be an example of courage to my children. I want to show them that, just as I want others to see my sons not as “autistic” but as individuals, I will see others as individuals too. My daughter rides the school bus home with a girl who just moved to the neighborhood.  She wears a head covering.  Next time, I will say hello.

Middle School Madness

Middle school is underway for my middle guy. Madness explains what’s seemingly going on so far.

Sometimes I question: Do teachers and staff really read the IEP’s prior to the new school year? Should I just buckle down and cyber school my kid? Am I over reacting?

My answers to my questions: Maybe not.  Maybe so. Not this time.

After hearing from my son’s school several times the first week, it is obvious that he needs more support during this transition.

This is what I have been told by the school thus far:

He has as “high level” of need, and needs more support to get through the day. Duh.

After rereading the IEP, the case manager saw that my son had social stories to help him in certain situations.  And then the case manager asked me if she should have said social stories.

Ya think?

I was also asked when my son would have a TSS in school, since we are approved for one.

How should I know?  I don’t oversee that.  Last I heard the agency was short by 14 TSS’s and was still hiring.

Yes, it’s been a stressful beginning to middle school.  Top it off with more drama from the county medical assistance office and medicaid, and I’ve about had it.

However, this blog is supposed to be about finding the humor and hope in our lives affected by autism. I have resolved to not wallow in my anger.  I still believe that there is hope and humor in almost all situations.

Here are my glimmers of hope:

  • The first time my son was a “car rider” rather than a “bus rider,” his homeroom teacher (not a paraprofessional, therapist, or even a special ed teacher) walked him to the van to make sure he’d be safe. A regular ed teacher who cares– that gives me hope!
  • When I asked my son if he liked middle school, he didn’t blow me off.  Instead, he thought about it and said, “Sometimes.”  My son not totally writing off  school (just yet, anyway) gives me hope.  And his answer gave me a chuckle.
  • My son’s occupational therapist at school, who also had him in elementary school, is seemingly watching out for him. I’m hopeful and thankful that there is at least some continuity there.
  • After speaking to an educational advocate, I know I’m not over reacting.

So there it is.  I love my boy so much, and I want him to be successful.  I know that as long as we don’t give up there is hope.