Nicholas in Hawaii

Nick greeted with flowers at the airport

Nicholas and Dad (Mike) are in Hawaii!  What a year it's been to get them there.

We found out last February that the marching band at Nick's high school was selected to represent the state of Arizona in Hawaii for the Pearl Harbor Memorial Parade.  Each ship, boat, or sub that was destroyed in Pearl Harbor on December 7, 1941 has a representative marching band in the parade.

What an honor!! These bands are selected based on competitions.  This year Nick's high school band placed third in the state competition.  Tons of hours practicing.  The band meets at 6am every weekday morning before school.  Then they have evening practices and weekend performances and competitions.  BUSY.

Marching in parade

Then the fundraising to get Nick there.  The school had several fundraisers, volunteers asking for corporate sponsorships, and families donating.  Nick wrote many letters to family and friends to help contribute to his account.  So this endeavor is the result of many.  MANY.

Once funding was successful, another contingency surfaced:  supervision.  We did not trust anyone with our child.  Sensory overload, dietary restrictions, and anxiety attacks are not to be left with any adult.  Mike and I had no idea how Nick would react being on a plane.  Personal space and tight quarters are not easy on anyone, let along a teen with autism.

I brought this up with the band teacher, citing the IEP accommodations and modifications.  The only acceptable solution was for Mike to be a chaperone.  I was told that "the IEP would be taken into consideration when choosing chaperones".  That did not give me any consolation.  Then came the email from the band booster president that a lottery would be held to pick chaperones.  I was completely on edge then.

After several correspondences with the band teacher and Nick's case manager, I made it clear that the only person who would be appropriate to help Nick was his parent.  A fellow class mate or another adult would not suffice.  ESPECIALLY if some emergency happened.  They couldn't just call us, and we'd be there within minutes or even hours.  This was a safety issue.

I am not sure what conversations were held on Nick's behalf when the selections of chaperones were picked.  When the list was publicized, Mike's name was on it.  Relief.  Now we had to come up with the funds for Mike.  As always, money was not going to stop us from pursuing something that would benefit Nick.  Lots of prayer and faith in that department, and the funding has materialized!!

So Nick and Mike are on an experience of a lifetime.   Yes, there's a lot of "behind the scenes" that I did to help make this work.  Lots of mental preparation for Nick.  Not just band practice.  Practice sitting in close confinement.  Practice talking softly.  Practice...

I think the effort is worth it.  Nick's smile says it all!

The Battle Begins: Trust The Parent?

The first Monday morning of summer school I went to the school early to talk with the computer teacher, Mr. L. I informed him that my two boys had autism and IEPs (Individual Educational Plans-- big name for the educational goals that teachers and parents set for the child). The teacher said that he would get everything from the computer. I offered my cell phone, and he replied that was on the computer too.

The first week of summer school passed. Nick was very frustrated. He had a D+. If anyone knows Nick, he or she would know something was terribly wrong. This is the child that is the perfectionist. Back in March he had one A+, three As, and one A-. He was NOT happy because he did not have straight As. The A- was not good enough. The next report card showed five As. Nick was happy.

So this D+ was not good.

Ryan had a B. Ryan is the one who can wait til the Earth fades before pulling out a book to study.

I tried to figure this out. I asked the boys several questions. I received some conflicting answers, but what was clear was that the special accommodations that were listed on the IEPs were not being implemented. Nick and Ryan are suppose to get extended time on assignments and tests. That was not happening. Nick needed that time.

The following Monday morning my husband and I showed up with copies of the accommodation pages from the boys' IEPs. Mr. L refused to accept the pages. He said that, since these papers did not come from the administrative office, he could not accept them. There were legalities involved.

I was stunned. NEVER in my life had a teacher refused these papers. In fact, teachers usually expressed gratitude, "Thanks. It usually takes the office days or weeks to get these to us."

Mr. L asked me if I understood. The Mama Bear in me challenged him, "No." I took a breath. "No, I don't. I've never had a teacher question my integrity before." I had to restrain myself...

My husband and I walked to the administration office, and we talked with the principal. She said, "You need to understand that we have 1300 students here. It's going to take time." I bit my tongue.

The next day I made an appointment with the vice principal and the teacher. The vice principal, Mr. Z, was a teacher that knew from Nick's junior high. When we arrived at the classroom, Mr. L was busy at the computer. We sat down. Mr. Z asked if I brought copies of the boys' IEP so he could read them. I laughed. Here is an administrator asking ME, the untrustworthy parent, if I had copies. He couldn't get copies from the computer in the administration office? He was going to TRUST ME, the parent? How daring!

The meeting was successful, but I couldn't get over the irony of the teacher vs the vice principal. One refusing the IEP from me, and the other wanting a copy from me.

Just another day in the life of being an advocate for my kids in the school system!

photo credit:TI CC-40 (Set: 30)