On The Second Day Of Christmas

We went shopping for some new items for the Christmas Tree.  We also purchased wrapping paper and Christmas cards.  Why now?  I like the 50% discount off the regular purchase price of these items!!  I usually send out cards after Christmas, and I'll use the solid color wrapping paper throughout the year.

We started celebrating the 12 Days of Christmas several years ago for many reasons.  I've blogged the whys and wherefores in years past.  I will reiterate the main reason here:  it is much easier for kids with autism to handle.  Less is more.  The less to process, the more enjoyable for all of us.

We stretch out the gifts and activities for 12 days.  That might sound expensive, but it really isn't.  We have a box for each day, and the gift is for the entire family.  For the next two weeks, we'll spend more time together.  The gifts are usually simple, but a few might be extravagant.  They always focus on family.

Best way to spend our effort, time, and money:  family!

Best Christmas Gift: All My Sons Together

Nick, Stuart, Ryan, Cameron, Michael

Not exactly a Christmas photo, but it was taken a week ago.  They had planned a garage sale together.  They all contributed in some manner, and they split the profit.

I don't get to see my boys together very often.  Mike moved out a decade ago, so activities that include all of them are rare.

I enjoyed seeing them work as a team, and getting along.  So many times I hear that siblings don't get along, especially when special needs like autism are involved.  Best Christmas present a mom could ever get!

Merry Christmas!

Lessons With My Granddaughter

Last Saturday, I spent some time with my granddaughter.  She was diagnosed with autism when she was three, and I was curious to see how she was progressing.  We decided to hang out at a coffee shop.  At first she was quiet.  I asked her simple questions. She responded with one word answers. Typical for a youngling with autism.

We decided to go Christmas shopping for her mom and dad.  I asked her specifically what she might want to give to her parents.  After some thought, she replied, "Nail polish for Mom, and a I-pad for Dad." The I-pad was out of my budget, but with the idea of nail polish, we started shopping.

I asked her if she knew where we would find nail polish.  I realized that I had no idea where to begin to search.  My darling little granddaughter took charge.  She was hysterical.  "Come on, Grandma.  This way."  It became obvious that my granddaughter was not too sure where to go either, but we admired a myriad of delightful objects as we walked.

We actually wondered through several aisles before finding the right place.  She acknowledged, "Hair stuff."  She slowed her pace to look at the barrettes, combs, and headbands.  I inquired, "Do you like this stuff?"  She looked at me like I was from outer space.  Her response, "Yes.  Of course!"  She began a dissertation on what the items were.

I was surprised at how many different things there were to adorn hair.  My granddaughter touched every item she could reach.  Some were sparkly; others flowery.  We slowly made our way to the nail polish aisle.  Again, I was surprised at the variety of brands, let alone colors.  I just don't have time to pursue hair and nail paraphernalia.

My lack of knowledge bugged my granddaughter.  She gave me lessons in "girl stuff". In her words, "REALLY, Grandma!! (Sigh.) This IS what girls like. Sheesh."  I laughed.  I didn't know this "stuff" could be fun.  She picked out one color for her mom, and off we went.

So I need to continue my lessons with my granddaughter.   SHE is what made this lesson FUN.

Tumor Is Benign--Again--Yea!

Surgery went well--for the second time.  Tumor was benign.  Deja vu, but this was no illusion.  I will have two scars to prove that fact; they almost make a lightning bolt.  The question now is how to move forward.

All my boys are aware of my predicament--trying to reduce stress, and occasionally they try to make life easier, lighter, or happier in some way.  For example, we grind our own grain to make our own sourdough bread.  I found this smile in the flour, courtesy of Ryan.

I cherish these silly moments!   

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!

What Are You Going To Do When Mom Is Dead?

Cameron took this pic last summer.

That was the question posed by Ryan to his younger brothers!  Within that question, Ryan touched on an aspect of life for all of us:  facing my own mortality through the eyes of my children.

For any parent of a special needs child, the thought of how his or her child will survive is a constant thought and concern.  For me, this has become more of a reality.  I face surgery again for the second time in six months to remove a tumor.  The first tumor was benign, and I hope it is again.  NOT that anyone has indicated that this tumor is life threatening, but leave it to a teen with autism to reduce life to the basics!

My husband and I have tried to raise our children to be independent, knowing right from wrong, enabling them to make good choices, and living without fear.  Well, we haven't finished the job, and I want/need more time with my boys.  (Don't we all?)

So back to Ryan.  He questioned his brothers because they weren't doing their part to help with dinner.  They had also asked questions that bothered Ryan, questions about who had to do what when.  He got exasperated, and blurted out the question, "What are you going to do when Mom is dead?"  He continued, "You're going to have to do it yourself."

I was within ear shot, but I didn't say anything.  I wanted to observe how the younger two boys reacted.  I couldn't see their faces.  They must have been momentarily stunned.  Ryan did not relent.  His face continued to ask the question!  The younger brothers kicked into action.  No longer did they stall.  Instead of asking the questions, they volunteered to do the tasks. Within a few minutes, everything for dinner was done.

This is not the first time that Ryan has asked his brothers this question.  Ryan has become aware of my daily routine since he has graduated from high school.  Within the last six months, Ryan has matured greatly.  I've heard him say, "I better step up," when he sees me get behind.

Ryan is growing up, and he is becoming quite aware of others outside his world.  For any young adult with autism, that is an accomplishment.  For a mom worried about the future of her kids, that is a great comfort!

This brings a sense of peace!