Why Music Is Everything

For as long as I can remember, music has been my greatest hobby and passion.  I started going to concerts in my early teens.  Thirty years later, I have not stopped yet.  I have no talents of my own in this area, but readily acknowledge that I have lived my life with a constant soundtrack.  In my earliest memories, it was Fleetwood Mac and The Eagles.  In my teens, it was Berlin, Depeche Mode, and all that on KROQ.  When I came back East, my favorite haunt was the 9:30 Club, where I saw Alison Moyet, Book of Love, Matthew Sweet - all back on F St, NW.  99.1 WHFS was constantly in the background.  When I gave birth to Jimmy, for whatever reason U2 was stuck in my head clearly.  "Beautiful Day."  I still get emotional when I hear that song.

For the past year, the musical touchstones in our house have been two brilliant bands, Capital Cities and Fitz and the Tantrums.  The bands are passions I now share with Jacob, my soon to be 11 year old.  We have seen both bands three times this year and are heading towards our fourth in early November.  Jacob has had a good time with it.

On October 30th, the day after his tenth birthday, he went to see both bands together in his first trip to the 9:30 Club.  At the end of the Capital Cities set, he was given the drumstick.  He got two signatures that night.... Ryan Merchant and Spencer Ludwig were just so nice as he was leaving.

He finished the signatures of the rest of the band off at Sweetlife, visiting them backstage.  

He had a great time...  Spencer has made such a positive impression on him that for his first year in band, he chose trumpet.  

When this picture was taken, 2 Chainz was playing.  Jacob was all excited because Spencer had come out after the CC set and was dancing about 15 feet away.  Sweetlife was an amazing day.

The next month, Jacob skipped the class party after the fourth grade awards ceremony to see at Fitz and the Tantrums in Charlottesville, just shy of a two hour drive.  Clearly he made some friends and appreciated the generosity of his crush, the beautiful and talented Noelle Scaggs and fantastic drummer John Wicks.

Where he was up front, center, in front of Michael Fitzpatrick himself.

And got a great photo pre show as well.

These two bands have become music that we love and share, and going to their shows are the mother/son dates that are just so amazingly special to us.  For his 11th birthday party, we have six tickets to see Capital Cities and see which of his friends' parents are willing to let their fifth graders skip Chuck E Cheese in favor of a DC club.  His birthday present - Fitz and the Tantrum tickets for the following week!  His birthday wish - a hug and a photo with Noelle Scaggs.  

Jimmy has become quite the music fan as well...

In his earliest diagnosis, sensory issues were such an issue that I thought listening to music in the car with Jimmy would be an impossibility.  Concerts still are (though I am tempted to see if someone would let him go to a sound check), but his love of music is quickly rivaling his brothers.  His tastes are even more eclectic.

Deadmau5!

Florence!  The only CD allowed in my car for a year.

And of course Jimmy's spirit animal Bjork, who lulls him to sleep with "All is Full of Love."

He has finally embraced the bands of choice in this house, getting ahold of my iTunes password and downloading the entire "Safe and Sound" remix album and has sung the song from beginning to end. To understand how impressive that is... he is non verbal.  A child doesn't talk, but will sing Capital Cities.  Yesterday, he finally embraced Fitz and the Tantrums and played them for six hours straight on the computer.  But only "Pickin' Up the Pieces."  Maybe that is a sign that we have played "More Than Just a Dream" a few too many times in the car.  Why he still runs around the house humming "The Walker" but won't let me play the album in my car anymore is just beyond me.

Communication for children who are profoundly autistic is difficult to come by.  But our collective love of music has given us a common language and experience that we all share, much to my surprise.  It is deeply gratifying to have that now.  And I am beyond grateful to those who sacrifice steady paychecks, time with family, and a conventional life in the name of sharing their gifts with the world.  I look at my kids and know we are all richer for it.

Eeek!!!!! Has it really been that long...

I haven't posted in nine months...

I can't imagine anyone reads this anymore, but I miss the catharsis of writing about... everything.  So I am testing the waters again.

It's another school year, one marked by pronounced change.  Jacob is in his last year of elementary school, but Jimmy has moved on to middle, and I have switched buildings to another school as well.   Change is exciting, anxiety provoking, stressful, and sometimes exactly what you need in life.  Jimmy and I are settling to our changes pretty nicely.

Here's to a great year!

Vacation winding down...

Jimmy has been wandering around the house repeating "School Monday" and "Audrey," the name of a classmate.  He knows what is coming.  I am hoping for no more snow day interruptions - he finds those more disruptive than planned breaks.  Here's hoping he doesn't dart from the bus.

It has been a fun filled break, with trips out and about, visits with his favorite aide Erica, and a mall outing or two.  We took him without the stroller - it was brief and there were two parents attending.  Of course, he idea of fun is going to the Apple Store (which was relatively uncrowded) and playing with the same iPad he has at home.

He got a couple of stares when he squealed (one college aged guy just stared, walked away, turned around, and stared some more - seriously annoying) and his Project Lifesafer device gave the sales girls at Forever 21 (his favorite store since the tile sparkles) because it set off the alarm coming and going.  It was a brief trip, a little stressful keeping him contained, but otherwise successful - the ultimate measure of that in how much fun he had out.

Thanks Kelly Vrooman and Sprout!

Jimmy can't stop smiling!

Back in the saddle again

Another lovely day at NVTRP

Scenes from Fall 2012...

Onward to Christmas, but first a look back...

United Way/CFC Time

This year, please consider giving to Northern Virginia Therapeutic Riding Program!!!!

Jimmy Cast-less

I realized when I updated my blog, I didn't do any cast photos. So I will catch up now.

Up All Night

Really need to see Jimmy's doctor about sleep medication again.

Where We Are Currently

Back in pull ups.  That's the long and short of it.  We have tremendous regression in toileting and all sorts of behaviors.  Every step forward feels like five steps back now.  Still working hard in school, growing like a weed, but back sliding in stims or the bathroom or the OCD.  It has been a frustrating couple of months.

Robert Wood, Jr Found Alive

I have been walking around in a fog for most of the week, following the story of Robert Wood, Jr., the 8 year old boy with autism in Hanover, about 90 minutes south of where I live.  As the days drug on the end of the week, my hope faded for his safe recovery.  I had read that the search dogs kept losing the scent at the river's edge.  If you follow news about children with autism who wander from home, you will notice a good number drown.  Given everything that I heard, the ending that came today was more than an a miracle, if such a thing is possible.  I can't wrap my brain around the fact that child is alive after six days.

I don't know his mother got through it.  Jimmy has wandered about a half a dozen times now.  Never directly from me.  Last Thanksgiving, he was with my mother in Macy's and I was in another store with Jacob and he slipped out of the adaptive stroller and wandered away.  We had no idea where he had gone. There were four exits out of Macy's.  Three went out into the parking lot, one into the mall.  The whole ordeal was a half an hour.  Jacob had run off once at Fair Oaks and I was scared, but he knew his name and I knew he hadn't been taken - he had gotten cheesed off and sprinted.  Someone grabbed him and brought him back to the information desk where he got screamed at.  He stood a chance on his own, even at his young age.

Jimmy is a different kettle of fish.  No sense of danger, no ability to communicate, and I don't have any real idea how he would react if a predatory person approached him.  I tried to keep calm to deal with Macy's employees, 911, the police - if I lost it, I would have done Jimmy no good.  But my body had such a physical reaction to the stress, it was insane.  My pulse raced for a half an hour.  I felt physically ill, shaky.  (I honestly don't know how Robert Wood's mom kept it together for a week.)  I had no idea how long it was beginning to end at the time, but every muscle in my body was tense.  I kept my mind working, but I was absolutely sure that I would never see my son again.  I could imagine that he could make his way safely back to me.  The only time that he did anything close to wandering was a time he refused to go into Red Lobster, instead trying to sprint on to Sudley Road.  I straddled him until two female employees of the fast food place next door came to help.  Eventually my husband came as well.  But if I had moved, my kid was intent on running into the street.  I still have no idea why.  When he ran at the mall, I was sure the same thing would happen again.

When the Macy's employee drug him back from the food court, I let out a sound that I still don't think was at all human.  It's been a year and the anxiety of that day hasn't left me yet.  He has bolted in our own neighborhood as well.  You still have the same fear for his safety with cars, but a much better idea where he is going and a lot of people who know who he is and that he should never be anywhere alone.

After Thanksgiving, I faxed over an application to Project Lifesaver at the Sheriff's Office.  In December, Jimmy took Officer Qusenberry on a foot chase, so he took a second one.  I even checked to confirmed receipt.  I was told that I was waitlisted.  During this sheriff's race, I asked about the Project Lifesaver program of one of the candidates and got a whole debate started about it.  Then I asked Sheriff Hill himself at a candidate forum the other night.  I heard from someone that they lost my application and someone else that they never received, but the upshot is they just got some additional grants and that Jimmy is about to receive his unit.  Next week!  The peace of mind is huge.  If he wanders away again, God forbid, it will reduce the search time.  Timing is everything, I suppose.

I imagine Robert will be getting a Project Lifesaver GPS unit shortly as well.  That child has angels with him.  May they continue to keep him well and safe.  I am astounded and grateful at the fact that this beautiful boy is still alive!!!

Jumping Around at the Jubilee and Clifton Day...

Part two of my fall photos...

Jacob flippingout...

I was very nervous when Jimmy insisted on doing the jump.  Even though he was in harness, I still worried, like Houdini would unhook himself in mid air.  He just jumped up and down and loved it.   

Jacob again...

One the way to Clifton Day...

Climbing the monkey tree...

Fall Photos - Manassas Park Fire and Rescue Open House and one from the Fall Jubilee

We love fall.  October is one of those months when we have every weekend booked.  Probably the most anticipated event is the Fire and Rescue Open House, followed by the Fall Jubilee.  We truly have the most fantastic fire department here in Manassas Park.  

What's up with us...

Jimmy - 4th grade and doing fairly well.  Except for the running and peeing everywhere but the toilet.  He has no aim.  Or he chooses not to use it.  He is a little more verbal and a lot bigger - medication changes already and another to come.

Jacob - 2nd grade, looped in with the same teacher as last year.  We love her, so it is a huge thrill.  A third of his class is with him from last year, along with six former kindergarten classmates and one friend from Pre-K.  It was very hard to keep the birthday party guest list sane this year.

Me - Sore from walking daily, really tired from the beginning of the year, knowing that it will be 2012 before I can catch up on my sleep.  But work is good, the boys have transitioned back to the year well, and life is pretty good.

That's the update.  I have some photos from the past several weeks.  I just need to get them off the camera.

Welcome to puberty...

Not that we are starting shaving or anything, but we just got back from UVA.  All of Jimmy's dosages are being changed as they are ineffective at present because he is hitting a prepuberty growth spurt and hormone change.  I have dreaded this day... autism isn't cute anymore as Jimmy grows into a young man, things get murkier as the waters change again, and you don't know what is going to happen next.

Enjoy the ride.

Cox Farms

Our annual trip out...  Jimmy went on the hayride without a fight and went on the biggest of the slides.  A great trip...

I've been bad...

I have not kept up with this blog as intended.  A few quick lines to bring my eight friends reading up to speed...

• Summer's good.  
• Have done DC, a couple of museums, and one theme park with the boys with one more to come this week, with free tickets that Jacob won for a reading program.
• Jimmy finally got into this therapeutic riding program.  Very necessary structure for him.  He has turned ten (seriously?!), but there is a serious uptick in both the running and his accidents, so the little structure he gets right now helps him focus a bit better as well as becoming more verbal.  He loves the horses.
• I really need to get a ton of pictures off the computer downstairs.  

That is all for this early hour.  More to follow.  Really.  I promise.

Okay, I need to catch up...

It's been a busy couple of days... a few photos off my phone...

A Big Week

Hopefully I will get around to get the pictures off my phone by the end of the week.  We have a big one planned, so I want to share the photos.  Okay, maybe the first three days aren't interesting, but on Thursday the boys and I are going to Kings Dominion with tickets from the Autism Society.  On Friday, Jacob and I have a big trip to DC planned with a tour of the Capitol.  The following week, we have White House tickets!  I will try to get the zoo pictures up this week as well.

Backpack, Backpack

Last day of school, I threw out Jimmy's backpack in the trashcan and got online to order him a new one (Pottery Barn Kids was having a sale.) I guess I should have waited for an appropriated transition. He went outside to get the backpack in "commando fashion." He never saw me throw it away, so I don't know how he knew. It's in the washer now. At least the cat came back.  When the new one comes, I am driving the old one to the landfill.


When I got him back to his room I saw what was on his computer.  Inspiration.