Happy birthday Jacob!!!!

Tomorrow, 11 years ago, I gave birth to my second child.  Jimmy and Jacob were born roughly 28 months apart.  On October 29, 2003, the word autism wasn't really in my daily vocabulary.  I thought I was giving Jimmy a best friend and playmate.  And I did.  But in Jacob, I gave him a voice, an advocate, a defender - a little big brother.  No child is going to go through life not resenting having a brother with a disability 100% of the time.  With Jacob, that resentment is very rare.  He loves Jimmy deeply and is fiercely loyal to him.

This blog started and remains an autism blog, but I would be remiss if I celebrated my dear son solely through its lens.  Jacob is a sweet, sensitive soul who sees the world in amazing ways.  He is as comfortable in a room full of adults as he is kids.  He can talk to anyone and most walk away pretty amazed at his ability to be interesting and articulate.  Jacob is smart as a whip and alternates between unnatural focus and the realm of complete squirrel!

Jacob has a growing collection of musical souvenirs from our many concerts together.  He has his own tastes, but has done more than embrace mine - he has claimed them as his own.  His birthday party - Saturday night to see Capital Cities with friends.  His birthday present - the following Saturday with me and Tori to see Fitz and the Tantrums.  He is already considering two important questions - what to wear and what flowers to bring for their singer.  Jacob is already a self professed ladies man.  And he shares our love of travel and is anxious to use his passport again.

I look at my son and can't see who exactly he will be or what he will do, but I see no limit in what he could do.  I know that this 11 year old will rapidly become a teen.  That always holds the distinct possibility that he will not want anything to do with me for several years.  I am not sure I am ready for that.  For now, I celebrate all that my compassionate, smart, witty son is.  Happy birthday Jacob... I love you with all my heart.

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!

Scenes from Fall 2012...

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

Isn't it a Rush - Big Time Rush in Fairfax, VA

Given how my afternoon at work went (standing outside for an hour in the rain during a building evacuation), I was unsure how my evening out with Jacob at Big Time Rush would go.  There was a while where I didn't think it would go at all.  It was still raining when we got to the car, the noise of the raindrops was muted by the pleas of my eight year old, begging to know if we were at the Patriot Center yet every three minutes.  Mercifully, we arrived in 35 minutes, so I only heard it ten times.  If he had one more minute, I'm convinced...

After we were patted down - what is an eight year old going to carry into a show, a DS or something - we found our seats, so high up, Jacob initially sat on the floor in front of his chair for fear of falling.  Once coaxed into his seat, he waited somewhat patiently for the band when Jackson Guthy took the stage.  He thought he'd been duped - "Who's that and where is Carlos?"  I took for granted that he understood the concept of opening acts.  Once explained - "That sucks.  I have to wait longer for Big Time Rush??? - he asked me if I knew who the second act was.

When I said One Direction, he asked me what they sang.  I drew a blank.  I vaguely knew they were British and my best friend's daughter was posting her dismay at not getting to be at the show to see them all over her Facebook page.  As I began to email her pictures from the show, I could vaguely make out her screams from twenty miles away.  As their intro film and backing tracks started to play, it started to click for me who exactly they were and that theirs was that infectious ditty that is on Sirius all the time.  I could do this.  Jacob made this same connection and was very excited.  Then we both looked at each when we realized every girl in the arena was screaming.  The teenaged scream of the female of species is high pitched on its own.  Multiple that by 4000 and it had my eight year old curling up in the fetal position on his chair.

I rubbed his back and he started to get a little more accustomed to the volume and mellowed.  I realized this tonight was the missing piece on my concert going resume - the boy band show.  I had been a fan of pop boy bands forever - NKOTB, BSB, N'SYNC - and that this show on Nickelodeon that clicked with my eight year old son is completely embraced by 13-17 Abercrombie and Fitch set.  When the BTR count down clock started, I don't think my son would have left his seat if the fire alarm was going off - he was that excited.

BTR's set was phenomenal.  They are incredibly talented guys with a ton of charisma, some great production values, and they can sing.  It was more than I thought it could be.  I have been going to shows for over 25 years.  There are a bunch of young guys at the beginning of their career and completely marketed to children.  I didn't think they would be able to engage me like they did.  And my son had the time of his life.

Time to started get the coins out of the seat cushions... they are coming back this summer.  I really hope I can take him again.  We really had a fantastic time together.

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.

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.

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.

ADHD has joined Autism...

At my house.  Jacob was diagnosed a few days ago.  I met with the school to see where we stood and while it impacts his behavior,  it isn't negatively impacting his performance.  He started first grade reading at a high first/low second grade level, according to their benchmarks.  Now, it's fourth grade.  Crazy!  He is working on second grade math.  So I truly have the opposite ends of the spectrum now.  All over his IEP are the words, "This child needs to be challenged academically."  Mercifully, they didn't add "Idle hands are the devil's workshop and if you leave this one alone, he will play with matches out of sheer boredom."  The implication is there.  If he gets bored, he will get in troubles.

Hands full.  Officially.

Happy Thanksgiving

Probably the best photo I have ever gotten of the two boys.  Jimmy bolted off Santa's lap immediately afterwards.

The Dolphin Feeding

So, one of the first things we did was the dolphin feeding at Sea World. We got in the line, bought the fish, and briefly waited. We came in, DH took the video camera to try to get footage of us feeding the dolphins and we set to it. Jacob is doing okay, but I have one hand on Jimmy. With his free hand, he is taking off his socks and shoes, wanting to go for a swim. I am thinking this isn't going well. Jacob is pushing up on the edge to get closer to the dolphins, so I can see him going in too. One of the trainers sees me struggling and asks if she can help, looking specifically at Jimmy, who wants to swim with the fishes. I introduce Jimmy. The next thing I know, she blows her whistles and calls over our own personal dolphin to feed, pet, and commune with. It was truly amazing. We were over the moon and I was moved by her generosity. It was the greatest gift to both my boys, but most especially Jimmy.

Sea World

Sea World was just huge for Jimmy. It wasn't just that we went through every exhibit. Jimmy would drag us through multiple times. He was so excited to feed the dolphins, he tried to take off his shoes to go in for a swim with them. He would wake up every morning and look out the window, across the parking lot, towards Sea World, begging to go. He loved every bit of it. So did Jacob.


The holiday photo with Shamu...

Jacob in conversation with Zap and his elf friend. This was hysterical. They were street performing elves in the waterfront area and I think Jacob spent 20 minutes with Zap, just talking to him. It was just kind of amazing. Jacob still talks about him, asking if he's coming for Christmas. Forget Santa, it's all Zap now. Whoever this guy was, he is amazing. If you stumble across this blog, thank you for making my kid feel so special!


Jacob in the tank in the new Manta exhibit, under the coaster. Kind of cool.

More Universal Island of Adventure Photos

The Fantastic Car...


Jimmy wanting no part of the Spiderman picture.

After much delay, the Thanksgiving photos...

Okay, I know they are considerably overdue, but here is the beginning of the Thanksgiving vacation photos. We sort of didn't do much of anything this summer in anticipation of this trip and it certainly was worth it. We went to Disney World in 2006 and realized how we really missed the boat with Jimmy when we wound up spending hours at Epcot's aquarium. So, this was the Sea World trip with a day at Universal's Island of Adventure for Jacob.
Meeting Spiderman...

Jimmy running around If I Ran the Zoo in the Dr. Seuss area in IOA... Couldn't get him on many of the rides like we did at Disney, but he loved the play areas at Universal.

Jacob with Betty Boop...

Jacob as a Jurassic snack...

Parent/Teacher Conferences

Jimmy and Jacob both had great conferences. Jimmy got his first letter grade report card. Granted, he is on an functional academic curriculum, but he got all A's. I cried. IEPs can be so sterile, but A's. I understand an A. I have worked my tail off for many an A. I know this seems so dorky, but it is such a happy moment for me as a mom. Both of my boys are doing well.

Cox Farm Photos... story to follow