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!

I'm back...

We shall see for how long or how often.  I have been extraordinarily busy for the past year or so with work, parenting, and real life in general.  Sometimes you just get tired talking about autism - the experience, the diagnosis, the silly controversy...  I think I have been there with this blog.  But as I see families losing ground in this battle, I though maybe it is time to speak again....

We are long time Disney fans who have been heartbroken to hear of the disgusting abuse that parents and children are enduring at the hands of cast members in both California and Florida.  The disability accommodation system in all American Disney parks were gutted to "address" fraud issues that came to light last spring.  The tumblr site A Tragic Kingdom and a Facebook page of a California advocate have done an excellent job of keeping feedback of the largely negative experiences of families with this new DAS system.  There is some sort of perception going along with all of this that this accommodations are a luxury or, as one cast member told a family, "an indulgence."  The Americans with Disabilities Act is not an indulgence, it is the law.   From the U.S. Department of Justice website:

The ADA does not require affirmative action or preferential
treatment of individuals with disabilities.  Public
accommodations, however, are required in certain cases to make
reasonable modifications to their policies, practices, or
procedures when modifications are necessary to afford goods,
services, facilities, privileges or advantages to individuals
with disabilities.  See section 36.302 of the title III
regulation at page 35596-97, and preamble at 35564-65.  In light
of this requirement, an amusement park may be required to modify
its policies to allow an individual with a disability to be
admitted to an attraction without waiting in line, if delay would
prevent the individual from participating in the service because
of the nature of the disability.  

Ultimately, I think this will wind up with the DOJ and in the courts.  I have corresponded with them about this issue a couple of times and know that Disneyland and Walt Disney World are being looked at as many families are sharing their experiences with discrimination at these parks.  If the above interpretation is applied, Disney and other theme parks will get way more than they bargained for in the extent to which they must provide accommodation.  

My hope is that a balance between the needs of those with disabilities and those without can be balanced fairly and reasonably, in line with existing federal law.  But I don't think Disney is willing to do it without legal intervention.  The fact that people are being harassed by Disney employees, treated with a level of contempt reserved for criminals, is just making the situation worse for all involved.  I am also certain, in fairness, cast members are encountering hostile parents and caregivers.  Minimum wage park employees and "cast members" should be not be put in the position of interpreting the law or defining the accommodations needed without any sort of medical or therapeutic background.  

An easy fix to this is clarification of HIPAA - allowing parents and the disabled who wish to disclose medical records and physician correspondence in support of accommodation.  Currently, this is not only not required, but Disney staff won't even look at it if you bring one.  I bring a diagnostic letter and specific letter request and delineating needed accommodation every time and they refused to look, saying "it's against the law."  This reflects a severe lack of understanding of the law and illustrates that there will be no easy fix to this whole debacle and the disabled will be paying the price for the time being.

Edit:  By the way, I will gladly approve comments, even those negative, as long as they don't resort to name calling...  And are given with a name or handle.

Dancing in Isolation

A title of an old song I liked... but also how I feel so much of the time right now.  I don't know if it is really or depression is just a cruel mistress, but I am struggling right now with my place in the world right now.  

I found a great entry in a blog with an introductory paragraph that I completely identify with...

"Even the most social parents may have difficulty maintaining prior friendships after their child is diagnosed with autism.   As I think back on my journey, it is not that hard to see how the isolation insidiously crept into my life.  Looking at the nature of friendships, it is painfully clear how isolation can develop after your child is diagnosed with autism."

I feel lost a great deal of time, that I don't really have a place in the world other than as mother to my children.  That's not good.  Yet I am completely unsure how to move forward.  To compound things, I am clinging to a friendship that isn't completely healthy for me.  I am just down and frustrated.  I am hoping time to regroup with the end of the school year.  

Today's wisdom

United Way/CFC Time

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

Getting My Groove Back...

My project for the week... along with packing and getting ready for the new carpet and maybe painting.    I am going to try to rediscover some me time.

Since I am no good at it, I will let you know how it goes.

Baby, You're a Firework

Back from the Fourth festivities and up with the boys, I realize I have been away far too long...

Feeling a little melancholy, so I decided to tweak my blog and maybe start writing again.  The guys have a big summer - a trip to Orlando, Summer School, things worth talking about.  And maybe writing again will help me get my head on straight.

Let's see if I make it back tomorrow!

Up All Night

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

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.

Two links to read...

First is about how an autistic child was treated at a Mardi Gras parade...

And next is the overwhelming community response...

God bless Amy, Emily, and the wonderful people in New Orleans...

What a week...

The US Department of Justice came to a settlement with Virginia on its care of the developmentally disabled.  I watched this issue closely as I had some limited involvement with the investigation on the waiver waitlists - it took me two years to get on the IFDDS waiver waitlist and I had to drive more than an hour away to do it.  Turns out that I got some misinformation, but this is a process that was fraught with it in a system that is woefully inefficient.  I don't know how long it will be before we get help - they are making 450 slots (the minimum amount) over the next ten years and we sit about 200 slots after that until his number is up.  But it was nice to be in a room in Richmond with so many advocates and families elated for the change.  I want to keep Jimmy near me, even as I grow older.  I don't want to see him in an institution.  His future is still hazy to me - I don't know what it will look like, but to not see an institution as the most likely option is somewhat of a relief.

I think this weekend is defined by the probable loss of a friendship of longstanding.  I love my friend dearly, but I have been hurt badly.  In large part, that is due to how I chose to take the slight.  That my sensitivity, my reaction, my issue.  But when you look at something and it starts to feel like a pattern... how many times do you live with the sting before it starts to burn?  I don't have much of a social life and have many more acquaintances than I do true friends.  I do not taking the thought of ending any relationship lightly.  I wish I had something more poetic or thoughtful to say, but... this sucks.

A thought

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.

DC's Shakes, Rattles, and Rolls

Mother Nature and I are not on speaking terms.

I was born and for the most part raised in Southern California.  With the exception of a brief sojourn for three years to northwest Indiana, I lived in suburban Los Angeles, the high desert, and San Diego prior to moving to the DC area twenty years ago.  Throughout my youth, earthquakes were a part of life.  Shortly after my first birthday, we experienced a 6.6 quake.  The epicenter was the community where my mom's parents lived - their home and neighborhood sustained heavy damage.  Olive View Medical Center, only open for a month, largely collapsed.  My other grandmother worked there.   The VA Hospital also sustained serious damaged and loss of life.  Several freeway overpasses collapsed.  My mother told me that she had a hard time staying on her feet getting to my crib as I napped as the world shook around me.  I never woke, but I felt the effects for years.

I remember the smaller quakes, the way the earth shook.  I remember the drop drills, they way we practice tornado or fire drills, we would practice dodging debris under our desks.  Occasionally, the room would shake a little and you went under.  Nothing serious in my childhood, but you were always prepared.  You arranged your rooms so nothing could fall on you as you slept.  Every time you went to Grandma Mayes house and you wanted a glass out of the cupboard, you had to undo a latch on the front of the cupboard and a hook on the inside of it.  We laughed at her - it was a great deal of effort for a drink of water.  She never wanted to sweep her entire kitchen out of her floor again.  After losing so much and spending such time and care in rebuilding her home and belongs, she wanted to minimize any future damage.  

I grew up afraid.  Even the three years we lived in Indiana and experience tornadoes for the first time, I always appreciated the fact that at least you had a few minutes warning to scurry to the basement.  Wildfires, as long as you aren't stubborn and you leave the first you are told, you might lose your property, but you won't lose your life.  Same generally goes for hurricanes.  But there is an unpredictability to earthquakes.  The weatherman can't tell you when the fault lines that run under our planet will come alive and what the end result will be.

It is certainly more expected in California.  It's part of the culture.  The south looks to the north, north to south, each waiting for the other to have "The Big One."  My sister Tracy lives in Washington State.  From her backyard, you see Mt. Rainier, one of the most dangerous volcanoes in the world.  You expect tremors like we had today... there.  Out West.  Not here.  It's part of the reason I choose not to live there.  I despise the uncertainty of it all.  Some people who live in parts of the world where earthquakes are common find themselves able to coexist with them.  I never was.

They scare the part of me that remembers hiding under desks, the part that was waiting for "The Big One."  Remembers what the destruction of a 6.6 looks like and how long it takes to rebuild.  I am really gratefully that the damage was so minimal for the area today.  I hope whatever fault line woke up this afternoon to rumbles gently goes back to sleep for another thousand years.  And I am thrilled that my own children are marvelling at today with more wonder and curiosity than fear.

As for my Grandma Mayes... 23 years later there was another quake.  Northridge, a community I had called home for several years, was the epicenter for a strong 6.7.  Northridge and Sylmar are only a couple of miles apart and Grandma Mayes suffered some damage again.  Lost her dishes with nowhere near the mess.  She put the trash can up to the cupboard and swept everything out.  She was a clever lady.

Unlikely that Mother Nature.  Nope, I am still mad at her.

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.

So... Natalie Munroe...

I guess I was snoozing in February because I am only hearing now about the blogging teacher who makes fun of her kids online (on work time, no less.)  Aside from questioning her choice of profession, I am most disgusted by her use of a cartoon - she took it down, but here is the gist of it, in a quote from a local Patch...

A piece of clip art that accompanied the post particularly enraged disability advocates and school board members. It depicted a special-needs school bus and read, “I don’t care if you lick windows, take the special bus, or occasionally pee on yourself, you hang in there sunshine, you’re friggin’ special.”

She attempted to defend herself on her own blog, though it is interesting to note that the relatives with disabilities that she trots out to highlight her "sensitivity" on the subject have physical disabilities.  As the mother of one who more apt to pee, along with other behaviors that go along with developmental disabilities, I can tell you that people don't view these disabilities all in the same light.  If she had any sensitivity, she wouldn't have used the cartoon and comment in the first place.  Or she would have issued a true apology to those who would be offended.  I am even more floored that an educated mother of young children (she is the mother of a toddler and newborn, apparently) would have such vileness in her heart.  The health of your children isn't promised.  Jimmy was a healthy, normal newborn - that gift ended before he was a year old.  In an instant, someone like Natalie Munroe could find herself in these shoes through the hand of fate.

I doubt anyone like that thinks that deeply before speaking (or blogging) so harshly.  She might want to do so in the future.

Edit:  So I found a copy of the offending page with comic on a British news site.  It's small.  Yeah, it's offensive, at least to me.  "If You Can't Say Anything Nice..."  Indeed.

Summer Starts With a Bang...

A week ago, I came home to Chief Evans, one of his officers, and both of my girls in the driveway.  Jimmy had bolted from the yard on one of the ladies.  She lost sight of him and called her bestie for help.  They drove around the neighborhood and called me to report him missing.  I called police, though I was fairly certain that he had gone down to the school.  It wasn't much of a comfort to me, that instinct.  Anything could happen.  Apparently, a teacher caught him down at the school and was bringing him back up the street when the police got to our street and the girls got down it.  It was all over but the crying (me.)  

Elopement, running, is the most dangerous behavior that autistic kids have, in my opinion.  They are dangerous to themselves and have absolutely no appreciation of the risk or any danger they might be in.  Read missing boy story closely, especially ones found drown... often they are autistic.  They had a fascination with the outdoors or water and let themselves out.  It is why Jimmy is so exhausting and needs one on one care.  He's a toddler in a nearly ten year old body who is every bit as smart in many respects.  He just lacks the judgment.  We are switching from a sliding glass to a french door, which has a better lock.  We are on the waitlist for Project Lifesaver and we are finally considering an assistance or therapy dog.  Anything that can help for those hours during the day when I have to shut my eyes.  I fear the night. 

I loved this... I too often feel the disconnect.  After posting this on Facebook, I realized I was not alone.

Why autism moms act the way they do

I ran into a friend at the dog park this morning and she asked me if I was "OK".
"When I saw you last week, you looked like you were on the verge of tears."
What was going on that day? Oh yeah... 

In the spirit of Chantal Sicile-Kira's recent article Why do children and adults with autism act the way they do? in Psychology Today, I thought it might be helpful to to write an explanation of another mysterious cast of characters in the autism community: Autism mothers.

Why to we act the way we do?

Here are just some behaviors you may see in moms like me and what they could mean:
1) We cry spontaneously for what appear to be weird reasons. Our specialty is crying in public and at IEP meetings, and let me tell you, it is not pretty.
Cashier at 7/11: "May I help you?"
Autism Mom: sniff, sniff, sob..."I'm not sure.Thank you for asking. I'm just feeling emotional right now."
Why do we behave this way?
a)We aren't sleeping
b)Our already busy and emotionally intense days are punctuated with phone calls that catch us off guard and hurt our feelings.
c)Our child does something amazing or really funny, we tell a friend and it is clear they don't get why it's such a big deal. We hold it together until the nice cashier at 7/11 say's "May I help you?"

2) We join a book club. We think it's a good idea to do something intellectually and socially stimulating,and then we never show up.
Why?

a) Evenings are hard. Our kids need us. We are drained.
b) We did not read the book and worry that we'll say stupid things just to sound smart.
c) We are nervous about hosting book club at our house.

3) We are socially awkward. We didn't used to be, but now we blurt out bold statements like "Hysterectomy? I had mine vaginally. What about you?" (or worse "has your wife had one yet? ")
 Why do we behave this way?

a) We are immersed in the world of quirky kids. We're out of practice.
b) We're tired
c) We feel so lucky to be invited places that we are manic.

Read more: http://www.sfgate.com/cgi-bin/blogs/lshumaker/detail?entry_id=90473#ixzz1OvjHRSU6

The Electronic Leash... An Infringement or a Necessary Evil

I heard about Alamo Drafthouse Cinema's PSA on texting and cellphone use during movies. 



While this young lady's delightful attitude obviously helped her get shown the door (and the serving of alcohol at this theater and whichever doorstep she darkened next only served to enhance her mood), I think blanket zero tolerance policies are foolish and designed drive out certain kinds of clients, whether management fully grasps it or not. 

Because of Jimmy's level of need, I always have my cell phone wherever I go.  Even if he is in the care of an attendant, I am legally responsible for him.  If he runs off, I have to be able to contacted immediately.  If he has a seizure or climbs out a window, I have to know.  Really any parent does.  Does the Alamo not allow parents of special needs children to be in contact with their caregivers?  Does Tim League not allow parent of typical kids to text sitters if they can't find the wipes?  How draconian is management about this?  I hear the suggestion that somehow parents should forgo outgoings until kids are older for these sorts of reasons.  But what if you children, for all intends and purposes, aren't going to grow up and leave the nest.  If they require a lifetime of care, does Tim League's policy preclude Austin and other Texas parents of special needs children the ability to see movies in his theaters?  Is this policy, to some degree, discriminatory?  I understand the need for reminders to be respectful of others, but to nanny people to the point that a certain group of people very possibly can't walk through your door seems a slippery slope.