Oh, the guilt...

The music post, part two...

Jimmy's love of music continues to grow exponentially.  I am sitting next to him - he has my phone and is on YouTube watching Fitz and the Tantrums videos and live performances.  I am thrilled this love of music is shared by everyone in this house.  But knowing that I am taking his brother to a show that I think he would love to go to himself, but I can't muster the courage to take him along - I am feeling pretty horrible.  As much as he loves the music, the crowds would be more than he could handle.  And he would be more than I could handle - not just containing him in the chair and keeping him safe in the crowd, but how the crowd would interact with him.  

As much as I think the 9:30 Club staff would be as helpful as possible (they really are incredibly kind and welcoming to Jacob and have indicated that they would help in any way they could with Jimmy), I almost think a venue like the Patriot Center would be better.  They have the landing where they market accessible seating and I see lots of people with disabilities every time I go to the venue.   I just wonder how you get to that point.  Where do you take that leap of faith in trying something that big an experience?  If he loves music this much, I can't imagine live performances not being part of his life.  But it's a lot of money (a ticket for him, me and a caregiver to even have a chance of success) and work to get to that point.  

To get kids comfortable with the process of flying, carriers will sponsor trial flights.  I wish we could get a venue and a band to do the same sort of introduction for our community of fans.  

Ok, rant over...

News from the Honor Roll....

Which mom has two thumbs AND two sons with all A's for the first grading quarter?????

This mom!!!!!!!

Woot woot!!!!

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.

At a loss, in the best of ways...

I don't generally blog about work.  I work as a librarian in a public school.  I don't think it is good form to get into the details of children aside of my own, good or bad.  So I am not going to.  But I am going to say this.  I witnessed a bunch of nine year olds demonstrate natural, heart-felt compassion for another child who was very different from them.  I was moved to tears by their spirit, their words, and their actions.  It is easy to lose hope in the world.  I am grateful to children I worked with today for restoring mine to a level higher than I could have imagined.

I am blessed by what I do.  Truly.

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.

Another ADA legal action waiting to happen.... I give you Penn State!!!

So apparently PSU has limited parking due to construction, so their monied boosters get to use the ADA parking, disability or not.  The disabled?  Parking two miles away and shuttled on school buses that aren't always appropriately equipped.  Penn State must like paying lawyers.  And settlements!!!!http://www.pennlive.com/midstate/index.ssf/2014/09/some_upset_by_penn_states_deci.html

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!

Why what Disney is doing matters?

I wanted to address this point, but I remembered that this blogger really has said much of it...

That isn't to say that I don't have more to say.  I can always find more to say.  But this post is a good start.

IAAPA - What is it?

In all this Disney talk, you know what would really be of benefit - a standard set forth by their association that brings common accommodation standards to all American theme parks.  One that preserves access for those with physical, intellectual, and developmental disabilities in people of all ages and meets their needs while having some level of fairness for those able bodied people who have to wait in line.

I think the move from GAC to DAS has been a step in that direction.  However, it was poorly vetted by Disney with stakeholders and disastrously rolled out.  As a point of law, there are reportedly obstacles in access for the disabled (the kiosks in California) that undermine compliance with ADA.  There is no indication that Disney is interested in incorporating feedback from visitors or engaging with advocacy groups like the ARC, the MS Society, or others that represent and have knowledge of the collective needs of their constituents.  In order to avoid lengthy conflict and possible litigation, they need to regroup and reevaluate what is working and what isn't.  

I get a little suspicious of DC based associations - I truly believe their first function is to lobby for the corporate interest.  That said, the International Association of Amusement Parks and Attractions would be a fine organization to begin the dialog with and to get companies like Disney, SeaWorld, Six Flags, and Cedar Point to evaluate their existing programs and move to one common standard that would incorporate things like virtual queuing and educating groups to the law and the need for staff training while providing an opportunity for feedback from advocacy groups, physicians and therapeutic providers, and other stakeholders.  

I also think these advocacy groups, providers, and others who are knowledgeable or interesting in seeing how DAS is working at Disney should be shadowing families in the parks to see what is going on and how things can be improved for all.

Thoughts?

Realityblah's Rules of the Road

Since I am just starting blogging again after a long break, I guess I should explain why I moderate my comments.  It started as a spam block, but I have utilized a few time to not post comments.  From time to time, someone will leave me personal contact information that I don't think should be posted generally.  Sometime is to delete nonconstructive, anonymous or rude comments.  I won't block you because you don't agree with me - ask Chuck.  Chuck used to comment on my political stuff all the time and clearly he didn't agree with me - but he did so respectfully, using a consistent identification and IP address.  But if you post calling disabled parents whiners without a name, yes, I am not posting it.  If you want a dialogue about why I feel the way I do and share your viewpoints, I will do that all day long - as you attempt to be civil, respectful, and consistent and honest in your identification through profile, name, or handle.  If you are a lobbyist and don't declare it, I will call you out (that's happened before too...)

I have more respect who comes to me in person and says something outright hurtful ("Isn't there prenatal testing for that?" and "It's irresponsible to bring a disabled kid into the world and expect my tax dollars to take care of him.  You should have had an abortion." - experienced both) than someone being rude or dishonesty behind the anonymity of a keyboard.

My blog, my rules....

Jenny McCarthy's son is still autistic...

Still not my favorite person... I think her anti-vaccine advocacy is beyond harmful to children.  The rift surrounding this issue keeps families dealing with autism at odds and unable to work collectively for whatever "greater good" there is to be found.  But I would be pissed too if I was misquoted or my truth was misrepresented.

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.

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.