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.

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?

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.

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.  

I get political again...

I get so angry when I go by the clinic on Sudley Road - the same people who run on a "pro-life" platform cut the social safety net for the poor and disabled every chance they get.  They debate the right to education, deny community based care, preferring locking people away in institutions.  How is that pro-life?  All politicians take money from big lobbies like health insurance and then they hem and haw when confronted with actually providing coverage and care for things like autism or other developmental disabilities.  The medical establishment works less for a cure or treatment for my son and more for diagnostic testing so people like Jimmy won't come into the world.  I guess it is cheaper and easier.  Yet no one acknowledges this, certainly not those pro-life protesters.  You can't say abortion isn't a political issue - I have heard that one before.  The 40 days of life protest that happens twice a year - before Easter and before Election Day.  By timing alone, they make it very political.

I post this not from the "I'm absolutely pro-choice" - the Jimmy experience has been life changing.  The world would be a sadder place if he wasn't in it.  Life is precious.  I firmly believe that.  Yet abortion is often what happens if a disability is discovered gestationally.  And the people who are out there are tacitly supporting this political agenda to deny care and to kill people who are considered "unsuitable", whether or not they realize it.  Why they aren't standing out at town halls and demanding moral consistency on this is obscene to me. 

One of these days, I am going to stop with Jimmy and I ask them about this. 

Back in the saddle again

Another lovely day at NVTRP

My son: one of the 47%

I am completely depressed at the thought of Mitt Romney winning this election.

I doubt he is a horrible man, but I believe he has horrible plans, horrible ideas for people like Jimmy.

Jimmy is one of the 47% Governor Romney referenced in his video.  He gets assistance from the government through Medicaid.  He is on one waiver and on the waiting list for the appropriate one that will provide long term care to see him through the rest of his days on this Earth.  The waiver that he will ultimately get will potentially provide him with supported, directed employment or, if he is not capable of gainful employment, day services to allow myself and his father to continue to work until we can afford to retire.  It will provide in home support to assist us with his care.  All of these things will come at much less to the American taxpayer than institutionalizing him, historically the option for people like him.

He would like to block grant it to the states and let them do as they will, without levels of care or maintenance of effort language.  Virginia - let's say my state does not have the greatest history of providing needed care or taking appropriate measures to ensure these needs are funded.  It took entering into a settlement with the Department of Justice for violations of Olmstead to get them to do anything.  And still there is a waiting list several thousand deep for these waiver services.  That is where we are currently.  We are fortunate to receive supplemental support right now.  This support will not be enough, however, to allow me to continue working, for example, when he graduates from high school.

Even though the Bible teaches us to help people like my son.  There are several passages about the needy in the Bible, but this is the one that sticks with me, Matthew 25:40.

"And the King shall answer and say unto them, Verily I say unto you, Inasmuch as ye have done it unto one of the least of these my brethren, ye have done it to me."

We have a responsibility to help those who can't help themselves.  My child is one of those people.  That isn't do say that we don't pay medical bills, that we don't or won't pay to care for him, but the fact that long term care for disabled and medically fragile is not covered by traditional insurance and is far beyond the needs of middle class families.  We contribute to this system through our taxes - income, payroll, every tax you can think of - and yet Mitt Romney doesn't think our children are worth helping. That is not a reach or stretch in my opinion.  It's a fact.  How can you propose the cuts he wants and not think that?

I read a great piece in the New York Times regarding what it means to be prolife.  By this definition, I am prolife - I am against abortion, against the death penalty, and for helping those who enter this world in need.  Governor Romney is not.  I think a lot of people are not, because it is a higher standard than most people measure themselves by.  Respect for life does not begin and end at the womb.  You would be shocked at the number of times people have made comments to me about Jimmy.  Certainly people like Delegate Bob Marshall make broad, stupid comments all the time (God's vengeance, my ass), but the number of people that ask everything from "what did you eat/drink/smoke while you were pregnant?" to "didn't you have prenatal testing" to saying that they "aren't sure if educating disabled kids is worth" the expense (a local elected official) to one person who said that I was irresponsible for bringing a disabled child into this world and that he tax dollars shouldn't have to go to caring for "that," pointing at him in his stroller like he was a pariah and not an 8 year old kid.  All of these things have happened to us in public.  Yes, really.  (That's doesn't even get to the R-word episode at Sea World three years ago...)  And no one ever wants to get me started on the writings of Ayn Rand and the love that Rep. Paul Ryan has for them.

After all this, you think I would be less shocked at someone like Mitt Romney and the fact that his ideas are so popular.  But I still am.  I can't believe I am sitting here a week out from the election as completely depressed as I am.  I know people vote for other things and no one votes for the sake of a kid like mine unless you have a kid like mine.  But I feel like I am watching his future slip away as he is broadly lumped in to this whole 47% and people seize on it like he is some sort of intentional leach on society.  He isn't a victim, I am not a victim.  Jimmy was born the way God intended.  He is beautiful and loving and perfect in a very sad and cruel world.  How can you believe in God and not want to help "the least of these, my Brethren"?

I kind of resent the fact that I don't have a choice when I go vote in a week - I have to vote for Democrats because Republicans have taken this stand against people like my child.  It isn't solely a Mitt Romney thing - it's a Republican party thing.  Why are these people, who seem to think they have cornered the market on the "respect for life and God" so entrenched in the notion that people aren't worth helping.

(Yes, I am writing from a perspective of pure emotion.  I think logic left me after the first debate.)

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.

CNN Romney/Ryan Medicaid article

From CNN: "An Urban Institute analysis of Ryan's budget proposal from last year found block grants would lead states to drop between 14 million and 27 million people from Medicaid by 2021 and cut reimbursements to health care providers by 31%."

Ayn Rand Fanboy for VP

Paul Ryan loves her.  She believed in eugenics and "Rand dismissed the feminist movement as "false" and "phony," denigrated both Arabs and Native Americans  as "savages" (going so far as to say the latter had no rights and that Europeans were right to take North American lands by force) and  expressed horror that taxpayer money was being spent on government programs aimed at educating "subnormal children" and helping the handicapped." (Article here.)  I could have stomached Romney before (he might have been a good president), but with Ryan, I see no future for my child or our family.  I have already had people express these sentiments to me (strangers and acquaintances) before, that my son was a waste of tax money, that he should have been genetically testing and dealt with.  With Ryan, I am starting to feel a little like "The Handmaid's Tale."  The one thing I have taken from this weekend's happenings: we need a third party in this political system that represents the center thinking and not the extremes.  We need a little sanity. 

Obama and Romney Need to Adopt Autism Platform

The Autism Society of America has met with Mitt Romney's campaign and will be meeting with President Obama's regarding a platform of policy ideas to be supported by both campaigns.  A campaign's ability to adopt these idea in total will personally be my deciding factor for my vote.  I encourage other families of children with autism to insist to both campaigns that support our children, our community of self advocates, and our families living with autism.  I would also encourage anyone running for national public office (I'm looking at you, Congress) to adopt this platform as well to affect meaningful change for people like my son.


From their website:


The Autism Society encourages each presidential candidate to support the following ideals:

1.  A person living with autism or another developmental disability must be assured the protected right to quality education, employment, housing and services. This right must be recognized by federal and state governments. 

2. Medicaid funding must not be cut, as it is the primary financial support for individuals with developmental disabilities. Reducing Medicaid funding will drastically hurt those individuals whose lives depend on Medicaid’s health insurance provision and community support funding. 

3. A person currently receiving Medicaid for community services should be able to continue to receive that support when he moves to another state. No individual should be denied the right to move to another state due to a job or support need.  

4. States should be allowed greater flexibility to use federal funding for outcome-based care and must be required to show measurable progress. The Autism Society defines progress as advancement toward self-sufficiency, independence and autonomy. 

5. Autism must be treated as a whole body condition. Health insurance companies must provide coverage for other services in addition to medical treatments, such as behavioral therapies, which are often very expensive but can have very positive outcomes for individuals on the spectrum. 

6. Individuals and families living with autism or another developmental disability should be provided tax savings or credit opportunities to place money in an account that can be used for services they need.  We strongly urge that the passage of the ABLE Act be a priority of any person seeking the office of President of the United States.

7. Bullying and restraints and seclusion that harm students at school are very serious issues that need a national solution right now. 

8. The high unemployment of adults with developmental disabilities must be a priority to be addressed by government agencies and the private sector. All individuals should have the opportunity to obtain meaningful employment based on skill level.

9. Federal housing, justice, employment and other government  programs that are for the general public should be required to prove they do not discriminate against individuals with developmental disabilities. 

10. Other government agencies and departments, and not just Health and Human Services,  should have a seat on the Interagency Autism Coordinating Committee, which brings together public and private entities to coordinate autism services and support programs nationwide. The Autism Society urges this council to address the following needs: transitional services, living support, the growing socioeconomic disparity preventing people from accessing a diagnosis and vital autism services. All individuals with autism should enjoy protected civil rights.  

Up All Night

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

Mothers of autistic children make less money...

I guess I am one of the lucky ones.  Rather than give up my career when my son was diagnosed, I was able to continue working, even finish graduate school, during the diagnosis and after.  It hasn't been easy. I realigned my professional ambition from what I wanted to do (be an academic librarian at a college or university) to a job that allowed me to be close to, home for, and generally more available to my children. It was the right thing to do for Jimmy (really both boys) and I have come to love my current setting almost as much as the university, even though they are worlds apart.  

Regardless of where you work, I don't think the mother of an autistic child can continue to work without a completely compassionate employer and supportive colleagues.  I have been extraordinarily fortunate in that regard.  You are on call, for everything for soiled clothing to negative behaviors to reading the tea leaves on illness because the school nurse can't take a temperature on your moving target.  You are also a defacto case manager, coordination education, therapeutic services, medical care, and even sometimes hiring and staffing of long term care.  It's no wonder many women either don't work or don't work to the degree that they would like outside the home.  Motherhood is a full time job for everyone, with an insane level of complexity dictated by your child's situation.      

DOJ Settlement in question???

A few months ago, I blogged about the DOJ settlement with Virginia regarding its institutions and waitlists.  The settlement has not been signed by the judge yet and several parents with adult children in training centers have sued to block the settlement.  Judge Gibney has asked for public comment.  I drafted a letter summarizing why I think the signing the settlement is important to my son and our family.  Cut and pasted below.  If you have concerns regarding the settlement, I encourage you to write a letter to Judge Gibney.

Honorable Judge Gibney,

            My name is Rachel Kirkland.  I am the mother of Jimmy Kirkland, a ten year old with moderate to severe autism.  We are on the IFDDS waitlist, sitting right around 647.  While Jimmy is not cognitively disabled, he is non-verbal.  He suffers from hyperactivity, anxiety, and is diagnosed with partial complex seizure disorder.  He is what we call a runner, the kind of child that slips off if your back is turned.  He is a client of Project Lifesaver in the Prince William County Sheriff’s Office and wears a Lojack bracelet at all times.  He is temporarily served under an EDCD waiver that really sustains him in our home, which is our greatest wish. 

We cannot manage Jimmy’s continued care in our home and community without waiver services.  There are additional hours and services that we need in the IFDDS now and certainly in the long term.  When he graduates from high school, if he doesn’t have the needed services in place, either my husband or myself will have to leave our employment long before retirement to care for him.  An institution, for someone like him, isn’t a safe option.  He has no boundaries and limited communication skills.  His elopement issues would likely not be managed by supervision and Lojack, but by overmedication and restraint. 

In Jimmy’s current setting, he is supervised at all times.  Moreover, he is a member of the community, participating in not only school, but also recreation opportunities such as adaptive swimming, Miracle League baseball, and therapeutic horseback riding.  He likes to go to Target, McDonalds, the park, and the library.  He is better known in the community than his gregarious eight year old brother Jacob.  Most importantly, he is a valued and loved member of my family.  He is adored by his brother, father, grandparents, aunt, uncle, and cousins.  As his mother, I do not think my life truly began until the day I was privileged enough to bring him in this world.  My children are the best thing that ever happened to me and my experience with Jimmy has shaped my life into something extraordinary.  As difficult as the journey has been, it has been a blessing.

We wholeheartedly support the Department of Justice settlement.  Jimmy shouldn’t be ripped from his community and family for lack of appropriate supports and care in a community based setting.  Yet that is a future that he faces unless Virginia commits its resources to creating this care.  It is Jimmy’s right that he continue to be supported living in his community.  Not locked away, not restrained, not hidden from view for convenience.  Please sign the DOJ agreement so that Jimmy and others like him might continue to live a safe, happy and meaningful lives in their community, near friends, family, and love.  If you want to see what it looks like, please feel free to come up for a visit. 

I thank you for your time and consideration.

Sincerely,

Rachel Kirkland

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...

Entering as strangers, leaving as family...

A great article about the experience of changing ABA therapists coming to your home and the tremendous impact they have on everyone.