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. 

Swimming lessons

Chillin

Thanks Kelly Vrooman and Sprout!

Jimmy can't stop smiling!

Today's wisdom

Cost savings strategy

Start them early

Back in the saddle again

Another lovely day at NVTRP

Waiter Michael Garcia - An American Hero

I love this story!

I have seen so much ugliness when I have taken Jimmy out in public.  People like Michael Garcia give me immense hope.

A pox upon your house...

So of the many childhood scourges, the dreaded lice made an appearance over Thanksgiving weekend. Yes, my children bathe.  Jimmy had such a mop of hair, I guess it was bound to happen.  We used Nix and washed, vacuumed, and cleaned.  Then we used clippers and sheared him.  Much like you do a sheep, actually.  He got sent home from school today, saying there were still a few there, so we did olive oil and combed as well.  It seems to be much better, but wow, is it bruising to do anything to that child's head by yourself.  Seriously, I am bruised on my arms.  He is getting nothing but stronger every single day.  His brother has been treated twice as well - much better after the olive oil thing, I must say. The nurse actually said this little buggers are getting resistant to the chemicals in things like Nix.  Superbugs from antibiotics, superbugs from pesticides.  If you stop to think, it is scary.

I am not bringing those combs back around without some help...

Scenes from Fall 2012...

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

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.

An Open Letter to The Killers

Wow, I thought this would be easy to write...

My name is Rachel.  I am the mother of two boys and a huge fan of The Killers.  I am, however, not the only fan in the house.

My children are ages 8 and 11, both are huge fans of the band.  My eight year old Jacob and I have tickets to see you at the Patriot Center in Fairfax, VA on December 18th.  We are both excited.

My older son Jimmy, even a bigger fan, will not be in attendance.  He is moderately to severely autistic. A live rock concert, with the lights and the screaming and decibels of the music is too much for him to process.  But I want you to know how he loves you.  He can't express it through words, but does so every day in all sorts of ways.

The Killers' Live From Royal Albert Hall is the only CD in my car now.  It's the only one we listen to.  Jimmy insists that it be on whenever he is in the car.  To school, on the way to Charlottesville to his doctors, to the mall... it has to be The Killers.  He googles you, watches your videos on YouTube, and the DVR'ed concert from HDNet.  He recently had surgery and was in casts for almost a month.  It took him more than a week to stand after surgery.  When he caught you on Yo Gabba Gabba, he was hysterical trying to do his happy dance in his casts.  

Music has always been the biggest, best part of my life.  It pained me when I thought that he would never be able to appreciate something that has brought me so much joy in life.  I realized that he liked music when he bounced to Missy Elliott, hummed Depeche Mode (after years of listening to it in the car), and started searching Deadmau5 on the computer.  But nothing compares to the devotion that he is showing towards you guys.  Moreover, as I watch him develop interests and passions, I see more of who Jimmy is, things that he can't say with words, that he is not a disabled person but a person with a disability who's interests are so much like everyone else's.  

You make him smile.  As I have watched him recover from this surgery, I appreciate it more than you can imagine.  It bothers me that he can't join us for the show.  I'd love for him to be able to come to a meet and greet, sound check (do bands still do sound checks?), or whatever because the show is more than he could handle.  I don't know if that could happen, or if you even will read this, but I can't hurt to try.  I'm feeling badly that Jacob is getting this experience of getting to see you,  but not Jimmy.

If nothing else from comes from this, I want you to know while we all love you here.  

And to Brandon, Dave, Mark, and Ronnie - thank you for bringing so much joy to my amazing, wonderful, incredibly special kid.  You mean more to all of us than you will ever know.

Really American Airlines? Really?

Bede Vanderhorst's parents, call me.  I have a number for the ADA person at the U.S. Department of Justice that I would like to pass along.  They will happily file a claim on your behalf.

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%."