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%."

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. 

When your child's autistic, you want anyone but a Republican in office (actually, there are lots of Democrats who suck for our kids too)

Kudos the 1%, so eloquently represented by Jenna Jameson, who reminded the world what was truly important:

'When You're Rich, You Want A Republican In Office'

Thanks for that, Jenna.  I know he appreciates your supports, as you a job creator for many, how do you say, fluffers out there.  Important work, I know.  Tax breaks for job creation in the porn industry will results in further cuts to the social safety net, including Medicaid, which sustains people with severe disabilities.  That is a cornerstone of his campaign (throwing people like my son under the bus), as well as belief of some of his supporters (who have approached me saying that my son is a tax burden, care of people like him isn't provided in the Constitution, and I should have selected him out of the gene pool through prenatal testing.)  I won't say that Democrats are universally better because they aren't - no one is supportive of our community until they have lived the experience.  

Completely out of the blue, my mother (who is more conservative every time we talk) said after a trip with us that both the Obamas and Romneys should be responsible for the care of my son for one week, that the national conversation about supports for children and adults like Jimmy would be very different.  So after the convention, give us a call.  

I would even think about loaning him to Jenna, with supervision, so she could see that there is more to her vote than just her taxes.  The social safety net, education, public safety...  Jenna and her man Tito Ortiz wouldn't make it a day taking care of a kid like mine.

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.  

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.

When Your Life is No Longer Your Own

ESY (in general ed parlance, summer school) starts Monday and not one moment too soon.  Jimmy is suffering from a lack of structure that school provides him, compounded by dealing with two new aides.  Miss E had him on lock so well that even out of school was nearly seemless - she had a routine of activities that, while changing a bit day to day provided him continuity.  I struggle to do the same and still take care of Jacob.  I have been out of school for two weeks and while I have gotten a lot done around the house, my life has been all consuming and draining.  I love spending time with both kiddos, but I am grateful for the routine starting on Monday.

Yet the craziness has been a distraction to my insecurities.  My BFF, who I admit I don't see as often I should, went to the family beach house this week.  She seems to have invited her other friends, her regular bar crew.  She had no reason to invite me - she did once years ago all of us, but it was impossible with my husband's work and a child that doesn't travel all that well.  And I am not really mad at her, by any means.  She is a friend and she has her own life.  She is in a completely different place than I am.  Sometimes I just long for that place than the one I am in.  I don't know if it is an impossibility or if I am doing something wrong in balancing my life.  I was supposed to go to Magic Mike with another close friend and I completely spaced it after the chaos of today.  

I love my kids.  I love my life.  Still, I wish this was all less isolating to me.  

Summer fun at Kings Dominion

Happy Fourth!

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.

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.      

A blog everyone should be reading...

I just got home from seeing The Hunger Games (I was one of those anxious legions of fans for the books - the movie didn't disappoint.)  As we were leaving, Jim noticed the young woman who is my son's aide at school, someone who I just think I am so blessed to call a friend.  This young woman has an amazing spirit, intelligence, and beauty.  She is a good ten or fifteen years younger than I am, but with the energy and faith to change the world in the best of ways.  With her was a friend named Trinity... I read her blog.  Everyone should.  She is not a special needs mom, but her words have helped pull me out of the great funk of my life.  It's hard to think of God having a plan when you are dealt a bad hand in life or you have faced a tragedy.  I don't know which I perceived my situation with Jimmy to be, but her grace and faith have taught me that our great struggles and burdens can be incredible blessings.

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

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...

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.

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.