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.