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.

Where We Are Currently

Back in pull ups.  That's the long and short of it.  We have tremendous regression in toileting and all sorts of behaviors.  Every step forward feels like five steps back now.  Still working hard in school, growing like a weed, but back sliding in stims or the bathroom or the OCD.  It has been a frustrating couple of months.

Robert Wood, Jr Found Alive

I have been walking around in a fog for most of the week, following the story of Robert Wood, Jr., the 8 year old boy with autism in Hanover, about 90 minutes south of where I live.  As the days drug on the end of the week, my hope faded for his safe recovery.  I had read that the search dogs kept losing the scent at the river's edge.  If you follow news about children with autism who wander from home, you will notice a good number drown.  Given everything that I heard, the ending that came today was more than an a miracle, if such a thing is possible.  I can't wrap my brain around the fact that child is alive after six days.

I don't know his mother got through it.  Jimmy has wandered about a half a dozen times now.  Never directly from me.  Last Thanksgiving, he was with my mother in Macy's and I was in another store with Jacob and he slipped out of the adaptive stroller and wandered away.  We had no idea where he had gone. There were four exits out of Macy's.  Three went out into the parking lot, one into the mall.  The whole ordeal was a half an hour.  Jacob had run off once at Fair Oaks and I was scared, but he knew his name and I knew he hadn't been taken - he had gotten cheesed off and sprinted.  Someone grabbed him and brought him back to the information desk where he got screamed at.  He stood a chance on his own, even at his young age.

Jimmy is a different kettle of fish.  No sense of danger, no ability to communicate, and I don't have any real idea how he would react if a predatory person approached him.  I tried to keep calm to deal with Macy's employees, 911, the police - if I lost it, I would have done Jimmy no good.  But my body had such a physical reaction to the stress, it was insane.  My pulse raced for a half an hour.  I felt physically ill, shaky.  (I honestly don't know how Robert Wood's mom kept it together for a week.)  I had no idea how long it was beginning to end at the time, but every muscle in my body was tense.  I kept my mind working, but I was absolutely sure that I would never see my son again.  I could imagine that he could make his way safely back to me.  The only time that he did anything close to wandering was a time he refused to go into Red Lobster, instead trying to sprint on to Sudley Road.  I straddled him until two female employees of the fast food place next door came to help.  Eventually my husband came as well.  But if I had moved, my kid was intent on running into the street.  I still have no idea why.  When he ran at the mall, I was sure the same thing would happen again.

When the Macy's employee drug him back from the food court, I let out a sound that I still don't think was at all human.  It's been a year and the anxiety of that day hasn't left me yet.  He has bolted in our own neighborhood as well.  You still have the same fear for his safety with cars, but a much better idea where he is going and a lot of people who know who he is and that he should never be anywhere alone.

After Thanksgiving, I faxed over an application to Project Lifesaver at the Sheriff's Office.  In December, Jimmy took Officer Qusenberry on a foot chase, so he took a second one.  I even checked to confirmed receipt.  I was told that I was waitlisted.  During this sheriff's race, I asked about the Project Lifesaver program of one of the candidates and got a whole debate started about it.  Then I asked Sheriff Hill himself at a candidate forum the other night.  I heard from someone that they lost my application and someone else that they never received, but the upshot is they just got some additional grants and that Jimmy is about to receive his unit.  Next week!  The peace of mind is huge.  If he wanders away again, God forbid, it will reduce the search time.  Timing is everything, I suppose.

I imagine Robert will be getting a Project Lifesaver GPS unit shortly as well.  That child has angels with him.  May they continue to keep him well and safe.  I am astounded and grateful at the fact that this beautiful boy is still alive!!!

Article: Autistic children have distinct facial features, study suggests

Now I am going to be studying his face again and again to see if I see it.  I can understand what they are saying though.  I met one of Jimmy's classmates recently and there was something in his face that echoed his.  I couldn't articulate it then.  It's not that they looked alike to the point they would be close relation.  As a matter of fact, I think his parentage is more exotic than my uber-European lineage.  But there was something about the eyes and the chins that I thought that this boy and Jimmy could pass for cousins.  Of course, this study doesn't really explain why these possible similarities exist.  But anything to get closer to a reason...

A thought

Jumping Around at the Jubilee and Clifton Day...

Part two of my fall photos...

Jacob flippingout...

I was very nervous when Jimmy insisted on doing the jump.  Even though he was in harness, I still worried, like Houdini would unhook himself in mid air.  He just jumped up and down and loved it.   

Jacob again...

One the way to Clifton Day...

Climbing the monkey tree...

Fall Photos - Manassas Park Fire and Rescue Open House and one from the Fall Jubilee

We love fall.  October is one of those months when we have every weekend booked.  Probably the most anticipated event is the Fire and Rescue Open House, followed by the Fall Jubilee.  We truly have the most fantastic fire department here in Manassas Park.  

What's up with us...

Jimmy - 4th grade and doing fairly well.  Except for the running and peeing everywhere but the toilet.  He has no aim.  Or he chooses not to use it.  He is a little more verbal and a lot bigger - medication changes already and another to come.

Jacob - 2nd grade, looped in with the same teacher as last year.  We love her, so it is a huge thrill.  A third of his class is with him from last year, along with six former kindergarten classmates and one friend from Pre-K.  It was very hard to keep the birthday party guest list sane this year.

Me - Sore from walking daily, really tired from the beginning of the year, knowing that it will be 2012 before I can catch up on my sleep.  But work is good, the boys have transitioned back to the year well, and life is pretty good.

That's the update.  I have some photos from the past several weeks.  I just need to get them off the camera.

Nothing but good news these days...

Whether you are on the bus...

Or in school...

The world sucks sometimes.

Miller Touts His 100% Small Business Voting Record on the Backs of Autistic Kids

I always start anything about Jackson Miller by saying that even though I don't agree with him, he is one of the more personable and accessible people in the General Assembly.  When kids in his district make Honor Roll, they get a letter from him.  Jimmy did too.  At one point, he supported mandated health insurance for autistic children.  I assume it must have been party or donation or something, because he voted against the insurance mandate last year.  He now touts his support of small business instead of families of autism, which is sad, because he knows several of us.  Mercifully the bill passed... even though it didn't cover Jimmy, it is something for children of the ages between 2-6.

I am not in his district anymore, which is sort of mixed blessing.  He is competent.  He is direct for the most part.  When he is being political, he will tell you why he is.  That's a whole lot better than many politicians.  But I wish Jackson's heart could be as good in Richmond as I know it is up here in Manassas.  That's my biggest gripe about him.  Maybe someday he will be part of expanding the coverage for children with autism.  Maybe someday he will see Jimmy again and be moved to help him.

ADHD Symptoms Worsen Quality of Life for Those with Autism

A new study...

Children with ASD have lower adaptive functioning – the ability to get along in daily situations – than typically developing children. Not only does the presence of ADHD symptoms compromise their adaptive abilities, quality of life is further reduced.

Read more: http://www.autismsupportnetwork.com/news/adhd-symptoms-worsen-quality-life-those-autism-93088394#ixzz1YvMKOWqQ

Welcome to puberty...

Not that we are starting shaving or anything, but we just got back from UVA.  All of Jimmy's dosages are being changed as they are ineffective at present because he is hitting a prepuberty growth spurt and hormone change.  I have dreaded this day... autism isn't cute anymore as Jimmy grows into a young man, things get murkier as the waters change again, and you don't know what is going to happen next.

Enjoy the ride.

Autistic and Seeking a Place in an Adult World

A great article.  I long to know what Jimmy's future hold... that is, when I am not living in complete fear of it.