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.

Cox Farms

Our annual trip out...  Jimmy went on the hayride without a fight and went on the biggest of the slides.  A great trip...

DC's Shakes, Rattles, and Rolls

Mother Nature and I are not on speaking terms.

I was born and for the most part raised in Southern California.  With the exception of a brief sojourn for three years to northwest Indiana, I lived in suburban Los Angeles, the high desert, and San Diego prior to moving to the DC area twenty years ago.  Throughout my youth, earthquakes were a part of life.  Shortly after my first birthday, we experienced a 6.6 quake.  The epicenter was the community where my mom's parents lived - their home and neighborhood sustained heavy damage.  Olive View Medical Center, only open for a month, largely collapsed.  My other grandmother worked there.   The VA Hospital also sustained serious damaged and loss of life.  Several freeway overpasses collapsed.  My mother told me that she had a hard time staying on her feet getting to my crib as I napped as the world shook around me.  I never woke, but I felt the effects for years.

I remember the smaller quakes, the way the earth shook.  I remember the drop drills, they way we practice tornado or fire drills, we would practice dodging debris under our desks.  Occasionally, the room would shake a little and you went under.  Nothing serious in my childhood, but you were always prepared.  You arranged your rooms so nothing could fall on you as you slept.  Every time you went to Grandma Mayes house and you wanted a glass out of the cupboard, you had to undo a latch on the front of the cupboard and a hook on the inside of it.  We laughed at her - it was a great deal of effort for a drink of water.  She never wanted to sweep her entire kitchen out of her floor again.  After losing so much and spending such time and care in rebuilding her home and belongs, she wanted to minimize any future damage.  

I grew up afraid.  Even the three years we lived in Indiana and experience tornadoes for the first time, I always appreciated the fact that at least you had a few minutes warning to scurry to the basement.  Wildfires, as long as you aren't stubborn and you leave the first you are told, you might lose your property, but you won't lose your life.  Same generally goes for hurricanes.  But there is an unpredictability to earthquakes.  The weatherman can't tell you when the fault lines that run under our planet will come alive and what the end result will be.

It is certainly more expected in California.  It's part of the culture.  The south looks to the north, north to south, each waiting for the other to have "The Big One."  My sister Tracy lives in Washington State.  From her backyard, you see Mt. Rainier, one of the most dangerous volcanoes in the world.  You expect tremors like we had today... there.  Out West.  Not here.  It's part of the reason I choose not to live there.  I despise the uncertainty of it all.  Some people who live in parts of the world where earthquakes are common find themselves able to coexist with them.  I never was.

They scare the part of me that remembers hiding under desks, the part that was waiting for "The Big One."  Remembers what the destruction of a 6.6 looks like and how long it takes to rebuild.  I am really gratefully that the damage was so minimal for the area today.  I hope whatever fault line woke up this afternoon to rumbles gently goes back to sleep for another thousand years.  And I am thrilled that my own children are marvelling at today with more wonder and curiosity than fear.

As for my Grandma Mayes... 23 years later there was another quake.  Northridge, a community I had called home for several years, was the epicenter for a strong 6.7.  Northridge and Sylmar are only a couple of miles apart and Grandma Mayes suffered some damage again.  Lost her dishes with nowhere near the mess.  She put the trash can up to the cupboard and swept everything out.  She was a clever lady.

Unlikely that Mother Nature.  Nope, I am still mad at her.

Science Article: One Problem, Many Paths

Must dust off psych books where they talked about neurons and dendrons and the like.  Interesting ideas, like girls might be more resistant to the genetic causes of autism than boys, explaining the disparity in the numbers.

I've been bad...

I have not kept up with this blog as intended.  A few quick lines to bring my eight friends reading up to speed...

• Summer's good.  
• Have done DC, a couple of museums, and one theme park with the boys with one more to come this week, with free tickets that Jacob won for a reading program.
• Jimmy finally got into this therapeutic riding program.  Very necessary structure for him.  He has turned ten (seriously?!), but there is a serious uptick in both the running and his accidents, so the little structure he gets right now helps him focus a bit better as well as becoming more verbal.  He loves the horses.
• I really need to get a ton of pictures off the computer downstairs.  

That is all for this early hour.  More to follow.  Really.  I promise.

So... Natalie Munroe...

I guess I was snoozing in February because I am only hearing now about the blogging teacher who makes fun of her kids online (on work time, no less.)  Aside from questioning her choice of profession, I am most disgusted by her use of a cartoon - she took it down, but here is the gist of it, in a quote from a local Patch...

A piece of clip art that accompanied the post particularly enraged disability advocates and school board members. It depicted a special-needs school bus and read, “I don’t care if you lick windows, take the special bus, or occasionally pee on yourself, you hang in there sunshine, you’re friggin’ special.”

She attempted to defend herself on her own blog, though it is interesting to note that the relatives with disabilities that she trots out to highlight her "sensitivity" on the subject have physical disabilities.  As the mother of one who more apt to pee, along with other behaviors that go along with developmental disabilities, I can tell you that people don't view these disabilities all in the same light.  If she had any sensitivity, she wouldn't have used the cartoon and comment in the first place.  Or she would have issued a true apology to those who would be offended.  I am even more floored that an educated mother of young children (she is the mother of a toddler and newborn, apparently) would have such vileness in her heart.  The health of your children isn't promised.  Jimmy was a healthy, normal newborn - that gift ended before he was a year old.  In an instant, someone like Natalie Munroe could find herself in these shoes through the hand of fate.

I doubt anyone like that thinks that deeply before speaking (or blogging) so harshly.  She might want to do so in the future.

Edit:  So I found a copy of the offending page with comic on a British news site.  It's small.  Yeah, it's offensive, at least to me.  "If You Can't Say Anything Nice..."  Indeed.

Okay, I need to catch up...

It's been a busy couple of days... a few photos off my phone...

What is wrong with this world?

From Daily Press comments' section on a special education article:

Americanborn at 7:47 AM July 1, 2011 Face it, go visit a school of your choice and realize that certain "so-called students" should not even be there in the first place!  Many babies, if they were born in the animal world, would be eaten by their mothers or left to die a quick death.  If doctors would do their job and focus on "QUALITY OF LIFE" society would not be faced with the is dilemna.  It sickens me to see parents demanding that the world bows to the astronomical expense of HELPING THEM RAISE A CHILD that they can't take care of from the "get go".  It sickens me to see parents struggling to make decisions regarding certain children as to who will take care of them when they are gone.  Ask yourself one question before you judge my post....IF GIVEN A CHOICE...WOULD YOU LIKE TO LIVE A DAY LIKE THIS....A WEEK LIKE THIS?????   Me, I wouldn't last an hour!

A Big Week

Hopefully I will get around to get the pictures off my phone by the end of the week.  We have a big one planned, so I want to share the photos.  Okay, maybe the first three days aren't interesting, but on Thursday the boys and I are going to Kings Dominion with tickets from the Autism Society.  On Friday, Jacob and I have a big trip to DC planned with a tour of the Capitol.  The following week, we have White House tickets!  I will try to get the zoo pictures up this week as well.