A few pictures from Mother's Day at the zoo...

Jimmy and Grandma...



Giant Panda!!!



Jacob in the elephant house...



Jimmy loved checking out the elephants!



Mommy and her boys!

I think Jimmy bruised my rib...

He gave me this powerful upkick when I was giving him his antibiotic. It takes two grown and strong adult to force medicine down a fifty pound child. It's nuts. He will be back at school tomorrow. I just need to get to June 19th without anyone getting sick. I am thinking that might be too much to hope for.

You can never win...

So I was an hour into my day, sitting in a meeting at another school, when I was pulled out by a secretary.  Jimmy's school was trying to reach me - he got a stomach bug and had thrown up.  After today, I am now down to slightly less than a day of sick leave with about 30 school days to go.  I pretty much got killed covering DH's surgeries this year (can I say again how complete.  It's annoying.  I ran into Jimmy's principal when I picked him up - she said as a working mom, you often have to be two places at once and you never feel like you are at the right one when you choose.  Family comes first, but I do think she is right on this.  You feel by taking care of one, you are neglecting the other.  It is extremely difficult.  

He is doing okay right now.  Teletubbies is on.  He's happy.  I am doing what I can around the house and keeping the e-mail fires burning. 

Single parenting for the weekend...

A few months ago, DH's father called and started apologizing profusely. He book a fishing charter for his friends and wanted his son to go too. On Mother's Day. Turns out it is a crack of dawn affair, so he will be gone Saturday too. It's not like I didn't decide to make the best of it - my mom and I are taking the boys to the zoo on Sunday. Though both boys have been to the zoo, I haven't been with them yet. I am thrilled for the opportunity, especially with the spiffy new stroller. Saturday has sort of taken me by surprise. If anyone wants to entertain me on Saturday, whether its an invite over or riding shotgun in my minivan and going to the mall, call me. I'm free...

On the autism side of life, Risperdal is working very well. It has curbed the aggressive behavior like the hair pulling. I think he is become more verbal as well. Yesterday, when his therapist came over, he greeted her with a "Hi Miss Rachel." Then he turned to me and said "Hi Miss Mommy" and followed up with a nice "I love you." These are the things that make life worth living.

Iron Man Rocks

If you go see it, do yourself a favor and stay through the closing credits.

A Weird Celebrity Sighting

DH was coming home through Union Station last night and did a double take on a woman.  It was Kim Cattrall.  He didn't stop for a picture because he wanted to make his train (I would have forgiven him missing it under the circumstances), but he waved to her and she gave him a friendly wave back.  He's been a fan of hers since "Big Trouble in Little China," so it was cool that he saw her.

Lost

I have sort of been wallowing in my own private hell of late.  It's not something I have the liberty to blog about, yet it is sort of all consuming.  I guess in response I started to feel like I didn't have anything to say or write about.  A few hours ago, the phone rang.  The caller ID came up as the sister of my best friend from high school.  Now, why would she be calling me?  We exchange cards around the holidays and I talk her sister, my friend Chris, a few times a year.  I hadn't heard from her in awhile, so when her sister's name popped up, my heart filled with dread.  If something happened to Chris, I don't know that I would have been able to cope.

Fortunately, Chris' voice was at the other end.  I was relieved, thrilled even.  I had driven around after work, running errands, in sort of a funk.  I felt lonely.  I am not discussing the things that are bothering me with my friends, I am not airing them out here.  When I am not focused on the task at hand, whether its parenting or working, I am sort of lost in this fog. I want to reach out, but in many respects, I am alone in what I am going through.  For a variety of reasons, I have to be.  But I have never felt so isolated.  When I heard her voice, I felt my shoulders slump.  This woman has been my friend for 22 years.  I can talk to her.

Sadly, she wasn't calling with randomly.  It was news, and very sad news... a friend of ours from high school had passed away last night.  She is a year or so older than me, so she was 39 or 40.  She died of cirrhosis of the liver.  She leaves behind a son, friends and family, and a lifetime of sadness that she tried for years to release.  I guess we all have problems.  It sounds like those around her in the end didn't do much to save her.  Maybe we can't be saved from our own self-destruction, but I guess you would hope for more.  At least Chris was hoping for that.  She had the opportunity to say goodbye a day or so ago and wasn't happy at the state of things.  But she at least got to say goodbye.  I envy her in a way.  Usually, my friendships end as I move away or move on or get busy.  This woman was one of the two or three people in my life that I actually had a falling out with.  It was sort of weird, but even though we had this one mutual friend (probably best friend to each of this), neither of us took steps to mend fences once we broke.  I am just sort of left with this weird ache and a deep sadness at her passing.  She was my friend, someone slept over, who I partied with, shopped with, did all those things you do with your friends when you are young.  40 is too young to die.  It really is, especially when you have a young child.

After we talked about our friend, Chris asked how we were doing.  I told her about what's being going on.  She is the same friend that she has been for 22 years, unfailingly supportive.  As lost as I felt earlier, I am glad she found me at home today and I was able to talk to her.  Even though she is three thousand miles away, Chris reminded me that I am really not alone.

What Kind of World Do You Want?

Click on this Five for Fighting video to raise money for autism and raise your own awareness...

I think every parent of a child of autism is out there trying to change the world for their child.  Maybe if we could quit fighting about what causes it and make the fight how to get insurers to cover autism, we could get more done for Jimmy and kids like him. 

Yeah, yeah, yeah...

I am behind again.  Lots going on.  Jimmy's IEP meeting went well, even as his behavior is falling apart.  We are being supported, though, as he is back up to 12 hours a week for therapy.  We have respite this weekend, beneficial since we lack a regular sitter now.  Really, I am just trying to get to Friday.  I think I will provide you all with a lengthier post then.  

Bounce for Autism

First off, let me apologize for the iPhone photos.  I need to get a camera to start carrying around on a regular basis that better captures kids in motion.  The event was great.  Jimmy's therapist came, along with his teacher.  They had a fantastic time and turnout was pretty good for a Tuesday night.  Let me tell you, climbing to the top of those inflatable slides is some fantastic cardio.  Jimmy had no problem sleeping last night!!!

Why can't every night be a Bounce for Autism?

In related news, I really hope to have Jimmy's birthday there this year.  Invite my friends with kids, invite Jimmy's class, invite some of our adult friends.  It would be a blast!!!

Time for Some Clarification, Friends...

Twice in as many days, I have had friends tell me that they don't want to share their problems with me because, as one said, they seem "small and petty" by comparison. At first, I was sort of irritated, but it made me think. Here's what I came up with...

The last few years have been fairly daunting for me. I turned to blogging about my experience, partially as sort of a group response to the constant questions I got post-diagnosis regarding Jimmy and partially to vent. Of course, venting focuses on the negative, the stress and the troubles. As much as I try to write about the good stuff, if writing is your release, it doesn't work that way. I'm human - I hold on my joy tightly and try to release my pain freely. It helps me survive.

To some degree, this blog is a litany of problems that are very real to people who know me well. Everything from just the day to day stress of parenting a special needs kid (and Lordy, don't get me started about the "normal" one) to the IEPs and the revolving cast of doctors and providers to the more mundane things (albeit heartbreaking) like the death of my cat - it is one thing after another. But not each thing is a problem - it is my life. I have learned to adapt to some degree, to enjoy what I have been given. If took each problem individually and categorized it as such, I wouldn't get out of bed each morning. Who would, with that burden?

And, really, not everything is a burden. As stressful as this is, I realized I chose this. I chose to have children. Would I have chosen to have a child with autism? Certainly not. But you don't get to choose that. Your choice ends when you get pregnant. Yes, you take care of yourself and the child you carry inside of you. But beyond that pregnancy, nothing is promised to you. God gives you a child and you hope and strive for the best. It doesn't always work out that way.

I don't think life would be any less stressful if I had two "normal" kids. The challenges would be different, but they would still exist. I don't know anyone who isn't challenged by their life - jobs, families, relationships, personal demons. It's all very complicated. Everyone has problems. Those problems are just as real and important to you as anything I have got going in my life. If you are my friend, those problems are real and important to me as well. It is the nature of friendship. I don't think anyone is the perfect friend - all relationships require time, energy, and maintenance, all things I struggle with - but I always will welcome the opportunity to try.

Does this make any sense?

In memory of...

My pet and companion of almost 19 years, Buster.  She had deteriorated over the weekend, wasn't eating or walking well.  I had scheduled a visit to the vet tonight.  When I got home from Jimmy's appointment, I couldn't find her initially.  After searching, I found her, eyes sunken in, unable to walk, and breathing heavily.  I got someone to watch him and rushed her to the office.  After a cursory exam, they put her down.  

I got Buster as a kitten when I was still at home with my folks.  She has seen me through a lot in my life.  She is the first pet that I have had from beginning to end - they were either adopted in adulthood or given away in one of our many moves as a kid.  I will miss her greatly.  

Buster

Affectionally known as Miss Kitty, Buster has been part of my family for 18 years.  Sadly, I think we are going to have to take her to the vet this week.  Keep good thoughts for her.  She has been an amazing companion for many years.  I am so sad that this day will likely come this week, but I am really grateful to have had such a wonderful animal in my life.  

A Big Week

We have a big week.  Jimmy goes back to his doctor tomorrow.  With the increase in his aggressive behaviors and mood swings, I am requesting that we try Risperdal.  It's been a long time coming, but I think we are at the point where we have to try this.  I initially dismissed Risperdal years ago with the rationale that he isn't "that" autistic.  He is.  

Jacob starts play therapy this week.  I had planned to begin this a while back because of his transition issues, overall stubbornness, and the realization that having a brother like Jimmy puts a special burden on him that I am at a loss to address.  The recent trauma only increased the need for some behavioral intervention.  He starts Wednesday, though I am only going to be able to schedule these sparsely until they give me an afterschool time slot.  

We all have IEP this week as well as the Bounce for Autism, which I am really looking forward to.  And I am trying to get back into the swing at the gym, so I am going to be hopping this week.

Bounce for Autism

The Manassas Pump It Up is holding a Bounce for Autism to raise funds for the Autism Society of America on April 8th from 5:30-7:30.  We are definitely going - the boys love the place - but I would love some of our friends to go.  Entry is donation based with a suggested donation of $10 per person.  Come out and make this a successful event.  

We are doing okay.  Jimmy is already sacked out, but has left me with a ton of laundry to do for the evening.  His toileting desperately needs to get back on track.  Jacob is doing pretty well at the moment - he is still a wild man, yelling excitedly at Power Rangers currently.

Me... I am still smiling... it looks completely forced and exhausted, but I am smiling.

The Art Show

Jimmy originals...  Jimmy's teacher was nice enough to show us around.    There were several pieces of his in the show this year.  He loved making the alligator the most.  My favorite is the neon.

He's lost it..

As of Tuesday. His therapist had him wiggle till it dropped. Tonight's the art show, so I will get some quick shots with my iPhone and update shortly...

Jimmy's first loose tooth...

He's asleep and I finally got to check in on it - I discovered it a few days ago. It should be gone within the week. I can't believe we have arrived here! I am just hoping it makes it home and he doesn't swallow it or something.

As for last week's problem - many of my readers are my closest friends and I apologize that I have shared the story with some of you. As I get things sorted out, I will give this a lengthy post (albeit somewhat vague) in the future. The post will also make clear my reason's for keeping it private at this time. Now that we are all physically well and have an important story to tell when we are ready. For now, please keep good thoughts for all of us.

Enough the mystery for one night. Time to get ready for the first day back from Spring Break. I guess that leaves roughly ten weeks left to the school year, give or take. But who's counting...

Still here...

There has been a lot going on this week, some things I can't readily discuss. We are all well though and life is returning to normal.

We are going to an Easter Egg Hunt this morning and then my mom is coming to watch the boys this afternoon. I have to go pick up the living room right now in advance of her arrival. It should be clean for five minutes.

I apologize for the lack of posts...

Spring Break isn't turning out to be the productive break I envisioned. I am not going to say much more than I hope to have things somewhat back on track soon.

Woo hoo!!!

It's spring break!!!!!!

Photos and news from this glorious week to follow. (Yes, it's supposed to rain a bunch, but I don't care!)

That is all...

Spring Break - For who?

We are coming up to Spring Break. I am happy to get out of the grind of work for a few days, but I have a done of work to do. I am leaving the boys in daycare so I can get their room clean and actually split them into their own bedrooms. Jimmy is going to get his own digs. I have to 86 my office first, so I get to do a ton of work. I would love to squeeze in lunch with friends, but everyone is either going out of town or too far away to have lunch with during the work week.

The one big thing we have squeezed in next week is the much put off meeting with the Community Services Board. It is completely asinine that they are dragging us to this to get a small respite check when the CSB meets with us every ninety days to determine his eligibility for FAPT (which pays for half his therapies.) His level of function is completely documented through these meetings, yet I must produce my child for yet another evaluation. How many differ ways must I prove he is autistic?

Unfortunately, the CSB respite is going to be it for a while. The person contracted to do Jimmy's psych eval (for the Medicaid paperwork for respite) went on bed rest immediately after our first meeting. It explains why she hasn't called to finish the eval. I guess I get to wait until she pops now. Obviously not her fault, but it is disappointing as this will add months to the process of getting this paperwork completed and Jimmy waitlisted for the waivers. The frustration in navigating this whole autism thing is unending.

I am going to bed. Remarkably, I don't dream about autism. In my dreams, Jimmy talks. His voice is little and small, but it is clear and present. More often than not, I dream about the world before autism, not the world without autism. Mercifully, it's my happy place where I look good in a swimsuit and lie about on the beach without burning.

Sweet dreams, y'all.

I know I am behind...

I am running around, trying to get dressed, but I felt like I had to stop for a few minutes to let everyone know I am alive.

Jimmy has been sick since Friday. I thought it was the flu. He seemed better Monday, so I sent him to school. His fever was back on Monday night, so I took Tuesday off and took him to the doctor. Another ear infection, back on antibiotics. He still has a cough, but he is getting back to being Jimmy. While I was there, I got a referral for a pediatric neurologist. And not at Children's either - INOVA has a growing pediatric speciality, so I am going to give them a whirl. I scheduled the appointment far enough out so I don't have to miss anymore work - two days after I get off contract for the year. I will spend the summer doing the neurological workup I have wanted to do for so long.

SEAC met last night to see how bad the budget will be for special education. Relatively speaking, the cuts won't be so bad. I guess that is because of the legal requirements regarding special ed. Still, the growing needs of this population can't be ignored or diminished in bad budget years. It sounds like the bigger problem for us is the 5% spending cuts on the state level. That will hit special education and my son harder. I hope Governor Kaine and our elected reps can find a way to avoid doing it, especially to struggling jurisdictions.

And for those keeping track, I am still losing weight - I used my skip weigh in pass last week, so I am hoping for good news on Saturday. But I have been spending an increasing amount of time at the gym!!! Fortunately, the boys don't mind going.

Autism and Vaccines

You know, I will go into a longer post over the weekend, but I have such a problem with the whole vaccine movement. It's not that they might not be right, but they make it extremely difficult if you have other ideas about your child's onset. Do you know that I feel I can't go to the local support group meetings. The group leader wrote a post about the vaccine case in Atlanta, exhulting in the acknowledgment of the role of vaccines and declaring a start to the autism wars. What, does that mean I am on the other side of the battle? Is she at war with the medical establishment and big pharma or just anyone that doesn't believe that vaccines cause antibiotics?

I believe that the overprescription of antibiotics contributed Jimmy's autism. From this point, I am walking alone. The big autism groups don't give a shit about me unless I believe in vaccine boogeyman.

Pink

I am getting T a whole lot of pink. A little girl for me to play with, courtesy of BFF. I will have to start getting out to the boonies a whole lot more!!!

A cute photo...

Wish it had been with a slightly better camera... that's how they slept last night.

My Umbrella obsession continues...

Covered by Carrie Underwood and Keith Urban....

Goodbye Neighbors

The neighbors who bought my BFF's house moved out over the weekend. Their house is listed as a short sale. I kind of figured the two in between us would go out, just because they bought high in the hey day of the ARM loans. I didn't figure that these particular neighbors would. It is going to make it that much harder to sell to move to the other side of town. The upside is that parking will dramatically improve around here. Okay, the spots are still numbered, so it really isn't much of an upside. I really liked them (the husband was a big MMA fan, so we had been social with him a bit), so I was sad to see them leave.

Jimmy had FAPT today. We cut back on the consult, but kept in home the same. He has mastered his sitting for 45 seconds goal, so we are going to expand on that and some of his language as well. Progress is incremental in our world. At least we are making it. And we have a med check on him this week, his first, so I feel like we are slowly moving in the right direction.

Bed now. More later.

Still here...

Things have been crazy on so many levels... I will post tonight, after FAPT.

A little annoying...

My links to the articles on Jimmy don't work anymore. The Manassas Journal-Messenger re-did their website and now I can't find our articles anywhere online. Well, I have a cached version of the first one, but can't get anything for Walmart one.

We've recovered...

The blog got away from me for a few days, but I am back. The flu has left the building. I am even returning to the gym tonight after I pick up the boys. I had to skip weigh in on Saturday, so I am wondering how that's going.

Jimmy's doing okay... I am pressing for him to be retained in first grade this year. He may make benchmarks in reading and math, but they aren't really able present other content in a meaningful way - at least, that's my thinking. But to have another year to work on the ABELLS (I hope I am spelling that right) and just another year to mature would be great. If you look at him, he doesn't seem six. He's tall and skinny, but he just is so young. It think if he were "normal," I would have the same concerns. Regular first graders seem so much bigger and mature by comparison.

Can I get my $25 back now?

A random article on this year's flu.  After going to the trouble of getting a flu shot, I am a bit peeved that I got an uncovered strain.  

No snow...

...but I got my day off anyway. Ice>snow, I suppose. I am home sick with my flu ridden four year old and my energetic autistic six year old. I don't think I will get to do much in terms of taking care of myself.

Never have I hoped so completely for a snow day...

Jimmy had four accidents today.  Jacob and I have both been diagnosed with the flu.  I am going to see how things are in the morning, but I am hoping a snow day saves me a sick day.  

Rihanna can do no wrong...

Rihanna and The Klaxons - Umbrella - BRIT Awards 2008
Uploaded by s_natisha

At least when it comes to this song... she performed with the Klaxons. Amazing...

Jacob has perked up...

But we are still hitting the urgent care after my meeting this afternoon.  I am hope, hope, hoping for a snow day tomorrow so I can rest.  As much as I can rest with a house full of kids.  

He Slept Well Last Night...

But now Jimmy is the only one healthy. DH went to the urgent care - he has the double whammy of the flu and a cold. Jacob is now sick as well. I feel warm and achy (I had my damn flu shot, too - useless!) And I have a big meeting after school tomorrow. Ugh!

DH has already called out to his job for tomorrow - his third day there. I am going to go to work and will likely take Jacob and myself to the doctor after my meeting. Glorious motherhood.

Up early again...

Though not as early as before. I heard the sounds of running water - it was only the sink, but it is always disconcerting. I always wonder what Jimmy's been up to. At least I got some sleep - though I would be happy with another hour or two. There haven't been enough weather delays this winter.

To Celebrate the New Job...

I bought an adaptive stroller.  Ouch.  But it means I can haul Jimmy to the zoo over Spring Break.  Maybe even a gallery on the Mall or something.

Cookie Monster on NPR

Jimmy's favorite - it's hysterical, especially the end...

Happy Sunday

Well, the husband officially has a job again. He starts on Tuesday. I think he may have another job offer coming as well. If it arrives, we will deal with it - for the time being, the mortgage is definitely not to be sweated. The benefits aren't great, but the commute is an improvement for him. I am pleased that he is getting back to work.

Jacob just left with his dad to go to the in-law's house overnight. I am sort of sad that my baby is leaving, even for 24 hours. I like a break every so often too, but a piece of me is missing when I am not with my kids. I get Jimmy to keep me company. He is actually in therapy right now, but as soon as that is over, I am taking him to run errands. I am tentatively planning on going to church tonight, but I am going to see how much I get done. We are working on getting Jimmy set up in his own room right now, but it involves cleaning out a room (my office) that has been nothing more than a dumping ground for the longest time. I think being down to one will afford me the opportunity to get a lot done.

Jimmy seems to be okay on the Lexapro. I am getting it down him effectively, which is always the biggest challenge. I think it will be a few weeks before we see any impact, so I have the teacher and therapists on alert for data collection and just any anecdotal stuff regarding his behaviors, especially the anxiety and OCD stuff. He had an accident free Friday at school and aftercare, which was great. Time will tell if there is a correlation between the two.

Solo this weekend...

Husband's unemployment may be ending shortly (I'll post details as soon as I have them set) and Jacob's daycare is closed on Monday, so they are heading out to my in-laws new house for Sunday and Monday. Jimmy and I are on our own. Probably means I will drag him around the mall Sunday afternoon. Anytime I can get to one kid, it is easier for me. Even if that one has issues with public toilets.

Hopefully the sleep thing is resolved by then, otherwise I will begin to dread Sunday night.

An Accident Free Day

No potty errors at school or aftercare!!!! Woot woot!!! He waited until he got home. Progress has to be measured in small increments sometimes.

Day one of Lexapro

Jimmy went to bed at 9 pm and got up for the day at 1 am.  Obviously some kinks to work out!!

For those who were wondering about Tuesday

"...he believes that we should increase funding for the Individuals with Disabilities Education Act to truly ensure that no child is left behind."

I kept going back to that single statement, which lead me to make up my mind in the voting the booth that I would indeed support Barack Obama. This comes up in the Special Ed Advisory Committee meetings all the time - the fact that IDEA is an unfunded mandate, meaning we get very little from it. Having IDEA fully funded would make a huge difference to kids with autism all over the country, instead having it passed through to the local school districts as an unfunded mandate. I am all for research and better treatments, but fully funding IDEA now is a fantastic goal and one I believe he could and would achieve with the help of Congress.

Having said that, I hope Senator John McCain eventually makes an equally strong policy statement on autism as part of his platform. This is not a one party issue - at least it shouldn't be.

Better Living Through Chemistry

I start Jimmy on Lexapro tomorrow to combat the OCD and anxiety issues.  The thought is maybe if we address these issues, he will pace around less.  Failing that, we will treat the ADHD separately, but only after we look at the anxiety.  It is becoming increasingly debilitating for him.  I like the doctor he went to today - she was accommodating and supportive.  She even commented that she had never seen a child with so many services, which is something I will take credit for because I have busted my butt to get the help we have (which, according to the recommendations of the developmental pediatrician, still isn't adequate for his need.)    

Tomorrow I go back to the Community Services Board so they can determine that he is indeed still autistic.  Like its changed.  We are getting services from the CSB through FAPT already, so I am really unimpressed that some underling is making us jump through hoops - I am cooking up a whole post on this debacle, oh just you wait.  The phone call to schedule this appointment last week put me in the foulest of moods.  

Before I go, I feel the overwhelming need to apologize to all the people I am blowing off right now while dealing with Jimmy.  There are several - it is sort of all consuming at the moment and even if I am not directly dealing with, I am too emotionally exhausted to deal with much else.  I have good friends going through a lot right now and it makes me sad that I can't seem to be there for them the way I would like.  

So we didn't go...

Jimmy's toileting is becoming more unpredictable.  He spent 30 minutes last night doing laps around the house.  He is more OCD than ever.  Loud places have made him increasingly anxious of late.  He cries a great more than normal.  His vocal stims are out of this world.  For all these reasons, I wound up not going to the Hillary Clinton Town Hall at Metz.  Jimmy comes first.  Yesterday I decided my poster child just needed to be my child.  I doubt the world missed us.  ;)  

He goes to be evaluated for meds tomorrow.   I am hoping this helps to address some of the more problematic behaviors of late.  I am beyond frazzled at this point.  I just want to crawl into bed and hide under the covers.

Still on for tomorrow...

I hope Jimmy is up for this. Heck, I hope I am.

Reality Blah covers the campaign...

Hillary Clinton is coming to Manassas on Sunday. Jimmy will go with me. Bloggers qualify for press credentials... who knew?

My sister hates me right now...

Your weekly update...

I have been busy the past few days.  I took off last night to go to this Primary Matters events, where only the Democratic candidate reps actually showed - Huckabee's people were supposed to, but never did.  Hey, I was at least able to score the bottle of water marked for Huckabee.  I heard people from Obama and Clinton's campaign.  Clinton's guy (a volunteer who had a fellowship/internship in the last Clinton administration) was much more engaging, but I am not completely sold on her platform or policy positions.  Obama's guy was such a pro that he seemed completely disconnected from the voters.  I liked a lot of the policy points he made and left thinking I would vote for Obama, but found his professionalism and lack of engagement a little off-putting.  I really don't know what I am doing on Tuesday.  I still wish John McCain had an articulated autism platform.  Everyone should.

I lined up an appointment for Jimmy on Tuesday to look at medicating for the ADD/ADHD, OCD, and anxiety stuff that we are working through right now.  I am having such a hard time with him right now, that I am kind of shutting down.  I am starting to shut people out a bit - I know I am, but I can't help it.  I have all this weird interpersonal stuff going in my life in every setting.  Jimmy spends half his time running in circles.  Jacob is so lacking for attention that he just is a hellion regardless of the setting.  He wants our attention and can only feel it when he is acting up and out.  I am feeling so overwhelmed by everything that I feel like I would break if one more thing touched my shoulders.  It's the weight of the world, you know...

Maybe Jimmy's new doctor could write a prescription for me... some valium perhaps.  

Putting that bright side... I have lost seven pounds this month.  Something has to go right, in spite of everything...

Mac Mini Disaster

As I reported earlier, Jimmy has become much more proficient in his computer ability with all of his surfing and such.  The one thing Jimmy has not mastered is ejecting disks from the Mac.  We found out the hard way when the husband tried to use the computer to find it jammed.  Jimmy had stuck his new shark DVD on top of his Spiderman DVD.  I got a panicked phone call while I was at Tysons (location of the Apple Store) with Jacob for Jimmy's respite day at McLean.  We were just wandering the mall anyway, but I had to go to the store, schedule an appointment for later in the afternoon, drive back to Manassas to get the computer and drop Jacob off, then return for Jimmy, and then to kill an hour waiting for the appointment, then waiting 30 more minutes in the store as the Genius Bar was running late.  That's a long wait for Jimmy, but he did well - or at least was doing well until I got him back to a car and realized he had an accident during the wait...  He had started to cry while we were waiting, but I assumed it was just the wait.  I felt so awful.  

At any rate, Genius Bar guy couldn't help, so the guy took in the unit so one of their technicians could pop the top off (not as easily done with a Mac as a PC.)  He said it would be two or three days, but we got a phone call last night saying it was ready.  Another drive to Tysons and $85 later, we have our computer back.  I would love to still have that $85, but at least he didn't fry out the drive.

Pictures from the escapade...

Jacob at lunch... the one luxury I afforded myself.  He wasn't horrible, but I have had time better well behaved with me.

Jimmy playing the Star Wars Lego game in the Apple Store.  Yes, I still have to use a stroller from time to time.  A hour and a half wait in the mall.. yeah, I used it.  I need to clean that tray up - it still has stickers from the fall campaigns.

I need a weekend off to recover from my weekend!

Second Part of the Auditory Therapy article...

Kudos to the journalist for a job well done (though Alex Granados is always first in my book - personal bias!!!)

Our local paper does another story on autism

I have been interested in this auditory training for a while now.  Sadly with the husband out of work, I don't have the extra $4000 lying around.  Since there is now someone in Prince William County doing this, maybe if he gets a job soon, this could be a possibility.  I am pleased that they continue to follow this topic so closely.  Now if they could do an article on why HB83 didn't get out of committee and how much it would mean to families of kids with special needs.  

Friday's interview went pretty well.  Hopefully he gets a callback this week.  This is starting to take a toll.  

On the next episode of Reality Blah...  How Jimmy killed our Mac and our afternoon in the Apple Store.

Late Nights

So Jimmy sleep meds aren't working as well as they use. We were woken up by Jimmy at 2 am, who thought that was the perfect time to begin his day. While we took turns trying to sleep, Jimmy stayed up and surfed the web all night for Boohbahs. I am completely serious. I went through the history. He played games, looked at Boohbah images, and a bunch of YouTube Boohbah videos. Nutty stuff. The husband got to make up some sleep (certainly not enough), so I caught a nap when I got home. I am still tired. I think I am going to head to bed now. And, from the looks of it, Jimmy is going down tonight sans medication. He has to be pooped as well.

Tomorrow I met with Jimmy's teacher to check his progress. He had a string of potty accidents last week, so I want to make sure that has been addressed.

We're #3

Well, if you google "autism john mccain," I am the third post that comes up for my earlier post on John McCain and Hillary Clinton's stances on autism as they related to their candidacy. This has resulted in an increase of traffic for my little blog. Nothing dramatic, but encouraging me that I am not alone in consider autism as a campaign issue. If you are dropping by for that little post, please consider checking the rest of my little blog out and setting out to make autism that is something discussed during this election cycle. My experience with HB83 leaves me a little disheartened with the process and my ability to get anything done by myself. Yet, 1 in 150 children has autism in this country. These kids have parents, grandparents, aunts, uncles, teachers, and so on that feel strongly about the need for medical and therapeutic care, the right to education, and any hope these kids have for the future. Jimmy doesn't have a voice, so I raise mine for him and every child like him. If you care about someone living with autism, I beg you to raise yours.

A letter to the editor that explains a little more about what happened to HB83

"Unfortunately, the House Labor and Commerce Committee has decided more study is needed and has forwarded HB 83 to a commission to study the bill and provide recommendations for next year's session. I hope they will realize the error in the current insurance company interpretation of federal education law and recommend passage of the bill. I urge all of our delegates and senators to join Marshall in his efforts to level the playing field for children with disabilities."

So it isn't dead forever, just for this year.  It could easily be studied to death, though.  If you feel passionately, you should call your elected officials and urge them to help out kids like Jimmy.

Jimmy's first post

boohbah

walmart

He typed the words and posted the photo.

Sad News from Richmond

From the Potomac News

"HB 83 Mandated insurance coverage for children.

Del. Jackson H. Miller, R-Manassas is a cosponsor of this bill.

It was killed by the House Commerce and Labor Committee and would have required insurance companies to provide coverage for habilitative services for children."

First, I can't believe the reporter left out that whole "autism" thing.  Habilitative services for children with autism.  

This proves yet again that most legislators in Richmond don't give a crap about kids with autism.  If my past experience hold true, the business lobbyists went in there to speak on the bill, saying it would cost companies too much in premiums.  Poof.  Dead.  

More Presidential Stuff

"As Super Tuesday draws nearer, it seemed to me to be time to look more closely at what candidates have to say about autism. Interestingly, the three top Democrats all have honest-to-goodness autism "platforms" - while the Republicans seem to have sidestepped the issue. This is not to suggest that Dems care more about people with disabilities, but the issue does seem to be more prominent on the Democratic radar."

The American Association of People with Disabilities sent a survey to all the candidate on a variety of issues. No Republicans responded to the survey, though John McCain participated in one of their candidate forums on disabilities.  

With the number of families struggling with autism and just the number of people with disabilities in general in this country, I can't imagine not taking the time to answer a survey.

Job Search Update

Still unemployed.  The search goes very slowly.  I am sort of disgusted that this economic stimulus package won't extend unemployment benefits.  We will likely need them.  He applied for two jobs with the local newspaper - not the only jobs he has applied for, but the ones I am most optimistic about.  I am hoping and praying that one of those works out.  The jobs close at the end of the month.  The husband really is trying - he applies for multiple jobs a day and has been on a few interviews.  He just isn't coming up with anything.

I got Jimmy's therapy schedule - early for the first time.  I am really happy!  I got to put it in my planner so I can plan the rest of my month.  It relieves a huge burden just to be able to do that.  He is having a rough couple of days, too.  He isn't feeling well and had a bathroom accident at school today.  Dad had to take him a change of clothes before he went to his first physical therapy appointment.  

Wow, life really has been a drag this year.  And it's only January.  It's got to get better.  

'Underdiagnosed' Girls With Autism Struggle to Fit In

"It is exactly this desire to please that Myles believes may explain how a girl with autism could fool the experts, so to speak.

"We overtly teach social skills to girls," Myles said. "They are told not to get angry, they are told to be nice, they are told to share -- all of those behaviors."

Myles believes these social skills are not as ingrained in boys as they are in girls. "It's more appropriate, if you will, for a boy to have a tantrum and major meltdown than a girl," Myles said. "

This article is very interesting... I never thought of autism this way for girls, that we are socialized to overcompensate. The last paragraph goes to the stigma that still exists for all parents of children with autism, especially those who are among the highest functioning.

""Nightline" recently followed Kaeda around school and met a faculty member who was skeptical, suggesting that the children's challenges had to do with the way they were parented. Myles said that kind of reaction is "heartbreaking, and indicates a gross misunderstanding of autism spectrum disorders. And I'm not blaming that indiviudual staff member, but he or she doesn't understand.""


Brenda Myles is much more understanding than I am. Jimmy seems to be much lower functioning than these children, but for years autism has been equated to and dismissed as bad parenting. If anyone suggested that to me about my child or any other child with autism, like my son's classmates, they would catch hell from me. I am stunned that an educator working in this day and age would say that.

My birthday weekend...

Went well, except for tweaking my lower back.  I made it out to see Cloverfield today, which was very good - well hyped on the Internet, left more questions than it answered.  I can't wait to see what sort of sequel they come up with for it.  

Watched the UFC last night - Jorge Rivera had an Autism Speaks logo on his shirt.  I was thrilled to see a fighter raise awareness for autism.  My husband sent an e-mail to ask about the shirt and to ask about doing an interview for his MMA website, so we are hoping to hear back from him.  It probably is a silly thing to get excited about, but it made my night.  Oh, and he won his fight - made his night as well, I guess.  

Sorry I don't have more to say, but my back hurts a lot.  I am going to take a muscle relaxer and contemplate my navel for the remainder of the evening.  

Happy Birthday to Me

I must go get the boy up and get to the mall.  It's my birthday and I am going shopping with my mom.  Jimmy is a little under the weather - he has been very anxious and doesn't seem to be feeling well, so I am leaving him home this trip.  Makes me sad - I really like taking him around the mall.  

Went to Cheesecake Factory last night (note to those interested, CF and Alli - the weight loss med - are not friends) where we didn't wait for a table and got a parking spot easily.  Of course that makes up for Jacob crapping his pants in traffic and Jimmy having a huge meltdown en route to respite at the church.  But we had a nice meal - that counts, right? 

My Continuing Quest

I sent e-mails to the Romney and McCain campaigns tonight.  I hope to hear back from them soon.  I think every candidate should articulate autism as a policy issue this cycle.  One out of 150 children in this country has been diagnosed with autism.  Doesn't that make it one out of 75 parents have a child with autism?  And these people have grandparents and other family members too - many of whom vote as well.

An e-mail from the Edwards campaign...

Dear Rachel-

Thank you for writing John Edwards about autism.  He appreciates that
you took the time to share your thoughts and concerns.  Hearing from
people all over the country about the issues important to them
strengthens our campaign.

Autism is a quiet crisis, affecting an astonishing 1 in 150 children and
four times as many boys as girls.  Nobody knows why diagnoses have risen
tenfold just over the past decade.

We need to find the causes so we can help protect our children.  The
National Institutes of Health have concluded that childhood vaccines are
not the cause, but many families are not convinced.  As president, John
Edwards will double funding for autism research, issue an all-hands-on
deck challenge and follow the results wherever the science takes us.

We also need to take better care of children affected today.  Our plan
for universal health care, guaranteed coverage of autism care in
Medicaid and private insurance, and better investments in special
education and home health workers will assist families to support and
treat children with autism and help children, and adults, reach their
full potential.

We should also invest more in recruiting, training and paying
sufficiently teachers, therapists, psychologists and others working in
the special education field.  It's time to finally get on a path to
fully funding special education.

This is an area John Edwards has been involved with for a long time.  He
started fighting to help families with autism when he first arrived in
the Senate.  One of the very first bills he introduced and help make law
was the Fragile X Breakthrough Research Act, which provided new
resources for a genetic condition that results in autism for thousands
of children.  The Senate passed the bill into law, providing new
resources for research devoted to Fragile X.

Again, thank you for sharing your ideas with the campaign.

Sincerely,
The Edwards Team

The Countdown

My birthday is on Saturday.  No, I am not going to tell you how old I am (a few kids asked me today at work.)  Suffices to say that I am old enough.  I am supposed to go shopping with my mom if the weather holds.  I think I have to take the kids though - I would love to have an afternoon off of them, but I don't think I will get that.  Jimmy's the healthy one at the moment.  Jacob was off school for two days after vomiting all over the doctor's office at my appointment.  In this house, the adults are on antibiotics.  I have a respiratory infection and the man has a sinus infection going on.  It's slowed his job search to a crawl - no live prospects this week.  I really want him to get something going soon.  Beginning of the year, sick, bad economy - it really is a horrible time to be looking for a job.  

Jimmy came in our bedroom doorway (he doesn't like to come into our room - a little OCD thing that makes me crazy) at 6 a.m. and kept saying "Mommy, Mommy, Mommy."  He has rarely called me that in his life.  In the past, he didn't address me in anyway.  He generally doesn't address people by name without a prompt.  Yet, he kept saying it over and over - Mommy.  It was beautiful.  

Great news on HB 83!

From my delegate today:

"I have decided to co-patron HB 83. I look forward to following it through
committee and voting for it on the House floor."

Thank you, Jackson Miller!

I didn't rig this outcome...

I took a personality survey... guess who I am?

You Are Cookie Monster

Misunderstood as a primal monster, you're a true hedonist with a huge sweet tooth. You are usually feeling: Hungry. Cookies are preferred, but you'll eat anything if cookies aren't around. You are famous for: Your slightly crazy eyes and usual way of speaking How you life your life: In the moment. "Me want COOKIE!"

The Sesame Street Personality Quiz

Is Cookie Monster Silly?

Jimmy's question of the day.  He doesn't normally ask questions.  Even his requests are more like demands - "I want," instead of "May I have?"  But as he was putting together a Sesame Street puzzle, he turned to his therapist and asked.  She was stunned.  So was I.  Of course, I had to e-mail "Cookie Monster" from this summer to tell him.  He was pleased as well.

House Bill 83

Well, autism is making another appearance in the General Assembly this year.  This bill is being introduced by Delegate Bob Marshall, requiring insurers to cover autism.  I very much would like to see this bill make it out of committee.  If you are a Virginia voter, contact your delegate today to ask them to co-sponsor this important bill.  I sent an e-mail to Jackson Miller, my delegate to ask him to do the same.  I will keep you posted as to his response.  

Referred to Committee on Commerce and Labor

----------

Be it enacted by the General Assembly of Virginia:

1.  That § 38.2-4319 of the Code of Virginia is amended and reenacted and

that the Code of Virginia is amended by adding a section numbered

38.2-4318.15 as follows:

§38.2-3418.15. Coverage for habilitative services for children.

A. Notwithstanding the provisions of § 38.2-3419, each insurer proposing

to issue individual or group accident or sickness insurance policies

providing hospital, medical and surgical, or major medical coverage on an

expense-incurred basis; corporation providing individual or group accident

or sickness subscription contracts; and health maintenance organization

providing a health care plan for health care services shall provide

coverage under any such policy, contract, or plan delivered, issued for

delivery, or renewed in the Commonwealth on and after July 1, 2008, for

medically necessary habilitative services for persons younger than 19

years.

B. For the purposes of this section:

"Habilitative services" means health and social services directed toward

increasing and maintaining the physical, intellectual, emotional, and

social functioning of developmentally delayed individuals, including

occupational, physical, and speech therapy; assistance, training,

supervision, and monitoring in the areas of self-care, sensory and motor

development, interpersonal skills, communication, and socialization; and

reduction or elimination of maladaptive behavior. "Habilitative services"

does not include services for which coverage is provided or required to be

provided pursuant to § 38.2-3418.5.

"Medically necessary habilitative services" means habilitative services

that are certified by the Department of Mental Health, Mental Retardation

and Substance Abuse Services as designed to help an individual attain or

retain the capability to function age appropriately within the

individual's environment and shall include habilitative services that

enhance functional ability without effecting a cure.

C. An insurer, corporation, or health maintenance organization subject to

this section shall not be required to provide coverage for medically

necessary habilitative services to the extent that such services are

provided through the individual's school; however, this exclusion from

coverage shall not alter or diminish the obligation of an insurer,

corporation, or health maintenance organization to provide coverage for

medically necessary habilitative services that are not provided through

the individual's school.

D. An insurer, corporation, or health maintenance organization subject to

this section shall provide notice annually to its insured and enrollees

about coverage required under this section.

E. The provisions of this section shall not apply to short-term travel,

accident-only, limited or specified disease policies, contracts designed

for issuance to persons eligible for coverage under Title XVIII of the

Social Security Act, know as Medicare, or any other similar coverage under

state or federal governmental plans, or to short-term nonrenewable

policies of not more than six months' duration.

§ 38.2-4319. Statutory construction and relationship to other laws.

A. No provisions of this title except this chapter and, insofar as they

are not inconsistent with this chapter, §§ 38.2-100, 38.2-136, 38.2-200,

38.2-203, 38.2-209 through 38.2-213, 38.2-216, 38.2-218 through 38.2-225,

38.2-229, 38.2-232, 38.2-305, 38.2-316, 38.2-322, 38.2-400, 38.2-402

through 38.2-413, 38.2-500 through 38.2-515, 38.2-600 through 38.2-620,

Chapter 9 (§ 38.2-900 et seq.), §§ 38.2-1016.1 through 38.2-1023,

38.2-1057, Article 2 (§ 38.2-1306.2 et seq.), § 38.2-1306.1, §

38.2-1315.1, Articles 3.1 (§ 38.2-1316.1 et seq.), 4 (§ 38.2-1317 et seq.)

and 5 (§ 38.2-1322 et seq.) of Chapter 13, Articles 1 (§ 38.2-1400 et

seq.) and 2 (§ 38.2-1412 et seq.) of Chapter 14, §§ 38.2-1800 through

38.2-1836, 38.2-3401, 38.2-3405, 38.2-3405.1, 38.2-3407.2 through

38.2-3407.6:1, 38.2-3407.9 through 38.2-3407.16, 38.2-3411.2, 38.2-3411.3,

38.2-3411.4, 38.2-3412.1:01, 38.2-3414.1, 38.2-3418.1 through

38.2-3418.1434.2-3418.15, 38.2-3419.1, 38.2-3430.1 through 38.2-3437,

38.2-3500, subdivision 13 of § 38.2-3503, subdivision 8 of § 38.2-3504, §§

38.2-3514.1, 38.2-3514.2, 38.2-3522.1 through 38.2-3523.4, 38.2-3525,

38.2-3540.1, 38.2-3542, 38.2-3543.2, Article 5 (§ 38.2-3551 et seq.) of

Chapter 35, Chapter 52 (§ 38.2-5200 et seq.), Chapter 55 (§ 38.2-5500 et

seq.), Chapter 58 (§ 38.2-5800 et seq.) and § 38.2-5903 of this title

shall be applicable to any health maintenance organization granted a

license under this chapter. This chapter shall not apply to an insurer or

health services plan licensed and regulated in conformance with the

insurance laws or Chapter 42 (§ 38.2-4200 et seq.) of this title except

with respect to the activities of its health maintenance organization.

B. For plans administered by the Department of Medical Assistance Services

that provide benefits pursuant to Title XIX or Title XXI of the Social

Security Act, as amended, no provisions of this title except this chapter

and, insofar as they are not inconsistent with this chapter, §§ 38.2-100,

38.2-136, 38.2-200, 38.2-203, 38.2-209 through 38.2-213, 38.2-216,

38.2-218 through 38.2-225, 38.2-229, 38.2-232, 38.2-322, 38.2-400,

38.2-402 through 38.2-413, 38.2-500 through 38.2-515, 38.2-600 through

38.2-620, Chapter 9 (§ 38.2-900 et seq.), §§ 38.2-1016.1 through

38.2-1023, 38.2-1057, § 38.2-1306.1, Article 2 (§ 38.2-1306.2 et seq.), §

38.2-1315.1, Articles 3.1 (§ 38.2-1316.1 et seq.), 4 (§ 38.2-1317 et seq.)

and 5 (§ 38.2-1322 et seq.) of Chapter 13, Articles 1 (§ 38.2-1400 et

seq.) and 2 (§ 38.2-1412 et seq.) of Chapter 14, §§ 38.2-3401, 38.2-3405,

38.2-3407.2 through 38.2-3407.5, 38.2-3407.6 and 38.2-3407.6:1,

38.2-3407.9, 38.2-3407.9:01, and 38.2-3407.9:02, subdivisions 1, 2, and 3

of subsection F of § 38.2-3407.10, 38.2-3407.11, 38.2-3407.11:3,

38.2-3407.13, 38.2-3407.13:1, and 38.2-3407.14, 38.2-3411.2, 38.2-3418.1,

38.2-3418.2, 38.2-3419.1, 38.2-3430.1 through 38.2-3437, 38.2-3500,

subdivision 13 of § 38.2-3503, subdivision 8 of § 38.2-3504, §§

38.2-3514.1, 38.2-3514.2, 38.2-3522.1 through 38.2-3523.4, 38.2-3525,

38.2-3540.1, 38.2-3542, 38.2-3543.2, Chapter 52 (§ 38.2-5200 et seq.),

Chapter 55 (§ 38.2-5500 et seq.), Chapter 58 (§ 38.2-5800 et seq.) and §

38.2-5903 shall be applicable to any health maintenance organization

granted a license under this chapter. This chapter shall not apply to an

insurer or health services plan licensed and regulated in conformance with

the insurance laws or Chapter 42 (§ 38.2-4200 et seq.) of this title

except with respect to the activities of its health maintenance

organization.

C. Solicitation of enrollees by a licensed health maintenance organization

or by its representatives shall not be construed to violate any provisions

of law relating to solicitation or advertising by health professionals.

D. A licensed health maintenance organization shall not be deemed to be

engaged in the unlawful practice of medicine. All health care providers

associated with a health maintenance organization shall be subject to all

provisions of law.

E. Notwithstanding the definition of an eligible employee as set forth in

§ 38.2-3431, a health maintenance organization providing health care plans

pursuant to § 38.2-3431 shall not be required to offer coverage to or

accept applications from an employee who does not reside within the health

maintenance organization's service area.

F. For purposes of applying this section, "insurer" when used in a section

cited in subsections A and B of this section shall be construed to mean

and include "health maintenance organizations" unless the section cited

clearly applies to health maintenance organizations without such

construction.

§ 38.2-4319. Statutory construction and relationship to other laws.

A. No provisions of this title except this chapter and, insofar as they

are not inconsistent with this chapter, §§ 38.2-100, 38.2-136, 38.2-200,

38.2-203, 38.2-209 through 38.2-213, 38.2-216, 38.2-218 through 38.2-225,

38.2-229, 38.2-232, 38.2-305, 38.2-316, 38.2-322, 38.2-400, 38.2-402

through 38.2-413, 38.2-500 through 38.2-515, 38.2-600 through 38.2-620,

Chapter 9 (§ 38.2-900 et seq.), §§ 38.2-1016.1 through 38.2-1023,

38.2-1057, Article 2 (§ 38.2-1306.2 et seq.), § 38.2-1306.1, §

38.2-1315.1, Articles 3.1 (§ 38.2-1316.1 et seq.), 4 (§ 38.2-1317 et seq.)

and 5 (§ 38.2-1322 et seq.) of Chapter 13, Articles 1 (§ 38.2-1400 et

seq.) and 2 (§ 38.2-1412 et seq.) of Chapter 14, §§ 38.2-1800 through

38.2-1836, 38.2-3401, 38.2-3405, 38.2-3405.1, 38.2-3407.2 through

38.2-3407.6:1, 38.2-3407.9 through 38.2-3407.16, 38.2-3411.2, 38.2-3411.3,

38.2-3411.4, 38.2-3412.1:01, 38.2-3414.1, 38.2-3418.1 through

38.2-3418.1438.2-3418.15, 38.2-3419.1, 38.2-3430.1 through 38.2-3437,

38.2-3500, subdivision 13 of § 38.2-3503, subdivision 8 of § 38.2-3504, §§

38.2-3514.1, 38.2-3514.2, 38.2-3522.1 through 38.2-3523.4, 38.2-3525,

38.2-3540.1, 38.2-3542, 38.2-3543.2, Article 5 (§ 38.2-3551 et seq.) of

Chapter 35, Chapter 52 (§ 38.2-5200 et seq.), Chapter 55 (§ 38.2-5500 et

seq.), Chapter 58 (§ 38.2-5800 et seq.) and § 38.2-5903 of this title

shall be applicable to any health maintenance organization granted a

license under this chapter. This chapter shall not apply to an insurer or

health services plan licensed and regulated in conformance with the

insurance laws or Chapter 42 (§ 38.2-4200 et seq.) of this title except

with respect to the activities of its health maintenance organization.

B. For plans administered by the Department of Medical Assistance Services

that provide benefits pursuant to Title XIX or Title XXI of the Social

Security Act, as amended, no provisions of this title except this chapter

and, insofar as they are not inconsistent with this chapter, §§ 38.2-100,

38.2-136, 38.2-200, 38.2-203, 38.2-209 through 38.2-213, 38.2-216,

38.2-218 through 38.2-225, 38.2-229, 38.2-232, 38.2-322, 38.2-400,

38.2-402 through 38.2-413, 38.2-500 through 38.2-515, 38.2-600 through

38.2-620, Chapter 9 (§ 38.2-900 et seq.), §§ 38.2-1016.1 through

38.2-1023, 38.2-1057, § 38.2-1306.1, Article 2 (§ 38.2-1306.2 et seq.), §

38.2-1315.1, Articles 3.1 (§ 38.2-1316.1 et seq.), 4 (§ 38.2-1317 et seq.)

and 5 (§ 38.2-1322 et seq.) of Chapter 13, Articles 1 (§ 38.2-1400 et

seq.) and 2 (§ 38.2-1412 et seq.) of Chapter 14, §§ 38.2-3401, 38.2-3405,

38.2-3407.2 through 38.2-3407.5, 38.2-3407.6 and 38.2-3407.6:1,

38.2-3407.9, 38.2-3407.9:01, and 38.2-3407.9:02, subdivisions 1, 2, and 3

of subsection F of § 38.2-3407.10, 38.2-3407.11, 38.2-3407.11:3,

38.2-3407.13, 38.2-3407.13:1, and 38.2-3407.14, 38.2-3411.2, 38.2-3418.1,

38.2-3418.2, 38.2-3419.1, 38.2-3430.1 through 38.2-3437, 38.2-3500,

subdivision 13 of § 38.2-3503, subdivision 8 of § 38.2-3504, §§

38.2-3514.1, 38.2-3514.2, 38.2-3522.1 through 38.2-3523.4, 38.2-3525,

38.2-3540.1, 38.2-3542, 38.2-3543.2, Chapter 52 (§ 38.2-5200 et seq.),

Chapter 55 (§ 38.2-5500 et seq.), Chapter 58 (§ 38.2-5800 et seq.) and §

38.2-5903 shall be applicable to any health maintenance organization

granted a license under this chapter. This chapter shall not apply to an

insurer or health services plan licensed and regulated in conformance with

the insurance laws or Chapter 42 (§ 38.2-4200 et seq.) of this title

except with respect to the activities of its health maintenance

organization.

C. Solicitation of enrollees by a licensed health maintenance organization

or by its representatives shall not be construed to violate any provisions

of law relating to solicitation or advertising by health professionals.

D. A licensed health maintenance organization shall not be deemed to be

engaged in the unlawful practice of medicine. All health care providers

associated with a health maintenance organization shall be subject to all

provisions of law.

E. Notwithstanding the definition of an eligible employee as set forth in

§ 38.2-3431, a health maintenance organization providing health care plans

pursuant to § 38.2-3431 shall not be required to offer coverage to or

accept applications from an employee who does not reside within the health

maintenance organization's service area.

F. For purposes of applying this section, "insurer" when used in a section

cited in subsections A and B of this section shall be construed to mean

and include "health maintenance organizations" unless the section cited

clearly applies to health maintenance organizations without such

construction.

What up, T!

John Mayer says hi...

Meet my oldest nephew...

This is JJ.

Why did they put this on YouTube? Hawaiians love their karaoke a little too much.

I did do one more thing today...

Autism Speaks launched a multi state insurance legislation campaign today.  I sent a link to their website to Delegate Jackson Miller.  Since I have spoken to him about the problems related to coverage on several occasions, I fully expect that he will be in touch.  I can't wait until we get something going here.  Reminds me that I have a few letters to write tonight, including one to Governor Kaine.

I will take up knitting one day.  I promise.

Combating Autism Act has been funded...

Now hopefully the money can get out and do some good.  

Not much going on here.  Jimmy had therapy this afternoon.  He paid attention well, but had sort of an off day.  He took a nap, which never happens.  He needs the rest, though.  He has session again at 8 a.m. tomorrow.  

I contacted all three major Democratic campaigns this week.  My messages were promptly thrown into the policy abyss.  John Edwards campaign did take the time to call me back and said that their policy people would likely be back in touch.  I like Edwards a lot right now.  

Maybe I should call McCain's campaign next week.  They seem like they are doing well.  Maybe Huckabee too.  I have no idea who could be considered third in the Republican race.  It seems in flux.

Genetic glitch raises autism risk

Chromosome 16 is what they are suggesting now.  I would love for them to find a cause or a set of causes that cause autism.  It would be a place to start forming real treatment.  

"They found that in people with autism, a segment of a chromosome that has genes linked to brain development and various developmental disorders was either missing or duplicated far more often. The defect was inherited in some cases, but more often the result of a random genetic accident."

The Indignities of Therapy

Okay, I have kind of kept quiet on one of my biggest life stressors - Jimmy's therapy schedule - for fear of appearing ungrateful.  I am pleased for the level of help my son is getting.  I have worked hard to secure it for him.  But let me tell you what having nine hours of therapy a week for your child is like.  It's nine hours out of a life that has 40 to 50 hours a week cut out of it for work already.  Juggling it wouldn't be so hard if the "professionals" (and I am using the term loosely) working with my child actually got me a schedule in a timely fashion.  Getting January's schedule on New Year's Night isn't helpful.  It does beat the heck out of the months I received no schedule at all.  I guess that schedule would have also been better received if it had been correct (they scheduled him for 11 hours when he only gets 9) and if they had asked about our weekend availability before they scheduled him every single weekend.  We got the schedule straightened out, at least I thought we did until I got a phone call saying that the therapist wasn't going to be there at 3:30, she would come at 4:15.  

When your child has autism, I guess the people working with you expect it to be your life.  Is that healthy?  I don't know, but it certainly isn't fair for Jacob, who I can't even sign up for soccer or swimming lessons this spring simply because I don't know from week to week what schedule the lead therapist is going to present or rescind.  Try to live your life at the whim of others.  It sucks.  

It bears repeating...

From the Autism Society website...

• 1 in 150 births
• 1 to 1.5 million Americans
• Fastest-growing developmental disability
• 10 - 17 % annual growth
• Growth comparison during the 1990s:
  • U.S. population increase: 13%
  • Disabilities increase: 16%
  • Autism increase: 172%
• $90 billion annual cost
• 90% of costs are in adult services
• Cost of lifelong care can be reduced by 2/3 with early diagnosis and intervention
• In 10 years, the annual cost will be $200-400 billion

Hillary Clinton has an autism plan as well...

That means all of the "Big Three" Democratic candidates have an autism platform, while the other Democrats and Republicans do not... 1 in 150 children and possible 10% of boys my son's age are autistic. At least Hillary Clinton, John Edwards, and Barack Obama recognize the pressing need - insurance companies do nothing for you when your child has autism (especially Kaiser Permenente) and there is little help to shoulder the crushing burden of the needs of these kids.

I know it is politics and what not, but I thank Senators Clinton, Edwards, and Obama for taking a stand (at least on paper) to help kids like my son. It means everything to me.

Maybe I am a little too political, but I love Jimmy. If you were in my shoes, you would be screaming too.

We had his evaluation today. I will post at more length when we get the full results. Suffices to say that he is not MR.

This is why we should be afraid...

This is from another parent's post on a list that I am on.  10% of young boys in this country are autistic to some degree.  What will be out there for them in the future?  

"Like a lot of parents, I am concerned about what will happen when my
son's generation (9 years old) and the rest of his peers with autism
(10% of male population that age, according to CDC) mature and need
services. My son also does not have mental retardation by the "book"
and so does not qualify for group living by current standards. This
is going to be a huge social problem for our country, and for us, as
aging parents and caregivers."

Melting Down

Jimmy melted down for an hour last night and a good half an hour this morning.  I have no idea what this morning was about.  Last night was a battle of the wills.  He wanted to get in the window naked and we stopped him.  Then he wanted to flip the switch on the wall - it's the outlet the computer is on.  We battled over that and it devolved into this kicking and screaming tantrum that I am not used to seeing from him.  I can't wait to talk to the doctor tomorrow.  

It's Friday

The husband had his third shot in his spine today - the herniated disks from the car accident.  We still are unsure about whether or not he will actually need back surgery.  There is a chance he won't - it's pretty wait and see.  He got a call for an interview on Wednesday with a company that he has submitted resumes to for a variety of positions - some contract, others full time.  That's the live one at the moment.  We are only a week into the "paid vacation" as my sister likes to call it, so I guess it isn't too bad.

Jimmy has a touch of a stomach bug.  I heard his stomach make a weird noise as he raced to the bathroom.  He made it, but it was messy - wound up in the tub.  I hope he is feeling well enough to go to respite tomorrow.  I am solo with Jacob for the afternoon at the mall again.  I am giving the husband a day off to recuperate.  Maybe I can get him to do Sunday so I can sleep.  I need sleep.  I am a little deprived this week.  

Two Dems that didn't mention autism on their campaign website...

Dennis Kucinich and Mike Gravel did not mention autism on their campaign websites.  In fairness, Congressman Kucinich is a member of the Congressional Autism Caucus, so I am fairly sure that he is active on the issue.  My husband, being the darling he is, just wants to vote for him because his wife has a tongue piercing and is gorgeous and half his age.  I am sure she is more accomplished than merely all that.

Bill Richardson's on board...

Bill Richardson's healthcare platform mentions autism - the sad thing is it had been so long since I have heard about him that I forgot he was running:

Autism

First of all I am for strongly increased research on autism. The number of children in this country affected by autism is just staggering. [1 in every 150 children] Comprehensive and universal access to health care is part of the solution. I fought for increased funding in New Mexico for outreach, education, treatment and awareness. This is something that I have been talking about on the campaign trail everyday and it will be a priority in my administration.

Who doesn't talk about autism? Part 2

You can add Ron Paul and Duncan Hunter to the list.  Mitt Romney?  The L.A. Times article above quoted a parent who was at a campaign event:

"Among the disappointed Iowans was Republican Linda Wessels, 41, of Rock Rapids. At a Romney forum in Sioux Center, her autistic 5-year-old son, Sam, asked the candidate how he would help children with the disorder.

"Cute little guy," Romney responded before launching into a monologue on topics including stem cell research and cloning — but not autism.

"I felt avoidance of the issue," Wessels said."