Friday, July 31, 2009

Demand change in the state races... via Twitter...

For a few months now, I have been following the Virginia statewide races. I have always been a civic minded voter, but having Jimmy has really narrowed my focus into demanding answers from these candidates about autism. I am tired of the influence of lobbyists in Richmond whose money is more important that our voices and the needs of these children. Autism is a medical condition. Medical conditions and their treatments, both medicinal and therapeutic, should be covered by insurance. I know Jody Wagner supports insurance mandates (per conversation with her staff in Virginia Beach.) I know Creigh Deeds thinks the market (read: insurance companies) will adjust to meet the needs of these kids, a fallacy likely perpetuated by those lovely Richmond lobbyists. I did talked to staff of Bob McDonnell and while I got a lot of sympathy, I heard nothing that resembled a firm policy statement. I have no idea about Bill Bolling.

I would like to encourage voters in Virginia who care about these unmet needs of families dealing with autism to put this out to the forefront using the latest social media technology... Twitter. Set up an account and following @creighdeeds, @lgbillbolling, @jodywagner, and @bobmcdonnell. Send them notes... you can do a lot in 140 characters. Include (and if you are new, it will make sense after a while) the hashtags #VAGOV and #autism to get this trending. Several of the candidates personally follow the feeds some or all of the time, with staff picking up the slack. I am one person, but if we can get more voices out there, we can see our needs discussed in the campaigns and the debates - insurance, education, services. The needs of our kids have been ignored and marginalized far too long. Let's make change happen.

Feel free to post this to other lists and forward via e-mail. I would love to see this happen for my son Jimmy, his classmates, and all of the other beautiful kids I have met with autism.


Thursday, July 30, 2009

Adding another drug to the cocktail...

So Jimmy has been having a lot of problems with anxiety and OCD issues lately. The Risperdal hasn't addressed them to the degree that we had hoped. The doctor prescribed Zoloft for him. I am a little anxious about it. A third medication seems like a lot. Now's the time to try, before school starts, but I am not feeling... well, great about it. I wish autism was a standardized disorder where you could do x, y, and z and see real benefit. It's just all so hit and miss.

With this new worry, I might need anxiety medication.

Wednesday, July 29, 2009

Depeche Mode

Well, for the ninth time in 22 years, I went to see Depeche Mode live last night. Phenomenal as always. A good number of acts from the 80s and 90s are a mishmash of old and new members, doing some limited recording, often relying on their old catalog for their acts. Depeche Mode is every bit the active band, with their three core members intact (Vince Clarke left in the early 80s and Alan Wilder in the 1990s.) The were touring in support of their new album, which they did several songs from. The remainder of the two hours was sort of a review of the previous 11. They played Master and Servant, Strangelove, Walking in my Shoes, Enjoy the Silence, Home... so much fabulous music.

Dave Gahan is consummate showman. Martin Gore is mezmorizing. Andrew Fletcher... well, he is more than the guy standing up behind the synthesizer. They are truly amazing live. We had seats right next to the mixing board, theoretically, the apex for sound in a venue. T and her eldest Miss M joined me... it was a great night. Thank you, Depeche Mode.


Thanks to William Shatner, I totally understand Sarah Palin now... Thanks for that...

Monday, July 27, 2009

Speaker Pelosi is begging parents to stop calling...

An e-mail from Autism Votes...

"Dear Autism Advocate,

Thank you so much for all of your hard work over the last few weeks as you have continued to call, email, and fax Speaker Pelosi’s office.

THIS JUST IN!...House Speaker Nancy Pelosi has heard you loud and clear! We are now in a very constructive dialogue with the Speaker's office about the importance of ending autism insurance discrimination.

Thank you again for your patience, your perseverance and for recruiting your friends and family to make these calls."

"1. IT'S TIME TO STOP CALLING SPEAKER PELOSI. We will be refocusing our efforts shortly so PLEASE STAY TUNED to our emails! For right now we need all calls, faxes, and emails going to the Speaker’s office to stop!

2. SPREAD THE WORD! Tell everyone you asked to call "thank you so much" and that you will keep them posted on next steps!"

Speaker Pelosi, I will miss talking to your voicemail. That she is asking us to stop calling is too funny. I was planning a visit with Jimmy actually - I guess she just spared me a trip.

Sunday, July 26, 2009

Our friends in Cebu, at it again...

Seriously, they just get better and better. Beats the heck out of cranking out license plates.

Jimmy's 8...

Yesterday was Jimmy's 8th birthday. We didn't make a big deal about as to not confuse him at his birthday party next weekend. My in-laws took Jacob for the weekend, so we had some one-on-one time Jimmy. I didn't understand that not only did have to run Jacob out to Waldorf but back too, so that ate a lot of time, but we made the best of it. I took Jimmy to Toys R Us this morning to use his birthday money from my inlaws. Usually he asks for very little when we were out shopping, but we did the aisle to aisle thing and he left with another MagnaDoodle (those things are gold to him), a monster set of Lincoln Logs, a Star Wars playset, yet another set of Yo Gabba Gabba, a Spiderman ball, and a box of rabbit shaped organic macaroni and cheese. Yeah, I can't explain that one either. We will probably get him something small for his birthday, as the other grandma still has to gift him. My mom is very practical, so it likely a modest toy and some cool new shoes. Jimmy likes the gift thing, so it should be a good time regardless.

With all the car time, it really illustrated the need for me to do something about his seatbelt behavior. He got out of his belt in the back and decided to lean across me to adjust my radio just as everyone was hitting the breaks for Wilson Bridge construction. After the ride back, I went to the laptop and order more Angel Guards. We went about a year without them, but they are very needed. Having him as a passenger has become a terrifying proposition. It is getting to the point where it isn't safe to have him ride in the back without an adult. Hopefully they will come this week, so I can relax a little bit.

A big week... Depeche Mode on Tuesday with T. She is moving back to me to the ever-lovely Gainesville. I am in my happy place. I think our husbands are in mourning. It will be nice to have the bestie around.

Friday, July 24, 2009

Best Wedding Entrance Ever...

I love when Perez shares things with the world.

Congrats to the happy couple!

An Interesting Little Discussion with the DH

He was reading his new Kyle Baker book and found out that in one of his new titles, he loosely drew on the story of the autistic kid in Oregon who was recruited into the Army... nearly. It didn't get as far as the Joshua Fry case, but this Baker character led into a discussion if the label of a disability alone should preclude someone from serving in the military. He thinks that if someone is up to the job and can perform it without accommodation, they should be permitted to serve. He is right, to an extent.

I guess I look at this through the lens of Jimmy, who at two days before he eighth birthday can barely string a sentence together or wipe his backside in the bathroom. Between the experience of raising him and working in education, I have seen a wide variety of children with autism. Some of them I can see living independently and having challenging employment. The kids that fall more closely in Jimmy's orbit - a life on their own is the unlikeliest of scenarios as I see it. I will be responsible for him for the rest of my life, because I think his ability to be responsible for himself is extremely limited.

So, as parents and guardians of these children, we take steps to manage their affairs through legal conservatorships. If you are not of sound mind, you can't legally enter a contract. Your conservator makes those judgments because you can't, decisions that allow you to live in the world, but limiting your risk. When we discussed this, he actually brought up Britney Spears' conservatorship. He thinks she is perfectly capable of enlisting. I said that my understanding is that she is bipolar, a medical diagnosis, and when the conservatorship was established, it was after a series of extremely questionable judgment and behavior. At the time when it was established, she had no business making decisions for herself - evidence the head shaving and Osama Lufti - so her dad legally inserted himself to keep her business going while getting her help and treatment. Conservatorships are legitimate and exist for a reason.

My biggest problem with the Fry case is the conservatorship. According to Fry's attorney, the grandmother told recruiter Matthew Teson about the conservatorship as well as his diagnosis. He didn't listen. When it the conservatorship was presented in front of the JAG, the JAG ignored this legally binding document in favor of the recruiting agreement. In that action, the JAG essentially said civilian laws and protections for the disabled don't matter. Not only did the Marines ignore the medical history of this young man, they ignored the laws of this country that should have protected him. Moreover, the people who, if the attorney is correct, broke the law (principally the recruiter) are not being held to the letter of the law or facing any sort of punishment. To me, that's absurd.

Thursday, July 23, 2009

So I declined to give the Virginia Democrats money tonight..

I told them of the autism bill/Richard Saslaw debacle and while I would consider giving to candidates, the party doesn't get a dime from me until he starts working for the voters again, not the lobbyists. Fat lot of good it does to tell a telemarketer that on the phone, but hey, I felt better.

Wednesday, July 22, 2009

The Summer Update

I have mostly recovered from three weeks of flu and sinus infection. Had the vacation, as it was. This week is the week of the contractor. Getting estimates for flooring from the great flood of 2009, courtesy of the dishwasher. Electrician today. Tomorrow, Service Master will hopefully pick up their blowers. It's been sort of one thing after another for the first 22 days of the month. But there are 9 left... July is salvageble, right???

Jimmy is enjoying his time at Parks and Rec. He loves his trips to the pool. Summer school seems to be going pretty well, too. There has been an uptick on his elopement. The trip to Target was just a miserable failure yesterday. He had the new therapist going after him in a full sprint. Other than that, he has settled down nicely since we got home.

Jacob is making friends at camp. We have swimming lesson this week as well. He has his good days and his bad. I wish he listened a little better. He is hard to rein in... really hard. But when he is being sweet and well behaved, he is just the best kid to be around.

That's what I have so far... Three and a half more weeks until I got back to work. I am somewhere betweeen being excited about returning to work and wishing I had a little more of a break.

Tuesday, July 21, 2009

Special Needs Daycare CUP approved

The 123 ABC Little Learner's Academy CUP was approved today by the Manassas Park Governing Board this evening. While some daycares serve kids with special needs, this is the first daycare center in the Northern Virginia area that serves these children specifically, along with their typical siblings. This won't change Jimmy's arrangement in the near future, as we are very happy with Extended Care (especially with Jacob starting next year), this is an option I wish I had several years ago, when the boys were both younger. I think this will be a huge benefit to families who struggle to work and be comfortable with the level of care their special needs children are receiving in a daycare setting. I am thrilled to see this happen in my community.

More recruiting fun...

A scary comment on Huffington Post that I had to share.

"My son is 23 and a high-functioning autistic. We have been beseiged by recruiter phone calls for the last 4 years. At first, I ignored the calls. Then I started picking up the phone and informing the recruiter that my son is autistic. He cannot handle loud noises, crowds, certain textures of material, certain textures of food (he barfs when he SEES melted cheese), and many other impediments to a military job. They did not seem to care about his disability and made their spiel that he join up and be weeded out in boot camp. I don't think so. What I do not get is how they do not know which young people are autistic, down syndrome, etc. since these people are on Social Security Disability and the government could supply their names to military recruiters as "do not call" people. We apparently do not have enough "intelligence" to weed out developmentally disabled young people from recruiting efforts. Now that's a scary thought!"

This illustrates the abuses of recruiters who see people with disabilities as nothing more than fodder to meet their recruiting goals. If the disability angle doesn't shock you, think about the taxpayers money these recruiters waste by signing these people up to meet their goals, then indicating to parents that they will merely wash out later. This is appalling and why recruiters who engage in this behavior should be subject to criminal charges and incarceration.

Monday, July 20, 2009

Marine Corps E-Mail Address

If you want to share your concerns about the unequal administration of justice between the actions of Joshua Fry and those of recruiter Matthew Teson, contact the Marine Corps at

Joshua Fry Pleads Guilty and is Discharged from the Marine Corps

"Reporting from Camp Pendleton -- A 21-year-old Marine diagnosed with autism and bipolar disorder pleaded guilty Monday to desertion, possession of child pornography and fraudulent enlistment and received a three-year suspended sentence and a bad-conduct discharge.

A plea bargain approved by Maj. Gen. Michael Lehnert calls for Pvt. Joshua Fry to serve one year in the brig with credit for the 359 days already served while he was awaiting court-martial. As a result, Fry is set to leave the brig at Camp Pendleton Marine Corps base by the end of the week, officials said."

I am glad Joshua Fry's enlistment is over and that he will be getting treatment for the pornography thing. I think justice will be fully served when the recruiter Matthew Teson sees a similar punishment for his crimes:

'According to a pre-trial motion filed by Fry's attorney, Marine recruiter Gunnery Sgt. Matthew Teson drove to a group home for the mentally disabled to pick up Fry and sign him up. The enlistment occurred despite a warning from Fry's legal guardian and grandmother that he was autistic, that he was not Marine material, and he could not sign a contract without her permission.

The lawyer's motion claims that Teson urged Fry to not mention that fact on his application."

Teson is even more guilty of the fraud charge because Fry's capacity for sound judgement is greatly diminished by his disability. Gunnery Sgt. Teson has no excuse. The military, especially its leadership, needs to remember that respect is earned, not bestowed. Sadly, actions like that of Teson are a black mark to all members of the military. He needs to be dealt with... severely.

Friday, July 17, 2009

Vacation over...

We have returned home from our vacation. The change of venue was probably the most stressful ever, with Jimmy running out the door towards the parking lot at one point. He really wanted no part of it. He had a two hour crying jag on Wednesday night. Thursday went fairly well, but it became this debate as to whether he slept with us or if I stayed up all night. After Jimmy's run, we literally barricaded ourselves in the timeshare, stacking chairs and the table against the door so he couldn't make another break for it. There was no internet, so Jimmy didn't have his YouTube. I had my lap top on the off chance that Bryce somehow got wireless and to play DVDs. To Jimmy, it was a representation of his frustration. He would just sit in front of it and tantrum. We enjoy it out there, but it wasn't working for Jimmy. So we are back...

Thursday, July 16, 2009

I'm blocked!!

We are at a Burger King in Mt. Jackson. They use this webfilter called FortiGuard, which has this blog categorized as pornography. I have tried to report it, but their server and my computer are having an argument over cookies. So if you are considering FortiGuard as your webfiltering software, you might want to consider a better quality product.

Comcast Employee: "Stupid is a disability."

Sorry it has taken me so long to get this story up. I am on vacation finally (after having the dishwasher break, flood the basement, and having insurance adjusters and water remediation people in) and we have no internet. This is actually being posted from a local public library.

On the way out of town yesterday, I had to drop by the Comcast office to give them my payment for our internet since I forgot to drop in the mail. Getting that stamp on the envelope two days earlier would have saved me a world of aggravation. In the Manassas Park office, there isn’t a drop box to just put into and run. The woman in front of me was returning equipment. So I would up standing and waiting in the office for about 5 to 10 minutes while DH and the boys were out in the car waiting for me.

While I was standing in the lobby, the door to the “employees only” was standing wide open. Three men were in there, apparently talking about colleague, rather loudly, discussing his intellectual ability, using timeless quotes s like “Stupid is a disability,” “Is being stupid a disability?,” and “Yes, it’s a disability if you were born that way.”

You have to feel bad for their karma in life, that the person standing outside the door listening was the mother of a child with a developmental disability, a woman who has spent years involved with the local Special Education Advisory Committee, and who cares passionately for this community of people. I was offended by their conversation. If they had any experience with raising a child diagnosed with autism or mental retardation or another cognitive disability, these men would not have been having a conversation using those terms. My life with my child, while it has moments of humor, isn’t a joke or a laughing matter.

I know people will invoke the ideas of freedom of speech and say that my response was political correctness run amock. I beg to differ. Complain about political correctness all you want, but if you are making comments based on disability, race, ethnicity, or gender, you are likely going to offend someone. Being different somehow opens you up to a world of comments, in my case ranging “What’s his problem?” to “Autism? Can’t you spank that out of him?” to “Couldn’t they tell you something was wrong when you were pregnant?” The implication to that last comment being that I should have aborted him rather than bringing him in to world different than everyone else.

You have freedom of speech on your own time. When you are sitting in a Comcast work room, wearing a Comcast shirt, with in earshot of customers, your speech reflects your employer. If I am a paying customer, I have the right to register a complaint about it. Heck, if these guys were behind me in a checkout having the same conversation, I probably would have said something. In this case, I got the number for the supervisor to call and complain. I also told the men on the way out how offended I was and that I was going to be calling their supervisor. They tried to say that I hadn’t heard the whole conversation, they were talking about a co-worker, and it wasn’t offensive. I didn’t hear the whole conversation. But I heard enough to know that it offended me and they shouldn’t be saying these things within earshot of me, a customer.

I left a message for the supervisor, a woman named Jeanette. Ultimately, I got a call back from her supervisor, a man named Dave. I relayed the incident to him. He was very disturbed by my account and told me he would be following up with the entire staff in the branch, especially the four techs (the three who were initially there were joined by a fourth during the conversation.) It is important that they show better judgment in the workplace in the future, especially around customers. I would hope that they would be encouraged to volunteer within the Manassas disability community, a special education classroom, the Matthew Center, something to illustrate that living with development disability, people often dismissed as stupid, is really not something to joke about.

**How’s the vacation going? We’ll be amazed if we make it through today. Jimmy is having a rough time being away from school and home. Like I said, my life has moments of humor, but it is filled with moments that challenge you and diminishes your ability to do things people take for granted, like go to a timeshare.**

Saturday, July 11, 2009

Congressman Wolf Co-Sponsors the Autism Treatment Acceleration Act

I just got Congressman Wolf's latest missive and I am pleased to see that he has joined the bipartisan efforts of Democrat Mike Doyle and Republican Chris Smith and the House Autism Caucus (we have a caucus, who knew???) in cosponsoring HR 2413, the ATAA, which addresses not only the insurance issue, but the need for services for adults with autism as well. The bill also has some initiatives to better coordination of communication, services, and research. I am thrilled that he has signed on to this and will support it. It is my hope my elected officials in the Senate, Mark Warner and Jim Webb will do the same for the Senate version!

My letter to the editor...

I sent a letter to the editor regarding HB 1588 and the need for mandated coverage for children with autism in Virginia. It got published - you see the flaws when you read it again (d'oh), but it was published essentially in its entirety. Kind of cool.

Monday, July 06, 2009

The last time an autistic recruit made the news....

... two recruiters in Portland were punished.

Clearly, we aren't learning here, folks...

Another article on Joshua Fry

It gets worse... though the first article was vague on this point, this one makes it clear. The recruiter knew Joshua was autistic.

"In his court brief, Studenka said Gunnery Sgt. Matthew M. Teson is partly to blame because he enlisted Fry despite having heard about the young man's troubled past. Studenka accused Teson of being “deliberately ignorant of Fry's disqualifying condition and background.”

The Marine Corps didn't make Teson available for comment.

According to Studenka's brief, Teson met Fry around 2006 while Fry was attending Newport Harbor High School. That was before Fry's alleged theft, possession of stolen property and other behavioral problems led to his 15-month stint at the Devereux Cleo Wallace facility in Denver.

The center, where Fry graduated from high school, treats psychiatric, emotional and behavioral problems in people ages 8 to 21.

At one point, Studenka wrote, Teson called the Fry home in Orange County because he didn't know that Fry had been transferred to Devereux. Studenka said Mary Beth Fry answered the phone and told Teson that her grandson is autistic and not capable of becoming a Marine."

Joshua Fry is in the brig. He shouldn't be - he should be released from the military and returned to community based treatment. Matthew Teson should be locked up for perpetuating fraud upon the United States Government.

Case of autistic Marine brings recruiting problems to the forefront

This isn't the first case of recruiting a young man with autism into the military, but it is appalling. The man is under conservatorship, meaning he can't legally enter a contract. The recruiter knew that, according to the grandmother and conservator, and ignored it. The Marine's own judge ignored this fact as well. I am outraged that our military conduct themselves in this manner, with no respect for the law. The man, while verbal, clearly needs full time care and assisted living. The Marines wanted to give him a gun. Great. Autism should be grounds for exclusion from the military. Heck, if you have asthma, they don't let you in. Autism? Come on.

It's really hard to respect people in uniform when recruiters do shit like this.

Friday, July 03, 2009

If you are ever blue...

Take a few minutes and watch P.S. 22 and their chorus...

Wednesday, July 01, 2009

Matthew Center in Manassas needs volunteers...

If you have time this summer and are local, please consider helping out. The Matthew Center has worked with Jimmy since he was 3. They do amazing things for kids with autism.


Good morning, Prince William. I want to give huge cheers to the Matthew Center for their new summer camp program for kids with autism. It seems like yesterday that this school was merely a vision and now it’s a fabulous thriving center for very special kids.

Volunteers are needed in a host of ways; first and foremost to be 1:1 camp chaperones for boys 6 to 18 years old. This is a fun energetic position where you have the opportunity for the ultimate inspiring link to a kid. Four-hour training will cover strategies and skills needed for the position and certainly afford you a terrific resume-building opportunity as well. This position is suitable for teens17 and older that wants to pursue a career in social work, special education, speech therapy and psychology or if they already have worked with special needs kids. The other volunteer jobs include drivers for their 14-person van to take the kids to various mini field trips in the community two days a week for about 4 hours each trip. Volunteers must be at least 25 years old and have a clean driving record to qualify. Lastly, if you have a little experience with formatting a newsletter in electronic form, you could be a huge help with getting the news of the Matthew Center out to their constituents. For more information, please call Kerry at 571-329-7944.