Soccer practice...

Begins tomorrow. At long last. It took forever to get enough of a team together and then the coach had to bail out. But it seems to have been resolved and we will be practicing here in Manassas Park, at Signal Hill, tomorrow night. We went for team photos and everything. Of course, to keep Jimmy in the photo, I had to be in it as well. The girls doing the photos were over the moon about our inidividual photo, but I didn't the the digital. Guess I have to wait for the hard copy.

He was right...

From Time magazine...

"According to Kim Hyang Sik, in one of these calls, just last New Year, her nice Kim Hyang Im — Seung-Hui's mother — confessed to her aunt and other relatives that her son had been diagnosed in the U.S. with autism."

I feel ill.

An interesting observation

My husband commented on the man who committed the horrible atrocity at Virginia Tech. He was chilled by the comments that the shooter was an individual who could not make eye contact with other, a person who wasn't capable of speaking in conversation. Asperberger's? It sounds familiar. Not that many spectrum people grow up to be mass murderers, but it does sound, according some press accounts, that he wasn't fully understood by his own family.

IEP Meeting

I am sure some of you were wondering if I survived it. The answer is yes. We got everything we wanted... consult and direct services are now written into the IEP as well as parent training. The speech language goals are much more appropriate to his disability. The occupational therapy stuff - well, the therapist is fantastic, so we are always well covered there. I finally got a chance to apologize to Jimmy's teacher about all of the drama. I didn't like the Rifton chair, but I hated the way the administration handled the situation after that initial conference. I think some good is coming of the situation, but someone got hurt in the process. I am never going to feel great about that. I think the thing that was most interesting about my IEP meeting is that the principal did not come. I did have the head of special programs, but he always attends.

I also have my pet SEAC cause for next year. I need to convince the city to hire a second speech therapist. The regulations state that they only have to employ one speech therapist for every 68 students served. We have one serving 70. Moreoever, no other district in the area is making the same demands of their therapists. The one I know outside of Manassas Park serves 50 and that keep too busy. When you have children with issues like severe articulation problems, being completely non-verbal, etc..., 20 minutes a week is ridiculous. And no one picks up the slack. Health insurers aren't required to do it (that whole habilitative versus rehabilitative thing again), they pawn it off on the schools which don't have the resources to do it correctly. It's insane. I had these great goals in Jimmy's IEP and I realized that the person who wrote them won't be there at the next meeting. As a matter of fact, I have not had the same speech therapist at Jimmy's annual meeting ever. From one year to the next, it changes.

We have parent training tomorrow night to work on the poop issues. He was playing in it again this evening. I also have to figure out what to do about getting my homework done for Wednesday. My timing is such that I can't take a personal day. Blah.

A big Jimmy week

A quick post... I have SEAC tonight, in preparation for next week's school board meeting. And Thursday is the IEP meeting, the first since the Rifton chair incident. I will give a lengthy post of the proceedings Thursday evening.

My family doesn't schedule visits...

They just show up. I pull into my parking spot just before Jim pulls in his, shortly after 6pm. Jim runs in the house to go to the bathroom before we split the kids to do errands. I had just gotten back from the doctor after being diagnosed with strep and needed to go to the pharmacy. As I am sitting in the car, a man walks up to my window. It's my brother-in-law Jamie. He is up from Texas for business in Richmond for the week. No one told me a thing. Not a word. Didn't think anything about my sister's multiple phone calls to work today. Nope. We went to dinner and he played with the boys for a while before heading back. He is returning tomorrow night too. He could be hitting the bars while he is away from my sister, but no, he wants to see his nephews. He is nothing if not family oriented. I think its sweet. Of course, the timing is horrible as I have a presentation for class Wednesday night, meetings tomorrow, and a raging case of strep. But I am happy. Jimmy and Jacob are both having the best time with him.

We're Back

And our washer is working. An Easter miracle?

Going Home

Hopefully today. I hate going away. With kids, its not really a vacation, more a change of venue. This venue doesn't have enough toys, doesn't have all the safety mechanisms that we have set up - the gates, the doorknob handles. I keep finding Jimmy out on the balcony, stacking chairs and getting on top of them. I am terrified he is going to go over the side. I don't sleep as well, because I am trying to listen for him. Oh, and we only have dial up - our wireless card is dead and we aren't investing anymore in this laptop. If I get a summer school contract, I am lobbying for a iBook.

I'll post pictures when I get home. Hope you all had a great week.

Greetings from Massanutten

We are currently on vacation. It's going okay. Getting out of the house was a joy - our washer died before we got the last of the laundry done. First order of business is to purchase a new one, as the laundromat isn't an option for even a week. The trip itself has been uneventful. Well, except for the urinal cake incident - I invited the husband to guest post, but he doesn't want to talk about it. He was fascinated and reached in while a guy was doing his business. There's a story he'll be telling for a while.

Massanutten actually has a Kids Rec program and they actually take autistic kids. We actually had a meal without them. It's pricey (more than $10 an hour each), but it was nice to have a break. My in-laws were up yesterday, so we also got out to see "Blades of Glory," which was dumb, but hysterical. There isn't a whole lot up here for small kids. The new indoor waterpark's small fry area is so small, it isn't even worth admission. They have a great playground, which we have hit everyday. I'd be more relaxed if I wasn't lamenting the washer. Oh well.

Hit you again when I get back.

Ten Toys That Speak to Autism

My mom, who has been waiting since Christmas, is coming to buy the 8X8 moon bounce today. I wonder if he is ready for Tinker Toys.

Opposite End of the Spectrum...

Not the autism spectrum, but the familial, for sure. I was concerned about Jacob's articulation, so I put him through Childfind. Turns out that was a huge waste of time. His articulation was great, as was everything else. I told the Childfind coordinator that I had never raised a "normal" kid before. She looked at me and said "You aren't." Jacob possesses scattered skills intellectually to the age of about eight. He is very intelligent and advanced, completely the other end of things. He has two more years until he can even enter school because of his birthday. Finding a preschool is now a holy mission for me - I fear what could happen if I don't keep him challenged.

My date with Jacob

Jacob and I had some quality one on one time this weekend. We went to have a funny face pancake at Ihop. Then it was off to check out a new preschool - Chesterbrook, on the far side of Manassas. A bit more than what we are paying now, but definitely a preschool and not a daycare. A more structured curriculum and a gorgeous facility, but it will be way out of my way in the morning. But I am thinking about it. After an hour checking that out, we went to see TMNT. He is a boy obsessed now. The movie was actually pretty good and he did a great job sitting through it. It was about 90 minutes long and I think that's all he can do right now.

I always feel pangs of guilt when Jake and I do things like this. They are things that I did not have the pleasure of doing with Jimmy first. I'll be enjoying the moment with him and then I will just feel this stab and my eyes will start to well. Why don't I get to share these things with him? I take Jimmy out to eat, but he bounces around. I usually have to get a box because I don't have the opportunity to finish my meal. I can't imagine trying to get him to sit through a movie. I hope we will someday have our dates, too. I want to share these things with him, have special time with him. You know, time that doesn't involve an ABA therapist.

Expanding the Promise for Individuals with Autism Act of 2007

Senators Clinton and Allard Introduce Historic Autism Services Bill
Tuesday, March 20, 2007

Autism Society of America Welcomes Senate Legislation to Support Autism Community

The Autism Society of America (ASA) hailed today’s introduction of the Expanding the Promise for Individuals with Autism Act of 2007 as landmark progress for Americans living with autism and their families. This legislation, if passed, would provide approximately $350 million to improve access to comprehensive treatments, interventions, and services for individuals with autism and their families.

ASA strongly supports the Expanding the Promise for Individuals with Autism Act of 2007 and urges all Senators to cosponsor this important legislation. “This bill specifically addresses the most critically important issue to the autism community today obtaining appropriate services across the lifespan,” said Lee Grossman, President and CEO of ASA. “Our families and individuals with autism are pleased that their voices have been heard by Senators Clinton and Allard, and encourage their Senate colleagues to support this legislation.”

The proposed legislation aims to:

* for the first time, convene a task force to evaluate and report on evidence-based biomedical and behavioral treatments and services
* establish State-based demonstration grant programs to provide evidence-based autism treatments, interventions, and services for children and adults
* support protection and advocacy systems to address the needs of individuals with autism and other emerging populations of individuals with disabilities.
* fund expanded access to coordinated multi-agency treatments, interventions, and services to children
* provide supplemental grants for training and technical assistance to service providers and educators and to establish a national center on autism information.

ASA, its national network of chapters and other autism organizations joined with Easter Seals, National Disability Rights Network, Association of University Centers on Disabilities and other organizations delivering needed services in calling on the Congressional leadership to support this welcome—and critical—federal legislation for families.

Manassas Boy Hit by Train

This story was in the news last week. A six year old got clipped by a train as he was walking along the tracks, leaving him critically hurt. My secretary heard more on the radio today - the boy was autistic and had escaped his house. His parents quickly noticed and called to report him missing to the police, but it was still five minutes after he had been hit by the train. That just chills me.

Autism t-shirts

Okay, so I have recognized the fact that sometimes it might be beneficial for Jimmy to be identified by his disability - is this t-shirt too much? Cafe Press has like 3,000, so I really need some input here.

Sweet Victory!

Jimmy's services have, at least for the next 90 days, been upped from 2 hours a week to 12 hours a week as a result of today's FAPT meeting. This has been a long time in coming, but I am elated!!! We still get parent training, 2 hours every other week. Having that much therapy is a huge burden on our schedules, so having it re-evaluated on a frequent basis isn't all bad. I am just happy that he will have the services.

Jimmy at the art show...

(For the sake of vanity, I must mention that I was sick with a kidney infection and later had an allergic reaction to the antibiotic they had me on. I was running a fever, which is why I look hot, sweaty, and absolutely hellish.)

Here is the story. Last Thursday, I show up to pick up Jimmy, only to run into the principal. (Yes, I was polite.) Turns out there is an art show that night. Jimmy obviously can't tell me, but it did make it in the last newsletter - I just don't get the usual reminders that parents get from their kids. Turns out Jimmy has a piece in it. I call Dad - Thursday is his late night at work, so he is completely deflated at missing it. My friend Diana, who was helping me with pick ups (okay, she helps me with EVERYTHING these days) had her camera in her purse. We race over to get Jacob and then turn around and head back to the school. There are a ton of people there, Jimmy is way overstimulated. He is alternately going limp and stimming up a storm. All we want to do is find this artwork, take a photo, and get going. We find it - it has his name on it, but no class.

Backtrack a few months to the fall. There is a big display of Cougar Elementary Pride, featuring the class of every single grade, except the two autism classes. I was crushed. It just felt like a huge slight, but when I asked the administration, they blamed the PTO. I let the resentment fester until the whole Rifton chair thing broke. Then I decided to address it. The only member of the PTO leadership who I could find a phone number for - that was the poor soul that got my call. He apologized for it, attributed it to the fact that Jimmy's class isn't considered a homeroom on the list they got from the school, and said he would address it with the group and get back to me. That was a month ago and I haven't heard anything. Last week, I e-mailed the president of the PTO. Not a word from her either. A few days later, I am at the school for this art show and there is no classroom name on my son's artwork. I have decided that the people over at Cougar are officially trying to will the autism classes out of existence and the kids in them are non-entities, not worthy of being proud of.

At least that's how I feel. I am waiting for someone at that school, anyone, to show me differently.

Oh, one more thing, the most important thing. He did really nice work on that. I am very proud of him.

Cliched Song Lyrics Post

Woot woot!!! I have been listening to this a bunch, though. I would love to meet the Dixie Chicks. I could see having a beer with them - they would get me.


Taking the Long Way Around by the Dixie Chicks

My friends from high school
Married their high school boyfriends
Moved into houses in the same ZIP codes
Where their parents live

But I, I could never follow
No I, I could never follow

I hit the highway in a pink RV with stars on the ceiling
Lived like a gypsy
Six strong hands on the steering wheel

I've been a long time gone now
Maybe someday, someday I'm gonna settle down
But I've always found my way somehow

By taking the long way
Taking the long way around
Taking the long way
Taking the long way around

I met the queen of whatever
Drank with the Irish and smoked with the hippies
Moved with the shakers
Wouldn't kiss all the asses that they told me to

No I, I could never follow
No I, I could never follow

It's been two long years now
Since the top of the world came crashing down
And I'm getting' it back on the road now

But I'm taking the long way
Taking the long way around
I'm taking the long way
Taking the long way around
The long
The long way around

Well, I fought with a stranger and I met myself
I opened my mouth and I heard myself
It can get pretty lonely when you show yourself
Guess I could have made it easier on myself

But I, I could never follow
No I, I could never follow

Well, I never seem to do it like anybody else
Maybe someday, someday I'm gonna settle down
If you ever want to find me I can still be found

Taking the long way
Taking the long way around
Taking the long way
Taking the long way around

A few photos for the FAPT team...

This is what happens when I give four minutes attention to my three year old. Jimmy uses the bathroom and does this. The sad thing is there was a poopy hand print on the toilet paper. The child really tried - he just can't call out for help.

I am so out of my league raising him. God, please help me.

Consult has begun...

Well, it's been a busy week. Consult has begun for Jimmy. We have parent training on Sunday, so I am sure that I will hear about how things are going then. I know the teacher is very upset at losing the chair. I feel badly for her, but her boss agreed to move away from it and bring in consult and failed to keep her word when she balked at the consult. I had no choice but to pull the plug then. Once I learned how illegal this was, they were lucky I didn't call a lawyer. That's probably a little dramatic because the truth is there are some excellent people in this district - ultimately, the School Board and the Head of Special Programs helped me as they were supposed to. I guess you can say that in this case, the system worked.