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.

Admiration

"We have a few autistic children in my school and none of them have parents who advocate for them as much as you. I really admire how dedicated you are to doing what's best for Jimmy."

This was from an e-mail my 25 year old niece sent me. She admires me. That's sweet. What she doesn't know is that I admire her more - she had her kids at 17 and 19, by a boy who has never really paid the ordered child support (he was only ordered to pay $50 for both.) She works at an elementary school, she goes to college, and until recently was raising those kids on her own. My sister helped out a lot, by my niece has never let her situation get the best of her. When she finally got married this summer, it wasn't to the non-father of the children, but to a man she loves and who loves her and her children. She is 12 years younger, but has always had the courage to make the best of her difficult choices. I admire her for that.

I Love to Singa - Jimmy's Favorite Cartoon

Eight minutes of giggles to the child...

FAPT Team Meeting

We finally got one... the head of Special Programs told me a week or so ago that we were getting one, but we got the letter today. We go to FAPT on the 19th. The link above describes the purpose of FAPT. Consultative services begin next week - the lead regional therapist is finishing the proposal tonight. I also talked to someone from Our Lady of Grace, the Catholic ABA private school that is in their first year. They have a waitlist and it's $10K, so it seems like a longshot. Anything to get what Jimmy needs, right?

No More Rifton Chair

At least not without a Behavior Intervention Plan. God is great and the head of Special Programs is pretty good himself. The therapists get to put together a proposal for consultative services and I get to worry less about my son. I feel bad that I was heavy handed with Mr. Special Programs, but never send me that kind of news in an e-mail at 4:30 on a Friday afternoon. I did nothing but stew, send e-mails, and make phone calls all weekend.

Getting Hosed...

So, apparently after our meeting a week ago, our principal has had a change of heart over consultative services. I got an e-mail from the head of special programs implying she was pulling the plug on consultative services, before they even get started. So, I am guessing she thinks restraining him in a Rifton chair for his school is completely appropriate and legal. Even though my understanding is DOE law says no. Wow. Of course, he sends this e-mail late Friday afternoon, so I can't respond for a few days. Lovely...

My nightmare...

Apparently, Rifton chair abuse is fairly commonplace among schools serving autistic children. This is just one article I found.