Thursday, June 19, 2008

I am on the school board...

Can you believe it? I will write more later!!!

Friday, June 13, 2008

Autistic Boy Voted Out of Class Will Likely Sue

"A potential lawsuit over whether a 5-year-old's rights were violated when he was voted out of his kindergarten class could have merit, legal experts say.

Hiram Sasser, director of litigation for Liberty Legal Institute in Dallas, said the St. Lucie County School District should take immediate action against the teacher and implement training for the other teachers so this doesn't happen again.

"If they do this, that will go a long way toward healing the community," he said."


I hope this boy's mom haves at the teacher like a pinata in a court of law.

Getting along well...






Chloe is making friends fast...

Jimmy ran for the door when we were getting out the car and I mentioned seeing Chloe. He spent twenty minutes playing with her. With his attention span, that's an eternity.

Thursday, June 12, 2008

Meet Chloe...




Mistakes were made... and I made them.

Yesterday I was meeting Jimmy's bus up at the park, as I have done since DH started working downtown. As any good mom does, I was multitasking, cleaning out the car while getting ready to leave. As I walked back to the car, I heard a little meow. This kitten came charging after me, a young little thing. She follows me up to my car, meowing the whole time, finally trying to get in. I pick her up. She is scrawny and I can tell she has fleas. She never balked at getting picked up. Jacob's eyes got wide and shouts "Kitty!!!" I could have left her there... wait, no I couldn't. I figured given the time of the year, she was part of an outdoor litter, possibly wild. I went by the book - I called animal control, reported the find, and even provided the photo. The chances of anyone claiming her is slim (especially after I present them with the $150 vet bill), so we will call her Chloe.

I have missed Buster every day since I had to put her down. I had wondered where, when and how I would find another pet. I didn't have to look - she found me. Both boys are completely smitten, but Jimmy just lights up with her around. He is a little less hands on (meaning less pestering) than Jacob, but he plays with her and pets her so nicely. And she seems to dig it. She is what I needed, when I needed it.

Tuesday, June 10, 2008

Whoops...

Okay, so it has been a while.

What's up? I guess the main thing is that I am up for the school board. In Manassas Park, it's an appointment process. I am one of three candidates this round. I had an interview last week and there was a public hearing tonight. I love my work on the Special Education Advisory Committee, but started wondering some time ago if I wouldn't be a better advocate for more kids if I put my name in for the school board.

DH encouraged me this time around. Okay, he gave me his blessing. As he left the house, he told me to "do well, but not too well." I think he is resigned... It's a job I want to do, if not now then in the future. It funny - someone on the council asked about this blog. I don't think they knew that it wasn't political, that it was just about Jimmy, Jacob, and the experience of being a mom to two distinctly different and exceptional kids.

We have also been looking at single family homes. We had an offer accepted on the other side of the tracks. Now we get to go through the mortgage process (we have a pre-approval - the queen of unorganization now has get paperwork together) and try to get this place rented. Mercifully, the mortgage isn't tied to the rental, but I don't want to be house poor, so we are seeking tenants.

And it's the last week of school. Jimmy has his neurology workup, Jacob has his physical for Pre-K, and the days at my job are going by at break neck speed. If I spend the summer moving, I imagine July and August will be the same way.

Friday, May 30, 2008

Kindergartener Voted Out of Class by Classmates

Not a surprise that he is on the spectrum. Forget just firing the teacher - she should lose her license.

(CBS) A Port St. Lucie, Fla., mother is outraged and considering legal action after her son's kindergarten teacher led his classmates to vote him out of class.

Melissa Barton says Morningside Elementary teacher Wendy Portillo had her son's classmates say what they didn't like about 5-year-old Alex. She says the teacher then had the students vote, and voted Alex, who is being evaluated for Asperger's syndrome -- an autism spectrum disorder -- out of the class by a 14-2 margin.

Barton and her son, Alex, talked exclusively with Harry Smith live from West Palm Beach, Fla.

Barton filed a complaint with Morningside's school resource officer.

St. Lucie School spokeswoman Janice Karst said the district is investigating the incident, but could not make any further comment. The state attorney's office concluded the matter did not meet the criteria for emotional child abuse, so no criminal charges will be filed.

Teacher Wendy Portillo was advised by the school board not to speak to the press so she declined our interview offer.

Sunday, May 25, 2008

The Music Dances to Technoviking



The Technoviking video has been around for a while. This is the captioned version. Basically, this guy was a participant in protest against the commercialization of the LoveParade in Berlin (more on Wikipedia) and was videotaped protecting the virtue (for lack of a better description, I suppose) of the blue haired woman. The early moments of this video has produced near iconic images for those of us who worship the irrelevance of the internet. It's pretty funny, though.

Walmart article...

When the Manassas Journal Messenger changed websites, my links to the articles about Jimmy ceased to work. I was messing around and found the orginal text of the article on Walmart. I thought I would repost it, just so I don't lose it again.

02/08/2007

Mother flushed with success after persuading supermarket to change toilet system for autistic son

MANASSAS PARK, Virginia, USA: Rachel Kirkland has made a difference in what she considered an unlikely place to do so.

The Manassas Park resident is the mother of a six-year-old autistic boy who goes through both in-house and community therapy sessions in an effort to acclimatise him to the real world. Part of that experience involves a trip to Wal-Mart on Liberia Avenue in Manassas.

Unfortunately for her son, Jimmy, the restrooms in the bustling retail store had automatic toilets that flush when a person is finished. That loud and unexpected sound of water rushing had the boy, who was recently potty-trained, avoiding the restroom. Instead, he was urinating in his pants in the middle of the store, instead of using the facilities.

Loud sounds are one of the many things that can profoundly affect individuals with autism, and Jimmy was scared to go back to the restroom.

So Kirkland asked management at the Liberia Avenue store if they could replace one of the automatic toilets with a manual flush toilet. The response initially was no, said Kirkland. She said they had told her that automatic toilets were necessary for sanitary issues.

Kirkland decided to call the corporate office. Corporate told her it was up to the individual store on whether it would replace the toilets. When she called the store back the next day, management decided to grant her request.

The family bathroom now has a manual toilet, thanks to Kirkland, who said she was surprised at how little effort it had taken to get them to accommodate her son and those like him.

"It was shockingly easy," Kirkland said. "If you identify the child and his problems, the lengths people go to help you is amazing."

A national spokeswoman, Marisa Bluestone, declared: "Wal-Mart felt it was important to take care of our customer. We always encourage customer feedback."

Kirkland's efforts have inspired her stepmother, who works in a Dallas-area Wal-Mart and said she will take up the toilet issue with her manager.

Unfortunately, Jimmy's issue is a microcosm of a disorder that has grown significantly in the past decade. There are now more than 1.5 million cases of autism in the United States.

With the prevalence of the disorder has come a corresponding need to battle it. The budget for the National Institutes of Health funding for autism-related research has increased by more than 80 per cent, from $56 million in fiscal 2001 to an estimated $101 million in the 2007 budget, including support for Autism Centers of Excellence.

It was parents like Kirkland who were on the front line, fighting the disorder and educating the public, said Jennifer Lassiter, a Round Hill resident who started a school for autistic students in Purcellville called The Aurora School.

Lassiter is also the mother of an autistic child who has experienced a similar fear of automatic toilets. She praised Kirkland's efforts to help those with this disorder.

Along with the Wal-Mart in Manassas, some other local businesses go out of their way to assist families with the disorder.

According to Lassiter, Red Robin Restaurants, a national chain that started in Seattle in the 1940s, is one such place.

Lassiter said, that if requested, they could seat you in the corner where there was no speaker. There are also locations in the restaurant where you can see a TV but not hear it. All of this helps with potential overstimulation of the senses, which is common among autistic individuals.

Eric Van Hook, an assistant manager with Red Robin in Woodbridge, said accommodating those with special needs was more just common sense and part of a larger customer service attitude on which the restaurant prides itself.

"We want to take care of them [customers] as if they were coming into our house," Van Hook said.

Lassiter said the Disney Store in Reston Town Centre was also very accommodating, letting anyone with an autistic child come to the front of the line. Autistic individuals generally do not like to be touched, and coming to the front of the line helps to alleviate a potentially stressful situation.

Lassiter said the key to combatting the disorder was for parents to recognise their children's condition early and do something about it. The other key is to make their community aware of those with the condition.

On that matter, Kirkland is doing her part, fighting a battle she thought would be a losing one.

"I love to hear when someone can get a really big company to be responsive that way," said Lassiter.

(Source: Potomac News, August 2, 2007)

Friday, May 23, 2008

Exhausted...

I am so drained. I was kind of counting on having tomorrow to myself while Jimmy was at respite. The DH has a lot of work to do, so Mini-Me is going to be with me. I would count down the days left on my contract, but it would require too much mental energy. It's such a confluence of events - not merely work or home or kids, just everything - that I really need to veg for a while. I am hoping for a summer of gym time, swimming lessons, and naps... Yes, I have lots to do to put my house and life in order, but I hope to balance that with a little downtime.

Tuesday, May 20, 2008

Autistic Boy Banned From Church

Wow... and it's the Catholic Church no less. I used to be very pro-choice, a view that has been tempered by the experience of Jimmy and the thought of what I would have missed if I had been given a choice. But to have the Catholic Church ban a child from attending mass - wow, they are such hypocrites sometimes. Yes, I did read the article - the child had serious behaviors at church, to the point of scaring people. That doesn't give the parish the right to cut the family off completely from something so vital. I feel for that mother. Faith is what gets you through and her own church has attempted to destroy it. Pathetic.

Wednesday, May 14, 2008

Why can't the Virginia General Assembly and Governor Kaine do this here???

Autism Speaks Applauds Florida Governor Charlie Crist and State Legislators for Passing Autism Insurance Legislation
Florida's Senate Bill 2654 Important Step in Requiring Coverage of Necessary Autism Therapies


NEW YORK, NY (May 5, 2008) Autism Speaks today joined Florida families in applauding Governor Charlie Crist and the state's legislators for passing Senate Bill 2654, which will ultimately require insurance carriers to provide coverage of evidence-based, medically necessary autism therapies. Governor Crist is expected to sign the bill into law in the coming weeks. In many states, insurers explicitly exclude coverage of these therapies from policies, which places a significant financial burden on families seeking to provide their children with necessary services. Autism Speaks has launched a multi-state initiative to address this discrimination.

Senate Bill 2654 – passed by the House in the very last minutes of the legislative session -- requires that insurance companies cover up to $36,000 a year for Applied Behavior Analysis and other therapies for children under age eighteen, with a lifetime limit for treatments of $200,000. The legislation gives insurance companies until April 2009 to negotiate a compact with the State Office of Insurance Regulation to develop autism coverage plans before the mandate takes effect.

“This new Florida law represents crucial progress in the national effort to secure autism insurance coverage and end discrimination again families facing autism,” said Elizabeth Emken, Autism Speaks vice president of government relations and a member of the Florida Taskforce on Autism Spectrum Disorders. “This bill mandates significant insurance benefits for the medically necessary interventions that are critical to the quality of life of children with autism. It also provides a voluntary compliance process through which the insurance industry can avoid the statutory mandate by agreeing to provide appropriate benefits for autism.”

Autism Speaks intends to remain involved in the insurance compact process created by SB2654, working with Governor Crist -- a strong supporter and champion of this cause – to ensure that the compact negotiations produce appropriate benefits for the deserving children of Florida.

In addition to Governor Crist, Autism Speaks hailed Senator Steven Geller, for whom the insurance section of SB2654 is named, and Representative Ari Porth and Senate President Kenneth Pruitt for their unwavering leadership in support of this landmark legislation. The organization also thanked Speaker Marco Rubio and his wife Jeanette, and Representative Andy Gardiner for their efforts.

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!

Wednesday, May 07, 2008

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.

Tuesday, May 06, 2008

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. 

Monday, May 05, 2008

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.

Saturday, May 03, 2008

Iron Man Rocks

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

Thursday, May 01, 2008

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.

Wednesday, April 30, 2008

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.

Friday, April 18, 2008

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. 

Wednesday, April 16, 2008

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.