Wednesday, June 25, 2008

Summer photos of my youngest child...

Since I just finished day 3 of my summer with Jacob, I have busted out the iPhone a bunch to document our adventures.












Autistic Toddler Kicked Off Plane

God, this is one of my worst nightmares. I hate travelling with Jimmy. I have flown several times alone with both boys. The only one that wasn't a complete nightmare was an American Eagle flight (in the interest of full disclosure, my brother-in-law works for the airline, though not in an airport) where Jimmy had his medication before flight. While I know I have irritated some passengers in the past, I have encountered more sympathetic types than jerks. Autism has enough of a profile that even if people don't have a clear idea what it is, they have heard of it. Flight crews, especially with some explanation as you are boarding, usually are pretty accomodating as well. American and American Eagle have always taken extra care to make sure that I had enough of everything in the food and drink department (back when such things were complimentary!!) JetBlue's flight attendants were nice enough to watch a sleeping Jimmy and a wakeful Jacob so I could go to the bathroom.

That's not to discount this woman's experience. She and her son were treated horribly. It might have been because of the seatbelt. The only thing they can't budge on, which I understand completely, are the safety issues. Jimmy hates the seatbelt in either the car or the plane. The Angel Guard has made my life much easier in the car. Unfortunately, it won't work on a plane seat belt. He is also too big for the five point restraint of traditional car seat. It would be nice if they had something that was as effective as the Angel Guard on an airline seatbelt.

My biggest challenge is getting through the security line with an autistic son that is mild clausterphobic. I hate the security people at the TSA!!! Talk about lack of understanding and rudeness... Especially at Dulles and National. Oh Lordy!!!

Thursday, June 19, 2008

School Leaves Autistic Kids Out of Yearbook

Actually, I had something similar happen to Jimmy's classroom a few years ago. His class was left off the Mini Cougar Pride wall, as it wasn't considered a homeroom by the PTO.

School Leaves Autistic Kids Out Of Yearbook
Parents Say Act Done Intentionally, School Disagrees

POSTED: 4:08 am EDT June 18, 2008

ROSEVILLE, Calif. -- The parents of twin autistic boys left out of a yearbook are accusing the school of discrimination.
Darla Granger said her sons Holden and Hunter were purposely left out of their Roseville, Calif., school yearbook -- along with the rest of the school's special needs children.

"When your own school district and the people that are supposed to be there to support you and your kids and your situation sort of shun you, it is hurtful," Granger said.

Holden and Hunter Granger, who are in second grade, are students of the Placer County Board of Education, which assigns special-need students to various schools within the district.

The boys are in a collage photo in the yearbook, but the school's special needs class, including teachers, is missing.
"I got the book and was excited to look up their class and see their pictures with their names and their teachers, and they weren't in it," Granger said.

Darla and her husband, Blandon, have filed a complaint with the Placer County Board of Education, but said they aren't taking legal action and would just like to ensure that the class pictures of their children and other special-needs students are included in future yearbooks.

The Placer County superintendent who oversees the special needs program at Quail Glen Elementary said she thinks the incident was an oversight, not a malicious act.

"I do have a hard time understanding how they could have not noticed that every autistic child from their campus was missing," Darla Granger said.

The boys' father said he doesn't know if the act was intentional but doesn't think care was given to include the children with special needs in the yearbook.

"I just felt like I needed to speak out," Blandon Granger said. "I feel like we are owed an apology."

I did make the cover...


The photo is from when they did the first article, sans makeup. But the angle isn't bad. At least they didn't use that same photo of me trying to pull up Jimmy's pants!!!

Side note for my sister:
Becky. show this to dad and tell him I will send the original when he gets out of the hospital.

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.