Monday, September 29, 2008

I needed a giggle...

A classic...

Sunday, September 28, 2008

So we finally got a phone call from the HOA president...

She is going to look at our request, but not until the next meeting. Didn't care about the disability aspect, didn't want to hear about the Fair Housing Act. I am pleased by her agreement to look at it, but not the time frame. We have been waiting since August. I am still thinking about filing a complaint on the basis of the delay, so they might approach this differently for the next person with a disability.

Saturday, September 27, 2008

HUD Complaint

Well, turns out that if you have a Fair Housing complaint, you can file it with HUD and their attorneys and staff handle it for you. Of course, that is the simplistic description of a more involved process. But at least there is a reasonable mechanism for people to assert their rights. I just wish that the Blooms HOA would actually work with us rather than force us into this process.

Jimmy asks to go outside constantly and we have to say no. With the elopement aspect of his autism, it is just too dangerous. I feel badly that I have say no every single time. But I am angry that the HOA and management company are making this so difficult.

Friday, September 26, 2008

Found: Sarah Palin Pageant Video ;)

No Response from Blooms Crossing HOA

They haven't called in days. The management company promised Jim a phone call from the ARB on Thursday and we are still waiting. So I have the contact information for the Virginia Fair Housing Office to file a complaint on Monday and I am looking for a Fair Housing Act/ADA attorney. The law is on our side in this matter because of Jimmy's disability. We wouldn't be desperate for a fence if it were not for him and his elopement behavior (part of his disability.)

Wednesday, September 24, 2008

HB83 Hearing on Monday

Again, my personal thanks to Jackson Miller from the Virginia House of Delegates for co-sponsoring this bill to support his friend Jimmy and other kids like him.

Dear Virginia Autism Advocate,

It's hearing time and we need all hands on deck! All Virginia autism
advocates interested in getting $36,000 a year in private insurance
coverage for autism treatments and therapies for your children need to
be in Richmond next Monday, September 29, 2008!

Join us in the General Assembly Building, House Room D on the Capitol
Grounds in Richmond on Monday, September 29th, 2008 at 1:00 pm as the
autism insurance initiative is reviewed by the Special Advisory
Commission on Mandated Health Insurance Benefits. The members of the
commission, which includes many of your Virginia legislators, need to
see with their own eyes how important this is to you.

Your physical presence in Richmond is imperative to launch the autism
insurance initiative! This is our first opportunity to make a lasting
impression on Virginia's legislators!


1. TAKE THE DAY OFF! Explain to your employer how important this is to
you and your family and plan on attending the meeting in person. We
encourage you to bring your children if you would like but are asking
that you not bring them into the hearing room during the hearing itself.

2. WEAR RED AND GO GREEN! We want to stand out and be bright and bold
as we advocate for our children so wear something red! And Go GREEN -
carpool, fill up your minivans, Suburbans and Tahoes and show up in
droves to show the commission we mean business. We need a minimum of 400
people in attendance to send that message.

3. SHOW THEM A SIGN! Bring a small handheld poster that says "Cover Our
Kids" or "End Autism Insurance Discrimination". Including a picture of
your child on the poster will make your message even stronger.

4. FORWARD THIS ACTION ALERT to everyone you know! As parents, you know
everyone is always saying, "If there is ever anything we can do, let us
know!" So let them know now! Forward this email to your family members,
aunts, uncles, cousins, teachers, therapists, neighbors and co-workers
who live in Virginia and tell them that they can support you in your
efforts to secure autism insurance coverage for your children by coming
to this hearing in Richmond on Monday!

to keep receiving action alerts and updates on the progress of this
initiative in Virginia.

Let's keep the fire marshal busy by packing out the hearing room and
sending a strong, clear message that the discrimination against our
loved ones must come to an end.

For more information on the Virginia autism insurance initiative, go to !

See you in Richmond!

Judith Ursitti
Regional Director of State Advocacy Relations
Autism Speaks

Watch Our President...

Love the house of cards analogy. I can't believe we have to go to January 20th with this guy!

Tuesday, September 23, 2008

Drugs Hint At Potential Reversal Of Autism

From NPR

Drugs Hint At Potential Reversal Of Autism

by Jon Hamilton

Morning Edition, September 23, 2008 · Scientific researchers can spend years in the lab on obscure topics, like how a sea slug remembers or how a fruit fly sees color. But every now and then, a basic scientist makes a discovery that changes human lives.

Mark Bear, who directs the Picower Institute for Learning and Memory at MIT, is one of those basic scientists. He's discovered a system in the brain that could change the lives of thousands of people with the genetic disorder known as Fragile X Syndrome.

Fragile X is a mutation on the X chromosome that can cause mental retardation and autism. Until now, there has been no treatment.

But Bear discovered that the mutation responsible for Fragile X appears to disrupt a system in the brain that regulates synapses — the connections between brain cells. He says the system works a bit like a car.

"You really need both the accelerator and the brake to properly function," Bear says. "In the case of Fragile X, it's like the brakes are missing. So even tapping the accelerator can have the car careening out of control."

Bear and other scientists have also identified several drugs that seem to correct the problem. The drugs don't replace the missing brakes in the brain. Instead, they limit acceleration by reducing the activity of a group of receptors on brain cells known as mGluR5 receptors.

The drugs have reversed most of the effects of Fragile X in mice. They are now being tried in humans. And at least one small study found that a single dose of a drug had an effect.

The implications for people with Fragile X are huge. If the drugs work, people with the disorder could see their IQs rise and their autism diminish.

"It's a dream come true to think that we have the prospect of having gone from really basic science discovery to a potential treatment," Bear says.

Bear's research was funded in part by a group called FRAXA. Katie Clapp and her husband, Michael Tranfaglia, started the group in the early 1990s as a way to help their son Andy, who has Fragile X Syndrome.

Clapp says she now has reason to hope that Andy, who is now 19, can get better.

"We're not expecting a miracle, or to make up for his 19 years of development," she says. "But if we can watch improvement happen, that's a dream."

It's my dream too. As hard as this is, I keep hope that someday there will be a breakthrough that will allow Jimmy to have a more normal life. I have pushed my dreams for him in a place far away, that he goes to college, that he falls in love, that he gives me grandchildren. I have the same dreams that every other mother has for her child. They seem improbable at this point, but not impossible. I believe in miracles.

Monday, September 22, 2008

Reasons to be happy...

Or at least look positively forward to the future...

1. I have a colonoscopy scheduled in three weeks. Most people would not be looking forward to this. I, however, see it as the beginning of resolution to several weeks of stomach pain. For this, I am pleased and grateful.

2. I have my meeting tomorrow at Jimmy's school to get consult back on track and his school year moving forward.

3. Chloe has her vet appointment tomorrow as well. She gets the last of her baby shots. I can also schedule getting her spayed and her front claws out. No, it's not cruel - she is an indoor cat, she will have her rear claws, and it is a whole lot more human than letting my DH drop her back off at the park. She has a bad habit of attacking him and playing rough with the kids.

4. Many of my friends have great things going on for them right now - new babies, new jobs, big moves, great relationships. I am happy to watch them be content and flourish in their lives.


Sunday, September 21, 2008

A great session

Jimmy has a great session today. We took him to IHOP, where he did great coming in and sitting down and getting through a whole meal. When we went to Target, we were met by the behaviorist, who gave us a book that they had put together of movie and game logos to use as a way to diminish the disruption of the video aisle to our trip... and it work brilliantly. We even have a picture schedule for our outing days to work on transitions. I am going to try to get some photos next week of the outing improvements. But I was very pleased. (It also helped that I did NOT take his brother with us!)

Saturday, September 20, 2008

A good article on special needs trusts and estate planning

With a link to an Easter Seals guide on such matters...

Danny's Farm

It's nice when people are able to do things like this...

Gott revolves life around autism
By Michael Schwartz /

ALTADENA, Calif. -- When former Dodgers reliever Jim Gott found out he had a pair of autistic sons, he had a tough time dealing with it at first.

During Family Days at Dodger Stadium, he would watch with envy as his teammates' sons took perfect swings, something his autistic children would never do.

"I was looking for the exact same thing," Gott said. "It was a tough thing to have to kind of reevaluate things and accept them for what they were. It was great, it was a great teaching lesson for me just understanding that my son wasn't going to be the Major League ballplayer that I was or have those aspirations that a lot of the players' kids have at that time."

Now Gott's life revolves around autism, as he and his wife Cathy created "Danny's Farm," a petting zoo and facility for kids from all walks of life with special needs and disabilities. Gott and his wife run the place, but they also bring in special needs counselors to work with the children and host an educational component called "Education Spectrum," which teaches basic social skills.

The farm is named for Gott's 15-year-old son Danny, who has always gravitated toward animals and is the inspiration behind the farm.

Gott understands the difficulties parents of autistic children go through in trying to find suitable extracurricular programs for their kids, who have trouble fitting into normal social situations. For example, Gott remembers not being able to take his now 20-year-old son C.J. and Danny to programs such as "Mommy and Me" and "Jamboree" and having preschools tell him his children's behavior does not fit into their program.

"It's very stressing for a family when you're trying to just find some comfort for your child and a place for them to fit in, so what this is able to do is we've got families that are able to bring their kids for their first experience to be around other animals or first experience to be in a camp setting, in a classroom kind of setting," Gott said.

Special needs adults tend to the petting zoo, which is open for birthday parties, giving them an opportunity to earn a paycheck. The farm is where Danny will get his first work experience when he's old enough to do so.

The petting zoo includes the sights, sounds and smells of roosters, chickens, goats, sheep, pigs, guinea pigs and tortoises, some of which were brought in from distressed situations.

"This is again a place where everyone is safe and loved," Gott said.

"I didn't know Word was part of Microsoft Office!!!"

Only slightly more funny was the man who tried to feed a book through the tray to copy it. Had no idea you opened it and put it face down on the glass.

Another day at the reference desk.

Friday, September 19, 2008

I love the Fair Housing Act

Discrimination against the disabled includes "...(A) a refusal to permit, at the expense of the handicapped person, reasonable modifications of existing premises occupied or to be occupied by such person if such modifications may be necessary to afford such person full enjoyment of the premises...; (B) a refusal to make reasonable accommodations in rules, policies, practices, or services, when such accommodations may be necessary to afford such person equal opportunity to use and enjoy a dwelling;..." 42 USC Section 3604 (f)(3).

I hope this constitutes a ground for appeal for the fence. Jimmy's disability is documented and the running behavior is a manifestation of it. It's not like that wasn't explained in the initial application, but apparently they need it broken down for them.

But wait... there's more...

Fair Housing Act

The Federal Fair Housing Act prohibits discrimination in residential real estate matters on the basis of race, sex, color, religion, national origin, familial status, or handicap. State statutes may add protections on the basis of marital status and sexual orientation. State or local governmental offices will provide associations with information about extensions to fair housing laws.

In 1988, Congress added two new protections that allow disabled individuals to have an equal opportunity to enjoy their dwellings. As a result of this protection, community associations must allow disabled individuals to make reasonable modifications to dwellings or common areas that afford them full enjoyment of the dwelling. The disabled person must pay for the modifications. This federal right to make reasonable modifications supersedes an association's governing documents and design review criteria.

Got my trip to the mall...

Maybe I have turned a corner.  I have my lesson plan book and tons to sort through on the reference desk tomorrow.  And when I get home, I still have a lot to do.  But I am really relieved the week is over and things are going better.

Jimmy is behind me, watching The Batman and hopefully going to sleep soon.  But he is happy... and so am I.

Thursday, September 18, 2008

Yay!!!! The weekend!!!

We have respite care tonight and Jacob's away all weekend with his grandparents.  We will have Jimmy, but I also have a desk shift at Mercer, a housewarming for a friend, and hopefully a little bit of time for housework and a bubble bath.  A mental health weekend, of sorts.  The only thing that would make it better would be a trip to mall!

And... aunt has cancer.   

No black cloud.  It is freaking raining now.

But it isn't raining hard.  They caught my aunt's cancer early.  She should recover nicely with chemo.  And, hey, maybe I have an excuse to go to Vegas in the relatively near future.  She works at a casino and I have learned blackjack - I smell opportunity!  Also, I had a great day at work.  There are a couple of women where I work who have such amazing wit and humor, it can turn the worst mood around.

I shoulder a lot.  I do.  All moms do.  Yet we continue to get out of bed every morning.  I love my life.  I love my family.  I love my work.  I love my friends.  Almost any day, inspite of what I post here sometimes, I will tell you I am one of the most fortunate people I know.  Fortune being different than luck, you know.  When I was in my twenties, I would take to my bed for three weeks when a guy broke up with me.  Seriously - took sick leave, didn't go to work.  When I had a problem, I would ignore it rather than face it.  If I could go back 12 or 13 years, I would slap myself over the sheer stupidity of it all.  Wherever I looked, there were dark clouds and nothing else.  

I have felt like that the past few days too.  Mercifully, I have grown enough to realize two things.  Given time and a little work, things do get better.  Getting to better isn't always easy, but it is a worthy destination.  And those dark clouds more often than not have silver linings and those can be their own gift, a reward for seeing things through, rather than some sort of consolation prize.

A Ray of Sunshine

My sister Becky called me to tell me that eight year old Sarah has her first crush... on an autistic boy who barely speaks, but is apparently very sweet and cute.  I bet he is a good listener too.  Lord knows the women in my family, except notably for my mother, like to talk.  Actually, we can never shut up.  Just ask the men in our lives.

I couldn't help but smile at that.  

Wednesday, September 17, 2008

Why I Get Nervous About Posting

I was looking at my hits and saw that someone from Social Services spent 30 minutes reading my blog today.  In the back of my mind, I always worry about pissing someone off.  I'd be an idiot not to.  But so much of this experience has been about intense levels of frustration and a certain indignity... I hope that this blog falls somewhere below rallying cry and above idle bitching.

Cute picture of Jacob

On his class website... the kid in the gray polo on the swing.

Currently Following Me Around...

I am likely starting to sound like Eeyore, too.  I still haven't gotten any sort of satisfactory resolution to Monday's debacle.  I am still seething about how that all went down.  I have a meeting scheduled next Tuesday regarding FAPT, but before that I have Back to School Night tomorrow night.  A night I usually enjoy, I am actually dreading for fear of confrontation.

The HOA's ARB denied our request for the fence for Jimmy.  We are having to appeal it.  We never got a letter or a phone call - nothing.  I had heard horror stories about the Blooms Crossing HOA and I am depressed to find out that there is likely some truth to them.  If they don't work with us regarding our appeal, do we get a lawyer?  Three of our four neighbors have fences - we aren't trying to build Fort Knox, just a four foot high fence for the backyard so Jimmy can finally run around.  What part of "flight risk" do they not understand?  Ridiculous.  

I miss my friends.  There are so many people I don't see anymore.  T, Amy, E.D., Mel, so many really important people that my situation precludes me from seeing as much as I would like.  Or, like Amy, they move away.  I haven't even seen my mom in a few weeks and she is only an hour away.  

And I am still sick, though Becky may have given me a hint what it could be wrong - she and Jamie were diagnosed with giardia after visiting here.  Usually it is associated with well water, but given that this house was as shut up for months, it is entirely possible that a parasite was living in our pipes or something.  I took samples to the lab this morning and the doctor's office called back and asked me for (I kid you not) six more.  So that's what I need to do in the morning.  

I suppose that these are all small things.  Well, smallish.  Taken together, however, and it just weighs on you.  That's sort of where I am at mentally in this moment.  I know it won't last forever - it never does, but for now, it does suck.

Tuesday, September 16, 2008

T's Suggestion to Lift My Spirits

Love it...


Well, it was a nightmare. It started off badly, when the new case manager showed up late for the meeting. Case manager? What case manager? In 18 months of FAPT, I never had one. To make matters worse, the case manager was a school employee that (at least I feel that) I have been at odds with before. The same one who took over the parent/teacher conference last year. I know it is a conflict, whether it is personality or philosophical, it doesn't matter. I was (and still am) furious.

As I alluded to, it got worse. I was presented with reports on Jimmy's behavior over the last two weeks. Jimmy running into the nearby wooded area, Jimmy running into the school parking lot... Details the school failed to mention to me as the parent until they decided to fight for a one-on-one aide. One-on-one... great, it's needed. But this new case manager did it at the expense of our in-home hours, which had been decreased to three over the summer because of the full day at the summer program. I had to fight just the three more back and maintain consultative services. The new case manager tried to get consult thrown out of school entirely. I reminded them that consult came in to play when it came to light that the school's idea of getting Jimmy to sit and attend was strapping him into a Rifton chair for six hours a day, a violation federal law. In all fairness, consult isn't working how I would like, but that was another thing that failed to be brought up until FAPT yesterday.

I would love to go into more detail about how I feel about all of this, but I really don't think I can. Disgusted, enraged, betrayed fail to begin to touch the tip of the iceberg. I think only the woman from Parks and Recreation was there for Jimmy yesterday, representing what was best for him inside and out of their program. While I am grateful for that, it is pathetic. The people I have come to rely on the most - his teachers and private therapists - all failed him yesterday. I think I failed him too - I tried too hard to polite. I should have questioned this whole case manager thing the minute this woman walked through the door.

Monday, September 15, 2008

Jimmy's FAPT Meeting

I was actually going to post the dictionary definition of "clusterf#(%, but decide that might be a little over the top. I will give you a full post tomorrow, which will be infinitely more interesting with the day after fall out.

If you love me, call or e-mail me. I need a pick me up right now.

Happy Monday!

A beginning of another week. DH can't find his car keys, I have FAPT at 4pm, school board later, and a cat begging for food now. All I would like to do is to go back to bed.

Is it Friday yet?

Saturday, September 13, 2008

Wii, Wii

The family Christmas present will be a Wii - it's from my in-laws. I have started an Amazon list for the birthdays/holidays for my far flung relatives (there is a button on the side bar.) Heavy on the videogames, just because I would like to have a small library to entertain us through the winter months.

Friday, September 12, 2008

How Jimmy Nearly Became an Only Child

Last week, Jacob got irritated at the length of my conversation with his babysitter. While he waited for me to finish, he took a rock to my car and put some fairly deep scratches into the drivers side front and rear doors of my minivan. I was psychotically angry at him for about seventy two hours. Mid week, I scheduled a detail and oil change at my Dodge dealership in Manassas. The detailer thought he could improve on the appearance, but didn't think he would get it scratchless.

The detailer at Manassas Dodge is a freaking miracle worker. It's perfect. Like new. Jacob is deeply grateful to this unnamed detailers who clearly spent an enormous amount on time with a buffer today.

Melting down...

I got a note home from school today - it took two adults and 35 minutes to get Jimmy to participate in a group walk today in gym. Tonight, he melted down when I met my in-laws for dinner at Denny's. It was totally my fault, actually. I forgot Denny's was next to McDonald's. With that oversight, I set us up for failure with lots of crying and repeating "McDonalds, please." I barely ate. He was a mess. My in-laws had never seen him like that and completely taken aback by the episode. I am trying to tell myself that we have good and bad stretches and we are temporarily in a bad one. If that doesn't comfort me, I can find more in that if I am to be stuck at home, it is in a great house with some great carryout places (like Noodles and Company and Ledo's) opening nearby in the next four to six weeks. It's not so bad.


Thursday, September 11, 2008

Who goes to a Jessica Simpson concert?

Maybe they are trying to get her for the next Chucky movie...

Tooth number two is out

Wiggly tooth was lost at extended care today. Jimmy lost his marbles over it, too. He has been working at it for a few days, but apparently pulled it right out. He immediately tried to put it back in. The staff tried to prevent him from doing it, for fear of him swallowing it. He got downright combative and I got the call for an early pick up. Actually, between the time of the call and my arrival, someone got the tooth away, gave him some pretzels, and he forgot all about it. But I am two for two now - I was convinced that I would never see the baby teeth, that he would take them out and leave them somewhere peculiar or he would swallow them for lack of understanding. I have them both!

Because misery loves company...

My sister just called... long story short, she has Graves disease and has to undergo a radioactive iodine treatment to kill her thyroid. She is giving up one of her three jobs - delivering pizza - but it sounds like her husband is picking up the slack and will being driving pizzas so she can stay in school during treatment.

I feel bad for my mom right now. She must be really worried about both of us.

Wednesday, September 10, 2008

Hitting a wall

I apologize for the lack of solid posting the past few days. I think I am falling apart. It's not like things are going badly. Work is fine. My school board responsibilities are pretty manageable, though we aren't in budget season yet. Jacob is happily in school. Jimmy is having a rougher time transitioning back, so much so they are asking for a one-on-one aide. But he is Jimmy, ready to lose another tooth and loveable and hyper as always. I am still unpacking, but the house is still holding together.

But... I don't feel like myself. I am pretty sure I have an ulcer. I went to my doctor, who told me to go to a gastroenterologist. The first office couldn't get me in until late October. I took the appointment, but over the last few days, I realized I need to be seen sooner. Today, I found someone in town who can see me a week from Monday. I honestly wonder if I will make it that long. My stomach wakes me in the middle of the night. It's worse when I eat. It's never really better. I am extremely overtired, stressed out in a way that isn't really in proportion to my current real life, and I am just not there mentally.

Since childbirth, I have made a point of not bitching that much about pain. The way I feel right now is just unreal and I am scared to death. It is likely colitis or an ulcer - I have a history of colitis, but haven't had a problem since my late teens. My grandmother died of colon cancer, though, so I worry about that do. I got an e-mail from my mom, nagging me about getting an appointment. She has just gotten back from a funeral of a longtime friend and colleague who died of colon cancer. My mom is worried too, which is completely unlikely. I never see overt signs for worry from her. Yes, I know it is likely an ulcer, but I am just unnerved by being sick and in pain. I wish I could get into the doctor sooner, because I am really miserable right now.

Sorry I am putting this all out there... I just had to vent. This has got to get better.

To Infinity and Beyond

A autistic boy and his father rescued after 12 hours in the sea, treading water... Amazing.

Saturday, September 06, 2008

Sarah Palin and Special Education Funding

Well, if there is mixed information out there about anything, it is what Sarah Palin has done for special education funding in Alaska. Education Week has her raising funding. CBS fact checked her speech and alledges that she cut funding by 60%. I guess you support either side, depending what stats you looked at. Makes it hard to see the truth, though.

Thursday, September 04, 2008

Monday, September 01, 2008

Tomorrow is day one...

Of a new school year. I still don't feel completely ready - to take Jimmy to school tomorrow, to put Jacob on his first bus on Wednesday, to have students again - but I welcome it. It has been a long and stressful summer. I am hoping for more calm in the fall.

An unwelcome houseguest...

I have two e-friends in the line of fire from Gustav, one in New Orleans and the other in Lafayette. I haven't from Lafayette in a couple of hours - she is home with her hubby and son. She is also midway through her second pregnancy. I was hoping she would leave - even had it arranged for her to stay with my family in Texas - his entire family stayed (I think), so they did as well. My friend in New Orleans still has computer access. He says he is just starting to get the scary stuff, that the ditches are filling in with water and they lost a tree in the yard. They have no power, so I can't figure out how on earth he still has Internet - a laptop with dial up, maybe?

I really hope the damage to New Orleans is minimal. That region has been through quite enough.