Holiday Wind Down

I put my nieces back on the plane this afternoon. A mix of sadness and huge relief. I am glad I have until the 5th before I have to go back to work. I need the time to unwind. But I will miss them. The boys were entertained - I got to go through my bathroom cabinets yesterday. It was nice. I guess I will spend the rest of the week on my bed and getting boxes in from the garage.

I went to the doctor again today - one more test, this one non-invasive. It does require barium, but no fasting, no prep. As long as I can get the lemonade stuff instead of that thick, chalky nasty stuff. That stuff is infinitely worse coming back up as it is going down. And since I can't keep it down... Anyway, unless something radically different comes up in this test, I have irritable bowel syndrome. He gave me a prescription to see if it improves my... um, situation.

Jimmy's asleep, perfect as always. We have stumbled across Dewey Cox on cable. Spend $100 a month on DirecTV and all they have on is crap.

One last holiday gift for you all...

I give you the Star Wars Holiday special...

Merry Christmas

Hope everyone has a wonderful day. Here is the last few days in photos...


The kids decorating cookies...



Jimmy, pre-surgery...



The new swingset, courtesy of their Nana and grandpa...



Jacob at the mall...

I don't believe in dragging Christmas out. It brings out the very best and worst in all of us. So, the tree comes down tomorrow. Onward to the New Year!

Santa has arrived...

Presents are ready and we have an extra gift this year - Chloe has gone into heat. She has been acting weird all day and will not shut up. It just dawned on us what is up with her. Oh joy. As soon as she gives it a rest, we are getting her fixed.

Waiting for Santa...

More like waiting for sleeping children. Once I get the presents out the basement, I am going to go to bed myself.

Katie and Sarah are up from Texas and I had the kids decorating cookies. More than we need for Santa or even ourselves, that's for certain. I will likely drop them by friends tomorrow. Weight Watchers will need to begin again, sooner rather than later. DH is currently trying to explain Santa's visit with the help of a Magna Doodle. Jimmy is doing very well post surgery. I think the whole process is more draining on the parents rather than the child. I get so emotional - Jimmy is just such a fragile gift to me.

Hope Santa arrives at everyone's house safely.

No Inauguration for Jimmy

I had toyed with trying to figure out a way to take the boys since we get the day off. Rope a couple of extra sets of hands and go down. He has an adaptive stroller we use for major outings. Somehow I don't think security will understand the distinction of a stroller needed because of disability. If it doesn't look like a wheelchair, it isn't.

I am quite disappointed, actually. I appreciate the need for security, but the Obama Inaugural Committee has just discriminated against a whole bunch of people - families with small children, kids with disabilities, and elderly people who need chairs. That's unfortunate.

A Much Needed Break...

Last day of school before two glorious weeks off. It's packed full of stuff - I will be far from bored. But.. at least I can wear jeans everyday!

I got a voicemail from my doctor's office about my CT Scan. Enlarged lymph nodes, but nothing else. I guess irritable bowel syndrome it is, though I am not a fan of the diagnosis of exclusion. Should I give up coffee? Red meat? I haven't had a glass of wine in so long, but it wasn't doing me any favors. And I love my cabernets.

At least I can shift my focus back to Jimmy in preparation for ear tube surgery number five on Tuesday.

Returning to my regularly scheduled blog...

I am back... my classes are over until mid-January. I had my CT Scan this morning (no, I still don't know why I have abdominal pain...) I have three days to get through until our holiday break - a break in name only as I will have not only my kids but two my sister's as well. I am looking forward to having time to clean out my minivan and the opportunity to wear jeans everyday.

More of an update tomorrow.

Another form letter...

As your constituent, I am writing to urge you to sign on as a cosponsor of the Disability Savings Act of 2008 (S. 2741). This bill was introduced by Senator Chris Dodd in March 2008.

The Act is designed to encourage individuals with autism (and other disabilities) and their families to save for disability-related expenses. It is meant to supplement rather than to replace benefits provided by other sources (including Medicaid and private insurance). In fact, S. 2741 authorizes specific “Disability Savings Accounts,” which are similar in many respects to existing 529 college savings plans. Provided certain rules are met, Disability Savings Accounts will be exempt from federal taxation.

Currently 1 in 150 children are diagnosed with autism and the financial costs are daunting to most families. This is why these savings accounts are so vitally important. They will help to reduce an unreasonable financial burden for millions of families and make the Internal Revenue Code more fair. Right now, parents can save, tax-free, to send a child to college. S. 2741 will allow parents to save, tax free to meet the life needs of a child with autism.

I urge you to become a cosponsor of the Disability Savings Act of 2008, S. 2741, and help children with autism live full and productive lives for all their years.

I need to pay more attention. I didn't know about the Disability Savings Act of 2008, but legislation like this is desperately needed. We would love the opportunity to save responsibly to help meet Jimmy's potential needs as an adult with a disability. Each boy has a college account that we fund, but funding Jimmy's is bittersweet as we will likely

Maybe we should move to Pennsylvania

NEW YORK, NY (July 9, 2008) -- Autism Speaks today commended Pennsylvania Governor Ed Rendell for signing into law the most comprehensive autism insurance bill in the nation. The new law provides $36,000 a year for Applied Behavior Analysis (ABA) and other necessary treatments, and goes beyond many state insurance reform measures by mandating coverage up to age 21 with no lifetime cap. It also creates, for the first time under Pennsylvania law, an expedited appeals procedure for denied claims as a safeguard to ensure compliance by insurance providers. Private insurers will be required to provide coverage beginning in July 2009.

No lifetime cap... wow! Nice.

Biddy Ball for Dummies...

While Jimmy had a rare Friday session with his therapist in home, I took Jacob to his first Biddy Ball practice. He made a basket... while I was in the bathroom. It was his first attempt at organized sports and his lack of experience showed. Several of the kids had been on the team as four year olds the before. Jacob is barely five. I think we are going to set him up with a basketball to practice dribbling. He didn't get that at all. It will get better. Heck, he improved in the hour we were there.

This is my first competitive sports experience. I don't like this soccer mom thing, or in this case, basketball mom team. I want my baby to be instantly successful, I felt bad when I shooed him back to the group when he kept running over to me in the bleachers, and eying the other team with suspicion. Maybe I am not cut out for this kind of normal. Maybe martial arts would be better...

Uhhhhhhhhhh......

Can I go to bed yet?

With the Ultimate Fighter, Wednesday nights can be long. I am particularly ADD tonight, so I am not paying as much attention to the fights as normal. Jacob is being a major chatterbox and making his father really crazy. And I am really crampy and want to go to bed. It looks like my Christmas gift this year will be a CT scan. I pick up the referral tomorrow. It's the last test before I get labelled as having garden variety Irritable Bowel Syndrome. It's kind of hard to imagine it being IBS given the level of abdominal pain that I have, but with the exception of that polyp, they have not come up with anything else concrete.

I have twelve more days of school before I get a break. I am really looking forward to it. I am exhausted. I need a nap, actually several. And my break doesn't really look that relaxing in my planner right now.

All reports are fabulous regarding the new IA. The teacher is doing a great job of keeping me in the loop. It is so hard to turn your kids over to other people, especially when he can't speak for himself. Maybe he is forever my baby, at least until he has his own voice. I wish I knew what he thought of his day, what he thought of the people who work with him. He never seems adverse to much of anyone, so I can't judge his feelings about others solely based on his behavior. I have to go on faith in those around him and those who are closest to me know that has let me down before - terribly, horribly, even tragically.

Enough... I am useless in this state. I am off to bed.

Forbes article on autism.. Health Needs of Autistic Children Often Unmet

Worth a read...

"Bono -- who currently serves on the board of "Safe Minds," a nonprofit advocacy group in Durham, N.C., focused on childhood neuro-developmental disorders -- explained how thoroughly the needs of an autistic child can alter a family's routine.

"Even if an autistic child is well enough to go to school, schools are often only half a day or so, so many parents choose to stay home so someone is there," she noted. "And many insurance plans won't cover all the things an autistic child needs, because they view the situation as a developmental disorder, not a disease. So, you have to pay huge expenses out of pocket. Otherwise, you just can't get occupational therapy. You can't get speech therapy. You sometimes can't even get basic blood work at your pediatrician. It's a real struggle.""

Who Hoo!!!!

Almost three months after the position was funded, Jimmy has a one-on-aide!!!! :)

Yes, I am still here...

It has been a crazy few weeks. Right now I am just grateful that I have only three weeks of school until the two week winter break.

Not that it is not going to be chocked full of appointments. I am managing to schedule all manner of doctor's visit in before the first of the year. Jimmy will be getting set five of ear tubes two days before Christmas. I feel pretty horrible putting him through surgery right before Santa, but he had two ear infections in five weeks in October/early November. I think having him on antibiotics so frequently is not good for him. So we go forward with round five...

I thought I was going to wind up under the knife as well. I went to a GYN because they found endometrial cells in my last pap (in the continuing quest to figure out where my abdominal pain is coming from) and I am back on birth control pills. He thinks endometriosis is unlikely, but I went mid-cycle and he was shocked at how I described my cycles. So even though my tubes are tied, I am on the pill again to regulate my cycles. He also has me thinking about a uterine ablation, which means that I would never get the monthly again (or if I did, it would be a shadow of its former self.) It is something to think about and I am doing just that... I will likely decide over the next few days. Even though I have no intention of having children again (thus the tubes being tied), the ablation further cements that decision. For a woman, it's pretty major. But I every 21 days, I am completely debilitated for a day or two by this function of nature. Maybe I shouldn't tinker with nature, but in terms of quality of life, getting those days back, even that whole week back where I don't go to the gym or the pool and I avoid really physical things... maybe it is worth it for me, worth it for my kids. But turning your back forever on the whole childbearing thing... It's hard... T, your thoughts would be appreciated!!!

All is going well in autism world, at least in mine. The Virginia bill that would mandate coverage made it out of the commission mid-month and will go a subcommittee and the hopefully the floor of the General Assembly. Just making it out of the commission is HUGE! Also, on November 5th, Barack Obama and Sen. Durbin introduced the Autism Treatment Acceleration Act of 2008, which addresses health insurance (though I am unclear if it just federal policies or what) and other issues related to the research and treatment of autism. The change that was most important for me and my son began the day after Obama's election. That is just huge. Talk about keeping your campaign promises!!!! I know there is some legislative assistant sitting on the Hill who worked his butt of drafting this - to him and his colleagues, I say thank you!!!! Hopefully, this can be passed and fully funded and implemented. You know the minute insurance companies have to pay for treating autism, there will be more money and time invested to finding treatments and cures for kids like Jimmy. Insurance companies would rather find a cure than throw money at kids like my son forever. I truly believe with action, it can happen.

Jimmy also had his first IQ test, to rule out mental retardation. It is sort of a requirement before we get him on the developmental delay waivers list to get additional help for him. They did. The report states that he is at least of average intelligence. IQ tests generally have sections that rely on verbal responses and others that are task driven. Jimmy can't do much with a verbal response, so to get an average score, it means he had to blow away that which required demonstration. I am thrilled with the results. Again, if there is a treatment or a cure that make him less stimmy, more verbal, more normal, have at least an average IQ gives him a place to begin in learning skills and being able to be a contributing member of society.

That's all I have for now. I owe you all some pictures and will try to get them up in the next day or so. Hope everyone had a wonderful Thanksgiving and enjoys the next few weeks as we roll on into the end of the year.

Happy Thanksgiving

The Vomit Comet

I apologize for my lack of posting. I am enrolled in an online class and it is kicking my butt.

There is nothing like starting your morning at the ungodly hour of 1:30 with the realization that your child has joined you. Oh, and the fact you have become privy to that little tidbit because he threw up in the bed next to you. I was up changing the bed, washing Jacob and the sheets. A few minutes later, the drill started again as he anointed the foam Batman couch - I will be replacing that, because there comes a time when you can't wash things anymore and expect them to be okay. It's obviously a stomach bug - he keeps "tooting" and running to the toilet. As long as he doesn't throw up again, I am happy.

Obama's Transition Website

Barack Obama has a transition website at www.change.gov... apparently you can communicate to the incoming administration, so I am going to remind them of the promises of helping families with special needs. That is the change we need...

Love it, T!!!

For T especially, but really all the ladies...

Greeting from the sick ward...

We all have it now. Jimmy has been up and down all day, fairly whiny, and a running nose. Jacob and dh have mild symptoms as well. I have done fairly well all day, but now that the evening is wearing on, I am feeling icky again. I have to write an answer to a discussion class with citations, so it isn't like I don't have stuff to do. But between Jimmy lying on me and my desire to nod off, I am getting very little done. (But, I am still posting, so what does that say?)

For Becky...

My sister is working on a paper and presentation for her undergrad on autism and she needed to know which states actually cover autism specifically (as we are trying to do in Virginia), so here it is...

Sick Day

I am home... I was feeling badly when I got home yesterday, but got a second wind a little while later. I woke up this morning and really tried to get going, but couldn't. After my shower, I called the sub line and hopped back into bed for a little while. After getting the boys to school and checking in at work, I ran out to Walmart to get cold medicine. Now I am sitting in my easy chair, waiting for relief.

Blah...

Wow...

I haven't posted in almost a week. I am back taking a class again, trying to finish off the requirements of my professional credentials. I have also picked up a nasty cold. My voice is fading in and out, always a little worse after the younger kids come to the library. It's been a busy week.

Well, Barack Obama is our next president. I hope that the world will improve a bit. Though we are weathering it well, my dh did get laid off this year. I think the troubles with the economy touch everyone. Jimmy's stuff... well, I am hoping that IDEA doesn't remain an unfunded mandate from the federal government and children like my son get the help they need. I hope that with a leader of vision, this government will start to have a vision for these kids as they grow into adults that will create a place for them in society where they can grow, contribute, and thrive. A government that might truly look into a cause and cure for kids like my son. I hope for all these things and think that we will have a better chance of seeing these things now.

And Obama getting elected isn't even the biggest thing to happen this week... Jimmy is asking to use the bathroom at school. That's almost more miraculous than having someone who isn't a white male elected president!

Worth sharing... Denis Leary Apologizes

I have nothing but admiration and sympathy for the people I know who are raising children with autism. In fact, they were the inspiration for the chapter I wrote about the subject. To them - and to all parents of children with autism - I apologize for any pain the out-of-context quotes from my book may have caused.

I can only imagine how upsetting reading the remarks excerpted from my upcoming book must be for any parent of a child with autism. All I can say is that the quotes from my book that caused so much pain were taken out of context and selectively edited.

It was never my intention to exploit the serious subject of autism. It was my intention to expose the adults in this country who seek to use any available medical avenue to justify their own failures. What I wrote was not directed towards children who have autism.

I do not say in the book - and I have never said - that autism does not exist. In fact, the chapter dealing with autism in my book discusses the struggle of close friends of mine to raise a child with autism.

As I’ve said before, taking one or two sentences out of context is unfair and misleading. Too often in this country, everything gets reduced to simple sound bites and very, very often those sound bites are not truly representative of an author or artist’s point of view.

Another week is over...

It's almost 10 pm and Jacob is tearing around the house, jacked up on sugar. He had a good Halloween. Jimmy hates to trick-o-treat, so it is principally a Jacob holiday. Given that his birthday party is tomorrow, he is pretty much behaving like an overstimulated, insufferable twit at the moment. You can threaten to cancel the birthday, but after you have sent out the invites, momentum is not on your side. Do you really want to be known as the parent who called and cancelled her kid's birthday?

It is amazing when you can look at a calendar and see a two week holiday break coming in the not too distant future. I need it. Except for the part where I will have Jacob the whole time. I wish I could screw up the nerve to give him a lump of coal as an object lesson. My friend Carol tells me that there are good ages and bad ages with kids. Four was a bad age for Jacob. But four was also so three days ago! It's over! I want to wave a wand and say "You are a good boy now!" Why doesn't it work that way?

Happy Birthday Brandon! And Jacob too..

My nephew Brandon, now Big Poppa, had a birthday the day before Jacob's. October always goes by in a blur. Brandon's grown, Jacob's getting there, and I feel old.

Well...

The polyp was an adenoma, which is considered precancerous. It is the same variety that has been removed from my sister. I am now on a three year cycle for colonoscopies. The problem is my side still hurts, so now we look at the ovaries. I have been bad about getting regular paps, so I am nervous yet again. It doesn't end. I guess the good thing is that I have a little pain and nothing else. No nausea, nothing weird with my periods, nothing else... just this pain. But I am anxious... and resolute to take better care of myself after this. I have let things go in all the chaos of taking care of Jimmy - feeling like I can't use a sick day to get to the doctor to get a regular check up for fear of a kid getting sick or Jimmy needing an appointment. I guess I can't afford to be not be here for them. I have a pap and a pelvic ultrasound scheduled next Wednesday. Maybe we can put this to bed then.

Today is Jacob's fifth birthday. I would be more celebratory, but it has been a long, stressful day and the boy is behaving like a heathen.

A Powerful Essay

About why Sarah Palin might not be as good a friend to special needs families as she thinks. I won't vote for her, but I hope the attention that has been given to the needs of families of children with lifelong disabilities doesn't end on November 5th.

HB1588 - was HB83....

Less than a month.

That’s how much time remains until the Virginia Mandated Benefits Commission (MBC) announces its recommendation regarding House Bill1588 at their November 19th meeting.

Once it is passed by the Virginia legislature, HB 1588 will provide up to $36,000 a year in coverage for life-changing treatments, including applied behavior analysis, for our children with autism. But first, the bill must receive a favorable recommendation from the MBC!

Momentum is on our side. In recent weeks, this historic piece of legislation has been reported on by The Washington Post as well as by Dr. Sanjay Gupta on CNN. Even so, HB 1588 will not pass unless you contact the legislative members of the MBC with the following message:

Autism is treatable. Insurance should cover treatment. Virginia families need help now!

HOW CAN YOU HELP?

LIGHT UP THE PHONE LINES! Over the next three weeks, it is crucial that every legislator who sits on the MBC hear this clear message over and over: Autism is treatable. Insurance should cover treatment. Be polite and persistent. Ask them to say “yes” to our children (who so often hear the word “no”) and to HB 1588.

The Commission Members are:

Delegate Clay Athey - (540) 635-2123
Delegate Tim Hugo - (703) 968-4101
Delegate Terry Kilgore - (276) 386-7011
Delegate Donald Merricks - (434) 836-3370
Senator George Barker - (703) 303-1426
Senator A. Donald McEachin - (804) 226-4111

No matter what district you live in, please contact all of these legislators. If you do happen to live in one of their districts, and you can find out if you do right here, call them again tomorrow and next week and the following week. The voices of their constituents are the ones that will most effectively convince them that this is the only solution to this heartbreaking situation. Store their numbers in your cell phones, speed dial if necessary! They must hear from you over and over during the next three weeks.

I still love live music...

The Killers are coming to the Patriot Center January 28th. I have to figure out what day of the week that is. It is very tempting. 2009 will be a year of concerts. Depeche Mode has an album coming out in March and should be touring by summer. Now if the Dixie Chicks would hit the road...

Jimmy is sacked out. I think I am going to join him.

Say hi to your mother for me...

I need to go to bed...

But the UFC is on.

While DH went to Maryland today, I took the boys to the city's Fall Festival. I had to use the stroller, which I hate. I have to when it is just me with both of them. Jimmy needs to be contained to some degree (though there are moments I long to have Jacob contained as well) - it also gives him a place to hide when the environment becomes an assault on the senses. If it is too loud or too bright, he will pull the canopy down and just sort of hang out. Both spent some quality time in the moonbounce and Jacob did every arts and crafts project available. Among them, Jacob discovered the joys of spin art today. He loved it. I tried to get Jimmy to put the sticky foam pieces on the pumpkin. He just wanted to stick them on each other. What was nice is that both boys are so well known to the people at Parks and Rec that they help me out when I am at an event. I actually get to have conversations with adults because someone is entertaining Jacob. It is pretty fabulous. I appreciate the little things - time alone, conversations about something other than birthday parties - so much.

We have session tomorrow morning. DH's parents are coming, so I get to take Jimmy to his outings without the distraction of Jacob. Given that Jacob is still up, I don't think he will even notice me leaving.

Random Pics

For Amy and T...


Jacob's Mii on the Wii


Jimmy's Mii

Mental Health Day

Well, today was supposed to be the day I was going to get my fence. I think today is the day I will set it up, but... I kept the day off because I had a million things to do. I am sitting in the Dodge dealership's service waiting room to get my turn signal fixed. I have a list of ten things to do, all before 4:30. I get so little done on the weekends because of the kids. I never get caught up.

Jimmy is doing pretty well. Jacob's been the battle lately, especially with the bedtime issue. I am spoiled by Jimmy's medication schedule. I have not had to fight the bedtime battle in years with him. Jacob, he just wants to stay up. And I can't parent him via pharmacology - he needs to go to bed earlier and not fight every single time. Because he goes down so late, he is such a pill in the morning.

*Big sigh*

I have too much to do to be waiting here. Please hurry up with my car!!!

T, Click here...

New Duffy song... love it.

Proof..

That...
1. I am a nerd...
2. That I am official old...

All because I got this reference.

Moveon.org needs a little less free time..

I am on Moveon.org's mailing list from the last election cycle. Apparently they are customizing their guilt...




Hey T, want one?

Happy Birthday Grandpa Bob!!!

Happy birthday Daddy!  I can't believe you are 67.

IHOP today...

Though the kitchen was slow (painfully so), our server recognized us as the regulars we are.  I guess all the servers know what Jimmy is there to work on at this point - she commented on the improvement that he has made in getting through meals in the restaurant.  And he has - though he still requests McDonalds, his transitions into IHOP are much better.  Less crying and jumping around while he waits for his food.  

The Target part of the outing is improving as well.  Reduced elopement, no meltdowns over the DVDs.  He started at ten minute visits, stepped up to 15, and now he is headed for 20 minute visits.  No more all over the store, no more running, no more carrying him out when he can't have twelve copies of Basic Instinct because he likes the logo on the box.

Big or small, improvements always improve the quality of his life and mine as well.

CNN article on HB83

I love to see national coverage being given to the insurance issue. It would be such a benefit to Jimmy to have the habilitative services he gets like ABA covered by health insurance. He gets a very minimal amount, but he has made such amazing strides with it.

Parents press for autism insurance coverage

By Val Willingham
CNN Medical Producer

POTOMAC FALLS, Virginia (CNN) -- Parents of children with autism often say it's like being on a roller coaster 24 hours a day. And the ticket for the ride is jaw-droppingly expensive.

The monthly cost of Ethan Nunez's autism therapies is more than his family's income, says his mom, Carol.

A family's lifetime costs for caring for a child with autism can reach as high as $5 million, according to the Autism Society of America. Each month, parents report they pay thousands of dollars for treatment and therapy. And in most cases, insurance, even good insurance, won't cover all of the fees.

Many families are triple-mortgaging their homes, taking second and third jobs, even living with other family members, just so they can provide the care their children so desperately need. Some even have to choose between their child's development and keeping their homes.

For Carol and Rick Nunez of Potomac Falls, Virginia, the stack of bills piled up on the dining room table is a brutal reminder of their reality. The Nunezes, parents of two boys, were introduced to autism when their younger son, Ethan, was found to have the condition two years ago.

In order to provide the best care, Carol Nunez went to work full time and Rick Nunez stayed at home, providing 24-7 watch over Ethan. Although she has a good job in sales, the bills still amount to more than the family's monthly income. Costs for Ethan's applied behavior analysis, a relatively new therapy that has passionate advocates as well as critics, can run up to thousands of dollars a week, not including the cost for speech therapy, his medications and special schooling.

Carol admits it's tough. "It's been extremely expensive," she said. "Between ABA therapy, the accommodations we had to make to the house, the special material we have to give him, it just adds up."

But there is hope. A bill being considered by Virginia's General Assembly would require insurance companies to cover medical costs to treat autism. Just last month, Ethan, along with his parents and other Virginia families with autistic children traveled to Richmond, Virginia, to testify in favor of House Bill 83. The testimony was emotional, with parents, at times pleading from the podium for more financial relief.

Casandra Oldham, who has two children with autism, told legislators her family's money is so tight that many times she and her husband have to decide which child gets care first.

"Do I help both children?" she asked. "Or do I help the one that needs it the most? Help the one that will go the furthest? It's gut-wrenching."

Over the past few years, parents across the country have pushed states including Pennsylvania and South Carolina to pass mandates similar to the one being considered in Virginia. Virginia's bill would put a cap of $36,000 per child per year. Other states have capped care at $50,000. But the insurance industry warns these mandates could lead to higher premiums.

"We oppose the idea of mandates in general because we think in the end what happens is that health care is less affordable and less accessible when mandates are imposed," said Susan Pisano, spokeswoman for America's Health Insurance plans.

But many parents of children with autism say it's time to stand up for their kids. They want the insurance industry to realize that autism is a medical issue that requires a large range of expensive treatments in order to assimilate their children into mainstream life and many believe paying higher insurance rates is worth it.

The key service mandated in the Virginia bill and in many of the bills already passed across the country is applied behavior analysis. ABA uses educational techniques to change certain antisocial behaviors in autistic kids. By working with these children on a one-on-one, daily basis, therapists can increase children's skills in language, play and social interaction. They can also help them get over behavior that interferes with learning. Much of the therapy is repetitive in nature, which is why sessions need to be ongoing, without interruption.

But it's controversial. Some health plans consider it experimental or say it is not medically necessary. But many experts say that ABA does show promise, especially in children whose autism was diagnosed at an early age. According to the Kennedy Krieger Institute in Baltimore, Maryland, a highly respected autism research and treatment center, studies have shown 60 percent of high-functioning children can lose their diagnosis of autism by age 8 by using ABA.

ABA is intense, requiring 40 hours of therapy a week. which can cost up to $50,000 a year. Some therapists support it, but others don't. Yet parents say they should be able to give their children any treatment they feel works and not be socked with astronomical medical bills.

For now it's a wait and see for the Nunezes and other Virginia families. Even though the bill has backing from the House and now the Senate, the General Assembly doesn't convene until January.

Till then, the bills on the Nunez dining room table will continue to pile up. It's a pile they know they won't be able to turn their back on.

Blah

Had a nice afternoon on the reference desk.  When I wasn't answering patron questions, I caught up on my claims for the flexible spending account, bills, coupons, etc...  Mundane stuff is nearly impossible to do at home.  I have called five times to check on them - Jimmy ate half a large pizza.  He never pounds food like that.  Maybe he is hitting a growth spurt.  The only thing I really failed to do was to catch up on my e-mailing... to Amy and T, principally.  I miss them both a lot.  One lives an hour away and the other is now in Wyoming and I see each about the same amount - never.  I really need to work on that...

*Sigh* 

Jimmy update...

He is asleep on the couch.  He is doing fairly way... it's sort of up and down with him.  He will have a good day and then the next, he is slapping people.  He will be happy then will be screaming and hitting himself.  I wish I understood why he is the way he is.  It's like he has no impulse control.  Children grow into that as they get older.  Maybe Jimmy never will.  

The moments where he is sweet and sedate vastly outnumber those where he is coming unglued and the world is falling apart.  I think the problem is when things become undone, it increasingly becomes overwhelming.  He is bigger, stronger, more emotional, more combative.  It is harder for us, harder for Jacob especially.  When he was singing earlier he got worried that Jimmy couldn't stop singing, that he kept singing the same thing over and over, that he could not get Jimmy to sing a whole song with him.  He rather sad, actually.

Jimmy still has no one-on-one aide.  It's been a month since FAPT.  60 days from now we go back and I am beginning to think that we may not have a one-on-one, save those few days a few weeks back.  I am sort of glad that we don't have more in-home.  Yes, another three hours would help, but it is so constricting to our schedules.  I don't think I would balance any more successfully.  I have already signed Jacob up for Biddy Ball and will likely be signing him up for swim lessons tomorrow while I am over at Mason in Manassas.   He is entitled to have his own interests too.  He also has his own therapy, though his is only 45 minutes a week (as opposed to the hours on end his brother's behavioral therapy takes up.)

It's all venting though.  Jimmy is sleeping next to me right now on the sofa.  He is truly the sweetest, most beautiful boy ever.  

The weekend...

One desk shift at Mercer (I miss GMU) on Saturday and the UFC that night.  Sunday brings another three hours of therapy for Jimmy and a lot of laundry in the afternoon.  Should be a decent weekend.  

Jimmy is singing to himself on the couch, so I am going to go join him.

Okay, don't call Denis Leary, just e-mail him...

This was posted as a comment as response to offering up his foundation's phone number.

"I'm the Operations Manager at the Leary Firefighters Foundation and I also am appalled by Denis idiot remarks. I appreciate that you want him to hear your comments, but calling the office isn't the best way-- I've encouraged all callers to go to our website or email directly to info@learyfirefighters.org and I am printing up all the emails and giving them to his assistant. The phone call will only get to me and I'm with you on this-- please email so Denis will see your comments and not have to hear them second hand. Thanks for posting this, and i'm sorry we even have to go there!!"

Thanks for the response, Mardi. I will be sending an e-mail. I am inviting Denis Leary over to babysit for a couple of hours. If he takes me up, maybe him explain the whole Bill Hicks thing to us as well.

OMG!!!! They are talking autism in tonight's debate!!!

Validation for those of us who have the 1 in 150 children afflicted with this disability!!!  Even a brief mention...

I am noting that McCain mentioned it too, but I still dispute the validity of Sarah Palin as an advocate for special needs families.  But I am thrilled McCain brought it up and that Obama shared his ideas too.  

Oooh, I hope that someone puts this on YouTube.

Denis Leary's Press Release

He is complaining about the world being reduced to soundbites when he calls his chapter "Autism Schmautism." What did Leary think would come from a title like that? I'll read the book if I see it in the library. Forgive me I don't run out to buy and a copy and line his pockets in support of his seemingly hateful comments.

"The people who are criticizing the "Autism Schmautism" chapter in my new book "Why We Suck: A Feel Good Guide to Staying Fat, Loud, Lazy and Stupid" clearly have not read it.
Or if they have, they missed the sections I thought made my feelings about autism very clear: that I not only support the current rational approaches to the diagnoses and treatment of real autism but have witnessed it firsthand while watching very dear old friends raise a functioning autistic child.

The point of the chapter is not that autism doesn't exist -- it obviously does -- and I have nothing but admiration and respect for parents dealing with the issue, including the ones I know.
The bulk of the chapter deals with grown men who are either self- diagnosing themselves with low-level offshoots of the disease or wishing they could as a way to explain their failed careers and troublesome progeny.

Of course, this entire misunderstanding can be easily avoided simply by doing one thing -- reading the book.

Taking one or two sentences out of context -- especially when it involves an entire chapter devoted to the subject -- is unfair and ill-advised.

Too often in this country, everything gets reduced to simple sound bites and very very often those sound bites are not truly representative of an author or artist's point of view.

Please give me the benefit of the doubt by reading all of what I wrote before attacking me."

If you are concerned by Denis Leary's comments...

Call his Leary Firefighters Foundation at (212) 343-0240.  Denis Leary probably won't change his mind, but I am going to still call and see if I can invite him to come and babysit.  Probably would enlighten him a bit.

Denis Leary Slams Autism as a Joke

Pretty much on par for what I expect from Denis Leary, who has stolen all of his best material from the late Bill Hicks.

"DENIS Leary should brace himself for hate mail from the parents of kids diagnosed with autism.

In his new book, "Why We Suck: A Feel-Good Guide to Staying Fat, Loud, Lazy and Stupid," the joke-slinging "Rescue Me" star writes about the brain disorder:

"There is a huge boom in autism right now because inattentive mothers and competitive dads want an explanation for why their dumb-ass kids can't compete academically, so they throw money into the happy laps of shrinks . . . to get back diagnoses that help explain away the deficiencies of their junior morons. I don't give a [bleep] what these crackerjack whack jobs tell you - yer kid is NOT autistic. He's just stupid. Or lazy. Or both."

The Autism Society of America responded: "For Mr. Leary to suggest that families or doctors conspire to falsely diagnose autism is ridiculous . . . [His] remarks reflect the same misconceptions of autism being caused by bad or unemotional parenting that were held over 50 years ago.""

I Survived...

I am alive. I came out of sedation okay, just a little teary. I was jolted back to consciousness when I heard the word polyp. I don't know if they were talking about it or I asked about their findings in my haze, but that was the word I sort of feared. In the past two years, they have found six precancerous polyps in my younger sister in two separate exams. My last exam was clean, so I really was hoping I was going to dodge the bullet of genetics and find an ulcer or something.

That was not to be. I am extremely sore because they took quite a few biopsies to continue to look for the source of my discomfort, more likely related to something in the lining of my colon like microbial colitis or irritable bowel syndrome. They will also attempt to determine if Miss Pretty Polyp is malignant or benign. So instead of answers, I get another two weeks to wait.

Intellectually, I understand statistics are in my favor regarding whether what they find is cancer, even with my family history. Emotionally, it's a hell of thing to wait on. I am Mrs. Worse Case Scenario and a tad bit of a Drama Queen. In my mind, the worst thing they could have found today was a polyp. They did. It sucks.

Still up... part 2

Yup, still going... um, strong.  I am supposed to get up in an hour and a half to start to get the kids ready.   :(

Oh, and Jimmy is up now too.  

Still up...

Everyone else is asleep but me.  I am expecting I will have to take the last dose of medication.  I am hungry, tired, and bloated.  If they can't tell me tomorrow what is wrong with me as a result of this test, I am going to be really upset.  Unrealistic expectation... perhaps.  I am just cranky right now.

This is not fun...

The really sad thing is even if they find nothing, I have to go back every few years for the rest of my life for colonoscopies because my grandmother had colon cancer.  Then again, it is better than cancer. 

Jimmy is being a little angel through my (relatively mild) suffering.  Jacob is attempting to ensure that he gets no birthday party.  And my mom is here - she will be attempting to hook me on Dancing With the Stars this evening.

I am heading out the door...

To get Depends at my mother's request.  For me.  For tomorrow.  

Fun.

Two days and counting...

I get my colonoscopy in two days - Wednesday! My stomach was killing me today. I move and my abdomin hurts.  It is pretty miserable.  I want to leave with whatever is bothering my stomach removed and a nice prescription after all this.

That drama notwithstanding... wait, the drama never ends around here.  At least the boys are laughing at the moment - Yin Yang Yo is on.

Weekly Update

I have been really behind with a good many things in life, but I need to update - our fence did finally get approved. I am still thinking about pursuing the HUD complaint simply because the interpretation of the Fair Housing Act that the CAI uses (the big management association) states that requests like ours fall outside the typical HOA/ARB processes since the need was to accommodate a disability. I am going to press on to ensure that no family with a pressing need has to jump through those hoops in Blooms Crossing ever again.

We had a decent Sunday outing. My mother-in-law came along - last minute arrival so the guys could work on the basement. Jimmy did fairly well at IHOP and actually walked away from the DVDs at Target without going nuclear. My day is over all too quickly, as I am off to bed. But I have a little midweek break - the prep for these things is always worse than the actual exam, so Tuesdays going to suck. Hopefully I will be able to enjoy a nice late breakfast Wednesday morning!

More later...

Me and Urijah

Not the greatest pic of me, but far from the worst. I am actually leaning in because he is a little shorter than me, it's hot, blah, blah, blah. But it's a pic. And Urijah was such a sweetheart!

It's late...

The event was a lot of fun. Live MMA is an amazing rush. I have the benefit of getting better seats than most people (sitting there with my laptop and posting away), but it is a nice break to get out. Of course, therapy will come early tomorrow for Jimmy. But it does every Sunday.

Speaking of Jimmy... I looked over tonight and saw our video camera. I never considered posting videos of some of his quirkier behavior, but I think that I will begin to play around with it. Would be kind of fun, I think...

Where in the world is Rachel tonight?

Cage side at the Patriot Center, doing a play-by-play for DH's website. Already met Carlos Condit and Urijah Faber, fairly well known fighters in the world of MMA. I always feel a little guilty leaving home, but I needed to get out. :)

Getting by...

It has been a long week. Jimmy has recovered from his ear infection. Jacob has a girlfriend (DH teasing him about it prompted the "wrong daddy" comment), though he certainly doesn't want to admit. She sent home artwork with him this weekend from school. Jacob used an entire roll of scotch tape to put in on the wall. Of course, Jimmy tore it down. Ugliness ensued.

My colonoscopy is next week, which is a huge relief. A friend point out that I have been waiting awhile for this. I certainly have. The pain has been worse the past few days, so I am hopeful that this will be diagnosed and treated this week. I don't want to wait much more - I am pretty miserable.

In the good column, I caught up on my sleep last night - I was out by 8:30. I am covering an MMA event tonight at the Patriot Center with DH and another friend from Ocean City. It should be fun - and Uriah Faber will be there. A great fighter, but also very cute. Makes me feel like a dirty old woman!

War Cougars!

"You Picked the Wrong Daddy, Mommy!"

What Jacob now says when he gets in trouble with his dad...

I love Betty White...

Worth the click...

What up, T?

In a mood...

I am just pissy right now, so much so I can't think straight.

The Bailout

What a waste... If $700 billion went to researching autism, we would likely have a cause, a cure, and a ton of money left over fix other real problems, instead of lining the pockets of millionaires.

And Obama voted for this... Then again, McCain did too.

Switching My Vote..

Thanks T!

Recovery?

This is the kind of crap you deal with when you are one of the others in the world of autism. We have made attempts at biomedical interventions with no results for Jimmy. I am not a believer in the vaccine theory - I have my own, but that's not one. But those are the camps... recovery, vaccine, then there is everyone else. I have tried to get into a DAN doctor, but can't afford to do it without insurance coverage. I have long been under the impression that the local support group is some hybrid of those two campus - I have never been because it is too painful. People telling me that Jimmy could recover if we have him drink rice milk and live wheat free. And when that doesn't work, we just weren't doing it right? Chelation? Hyperbaric chambers? Barbara isn't 100% right, but Jenny McCarthy isn't either. Jenny is fortunate - her son is better, she isn't having her husband suggesting that her son might need to be institutionalized at some point in the future, that he is too much to handle. There is so much support for those who believe in vaccines or recovery. What about those who are just muddling through? Are we bad parents? Are we not doing enough? Are we failing our kids?

Barbara Walters MD? Tells Jenny McCarthy Autism Not Reversible.
Ba-ba Wa-wa Don’t Know Nada.

So, there you have it, right there on The View: Barbara Walters says autism is not reversible and that Jenny McCarthy is giving false hope.

Meanwhile, Jenny McCarthy is sitting at the table, the mother of a recovered son. Off camera and back stage, Stan Kurtz is watching Barbara’s preposterous statement on an in-studio feed, mouth agape, himself the father of a recovered son.

And so it goes for thousands of parents around the country with recovered and recovering children.

Barbara, where exactly do you get your information to make such a sweeping statement? Is it OK to be 100% wrong about something and act like you are right?

If you’d like Barbara to hear your perspective, please write her and The View. From a TACA action alert:
WHAT DOYOU NEED TO DO? Your help needed is a quick email to Barbara Walters at the View. Jenny needs our help.

WHO SHOULD EMAIL?: Anyone who has a child affected by autism and has either:
a) benefited from biomedical treatment GREATLY (the definition of
greatly is up to you, the parent)
b) or HAS a recovered child
WHY?: The View folks think Jenny's message is an anomaly. Recovery is not
possible. Biomedical intervention does not work.

If you disagree with this opinion – we need your help. It is urgent.

The View main web site:
http://abc.go.com/daytime/theview/index
Ask the View:
http://abc.go.com/daytime/theview/ask

PLEASE address your message to BARBARA WALTERS
PLEASE DO NOT HOLD BACK YOUR EMOTION. PLEASE SPEAK FROM THE HEART. It is imperative that family's stories are heard from those affected.

It is time to share information about your child and tell your story.

Your help is needed today. Right now. Please take the time if you
qualify for the WHO SHOULD EMAIL.

I needed a giggle...

A classic...

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.

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.

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.)

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!

HOW CAN YOU HELP?

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!

5. SIGN UP TO HELP on www.autismvotes.org
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
www.autismvotes.org/virginia !

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!

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.

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.

:)

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!)

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 / MLB.com

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.

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.

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...

...my 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.  

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.

T's Suggestion to Lift My Spirits

Love it...

FAPT

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.

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?

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.

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.

Right?

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.

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.

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.

Funny Stuff

John Stewart at his best...

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.

One of my favorite places in the world..

French Quarter residents discuss Gustav

I hope it fares better than last time...

Barack Obama: Supporting Americans with Autism Spectrum Disorders

"BARACK OBAMA: SUPPORTING AMERICANS WITH AUTISM SPECTRUM DISORDERS

More than one million Americans have Autism Spectrum Disorders (ASD), a complex condition that impacts communication, socialization, and behavior. And more cases of ASD are being recognized across the country at an alarming pace. Barack Obama believes that we must do more to help support Americans with ASD, their families, and their communities. Throughout his career, Barack Obama has worked with families affected by ASD to raise awareness and to provide support to parents and families living with ASD. As president, Obama will build on these many years of advocacy and ensure that his administration prioritizes ASD research, public awareness, and lifelong support services. Obama will seek to increase federal ASD funding for research, treatment, screenings, public awareness, and support services to $1 billion annually by the end of his first term
in office. Obama will also continue to work with parents, physicians, providers, researchers, and schools to create opportunities and effective solutions for people with ASD.

Record of Leadership on ASD Research and Care: As an Illinois state senator, Barack Obama sponsored legislation that became law to create an ASD diagnosis education program, an initiative designed to promote the implementation of evidence-based practices. The goal of the project is to offer educational opportunities at all
levels of care, including physicians, early intervention (EI) specialists, psychologists, teachers, day care providers, parents, respite workers, and speech and language therapists. Obama has personally worked side-byside with Illinois families affected by ASD to support efforts to build the Therapeutic School and Center for Autism Research. This school and research center will bring together education, academic research, early intervention programs, and training to prepare its students for independent living.

In the U.S. Senate, Obama is a cosponsor of a measure that would expand federal funding for life-long services for people with ASD, authorizing approximately $350 million in new federal funding for key programs related to treatments, interventions and services for both children and adults with ASD.

Appoint Federal ASD Coordinator to Oversee All Federal ASD Efforts: Barack Obama will ensure all federal ASD activities occur in an efficient manner that prioritizes both research and supports for families
affected by ASD. Obama will appoint a Federal ASD Coordinator to oversee federal ASD research and federal efforts to improve awareness of ASD and improve the training of medical professionals to identify and treat ASD. By establishing one top-level point person to coordinate ASD efforts in the White House, Obama will ensure that ASD receives the recognition and priority it deserves in the federal government. The Federal ASD Coordinator will also be tasked with eliminating bureaucratic obstacles that may be delaying implementation of important ASD measures and ensuring that all federal ASD dollars are being spent in a manner that prioritizes results. The Coordinator will work with state task forces on ASD to ensure effective communication and
collaboration among federal, state, and local agencies.

Fully Fund the Combating Autism Act and Federal Autism Research Initiatives: Barack Obama supported the Combating Autism Act of 2006, which was signed into law in December 2006. The Combating Autism Act authorizes increased federal funding for ASD research and efforts to boost public awareness and early diagnosis
of ASD. Since the bill has been enacted, however, federal funding for ASD has not increased to the levels authorized by the Combating Autism Act. As a U.S. Senator, Obama has worked to fully fund the Combating Autism Act and as president, he will ensure that his administration addresses the growing impact of ASD and other special needs on American families. President Obama will fully fund the Combating Autism Act, which provides nearly $1 billion in autism-related funding over 5 years, and work with Congress, parents and ASD experts to determine how to further improve federal and state programs.

Support Special Needs Education for Children with ASD: Barack Obama understands that children with special needs – students with visual, hearing, physical, sensory, and mental impairments – require meaningful resources to succeed both inside and outside the classroom. Obama is a strong supporter of the Individuals with
Disabilities Education Act (IDEA) and supports full federal funding of the law to truly ensure that no child is left behind. The current underfunding of IDEA causes school districts throughout the country to deny necessary services to students with ASD and other special needs. Obama will also work to change IDEA’s definition of “autism” to Autism Spectrum Disorders to ensure that all children diagnosed with ASD disorders receive the support they need.

Support Universal Screening: While roughly 90 percent of infants in the United States are currently screened for various potentially disabling or life-threatening conditions, fewer than half the states screen all infants for the full recommended panel of 29 disorders. Many of these conditions, if caught early, can be treated before
they result in permanent impairments or even death. Barack Obama believes we should screen all infants, and also that we must set a national goal to provide re-screening for all two-year-olds, the age at which some conditions, including ASD, begin to appear. These screenings will be safe and secure, and available for every American that wants them. Part of Obama's early childhood intervention plan will be directed at coordinating fragmented community programs to help provide all children access to screening for disabilities as infants and again as two-year olds. Achieving universal screening is essential so that disabilities can be identified early enough for those children and families to get the special supports and resources they need.

Work Together: As part of his commitment to open the doors of our government to the American people, Barack Obama is committed to facilitating open dialogue among Americans with special needs and their
families, federal and state agencies, regional centers, resource centers, research institutions, school districts, first responders, and community members."