Special Needs Toys Website

An FYI for anyone who is interested... a lot of this is more than Jimmy would need, but it is a great resource.

Crazy week

Long weekends throw me off. I am overtired and have a lot of work to do at home. I have started exercising again because the physical demands of raising two boys is going to require me to lose some weight. I keep injuring myself (twisting an ankle, straining my back) since I am in such poor shape. I walked Monday and today and did Yoga yesterday. I have afternoon appointments the next two days, so I am going to try to get in to work earlier so I can walk before school. I might even get around to rejoining the gym.

Jimmy is using the bathroom at school and at daycare. Home hasn't been a problem in a while. Number two is the problem - that usually results in the only accidents. But it is amazing progress. His therapist has great success in getting him to speak. It is rougher going at home. And I am taking him to the doctor on Friday - we have a hunch that he might have a yeast imbalance, but I am unsure how to check it - I have a little research to do before then. I also finally put together Jimmy's wish list. I have a few art things, but to those friends who were asking - it's here via Amazon.com.

Hey, do any of my local readers know when they are doing the General Assembly Legislative Townhall meetings in Manassas Park?

I Love You!

After five years and four months of life, my son finally told us that he loves us. We were decorating the tree last night and Jimmy was having the best time. He kept running back and forth, putting all his ornaments in the same spot - when his back was turned, I moved them. But he was so happy. He ran over to his father, gave him a kiss, and kind of haltingly said "I love you!" I about fell over. I was so shocked about what he had done that I missed him saying it to me! No matter - it was a thrill. Not anything I don't know, but it was so wonderful to hear him say the words!

The tree is done and the shopping is mostly done. Money is always a concern (especially with going to Texas), but these boys don't need much either. I am just pleased that I have two amazing kids! Jimmy has made so much progress this year and Jacob is developing normally. As much work as that is, he is still amazing. His new thing is "Cars" - he has been bugging me for the movie for two weeks and I finally got it for him. We are twenty minutes into it and he is beside himself. He is dancing naked to Rascal Flatts - why, oh why does he not like clothes?

Have a great week!

Jimmy's Black Friday

Jimmy and I dropped Jacob off early and headed out to the mall. We couldn't get potty success out of him - I think he is afraid of the high powered flush. But we did visit Santa and he wasn't as squirmy. We actually got a picture with Santa - unfortunately I had to sit and be in it to get it to happen, but we did it. He was much better with him than he was on Sunday. Maybe it was a better Santa. I don't know. But it is a great picture, even with my overly shine face in it. If I can scan it, I will.

I think I am going to create another book list for the boys. They don't really need any more toys for the holidays (unless someone is willing to come put them together) and I have bought Jimmy art supplies - Crayola coloring set was an early bird special at Toys R Us this morning. I'll see if Amazon will let me post a link here.

You Can Dress Them Up...

...but you can't take them anywhere.

We went to my in-laws for Thanksgiving. It was pretty good. Jimmy actually started saying "sad" on the way up. Turns out it was his way of telling us he had to go to the bathroom - the whole "Dry pants happy/Wet pants sad" thing. He managed not to have an accident though.

When we got there, things went pretty well. Jimmy was not interested in joining us at the dinner table, but Jacob did. Jacob also manage to strip naked and run through the house before I managed to get him cornered and clothed again. I also crashed out on the couch for an hour, a rare occassion since I had extra hands to help.

After my in-laws, we went to my stepdad's sister's home for dessert. It was nice to see everyone again, even so soon after the funeral. They are lovely people. But it was pursuit mode of both boys, with my mom, husband, and I rotating. Potty success, a nice visit, but it ended with a very overstimulated Jacob pulling the towel rod off the wall in the half bath. I was suitably mortified and apologetic. She was lovely as always, but I am still embarrassed.

I have said it before - Jimmy may be autistic, but my normal kid is just killing me.

Tomorrow, I am banishing Jacob to daycare and taking Jimmy with me to meet my mom at the mall for shopping. We are going to practice toileting and walking while holding hands. I don't think it will be that crazy - I am looking forward to a day with just him.

He has autism. Like me?

So, yesterday at the post-graveside reception, I met a young man with autism. He is the cousin of my stepfather. I have know about him, but had not had the opportunity to meet him until yesterday. What a great opportunity that was!

He is 22, an apprenticed piano tuner and lives at home. But he was nice, polite, sweet, and happy. I could converse with him - his interested were sort of restricted in the same ways Jimmy's are, had the stimming behavior, likes to draw, and loves his recently married sister.

I kept kind of gravitating towards him, observing him in conversation or thought. Late in the afternoon, I sat down in the chair next to him. With a room full of family there, we started talking about my boys. I got around to Jimmy - we talked about their common interests and eventually I got to the fact that he doesn't talk. He asked me why. I said it was because he had a disability. He asked what kind. I told him that Jimmy had autism. His whole face lit up. "He has autism. Like me?" He was excited.

Until yesterday, aside from watching an interview with J-Mac, I could not put an adult face on autism that wasn't from the film "Rainman." I see that part of my life with a little more clarity - not that Jimmy will be exactly like him, but I now have an idea of what he could be. Of course, I would love for him to be like everyone else. But if he is like my stepdad's cousin, it's okay.

Goodnight

The last task of a very long day. I was off work today to go the Eloise's service. It was lovely. I spent the afternoon with one of my stepfather's cousins. He is in his early twenties and is autistic. What I saw in him gives me such hope. I lured him into conversation and told him about Jimmy - he gave me the greatest smile when he said "He's autistic like me." I will post the whole story tomorrow afternoon when I leave work. It was amazing.

Jimmy's Magna Doodle Art

Autism Makes the Cover of Newsweek

Again... although, this time it focuses on older children with autism. I often wonder what the future holds. It even discusses the role of siblings, especially with the eventual death of the parents. Sometimes, even though I really don't want and couldn't handle a third child, I think about it so someone will be there to help Jacob. It hardly seems fair what his future holds if Jimmy can't function on his own.

Right now, Jimmy is lying in the floor, stimming with a black puppy from McDonalds, barking.

Eloise

My stepfather's mother Eloise passed away last night. My stepfather and my stepgrandmother really came into my life too late to play either role, but both people mean a great deal to me. Eloise was wonderful to my mother and wonderful to me. Although not wholly unexpected, I am deeply saddened at her loss. I wish my mom didn't have to go through this again, losing a parent, even if it is a mother-in-law. I feel very sad for my stepfather and his siblings - the sense of loss was palpable in his voice today.

I was blessed to have known her, although too briefly and never well enough. Thank you for treating me with such kindness, warmth, and generosity of spirit. Rest in peace.

Daycare issues, again

Yes, there was a post here. I took it down. I decided I want to give things a chance to be resolved. Jimmy is fine as is Jacob. I just hope that things improve in my daycare center soon.

Another Virginia Bill

Oh please say it will pass this year... oh please, oh please, oh please!!!

I read through it - it's Delegate Ken Plum. I love that man - he never wavers in his support for kids like mine.

Today's quote

"Dry pants happy, wet pants sad."

He said it this morning while waiting for the bus.

Six times!!!!

He peed at school SIX times today. He left in the same underwear he went to school in. Of course he pooped at Childtime, but it is still amazing.

Stewart/Colbert in 2008

This would be a great ticket...




Be sure to pick up this week's Rolling Stone. These two are nightly genius and a needed laugh at the end of the day.

Looking ahead to the 110th Congress

From the ASA newsletter...

Election 2006: Implications for Autism

ASA's Efforts to Pass Combating Autism Act Continue

Election Day 2006 brought a round of changes at all levels of government, as Democrats won control of the House of Representatives and possibly the U.S. Senate (AP and CNN are reporting today that James Webb has won the VA Senate seat), 28 Governor's mansions, full control of 23 state legislatures and partial control of 10 state legislatures. This Democratic wave has broad implications for many health issues, including autism, as Democrats have made health care a centerpiece of their agenda. In the early days of the 110th Congress, the Congress will likely consider legislation related to the reimportation of prescription drugs from Canada, allowing the federal government to negotiate for lower drug costs and efforts to fill the Medicare Part D doughnut hole. With regard to autism, Democrats may try to increase funding for biomedical research, public health programs and education programs.

That said, Democrats will be challenged to translate campaign promises into legislative realities. Despite Democratic victories in the House, the margins to enact legislation are very thin. Furthermore, Senate rules requiring a 60 vote majority for most legislative initiatives ensure that health care reforms will have to be bipartisan measures. While it is difficult to predict the direct impact this will have on autism, ASA will be sure to work with members of Congress on both sides of the aisle to continue to build support for autism related issues.

For a comprehensive analysis of the election and its outcomes, go to: http://www.sonnenschein.com/docs/2006electioninsight.pdf

Combating Autism Act

Despite the sweeping changes in the House of Representatives and the Senate, including the defeat of Combating Autism Act author Senator Rick Santorum, ASA continues its efforts to enact this critical legislation this year. Thanks to the outpouring of support from autism advocates all over the country, Chairman Barton has approached the autism community to identify a possible compromise on this important legislation. While negotiations are still underway, ASA is hopeful that they will yield a compromise that can be passed during the lame-duck session. ASA is working with Chairman Barton's office and other leaders in the autism community to ensure that a comprehensive, strong and effective bill is enacted. As more information about this potential compromise becomes available, we will be sure to notify ASA's members and supporters.

Media Coverage: Stalled Autism Bill Highlights Funding Rift

By Jeannie Kever, Houston Chronicle

In labs across the country, the increasingly vocal demands for more research into the causes and treatment of autism have been a good thing.

"People are convinced it's an important problem to work on," said Dr. Arthur Beaudet, a geneticist at Baylor College of Medicine. "You see it on the covers of magazines and on your TV screens. It's increasing the funding."
To read the entire article, in which ASA's Ennvironmental Health Advisory Board Co-chair Dr. Martha Herbert and ASA Director of Chapters and Membership Jeff Sell are quoted, go to: http://www.chron.com/disp/story.mpl/front/4307489.html

ASA Promotes Passage of Lifespan Respite Care Act

Important Legislation to Provide Temporary Relief for Caregivers

As previously reported, the Lifespan Respite Care Act of 2005 was passed by the House Energy and Commerce Committee and needs to be moved to the House floor for a member vote. This bill would amend the Public Health Service Act to authorize the Secretary of Health and Human Services to award grants to develop respite care programs at the state or local level and to evaluate the effectiveness of such care. The bill defines "respite care" to mean planned or emergency care provided to a child or adult with a special need in order to provide temporary relief to the family caregiver. The bill would also establish the National Resource Center on Lifespan Respite Care to: 1) maintain a national database on lifespan respite care; 2) provide training and technical assistance to state, community, and nonprofit respite care programs; and 3) provide information, referral, and educational programs to the public on lifespan respite care.

Research on families of minor and adult children with disabilities, including autism, indicates that one of the most sought after services is respite care. It allows caregivers to take a break from their caregiving duties to attend to sibling needs, the health of their marriage, and to themselves. ASA supports the Lifespan Respite Care Act and encourages families of individuals with autism to actively promote its passage with their Senators and Representatives. Press on the links to see a sample letter to the editor, a list of the bills’ cosponsors, and state-by-state numbers of family caregivers and the dollar amount of uncompensated care they provide released by the National Family Caregivers Association.

ASA Urges Increased Funding for Social Security Administration

Services for Those with Autism Affected

ASA signed on to a Consortium for Citizens with Disabilities (CCD) letter to William H. Frist (R-TN), Majority Leader, Harry Reid (D-NV), Minority Leader, Thad Cochran (R-MS), Chairman of the Senate Committee on Appropriations, and Robert Byrd (D-WV), Ranking Minority Member, requesting that the Senate provide at least the President’s budget request of $9.494 billion for the Social Security Administration’s (SSA) Limitation on Administrative Expenses (LAE) and that the Senate remove SSA’s LAE from the discretionary budget caps. SSA’s funding level of $9.093 billion, included in the Senate Committee Report of the FY 2007 Labor, Health and Human Services, and Education, and Related Agencies Appropriations bill, is $401 million less than the President’s request. This cut would exacerbate reductions in fiscal year 2006 when SSA’s budget was $294 million less than requested by the President for that year. If the $401 million cut for FY 2007 is passed, Commissioner Jo Anne Barnhart has indicated that SSA will need to take a number of significant actions including:

Closing of local SSA offices nationwide
Increasing serious delays for individuals
Reducing the number of continuing disability reviews (CDRs)

Services to individuals with autism and other disabilities would be hampered by such actions. The letter urged the Senate to appropriate the additional $401 million and to remove SSA’s budget authority from discretionary spending caps.

Call John Dingell

(202) 225-3641

This is the number for the Democratic side of the House Energy and Commerce Committee - Congressman John Dingell from Michigan is likely to be its new chair in January. Ask for their help in getting the Combating Autism Act of 2006 out of Joe Barton's hands and on the floor for a full vote!

I owe you guys a lengthy, Jimmy filled post and you will get one. Tomorrow.

Jimmy Update

It's early and I have to run to the shower, but Jimmy - the boy who keeps us up nights - has been sleeping through them for the past two. He is downstairs watching Zaboomofoo, giggling at that lemur. It's nice to see him happy and alert in the morning. Potty is still hit or miss, but we are all still trying.

Autism and the GOP - Why Many Parents are Fed Up... by David Kirby

Today is a very happy day. Joe Barton will soon no longer be the chair of any committee. A beautiful thing. The only thing that would have been better was if he had lost his seat entirely... Below is a insightful piece of what parents find themselves up against in Washington. My son's condition informed my vote and will continue to do so.



"Autism currently ravages 1-in-166 American children, meaning that 1-in-83 parents are also affected. Many of them, it's safe to say, will not be voting Republican.

Over the past six years, as the GOP wielded near total control over Washington, the autism parents I know have felt as welcome at the table as, say, Cindy Sheehan.

Thousands of moms and dads are convinced that environmental toxins - and mercury in particular -- played a pivotal role in their children's illness. But this idea has been very unpopular in George Bush's Washington.

Why? Just follow the money -- and follow the mercury.

Big Energy and Big Pharma are two of the GOP's most reliable cash cows. They also happen to be responsible for most of the mercury that ends up in our kids. And though the autism-mercury link has yet to be proven, Republican leaders really, really want the issue to just go away.

But those pesky parents won't let them. On Election Day, many of these highly motivated voters will repay the GOP for what they say has been six years of hostile indifference, at best.

After all, it was GOP leaders who inserted a secret rider into the Homeland Security Bill to dismiss lawsuits against companies that use mercury in vaccines. It was Bush Administration lawyers who tried to seal the records on all government data pertaining to the controversy, while also devising clever new ways to gut EPA regulations on mercury emissions from coal-fired power plants. And George Bush himself utterly reneged on his reelection campaign vow that all mercury should be removed from childhood vaccines ASAP (something to remember when getting little Johnny's flu shot this year).

Then came the Combating Autism Act, a sweeping (and long overdue) bill that made its painstaking way through the US Senate earlier this year. Careful consensus was crafted among all major autism groups to help create a nearly $1 billion bill which, among other things, would direct at least $45 million into NIH research on potential environmental causes of autism.

To his credit, Republican Senator Rick Santorum introduced the bill and worked to get it passed, but only with enormous pressure by autism parents and heavy hitters like Bob and Suzanne Wright of Autism Speaks, and environmental activist Deirdre Imus, (who was stunned to see a blubbering Bill Frist begging for deliverance from her relentless radio host husband, rather than worrying about the kids).

The bill passed unanimously in the Senate, only to get bottled up in the House, in the Committee on Energy and Commerce chaired by Rep. Joe Barton, of Texas. Barton had a bill of his own, to reform the way NIH gets and distributes research money. His bill passed the House, but is going nowhere in the Senate. Meanwhile, Barton refuses to let the autism bill out of his committee, despite the fact that it would pass overwhelmingly in the full House. Barton says he doesn't like "single-disease" funding bills, and promises to address autism in a new compromise version of his NIH legislation.

Barton says he is not opposed to funding for environmental autism research, but many parents can be excused for their skepticism: Among his top political contributors are electric utilities and pharmaceutical companies. A lot of money, a lot of mercury.

Barton may resubmit his bill - even if he is a lame duck Chairman - after Election Day. But it's a safe bet that his version won't contain any specific funding into environmental causes of autism. In the meantime, he is excoriated almost daily by Don Imus, whose colorful adjectives to describe the Chairman are gleefully repeated on autism blogs nationwide.

And now, at least 1-in-83 voters will have autism on their mind when heading to the polls. They will wonder why the Combating Autism Act has seemingly died in the House, and why leaders like Speaker Denny Hastert have done little, if anything, to save it.

I know many Republican parents who will be voting Democratic this year. It's not that the opposition party presents any great alternative. But, like with most Americans and Iraq, these fed up voters feel like any change will be a change for the better."

Election Day

Well, I got 8 get out the vote calls on Saturday and 4 on Sunday. There were some yesterday, but I just picked up the phone and hung up quickly when it came across my caller ID. I am hoping tomorrow morning finds Joe Barton out of the House leadership. That would put a smile on my face for days. If you want to help children with autism, you might want to consider voting Democratic today. I think the people in Texas are foolish enough to vote him to another term, so really the only way to run him out of his chairmanship is to flip the balance of power. Part of me hopes we don't lose my member of Congress in the process - Congressman Frank Wolf and his staff have been very good to Jimmy and I on this issue - but Barton really needs to be removed from the leadership today.

On the Senate side, I am glad to be getting rid of these ugly commercials. Man, I don't like either guy all that much, based on what's been said.

And a special shout out to my favorite local reporter this morning - go get some Starbucks and get going. Something tells me you and your colleagues are going to have a busy day.

Vote!!!!

(More tonight - it's parent/teacher conference day...)

Weekend update

Not enough house work done. I am recovering from a sinus infection and the post-nasal drip is making me cough. Jimmy continues to potty training. He has been halfway successful in pooping in the toilet. Suffices to say, you don't want me to define that any further. Jacob, on the other hand, is going through this willful regression where he is peeing everywhere but where he is supposed to. He is making me crazy.

Should be a great week. The election and Veteran's Day leaves me with three days of classes, one work day, and Friday off. I take the boys to the doctor Friday morning, but they are going to daycare in the afternoon. I am determined to have it to myself.

Cleaned out the cell phone

Jimmy playing at the park during the Manassas Park Fall Festival...



Jake on the swings the same day...



Jake playing tent in our papasan chair....



And one from the summer - Jake's love of Coldstone Creamery knows no bounds.

Run Down

My allergies are in full effect. My peak flow is too low. I am headed for the doctor in the morning and will likely spend the rest of the day on the couch. I wish I could sleep now. I will be coughing too hard to get much rest. I am waiting to meet my new doctor tomorrow to get some blessed antibiotics. Then life can return to normal.

No successes today in the toileting department, but he is in a really good mood. He hasn't had an accident since he got home either. I think he will likely use the potty here before he heads for bed. Right now, he is happily watching "Blue's Clues." He is such a giggle monster.

A Few Words...

When I first heard this statement, it was attributed to Nelson Mandela, a man who greatness inspires an almost spiritual affection in me. I later heard that the original author was Marianne Williamson. I still imagine Mr. Mandela saying them though.

Why I am posting them? Because I have two people in my life right now who make me think of them - the first is my son, obviously, but the second is another mother, a reader of this blog, and someone who I would love to call a friend in time. She inspires a lot of people in our community. You know who you are, even if you would never admit it publicly. Thank you for your quiet support, as an advocate, a mother, and a mentor.

Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness, that most frightens us. We ask ourselves, who am I to be brilliant, gorgeous, talented, and fabulous? Actually, who are you not to be? You are a child of God. Your playing small doesn't serve the world. There's nothing enlightened about shrinking so that other people won't feel insecure around you. We are all meant to shine, as children do. We are born to make manifest the glory of God that is within us. It's not just in some of us, it's in everyone. And as we let our own light shine, we unconsciously give other people permission to do the same. As we are liberated from our own fear, our presence automatically liberates others.

The Photo and More Success

Yes, they had a good time. Jimmy continued a successful run of potty with two productive trips today at school.