Tuesday, June 30, 2009

Happiest in the water...

So I got a call from extended care, saying that the couldn't find Jimmy's swimsuit and they were headed for the pool in five minutes. Since it was just about the lunch hour, I ran home, found his suit, and met the van over at the pool. My plan was to chaperone these trips throughout the summer, so I could have some quality time with him while he interacted with his friends. Plus, I am nervous having him somewhere like that without me. But I knew a trip to the pool would thrill him, so I got him changed in the bathroom with Ms. W and went back to work.

When I went to pick him up at 4, his van was pulling up. He was the first group to go over, but part of the last one to return. He was having such a good time that no one wanted to bring him back. I am glad they were so thoughtful and he had such a good day.

The Senate is bringing funny back...



I like it when smart people make it to elected office, but to get funny as well is a great thing. Congrats to Al Franken... Senator Franken.

Monday, June 29, 2009

Miss Lightbulb's First Day of the Rest of Her Life

Sounds like Miss Lightbulb, Jimmy's beloved teacher, had a good first day at her new job. I am thrilled. Jimmy has asked for her everyday since school has ended, but I think of all of the good she has done for us and all of the good she will do for those suffering from Spina Bifida. She is one of the greatest people I know.

Jimmy saw his speech therapist today and she sent me a note, saying he clung to her. I get it. He misses the structure of school, so seeing her was probably overwhelming. He goes back for summer school starting Monday, so he will be happy camper again. But he will miss his Lightbulb.

I am tired. I have only one more day to got before I get about six weeks off. I need the break.

Mark Warner Should Support the Autism Treatment Acceleration Act

I got an e-mail from Friends of Mark Warner today, touting an op-ed piece that he wrote about legislation he introduced to support families like his who are caring for a parent facing Alzheimers.

"That's why I have introduced the Senior Navigation and Planning Act of 2009 (S.1263). At its heart, this bill helps Medicare beneficiaries, their families, and caregivers to plan for their transition into senior life in non-crisis moments. Essentially, we are trying to help seniors, their families, and caregivers navigate through a complex health care system."

The op-ed is really well written and it is clear that families caring for the elders with Alzheimers are facing many of the same issues that families with autism deal with - the help navigating the healthcare system, adequate coverage and care, respite, and care training. This is a worthy bill and I support it 100%.

My frustration is this - I have called his office twice about the Autism Treatment Acceleration Act and its need of co-sponsors. The interns/staffers who have answered have seemed uninterested at best. I sent a more lengthy request through his website over a month ago (my memory), asking him to please sponsor the ATAA and to give me a response. I have yet to hear from his office. To my knowledge, he also has not signed on to sponsor the ATAA.

I hope in the fullness of time he will reconsider and support the ATAA with same enthusiasm that he is supporting S. 1263. Granted, Alzheimers has touched his family more closely, but with 1 in 150 children diagnosed with autism, I doubt Mark Warner (or Jim Webb or Frank Wolf) would have to look very far in his circle of family or friends to find someone whose life has been touched by autism.

Saturday, June 27, 2009

Michael Jackson

As a kid, I was a Michael Jackson fan.  Who wasn't?  Sadly, the years were not kind to him in many ways.  But there is a part of me that will forever be a fan.  I am saddened at his loss, if for no other reason that the impact he had on people like the inmates of Cebu Prison, who have found inspiration in his music to do something positive in the unlikeliest of places.  I give you their tribute.

I hope Michael Jackson finds the peace that eluded him in this life.


Tuesday, June 23, 2009

Why won't my legislators in DC support the Autism Treatment Acceleration Act?

If you live in Virginia, please call them and ask...  I am thinking it is time for Jimmy and I to pay another visit to the Hill.  

Sen. Jim Webb
Phone: (202) 224-4024

Sen. Mark Warner
Phone: (202) 224-2023

Rep. Frank Wolf
Phone: (202) 225-5136

Monday, June 22, 2009

An Interesting Ruling...

"School districts "can avoid any liability for tuition reimbursement by providing a free appropriate public education to a child with a disability," said lawyer David Salmons, who argued the case for T.A. But "if they fail to do that, they may be responsible for private school tuition if the parents can show that it's an appropriate case.""

Saturday, June 20, 2009

I Love Covers

School's out for the summer...

Well, the year is done. Completely for the boys, mostly for me. I have seven workdays left, but I can wear jeans, so it's all good. The simple things make me the happiest. I have roughly six weeks off, where I hope to get the garage capable of housing one car, more of our stuff unpacked, the wallpaper border up on the boys' walls, find the Wii Play disc, exercise, and just get stuff done. I need the time.

Jimmy has summer school, extended care, and therapy. Jacob has camp, soccer, and swimming lessons. I don't know what I have, but I hope for a little peace.

Sunday, June 14, 2009

I will figure out the edit feature later...

video

From my backyard.  Jimmy's in the moon bounce, Jacob and Noah on the playset.  It was a good time.  Watching this will cause motion sickness.  I need to learn to edit properly.  A summer project, I am sure!

A Quick Post...

This past week was crazy... lots on the scheduled, killed the iPhone, had a going away party for Jimmy's teacher, and tonight is No Doubt with bestie T. Will catch everyone up later...

Tuesday, June 09, 2009

Congratulations Creigh Deeds

... On winning the Democratic primary. I have faith that you will work on the waiver situation, but I really want to hear you use the word mandate in relation to insuring autism. Intervention and treatment improves outcomes, keeps families whole, and creates taxpaying, productive autistic adults. Autism speaks. And we vote too. Mandating insurance coverage is the key to my vote in November. It simply must happen for my son, his classmates, and all autistic children in Virginia.

Monday, June 08, 2009

Primary Redux - My Vote

So I just got my response from Moran's camp regarding the insurance...

What raised the question was my conversation with Creigh Deeds.  Let me start by saying that I am a political novice.  I know that the key to many points is in the phrasing.  And since I don't speak the political language, it is only with thought after the fact that I realized the importance of this point.  

Mr. Deeds is a man who cares about people and does have a lot of sympathy into the plight of families like mine, having a child with a medical diagnosis and therapeutic needs that are not covered by insurance.  He wants to have more availability to the waivers program to help us keep our children in our homes, loved by their families.  When it comes to the insurance issue, he said the market would take care of it.  

Only in time, did I understand what that might mean.  No mandate.  The Post article said: 

"It's just right that it be covered," Deeds was quoted as saying.

He is absolutely right.  It is is the right thing to do.  If you are waiting for insurance companies to do the right thing, you will be waiting a LONG time.  With them, it's the bottom line.  Their bottom line.  Not worrying about the cost of lifetime care or institutionalization shouldered by the taxpayers and families.  

This was the response from Moran's camp when I raised that point:

"On the private insurers mandate for autism, the private market will definitely not take care of it. If the market were to work with regards to this issue, it would have done so already. There is a market failure here because, the private insurers don't want to cover any more than they have to and they have a very powerful lobby.  Brian believes that we are morally obligated to help families like yours and that is why he is committed to the private mandate. I hope that this email has answered your questions and that we can earn your vote tomorrow!"

With that, I think he just did.  

I appreciate what I have learned in quizzing these campaigns.  I am not going to be disappointed with whoever goes forward tomorrow.  I find it sort of ironic that the one I didn't personally speak with is getting my primary vote.  Moran's main policy piece addresses my issue in the way I would like to see this state go forward.  This staffer who I have been exchanging with (never sure who wants their name on a blog, so I am not mentioning it) is just so knowledgeable.  I hope to God he is going to Richmond with him.  

But yes, tomorrow I am voting for Brian Moran, with the hopes that he will go forward to improve the lives of all Virginians.  Including those who are living with autism.

Brian Moran's autism policy

I got an e-mail from Moran's campaign, directing me to his Healthy Virginia plan.  It does discuss mandating coverage and eliminating the waivers waitlist, two big points for me.  To get to that, you really need to download the .pdf Plan, but it is worth reading.

Will nail down my vote in a few hours.  Might even post the hows and whys.


Sunday, June 07, 2009

Week in a nutshell...

My first Mike-less FAPT is tomorrow.  Oh, they'll be a post about that, I'm sure.  Tuesday I don't have anything scheduled yet.  Wednesday it is the summer Extended Care meeting and the final staff meeting on Thursday.  Nothing Friday - except getting ready for Miss Harris' going away party on Saturday!!!

Nothing going on this week.

(Oh, Tuesday I have to go vote in the primary - so now I have something then as well!!)

Saturday, June 06, 2009

A Couple of Big Days...

Yesterday, I took Jimmy to Fredericksburg for his DD Waivers interview.  I have a few things to do, but he should be on the waiting list shortly - and I found out about a separate waiver that will provide some interim support.  The woman who did the evaluation was probably one of the nicest and most knowledgeable state people that I have encountered in my travels.  An absolute pleasure.  Even though our wait will be years long, I am relieved to finally be on the list to get Jimmy and my family more help.

Today, Jimmy and I had the pleasure of going to one of Creigh Deeds' last campaign stops before Tuesday's primary.  DH gave him $25 the other day, the first campaign contribution that he has made in about 15 years.  He really feels that his ability to represent that part of Virginia that isn't Northern/DC area well will serve Democrats better in November than the other two candidates.  Moreover, he really is still bitter about that eight years of Bush, his thinking being that under other DNC leadership, Gore would have won.  I am not sure that is a fair assertion, but I understand his frustration.  I however digress...

I like Deeds' message about making government work for people.  I also appreciate his love of Twitter.  After the article ran in the Post and my comments on my blog, I got this tweet from him...

your son, and others with autism, are not an afterthought to me now; nor will they be when I'm Gov. Everyone must be included

Capitalization and punctuation don't count on Twitter, but I appreciate the sentiment.  I am fairly certain he is getting my vote on Tuesday.  Now to figure out the other primary races.  Incidentally, my neighbor Jeanette Rishell is running again for House of Delegates.  I met her new campaign staff, two young women named Kendall and Alana.  Great girls and it will be great to see them around this year... I think they will do a better job than the last guys, though the incumbent is a great guy who co-sponsored the autism bill earlier this year.  He will be tough to beat.

Tomorrow, we are back to 9am therapy with Krislyn.  Oh my gosh, it's early.  I think we are going to do an outing to IHOP.  They'll be pleased to see us - the management of that store has been very supportive of our outings and it has been quite a while.

Wednesday, June 03, 2009

Autism Votes: The Virginia Primaries

I got mentioned in the Post... an article about autism and Virginia primaries.  I spoke the reporter for about 40 minutes and only had two paragraphs.  When he contacted me, I sent him the great letter that Terry McAuliffe sent me as well the text of my Twitter exchange with Creigh Deeds.  The article points out that Brian Moran has included the coverage issue in his Healthy Virginia plan.  So now I have go read that.  But I am pleased that the journalist decided to address this as part of the primary coverage.  1 in a 150 kids and shrinking by the day.  We need to be heard, for the sake of our children, both those with autism and those without, who will have a fiscal responsibility for this generation of kids for the rest of their lives.  

I was really surprised that this one point that I made with reporter didn't make the article - the next governor of Virginia should have a vision of the future that includes my son.  That's what I told Mr. Kunkle.  What I meant... In health care, in schools, in the workforce, his future is as important as other children, as the needs of our seniors, and anyone in between.  The man I vote for won't have Jimmy as an afterthought or expense, but as Virginian.

Tuesday, June 02, 2009

Dumbest Idea Ever...

I read an article online about American Airlines cashless cabin initiative, where you have to use a debit or credit card to buy snacks or headsets in the cabins.  My nieces fly unaccompanied all the time, so this concerns me greatly.  At 9 and 14, they don't have any card, yet I can't give them cash to make a purchase in the cabin.  I e-mailed American, which send me this response.

June 2, 2009

Dear Ms. Kirkland:

Thank you for your comment about our cashless cabin initiative.

We certainly understand that many young children do not carry a credit or debit card|We also understand that parents and guardians know what their children like to eat. We have always encouraged parents and guardians to pack food items from home they know their children will enjoy. Additionally, we do provide an escort pass so that you may accompany your child to their departure gate. This provides an opportunity for you to purchase food items that can be carried onboard as well. Please know however, our flight attendants have the discretion to provide our unaccompanied minors with a complimentary snack on flights where we offer food for purchase if they do not have their own. Additionally, soft drinks, juice and water are always complimentary.

Sincerely,

(Redacted because who really wants to find this when they Google themselves)
Customer Relations
American Airlines




This response concerns me. They only seem vaguely interested in accommodating unaccompanied children. They basically say pack a snack at home, buy something at the airport, or if the overworked, underpaid flight attendant who has just been harassed by the drunk who has consumed one too many Bloody Marys has an ounce of kindness left in her, she might just give the kids something. Insane. If you pack something for the kid, more than likely the will consume before they get on the plane. Hell, they don't let you take drinks past security. Hello? Even buying something in the airport, how many times does a kid get hungry by looking at the next guy's food. There's an idea... teach your kids to beg their fellow travelers to use their debit card for them. A pleasant flight for all involved right there.

The assumption is that if you have a plane ticket, you must have a credit or debit card. How classist of them! I know the cards simplify things in the cabin, but cash should be an option. I really hope the other airlines DO NOT follow suit.

Monday, June 01, 2009

Autism Hurts... especially when Jimmy has been jumping on your foot!

Share photos on twitter with Twitpic

Jimmy has broken DH's foot. More specifically, several smaller bones a few weeks ago. He was in full tantrum and jump a little too often and hard. The foot has been painful for a few weeks, but he finally made it in to the doctor today (for unrelated swelling in the other foot - go figure!) So he is in a boot for four to six weeks and I am more responsible for the physical management of the kids for the time being. It means DH isn't likely to accompany us to the pool or anywhere else for a while and I am on my own.

Thank God there is only 14 more days school. My ability to multitask effectively is waning.