Thursday, October 30, 2008

Stayin' Alive

The title says it all...We are sickos, have been for three + weeks. It began with Benny - LOL - everything begins with our boy, doesn't it?! Ugh...His annual seven month hack has returned. But, because of this, a three year mystery has been solved....Benny is not just a really baaaaaaaaaad sleeper! He has aggressive night terrors, coupled by nocturnal "seizure-like"activity. Frew.....When he is sick, his sleep problems are frequent and intensified. The good news is now we know how to help him, and us, to get through it. He will grow out of it.

The hack continues. He coughs so hard he vomits. Put night terrors (where we're not supposed to wake him up) with a violent cough and it spells:
HELL
But that's just the brink of it.

Then mommy breaks out in hives, and is rushed to the ER for a magic shot. Cause unknown.

A few days later, add a fever to Benny's cough.

The following night Desty breaks out in hives and visits the ER. Cause unknown.

The next day, Desty appeared fine. Just before 7p.m. my baby girl collapsed into her daddy's arms and had a seizure for five + minutes, and forty minute recovery. As the medics were prepping to take Desty to the ER, Benny was barfing all over the neighbor. Dustin went in the ambulance; I chased behind in my wheelchair. The ER chalked it up to a febrile seizure and released her. Since then, her fever has been on and off, she now has a bad cough, and now we are all sickos.

Finally, a nurse practitioner listened to us yesterday and now both kids are on antibiotics, and Desty has a referral to a neurologist, because, in her opinion, Desty's seizure lasted too long to be a typical febrile seizure. In my opinion, Benny has needed a neuro for a long time....Think Benny could be passed off as Desty's conjoined twin? no, probably not!

While all of this was happening, we discovered a poisonous plant, Mertle Spurge, all over our yard.

It has been wild at the Burton house! Desty's 3rd birthday celebration has been posponed until we are up to partying. Hopefully, we will be able to enjoy Halloween.

We are going to have the cleanest carpets, as we invested in our own Carpet Shampooer, just in case something is being tracked in.

And last but not least, we are investing in a lifestyle change:

GOODBYE HARSH CHEMICALS, HELLO NATURAL PRODUCTS!

It's not a big deal; i.e. the baby bath and bubbles are heavenly soft, the oatmeal soap is glorious and we looooooove Mari, my dear friend, and Mari's Magic butter salve. We will work on the food when they make a natural Dr. Pepper that tastes like the real thing! ;-)

The Bee Gees come to mind of late.........

Wednesday, October 15, 2008

The Many Colors of the Colorado Rockets

INTRODUCING...
...a great opportunity to support a DYNOMITE new team, an inspirational and aspiring artist, and to get a headstart on your Christmas shopping for as little as $20.00! It couldn't be simpler!

PURCHASE Kane's ARTWORK to support POWER SOCCER in COLORADO! Kane, a local artist and Colorado Rockets player, is generously donating 100% of all art sales for the next 30 or so days to the Colorado Rockets. Order an 8 X 10 print or a box of cards from the web (mention POWER SOCCER in Comments during check-out) or order directly from me.

If you purchase directly from me, it will be discounted...

My prices (shipping donated by myself):
A package of ten cards is $30 (on the web $40 + shipping)
8 X 10 print is $20 (on the web $25 + shipping)

If every one of my readers were to buy one 8 X 10, the Rockets would make $2,100!

5...4...3...2...1...

BLAST-OFF!!! GO ROCKETS!!!

Thursday, October 9, 2008

We Looooooove Sunflower Preschool

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Where's Benny?!

In the YELLOW and BLACK jacket in front of the trailer!

Today was Benny's first field-trip - EVER! Sunflower Preschool went to Munson's Farm for a fun-filled morning of hay rides, pumpkin picking and a picnic. While we did not volunteer as a driver, we were not gonna miss out. AND though Desty couldn't go on the hay ride, she did get the wildest mommy ride of her life as we followed behind it!

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LOL Benny started at Sunflower Preschool in August and I do believe --> 'tiz the PERFECT fit! Benny is having so much fuuuuun and learning and growing, and he loves all his teachers, too. The curriculum never ceases to amaze me! The teachers are great with Benny, and all communicate very well with me, which is definitely key. Benny does struggle - he's quite the 'Big Boss Man' at Sunflower - but the teachers deal with it appropriately and continue to nurture him and seem to really enjoy him. And frequent reports confirm that he's improving in the bossy pants area.

My Facebook update reads: Tammy LOOOOVES Sunflower Preschool and is fighting urges to poo bomb Benny's old nazi preschool.

LOLOL Sorry, I am mad that it seems we get what we pay for in education. Even if Benny actually had a great teacher last year, the difference between a public school environment versus private is disgusting. Vote major school reform! Kids are worth it!

I'm just sooooooo...
RELIEVED
RELIEVED
RELIEVED

to have found Sunflower!

:-) Tonight at dinner, Benny said, "Mom and Dad, remember when we went to the cemetary in Washington DC? When can we go back and see the dead people again?"

Monday, October 6, 2008

SSI 'Marriage Penalty'

Generally I steer clear of news stories on here, but this is more than a news story. I want all of my friends, family and supporters to know what the government/the system has been doing to people with disabilities. No, the ADA was not the cure-all that many people think. YES! - WE ARE STILL OPPRESSED!!! Until people with disabilities can marry and still earn money to support themselves, while keeping vital Medicaid, the goverment is dissing marriage and the family. The government is, in fact, contributing to poverty in America.

This is not just a news story, this is my reality, our reality. We were discouraged from getting married because of the disincentives you will read about below. We would be much better off financially if we were to divorce -- atleast then we could earn enough to provide for ourselves. I have seen people do this. A spouse becomes disabled, but cannot qualify for assistance because the non-disabled spouse has some kind of income, or they have even a couple thousand in savings. The medical costs are astronomical - and first priority obviously. They have no choice but to divorce! A family breaks...and this couple will probably end up living a lie, or out of fear, completely sever ties. And if they have children...... "Honey, we love each other but mommy and daddy can't live together" just doesn't cut it.

Sorry, I am a bit conservative here.......this is a crime and our system/the government is the villian. The system needs to support SUCCESS, FAMILIES and MARRIAGE, not OPPRESSION, LIES and BROKEN HOMES.

All my life, I've been told this one issue is too big to change, it's not gonna change in my lifetime. (except the brief time I lived in MT!)

Today I thank Montana for taking the issue into their own hands and forging on to conquer the SSI Mariage Penalty!

THANK YOU FOR FIGHTING FOR ALL!!

Readers, please read the brief story and the detailed press release below...

Missoula, MT--- In a packed room, with U.S. Senate Finance Committee staff linked in by phone, Montana People First members and others offered personal testimony about the pain and suffering caused by the SSI "marriage penalty." Following the testimony, they presented over 2500 petition signatures they had collected from citizens all over Montana to a local staff member of Sen. Max Baucus, who chairs the Senate Finance Committee. In addition to the monetary penalty suffered by SSI recipients who marry, those presenting testimony cited additional penalties such as;

* Not being able to openly celebrate their love and commitment to one another in the company of friends and family
* Not being able to inherit one another's estates as a spouse
* Not being able to get information when their partner is in the hospital
* Not being able to make end of life decisions for their partner when necessary
* Not being able to make funeral arrangements for their partner
* Not being able to live openly as husband and wife
Montana People First members hope that their efforts will inspire others around the country to join them in asking their Senators and Representatives to take legal action to remove the marriage penalty from the SSI program. More information is available below in the Media Advisory issued on Thursday by Disability Rights Montana, which is supporting the Montana People First Senate in the campaign to end the SSI marriage penalty.
Rocky Hughes, President of Montana People First, hands Holly Luck, local staff of Sen. Max Baucus, a book containing over 2500 signatures gathered by People First members all over Montana to request removal of the SSI 'Marriage Penalty'.


FOR IMMEDIATE RELEASE: September 26, 2008
Media Advisory
Contact: Raylynn Lauderdale, Disability Rights Montana, (406) 449-2344
E-mail: raylynn@disabilityrightsmt.org

Montana Couples with Disabilities Take on SSI Marriage Penalty

Who: People First of Montana

What: Present personal testimony on the SSI “Marriage Penalty,” and a petition with 2500 signatures to Montana’s Congressional delegation. The testimony and petition ask for Congress to change SSI policies that discriminate against people with disabilities who marry, and that punish them for celebrating marriage and family values.

Where: Jorgenson’s Inn & Suites, 1714 11th Ave, Helena, Montana – large downstairs meeting room

When: 3 p.m., Friday, September 26, 2008

Why: Many people with disabilities live on a $637/month federal SSI benefit, an amount that is about 75% of the poverty level. When two unmarried SSI recipients live in the same household and share expenses, each continues to receive a full $637/month SSI benefit. However, when two people with disabilities of the opposite sex marry, and one or both receive SSI, their combined benefit as a couple ($956/month) is reduced to 75% of the total of their two individual benefits($637/mo + $637/mo = $1274/month)

As a result, SSI recipients with disabilities who wish to marry like their typical peers, in accordance with social convention and/or their faith, hesitate to do so, or choose not to marry at all rather than risk the loss of precious dollars needed for basic food and shelter, as well as for disability related expenses.

Seeking to challenge this policy that treats people who share households differently based on their marital status, People First of Montana enlisted the assistance of several other groups to form a Montana Marriage Penalty Task Force. Members of the Task Force come from Disability Rights Montana, Montana People First, the Montana Advocacy Coalition, the State Independent Living Council, the disability rights organization ADAPT, th e Rural Institute at the University of Montana, and the general citizenry.

Why is there a marriage penalty?

The original reduction in benefits for a married couple, or a couple deemed to be married under Social Security rules, was put into place on the premise that there are “economies of scale” when two or more people live together. This “economies of scale” premise in SSI was patterned on the “economies of scale” present in the TANF program (originally ADC/AFDC) for families. When Congress implemented this “economies of scale” concept for married SSI recipients, they did so with no consideration for the extra costs faced by people with disabilities because of their disabilities.

And since SSI monthly benefit amounts have not kept up with the steadily rising costs of food, shelter and transportation, etc., an SSI dollar buys less and less every year. “Priced Out in 2006,” a national housing study published in 2007, found that the national average rent for a studio/efficiency apartment was less than a full SSI monthly benefit.

A further complication exists for people with disabilities because the definition of "married" under the SSI program is broader than the common definition. The Social Security Administration (SSA) may deem a couple to be “married” for SSI purposes if they “hold themselves out as20husband and wife to their community,” even though they do not meet the legal definition for marriage in the state in which they live. The expanded definition of marriage applies to situations where either one or both members of a couple are receiving SSI.

Typically when applying for SSI, proof of marital status is not required if the person does not live with an unrelated person of the opposite sex, and claims not to be married. However, if a person lives with an unrelated person of the opposite sex, each must explain their relationship and answer certain questions. Some of these questions include what names the two are known by, whether they introduce themselves as “husband and wife,” what names they use on their mail, who owns or rents their home, and if there are any bills, installment contracts, tax returns or other papers that show them as husband and wife.

How people answer those questions, along with other factors, is used by SSA to determine whether two individuals have “held themselves out to the community as married." Therefore, SSA can consider a couple to be married even if the couple has never been legally married.

Too often, people with disabilities who rely on SSI choose to live secretly with a partner to maintain vital benefits at amounts that barely cover basic food and shelter costs.

The U.S. Supreme Court has found that SSA’s marriage penalty does not violate the Due Process Clause of the Fifth Amendment, which prevents the government from depriving citizens of property, without due process. Unless another avenue for legal challenge emerges, Congress is the remedy for any potential “fix” that would change SSA regulations so that each beneficiary is treated as an individual.

Saturday, October 4, 2008

Up Close & Personal – Michelle Obama Visits CU-Boulder!

A word from Tammy: I try to keep my blog pretty neutral concerning a handful of topics. Politics at the top of the list! But I must post this one! And trust me, if McCain's wife came to my town...we would have a different message, but....we'd go! :-)

Sorry this is a bit outdated...

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Dustin here. I am filling in for Tammy as blogger on this one because she is way too busy with babies, school, homework, Power Soccer, and other stuff.

It all began Tuesday, when we got word (about the same time the rest of Colorado did), that Michelle Obama would be speaking at The Rally for Change at our very own University of Colorado (hereafter referred to as CU, and no, for those out of state readers, I didn’t transpose those two letters, it’s just how it is) in breathtaking Boulder, Colorado!

We of course took immediate action to prepare for this event located walking distance from our home. Tammy arranged for Bonnie to watch the kids. Wednesday morning while I took Benny to preschool, Tammy put together Power Soccer flyers to hand out to all users of motorized wheelchairs we might encounter (which turned out to be seven). As soon as Bonnie arrived we hurried out the door with a hastily prepared bag of snacks and water (forgetting Tammy’s sunhat and sunscreen).

We did RSVP Tuesday with the Obama campaign but this did not guarantee us entrance to the event – it was first come, first serve. Doors were to open at 10AM . We arrived at Farrand Field at about 9:30AM. There were several long lines with campaign volunteers at the end of each making sure no one else was added to the line. We would ask “where do we get in line?” and were pointed half way across campus. Luckily we eventually asked someone who knew there was ADA designated seating (which is really close to the stage) and we were among the first ushered into the event. Wow! They had those dogs busy sniffing for bombs and whatever for a long time! How much can you sweep the same area before deciding it’s clean?

We got sunburned waiting for the event to start, even after barrowing a baby’s sunscreen. It was a very sunny day! At one point, Tammy decided to have me tape the “reserved” sign, with a picture of Obama’s logo and the wheelchair symbol, on her head to shade her face.

Maggie Udall (Representative Mark Udall’s wife) came over, shook our hands and talked to us. Our friend Julie told Maggie to thank Mark Udall for supporting the Community Choice Act (ok, I admit I whispered that in her ear – Julie didn’t realize at the time that Maggie was Mark Udall’s wife – it was funny!). Governor Ritter’s wife was also there but she wasn’t as eager to mingle as Maggie and Michelle.



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After her speech, Michelle took ample time to shake hands and speak with individuals. It did get kinda scary because as Michelle got closer to us, the crowd did also. Luckily Tammy’s chair protected us from most of the pushing and shoving. One woman did get pressed against Tammy & wheelchair (causing only minor injuries but inducing a fair amount of screaming. Only one individual in the crowd was met with a gurney after being knocked down, but alas I digress…

As I said, Michelle took plenty of time to shake hands and greet the crowd – I shook Michelle’s hand and she listened to me while shaking other people’s hands.

“Please tell Barack Thank you for supporting the Community Choice Act for people with disabilities.”

“Barack has the disability vote. He is a real advocate for people with disabilities”.

“This is my wife; We’ve got two kids too” and she asked what their ages were.

She shook hands with Tammy, and I guess Tammy scratched Michelle. Tammy says Michelle didn’t seem to notice, but Tammy is still traumatized. I told her if we see Michelle on TV with bandages on her arm, we’ll know why. I didn’t know that Michelle’s father had MS until today. I guess everyone else already knew that.

I was really impressed with Michelle and I think she’ll make a great First Lady.

The pictures/ video clips I took were great if I do say so myself. It’s amazing what footage you can get standing on a folding chair! Move over Press and Media, Dustin is here!