Quite possibly I am obsessive.

Obssessive. Obssessive.

I’ve been listening to the same set of White Stripes songs all morning. That is, since 7am this morning. That is four hours of non-stop Jack obsession. I fully intend to continue this, breaking only shortly for lunch, until 3:30pm.

Should I ever have another child (doubtful) I shall name this child Jack, irrespective of gender.

I wonder, perhaps, if I am losing my mind. I wonder exactly where my mind has been. I wonder how or why it is quite so often difficult to find the words I am seeking or to focus the jumble of activity that is in my mind. Focus beyond the jumble, for it is easy to focus within. I wonder how it is that vocabulary is a fancy of mine, while spoken communication seems to be such a garble.

I find a rhythm in Jack’s works that precludes everything. A rhythm that is quite possibly in sync with my own personal rhythms. Sound odd? Perhaps, but sometimes I get the impression others feel that way about the Beetles, Grateful Dead, or even Cat Stevens (I know, weird right?)

Maybe it’s whatever in my head that’s distracting me. But if I could find emotion to stimulate devotion, well then you see…..(stolen words)

Sandis the Hockey Man

We've gone and done it. We signed the little man up for hockey. We start next weekend.

I have been arranging a para to assist Sandis on the ice. I think he will be pretty good out there except during practise when he is waiting or needs to be patient, or during games when he is on the bench.

I have been working with ARISE to find him a para to help him with hockey, and well, they aren't necessarily the most hopeful. Apparently the Youth Hockey Association is not the easiest to work with in regards to paras.

It's cool though, I'm ready for whatever I have to do to get him out there with all the typical kids for a typical hockey experience.

We try on hockey gear this Thursday. We bought the skates this past Sunday. My son is the Black Tack little guy.

I'm so excited, I just can't even express...! I mean, really, do you EVER wonder where the name Sandis came from?

The Journey Within

Dear Kathie,
I had to come and see your website! I am in class 25 of Partners in Policymaking in Minnesota this year. In our first month's resource packet we were literally inundated (in a good way!) with your articles. As I made my way through your various articles, everything you said made more and more sense. I am attending Partners as a parent of a child with a developmental disability. In one of your articles you mentioned an adult named Howard who broke into tears during a Partners training after he told you about how his father always introduced him as "retarded". After reading this tears sprung into my own eyes. I can't say how many times I have flippantly told others, in front of my son, my son's diagnosis. You have opened my eyes in more ways than one.

I later had a short conversation with my son and apologized for any time I ever discussed his diagnosis and acted like he wasn't around. My son is 7, and do you know what he said? He said: "It's okay mom, but just don't do it anymore, ok?" And then he cried

I honestly never realized I was hurting him.

Thank you so much for opening my eyes!

I am so excited for the rest of Partners. You ve mentioned in a few places on your website how Partners changed your life. I can already say it has changed mine.

The pivotal aspect of this experience was not writing the email to Kathie, or even the realizations I had as I read her articles. It was the exchange I later shared with Sandis. I can’t easily explain the sinking feeling I felt when, after apologizing to my son, I realized he knew exactly what I was apologizing for and that it had been a source of hurt for him time and again. I see my children cry often, but I never want those tears to be a result of my own callousness.

This entire experience gave back to my son the respect and humanity I had unintentionally taken away from him.

I spend so much time attempting to change others’ views so my son is regarded as an equal with other children and as deserving of inclusion and respect as any other child. I have learned that this change begins with me and my own actions. Hopefully this will encourage others to follow suit.

No Bite

My house is hilarious. And admidst all the giggles, we contemplate losing our minds.

Have you ever heard of No Bite?

This has been our family solution to thumb-sucking. Amazingly enough, it has been remarkably effective.

The drawback? (and there always is one....)

Removing the oral sensory satisfaction of the thumb has invoked a new oral sensory past-time. Namely trilling. Of course there is the occasional filler sound, but for the most part trilling.

Constant.Mind-bending.Eye-straining.Head-Ringing.Trilling.

So yes, we will continue to use the No Bite to help erase the thumb-sucking. The dentist mentioned something along the lines of decreased mastication and surgery should we not get rid of this rueful habit.

But....

What about all the trills?

On Apathy

The House failed to override President Bush's veto, and I imagine Mr. President in some surly swagger. Why surly? Surly for the very fact that our democratic house tried to override his "very relevant" veto-ing power in the first place.

I guess there is one key thing to remember in what most certainly feels like a failure. One No often time just isn't at the peak of its current life cylce. Perhaps we need a few more no's before we get that resounding yes we know that our children and families deserve.

I've talked often of the joys of persistence and I've noted how eventually, oftentimes, that no turns into a yes. This is an especially important concept as we are bound to feel phased out and unimportant in the political scheme of things. But things change. Decisions that were once a no oftentimes gradate into a yes.

The tricky part is ascertaining how to mold those no's and garner a yes.

This is my feeling on politics: Your representatives have no way of knowing your story. It is unrealistic to assume that someone else has told your story. That means that your representatives are voting on laws that will affect YOU yet they have no true concept of what effect their vote will truly have.

This is where you come in. You come in to tell your story. You take the time to learn about the bills that affect you, your children, your family, your friends. And then you send an email, write a letter, and make phone calls and you tell your story. It is our stories that, over time, have the propensity to fuel the most positive change. Why is that?

Our stories infuse political bills with humanity. Humanity makes these bills powerful, and sometimes, our humanity can change the course our very human politicians will take. Their yay or their nay.

One gift I have taken thus far from Partners in Policymaking is I seem to have missplaced my apathy.

Thank God for that.

And may we all find a niche in which to permanently dispose of this acrid state of personality.

SCHIP Vote Today!

Please, call your House Representative and urge them to override President Bush's veto of the SCHIP Bill. Go here if you aren't sure who or where to call to get this done. Hell, they'll even give you a script to read to them there.

Why is this important to me?

My family is important to me, my Gracie is important to me, and should this bill not pass my peanut will lose her Medicaid next year at our re-evaluation. We have private health insurance and secondary Medicaid for Gracie. Due to the fact that she is not considered disabled under federal standards, her Medicaid eligibility is determined by my income. Last year I was $200 dollars under the annual income cap for my family size. My annual 3% will put us up and over this cap. What will that mean for miss Gracie? We will no longer be able to afford her Occupational and Physical therapy. We have private insurance, but seriously, our percentages and copays for therapy would be more than my income could handle (something like $90 a week?).

It really makes you wonder about the current available healthcare system in the United States. Even the people that HAVE health insurance can't afford appropriate care. That's pretty sad.

Outside of my family, this affects so many families. Lower income families, or middle-income families, with no available and affordable health insurance. How is this justifiable? And why is it distorted into some kind of "socialist" movement when we try to insure the health and vitality of our future, our children? It makes no sense to me.

I'm hoping that the House restores my hope in America today. I guess my hopes aren't all that high though.

If you want some more facts, go here.

A Response to Michele Bachmann's Form Letter Regarding SCHIPS Bill

“Thank you for contacting me about the State Children's Health Insurance Program (SCHIP). I appreciate hearing from you on this important issue. Unfortunately, the program has become politicized, and Congress recently passed legislation to expand SCHIP coverage beyond children, beyond U.S. citizens, and beyond those who are truly in need, and that is where the problem lies.”

First of all, I would imagine that a program that must be politically approved is open to some measures of politicization. Assuming that politicization is bad, you are just as guilty as anyone else of politicizing this program.

SCHIP coverage moves beyond US citizens in the form of Emergency Medicaid. If you are not familiar with this program, I will help to enlighten you. Emergency Medicaid is created not to assist illegal immigrants (or rather those who are not US citizens) but rather to act as a safety net to hospitals that provide care to illegal immigrants in emergency situations. Hospitals cannot send an emergency patient away because they are not citizens. This is unethical, inhumane, and even were it ethical and humane it is not easily practiced (How exactly do you verify a patient is a citizen while said patient is having a heart attack?) It is near impossible to track these patients, or set any consequences for not paying the bill for this service. Emergency Medicaid was set up to give reimbursement to hospitals for what they would never be paid for as a result of following law as well as ethical standards. People who are not US citizens qualify only for Emergency Medicaid in “emergency” situations (i.e. traumas).

Adults who are covered under the SCHIP program are covered because said state has received a waiver from the federal government allowing them to do so. How does a state receive a waiver to cover adults, you ask? They receive a waiver to cover adults when they prove they are covering a large percentage of children who are eligible for the SCHIP program, and in doing so have money leftover with which the federal government allows that state to cover adults. In fact, you should know this Ms. Bachman as one state that receives this type of waiver is Minnesota! States that are under-serving their eligible children would NEVER qualify for this type of waiver to cover adults.

Another aspect of this bill is the removal of requirement to provide proof-of-citizenship to receive SCHIP benefits. In Wisconsin alone, there were 21,000 children whose SCHIP coverage was cancelled due to inability to provide proof-of citizenship (ie. birth certificate). Many of these children were known to be US citizens but did not provide proof. Eligible children are ending up not having the health insurance they qualify for because of a technicality. This provision attempts to accommodate for that sad fact.

“According to the U.S. Census Bureau, several million SCHIP-eligible children are still uninsured. Surely, children in need should have the health insurance promised to them before expanding SCHIP further up the income ladder or using more of the program's limited resources for adults.”

Each state should be held accountable for programs designed to help inform the public about the SCHIP program. Not all states have informed the public about SCHIP as well as Minnesota (again your state!) Perhaps they could take some cues from Minnesota to work harder to cover their children. Although, I do wonder how states not getting the word out to eligible children means that this SCHIP bill should not be approved. As stated previously (and you should know and understand this!) states that are not adequately insuring their eligible children would not be eligible for federal waivers to insure adults!

“Here's my idea. Let's cover the kids first. Let's focus on children in need without access to health insurance, and fund SCHIP as it was meant to be. I've publicly supported legislation that would accomplish these goals and keep SCHIP moving forward to help those it was intended to help. “

That is the goal of the current SCHIP bill!

“But some want to move SCHIP in the wrong direction. Under the bill passed by Congress and vetoed by the President, SCHIP dollars could be used to cover childless adults and more affluent families - in some cases, households earning up to $83,000 per year. It also changes current law to make it easier for illegal immigrants to get SCHIP funds.”

I’ve heard that $83,000 word flung far and wide like it actually affects more than one state. Ya, that’s right. That $83,000 cap is obtained by a waiver in New York State. Which makes sense in NYC. $83,000 in New York City is nothing like $83,000 in Minneapolis. In the state of Minnesota, the actual income limit would be just under $63,000 for a family of four. As far as the illegal immigrants and SCHIP funds comment goes, please see above. I would like to point out, though, that your misleading references in regards to how money in SCHIP is used are tiring.

“Rather than focusing on low-income, uninsured children, a Congressional Budget Office (CBO) study shows that more than 77 percent of children affected by this expansion already have personal, private health insurance. In other words, the bill creates an incentive that pushes kids out of private insurance into a government-run program.”

Have you ever heard of Medicaid fraud? I’ll help you out on this one. In the state of Minnesota, if you have affordable private health insurance (determined by employer paying at least 50% of premiums) it is ILLEGAL and FRAUDULENT and punishable by FINES and JAIL TIME should you drop your private affordable health insurance in lieu of the public SCHIP. There is more to this though. Did you know that the state of MN actually contracts with private health insurance companies to provide SCHIP coverage? That’s right. That means that the children and adults in the state of MN covered by SCHIP as a primary health insurance are covered by a private health insurance that is contracted by the state of MN.

So…………..Government run? Not exactly….Government paid for to promote our garish capitalist state? Absolutely.

“Worse, this legislation makes SCHIP financially unstable. In order to appear fiscally sound, it gives children health insurance for 5 years, and then it cuts SCHIP funding by nearly 80 percent - a classic bait and switch that will cause millions of American children to lose their health coverage.”

Well, this may be the one drawback I MAY agree with.

“According to the CBO, the bill will lead to only 800,000 currently eligible-but-unenrolled children being enrolled in SCHIP by 2012. The sad fact is that it would be cheaper to give each of these kids $72,000 than it would be to enact this bill, and it would probably show healthier results.”

I doubt that is the fact, but since you aren’t going to vote yes on this bill anyhow, where’s my 72 grand?

“Rather than playing politics with children's healthcare or scoring political points with radio and TV ads, I believe Congress should show the American people that we are here to solve problems, and I will continue encouraging House leaders to do the right thing by bringing up an SCHIP bill we can all support.”

Oh, do you mean that SCHIP bill that would end up cutting the number of eligible children, remove all eligibility for adult waivers (even if the kids in your state are covered to an overwhelming degree?), shut off Medicaid reimbursement for transportation services to disabled children, and would offer a “tax credit” to people who purchase affordable private health insurance? Oh, and just to cue you in, SCHIP is available to people who don’t have affordable health insurance available so they wouldn’t get that tax credit. Another clue concerning that? Most families on SCHIPS don’t make enough money to even PAY federal income tax, so what good is a tax credit on tax you don’t pay? No good, that’s how.

”Once again, thank you for contacting me. Please keep in touch.
Sincerely,
Michele Bachmann
Member of Congress”

Thanks for your support. I appreciate all the “politicization” you had to offer.