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.

Hockey

I applied for a financial aid scholarship for the Saint Cloud Youth Hockey Association.

And why is that?

I was hoping that mister Sandis would be able to play hockey this year. He is seven, he has unbelievable amounts of expendable energy, and he has an infatuation with the sport that is “the sport” in our household. Seriously. If we had TV channels we might even watch hockey. Even better, if we got the paper, we would think about checking the scores.

While browsing through the SCYHA website, I found that they also offer “Special” hockey which is targeted for youth with developmental disabilities. I pondered this, if only for a moment, and its pertinence to my family. I could have requested that Sandis be placed in the special hockey program. I didn’t. This is why:

Sandis is normal. Disability is a normal part of the human experience. Not every human is disabled, but neither is every human a man, or a woman. Outside of that, Sandis’s best opportunity to learn how to function amongst his typical peers is by actually spending time with his typical peers. As an aside, I’m hoping that if we are approved for this financial aid scholarship, that we can replace some OT (you know, the pushing, pulling, squishing sensory marathon that is Occupational Therapy) with a more natural sensory experience like hockey.

So cross your fingers for us…..Because we may just be a stick totin’, hockey skatin’ family in the next few months.

240

Gracie's most recent blood sugar was 240. I know I've been worried before. This time it feels different. It might be nothing. It might go down just like every other time.

I'm just worried because at 3:30pm she was 169, then at 5pm she was 194, and now at 8 she is 240.

It is hard to not notice that those bloodsugars are not trending down in any sense of the word down. In fact, they are trending most certainly up.

So I asked for pee in a hat, and what do I get? No pee. she just went pee downstairs.

It is hard not to cry a little, even if the tears are inward. The disappointment is just as raw.

Hopefully things resolve without that Novolog in the next few hours.

I'm not sure when Novolog in respect to Gracie became equivalent to devil/badnastyshit. But it has. I just don't want her to have what I have. How long can I pretend that she doesn't?

As long as I don't have to carb-count her meals.

I Can’t Do Everything

But I want to. I received a few emails yesterday from a coworker/friend. One such email concerns this CAN DO conference which sounds AMAZING. It is also held on a weekday from 9am – 3pm. Now, considering that I am allotted 80 hours of vacation per year, 64 of which are intended for use by my Partners in Policymaking training, I am left with a mere 16 hours of vacation that presumably needs to be saved for the inevitable childhood illness (excluding current chronic condition complications).

Participating in this amazing workshop is going to have to wait until next year. It breaks my heart, because I should be there, not here at this job which pays my bills (sufficiently important yes) yet does nothing to appease the mission my soul has endeavored to be on. As an alternative to attending this conference myself, I want to get the word out to other Minnesota families. According to the “Summary of Key Recommendations from Recent Reports and Work Groups on Disability Services” which was created to help inform CAN DO Action Conferences, there are at least 175,825 individuals in Minnesota who are receiving SSI and SSDI. There are countless other disabled adults and children who receive other services in the state of Minnesota. I’m hoping that if I help get the word out about these regional conferences (that just so happen to be FREE!), that it will draw some strong Minnesotan advocates to help create positive change in our state.

I, on the other hand, am planning upon attending a Forum hosted by Arc Central to share their 2008 legislative agenda with members and to reach out to policymakers concerning how their decisions impact the lives of individuals with disabilities. These are more time-friendly for me (6:30pm – 7pm on a weeknight) so are more workable with my schedule, and although I am a member of Arc Midstate, I’m sure they won’t turn me away. Please send a comment my way if you want more information on the dates and locations of these awesome opportunities to meet with your local legislators.

The Life Cycle of No

I have noticed that oftentimes a none-other-than-no metamorphs over time into a maybe and eventually a positive exclamation known more universally as a yes.

I find this absolutely intriguing. And evidence of the life cycle of no is not only present in my own life but in everything I come into contact with. We may start with a concerete no, absolutely not, never on your life even as we slowly morph into a perhaps if you can accomplish this or document that. After a certain amount of time, a time whose length is directly related to the persistence or insistence or perhaps annoying factor established by said inquisitor, morphs into a yes I suppose and once this stage is established a "yes, absolutely!"

When I began running in August of 2005 I could not even run a half mile. I had no notion of my goal to complete a half marathon until January of 2006, but even then, the completion of such a lofty physical goal (13.1 miles) was beyond me. This was a definite no. With the certain endurance capabilities I had acquired, even as such, I was far from prepared for a 13.1 mile course. But as weeks turned into months, finally on June 3rd of 2006, I finished, successfully, my first 1/2 marathon. So where I started from a most certainly not, through persistence and belief and consistency of practise, I accomplished something that will build my spirit in regards to my strength and my understanding of what I am capable of for the rest of my life. A couple months later I upped the ante and finished my second half marathon in approximately 10 minutes less time than the first. And a door that had ALWAYS been closed (the NO door) was once again opened. (The I CAN door.)

While running taught me amazing things about how my perspective of what I can achieve can radically change through persistence and dedication, I have read time and time again how committment to a cause can cause radical change outside of oneself. We need only look to the civil rights movement (not only for racial equality, but also women's suffrage) to garner awesome encouragement from groups that set their sites on a cause, a sense of entitlement, and did not sit passive after one, two, three, or even twenty of those restricting no's. Eventually those no's turned into a yes, and not just an okay, but an overwhelming acknowledgement of their fundamental equality.

This is also present in the current disability rights movement. If I had not had the awesome opportunity to meet some amazing men and women with cognitive delays, I never would have realized how functional and EQUAL these men and women are. I also would not have had the amazing chance to learn that our "humanity" does not have income limits, or even disability limits. Not one of us is less human than another, and each of us has an amazing story that has pivotal input in the grand scheme of the entire "human story" or "human experience."

My son, one year or so ago, received a Sony Playstation 2. Believe me, soon after giving him this box, I questioned my own sanity. Sandis playing video games resulted in instant and multiple meltdowns. It was HARD WORK.

Sandis has now beat Harry Potter (both of those video games for PS2) TWICE. This child that melted down because of the diffficulty of this game had enough persistence and PERSERVERENCE to stick with these games, for over a YEAR, and eventually beat the game.

A year is a long time for a six or seven year old. A really long time.

How long is that same year for a 29 year old? Moment enough to blink? How long is enough? When do I give up on what I believe in?

So while I endeavor to spread the word on disability rights, and while I make the effort to make this story of ours directly apply to you and your life, and your family's lives, and your friend's lives.....I understand that this is a lifetime objective.

And there is not a NO that will stop me from finding that YES that I am certain is just a little bit farther down the line.

Another Time

At times, it would seem, that memories of another time are nothing but a disservice to the current time.



Now while I understand that everyone who lives to be my age (29) was at one point in time 16 (or for that matter 17), sometimes I wonder if the memories that others have of this time period are as disturbing and displacing as mine are.

That picture up there? That is me. Oh well, I'm the girl (obviously) and the boy? Well he is of no primary importance. Although, he was of utmost importance for around 3-1/2 years of my teenage existence.

I don't remember ever receiving this picture. I don't remember this picture being taken. But I remember me. I remember him. And as such, I received it at some point as a gift from the boy illustrated above, who I seem to have locked lips with. He, as is apparent by the scrawls on the back, was in some sort of love with me.

I must say, remembering, it makes my skin crawl. Should it be that remembering one's teenage years causes such a revulsion? Or perhaps it is just remembering this him, this nameless he-person that affected my life so miserably for so many years.

It was long ago, 13 years at most, 12 years at least, since this picture. I found it, face-up, in the middle of my living room floor. I haven't the foggiest idea how it got there, but I imagine that one of my children (in the hustle and bustle and lag times of weekend life) found this picture amongst others and exiled it to the center of my living room carpet.

I don't ever remember this picture being taken, as I said. That perturbs me. Here I have a most (ominous as it feels) literal memoir of my past, yet it seems to have never existed, this moment in time, for me.

I imagine it was taken in a cemetary in Littleton, CO. I imagine, I cannot be wholly certain.

I am entirely uncomfortable with it's presence and as such, my ownership of it. But I am drawn to it, searching the far-reaches of my mind, seeking out what I have long left behind.

Is that not odd?

Check it out!

So the St. Cloud Times took my note to heart, and published my letter to the editor!

I had to cut 120 words from the original, but that wasn't so hard. I'm a writer who uses a lot of fill.

Credit Where Credit is Due

I’ve been inspired recently by an awesome woman named Kathie Snow.

Kathie Snow is an amazing disability advocate. She has written many articles, a book, and also travels the world as a speaker. The first resource packet (reading material) I received from Partners in Policymaking was stuffed to the brink with Kathie’s articles.

Kathie has opened my eyes to the importance of language, the effects of language, and the importance of full inclusion. Many of my recent thought processes have been heavily influenced by Kathy.

Please go check out her site Disability Is Natural and give her stuff a look-see. She is amazing, inspiring, and thought-provoking.

In His Words

My son receives special education services. As a recipient of these services, he also has had an opportunity to befriend many children that also receive special education services but have less opportunities for integration and mainstream class experiences. Today Sandis had some thoughts about one such little boy that I’ll call “Bob”.

“My friend Bob doesn’t talk out loud using English, Spanish or even sign language. He talks in other ways but in quiet. Sometimes he and I get into trouble because we are playing and not doing what Mrs. ----- wants.”

This is fascinating to me. It never occurred to my son to say that Bob didn’t talk or that Bob is nonverbal, he just doesn’t talk “out loud.” He talks, of course, because Sandis communicates with him and plays with him several times a day, but it just isn’t in the way that you and I are used to.

So why is this important?

This is important because my son is demonstrating to us adults what true true lack of discrimination is. The very fact that it never occurred to him that Bob didn’t talk, only that he talks differently, is awesome and telling. I have seen the word non-verbal in reference to children and adults many times, but now I question its validity.

All humans, regardles off their abilities, communicate. Some just don’t talk “out loud."

An Open Letter to The Saint Cloud Times

Check me out, I'm here now!