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.