See What Happens When I Stop Paying Attention?

The Honorable (and Presidential, even) George Bush vetoes yet another bill(Labor-HHS-Ed bill (H.R. 3043)) that would have been beneficial for children and adults with disabilities. I’m beginning to think that all this vetoing power is going to the man’s head. What makes it even sicker is despite constituents urging their legislators to vote to override these vetoes (read SCHIP) there are a remaining few who refuse to cross party lines and stick on the buddy fence with the President. I’m not exactly sure what this is accomplishing for these politicians personally, but in regards to passing meaningful bills that are supported by their constituents they are failing miserably.
This bill funds a vast array of programs that are designed to meet the disabled community’s needs. To name a few (including which programs in the bill saw an increase from President Bush’s recommendations):

IDEA (Local Grants, Part B, and Part C Increased)
Vocational Rehab (Increase)
Supported Employment (Completely cut in President Bush’s budget, kept at previous years funding in bill)
Assistive Technology Programs (Increase)
Office of Disability Employment Policy (Increase)
Work Incentives Grants (Completely cut in President Bush’s budget, reduced from previous year in bill)
Administrative Services for Social Security Administration (Increase)
State Grants for Developmental Disability Councils (Increase)
Protection and Advocacy Systems (Increase)
University Centers for Excellence in Developmental Disabilities (Increase)

This is a short view of what the House & Senate agreed upon in this bill. Keep in mind that these increases are increases over the President’s proposed bill, not necessarily increases from last year’s funding. If you want more info, go here.

I find it appalling that the President vetoes a bill because the appropriations are different from what he proposed, and more correctly MORE than he proposed. Did you notice he intended to complete CUT the supported employment and work incentives grants? What sort of support is that for full inclusion of disabled adults in the community? Apparently President Bush doesn’t really feel working is appropriate for disabled adults?

Please, make your voice heard and email or call your representative in the House to vote to override this veto, TODAY. If you aren’t sure who your representative is, or how to get in touch with them, go here for some direction.

We all have a responsibility to make our voice and our community heard. If we don’t SPEAK UP, who will?

November is Diabetes Awareness Month

And on that note, I’d love to spread some awareness, so let’s start with some basic facts that are contrary to some common myths associated with diabetes.
1. Diabetes is not caused by eating too much sugar.
2. You CAN eat sugar if you have diabetes.
3. Type 1 diabetes is managed very differently in many ways than type 2 diabetes.
4. Diabetes is not caused by being overweight. If that were the cause, all overweight people would have diabetes. The incidence of type 2 diabetes is , however, higher in patients who are overweight.
5. A person with diabetes can have very healthy babies (and many have).
6. You cannot manage type 1 diabetes with diet alone. Ever.
7. There is no set or specific “diabetic diet.” A diet for any person with diabetes is determined in tandem by the person with diabetes and their doctor.
8. If you have type 2 diabetes and are overweight, you do not “lose” your diabetes if you lose weight.

I don’t often focus on diabetes awareness on this blog. And honestly, I can’t say that my “averages” are all that hot this past month or two. My last a1c was 7.5 and my average for blood sugars last week was 183.5 (OUCH!) I’m seeing more and more highs, and feeling more and more complacent about it. I am feeling overwhelmed.

I think these periods are common for most people with diabetes. Managing diabetes is not done once every 90 days with your endocrinologist. Diabetes management is 24 hours a day, 7 days a week, with no breaks ever, not even when you are asleep. The weight of diabetes management at times is intolerable. It is at these times when control slips, and good habits lapse.

Outside interference, as I like to call it, is often not helpful in these instances. Should a coworker gently probe about my “ability” to eat a snack size chocolate bar, I will more than likely in some sort of rebuff eat three. I can eat chocolate, and outside opinions in regards to my very personal diabetes management are generally not welcome. Would you chide my daughter for running around for an hour without her theratogs and braces? No. Her care. Our care. Not yours. I was diagnosed early enough in life that at some point your taxes (and mine, thank you) will be paying to correct complications. That is not so much a failure on my part rather than a failure of my endocrine system in general at a very young age combined with the failure of our national health system (nothing much natural about it) discouraging appropriate care for young people with type 1 diabetes.

Type 1 diabetes is hard work, and it is work that I am very much engaged in. This is my health, it is important to me, and I understand that here shortly I will be out of this slump. It is important, though, to realize and understand that an occasional slump in rigidity of care may be necessary for emotional health. The very scope of care that our disease requires is exhausting, and there are bound to be hills and valleys in the timeline of care throughout our life.

November is diabetes awareness month and I am sharing with the world, today, that it is okay to sometimes not be in that good of control. Sometimes this is okay. Not forever, and not ongoing, but sometimes. Afterwards we have the responsibility to get back on track, and as long as we never lose sight of that, we are okay. We have to give ourselves that bye, every once in a while.

To every person (adult, child, teenager) struggling with diabetes today, please take it to heart that you are struggling as evidence that you are working for a better result.

A Different Focus

I wrote two lists of adjectives that reference my pumpkin and peanut. Can you tell which list is for which child?

Energetic, Amazing, Smiling, Fun, Spirited, Technical, Logical, Circuited, Literal, Sly

Persistent, Amazing, Shining, Bouncy, Opinionated, Vocal, Caring, Loves Animals, Imaginative, Direct

My children are the recipients of a ton of regulated programming that is individually tailored to their needs and offered by the school district, county, and private health care providers. All of this programming focuses on their deficits.

I took the time and energy today to focus only on Sandis' & Gracie’s attributes. These are the attributes that make my children the individuals that they are. I hope to add to this list as they grow older. I also intend to share this list with them, and often. Because really, how could a technical, logical, sly, smiling, and energetic person have any problem not realizing his/her dreams? On that same note I foresee that an imaginative, opinionated, caring, direct, and persistent individual can create a lot of positive change in whatever endeavor he/she chooses.

Lastly, I would like to point out that both children received the adjective “amazing” in their list. I unintentionally chose this word for both children while attempting to choose different words for each child.

Amazing how that works eh?

SEAC Appointee Reporting

Please take a moment to say hello to me, the newest appointed member of the District 742 Special Education Advisory Council.

I know this may come as a surprise, but although I am quite vocal at times on this blog, oftentimes my doings I keep in secret. In this way, I won’t be embarrassed if I am turned down for an advocacy position I desired enough to warble my way through an application for.

In these past few months I have taken on a sizable amount of additional responsibility in regards to disability advocacy in the community. It all began with my acceptance into Partners in Policymaking. A few months later I was given the opportunity to help facilitate the local Parents of Children with Autism Support Group which is sponsored by ARC. Now included in my fold of activities is the SEAC.

In this past year since Sandis’s autism diagnosis, Gracie’s diabetes diagnosis, and the ensuing chaos as a result of these diagnoses, there have been many individuals in the community that ensured that my family was not lost in the shuffle. The sheer amount of paperwork involved in ensuring that your child has services is overwhelming at best. I realized very early on that I could not have garnered the services and supports my family has were it not for these individuals.

At some point, our lives, my family, we fell into a groove. We still have our days. There is still chaos. But within that chaos there is an order, and also, there is a peace as through our journey in the past year we have learned so much about our rights and how they apply to our lives in the community. This is no small feat.

At what point should I acquiesce and idly warm my seat as my family has been provided for appropriately? I’ve come to the conclusion that there is no time for warming my seat. The reason is this: My family’s successes are fueled by the hard work and advocacy of all the families before me. Where other families in the past had no opportunities for community based life and services that my family does. It is only through their exhaustive work that we have what we have. I have a social responsibility to continue this work so families after mine will not have to work as hard as I have for appropriate services, inclusion, and bureaucratic accountability.

Apathy is not appropriate. If you have the inclination to complain about the current set of societal circumstances, then you have the initial background necessary to facilitate positive change in your community. It takes time, and everyone is Busy. Yet in the time you take you demonstrate to your children, you acquaintances, and friends that community involvement is essential for any community to thrive.

This is Freakin' Fabulous!

I love this, how he wipes out three kids at the very end......



And lastly, Sandis movin' the puck.



And yes, it really is that loud in the rink!

It's All About Hockey, Baby!

So we have ventured forward into the alternate reality I'll call hockey from here on out. I'm not certain how familiar ya'll are with this reality, so I'll help you out as best as possible. I've talked about wanting to get Sandis enrolled in hockey before, so the response from the SCYHA that he was approved for a scholarship was awesome indeed. From there we ventured out into hockey, and first step is? Obtain hockey gear. We bought a new pair of skates (new to us anyhow) that fit and acquired all that hockey gear.

All.That.Hockey.Gear. This presented a slight problem. Sandis barely tolerated trying the helmet on, and our hockey situation quickly devolved into a squeaking, screaming, sirening Sandis the longer the helmet stayed affixed upon his head. I devised a plan.....Desensitize the boy to the gear (the helmet, all that velcro, and poking) by foricng him to wear the gear for an hour a night.. We successfully accomplished this by none other than bribery...Video games!



Imagine my surprise when after all that bribery and malcontent on mister Sandis's part, I discover after affixing the mouth guard on the helmet, that herein lies the solution. Sandis sets the mouthguard in his mouth and there goes all the complaints. It is like a chewy tube that forms to the shape of your mouth. Fabulous. The people that created these things were smart buggers indeed.





So this afternoon we ventured out onto the ice. Skating is HARD.













And then, sometimes THEY make it HARDER.





But you know what, after a while things started to come together.











I watched in shock, at times...Is that my boy WAITING IN LINE?





Here is proof of the benefits of inclusion. Sandis is doing what all the other kids are doing. He is just another one of the boys.





There was even a few opportunities for one-one-one coaching.



At the end of the day, Sandis and Hockey, well they were two peas in a pod.

Inappropriate No's

I’m not exactly sure what it is with District 742 and Stearns County, but I sure am tired of being told no before any evaluations are actually done that justify that no.

I have requested a waiver assessment for Sandis. Why? The waiver would be beneficial for our family and help secure services and supplies for my guy more readily than what our current system of support does. The waiver would help to pay for not only his PCA services, but also Occupational Therapy supplies for his home environment, alarms for our windows and doors (ever the escape artist he is!), and also help to replace household items he has aided on their journey to heaven (figuratively speaking). This stuff gets expensive, and there are times when waiting for that Family Support Grant to be approved (or denied) we lose our opportunity to offer him the positive help he needs in the time frame he needs it. Requests go something like this.

Me: I’d like to apply for waivered services for my son.
County: I don’t believe he’ll qualify.
Me: I’d still like to apply.
County: Even if he is approved he’ll just go on a waiting list. And even then, he’ll never get to the top of the list because persons more severely affected will always go to the top of the list before him.
Me: Are you telling me I can’t apply for a waiver for my son?
County: I wouldn’t say that. I just don’t see the need.
Me: I’d like to apply for waivered services.
County: Let me talk to my supervisor about this and I’ll have him get back to you.

And so it goes. It pisses me off to no freaking end. How can you say he won’t qualify if you aren’t evaluating him? Just this past April I was advised not to apply for PCA services because he wouldn’t qualify. I persisted, and I insisted, on PCA evaluations. And guess what? He not only qualified he was given 14 hours of PCA services per week. Please, Stearns County, give me the reason that you would tell me he doesn’t qualify when you can’t possibly determine that without an evaluation.

On to scenario two. I have requested special education evaluations for Miss Gracie. Gracie is doing awesome in district preschool. She is there 3 days a week for 2-1/2 hours a session. She isn’t doing so hot in her private day care, which is also a Minnesota accredited preschool program. So we’ve implemented some sensory accommodations into this program and it has helped magnificently. She spends the majority of her school days in this program, so it makes sense that if she has problems it will be where she is the most. Next year Gracie starts kindergarten, but the accommodations she is receiving at her day care you don’t get in public schools. Well, you don’t get those type of accommodations without an IEP. So here is how this one goes:
Me: I’d like to request special education evaluations for my daughter and here is why:_____.
School District: We will bring that concern up with our team and they will decide whether or not evaluations are appropriate.
Me: My concern is just as valid as any other professionals’ concern. I’d like her to have special education evaluations.
School District: Gracie is doing wonderfully, with no problems, in her district preschool class. That shows she is not educationally affected. She more than likely will not receive special education evaluations.
Me: Gracie has had documented problems in more than one area, both at home and at her day care. Her day care is an accredited Minnesota preschool, is a learning environment, and is where she spends the majority of her day. She is educationally affected and I expect her to have evaluations.
School District: I’ll have someone follow up with you regarding whether or not she will receive evaluations after our team meets in regards to this.
Me: When will that be? I’ll call you on that day. (Monday)
So here is the deal, I really want to know where the hell these people (professionals?) get off denying my children their basic rights to services and accommodations because they “feel” like they won’t qualify. Evaluations are not based on feelings, they are based on actual EVALUATIONS.

So please, Stearns County & District 742, stop telling me your feelings. I really don’t care. I don’t have the time, or the patience, to discuss your personal feelings in this regard. Make the appropriate referrals, and let’s start the appropriate evaluations, and THEN we’ll talk about whether or not my children “qualify”.
Until then? Kindly hold your tongue.