Yesterday was a day, and at the end of the day, I was thankful that I left my job WITH a job.
I have a couple of things I need to talk about today. The first is this: Recently a man was arrested for suspicion of drunk driving. The man refused a breathalyzer so he was arrested and put on a 48 hour hold in a detention center. The man was brain dead and unable to be revived the next day in his cell. The death is unusual, but there is more, which I think you will find interesting. This man had diabetes. When this man was detained police officials asked him if he would like to test his blood sugar, yet he declined. They did not pursue the matter further. Later the next day the man was found dead and the reason for death is untreated diabetes.
The uneducated person may say, “He declined to check his blood sugar, this is what he gets!” It is what he got, I suppose. But ask yourself this. If for whatever reason one day you are detained by officials and at the time of your detention, what you truly need is a hospitalization, would you rather “Get what is your due” or would you rather that the officials value your life enough to provide you with appropriate medical care? Is the sentence more important than an individual’s life?
The very fact that the police officials asked this man if he would like to check his blood sugar indicates that they knew of his diabetes. Individuals with diabetes know that ingestion of alcohol can cause severe and prolonged low blood sugars, which may make an individual unable to care for their needs. This in and of itself is life-threatening. Add to that, assuming the gentleman that died is a type 1 diabetic, he will not live very long without insulin and a full 24 hours without insulin could indeed be a death sentence. Another twist, sickening as it is, is this man’s mother had been in contact with detention facility officials asking them to treat this man’s diabetes. Is drunk driving really punishable by death? Apparently only for diabetics. I found this story in the printed Saint Cloud Times today. I was not able to find it online. If you find this story online, will you please send me the link?
The end result of this is that this detention facility, the main jail in Ramsey County (Saint Paul), will now have 24-hour medical care. Is this appropriate recompense? I really don’t know. What do you think? I think more appropriately there needs to be a protocol that is followed when any person with diabetes is admitted to the facility.
The last bit of news is that the Saint Cloud School District (#742) is having a town legislative forum on Tuesday December 4th at 6:30pm at Apollo High School. You better believe I am going to be there, and it just so happens that my Tuesday night is free next week. I’m afraid that if I don’t go, there won’t be any parents yelling about the importance of our special education supports. Cuts in special education are not appropriate by any means. Call me the guardian angel of Spec. Ed. Funds (this is me being grandiose).
Thursday, November 29, 2007
Tuesday, November 27, 2007
Integration
They say there will be a reduction in back office staff, “less than 30 people.” I assume that means 29 people. I can’t help but feel stuck in this endless loop of “Will I have a job tomorrow?”
Big business isn’t something I really feel comfortable with. I am not the neck-to-neck competitive sort. I believe in success, but I’ve always had trouble understanding why success equaled both a winner and a clear loser.
I may not have a job tomorrow. If I do, that means someone else lost their job. It is exactly 28 days until Christmas. Perhaps enough time to spend in a rehab, and perhaps enough time for an evil zombie disease to take over and subsequently eradicate most of humankind and in turn themselves (28 days later…) 28 days is not enough time to find the resources to pay a mortgage, car payment, insurance, put food on the table, and lastly cough up some Christmas presents for little (and bigger) ones.
Sometimes losing sucks. I understand that corporate (our new corporate) will have you believe that this is not losing, this is just change. They can even spin it (in however foreboding a manner) and call it “integration”. Because integration is good right?
I really hope I have a job tomorrow.
Big business isn’t something I really feel comfortable with. I am not the neck-to-neck competitive sort. I believe in success, but I’ve always had trouble understanding why success equaled both a winner and a clear loser.
I may not have a job tomorrow. If I do, that means someone else lost their job. It is exactly 28 days until Christmas. Perhaps enough time to spend in a rehab, and perhaps enough time for an evil zombie disease to take over and subsequently eradicate most of humankind and in turn themselves (28 days later…) 28 days is not enough time to find the resources to pay a mortgage, car payment, insurance, put food on the table, and lastly cough up some Christmas presents for little (and bigger) ones.
Sometimes losing sucks. I understand that corporate (our new corporate) will have you believe that this is not losing, this is just change. They can even spin it (in however foreboding a manner) and call it “integration”. Because integration is good right?
I really hope I have a job tomorrow.
Monday, November 26, 2007
Upcoming Events and Fare For All
These next few weeks are pretty full of new opportunities for me. The Parents of Children with Autism Support Group meets this Thursday, and it is my third meeting as co-facilitator. Partners in Policymaking weekend #3 begins this Friday. Next week Gracie begins her IEP evaluations. December 11th I will give my first testimony before legislators concerning Improving Health Care Coverage including Home Care and Therapy. Sandis has an IEP review team meeting the same day as my testimony. There is a lot going on, and I couldn’t be more pleased with the level of involvement I have.
Here is the official flyer for the Legislative Town Forum.
Finally, I found a great resource the other day while waiting in line to sign my kids up for Toys for Tots. Sometimes, you know, that happens. You find a great resource while thinking only of other things. This particular resource is not a resource only for the disabled community, but more a resource for all families. Please take a moment and check out Fare For All . This program is really stinkin’ cool.
Food is a universal need. The cost of food and the limiting factors associated with its cost, especially for working families who do not qualify for federal food assistance, or older adults on fixed incomes that qualify for very limited or no federal food assistance. My family is a working family. We spend approximately 400 dollars per month on food and toiletries (or more depending on the month). Fare For All distributes (for a price, but a hugely reduced price) FRESH fruits and vegetables as well as frozen meats. This program really addresses the highest need for food, because this is just the sort of food you CAN’T get at a food shelf (or most food shelves).
I am going to try this program out and I will share with you the types of food I receive. For $17, how can I afford NOT to?
Here is the official flyer for the Legislative Town Forum.
Finally, I found a great resource the other day while waiting in line to sign my kids up for Toys for Tots. Sometimes, you know, that happens. You find a great resource while thinking only of other things. This particular resource is not a resource only for the disabled community, but more a resource for all families. Please take a moment and check out Fare For All . This program is really stinkin’ cool.
Food is a universal need. The cost of food and the limiting factors associated with its cost, especially for working families who do not qualify for federal food assistance, or older adults on fixed incomes that qualify for very limited or no federal food assistance. My family is a working family. We spend approximately 400 dollars per month on food and toiletries (or more depending on the month). Fare For All distributes (for a price, but a hugely reduced price) FRESH fruits and vegetables as well as frozen meats. This program really addresses the highest need for food, because this is just the sort of food you CAN’T get at a food shelf (or most food shelves).
I am going to try this program out and I will share with you the types of food I receive. For $17, how can I afford NOT to?
Saturday, November 24, 2007
Improving Health Care Coverage Including Home Care and Therapy
I've been asked to testify at a town forum sponsored by ARC and UCP on December 11th in Saint Cloud. I will be talking about Health Care Coverage Including Home Care and Therapy. Districts 14 & 15 policymakers (Sate of MN House Of Rpresentatives) will be present and it will be to them that I will be stating my case. I've put up my first draft. What do you think?
Good evening. My name is Sarah Rittmann and I live in Saint Cloud with my two young children, Sandis and Gracie. I first want to thank all of you for the opportunity you have given me to share with you the need for improvements in health coverage including home health and therapy options.
My son Sandis is seven years old. Sandis LOVES video games, plays hockey in the local youth league, and is excellent at mathematics. My daughter Gracie is four years old. Gracie is persistent, vocal and organized in all of her undertakings. I can understand that it may be hard to imagine a four year old being all of these things, but I also understand that you have not likely had the opportunity to meet my daughter! One thing that my two children have in common, despite their differences, is they both have disabilities and require varying levels of care to help them achieve the same level of independence that other children their age have. Gracie has cerebral palsy and type 1 diabetes and Sandis has an autism spectrum disorder.
My daughter has been involved in physical therapy and occupational therapy. My daughter’s disability is primarily physical so she also has many medical specialist appointments. Gracie, through the help of many interventions, has increased her skills and independence by a huge degree. Because of this she now only requires weekly occupational therapy, orthopedic supports, and her diabetes therapy regimen which consists of testing her blood approximately ten times per day as well as one injection of insulin per day.
My daughter receives Medicaid which is based on my income. In January of 2008 Gracie will lose her secondary Medicaid coverage as our income will no longer qualify her for this coverage. Usually an increase in income is met with happiness in a family. In my family, I have considered asking my job to decrease my pay. My daughter does not qualify for TEFRA coverage as she is not “disabled enough“ as has been determined by the State Medical Review Team. When my daughter loses her Medicaid coverage next year, our family will be forced to make some very difficult decisions regarding Gracie’s care and what therapies and interventions I will be able to continue. I do not believe it is ethical for families of children with type 1 diabetes worrying about how often they can afford to check their child’s blood sugars. I believe that Minnesota needs to take into account the needs of high medical-needs children with pre-existing conditions that may not qualify for a disability determination. Gracie deserves the increased mobility she gains from her orthopedic supplies, the best care possible for her diabetes, and she has a right to the therapies she receives that help increase her fine motor development. Families, also, have a right to these services for their children even if their commercial insurance will not cover them or they can not afford the copays and percentages they are required to pay for them. My daughter should not be denied her maintenance therapy which allows her to NOT be considered disabled simply because I cannot afford them and we are not poor enough to qualify for typical Medicaid
Sandis has a federal determination of disability so he receives Medicaid that is not based on my income. Sandis currently has occupational therapy twice per week. Sandis’s occupational therapy focuses on life skills. Sandis learns how to tie his shoes, how to act in public places, how to maintain focus on an activity he may not like, as well as many self-regulatory techniques that help him deal with frustrations and sensory input. Sandis also receives PCA services daily during the week that further helps him to complete all those things that you or I take for granted. Sandis learns how to clean his room, how to brush his teeth and bathe, how to handle frustrating situations, and how to sit at the table for dinner. All of these things that my son works on both in formal occupational therapy and with his PCA are fundamental to his independence now and also as he grows older.
Sandis’s personal care attendant is a crucial piece of his functional education. Sandis has been receiving PCA services since April of 2007 and in the past 8 months Sandis has had four different personal care attendants. He also was “between” personal care attendants for approximately 6 weeks of the first six months he was eligible for services. This means a few things for Sandis. The first thing it means is that during the time periods that Sandis is without a PCA, Sandis is denied his independence in his home routines. The second thing it means is that through the course of eight months, a child that is very bound to routine, has had to accept a new person approximately every other month into his personal routines and learn to incorporate this person into his life. There is a certain level of privacy and humanity that is lost when a child is submitted to a revolving door of personnel to aid him in things like bathing, toileting, eating, and behavioral regulation. There is also a certain level of trust that each PCA must achieve in order for Sandis to relax enough to allow them to truly help him in his routines.
I believe that it is important to not only ensure that children who need home therapy assistance are assessed and qualified for these benefits, but we also need to focus on and resolve the reasons behind the high-turnover in the direct support workers field. This high turnover intimately affects families, children, and individuals. Minnesota needs to continue to work towards providing optimum reimbursements for direct support services, and we also need to ensure that any increases in reimbursements are being reflected in the wages of the actual direct support workers.
Good evening. My name is Sarah Rittmann and I live in Saint Cloud with my two young children, Sandis and Gracie. I first want to thank all of you for the opportunity you have given me to share with you the need for improvements in health coverage including home health and therapy options.
My son Sandis is seven years old. Sandis LOVES video games, plays hockey in the local youth league, and is excellent at mathematics. My daughter Gracie is four years old. Gracie is persistent, vocal and organized in all of her undertakings. I can understand that it may be hard to imagine a four year old being all of these things, but I also understand that you have not likely had the opportunity to meet my daughter! One thing that my two children have in common, despite their differences, is they both have disabilities and require varying levels of care to help them achieve the same level of independence that other children their age have. Gracie has cerebral palsy and type 1 diabetes and Sandis has an autism spectrum disorder.
My daughter has been involved in physical therapy and occupational therapy. My daughter’s disability is primarily physical so she also has many medical specialist appointments. Gracie, through the help of many interventions, has increased her skills and independence by a huge degree. Because of this she now only requires weekly occupational therapy, orthopedic supports, and her diabetes therapy regimen which consists of testing her blood approximately ten times per day as well as one injection of insulin per day.
My daughter receives Medicaid which is based on my income. In January of 2008 Gracie will lose her secondary Medicaid coverage as our income will no longer qualify her for this coverage. Usually an increase in income is met with happiness in a family. In my family, I have considered asking my job to decrease my pay. My daughter does not qualify for TEFRA coverage as she is not “disabled enough“ as has been determined by the State Medical Review Team. When my daughter loses her Medicaid coverage next year, our family will be forced to make some very difficult decisions regarding Gracie’s care and what therapies and interventions I will be able to continue. I do not believe it is ethical for families of children with type 1 diabetes worrying about how often they can afford to check their child’s blood sugars. I believe that Minnesota needs to take into account the needs of high medical-needs children with pre-existing conditions that may not qualify for a disability determination. Gracie deserves the increased mobility she gains from her orthopedic supplies, the best care possible for her diabetes, and she has a right to the therapies she receives that help increase her fine motor development. Families, also, have a right to these services for their children even if their commercial insurance will not cover them or they can not afford the copays and percentages they are required to pay for them. My daughter should not be denied her maintenance therapy which allows her to NOT be considered disabled simply because I cannot afford them and we are not poor enough to qualify for typical Medicaid
Sandis has a federal determination of disability so he receives Medicaid that is not based on my income. Sandis currently has occupational therapy twice per week. Sandis’s occupational therapy focuses on life skills. Sandis learns how to tie his shoes, how to act in public places, how to maintain focus on an activity he may not like, as well as many self-regulatory techniques that help him deal with frustrations and sensory input. Sandis also receives PCA services daily during the week that further helps him to complete all those things that you or I take for granted. Sandis learns how to clean his room, how to brush his teeth and bathe, how to handle frustrating situations, and how to sit at the table for dinner. All of these things that my son works on both in formal occupational therapy and with his PCA are fundamental to his independence now and also as he grows older.
Sandis’s personal care attendant is a crucial piece of his functional education. Sandis has been receiving PCA services since April of 2007 and in the past 8 months Sandis has had four different personal care attendants. He also was “between” personal care attendants for approximately 6 weeks of the first six months he was eligible for services. This means a few things for Sandis. The first thing it means is that during the time periods that Sandis is without a PCA, Sandis is denied his independence in his home routines. The second thing it means is that through the course of eight months, a child that is very bound to routine, has had to accept a new person approximately every other month into his personal routines and learn to incorporate this person into his life. There is a certain level of privacy and humanity that is lost when a child is submitted to a revolving door of personnel to aid him in things like bathing, toileting, eating, and behavioral regulation. There is also a certain level of trust that each PCA must achieve in order for Sandis to relax enough to allow them to truly help him in his routines.
I believe that it is important to not only ensure that children who need home therapy assistance are assessed and qualified for these benefits, but we also need to focus on and resolve the reasons behind the high-turnover in the direct support workers field. This high turnover intimately affects families, children, and individuals. Minnesota needs to continue to work towards providing optimum reimbursements for direct support services, and we also need to ensure that any increases in reimbursements are being reflected in the wages of the actual direct support workers.
Tuesday, November 20, 2007
Tagged!
I’ve been tagged! This doesn’t happen all that often in my parts, so thanks for the thought Vivian!
The rules:
1. Link to the person’s blog who tagged you.
2. Post these rules on your blog.
3. List seven random and/or weird facts about yourself.
4. Tag seven random people at the end of your post. (I’m probably not going to do this. I have trouble NOT following rules, but I’m not big on tagging folk.)
5. Let each person know they've been tagged by leaving a comment on their blog. (please see above)
7 Things About me
1. I am a drug addict. I went to treatment in 2004 for fentanyl & benzodiazepine drug addiction. The experience gave me the peace and strength that has helped me move mountains since then for my family. Sometimes it takes being at the bottom to realize what it takes to get to the top, or even if you still want to get to the top.
2. I am a perfectionist and have trouble breaking the rules. I seriously get a gut ache thinking about lying.
3. My SO is named Bob. Just so you know
4. I read. I read A.LOT. In October of 2006 we canned the cable, and I began a new reading career. We have no TV stations. We do have some DVDs though.
5. I am a firm believer that you are what you DO. Try tracking your time, all of your time, for a week. See if your values are reflected in what you are choosing to do each day. I learned that in treatment, and it changed my life and my perception of what I am capable of.
6. I can’t stand to have my feet touch eachother. Especially not at night. I need to wrap my feet up in blankets so they can’t physically touch, which in turn drives Bob right up the wall.
7. I am convinced that apathy is a contagious disease. I am also convinced that should you catch this contagion, you must work twice as hard as any other to rid yourself of its taint. But hey, that’s politics…..and seriously, politics doesn’t discriminate. Not if you have a good enough lawyer.
If you read this and you feel like sharing some seven things about you with your reader base, please do. Oh, and consider yourself tagged. But if you DO tag yourself from me, just send me a note, so I can read YOUR seven things.
The rules:
1. Link to the person’s blog who tagged you.
2. Post these rules on your blog.
3. List seven random and/or weird facts about yourself.
4. Tag seven random people at the end of your post. (I’m probably not going to do this. I have trouble NOT following rules, but I’m not big on tagging folk.)
5. Let each person know they've been tagged by leaving a comment on their blog. (please see above)
7 Things About me
1. I am a drug addict. I went to treatment in 2004 for fentanyl & benzodiazepine drug addiction. The experience gave me the peace and strength that has helped me move mountains since then for my family. Sometimes it takes being at the bottom to realize what it takes to get to the top, or even if you still want to get to the top.
2. I am a perfectionist and have trouble breaking the rules. I seriously get a gut ache thinking about lying.
3. My SO is named Bob. Just so you know
4. I read. I read A.LOT. In October of 2006 we canned the cable, and I began a new reading career. We have no TV stations. We do have some DVDs though.
5. I am a firm believer that you are what you DO. Try tracking your time, all of your time, for a week. See if your values are reflected in what you are choosing to do each day. I learned that in treatment, and it changed my life and my perception of what I am capable of.
6. I can’t stand to have my feet touch eachother. Especially not at night. I need to wrap my feet up in blankets so they can’t physically touch, which in turn drives Bob right up the wall.
7. I am convinced that apathy is a contagious disease. I am also convinced that should you catch this contagion, you must work twice as hard as any other to rid yourself of its taint. But hey, that’s politics…..and seriously, politics doesn’t discriminate. Not if you have a good enough lawyer.
If you read this and you feel like sharing some seven things about you with your reader base, please do. Oh, and consider yourself tagged. But if you DO tag yourself from me, just send me a note, so I can read YOUR seven things.
Monday, November 19, 2007
THRIVE
This evening I am attending a meeting for parents of young children for whom they have mental health and behavioral concerns. I have attached a flier that details what THRIVE is about and how it is intended to help families in my area.
My personal focus is not on early childhood, as my youngest is fast approaching no longer fitting in this category. But….You better believe that if I have an opportunity to effect the standards of care and assistance available to children and families I will be there….Raising my voice and my concerns.
My personal focus is not on early childhood, as my youngest is fast approaching no longer fitting in this category. But….You better believe that if I have an opportunity to effect the standards of care and assistance available to children and families I will be there….Raising my voice and my concerns.
Friday, November 16, 2007
My Diabetes in Review, and on My Front Page
So take a moment to take a look at the small text excerpt I have inserted below my TuDiabetes video.
This is my attempt to bring my diabetes care more to the forefront of my mind even while primarily addressing disability advocacy issues everywhere else. I scrupulously track my blood sugars and calories and carbohydrate intake. I intend to record my blood sugar averages for the week, my high, my low, and my exercise minutes throughout the week and enter the information into this small sidebar.
I hope to illuminate my very humanity by this (My numbers will always be far from perfect) but also to keep my numbers, and their meanings, closer to the front of my mind. Every. Single. Day.
Please feel free to comment anytime on what you see!
I’m thinking about adding these things:
Average daily carb intake
Average daily calorie intake
Weight
What do you think?
This is my attempt to bring my diabetes care more to the forefront of my mind even while primarily addressing disability advocacy issues everywhere else. I scrupulously track my blood sugars and calories and carbohydrate intake. I intend to record my blood sugar averages for the week, my high, my low, and my exercise minutes throughout the week and enter the information into this small sidebar.
I hope to illuminate my very humanity by this (My numbers will always be far from perfect) but also to keep my numbers, and their meanings, closer to the front of my mind. Every. Single. Day.
Please feel free to comment anytime on what you see!
I’m thinking about adding these things:
Average daily carb intake
Average daily calorie intake
Weight
What do you think?
Wednesday, November 14, 2007
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?
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?
Tuesday, November 13, 2007
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.
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.
Friday, November 09, 2007
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?
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?
Wednesday, November 07, 2007
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.
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.
Sunday, November 04, 2007
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!
And lastly, Sandis movin' the puck.
And yes, it really is that loud in the rink!
Saturday, November 03, 2007
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.
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.
Friday, November 02, 2007
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.
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.
Thursday, November 01, 2007
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)
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)
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